Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

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Viestit: 1820
Liittynyt: Ma Tammi 26, 2009 23:13


Viesti Kirjoittaja Bb » Ke Tammi 28, 2009 13:26


Perheen äiti sairastui borrelioosiin + bartonellaan. Borrelioosi diagnosoitiin vasta 12 vuotta pureman jälkeen!! Lapset syntyivät sairastumisen jälkeen. Myöhemmin kummallakin lapsella todettiin borrelioosi ja toisella lisäksi bartonella. Myös miehellä todettiin borrelioosi. Perhe otti suun kautta antibiootteja 1 1/2 vuotta ja kaikki voivat tällä hetkellä erittäin hyvin:

"I had lyme symptoms for about 12 years. After camping in Finger Lakes region of NY with fiance (now husband) I got a bite on my back but never could see a rash (had a crawling feeling in the skin several times a day for 6 months though. Docs said spider bite or eczema (right.)

I developed over the next months debilitating fatigue, neck pain, dizziness, tingling in extremities and lots of ear pain and hearing problems for the first 3 years or so after bite. Would nap in the restroom of work during lunch, just miserable back then. No doc ever considered lyme, most said it could be stress (it wasn't). Never tested me for lyme and I never considered it a possiblity either. So, out of despiration I began taking mega vitamins and increased exercise jsut to see if it would help. Luckily that took just enough edge off of the symptoms I could be productive but was still generally ill and could not stop rubbing my aching neck.

Then, I got married and was getting worse (just up and quit a job and slept for 3 months straight to see if that would help. It didn't. Was told "chronic fatigue". In 1996 had son and 20 months later had daughter. Suprisingly I felt pretty good during both pregnancies but always wondered what had been wrong with me for the previous 5 years...

After my second child was born everything came rushing back and got very bad. Doctors wrote it off as "you have two babies, of course you feel bad..."

I started getting muscle pains and slight neuro stuff after that. Everytime I would start exercise program I would fall ill for several weeks, feeling bad in the head.

Then 4 years ago, the neuro stuff began: forgetfullness, depression, anxiety, bumping into things a lot, dropping things, missing appointments, repeating conversations, etc. I never had any of this before, ever. I was an athlete and happy person generally.

My children were both sick (with lyme but we didnt know it then) and were a lot to handle so of course I was always dismissed by doctors with being a sleepless mom. (Kids most likely were born with lyme).

3 years ago, I began getting REALLY depressed, lost motivation to do ANYTHING, couldn't complete even the simplist tasks (everything seemed overwhelming), had terrible mood swings, lots and lots of head pressure and frequent infections (pneumonia once ever 10 months, many sinus infections I had never had 1 ever before, etc). Life was miserable.

2 years ago: bells palsy (2 times), excruciating joint pain that seemed like RA (lasted a month), body fatigue like I'd run a marathon just walking a block or going up stairs (legs would give out), shooting pains all over, nerve pain down leg, floaters in eyes, hearing almost gone (like hearing under water), couldnt do simple math, (bounced checks, etc), couldn't remember phone numbers, etc. Couldn't remember where I lived if I left the house, crying jags daily, couldn't find the kid's school a couple of times (3 blocks away) and severe head pressure and felt like I was run over by a truck in general. Had complete left side weakness that lasted for 15 minutes (head scan showed no signs of stroke in the ER) Got into several minor car accidents, one I had no shoes on (I couln't explain why I had no shoes on to officer...) I had suicidal thoughts too. Tried once - weak attempt. (yikes, never said this out loud before except to hubby). Got told "probably" MS but general doc was running a lyme test in the meanwhile. Was positive for lyme by ELISA and WB.

I also believed I might have bartonella so I was also treated for this about 6 months into treating lyme and it made me feel so much better. But was negative on two bart tests.

6 months later, daughter and son tested positive on WB, too. Then husband did too. Daughter also tested by PCR positive for bartonella.

Bottom line, we are all feeling GREAT today. EVERY ONE of my symptoms is gone and has been gone for 3 months, most have been gone for at least 8 months (just noticable monthly herxing until 3 months ago.

I never did IVs. Just 19 months of straight oral abx combos for lyme and barts. I actually "got my brain back" after about a year of abx. 4 months of treating bartonella took away the remaining fatigue.

Is it gone?? Will we relapse??? I wish I knew what would happen. But, in the meantime, I have my old life back and even my thyroid function is normal again. Hubby is running 5-6 miles a day, feeling great too.

I may be atypical, I may not be. Who knows. This disease is so different in so many people. Different strains, different co-infections, different immune systems, different genetic markers, etc...What I can say is I thank God often for my success and for my family's too. It helped that we had the money to do all that travelling and buying all those abx. Thankfully, we didn't have to take a break in treatment.

I hope for the same success for all of you, especially you, heiwalove, as I've noticed what a rough time of it you've had thus far.

Many times in that first year of treatment I felt like giving up. Still had suicidal thoughts (fleeting) in that first year into treatment. I wrote this out to help everyone see that here's one case where a person went from couch-ridden and house-bound to fully functional again in under two years.

Viestit: 1820
Liittynyt: Ma Tammi 26, 2009 23:13

Viesti Kirjoittaja Bb » Ke Tammi 28, 2009 13:29

Mitenkähän perhe olisi selvinnyt sairaudestaan eurooppalaisia hoitosuosituksia noudattaen (Eucalb), jossa krooninen borrelioosi kyllä tunnustetaan mutta hoitosuosituksena on 30 vrk IV antibioottia:

Treatment of Lyme borreliosis in Europe

Condition Drug Dose/day Route Duration
Erythema migrans
Amoxicillin 3x500 mg
or 2x1000 mg oral 10-21 days

2x500 mg 1 day
1x 500 mg 4 days
oral 5 days
Doxycycline 2x100 mg
or 1x200 mg oral 10-21 days
Penicillin V 3x1000 mg oral 10-21 days
Cefuroxime axetil 2x500 mg oral 10-21 days
Treatment for borrelia lymphocytoma similar, (azithromycin excluded), but sometimes extended to 21-30 days
Treatment for multiple erythema migrans (secondary, relapsing EM) as for acute neuroborreliosis (below)

Condition Drug Dose/day Route Duration
Neuro-borreliosis (acute)
Amoxycillin 3x500-1000 mg oral 14-30 days
Ceftriaxone 1x2000 mg i.v. 14-30 days
Cefotaxime 3x2000 mg i.v. 10-30 days
Penicillin G 3x3000 mg i.v. 10-30 days
Doxycycline 2x1-200 mg oral 10-30 days
Treatment for chronic neuroborreliosis similar, but i.v. only and for 30 days

Condition Drug Dose/day Route Duration
Amoxicillin 3x500-1000 mg oral 14-30 days
Doxycycline 2x100 mg oral 14-30 days
Ceftriaxone 1x2000 mg i.v. 14-21 days
Cefotaxime 3x2000 mg i.v. 14-21 days

Condition Drug Dose/day Route Duration
Amoxicillin 3x500-1000 mg oral 14-30 days
Doxycycline 2x100 mg oral 14-30 days
Ceftriaxone 1x2000 mg i.v. 14-30 days
Cefotaxime 3x2000 mg i.v. 14-30 days
Penicillin G 3x3000 mg i.v. 14-30 days

Condition Drug Dose/day Route Duration
Ceftriaxone 1x2000 mg i.v. 14 days
Cefotaxime 3x2000 mg i.v. 14 days
Penicillin G 3x3000 mg i.v. 14 days

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