BORRELIOOSI/KROONINEN VÄSYMYSOIREYHTYMÄ/FIBROMYALGIA

Asiantuntijana Soile Juvonen TTT

Valvojat: Bb, Sailairina, maranoma, Tiina

BORRELIOOSI/KROONINEN VÄSYMYSOIREYHTYMÄ/FIBROMYALGIA

ViestiKirjoittaja soijuv » Pe Heinä 15, 2011 22:50

Borrelioosia sairastavilla esiintyy usein voimakasta uupumusta. Tutkimuksen mukaan (2011) kroonista väsymysoireyhtymä-oiretta sairastavista henkilöistä suurin osa hyötyi antibioottihoidosta; 209:sta henkilöstä 88% (188) hyötyi antibioottihoidosta. Henkilöt olivat borrelia-bakteerille seronegatiivisia ja heillä oli ollut fatiikkia yli 6 kk. Tutkimuksen mukaan merkittävä osa borrelia endeemisillä alueilla asuvista ihmisistä saa krooninen väsymysoireyhtymä diagnoosin. Heidän oireidensa syynä saattaa kuitenkin olla krooninen borrelia-bakteerin aiheuttama infektio.

Bakteriologi, infektiotautien asiantuntija professori Sam Donta on Bostonin lääketieteellisen tiedekunnan Borrelioosiyksikön johtaja. Dontalta pyydettiin selvitystä Borrelioosin ja kroonisen väsymysoireyhtymän (CFS) sekä fibromyalgian (FM) yhteydestä toisiinsa. Joidenkin mukaan borrelia-bakteeri aiheuttaa esim. näitä oireita. Toisten mukaan borrelia-bakteeri ei aiheuta Borrelioosin kroonisia oireita vaan ihmiset sairastavat nimenomaan kroonista väsymysoireyhtymää ja/tai fibromyalgiaa. Tri Dontan mukaan kaikkien oireet ovat hyvin samanlaiset. Hän on hoitanut satoja kyseisistä oireista kärsiviä. Kliinisesti oireistoja on lähes mahdoton erottaa toisistaan. Kroonisen Borrelioosin oireet ovat samanlaiset kuin kyseisissä oireistoissa; fatiikki, neurokognitiiviset häiriöt, lihas-/nivelkivut jne. Ainoa ero on Borrelioosissa joillakin esiintyvä rengasmainen ihomuutos. Suurimmalle osalle Borrelioosiin sairastuneista ei kuitenkaan ole tullut ihomuutosta tai he eivät muista nähneensä sellaista. Noin 30 -50%:lle tartunnan saaneista kehittyy krooninen Borrelioosi. Monille aiemmin oireettomille tauti aktivoituu uudelleen esim. trauman, stressin, raskauden, leikkauksen, antibioottihoidon, jonkin muun infektion tms seurauksena. Tauti saattaa aktivoitua myös esim. borrelia-rokotteen seurauksena. [/b]

http://www.iacfsme.org/BULLETINWINTER20 ... fault.aspx

RETROSPECTIVE ANALYSIS OF A COHORT OF INTERNATIONALLY CASE
DEFINED CHRONIC FATIGUE SYNDROME PATIENTS IN A LYME ENDEMIC AREA
Samuel Shor1, MD, FACP
Principle Investigator:
1Samuel Shor, MD, FACP
Associate Clinical Professor
George Washington University Health Care Sciences
Internal Medicine of Northern Virginia
1860 Town Center Drive #230
Reston, Virginia 20190
Phone 703 709-1119
Fax 703 709-7496
samshormd@gmail.com

ABSTRACT
Background: Chronic fatigue syndrome is a diagnosis of exclusion for which there are
no markers. Lyme disease is the most common vector borne illness in the United States
for which chronic fatigue is a frequent clinical manifestation. Intervention of patients with
Lyme disease with appropriately directed antimicrobials has been associated with
improved outcomes.
Methods: An arbitrary date was chosen such that all patients registered in the database
of the practice of the PI, which is located in the Lyme endemic area of Northern Virginia
area were reviewed. The diagnosis of clinically significant fatigue > 6 months was
chosen. Inclusion criteria required fulfilling the International Case Definition for CFS.
Results: Of the total 210 included in the analysis, 209 or 99% were felt to represent a high
likelihood of ?seronegative Lyme disease.? Initiating various antimicrobial regimen, involved
at least a 50% improvement in clinical status in 130 or 62%. Although not achieving the 50%
threshold according to the criteria discussed, another 55 patients subjectively identified a
beneficial clinical response to antimicrobials, representing a total of 188 or 88% of the total
identified as having a high potential for seronegative Lyme disease.
Conclusions: A potentially substantial proportion of patients with what would otherwise
be consistent with internationally case defined CFS in a Lyme endemic environment
actually have a perpetuation of their symptoms driven by a persistent infection by
Borrelia burgdorferi. By treating this cohort with appropriately directed antimicrobials, we
have the ability to improve outcomes.
Bulletin of the IACFS/ME. 2011;18(4):109-123. © 2011 IACFS/ME
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Fibromyalgia, Chronic Fatigue Syndrome and Lyme Disease


by Bonnie Gorman RN


Dr Sam Donta presented a comprehensive, compassionate, cutting-edge lecture to Mass. CFIDS/FM Association members on November 3rd, 2002. His topic was "The Interface of Lyme Disease with CFS and FM: Diagnostic and Treatment Issues." Dr. Donta is a nationally recognized expert on Lyme disease. He is the Director of the Lyme Disease Unit at Boston Medical Center and a Professor of Medicine at BU Medical School. He is a bacteriologist and an infectious disease specialist, who views CFS and FM from that vantage point. He is also a consultant to the National Institutes of Health (NIH), and presented at NIH's scientific meetings on CFS research.


What does Lyme disease have to do with CFS and FM you might be asking? Some people believe that Lyme disease may be one of the causative factors iKliinisesti oireistoja on lähes man both CFS and FM. Others believe that some CFS and FM patients are really misdiagnosed chronic Lyme disease patients and vice versa. Some believe that there is no such thing as chronic Lyme disease, instead these patients actually have CFS or FM. We asked Dr. Donta to help sort all this out.

Parallel Symptom Patterns

Dr. Donta presented the symptom lists for chronic Lyme disease, chronic fatigue syndrome (CFS), fibromyalgia (FM), and Gulf War Illness (GWI). He pointed out the similarities between them, and found there were few differences. He has treated hundreds of patients with these illnesses. He found that CFS and GWI have identical symptoms, and FM is only distinguished by a positive tender point exam, that is often positive in CFS and GWI as well. Clinically it is almost impossible to distinguish or differentiate these illnesses.

He has concluded that chronic Lyme disease is remarkably similar to CFS, FM, and GWI. These multi-symptom disorders have similar symptom patterns consisting of fatigue and neurocognitive dysfunction, along with numerous other symptoms that probably relate to altered neurological function. Musculoskeletal symptoms may be more frequent in FM and in some patients with chronic Lyme than in CFS, but the definition of CFS and GWI also includes muscle aches (myalgias) and joint aches (arthralgias).


Lyme Disease Symptoms

Flu-like illness, fever, malaise, fatigue, headache, muscle aches (myalgia), and joint aches (arthralgia), intermittent swelling and pain of one or a few joints, "bull's-eye" rash, early neurologic manifestations include cognitive disorders, sleep disturbance, pain, paresthesias (including numbness, tingling, crawling and itching sensations), as well as cognitive difficulties and mood changes.

The only symptom difference in Lyme disease is the expanding circular rash with a clearing area and center resembling a "bull's eye." He pointed out that Lyme has multiple types of rashes and half of the rashes are not typical, they may not even include the "bull's eye" rash. They can appear from two day after the bite, then go on for a week or so. Patients who are infected may not develop or see the rash, and may not develop any future symptoms. In studies, only one third of the patients were actually aware of their tick bites.

30-50% of acute Lyme disease patients went on to develop chronic Lyme disease. Additionally, some previously asymptomatic patients may reactivate their infection following various stressors such as trauma, surgery, pregnancy, coexisting illness, antibiotics treatment, or severe psychological stress. The Lyme vaccine can also reactivate their infection. Similar triggers such as trauma, surgery etc. are known to precipitate CFS, FM and GWI as well. This is not a new phenomenon with infectious diseases. We know infectious diseases (i.e. TB) will reactivate after illnesses or surgery-- any stressor.

Dr. Donta reported on the effects of gender on host susceptibility in Lyme disease, CFS, FM and other multi-symptom diseases. In all these disorders, women appear to be more affected than men, usually at about 2:1 ratios. He noted that neural cells contain estrogen and progesterone receptors, and that herpes viruses can utilize estrogen receptors to gain access to the reservoir in the cell nucleus. Treatment of chronic Lyme disease also seems to be gender-dependent to some degree, with men generally having more speedy and complete recoveries compared to women. He concluded that gender relationships are known for a number of infectious diseases, so it would not be surprising that such a relationship exists for chronic Lyme disease, CFS, FM and other multi-symptom disorders.

Etiology

Lyme Disease: A distinct difference between Lyme disease, CFS and FM is that the origin of Lyme is clear. Lyme disease is caused by spirochetal bacteria transmitted by the bite of an infected deer tick. This bacteria is the Borrelia burgdorferi bacteria. It was identified in the late 1900s in Europe. The US was late to recognize what Europe had described. Lyme disease was not formally identified by the CDC until 1977 when arthritis was observed in a cluster of children in and around Lyme, CT. Since that time Lyme disease has been identified in many states. The CDC reports that it causes more than 16,000 infections per year in the US. Some researchers feel that the prevalence is higher than that.

CFS and FM: Dr. Donta feels that Lyme disease is an important cause of CFS and FM. In addition to Lyme, there are a number of other possible causes. The evidence is still circumstantial though. Epstein-Barr virus (EBV), the major cause of infectious mononucleosis, continues to be debated as a cause of CFS. It is uncertain whether EBV can cause symptoms other than fatigue, such as myalgias and arthralgias that are not seen during acute or reactivated EBV infection in patients who are being immunosuppressed, but it remains possible that EBV could cause one type of chronic fatigue disorder. There are also other herpes viruses i.e. HHV6 that are being evaluated as potential culprits.

Dr. Donta reported that recently recognized species of Mycoplasma (Mycoplasma fermentans, Mycoplasma genitalium) have been implicated in CFS, FM and GWI. These same bacteria have also been implicated as causative agents of rheumatoid arthritis, based on PCR-DNA evidence in patients with these disorders in which 50 percent are found to have the DNA of the Mycoplasma in circulating white blood cells, compared to 5-10 percent of a normal population. Whether the presence of this DNA represents past exposure or ongoing infection remains to be resolved. No long-term studies have yet been performed in patients with CFS and FM to determine whether the finding of Mycoplasma DNA persists over months or years or whether such patients have any evidence of other infection such as Lyme disease or infection with Chlamydia species.

Central Nervous System Involvement

Dr. Donta reported that in Lyme disease, the nervous system seems to be the primary target for the bacteria causing the disease. Patients with Lyme disease express many neurologic symptoms such as pain, paresthesias including numbness, tingling, crawling and itching sensations, as well as cognitive difficulties and mood changes. Even the joint pains and occasional arthritis appear to be neuropathic in origin, as anti-inflammatory agents such as ibuprofen and other nonsteroidal anti-inflammatory drugs (NSAID) have little if any effect on the pain. Experimental evidence from animal models also affirm the localization of B. burgdorferi DNA to the nervous system. Dr. Donta postulates that the disease mechanisms could involve inflammatory responses, autoimmune responses or toxin-associated disruption of neural function. Any inflammatory responses appear to be weak, and there is no compelling evidence that Lyme disease is a result of immunopathologic mechanisms.

Commenting on his research, Dr. Donta speculated that if they are correct, and lyme bacteria is a nerve toxin that interferes with the transmission of the nerve impulse, then that is all you need to impede the normal flow of information. There is a lot of cross-talk in the nervous system. This toxin will decrease that cross-talk causing delayed responses resulting in cognitive problems-- the brain fog so commonly described in all these multi-symptom disorders.

Although the disease pathways for other possible causes of CFS and FM have not been defined, Dr. Donta postulates that the central nervous system would appear to be a logical target for other pathogens or other disease processes. These illnesses clearly affect the brain and are bound to cause many neurological manifestations. Any changes in immunologic function would not appear to be sufficient to explain the various symptoms, and are likely to be secondary to other disease processes.

He feels we have been thinking too simplistically about finding whole organisms replicating in chronic diseases. It is highly likely that there is no single cause for these illnesses. It's more likely that there are multiple causes-- different organisms causing the same final set of symptoms. Researchers need a better algorithm to study these fatiguing illnesses. We need to be more inclusive, rather than trying to separate the illnesses. Sometimes in medicine, if an illness is too complex to study, research interest dwindles. We have the technology to do the research, but there hasn't been the will and the momentum to get it done.

Clinical Diagnosis


Dr. Donta reiterated that the diagnosis of Lyme disease is primarily based on clinical grounds, just as with CFS and FM. Once other disorders are ruled out, the combination of symptoms over months is sufficient to make a presumptive clinical diagnosis. The diagnosis of Lyme is made easier if a typical rash is present during the early phase of infection. After that, it is difficult to distinguish the flu-like illness that can occur a few weeks later, or can recur over a number of months.

Dr. Donta reported that some patients develop severe headaches and an aseptic (infection free) meningitis, which frequently is diagnosed instead as viral meningitis. If a Bell's palsy occurs (drooping of one side of the face), the possibility of Lyme disease is likely. If an unprovoked arthritis occurs, causing swelling of a single joint, especially the knee, but sometimes more than one joint, then the possibility of Lyme disease should also be given high consideration.

He emphasized that it is the chronic phase of the disease that causes most problems for physicians and patients, because of the lack of objective signs and the presence of so many symptoms that it causes some doctors to attribute psychological reasons for the patients' symptoms. Many patients then receive a diagnosis of CFS or FM, when they may have underlying chronic Lyme disease as the cause of their symptoms.

Diagnostic Tests

Tests for Lyme disease, like tests for other infectious diseases, are often confusing and circumstantial, and their analysis and interpretation has often been flawed. In infectious diseases you do a Western blot test to see if you have a specific reaction. Western blot separates out proteins antigens of an organism you are looking for. It tells you if a person has been exposed. It is not a direct measurement of the organism. It is a measurement of whether the person has antibodies to it. Antibody tests are useful in the early stages of illness as with other acute infectious illnesses. Once the illness is in a chronic phase, antibody tests are not useful.

Just as viruses change from year to year, we know the Lyme bacteria mutates. There are a number of organisms that can shift their surface protein in a matter of hours and that is how they evade detection and patients test negative. These organisms attach themselves to proteins and conceal themselves-- creating a cloaking mechanism that defies detection. This allows them to get where they want to go-- the nervous system. Once they are inside a cell, the immune system can't see them.

That said, Dr. Donta explained that lab tests have been helpful is some patients with Lyme disease, especially those with arthritis, in whom there are stronger antibody responses than in those with the chronic, multi-symptom form of Lyme. The criteria for the laboratory diagnosis has been patterned after the arthritic form of the disease, and not the chronic form; as a result, there are many physicians who are misinformed about the test's lack of value in chronic Lyme disease. The Lyme Western Blot is helpful when it shows reactions against specific proteins of B. burgdorferi, but can be negative in 25-30 percent of patients who otherwise have chronic Lyme disease.

PCR-DNA tests for Lyme in blood, urine and spinal fluid are rarely positive, most likely because the bacteria and their DNA are not present in those body fluids, but inside nerve cells. Additionally, PCR-DNA studies are very easy to contaminate.

In chronic Lyme disease, the MRI exam of the brain is positive in about 10-20 % of patients. It can show some white spots (unidentified bright objects- UBO) in various areas, similar to those seen in multiple sclerosis (MS), a neurologic disease of unknown cause that has some overlapping symptoms with Lyme disease, CFS and FM, such as the numbness and tingling or paresthesias. (There are also positive MRI findings in CFS and FM patients as well.)

Dr. Donta reported that the brain SPECT scan shows some changes in blood flow to various parts of the brain, primarily the temporal (cognitive processing) and frontal (mood) lobes in about 75 percent of patients with chronic Lyme disease. Patients with CFS have also been reported to have some brain SPECT scan changes, frequently involving the occipital lobe. No comparative studies have been made among patients with chronic Lyme disease, CFS and FM. The mechanisms underlying these changes remain to be defined, but may be due to a mild vasculitis (inflammation of blood vessels) or to a signaling problem within the nerve network of the brain in those specific areas. It is promising that these changes are reversible in most patients treated with antibiotics that appear to be effective in treating the chronic Lyme disease. These MRI changes are often slow and may take a year to reverse themselves.

These are covert organisms we are dealing with. We need more direct detection methods for blood, spinal fluid and other body fluids. How do you detect organisms in spinal nerve roots or brain? Right now we can't. Nobody is going to biopsy patients. We need an illness registry so we can do direct detection studies, particularly of the brain, after death.

Treatment: Persistence Pays Off

Dr. Donta reported that there are lots of drugs that are active against the Lyme bacteria in the test tube, but the big question is whether the drug can get to the bacteria? Lyme bacteria lives in the cells of the nervous system, perhaps other cells. Dr. Donta has experimented with various intracellular-type antibiotics. He reviewed his journey through various antibiotics. After listening to his patients he decided that some antibiotics were better than others. He then looked at clarithromycin (Biaxin) and azithromycin (Zithromax) which he found had powerful activity against Lyme bacteria in a test tube.

But the antibiotics, by themselves, did not seem to do any good. He found that you need to change the cellular pH (the degree of acidity or alkalinity), making it more or less acidic, to maximize the effectiveness of the antibiotic. This allows the antibiotic to work better i.e. doxycycline seemed to work better when the pH was higher. Dr. Donta has experimented with various agents to adjust pH i.e. amantadine (used to treat flu) and plaquenil (used to treat malaria). He just submitted proposals to NIH to study various agents to determine which is most effective.

Dr. Donta emphasized that the most important aspect of treatment is that it must be long-term-- 12-18 months, sometimes 24-36 months. This length is not unusual in the treatment of infectious diseases i.e. TB. In the first few months of treatment patients can expect an adverse reaction, symptoms will increase and you'll feel worse. You need to be able to hang in through this period, and allow 3-6 months of a treatment trial to determine if it is working. The earlier in the disease process that you start on treatment, the more successful it is. The more chronic the condition the less successful it is, and you'll need to treat over a longer period of time. This treatment resulted in substantial improvement and cures in 80-90% of patients with chronic Lyme disease. There are 10-20% who do not respond-- generally those with a strongly positive Lyme test.

Dr. Donta reported that similar results have been found in some patients with CFS and FM of unknown cause, supporting the hypothesis that some patients with CFS and FM have an underlying infection responsive to those antibiotics. Antibiotic trials in CFS and FM have been limited to one month, a duration that is inadequate to properly evaluate the potential of certain antibiotics to have a positive effect on the disease. Additional studies, examining both potential etiologic agents of CFS and FM as well as treatment trials should lead to a better understanding of both the cause and treatment of patients with CFS and FM.

Q&A

Q: If the Lyme lab tests are inadequate and the symptoms are the same as CFS and FM, why not just treat all CFS and FM patients with the Lyme protocol?

A: You want to be conservative with your medicines. I think we have enough info now to tell CFS and FM patients to consider going on a 3-6 month trial of antibiotics and see if you're better. Consider all the other meds you are already taking that just treat symptoms and not the cause of your illness. They all have side-effects that can be hazardous. Is it worth it to you to consider a primary treatment aimed at a cause? There will be resistance from some MDs. They need to be educated. Your primary MD will need to consult an LD specialist re the treatment protocol.

Q: Do patients with Lyme disease also have bowel and bladder problems like interstitial cystitis (IS) and irritable bowel syndrome (IBS)? How are they affected by treatment?

A: Yes, many patients with Lyme have IS and IBS. He was surprised how much the bowel disorders affected treatment. Tetracycline generally helps the IBS. Plaquenil can sometimes irritate the bowel.

Q: I have received different results for the western blot Lyme test. Why?

A: Lyme test results are not reproducible from one lab to the next. You will get different findings from different labs. The western blot is not a great test for Lyme since the responses to Lyme bacteria are already very small responses.

Q: I've been sick for 15 years with CFS and my Lyme test was negative. Is there any value in treating now?

A: If the test was negative but you have the complex of symptoms and there is no other obvious answer, why not give antibiotics a try.

Q: I had the Lyme vaccine then got Lyme symptoms. Why?

A: Lyme vaccine was pulled from the market because it was causing reactions and reactivating a slow onset of Lyme disease.

Q: What are the ocular problems in Lyme?

A: He sees optic neuritis, similar to that seen in atypical MS patients.

Q: Is there any Lyme connection to cutaneous lymphoma?

A: He has looked closely for any cancer/ Lyme associations, but has not seen many.

Q: Is there a connection with thyroid problems?

A: Thyroid problems are a very common co-existing condition with Lyme, as they are with CFS.

Q: How do I differentiate itching from allergic reactions?

A: The same sensory nerve fiber pathways that carry pain carry itching, numbness, tingling etc. Rash is common symptom. Rashes could be caused by medications, especially if they are body-wide. Is it an allergic reaction or hypersensitivity reaction? Get a complete blood count (CBC) with differential. Eosinophils will be elevated if allergic reaction. If not, then it's a hypersensitivity reaction. Treatments are similar.

Q: How do we get funding for research to advance these illnesses?

A: He stressed how important it is to combine advocacy and research efforts. Ultimately it will be a political solution. Get active legislatively in DC. The CFS Coordinating Committee is a very good forum. Lyme does not have anything like that. Groups need to work together, not fight with each other. There should be a coalition of all these groups. We also need to show insurance companies the benefits of primary treatment to patients, as well as to insurer's bottom line.

http://www.canlyme.com/fibrocfslyme.html
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ViestiKirjoittaja soijuv » Ma Loka 10, 2011 11:25

Kroonisen väsymysoireyhtymän aiheuttajasta ei ole varmaa tietoa. Oireiden syyksi on epäilty useita bakteereita ja viruksia.


http://www.latimes.com/news/opinion/com ... 1674.story


Op-Ed
The mystery of chronic fatigue syndrome
Most health professionals have finally acknowledged that it's a real and serious illness. But we still don't know what causes it.

By Jay A. Levy and Daniel L. Peterson

September 30, 2011, 12:00 a.m.
For more than 100 years, medical literature has contained reports of a debilitating illness that causes prolonged fatigue, memory loss, headaches, cognitive problems and issues with digestion and sleep. Teddy Roosevelt, John Muir and Thomas Eakins all suffered from what was then known as neurasthenia.

At that time, the recommended treatment for women was bed rest; men were advised to head to the Wild West. But neither treatment could be counted on to cure the disease.

Toward the end of the 20th century, doctors came up with the term chronic fatigue syndrome (or, in Europe, myalgic encephalomyelitis) to describe the set of symptoms that used to be called neurasthenia. But we still did not fully understand the illness, nor had we isolated its cause.

Patients have suffered because of this failure to fully understand the disease. Sometimes, doctors attributed the symptoms to anxiety, depression or hypochondria. Employers have been less than sympathetic.

Today, most health professionals have finally acknowledged that chronic fatigue syndrome is a real and serious illness. But its name, which focuses on just one of the disorder's many symptoms, has served to trivialize the condition, making it seem more psychological than physical and reducing interest in the disease among mainstream medical and scientific researchers.

This low interest among researchers is unfortunate because most of the biggest unsolved problems with chronic fatigue syndrome are scientific ones. We need to learn what causes the illness and we need to use that information to develop tests to diagnose, prevent and treat it.

The current consensus is that chronic fatigue syndrome is probably caused by a disturbance to the immune system. In ways that are not entirely clear, this disturbance upsets the immune system for a prolonged period of time and leads the body to become hyper-responsive and produce a large outpouring of toxic substances, which then cause the fatigue, muscle aches, headaches and mental confusion associated with the disease.

Scientists have speculated that the chain of events that leads to this prolonged immune disorder begins when someone is exposed to a triggering agent ? a toxic chemical, for instance, or a bacterial or viral infection. But identifying such an agent has proved difficult.

One complication has been that by the time someone develops symptoms and seeks treatment, the underlying infection is no longer detectable, so there is no longer a way to identify the causative agent from blood tests.

To complicate things even more, the over-responsive immune systems of people with chronic fatigue syndrome can activate co-infections, including Epstein-Barr virus, CMV and HHV-6, which make it even more difficult to identify the initial trigger.

Some doctors are beginning to believe that there may not be one single cause of this syndrome but a number of causes that all produce the same disturbance in the immune system. But what those agents are and how they cause the disturbance are challenging questions.

In the last few decades a number of viruses and bacteria have been fingered as possible culprits for causing chronic fatigue syndrome, but none ultimately stood the test of scientific scrutiny. The most dramatic example came two years ago when a group of researchers reported finding a mouse-related virus called XMRV, a pathogen in the same family as HIV, which causes AIDS. They believed they had identified this virus in the blood of a several patients with chronic fatigue syndrome, raising the hopes of patients everywhere.

Unfortunately, before this claim had been fully validated, many patients embraced XMRV as the long-sought cause of this illness and began considering potential treatments. Because of the similarities between the mouse virus and HIV, some of them even started taking AIDS drugs.

Then, we found out the truth.

In more than 10 follow-up studies, research in our UC San Francisco laboratories and elsewhere failed to find any evidence of XMRV in the blood of the chronic fatigue patients tested. Moreover, experiments indicated that this virus does not survive well in human blood, making it an unlikely source for a human infection. Other studies have suggested that the XMRV detected in the original studies may have come from contaminated lab materials.

So where does this leave the millions of people in the United States who suffer from chronic fatigue syndrome? Frustrated.

The medical community, and the agencies and foundations that fund medical research, have never given this illness the attention it deserves. That needs to change.

Some have suggested that a name change might help. Chronic fatigue immune dysfunction syndrome would be a more accurate name that would call attention to the fact that the disease is tied to a disturbed immune system.

Next, we need to retrench, to reconsider the direction of research on this disease. We should embrace the fact that we still do not understand what causes it and that until we do, we will always be restricted in our ability to develop new ways of diagnosing, treating and preventing it. This will continue to be frustrating to patients and their families, but embracing science that is later disproved hasn't served sufferers well.

Until we determine the causes and work out the best treatments for this debilitating condition, people with chronic fatigue syndrome will continue to suffer. In the meantime, we must increase support for basic research and for finding the best, evidence-based approaches for treating the disease.

Jay A. Levy is a professor of medicine and director of the UC San Francisco's Laboratory for Tumor and AIDS Virus Research. Daniel L. Peterson is a physician in private practice in Nevada and treats patients with chronic fatigue syndrome.
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ViestiKirjoittaja soijuv » Pe Loka 14, 2011 21:38

Borrelioosi/krooninen väsymysoireyhtymä

Useat kroonista väsymysoireyhtymää sairastavat ovat jossakin vaiheessa sairauttaan joko testien ja/tai oireiden/sairaushistorian perusteella huomanneet sairastavansa borrelioosia. On mahdollista, että useat väsymysoireyhtymää sairastavista ovat saaneet borreliatartunnnan tai jonkin muun bakteeri-/virustartunnan ? mahdollisesti useita taudinaiheuttajia.

Borrelioosista/kroonisesta väsymysoireyhtymästä kertova englanninkielinen artikkeli:
http://www.mesupport.bigstep.com/generic215.html

Krooninen väsymysoireyhtymä on suhteellisen tavallinen oireisto useiden muidenkin kroonisten sairauksien yhteydessä (MS, AIDS, lupus, diabetes jne). Kroonisen väsymysoireyhtymän oireista ym. on kerrottu esim. seuraavilla suomenkielisillä sivuilla:

http://fi.wikipedia.org/wiki/Krooninen_ ... htym%C3%A4 :

?Kroonisen väsymysoireyhtymään liittyvä uupumus on usein erittäin voimakasta, jopa invalidisoivaa. Uupumukseen liittyy aina muitakin oireita, joista yleisimpiä ovat esimerkiksi lihas- ja nivelsäryt, päänsärky, migreeni, pahoinvointi, masennus, ahdistus ja jatkuva kuumeilu. Sydänoireet kuten lisälyöntisyys ja rytmihäiriöt ovat yleisiä. Sydänfilmissä näkyy joskus muutoksia T-aalloissa.

Kognitiivisia ongelmia ("brainfog") esiintyy lähes kaikilla potilailla ja niiden vaikeusaste vaihtelee lievistä keskittymis- ja muistihäiriöistä jopa dementoitumiseen. Aivojen magneettikuvassa näkyy usein samanlaisia muutoksia kuin MS-tautia sairastavilla. Unihäiriöt ovat hyvin yleisiä. Osa potilaista nukkuu melkein vuorokauden ympäri, toiset taas kärsivät vaikeasta unettomuudesta. Yöuni on usein pinnallista ja potilaat voivat kärsiä myös painajaisista.

Immuunijärjestelmä toimii huonosti ja potilaat kärsivät usein jatkuvista virus- tai bakteeri-infektioista sekä uusista allergioista ja yliherkkyyksistä. Kaulan ja kainaloiden imusolmukkeet ovat usein turvoksissa ja aristavat. Myös perna saattaa olla laajentunut. Ongelmia on myös kehon lämpötilan ja verenpaineen säätelyssä. Suuri osa potilaista kärsii posturaalisesta hypotensiosta.

Muita mahdollisia oireita ovat esimerkiksi vatsavaivat, aamujäykkyys, valoherkkyys, lihasheikkous, hiustenlähtö, erilaiset ihottumat, huimaus, hiustenlähtö, näköhäiriöt, epileptiset kohtaukset, kuukautishäiriöt sekä virtsaamisvaikeudet. Kroonista väsymysoireyhtymää sairastavilla esiintyy myös tavallista useammin joitakin muita sairauksia, esimerkiksi fibromyalgiaa, ärtyvän suolen oireyhtymää ja endometrioosia.

???. Diagnoosia tehtäessä on tärkeää sulkea pois muut sairaudet, jotka voivat aiheuttaa samankaltaisia oireita, kuten narkolepsia, diabetes, MS-tauti, AIDS, borrelioosi, leukemia, lymfoomat, systeeminen lupus erythematosus ja kilpirauhasen vajaatoiminta.

????. Krooniseen väsymysoireyhtymään ei ole olemassa parannuskeinoa. Tehokkain tunnettu hoito on AIDS:in hoitoon kehitetty lääke Ampligen, jota on kokeiltu hyvin tuloksin 80-luvun lopulta asti. Lääke on kuitenkin erittäin kallis, eikä se siksi ole päätynyt yleiseen käyttöön. Myös antiviraaliset lääkkeet auttavat monia. Kofeiini ja muut piristeet eivät yleensä ole avuksi, mutta narkolepsialääke modafiniili saattaa helpottaa uupumuksen tunnetta. Oireenmukaiseen hoitoon käytetään esimerkiksi särkylääkkeitä, unilääkkeitä ja masennuslääkkeitä. Kortikosteroideja on kokeiltu vaihtelevin tuloksin.

Tiettyjen ruoka-aineiden vältteleminen voi olla eduksi, etenkin kun sairauteen liittyy usein allergioita ja yliherkkyyksiä. Väsymysoireyhtymää sairastavat sietävät yleensä hyvin huonosti alkoholia. Jotkut potilaat kokevat saavansa apua vitamiineista ja hivenaineista, etenkin magnesiumista. Kevyt liikunta ylläpitää peruskuntoa, mutta liian voimakas rasitus saattaa johtaa sairauden pahenemiseen. Osa potilaista on liian huonossa kunnossa kyetäkseen edes nousemaan sängystä.

Suomessa kroonista väsymysoireyhtymää hoidetaan ainakin HYKSin infektiosairauksien klinikalla Helsingissä. Hoitona käytetään kokeellisesti immunoglobuliinia, kortisonia ja antiviraaleja.?

Kroonisen väsymysoireyhtymän toteamiseksi on kehitetty Belgiassa verikoe:

Uusi testi kroonisen väsymysoireyhtymän syyn selvittämiseksi.

New test identifies mysterious disorder (CFS)

http://www.canada.com/reginaleaderpost/ ... 76&k=57586
Karen van Kampen
Regina Leader Post - Regina,Saskatchewan,Canada - April 13, 2006

?Krooninen fatiikki tunnistettiin ensimmäistä kertaa v. 1984 ja se on siitä lähtien aiheuttanut hämmennystä ja monenlaisia mielipiteitä lääkäreiden keskuudessa.

Kroonista fatiikkia ei ole kyetty osoittamaan aiemmin millään testillä. Sen vuoksi potilaiden oireita ei ole useinkaan pidetty todellisina. Niiden on väitetty johtuvan esim. nuhasta tai masennuksesta. Hoidoksi on suositeltu esim. lepoa ja ravinnon muuttamista paljon proteiineja sisältäväksi jne.

Nyt sairastuneille on tarjolla ensimmäistä kertaa testi, joka näyttää oireiden johtuvan elimistön häiriötilasta. Testin on kehittänyt brysseliläinen sisätautien erikoislääkäri Kenny De Meirleir.

Tietyt entsyymit suojaavat elimistöä viruksia vastaan. Kroonista fatiikkia sairastavilla kyseinen entsyymi on epänormaalin muotoista ? entsyymi on normaalia aktiivisempaa, mutta siitä huolimatta tehottomampaa kuin terve entsyymi.

Tähän saakka potilaiden on ollut mahdotonta osoittaa omaisilleen, työnantajille jne., että heidän oireensa johtuvat jostakin elimistön todellisesta häiriöstä. Psykiatri, psykoterapeutti Stein, joka on pitkään hoitanut kroonisesta fatiikista kärsiviä henkilöitä, on lähettänyt marraskuun jälkeen 15 henkilön näytteet tutkittaviksi laboratorioon. Stein on myös alkanut luennoida taudista sekä sairastuneille että hoitohenkilökunnalle. Uuden testin myötä sairastuneet voivat nyt ?osoittaa olevansa sairaita? ja esim. hakea sairauslomaa tai työkyvyttömyyseläkettä.

Stein tietää miten tärkeä uusi testi on sairastuneille, sillä hän sairastaa itsekin kroonista fatiikkia. Hänellä on epänormaalin voimakasta uupumusta, johon nukkuminen ei tunnu auttavan. Hänen sanottiin olevan masentunut, mutta hän tiesi, että jokin muu oli vialla hänen elimistössään.

Marjorie van de Sanden tarina: Ennen v. 1984 Marjorie oli aktiivinen peruskoulun voimistelunopettaja. 1984 hän oli auto-onnettomuudessa, 1987 hänellä todettiin syöpä, tämän jälkeen hän sai poskiontelotulehduksen joka kesti koko kesän. Syksyllä hän oli edelleen uuvuksissa. Tuntien jälkeen hän ei jaksanut usein kävellä edes opettajahuoneeseen. Silloin hän ymmärsi jonkin muunkin kuin kroonisen poskiontelotulehduksen olevan vialla hänen elimistössään. Marjorien ei tarvitse mennä testiin tietääkseen elämänsä muuttuneen. Vuosien aikana yksinkertaisimmatkin tehtävät, kuten ostoksilla käyminen, ovat olleet vaikeita. Hän ei toisinaan jaksa kantaa esim. ostoksia autosta kotiin saman päivän aikana.

Testin suorittaminen: verikoe joka lähetetään RED Lab ? laboratorioon. Testi tuli Pohjois-Amerikan markkinoille viime syksynä. Yhdysvalloissa testi maksaa 570$. Vakuutusyhtiöt korvaavat testin USA:ssa, mutta eivät Kanadassa.

Muita aiheesta kertovia artikkeleita:

Company aims for easier diagnosis, treatments ; CFIDS Chronicle, Vol. 11, No. 3 May/June 1998.

?Uusi tutkimuslaboratorio on aloittanut toimintansa Belgiassa, Brysselissä 1998. R.E.D laboratorio tutkii RNaseL entsyymin toimintahäiriöitä. Kroonista fatiikkia sairastavilta on tavattu kyseisen entsyymin toimintahäiriöitä. Testi mahdollistaa diagnoosin tekemisen ja auttaa tulevien hoitojen kehittämisessä. ?. Krooninen fatiikki muistuttaa syöpää; useita syitä, useita ilmenemismuotoja ja geneettisiä tekijöitä, joten useita hoitomuotoja tarvitaan. Hoidoksi on kokeiltu mm. Ampligen ? nimistä lääkettä.?

Koko artikkeli löytyy mm. sivulta: http://www.fibromyalgiasupport.com/libr ... m/ID/3299/

?R.E.D. Laboratories is currently working out an agreement with Hemispherx Biopharma, the makers of Ampligen, to provide testing related to Hemispherx?s plans to increase the availability of Ampligen and to undertake a Phase III trial of the drug for treating CFIDS. Spokesmen for Hemispherx have said the company?s recent experience with Ampligen suggests it is most effective for those patients who test positive for the RNaseL defect. Herst said he is hopeful the REDD test will help to define how Ampligen works.

Herst said he sees CFIDS as similar to cancer ? multiple causes, clinical presentations and genetic factors mean multiple treatments will be necessary. However, he said, ?CFIDS research is where cancer research was 30 years ago.? There are a few tests for specific, suspected causes of CFIDS symptoms and a number of treatments that are either non-specific or undefined as to how or for whom they work.

In suggesting that REDD might be one form of CFIDS and that Ampligen may be a start toward treatment, Herst said for-profit companies may be in a position to take advantage of their ability to raise capital and advance research into CFIDS.?
soijuv
 
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ViestiKirjoittaja soijuv » Ma Tammi 16, 2012 14:15

(2012) "Kroonista Borrelioosia sairastaville on vuosikymmenten ajan kerrottu oireiden olevan kuviteltuja, liioiteltuja tms. Samoin on kerrottu kroonista väsymysoireyhtymää kärsiville. Nyt on löytynyt objektiivista näyttöä oireiden tueksi. Immunologi Steven Schutzer tutki sairastuneiden selkäydinnestenäytteitä ja havaitsi niissä toisistaan poikkeavia proteiineja. Borrelioosia sairastavien näytteet poikkesivat kroonista väsymysoireyhtymää sairastavien näytteistä ja kummankin ryhmän näytteet poikkesivat sen lisäksi terveen verrokkiryhmän näytteistä."

http://m.discovermagazine.com/2012/jan-feb/90
Top 100 Stories of 2011 #90: Chronic Lyme Patients Validated


A new study uncovered biomarkers for Lyme disease symptoms that persist even after treatment.
by Katie Palmer

From the January-February special issue; published online January 5, 2012

.
Patients with chronic fatigue syndrome and post-treatment Lyme disease syndrome (in which symptoms persist after antibiotic treatment) have spent decades fending off charges that their debilitating exhaustion and cognitive problems were simply imagined. But a study released last February provides tangible evidence that their conditions are real and distinct entities.

Immunologist Steven Schutzer of the University of Medicine and Dentistry of New Jersey examined samples of cerebrospinal fluid, the clear liquid 
that surrounds the brain and spinal cord, from patients with each syndrome.

In identifying the contents of that fluid, he documented different sets of proteins for each group of patients, potential biomarkers that distinguish between the two 
conditions and healthy controls. Schutzer revealed the marker proteins by removing common, unrelated proteins like albumin and immunoglobulin from the spinal fluid before his analysis. ?That lets the smaller proteins?the potential biomarkers?not get obscured,? he says. ?At least now we know we?re not just speculating about the differences between chronic fatigue syndrome and post-treatment Lyme.?
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Viestit: 3097
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