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Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16


Viesti Kirjoittaja soijuv » La Tammi 24, 2009 21:45

KIRJA: Milloin ALS on Borrelioosi? Mikä yhdistää ALS-taudin ja neuroborrelioosin?

Kirjan voi käydä lukemassa ilmaiseksi osoitteesta:

Sarah and John Vaughter - WHEN ALS IS LYME
Examining the link between ALS and Neuroborreliosis

Borrelioosi/ALS-potilaiden henkilökohtaisia kertomuksia sekä linkkejä lääketieteellisiin artikkeleihin asiasta: ... SLYME.html


Useita tutkimuksia borreliabakteerin ja ALS-oireiden yhteydestä. Useilla borrelioosia sairastavista on lisäksi mykoplasma elimistössään. Viimeisessä tutkimuksessa käsitellään mykoplasman yhteyttä ALS-oireisiin.

1. ?Borrelia burgdoferi antibodies and amyotrophic lateral sclerosis? The Lancet. August 8, 1987 Russel Johnson, MD et al. Case studies are discussed whereby persons who tested positive for Lyme on antibody tests ALSo showed classic ALS symptoms including denervation, atrophy, weakness, bulbar involvement, dysarthria, ataxia and so on. The end of the article states that any person with ALS should be given the opportunity for a Lyme diagnosis based on these compelling studies.

2. ?ALS-like sequelae in chronic neuroborreliosis? German newsletter entitled Wien Med Wochenschr, 1995;145(7-8 );186-8 Hansel Y, Ackerl M, Stanek G (very well known Lyme European researchers) [Lyme was very common neurologic disease in Europe in even 1800s but no one knew the organism causing it! This study suggests that all persons diagnosed with ALS be suspect for having Lyme disease as this particular case study individual had her diagnosis changed from ALS to Lyme. She had had Lyme for many years and the long-term sequelae of the infection caused an ALS misdiagnosis.

3. ?Neurologic Complications of Lyme Disease? Rheumatic Dis Clinincal North America, 1993 Nov;19(4):993-1009 begin_of_the_skype_highlighting              993-1009      end_of_the_skype_highlighting begin_of_the_skype_highlighting              993-1009      end_of_the_skype_highlighting Coyle, Patricia K. (Neurologist at Stony Brook University, New York) Quote from the article: ?Lyme disease should be included in the differential diagnosis [editors note: by physicians] of most major neurologic syndromes.?

4. ?Clinical and electrophyphsiologic findings in chronic neuropathy of Lyme Disease? Logigian El et al., Neurology 1992 Feb, 42(2):303-11. 48% had distal neuropathy involvement with multifocal losses. Weakness, hyporeflexia were present in some and motor or sensory nerve conduction showed slowing in 64%. 48% had radicular (nerve root pains). 75-80% of patients , with needle EMG studies showed DENERVATION IN PARASPINAL AND LIMB MUSCLES. 76% of patients showed improvement with intravenous rocephin therapy.

5. Immunologic Reactivity Against Borrelia burgdorferi in Patient with Motor Neuron Disease? Archives of Neurology-Vol 47, May 1990, p. 586-594. Author: John J. Halperin, MD et al.

6. ?Neuroborreliosis as a cause of respiratory failure?, Journal of Neurology, 242:9, 1995 Sep.604-7. Silva MT, et al. Lane Fox Respiratory Unit, St. Thomas? Hospital, London, UK. Three cases of Lyme causing acute respiratory impairment requiring ventilatory support. TWO OF THE THREE HAD BRAINSTEM INVOLVEMENT. All of these patients ALSo had central apnea requiring tracheostomy, etc.

7. ?Chronic Neurologic Manifestations of Lyme Disease? Logigian et al. New England Journal of Medicine, Nov. 1990. Neurologic studies and neuropsychiatric studies were performed on a group of Lyme patients. Findings showed that a group of Lyme patients had both proximal and distal paraspinal denervation on electromyographic testing (EMG) with clearly ALS signs. EMG studies revealed neuropathy both proximal and distal with noted denervation, atrophy and weakness.

8. ?Pathogenesis of immune-mediated neuropathies? [Immune-meidated is a = way of avoiding the use of ?autoimmune? meaning that something has ?triggered? the immunologic damage of the nervous system such as the spirochete infection.] Pediatr Res, 1993 Jan,33(1Suppl):S90-4 Dept. Neurology, University Pennsylvania School of Medicine In this abstract, Guillain-Barre disease is the topic with Lyme mentioned as well. NERVE CONDUCTION VELOCITY SLOWING AND SEGMENTAL DEMYELINATION IS MENTIONED. Many patients with Lyme disease have had a hard hit to their immune systems by this immune-suppressing infection and many of us have had to have gammaglobulin intravenously to help us fight the infection. This study mentioned the use of gammaglobulin therapy IV for GB patients as well.

9. ?Detection of Borrelia burgdorferi DNA and complement menbrane attack complex deposits in the sural nerve of a patient with chronic polyneuropathy and tertiary Lyme disease.? Institute of Neurological Sciences, University of Siena, Italy. Muscle Nerve, 1997 Aug;20(8 ):969-75. Maimone D, Villanova M, et al. This study delves into polyneuropathies, sural nerve biopsy showing spirochete infection, EMG findings etc.

10. Lyme Borreliosis neuropathy. A case report.? American Journal of Physican Medicine and Rehabilitation, 1996 Jul;75(4):314-316. This study is significant for ALS in that ?electrophysiologic studies demonstrate a PROXIMAL AND DISTAL AXONAL INVOLVEMENT.? It even suggests that EMGs may show improvement in clinical changes as therapy begins to improve neurologic involvement. This report suggests that some peripheral neuro involvements may resolve while other neuro symptoms may not. Responses vary.

11.?Myositis during Borrelia burgdorferi infectin (Lyme Disease) Schoenen J., et al, Journal Neurology and Neurosurgical Psychiatry 1989, Aug;52(8 ):1002-5. Patient developed myopathic syndrome with severe muscular pains, incapacitating weakness of the proximal limb and the neck, as well as the bulbar muscles. Steroids stopped symptoms for a while but only antibiotics improved the paresis.

12. ?Central nervous system manifestations of Lyme disease. Pachner AR, Duray P, et al. Achives of Neurology, 1989 July;46(7):790-5 Weeks to years after this infection, behavioral changes, ataxia, and/or WEAKNESS IN BULBAR OR PERIPHERAL MUSCLES DEVELOPED.? All 6 patients in this study were treated with IV penicillin high dose but the length was not mentioned. Four had response and 2 did not... again perhaps due to length of therapy not being long enough?

13. ?Multiple Neurologic manifestations of Borrelia burgdoferi infection? [article in French] Author-dupuis, MJ, Revue of Neurology (Paris) 1988;144(12):765-775. Clinique St.- Pierre, Ottignies, Belgique.
Harvey WT, Martz D. Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy.: Acta Neurol Scand. 2007 Feb;115(2):129-31.
Hemmer B, Glocker FX, Kaiser R, Lucking CH, Deuschl G. Generalised motor neuron disease as an unusual manifestation of Borrelia burgdorferi infection; J Neurol Neurosurg Psychiatry 1997;63:257-258 ( August )

Flores-Rio de la Loza LJ,Ordonez-Lozano G, Pineda-Olvera B, Determination of systemic infections due to Mycoplasma in patients with clinically defined amyotrophic lateral sclerosis, Rev Neurol. 2005 Sep 1-15;41(5):262-7.

Wien Med Wochenschr. 1995;145(7-8 ):186-8.Links
[ALS-like sequelae in chronic neuroborreliosis]
[Article in German]

Hänsel Y, Ackerl M , Stanek G .
Neurologischen Abteilung des Kaiser-Franz-Josef-Spitals, Wien.

CSF investigation in a 61-year old female patient with clinical picture of motoneuron disease gave evidence for chronic infection with Borrelia burgdorferi. Improvement of clinical and CSF findings could be observed after antibiotic therapy. The diagnosis of amyotrophic lateral sclerosis which was initially suspected had to be revised and the disorder was interpreted as chronic neuroborreliosis.

PMID: 7610670 [PubMed - indexed for MEDLINE]

Arch Neurol. 1990 May;47(5):586-94. Links
Immunologic reactivity against Borrelia burgdorferi in patients with motor neuron disease.
Halperin JJ, Kaplan GP, Brazinsky S , Tsai TF , Cheng T, Ironside A, Wu P , Delfiner J , Golightly M , Brown RH , et al.
Department of Neurology, State University of New York, Stony Brook 11794.

Of 19 unselected patients with the diagnosis of amyotrophic lateral sclerosis (ALS) living in Suffolk County, New York (an area of high Lyme disease prevalence), 9 had serologic evidence of exposure to Borrelia burgdorferi; 4 of 38 matched controls were seropositive. Eight of 9 seropositive patients were male (8 of 12 male patients vs 2 of 24 controls). Rates of seropositivity were lower among patients with ALS from nonendemic areas. All patients had typical ALS; none had typical Lyme disease. Cerebrospinal fluid was examined in 24 ALS patients--3 (all with severe bulbar involvement) appeared to have intrathecal synthesis of anti-B burgdorferi antibody. Following therapy with antibiotics, 3 patients with predominantly lower motor neuron abnormalities appeared to improve, 3 with severe bulbar dysfunction deteriorated rapidly, and all others appeared unaffected. There appears to be a statistically significant association between ALS and immunoreactivity to B burgdorferi, at least among men living in hyperendemic areas.

PMID: 2334308 [PubMed - indexed for MEDLINE]

Med Mal Infect. 2007 Jul-Aug;37(7-8 ):435-45. Epub 2007 Mar 9. Links
[Neurologic and psychiatric manifestations of Lyme disease]
[Article in French]

Blanc F; GEBLY.
Département de neurologie, hôpitaux universitaires de Strasbourg, 1, place de l'Hôpital, 67091 Strasbourg, France.

The neurological and psychiatric manifestations of Borrelia burgdorferi sensu lato are so numerous that Borrelia is also called the "new great imitator". Thus knowing about the multiple clinical aspects of neuroborreliosis is necessary for the clinician. We reviewed literature for "classical" neuroborreliosis such as acute meningoradiculitis or chronicle encephalomyelitis, but also for encephalitis, myelitis, polyneuritis, radiculitis and more controversial disorders such as chronic neurological disorders, ischemic and hemorrhagic stroke, and motor neuron disease. We specified every time on which basis each disorder was attributed to Lyme disease, particularly if European or American criteria were met. Every part of the nervous system can be involved: from central to peripheral nervous system, and even muscles. In endemic areas, Lyme serology must be assessed in case of unexplained neurological or psychiatric disorder. In case of positive serology, CSF assessment with intrathecal anti-Borrelia antibody index will be more efficient to prove the diagnosis.

PMID: 17350199 [PubMed - indexed for MEDLINE]

Rev Neurol (Paris). 2006 Jun;162 Spec No 2:4S50-4S56. Links
[What is the role of other complementary examination in amyotrophic lateral sclerosis?]
[Article in French]

Tranchant C.
Département de Neurologie, Hôpitaux Universitaires, Strasbourg.

Amotrophic lateral sclerosis diagnosis is based on clinical and electrophysiological findings. Transcranial magnetic stimulation and MRI can show abnormalities which are not specific, but which can confirm upper motor neuron involvement. The other tests are performed to exclude differential diagnosis. Tests which should be performed in every cases are: medullar MRI, blood counts, erythrocyte sedimentation, serum protein electrophoresis, calcium, phosphore, serological tests for HIV, siphylis, Lyme disease. Other tests are made in some clinical circumstances to exclude genetical disease or metabolic disorders (SMN gene, Kennedy gene, Hexosaminidase A, very long chaine fatty acids), haematological or paraneoplasic disorders (anti-neurons antibodies, PSA, CT of chest and abdomen, mammography, bone marrow biopsy) or inclusion myositis (muscle biopsy).

PMID: 17128090 [PubMed - indexed for MEDLINE]

J Neurol Neurosurg Psychiatry. 1997 Aug;63(2):257-8. Links
Generalised motor neuron disease as an unusual manifestation of Borrelia burgdorferi infection.
Hemmer B, Glocker FX, Kaiser R , Lücking CH , Deuschl G .
PMID: 9285472 [PubMed - indexed for MEDLINE]

Acta Neurol Scand. 2007 Feb;115(2):129-31. Links
Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy.
Harvey WT, Martz D .
Rocky Mountain Chronic Disease Specialists, L.L.C., North Circle Drive, Colorado Springs, CO 80909, USA.

This report summarizes what we believe to be the first verifiable case of a significant and progressive motor neuron disease (MND) consistent with amyotrophic lateral sclerosis that resolved during treatment with i.v. ceftriaxone plus oral atovaquone and mefloquine. The rationale for use of these antibiotics was (i) positive testing for Borrelia burgdorferi and (ii) red blood cell ring forms consistent with Babesia species infection. The patient has continued to be free of MND signs and symptoms for 15 months, although some symptoms consistent with disseminated Borreliosis remain.

PMID: 17212618 [PubMed - indexed for MEDLINE]

Tutkimuksia borreliabakteerin yhteydestä erilaisiin keskushermosto-oireisiin:

1: Acta Neurol Scand. 2007 Feb;115(2):129-31
Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy.
Harvey WT, Martz D.
Rocky Mountain Chronic Disease Specialists, L.L.C., North Circle Drive, Colorado Springs, CO, USA.

This report summarizes what we believe to be the first verifiable case of a significant and progressive motor neuron disease (MND) consistent with amyotrophic lateral sclerosis that resolved during treatment with i.v. ceftriaxone plus oral atovaquone and mefloquine. The rationale for use of these antibiotics was (i) positive testing for Borrelia burgdorferi and (ii) red blood cell ring forms consistent with Babesia species infection. The patient has continued to be free of MND signs and symptoms for 15 months, although some symptoms consistent with disseminated Borreliosis remain.

PMID: 17212618 [PubMed - in process]

The following is directly taken from Dr. Lida H. Mattman's Book -3rd Edition

With improved medium the MPM broth, we have cultured a spirochete from 38 of
41 spinal fluids. Some individuals whose diagnosis has been MS are actually Lyme Cases. Much research is needed to determine which serovars cause MS and which are associated with Lyme....

It was once published that amyotrophic lateral sclerosi (ALS) was probably a form of Lyme disease, but the possibility was discarded upon discovery that many cases lack circulating antibody to the spirochete. Now it is know that severe cases of spirochetal disease often DO NOT have antibody free in plasma; it is bound in the tissues in immune complexes.

The 18 cases of Lou Gehrig's disease which we have cultured, all have a spirochete in their blood, which reacts with Borrelia Burgdorferi antibody. Only a more complete biochemical analyses of major components will determine how closely the ALS spirochete may be related to the pathogens of Lyme disease and of MS. There are more than 100 known serovars of Leptospira inferogans; the taxonomy of Borrelia may be equally complex.

Genetic susceptibility to MS has been substantiated. This explains why many persons have antibody to the agent in their plasma, resulting from subacute ( between acute and chronic) infections.

A spiral-shaped organism has been noted in multiple sclerosis (MS) by so many investigators, over so many decades, in so many countries that it can hardly be ignored.

The search for the spirochete concerns three aspects: (1) visualization in brain at autopsy or in spinal fluid. (2) growth of the organism in laboratory animals, and (3) culture of the agents.

European pathologists led in finding spirochestes by silver staining of brain tissue or spinal fluid sediment. One patient's spinal fluid contained approximately 35 spirochetes/ml. G. Steiner, who named the organism Spirochaeta myelophora, was the most persistent in applying staining. He located the organisms even within the brain's glial (pertaining to the neuroglia) cells.

Regarding animal studies spirochestes were found when MS spinal fluid was inoculated into guinea pigs, monkeys, rabbits, and hamsters. When young rabbits were injected, the result was paralysis and death. We know of no reported injections into immunosuppressed animals.

Culture studies are given below:
Ichelson 59 of 75 patients- 28 controls Neg Newman 5 of 27 patients- 13 controls Neg Myerson 3 of 7 patients- 21 controls Neg The above investigations were followed by six negative attempts to culture spirochetes as reviewed by Kurtzke. Also damaging were later reports that Ichelson's spirochete was a vibrio, probably a contaminant from water not resembling the long spiraling organism of Ichelson's photographs. Ichelson's organism also has been labeled T. denticola, the term under which it has been stored with the American Type Culture Collection. A study found that morphologically is resembled a Treponeme (a genus-family of spirochetes) more than a vibrio (gram negative bacteria), but that the Ichelson's strain differed in biochemical reactions from a reference T. denticola strain. Also pertinenet is the identifying of T. denticola antigens associated with blood vessels of MS patients.

Gay and coworkers postulate that an oral spirochete is the agent of MS. They state that they have unpublished evidence by the western blot and immunofluorescence that a spirochete is in the central nervous tissue in active MS. They believe the disease is acquired at an age when the barrier between the sphenoidal sinus and subarachnoid space is relatively thin.

J Neurol Neurosurg Psychiatry 1997;63:257-258 ( August )

Letters to the editor

Generalised motor neuron disease as an unusual manifestation of Borrelia burgdorferi infection

Lyme borreliosis is a well known multisystem disease caused by the spirochete Borrelia burgdorferi and can produce a wide array of neurological abnormalities in humans. The most frequent are meningitis, cranial neuritis, and painful radiculoneuritis.1 Other clinical manifestations include chronic encephalomyelitis, spastic paraplegia, and axonal polyneuropathy. Our report concerns what we think to be the first case of a patient with upper and lower motor neuron disease and Borrelia burgdorferi infection of the CNS. A causal relation is strongly supported by an evaluation of the Borrelia burgdorferi specific antibody index and the patient's favourable response to medical treatment.

Oksi J; Kalimo H; Marttila RJ; Marjamaki M; et al. ,Inflammatory brain changes in Lyme borreliosis: A report on three patients and review of literature.

Brain, 119 ( Pt 6):2143-54. 1996.

?Chronic CNS involvement of LNB [Lyme neuroborreliosis] may mimic diseases such as neurosyphilis, meningoencephalitis of viral, fungal or ?The occurrence of severe encephalitis resulting in dementia in two of these patients... enlarges the known spectrum of neurologic abnormalities due to infection with B. burgdorferi.?

mycobacterial origin, multiple sclerosis, brain tumor, autoimmune disease, stroke or Alzheimer's disease.?

Reik L; Burgdorfer W; Donaldson JO, Neurologic abnormalities in Lyme disease without erythema chronicum migrans.: American Journal of Medicine, 81:73. 1986.

?The occurrence of severe encephalitis resulting in dementia in two of these patients... enlarges the known spectrum of neurologic abnormalities due to infection with B. burgdorferi.?

Pachner AR. Borrelia burgdorferi in the nervous system: the new "great imitator". Annals of the New York Academy of Sciences, 539:56-64. 1988

?Six patients had relapsing-remitting episodes of focal CNS disease, sometimes mimicking multiple sclerosis?

Trock DH; Craft JE; Rahn DW, Clinical manifestations of Lyme disease in the United States. Connecticut Medicine, 53(6). 1989.

?Later neurologic sequelae, such as demyelinating conditions... occur less commonly and may not become evident until several years after acute infection. ...MRI scanning of the brain may reveal demyelinating lesions...?

Hansel Y, Ackerl M, Stanek G., ALS-like sequelae in chronic neuroborreliosis

Wien Med Wochenschr. 1995;145(7-8 ):186-8. German.

?CSF investigation in a 61-year old female patient with clinical picture of motoneuron disease gave evidence for chronic infection with Borrelia burgdorferi. Improvement of clinical and CSF findings could be observed after antibiotic therapy. The diagnosis of amyotrophic lateral sclerosis which was initially suspected had to be revised and the disorder was interpreted as chronic neuroborreliosis.?

Hemmer B, Glocker FX, Kaiser R, Lucking CH, Deuschl G.

Generalised motor neuron disease as an unusual manifestation of Borrelia burgdorferi infection; J Neurol Neurosurg Psychiatry 1997;63:257-258

Fredrikson S, Link H. ,CNS-borreliosis selectively affecting central motor neurons. Acta Neurol Scand 1988;78:181-184

?A patient is described having Borrelia burgdorferi spirochetal infection clinically affecting central motor neurons selectively and without any sensory impairment.?

Halperin JJ, Kaplan GP, et al. Immunologic reactivity against Borrelia burgdorferi in patients with motor neuron disease. Arch. Neurol 1990; 47: 586-594

?Cerebrospinal fluid was examined in 24 ALS patients--3 (all with severe bulbar involvement) appeared to have intrathecal synthesis of anti- B burgdorferi antibody.?

Smith L. Improvement of patient with amyotrophic lateral sclerosis given ceftriaxone. Lancet 1992; 339:1417

Fredrikson S, Link H. ,CNS-borreliosis selectively affecting central motor neurons. Acta Neurol Scand 1988;78:181-184

Johnson R, et al., Borrelia burgdoferi antibodies and amyotrophic lateral sclerosis The Lancet. August 8, 1987.

Case studies are discussed whereby persons who tested positive for Lyme on antibody tests ALSo showed classic ALS symptoms including denervation, atrophy, weakness, bulbar involvement, dysarthria, ataxia and so on. The end of the article states that any person with ALS should be given the opportunity for a Lyme diagnosis based on these compelling studies.

Chmielewska-Badora J, Cisak E, Dutkiewicz J.Lyme borreliosis and multiple sclerosis: any connection? A seroepidemic study.

Department of Occupational Biohazards, Institute of Agricultural Medicine, Jaczewskiego 2, 20-090 Lublin, Poland.

A total of 769 adult neurological patients hospitalised in clinics and hospitals situated in the Lublin region (eastern Poland) were examined during the years 1997-2000 with ELISA test for the presence of anti-Borrelia burgdorferi sensu lato antibodies. A statististically significant (p=0.0422) relationship was found between the clinically confirmed diagnosis of multiple sclerosis and the positive serologic reaction with Borrelia antigen. Ten out 26 patients with multiple sclerosis (38.5%) showed positive serologic reaction to Borrelia, whereas among the total number of examined neurological patients the frequency of positive findings was twice as low (19.4%). The result suggests that multiple sclerosis may be often associated with Borrelia infection

David S. Cassarino, MD, PhD,a Martha M. Quezado, MD,a Nitya R. Ghatak, MD,a and Paul H. Duray, MDa

Lyme-Associated Parkinsonism: A Neuropathologic Case Study and Review of the Literature, Archives of Pathology and Laboratory Medicine: Vol. 127, No. 9, pp. 1204-1206.

From the Laboratory of Pathology, National Cancer Institute, National Institutes of Health, Bethesda, Md (Drs Cassarino, Quezado, and Duray); and the Departments of Pathology and Neuropathology, Virginia Commonwealth University, Richmond (Dr Ghatak)

Accepted April 11, 2003

Neurological complications of Lyme disease include meningitis, encephalitis, dementia, and, rarely, parkinsonism. We present a case of striatonigral degeneration, a form of multiple system atrophy, in Lyme- associated parkinsonism. A 63-year-old man presented with erythema migrans rash, joint pains, and tremors. Serum and cerebrospinal fluid antibodies and polymerase chain reaction for Borrelia burgdorferi were positive. Clinical parkinsonism was diagnosed by several neurologists. Despite treatment, the patient continued to decline, with progressive disability, cognitive dysfunction, rigidity, and pulmonary failure. At autopsy, the brain showed mild basal ganglia atrophy and substantia nigra depigmentation, with extensive striatal and substantia nigral neuronal loss and astrogliosis. No Lewy bodies were identified; however, ubiquitin-positive glial cytoplasmic inclusions were identified in striatal and nigral oligodendroglia. There were no perivascular or meningeal infiltrates, the classic findings of neuroborreliosis. To our knowledge, this is the first report of striatonigral degeneration in a patient with B burgdorferi infection of the central nervous system and clinical Lyme-associated parkinsonism.
Viimeksi muokannut soijuv, Ma Huhti 02, 2012 17:06. Yhteensä muokattu 3 kertaa.

Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16

Viesti Kirjoittaja soijuv » To Loka 08, 2009 09:51

414:lle ALS-potilaalle tehtiin borrelioositesti. 24:llä testit olivat positiiviset. Kahdelle annettiin kuukauden antibioottihoito (keftriaksoni). Hoidolla ei ollut vaikutusta. Borreliabakteeri ei todennäköisesti aiheuta ALS-oireistoa. (USA 2009).

Suom.huom. Testien epäluotettavuus on todettu lukuisissa tutkimuksissa. Lisäksi Bb:n on useissa tutkimuksissa todettu kykenevän väistämään sekä antibiootteja että immuunipuolustusta usein eri tavoin. Hoidon pituudella ja annetulla antibiootilla on myös vaikutusta lopputulokseen kuten esim. lääkäri Martzin kokemus on osoittanut. Hän käytti esim. aluksi puoli vuotta suonensisäistä antibioottihoitoa. Hän on palannut työelämään ja avannut vastaanottonsa uudelleen.

Muscle Nerve. 2009 Aug 20; [Epub ahead of print]

Lyme disease serology in amyotrophic lateral sclerosis. Qureshi M, Bedlack RS, Cudkowicz ME. Neurology Clinical Trials Unit, Massachusetts General Hospital, Harvard MedicalSchool, 13th Street, Building 149, Room 2274, Charlestown, Massachusetts 02129,USA.

Lyme disease is sometimes part of the differential diagnosis for amyotrophiclateral sclerosis (ALS). Herein we report on 414 individuals with ALS at theMassachusetts General Hospital who underwent laboratory testing for Lymedisease. Twenty-four (5.8%) were seropositive, but only 4 (0.97%) had confirmed past immunoreactive infection. Two of these patients received ceftriaxone for 1month without clinical improvement. Lyme disease was rare in 414 patients withALS and is not likely to be causative.

Muscle Nerve, 2009. ... rlinksPMID: 19697382 [PubMed - as supplied by publisher]
Viimeksi muokannut soijuv, Pe Huhti 29, 2011 08:07. Yhteensä muokattu 1 kertaa.

Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16

Viesti Kirjoittaja soijuv » To Maalis 10, 2011 10:25


(2007) Norjalainen Eivind Markhus sairastui neurologisiin oireisiin. Hänellä oli ollut aiemmin ihossaan puolen vuoden ajan borrelioosille tyypillinen ihomuutos. Hänella ilmeni lihasten jäykkyyttä ja kramppeja. Lopulta hän päätyi pyörätuoliin. Borrelioositestit olivat negatiiviset. Niinpä hänen kerrottiin sairastavan ALS-tautia. Videolla eri asiantuntijat kertovat borrelioositestien epäluotettavuudesta ja siitä miten bakteeri eri menetelmin piiloutuu immuunipuolustukselta joten elimistö ei kykene muodostamaan vasta-aineita.

Videolla esim. tri Horowitz kertoo, että hänen vastaanotolleen saapuu potilaita eri puolilta maailmaa koska he eivät saa diagnoosia eivätkä riittävää hoitoa omilta lääkäreiltään. Hän kertoo hoitojen todella auttaneen potilaita.

Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16

Viesti Kirjoittaja soijuv » To Maalis 10, 2011 10:30

Mercury News 2010:

Kuukausi sitten Bart Fenoliolle kerrottiin hänen sairastavan ALS-tautia ja että hänellä oli n. kaksi kuukautta elinaikaa. Vaimoa kehotettiin viemään puoliso kotiin ja aloittamaan saattohoidot. Fenolio osoitti kuitenkin lääkäreiden olleen väärässä. Hän aloitti antibioottihoidot borrelioosiin ja voi nyt päivä päivältä paremmin.

Tri Stricker kertoo tapaavansa jatkuvasti borrelioosia sairastavia jotka ovat saaneet vääriä Parkinson-, krooninen väsymysoireyhtymä- jne. diagnooseja.Yhtenä päivänä vastaanotolleni tuli nainen jolla oli outoja oireita. Hän oli käynyt Mayo-klinikalla jossa hänelle oli tehty useita testejä. Lääkärit eivät osanneet sanoa muuta kuin että naisella on fibromyalgia. Tri Stricker ihmettelee että lääkärit eivät olleet lainkaan huomioineet sitä tosiasiaa että nainen oli elänyt elämänsä Cape Codissa jossa borreliabakteereja kantavia punkkeja esiintyy paljon. "Miten ihmeessä lääkärit jättivät huomioimatta niin tärkeän yksityiskohdan", Stricker ihmettelee.

Fenolio, 69, tietää tarkkaan miten hän sai borrelioosin. Kuusi vuotta sitten hän oli täysin terve. Hän sai punkinpureman ollessaan koiransa kanssa lammen rannalla. Pureman ympärille tuli ihomuutos. Hän näytti sitä lääkärille mutta koska borrelioositesti oli negatiivinen, asia unohdettiin.

Kolme vuotta myöhemmin hän alkoi oireilla ja neurologi kertoi syynä olevan ALS-taudin.

Fenolion poika kuitenkin muisti isällä olleen aikoinaan punkinpureman. He lähettivät borrelianäytteen laboratorioon. Se oli positiivinen. Borrelioosiin erikoistunut lääkäri kirjoitti Fenoliolle pitkän antibioottilääkityksen.

Taistelu ei kuitenkaan ollut ohi. Vaikka Fenolio alkoi tulla antibioottihoidolla parempaan kuntoon kotikunnan lääkärit halusivat lopettaa hoidon Tähän oli syynä se, että IDSA eli Amerikkalaisten infektiolääkärien yhdistys on sitä mieltä että kroonista borrelioosia ei ole eikä pitkistä antibioottihoidoista ole hyötyä.

Tri Jonathan Blum on Kaiseri alueen infektiolääkäri. Hän vahvistaa alueella noudatettavan IDSA:n näkemyksiä. Hänen mielestään pitkillä antibiooottihoidoilla on vakavia sivuvaikutuksia eikä niitä tule käyttää ellei niistä ole osoitettavissa selkeää hyötyä.

Fenolioiden mukaan antibiooteista on ollut selkeä apu. Bart Fenolio on tullut päivä päivältä parempaan kuntoon. Hän on tällä hetkellä vielä hoitolaitoksessa mutta vaimo on toiveikas että hän on parissa kuukaudessa tarpeeksi hyvässä kunnossa tullakseen kotiin.

Vaimo toivoo ettei kukaan muu joutuisi käymään läpi samaa painajaista kuin he ovat joutuneet. "Mikäli minun kerrottaisiin sairastavan ALS-tautia haluaisin totisesti että minulle tehtäisiin ensin borrelioositesti."

Fenolio pääsi kotiin: Tarinan jatko-osa + muita ALS kertomuksia ... /lyme-als/ ... ck_check=1
Fisher: Learning about Lyme disease the hard way

By Patty Fisher
Posted: 01/21/2010 05:41:13 PM PST
Updated: 01/22/2010 11:34:54 AM PST

Click photo to enlarge
Bart Fenolio with his wife, Heidi, at A Grace Sub-Acute Care... (Nhat V. Meyer, Mercury News)

A month ago, Bart Fenolio was told he had Lou Gehrig's disease and had two months to live. Doctors advised his wife, Heidi, to take him home and call a hospice.

But Fenolio is proving the doctors wrong. Instead of getting worse, he's growing stronger each day, thanks to antibiotics. That's because he doesn't have Lou Gehrig's disease, which isn't curable. He has Lyme disease, which is.

Lyme disease, a bacterial illness spread by ticks, is a poorly understood and strangely controversial illness that has been sweeping the country since it was discovered in Connecticut in the 1970s. While still rare in California, there were 28,921 confirmed cases and 6,277 probable cases in the United States in 2008, nearly twice as many as in 1994.

But Lyme experts suspect there could be 10 times that many. That's because when not treated immediately, Lyme can hide in the body for years and then attack, masquerading as anything from heart disease to arthritis to lupus. Folks might not even know they'd been bitten. And the tests for Lyme disease are notoriously unreliable.

Dr. Raphael Stricker, a Lyme disease expert in San Francisco, regularly sees patients who have been misdiagnosed with chronic fatigue syndrome or Parkinson's disease.

"I saw a new patient the other day who had weird symptoms and had gone to the Mayo Clinic for a complete work-up," Stricker told me. "All they could come up with was fibromyalgia," a syndrome characterized
by chronic pain, fatigue and depression. Stricker learned that the woman had grown up on Cape Cod, where Lyme-carrying ticks are common.

"How could you miss that little tidbit of her history?" he wondered.

Bitten in Morgan Hill

Fenolio, 69, knows just how he contracted the disease. Six years ago a healthy and hearty Fenolio was playing with his dog Cody near a percolation pond in Morgan Hill and was bitten by a tick. When a circular rash appeared around the bite, he went to the doctor. A Lyme test came back negative, and he forgot all about it.

Three years later he retired from the tropical fish store ?Dolphin Pet Village ? he and his sister owned in Campbell. He and his wife moved to San Diego to be near their grandchildren and to enjoy playing lots of golf.

But his golf game slowly deteriorated. He couldn't seem to grip the club. Then, during a vacation in Hawaii, he was too weak to climb out of the pool. His doctor told him he was just getting old. His wife wasn't buying it.

"I said, 'This is not old age. My husband is disintegrating before my eyes, and something's going on.' "

Their Kaiser Permanente internist referred them to a neurologist, who diagnosed Lou Gehrig's disease. Then Fenolio's son remembered the tick bite.

Fighting for treatment

A laboratory that specializes in Lyme tests confirmed his suspicion, and a Lyme specialist in Redwood City prescribed a long-term course of antibiotics. But the ordeal wasn't over. Although Fenolio began to improve on antibiotics, his wife told me, Kaiser doctors wanted to discontinue them.

That's because the Infectious Disease Society of America still recommends against extended treatment using antibiotics, and it casts doubt on whether chronic Lyme disease exists at all, despite thousands of documented cases. Because of the IDSA's position, health insurers generally refuse to cover long-term antibiotics. In most states, though not in California, doctors can lose their licenses just for treating chronic Lyme.

Dr. Sara Cody of the Santa Clara County Health Department cautioned that Lyme disease is rare here, and Fenolio's case doesn't prove that there's rampant misdiagnosis going on.

"What he is experiencing is tragic but not common," she said.

Dr. Jonathan Blum, an infectious disease specialist at Kaiser Permanente Santa Clara, wouldn't discuss Fenolio's case. He confirmed that Kaiser follows the IDSA protocols.

"Long-term antibiotics can cause significant side effects," he said, "and should be used only if they are going to help the patient."

Fenolio's family is convinced that the antibiotics are helping. Today he is in a San Jose nursing home, improving each day. He knows there will be setbacks, but his wife hopes he'll be strong enough to go home in a couple of months.

"I just wouldn't want anyone else to go through this nightmare," she said. "If I had one of those diseases and was told there was no cure, I would definitely want to be tested for Lyme."

Contact Patty Fisher at or 408-920-5852.

# Named for the Connecticut town where it was identified in the 1970s, Lyme disease is carried by ticks, specifically deer ticks and Western black legged ticks.
# To prevent infection, wear long sleeves and trousers when hiking and do frequent tick checks.
# If you are bitten, remove the tick and see a doctor.

# For more about Lyme disease or to find a Lyme disease specialist, go to the International Lyme And Associated Diseases Society at, or the California Lyme Disease Association at

Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16

Viesti Kirjoittaja soijuv » To Maalis 10, 2011 10:34

"Asiantuntijoiden mukaan Borrelioosi leviää vauhdilla - normaali hoito ei välttämättä auta.

Kuukausiin kukaan ei tiennyt mikä Tom Coffeya vaivasi. Keväällä 2001, ollessaan 34-vuotias hänen verenpaineensa kohosi ja hänelle ilmeni kaksoiskuvia. Kesän lopulla hän sai kasvohermohalvauksen, fatiikkia, voimakkaita nivelkipuja. Useat lääkärikäynnit eivät tuoneet apua. Lokakuuhun mennessä Tomin paino oli kaksinkertaistunut.

Lääkärini ei enää tiennyt mitä tehdä ja lähetti minut eri asiantuntijoille. Yhtenä aamuna hän ei kyennyt nielemään suuhunsa tullutta limaa. Coffey meni nopeasti sairaalaan. Lukuisien testien jälkeen lääkärit päättelivät että Coffey sairasti ALS-tautia. Tauti tappaisi hänet todennäköisesti puolessa vuodessa.Tomille laitettiin nenä-mahaletku ja hän odotti kuolemaa. Eräs sukulainen kuitenkin epäili oireiden johtuvan borrelia-bakteerista. Tom meni Borrelioosiiin erikoistuneen lääkärin, Greg Bachin, vastaanotolle. Tämä huomasi päänahassa ihomuutoksen joka oli tullut punkinpuremasta. Luulin aina että Borrelioosi ei ole mikään iso juttu, mutta bakteeri oli vähällä tappaa minut, Tom kertoo.

Tom Coffey jatkoi antibioottihoitoa 14 kk. Hän ei halunnut ottaa riskiä vaan varmistaa että bakteeri todella häviää. Tri Fallonin mukaan vähintään puolet sairastuneista saa aivan liian lyhyen hoidon. Joidenkin potilaiden kohdalla pitkä suonensisäinen antibioottihoito saattaa olla välttämätöntä."

The Lyme Disease Association has "Reprinted from PEOPLE Weekly's June 16,
2003 issue by special permission; © 2003 Time Inc. All rights reserved"

People; 16 2003 J.D. Heyman Joanne Fowler in Frederick

Hidden Plague. Forget about SARS. Lyme disease is spreading steadily,
and some experts say it can elude the standard cure

For months no one knew what was happening to Tom Coffey. In the
spring of 2001 the then 34-year-old radio dispatcher was struck by
high blood pressure and double vision. By summer's end he was
suffering from facial palsy, crushing fatigue and joint pain so
intense he walked with an old man's shuffle. Medical visits turned up
nothing. By October his weight had plummeted 105 lbs., to 202. "My
doctor was at the end of his rope," says Coffey. "He kept referring
me to different people."

When he awoke unable to swallow his saliva, Coffey rushed to a
hospital near his Frederick, Md., home and was given blood tests and
brain scans. Doctors returned with a terrifying diagnosis: ALS, or
Lou Gehrig's disease, a degenerative illness likely to kill him
within six months. "Tom's dad said, 'I always thought he'd be burying
me. Now I'll be burying him,'" says Coffey's wife, Tricia, 35.

Hooked to a feeding tube, Coffey waited to die. But a relative who
thought his symptoms might have another cause suggested a trip to Dr.
Greg Bach, a suburban Philadelphia Lyme disease specialist. The
doctor found something everyone else had missed--a "bulls-eye" rash
beneath his patient's hair. Coffey was suffering not from ALS but
from a severe case of Lyme, which is spread to humans by tick bites.
For most people, Lyme manifests in a rash and flulike symptoms easily
treated with antibiotics. Left undiagnosed, however, it can invade
the nervous system. "I always thought Lyme was no big deal," says
Coffey, who rebounded after taking medication. "But it damn near
killed me."

In fact Lyme is rarely fatal, but as Americans head outdoors during
the peak infection months of May to July, experts warn that it can be
devastating--and that the threat is growing. In the past decade the
disease has spread from the Northeast to every state except Montana.
Last year the Centers for Disease Control reported 17,000 cases--more
than double the number in 1990--but researchers like Joseph Piesman
of the CDC say the actual incidence may be about 10 times higher.

The illness is also the subject of a growing debate. While most
doctors believe that Borrelia burgdorferi, the tick-borne spirochete
that causes Lyme, is quickly killed by medication, many patients
complain of arthritis, irregular heartbeat, memory loss and motor-
skill problems long after they have undergone the standard two-to-
four-week treatment regimen. That has led some researchers to
conclude that Lyme can return as a chronic illness in perhaps 10
percent of those thought to be cured. "Lyme is much more serious than
the public recognizes," says Dr. Brian Fallon, director of Columbia
University's Lyme Disease Research Center. "People can have severe
cognitive problems for the rest of their lives." The medical
establishment, however, remains unconvinced, and a few doctors have
been penalized for their treatment of recurrent Lyme. Pat Smith, head
of the Lyme Disease Association, a nonprofit group calling for
greater research on the disease, thinks pressure not to recognize the
chronic form comes from insurance companies: "They don't want to

No one disputes that late-stage Lyme is little understood. Tests are
often effective only in early-stage infection, and while sufferers
usually get a rash, they don't always notice it. Worse, many Lyme
symptoms mimic other diseases: fibromyalgia, multiple sclerosis, even
mental illness. That means other diseases may be mistakenly treated
as Lyme--the crux of mainstream objections to the chronic-disease
theory. "People who test negatively for Lyme are still being given
antibiotics to see what happens," says Dr. Gary Wormser, head of
infectious diseases at New York Medical College.

But Fallon argues that a longer course of medication, given
intravenously, may be needed for some patients. Coffey's doctor
agrees. "Half the patients I see have been inadequately treated,"
says Bach. "These people thought they were cured by being treated
only a little."

Coffey, now 37, is taking no chances: He has remained on antibiotics
for 14 months to be sure that his Lyme is really gone. Still, he's
grateful to have escaped his death sentence. "I'm starting over
again," he says. "From here on out, the rest is gravy."

--J.D. Heyman --Joanne Fowler in Frederick


--How it works: Recurrent symptoms--from fatigue to joint pain--could
be caused by Lyme itself or by some other factor, perhaps an
autoimmune response that lingers after the spirochete is gone.

--How it eludes detection: The Lyme spirochete may be able to hide
deep in tissue, where it can elude blood tests and antibiotics.

Experts do agree on preventive measures: Use bug repellent; wear long
pants (ideally tucked into socks) and sleeves in brushy areas. And do
a tick-check daily.

Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16

Viesti Kirjoittaja soijuv » To Maalis 10, 2011 10:58

Tri Martzin borrelioositarina (2006): ALS-oireet ja pitkä suonensisäinen antibioottihoito.

Tri Strickerin mukaan "useat infektiotautilääkärit ovat sitä mieltä että borrelioosi on helposti hoidettavissa ja että krooninen borrelioosi on erittäin harvinainen. Heillä näyttää olevan suuria vaikeuksia myöntää, että he ovat väärässä."

Tri Martz sairastui yllättäen voimakkaisiin oireisiin v. 2003. Oireet: Kipuja koko kehossa ja kävelyvaikeuksia. "Tiesin että jotakin oli pahasti vialla." Sairaalassa tehtiin kaikki mahdolliset testit ja diagnoosiksi annettiin ALS-tauti. Hänelle kerrottiin että tauti johtaa pyörätuoliin puolessa vuodessa ja kuolemaan noin kahdessa vuodessa.

Eräs ystävä lähetti hänelle lehtileikkeen jossa kerrottiin myöhäisvaiheen borrelioosista ja oireiden samankaltaisuudesta mm. ALS-oireiden kanssa. Tämän seurauksena tri Martz joutui keskelle "borrelioosisotaa" - eli onko borrelioosi vakava terveysuhka vai ei ja pitääkö sen hoitoon suhtautua entistä paljon vakavammin.

Martzin borrelioositestit tehtiin ensin Mayo-klinikalla. Ne tulivat takaisin negatiivisina. Varmuuden vuoksi hänelle annettiin kuukauden antibioottihotio, mutta se ei auttanut. Martzin jalat ja kädet heikkenivät entisestään niin ettei hän kyennyt nousemaan enää tuolista. Martzin kaikki oireet sopivat täydellisesti ALS-tautiin (oireistoon).

Vasta-ainetesti tehtiin sen jälkeen IGENEXillä. Testitulos oli jälleen negatiivinen. IGENEX teki sen lisäksi myös kehittämänsä virtsatestin ja sen tulos oli positiivinen. Tämän jälkeen Martz hakeutui borrelioosin hoitoon erikoistuneen W. Harveyn vastaanotolle ja hänelle aloitettiin tammikuussa 2004 suonensisäiset antibioottihoidot.

Kolmen kuukauden kuluttua hoitojen aloittamisesta hän kykeni seisomaan ilman apua pitkiä aikoja ja taivuttamaan polvensa. Puolen vuoden hoitojen jälkeen hänen tilansa oli parantunut lähes samaksi kuin se oli ennen sairastumista.

Martzilla on nyt voimakas tarve auttaa muita sairastuneita. Hän on vuoden aikana hoitanut 350 potilasta joilla on ollut mm. ALS-, fibromyalgia-, krooninen fatiikki- jne. oireita. Potilaat ovat tavanneet keskimäärin 24 lääkäriä aikaisemmin ja heille on kerrottu että oireet sopivat MS-, lupus-, psyykkisiin sairauksiin jne.

Noin 80 % IGENEXin borreliatesteistä näiden potilaiden kohdalla ovat olleet positiivisia. Heille on aloitettu pitkät suonensisäiset antibioottihoidot. Myös ne, joiden borreliatestit ovat negatiiviset, mutta joiden kliiniset oireet sopivat borrelioosiin, saavat antibiootteja ja useat ovat alkaneet voida paremmin.

Martzin mukaan antibiootit eivät kuitenkaan välttämättä auta kaikkia. Hän on kuitenkin valmis auttamaan kaikkia, jotka ovat halukkaita kokeilemaan, onko hoidosta hyötyä heidän kohdallaan. Vakuutusyhtiöt eivät kuitenkaan ole valmiita korvaamaan kalliita hoitoja.

Ennen sairastumistaan Martz oli Coloradon lääketieteellisen yhdistyksen puheenjohtaja. Nyt hän huomasi kuuluvansa lääketieteen "toisinajattelijoihin, sillä perinteisestä hoitomallista poiketen hän käytti itsensä hoitoon pitkiä antibioottihoitoja ja on nyt kyennyt avaamaan lääkärivastaanottonsa uudelleen.

Martzin mielestä lääkäreiden on alettava ajattelemaan borrelioosia laajemmin, "laatikosta ulospäin" - heidän tulee olla avoimia ja tunnustettava, että asia on monimutkaisempi kuin mitä on tähän saakka ajateltu.

February 19, 2006

Chronic Lyme disease debate: Common ailment or false hope?


Like the flu, it hit hard and fast.

But Dr. David Martz knew whatever he had was worse than the flu.

"My whole body hurt, and I could hardly get out of bed and I could hardly walk," he said. "I knew something real serious was wrong."

He fell ill in April 2003. He was hospitalized for two weeks and underwent, he said, "every test known to man." Weeks and months went by as his condition deteriorated, and the search for answers continued.

The answer, when it came, was frightening: ALS, also known as Lou Gehrig's disease, a progressive neurological disease that attacks nerve cells responsible for controlling voluntary muscles. You'll probably be in a wheelchair in six months, Martz was told, and dead in two years.

A newspaper clipping sent to him by a family friend gave him a possible alternative diagnosis: chronic Lyme disease. And it put him in the middle of what is being called the Lyme Wars, a debate over the true threat posed by Lyme disease.

Lyme disease is a tick-borne infection most prevalent in the Northeastern United States. Mainstream medicine regards it as generally simple to recognize and easy to treat with a few weeks of antibiotics. But some doctors view Lyme disease as something more common and more insidious, often hiding in the body and manifesting as a chronic infection requiring months or years of intensive antibiotic treatment.

They regard Lyme disease as a "great impostor," accounting for some cases of chronic fatigue syndrome, fibromyalgia, Gulf War syndrome and other illnesses with often vague and confusing symptoms.

Martz, who has largely recovered after long-term antibiotic therapy, is a believer - so much so that the Colorado Springs doctor started a practice focused on chronic Lyme disease. A past president of the Colorado Medical Society and the El Paso County Medical Society, the 65-year-old Martz now finds himself on medicine's fringes.

The debate boils down to hope. Are patients diagnosed with chronic Lyme disease being given false hope and wasting money on years of treatment? Or are doctors who don't believe in the condition denying ill and often desperate patients hope when there could be some?

"Rather than close the mind, where's the harm in saying maybe there's another dimension to it?" Martz said. "Let's think out of the box, as the saying goes, and stay open to the possibility that maybe this is more complicated than we realized."


Martz grew up in smalltown Illinois and moved with his family to Las Animas, in the Arkansas Valley, in 1956. His father, a Baptist minister, wanted him to follow in his footsteps. But Martz, seeking to combine his scientific interests with a humanitarian bent, chose medicine as a career.

A 1965 graduate of the University of Colorado Medical School in Denver, he moved to Colorado Springs in 1970 and over the decades practiced internal medicine, oncology and hematology. He was a hospice medical director and part-time hospitalist when he fell ill.

The initial diagnosis was a motor-neuron disease of unknown cause, possibly ALS. Lyme disease was considered, but blood samples sent to the Mayo Clinic were negative for Borrelia burgdorferi, the corkscrew-shaped bacterium that causes Lyme. One doctor put him on a month of antibiotics as a treatment for Lyme anyway, but it didn't help.

His legs became weaker, and symptoms spread to his hands and shoulders.

"He fairly quickly was unable to rise from a chair by himself or fully dress himself," said Martz's wife, Dee.

He met all the clinical criteria for amyotrophic lateral sclerosis, or ALS. It's a disease that's difficult to diagnose in the early stages. There is no one test or procedure to establish the diagnosis. And there is no cure.

Dee Martz, a licensed professional counselor, had lost her previous husband to a fast-moving cancer. This would be slower. David Martz's muscles would waste away, but his mind would stay clear, trapped in an increasingly paralyzed body.

"The reality of what life would look like with ALS was very stark," Dee Martz said.

The newspaper article David Martz received offered a sliver of hope. It quoted a Lyme specialist saying the usual tests are inaccurate; more sensitive testing is required.

So Martz turned to a laboratory known for that specialized testing, IGeneX Inc., in Palo Alto, Calif. A conventional antibody test came back negative. But IGeneX also did a urine test, using a method questioned by federal health agencies in a warning last year against testing that hasn't been validated. It was positive.

Martz became a patient of Dr. William Harvey, a Lyme specialist in Texas. He began intravenous antibiotic therapy in January 2004.

By then, Martz said, he was "basically homebound."

"I could walk maybe a hundred yards. I could stand only five minutes, at which point I would begin to shake and had to sit down."

His stamina improved within a month of beginning treatment. In three months, he could stand unassisted for longer periods, and do deep knee bends. In six months, he was much as he is now, his strength and energy about 75 percent of what it was before he fell ill.

With his rapid progress, he became Harvey's star patient.

"Nobody I know of has gotten that much better that fast," Martz said.


Martz retired when he became ill. In January 2005, feel-ing better and wanting to help others, Martz opened a new practice, Rocky Mountain Chronic Disease Specialists.

His stamina still isn't what it was, Dee Martz said, and she worries he could be endangering his health by continuing to push himself.

"But he feels so strongly that his gift of life is something he wants to pass on to others," she said.

Martz has seen about 350 patients in the first year: roughly 70 with neurological, ALSlike illnesses, the rest with problems such as fibromyalgia or chronic fatigue syndrome. And all are seeking answers.

"The average person has seen 24 previous doctors, and they've been told that they have maybe lupus, but it doesn't fit, maybe MS, but it doesn't fit, maybe psychiatric problems," he said.

About 80 percent test positive for the Lyme bacterium using IGeneX testing and are given the option of long-term antibiotic therapy, Martz said. Those who test negative but still fit "the classical clinical picture" also are offered the therapy, and many improve, Martz said.

"That just shows that the testing is not adequate yet."

The therapy is not a cureall, Martz stressed. And, at $2,000 to $3,000 a month, it isn't likely to be covered by insurance, because insurance companies don't commonly recognize chronic Lyme disease.

"You need to go into it understanding that it may not have any benefit at all," Martz said. "But if you wish to try it, we're willing to help you."

Don and Peggy Brown of Yuma, in northeastern Colorado, regard Martz as their daughter's saviour.

Sabrina Brown, 18, began having problems four years ago. It began with upper-back pain, but other symptoms began to pile on: acid reflux, blinding headaches, fatigue and cognitive problems, such as confusing colors.

Don Brown said they went to about 80 health care practitioners - doctors, chiropractors, acupuncturists, "you name it."

Ultimately, the answer they got was, "She's female, she's a teenager, her hormones were raging and she was crazy."

Peggy Brown, through Internet research, zeroed in on chronic Lyme disease as a possible explanation. Initial testing was negative. But it all fit, the Browns thought.

Then they found Martz.

"That's when the ball started rolling," Don Brown said. Blood samples sent to IGeneX tested positive for Lyme, a diagnosis Martz agreed with when reviewing Sabrina's long list of ailments. Last spring, he started her on intravenous antibiotics.

Today, with her treatment continuing, she is thinking more clearly and her pain is reduced.

"Just everything is better," she said.


The Browns are believers, but in medical circles, the debate rages on.

Those sticking to conventional wisdom acknowledge untreated Lyme disease can lead to a host of ailments, and a small percentage of patients with acute Lyme disease continue to have problems after standard antibiotic therapy.

There is some evidence those problems are not caused by a continuing infection, but by an autoimmune response, in which a person's immune system continues to respond even after the infection is gone.

There is no evidence, they say, that long-term antibiotic therapy helps.

"That idea, I believe, has been to a large extent discredited," said Dr. Justin Radolf, a professor of medicine at the University of Connecticut Health Center and an authority on the Lyme bacterium.

Some doctors treating chronic Lyme disease may be exploiting patients, Radolf said. Others may be swayed by patients who push for a diagnosis of Lyme over one involving no treatment and little hope.

"People grasp at straws," he said, "and Lyme disease is one they like."

That's not to say there are no cases of persistent Lyme infections. However, Radolf said, "We don't believe most people have it who are getting that diagnosis."

But Dr. Raphael Stricker, a San Francisco hematologist and a leading voice in the other camp, regards chronic Lyme disease as a growing public-health issue. Stricker is president of the International Lyme and Associated Diseases Society, which maintains Lyme disease is prevalent across the United States. Among his patients are best-selling author Amy Tan ("The Joy Luck Club"), who has written about her battle with chronic Lyme disease.

The Lyme debate is politically driven on the government's side, Stricker believes. Some people in the infectious-disease community, he said, maintain that acute Lyme disease is easily treatable and chronic Lyme is rare or nonexistent. "And they don't want to admit that they're wrong."

Despite the gulf separating the sides, Martz shies from calling it a controversy, preferring to say it's a complex issue awaiting answers.

"Unresolved is a very good word to describe this."


21,273 cases of Lyme disease were reported by 44 states and the District of Columbia in 2003. States with the highest incidence of Lyme included Rhode Island, Pennsylvania, Connecticut and New Jersey. Colorado reported one case in 2002 and none in 2003.


- Rocky Mountain Chronic Disease Specialists, Dr. David Martz, 3010 N. Circle Drive, Suite 110. Phone: 264-1500.

- American Lyme Disease Foundation,

- "Learn About Lyme Disease," Centers for Disease Control and Prevention,
www.cdc. gov/ncidod/dvbid/lyme.

- International Lyme and Associated Diseases Society, Phone:

Copyright 2006, The Gazette, a division of Freedom Colorado Information.

Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16

Viesti Kirjoittaja soijuv » La Syys 03, 2011 08:17

Saksalainen lääkäri kyseenalaistaa suomalaisen neurologin ALS-diagnoosin.

"Suomalainen Maria on jätetty kokonaan terveydenhuollon ulkopuolelle, avopuolison, Johnny Strömin mukaan. He ovat omalla kustannuksellaan etsineet apua sairauden hoitoon Saksasta.

Maria sai punkinpureman v.1996.
Oireet alussa: ihomuutos, niskajäykkyys, lihaskramppeja. Mitään veroikokeita ei tehty. Oireet pahenivat vähitellen; huimausta, puhevaikeuksia, nielemisongelmia. Maria lähetettiin HYKSiin jossa hänellä neurologin mukaan on ALS-tauti. Marian sairauskertomusta punkinpureman ajoilta ei luettu, borreliatestejä ei tehty, ALS kudosnäytettä ei otettu, hermoratojen toimintaa ei tutkittu jne.
Lopullisen ALS diagnoosin Maria sai v 2006.

Myöhemmin hänellä todettiin saksalaisen lääkärin laboratoriotesteissä ja tutkimuksissa krooninen Borrelioosi. Pariskunta toivoo saavansa potilasvahinkolautakunnalta päätöksen jonka mukaan Marian kohdalla on tapahtunut hoitovirhe. Oireiden alkaessa, vuonna 2006, häneltä piti ottaa borrelia-testit, mutta niin ei koskaan tehty. Sen sijaan hänelle annettiin kyseenalainen ALS-diagnoosi.

Maria saa parhaillaan antibioottihoidot Saksasta, lääkäri Wolfgang Klemannilta. Hän käyttää neljän antibiootin yhdistelmää. Maria on tähänastisen antibioottihoidon aikana saanut takaisin jonkin verran menettämästään liikuntakyvystä. Mariaa hoidetaan kotona. Hän tarvitsee ympärivuorokautista hoitoa."

Tysk borreliosspecialist ifrågasatte dödlig ALS-diagnos
Deras kamp går vidare i pati entskadenämnden

RASEBORG ? Maria har lämnats helt utanför vårdsystemet. Det säger Johnny Ström, som varit tvungen att på egen bekostnad söka hjälp i Tyskland för sin av sjukdom gravt rörelsehämmade sambo Maria Biström.

Maria Biström diagnosticerades först för ALS men har senare fått diagnosen kronisk borrelios, senborrelios.
Nu hoppas paret att patientskadenämnden äntligen skall ge dem rätt och bekräfta att ett vårdfel har begåtts.
Närmast föregående instans, patientförsäkringscentralen, var en besvikelse. Då beskedet från centralen nyligen kom, var det i sak negativt och mycket allmänt hållet:
?Utgående från de handlingar vi har haft att tillgå har de i Finland genomförda undersöknings- och behandlingsåtgärderna varit riktiga. Godtagbar medicinsk praxis har följts. Fel eller försummelser kommer inte fram. Den nivå som krävs för yrkesmässigt kunnande har uppnåtts.?
I det negativa ersättningsbeslutet sägs vidare, att centralens uppgift inte är ?att övervaka den verksamhet som bedrivs av de yrkesutbildade personerna inom hälso- och sjukvården eller deras förfaringssätt eller beteende. Med hänsyn till detta kan vi inte utreda de klander som har anknytning till dessa frågor?.

Besvär och rättegång
Johnny Ström befarar att man vid patientförsäkringscentralen inte har fäst avseende vid eller kanske inte ens haft tillgång till all relevant information
Han begärde därför en precisering punkt för punkt av vilka dokumenterade vårdåtgärder som legat till grund för bedömningen att inget vårdfel föreligger. Vad han förstår, valde man vid centralen att betrakta hans begäran som ett rättelseyrkande.
Men nu avser han alltså också att besvära sig hos patientskadenämnden över centralens avgörande.
Med bistånd av en jurist i Åbo förbereder han dessutom en rättegång, för att den vägen hävda Maria Biströms rätt till vård i hemmet på egna villkor, rätt till personliga assistenter som hon själv är arbetsgivare för, rätt till ersättning för medicinering, m.m.
Innan paret sökte hjälp utomlands, fick Maria Biström vård vid dåvarande Ekenäs hvc och vid HUCS. Den vården, som nu fått klara papper av patientsäkerhetscentralen, får på många punkter klart underbetyg av Johnny Ström.

Han för numera vid behov hennes talan, eftersom hon har svårt att tala.
Jobbigt att kommunicera är det bland annat efter tröttande behandling, som då VN var på besök. Men på en central punkt gav Maria Biström ändå själv besked, med hjälp av personlig assistent, bokstavstavla, leenden och höjningar på ett ögonbryn: Då hon vårvintern 2006 var intagen på HUCS för neurologisk undersökning, i ett skede då förlamningssymptom redan hade börjat ge sig till känna, var det meningen att borreliaprov skulle tas.
Så skedde dock aldrig. I stället fick hon sin nu ifrågasatta ALS-diagnos

Fyra dyra mediciner
Den medicinering med en kombination av fyra olika antibiotika som den tyske borreliosspecialisten Wolfgang Klemann ordinerat, har enligt Johnny Ström haft synlig effekt. Maria Biström har återfått en aning av den rörelseförmåga hon till största delen hade förlorat.
Men medicineringen är långvarig och kostsam. Den får Ström nu bekosta ur egen ficka, delvis med lånade pengar.
Han berättar att han, innan paret i fjol reste till Tyskland för att söka hjälp, kontaktade hvc och VNS för att säkerställa den fortsatta behandlingen efter hemkomsten till Raseborg. Inga problem, bara medicinerna är godkända i Finland, var beskedet.

Men så enkelt var det inte. Medicinerna i sig är godkända här lika väl som i Tyskland, och ersattes till en början i en form avsedd för intravenöst bruk. Men enligt Ström bytte FPA inom kort ståndpunkt så att enbart medicin i billigare tablettform, som för Biströms del har besvärliga biverkningar, skulle ersättas.
Inte heller staden var beredd att gå in för intravenös medicinering. Det svarar inte mot gängse rekommendationer, är förklaringen som han har fått men inte är beredd att acceptera.
Kämpar vidare
Johnny Ström uppskattar att hans sambos vård hittills kostat honom cirka 45 000 euro. Till det kommer samhällets kostnader för hennes personliga assistenter.
Maria Biström vårdas hemma. Hon behöver tillsyn dygnet runt, också de veckor Ström sköter sitt jobb till sjöss. Då binder vården av henne fem anställda.
Tre assistenter har hon beviljats av stadens handikappservice, för dem är hon själv arbetsgivare. De två övriga tillhandahålls av vård i hemmet, i praktiken med hjälp av tjänster som köps utifrån
Biström och Ström är inte nöjda med hur det här har fungerat. Paret har därför hoppats på ett arrangemang där Biström blir arbetsgivare för samtliga assistenter. Det skulle underlätta koordineringen och bättre säkerställa vårdens kvalitet, anser de.
Men att komma därhän, har inte visat sig vara så lätt.
Så Maria Biström och Johnny Ström får lov att kämpa vidare.


Ett f ästingbett för
f jorton år sedan

Det var för fjorton år sedan, 1996, som Maria Biström blev biten av en fästing.
Vägen till vård gick via hvc. Enligt Johnny Ström gick det snett från början. Man fann aldrig någon förklaring till hennes symptom ? bl.a. utslag, styv nacke, muskelkramper ? och något blodprov som kunde ha påvisat borrelios togs inte.
Symptomen förvärrades småningom. Yrsel och allt större svårigheter att tala och svälja tillstötte, och Maria Biström skickades vidare till HUCS. Där ställde alltså en specialist i neurologi diagnosen ALS, enligt Ström mer eller mindre på stående fot.
? Man borde ha läst hennes sjukdomsberättelse, man borde ha tagit vävnadsprov för ALS, man borde ha undersökt hennes nervbanor och man borde ha tagit ett blodprov för att utesluta borrelios, räknar han upp åtgärder som han anser att situationen då skulle ha påkallat men som aldrig vidtogs.

?Skrevs aldrig in?
Sjukdomen ALS, amyotrofisk lateralskleros, får de nervceller som styr kroppens muskler att gradvis förtvina. Utgången är veterligen alltid dödlig.
Maria Biströms ursprungliga diagnos ställdes 2006.
? Med den typen av ALS lever man ett till ett och ett halvt år, säger Johnny Ström.
Det var genom att läsa allt han kom över om ALS, som Ström kom fram till att symptomen snarare pekade på borrelios som angripit nervsystemet. Men enligt honom ville man vid HUCS inte alls lyssna på det örat. Man motsatte sig en antibiotikabehandling, och då Biström slutligen fick gehör för sina krav blev kuren allt för kort.
? Bara tre månader, nio månader mindre än den allt för korta medicinering som är bruklig i Finland då man behandlar kronisk borrelios, konstaterar Ström. Han tillägger att efter bara ett par veckors behandling sade sig infektionsläkaren, som hade hand om medicineringen, inte se någon effekt av den.
? Assistenter och vårdare märkte en klar förbättring redan då. Men det skrevs aldrig in i epikrisen.

?Nu rullar miljonerna?

Till patientförsäkringscentralen hänsköts Maria Biströms fall i somras med bistånd av en västnyländsk advokat, som tidigare med framgång tagit sig an flera andra vårdfelsfall.

Med kontakterna till Tyskland, till en klinik i Pforzheim och läkaren, borreliosspecialisten Wolfgang Klemann, har paret fått hjälp av en privatpraktiserande västnyländsk läkare.
Läkaren har, med Maria Biströms skriftliga medgivande, gått med på att kommentera hennes fall.
Själv är han inte specialist på senborrelios. Men han finner ingen anledning att ifrågasätta den diagnos som Klemann ställt
Diagnosen ? som enligt Johnny Ström har bekräftats av en specialist knuten till HUCS ? var visserligen inte till hundra procent entydig.
? Men sammantaget skulle den tala för att det är fråga om senborrelios, allt tyder på att det är borrelios hon har, säger läkaren.
Patientförsäkringscentralens beslut kvitterar läkaren med konstaterandet att man där har prövat enbart de åtgärder som vidtagits ? men inte tagit ställning till huruvida åtgärder, som aldrig vidtogs, borde ha vidtagits och huruvida det faktum att de aldrig vidtogs i så fall skall betraktas som ett vårdfel.
?Man får inte låsa sig?
Någonstans i vårdprocessen skedde det en miss, bedömer advokaten.
Läkaren instämmer.
? Man får inte låsa sig vid en diagnos så att man inte märker att det kan vara något annat.
Han håller med Ström om att Maria Biström knappast längre skulle kunna vara i livet om ALS-diagnosen hade hållit streck.
? Med ALS lever man i snitt i tre år.
? Men medicin är ingen exakt vetenskap.
Att ställa en felaktig diagnos, är mänskligt. Men om diagnosen hade följts upp, borde felet ha upptäckts. Då hade man, till små kostnader, kunnat skaffa sig visshet i frågan borrelios eller inte, resonerar advokaten och ställer sig oförstående till att så inte skedde. Eventuellt i missriktat sparnit.
? Nu rullar miljonerna.

Ifrågasatt diagnos, men inget vårdfel

Inte alls ALS,
utan borrelios
Inget vårdfel har begåtts vid vare sig Ekenäs hälsovårdscentral eller vid HUCS, var kontentan av det besked Maria Biström nyligen fick från patientförsäkrings-centralen.

År 2006 fick hon den dödliga diagnosen ALS. Men en tysk specialistläkare bekräftade senare Biströms sambo Johnny Ströms misstankar att det som berövat henne både rörelse- och talförmåga är långt gången borrelios.
Någonstans i vård- processen skedde en miss, bedömer en läkare och en advokat i Västnyland som engagerat sig i fallet. sidorna 8-9

Maria Biström vårdas hemma. Tillsyn behöver hon dygnet runt.


Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16

Viesti Kirjoittaja soijuv » To Loka 13, 2011 07:34

Otteita artikkelista:

"Borrelioosissa esiintyy yleisesti neurologisia ongelmia sillä bakteerin erittämät neurotoksiinit sitoutuvat rasvakudoksiin. Rasvakudosta on runsaasti mm aivoissa ja äärihermostossa. Neurotoksiinit voivat aiheuttaa äkillisen kuuroutumisen, kasvohermohalvauksen, Parkinsonin oireet, MS oireet, hermotulehduksia, kroonista kipua ym neurologisia ongelmia. Kissankynsi näyttäisi korjaavan immuunipuolustuksen toimintaa, tuhoavan mikrobeja ja estävän hermomyrkkyjen vaikutuksen soluihin, entsyymeihin ja hormoneihin.

Tri Joanne Whitakerin potilailla lähes jokaisen Parkinson oireita sairastavan borrelia-testi on ollut positiivinen. Tri Louis Romero kertoo kolmen Parkinson potilaansa olevan lähes oireettomia (99%) TOA vapaan kissankynsihoidon jälkeen.


Larry Powers sairastui Parkinson taudin oireisiin v.1990. Hän käytti taudin hoidossa yleisesti käytettyä Sinemet hoitoa kahdeksan vuoden ajan. Hoidosta huolimatta hänen tilansa heikkeni heikkenemistään. Lopulta hän joutui pyörätuoliin eikä kyennyt syömään ilman apua. Kun hän sai tietää että Parkinson voi johtua borrelia-bakteerista, hän alkoi käyttää TOA vapaata kissankynttä. Kolmessa viikossa hänen tilansa parani niin paljon että hän pääsi pois pyörätuolista ja kävi kalastamassa.

Tom Coffey sai ALS diagnoosin 34-vuotiaana. Kesäkuussa 2001 hän ei kyennyt nielemään sylkeä eikä syömään. Hänelle laitettiin ruokintaletku. Hänen painonsa putosi nopeasti. Tom konsultoi Borrelioosiin erikoistunutta lääkäriä. Tämä aloitti suonensisäisen Tomille antibioottihoidon (Rocephalin) ja Tom tuli kuntoon."

Dr. Joanne Whitaker relates that nearly every patient with Parkinson?s Disease (PD). has tested positive for Bb. Dr. Louis Romero reports that 3 patients with PD are 99 % better after TOA-free cat?s claw (Uncaria tomentosa) therapy.
Case Reports Illustrating The Critical Importance Of Establishing The Diagnosis Of Lyme Disease
Case 1 Larry Powers, a former Mr. America in 1962, became ill with the symptoms of Parkinson?s Disease in 1990. Sinemet therapy was taken for eight years but he gradually became worse. He became confined to a wheel chair and required help with eating. After learning that Lyme Disease might be causing his symptoms of PD he started taking TOA free cat?s claw (Uncaria tormentosa). Within three weeks he was out of his wheelchair and fishing for 100 pound tarpon.
Case 2 Tom Coffey at age 34 developed diplopia, severe hypertension uncontrolled by drugs, and impaired balance. A diagnosis of amyotrophic lateral sclerosis was made. Surgery was performed to correct the diplopia. By June 2001 he was unable to swallow saliva and feeding tube nutrition was begun. His weight had fallen by 100 pounds. Nutritional support from the tube feedings produced slow resolution of the swallowing problem. Consultation with a Lyme expert uncovered the history of a bulls-eye rash after a tick bite. Therapy with Rocephin led to complete recovery.
Case 3 A young male college student developed such severe cognitive difficulties he was forced to drop out of school. A RIBb test was positive for LD and he resumed a normal life after receiving 4 months of antibiotic therapy...
.....Lyme Disease frequently exhibits neurologic abnormalities because the Bb neurotoxins are drawn to the fatty tissue found in the brain and peripheral nerves. As a consequence sudden deafness, Bells palsy, Parkinson?s Disease, Multiple Sclerosis, reflex sympathetic dystrophy, peripheral neuritis, chronic pain, and a multitude of other neurologic disorders may appear.
....The Influence of Toxins from Bb On The Symptoms and Course of Lyme Disease
Nuorilla Parkinsonin oireisiin kuolleilla tehdyissä ruumiinavauksissa on toistuvasti huomattu että aivovauriot eivät ole samanlaisia kuin tyypillisissä Parkinson tapauksissa vanhemmilla henkilöillä. Osa potilaista on saanut vuosikausiksi virheellisen Parkinson, ALS, MS diagnoosin. Osa on saanut nopean avun kissankynsivalmisteesta. Nopea apu ei selity immuunipuolustuksen vahvistumisella eikä valmisteen bakteereja tuhoavasta ominaisuudesta. Borrelia-bakteeri erittää erilaisia hermomyrkkyjä. Kissankynsi (Uncaria tomentosa) näyttäisi estävän hermomyrkkyjen vaikutuksen rasvakudoksiin.
Autopsy examinations of young persons (30s) dying from what appeared to be Parkinson?s disease PD have frequently failed to confirm the basal ganglion damage that would be expected in the classic PD seen in the elderly. Some patients with illnesses of many years duration misdiagnosed as Amyotrphic Lateral Sclerosis, Multiple Sclerosis, and Parkinson?s Disease have made incredible recoveries within periods as short as 24 to 72 hours when placed on TOA-free uncaria tormentosa (cat?s claw) for LD.. This rapid response could not rationally be attributed to improved immune function or bacteriocidal effects on spirochetes. Bb is known to produce a group of neurotoxins. The most sensible explanation for this recovery lies in turning off or blocking the neurotoxic effects of Bb on the lipid containing structures that the Bb neurotoxins are attracted to (central nervous system, peripheral nerves, muscles, joints etc.). This sudden improvement appears to be the result of blockage and inhibition of the neurotoxins[5]. The most important example of a ?Biotoxin Illness? appears to be Lyme Disease[6]. Patients with symptoms of Parkinson?s Disease at a young age caused by neurotoxins would not be expected to show permanent structural destruction in the basal ganglia. These neurotoxins probably act at specific sites such as neurotransmitters-pre- and- post synaptic membranes, altering dopamine, serotonin, GABA, and acetylcholine molecules, thereby blocking surface membrane receptors of various kinds which would interfere with the proper action of enzymes, coenzymes and hormones. This is only one of the damaging mechanisms of action of the neurotoxins.
The TOA free form of cat?s claw (Samento) may have three direct beneficial effects in humans with LD:
Immune modulation (correcting immune dysfunction)
Direct broad spectrum anti-microbial effect on spirochetes. Quinovic acid glycosides found in TAO-free cat?s claw are similar to the quinilones widely used as antibiotics.
Blocking the adverse neurotoxic effects on cells, enzymes, and hormones
Whether the serious lack of energy and fatigue seen in LD are similar to the cyanate[7] induced damage to the mitochondria?s ability to produce energy in the motor neurone found in amyotrophic lateral sclerosis or is due to failure of proper calcium channel function is not clear.

Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16

Viesti Kirjoittaja soijuv » Su Helmi 19, 2012 19:35

Osa Maria Biströmin sairauskertomusta: ALS/Borrelioosi.

Jatkoa Maria Biströmin sairauskertomukseen sekä osa saksalaisen Borrelioosilääkäri Klemannin ohjeista ja hoitoprotokollasta Marian kohdalla. Kertomus julkaistaan asianomaisten toivomuksesta heidän oikeilla nimillään.

Marialla oli borreliatesteissä (immunoblottaus Western blot) kohonneet IgM arvot proteiinien 41 ja 30 kohdalla. Sen lisäksi anamneesissa punkinpurema, ihomuutos ja oireiden lievittyminen antibiooteilla. Näistä syistä johtuen on otettava vakavasti huomioon borrelia-bakteerin osuus monimuotoiseen oireistoon.

Doksisykliini 200mg iv
Minosykliini 100mg per os (=suun kautta tablettina)
Metronidatsoli 1000mg iv + 500mg per os
Klaritromysiini 500mg iv + 500mg per os

Klemann: "Hoito-ohjeeni perustuvat tutkimuksiin ja hoidollisiin suuntaviivoihin jotka kansainvälinen asiantuntijaryhmä, ILADS, julkaisi helmikuussa 2004 (Expert Review of Anti infective Therapy ). Julkaisu löytyy sivulta
http:/ =15&doc id=4836&nbr=3481

Artikkelissa mainitaan mm seuraavia asioita: "Borrelioosi voi kehittyä krooniseksi, uusiutuvaksi ja vaikeahoitoiseksi antibioottihoidoista huolimatta. Siksi hoito tulee aloittaa nopeasti ja tehokkaasti jotta tauti ei pääse kroonistumaan. Antibioottihoito tulee aloittaa vaikka taudista ei ole vielä täyttä varmuutta, mutta vahva epäily. Antibioottihoidon pituutta tai annoksia ei ole pystytty selvittämään varmuudella siksi on parempi käyttää korkea-annoksisia ja pitkiä hoitojaksoja kuten esim tuberkuloosin ja lepran kohdalla on tapana."

Klemann: Puolison mukaan Marian antibioottihoito on jatkunut myös kotona pieniä katkoja lukuunottamatta. Sen lisäksi Maria saa fysioterapiaa. Näkemieni videoesitysten pohjalta voin todeta Marian voinnin parantuneen; käsien, jalkojen ja pään liikkuvuus ovat parantuneet. (2009)

Tri Klemann kirjoitti lausunnon jotta suomalaiset lääkärit ymmärtäisivät Marian vaikean ALS-oireiston olevan yhteydessä borrelia-bakteeriin ja että hän saisi Suomesta apua sairautensa hoitoon.
Johnny Ström 3/4 2012

Alkuperäinen ruotsinkielinen viesti:
Wolfgang Klemann Och Maria Biström
Wolfgang Klemanns medikamentplan för Marias kroniska borrelios och en del av läkarutlåtandet som han skrev.
(Borrelios ? serologi den 28.01.09 laboratorium prof.Huetter et al,Köln) : IGE ? ELISA ? AK ej förhöjt, IGM ? ELISA ? AK negativ i Westerblot påvisas p 41 mindre specifik som IGE ? AK, därjämte p41 mindre specifik och p 30 högspecifik påvisbar som IGM ? AK.
I synnerhet på grund av anamnesen fästningsbett med efterföljande Erythema migrans, förbättring av besvären vid antibiotikabehandling och vid partiell positiv Borrelios ?Serologi , måste man absolut överväga sen borrelios som orsak till den komplexa besvärsbilden. Påvisandet av en mindre specifik och hög specifik IGM antikroppar i den gjorda Borrelios ? serologin talade för en aktiv ovan nämnd sjukdom.
Terapi: Terapeutiskt påbörjades antibiotikabehandling med Doxicyclin 200mg i . v . -0-0 + Minocyklin 100mg per os 0-0-1 + Metronidazol 1000mg i . v . ? 0-500mg per os + Clarithromycin 500mg i . v . ? 0-500mg per os.
Mina terapirekommendationer vid borrelios bygger på Evidence based riktlinjerna för behandling av borrelios Lyme ?Disease, som offentliggjordes i februari 2004 av den internationella expertgruppen , The International Lyme and Associated Dieseases Society, i tidskriften Expert Review of Antiinfective Therapy . Detta vetenskapliga arbete kan ses på internet under
http:/ =15&doc id=4836&nbr=3481.
Där uttalas rekommendationer för diagnos och terapi vid borrelios under kritisk värdering av hittills offentlig gjorda vetenskapliga arbeten.
Utdrag ur Rekommendationerna : Då borreliosen kan utveckla sig som kronisk resp. peristerad, recidiverande eller också behandlingsrefraktär trots användning av antibiotika, måste säkerställandet och behandlingen av sjukdomsbilden vara snabb och aggressiv. Om än hittills inga verkligt väl uppgjorda studier har kunnat göras, förstärker de tillgängliga uppgifterna ett snabbt användande av antibiotika för att om möjligt förhindra utvecklandet av kronisk borrelios. Antibiotika terapin skall redan inledas vid stark misstanke på föreliggande av en dylik diagnos, trots att inget definitivt sjukdomsbevis föreligger. Varken den optimala antibiotika dosen eller längden av den har kunnat standardiseras , men de föreliggande uppgifterna visar på en fördel med högre antibiotika doser och längre behandlingstid, jämförbart med behandlingsuppgifter vid tuberkulos eller också lepra då de sistnämnda sjukdomarna har framkallats av jämförbara långsamt växande alstrare.
Förlopp :
Som patientens äkta man har meddelat, har den rekommenderade kombinationen antibiotika behandlingen ? med vissa avbrott - fortsatt i öppna vården. Utöver detta har en konsekvent fysioterapeutisk vård genom fru Cecilia Löfgren gjorts (hänvisas också till fysioterapeutiskt utlåtande av fru Löfgren av den 19.08.2009). På grund av tillsända videoupptagningar kan jag intyga ,att med dessa åtgärder har en förbättring inträffat , i synnerhet också den aktiva rörligheten i båda händerna, men också i båda benen och huvudet. Dessa behandlingsframsteg rättfärdigar de sedan mars 2009 genomförda kombinations antibiotika behandlingen.
Detta är utdrag av Wolfgang Klemanns Läkarintyg som han skrev för att försöka få de Finlänska läkarna att förstå att Maria var svårt sjuk i borrelios och på så sätt försöka få dem att hjälpa Maria.
Johnny Ström 3/4 2012

Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16

Viesti Kirjoittaja soijuv » Pe Maalis 09, 2012 10:30

KIRJA: Onko ALS borrelia-bakteerin aiheuttama?
Kirja on ladattavissa ilmaiseksi sivulta
Kirja sisältää tieteellisiä tutkimuksia, sairastuneiden kokemuksia jne.

When ALS is Lyme
By Sarah & John Vaughter
© 2011 Vaughter Wellness Ltd.
ISBN 978-0-578-09736-7

This free eBook documents the link between Lyme and ALS.

156 pages, including 57 pages with the stories of 22 people diagnosed with both Amyotrophic Lateral Sclerosis and Lyme disease, including links to their extensive blogs. Eight died, three are still sick and eleven achieved a full cure.

In addition to these case reports in the patient's own words, the book contains more articles than published on this site, with footnotes linking to almost a thousand pages of supporting material in many dozens of PDF's.

Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16

Viesti Kirjoittaja soijuv » Su Maalis 18, 2012 21:42

ALS/Borrelioosiin sairastunut tri Martz tuli työkuntoon antibiooteilla. Hänelle myönnettiin tutkijapalkinto ALS/Borrelioosia käsittelevästä työstään. Martz on kansainvälisen Borrelioosijärjestön ILADSin jäsen. ... -martz-md/

2011 Research Award ? David Martz MD

David Martz, MD is the 2011 recipient of the Invisible Disabilities Association Research Honors Award. Dr. Martz has been chosen based upon his extensive ALS-Motor Neuron Disease and Lyme disease research as a physician and a board member of the International Lyme And Associated Diseases Society (ILADS). Born out of his personal experience with ALS, Dr Martz has a passion to discover possible treatments for patients living with these illnesses.

The International Lyme and Associated Diseases Society (ILADS) is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases. ILADS provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.

Above Video of Dr. Martz sharing his personal battle and ground-breaking research at the 2011 IDA Awards Banquet, where he received the Research Award.

Dr Martz is a community physician who practiced Internal Medicine-Hematology-Oncology in Colorado Springs for 30 years (1970-2000). He has been an assistant professor of clinical medicine at Colorado University Medical Center in Denver for over 20 years, and a member of the Admissions Committee for over 10 years. He was also the 1994-1995 President of the Colorado Medical Society.

His personal encounter with ALS-Lou Gehrig?s Disease was published in Acta Neurologica Scandinavica in 2006. To summarize, in April, 2003, he became ill with concurrent symptoms of ALS plus systemic Lyme-like

symptoms of arthritis, total body pain, and profound fatigue. Traditional Lyme tests were repeatedly negative, but after 9 months he was found to have the DNA of Borrelia ? the Lyme bacteria ? in his system. By that time he required assistance in dressing, arising from a chair, rolling over, and climbing stairs. He could walk about 100 feet and stand about 5 minutes. Atrophy of leg and shoulder muscles was obvious. A definitive diagnosis of ALS was confirmed by his academic neurologist and his life expectancy was estimated at about 2 years.

Based on the evidence of the positive test, a Lyme-focused doctor started him on extended complex antibiotic therapy, and the response was dramatic. Within 2 weeks the arthritis and body pain had resolved permanently. At 1 month his stamina had improved from 30 minutes to 3-4 hours. By 2 months he could cross both legswithout help, and by 3 months he could arise from a chair without assistance. At 12 months he was functioning at 60-70% of baseline strength and stamina, and all clinical signs of ALS-MND except muscle atrophy and weakness had resolved. Currently ? eight-plus years after onset of ALS symptoms ? he remains functional at 60-70% of baseline strength and stamina, but with incomplete resolution of the muscle atrophy.

One year after starting antibiotic treatment he opened a ?Lyme-focused? research-driven medical practice for two and a half years. Assisted by other part-time providers, the office saw about 850 patients with possible Chronic Lyme Disease (CLD), including 90-100 with ALS-like disease. Based on those findings, articles currently in preparation for publication include:

8-year follow-up case report of antibiotic-responsive ALS-like illness;
Objective functional improvement in 15 patients with ALS-like disease;
Antibiotic-responsive Lyme-like illness in 40 rural Coloradoans;
Outcomes of 90 ALS patients treated with extended antibiotic therapy;
Case report of antibiotic response of biopsy-proven pulmonary sarcoidosis;
Minimal complications of extended antibiotic therapy in 330 patients; and,
A clinical study of 850 patients treated with extended antibiotic therapy for ?Chronic Lyme Disease?.

Dr Martz is deeply grateful for his own unique reprieve from ALS, for the opportunity to explore application of his personal experience in a clinical research setting, and for the privilege of sharing that experience with the IDA community.

Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16

Viesti Kirjoittaja soijuv » Ti Huhti 10, 2012 17:14

Ei tutkimustietoa vaan yhden tohtorin omakohtainen kokemus.
Tri Massie halvaantui kokonaan ja sai ALS diagnoosin. Oireet johtuivat borrelia-bakteerista. Hän aloitti PEMFT hoidon.

PEMFT and Lyme Disease
Dr. Sue Massie, ND

has a practice in Fair Haven,
New Jersey where she works
with many clients with Lyme
disease and other chronic conditions.
She, her husband,
and all six of her children have
had their own personal journeys
with Lyme.

Dr. Massie's
own Lyme disease resulted in
total paralysis and a diagnosis
of ALS; while her husband
required heart surgery.

Dr.Massie has said, "Disease can
be a great motivator to learn
about alternative approaches
to wellness." In her search for
these alternatives, she began
using the PMT-100 in her practice.
In the simplest terms,

Dr. Massie explains PEMFT as
"a direct current which runs
from the wall to the machine
and from the machine to the
body. All cells in the body are
like little batteries. Some cells
have a full charge; while other
cells may only have half a
charge, and others may have
no charge at all. PEMF therapy
recharges these batteries
and gives the body critical
energy. When the cellular
battery is recharged, we simply
feel better. PEMF therapy
has been nothing short of a
miracle for me, my family, and
my patients."
For practitioners such
as Dr. Massie, improving the
body's terrain is a key component
of recovering health.

Our environment has become
more and more toxic with
time and, as a result, so have
we. Microbes flourish in toxic
environments. Thus, supporting
detoxification is an
absolute necessity in any
attempt to regain wellness.

In Lyme disease, both
hypercoagulation and hypoperfusion
are common challenges.
Hypercoagulation is
often used by the microbes as
a defense mechanism which
makes effective treatment
more challenging.
Hypoperfusion occurs when
there is decreased blood flow
through an organ such as the
brain. Suboptimal blood flow
to the brain may be a contributor
to depression, mood disorders,
"brain fog", and many
other symptoms commonly
associated with Lyme disease.
Many people with
Lyme disease experience joint
pain and cartilage damage or
deterioration. This can result
in degenerative joint problems
which may lead to the use of
anti-inflammatory drugs, or
even steroids, to minimize
pain and discomfort. Systemic
inflammation is almost universal
in Lyme disease. The body
is unable to heal properly
when it is in a constant state
of pain and inflammation.
Fatigue and depleted
cellular energy are common
hallmarks of many chronic illnesses
including Lyme disease.
In a chronic condition, which
may last for years or even
decades, the body's ability to
repair itself is impaired, and
ongoing decline may result.
Depression, anxiety,
and insomnia are common
challenges in Lyme disease.

The brain is an electromagnetic
organ, and a lack of magnetism
can result in numerous
brain-related symptoms. In
neurological Lyme, nerve
involvement, including
demyelination may be present.
PEMFT can help to
promote detoxification,
improve circulation, reduce
pain and inflammation,
increase cellular energy,
improve depression, anxiety,
and insomnia, repair nerves,
and support the body's ability
to repair and regenerate.

PEMFT has been a
significant step forward in Dr.
Massie's practice with chronic
conditions such as Lyme disease,
autism, Chronic Fatigue
Syndrome, Fibromyalgia,
Parkinson's disease, Multiple
Sclerosis, ALS, cancer, and
chronic pain.

Dr. Massie has
said that her experience with
the device has been "a
tremendous blessing to be
able to relieve the severity of
pain and discomfort for her
patients and to stimulate their
energy", and she feels that the
PMT-100 from NuBioMag at
PMT-100 is "the best tool I
have found in over 15 years."

Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16


Viesti Kirjoittaja soijuv » Ke Maalis 18, 2015 17:36

Saksalaisen Christinen henkilökohtainen kuvaus omista Borrelioosi/ALS - oireistaan ja hoidoistaan. Hän oli ennen parantumistaan ollut pyörätuolissa useamman vuoden. Käänteentekeväksi hoidoksi osoittautui kantasoluhoito jota hän sai Intiassa.

Christine Anne Kiefer-Hellmund ... 76369d1_00

Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16


Viesti Kirjoittaja soijuv » Pe Kesä 19, 2015 08:35

Ei tutkimus, mutta mielenkiintoinen Borrelioosiin/ALS oireisiin sairastuneen kertomus: ... sease.html

One Woman’s Journey Through Lyme
by Sue Massie (N.D. Candidate)

Mysterious Symptoms for Years
At 42, with six lovely children and a wonderful husband, I thought my life was over! I was very ill with migraines, slurred speech, difficulty swallowing, atrophy in my muscles, excruciating pain throughout my body, memory loss, light and noise sensitivity, etc. These are just a few of the symptoms I suffered from on and off over the years, and they were progressively getting worse.

Paralyzed From The Neck Down
I eventually became paralyzed from the neck down, and developed an ALS-like condition.My husband was also very ill with debilitating symptoms including “buggy” eyes, migraine headaches, rib pain, radiating jaw pain, chest compression, fatigue and a racing heart (intermittent). We spent years trying a number of neurologists, cardiologists (including Yale), and all kinds of specialists, only to be given a new diagnosis with each visit. These included TIAs, Grave’s disease, possible MS, and even stress. Finally a Lyme-literate neighbor suggested my husband might have Lyme disease. I thought it was a ridiculous idea because my dad was supposedly the first case diagnosed back in 1980 in Monmouth County, New Jersey, and he was just fine (or so I thought). Our neighbor handed me the list of symptoms, and my husband had just about every one of them! I asked for her doctor’s name and we saw him immediately. He diagnosed my husband with Lyme disease and treated him with long-term antibiotic therapy. Six months after his diagnosis, I was also tested and diagnosed, and I started treatment as well. Five out of six of our children have now been diagnosed with Lyme disease* and had to be put on a special educational program to help them with their studies. (Lyme can often affect children and contribute to ADD, ADHD, memory problems, dyslexia, anger outbursts, fatigue, etc.)

102 ALS Patients Tested Positive For Lyme - In Treatment

I have talked with over 8,000 people with Lyme. 102 of these cases are ALS-diagnosed patients who were properly tested for Lyme and came uppositive. I feel that people who are diagnosed with ALS/Lou Gehrig's disease, Multiple Sclerosis, Alzheimer’s, Lupus, Fibromyalgia, Chronic Fatigue and many other neurological and degenerative diseases, could actually have Lyme disease. To date, there is no definitive, 100% positive test for Lyme disease. However, patients should request (from a Lyme-literate doctor) to have a PCR test (to determine genetic material of Borrelia) or a Western Blot blood test (antibody assay) done by Igenex Labs in California ( Most doctors are following the diagnostic protocol of doing a Lyme titre or ELISA test, which are not accurate. If a patient who has Lyme disease actually tests positive using the Lyme titre or ELISA test, their doctor would then order a Western Blot blood test. According to the Center for Disease Control, a patient must have a minimum of five bands (specific numbers and bands are how they read these tests), in order to be labeled positive for Lyme by Western Blot. Another important consideration is that Lyme antibodies must be present for a positive result, and if the patient has been taking steroids, Advil, Motrin, or other anti-inflammatories or antibiotics, this could cause a false-negative result. For this reason, patients should be clear of all OTC’s and prescription medications for a minimum of six weeks before testing, but even this cannot guarantee an accurate result.

My Lab Results Would Have Been Considered Negative
After testing, I only had one band - number 41, which is the “flagellin” (or tail) of the spirochete, specific for Borrelia bacteria (Lyme), so I would have been told that I was negative. Quite often, patients have to be diagnosed by symptoms alone. I know that most people reading this story probably know of someone who has been to various doctors, and is suffering without an adequate diagnosis, and people just label them as being a hypochondriac, etc.

Initial Signs Often Missed
Lyme disease is not necessarily associated with a “bull's eye rash and sore knees.” Less than 20% of patients ever see the tick, and less than 30% get the classic bull's eye rash. Tucking your pants in your shoes or wearing white so you can see ticks does not provide full protection. I was the only one in my family that saw a tick on the back of my hand, and only my one son had a rash (not a bull's eye, but more like impetigo all over his body). Co-infections are also a big part of Lyme, meaning not only do the tiny ticks infect you with Borrelia bacteria, but there is also possible infection with Babesia, Ehrlichia, Bartonella, mycoplasma, and the conditions of Epstein-Barr and HHV-6 (human herpes-6) viruses.

Dedicated To Helping Others
I have talked with thousands all over the U.S., including Hawaii and Alaska, Great Britain, Germany, Australia and even Japan. I am now a Certified Natural Health Professional. My health has improved about 95% and I have been off antibiotics for 2 years (after being on a multitude of them for 3 1/2 years). It has been a long journey for me, but now I am dedicated to helping others heal from Lyme.

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