Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

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


Viesti Kirjoittaja soijuv » Su Syys 06, 2009 21:32

Julie sairastui 1994 "nuhankaltaisiin oireisiin". Dg: poskiontelotulehdus. Myöhemmin diagnooseiksi annettiin Epstein Barr -virus (vaikka testiä ei tehty) ja mononukleoosi. 9 vuoden kuluttua oireet voimistuivat. Hänellä oli voimakasta huimausta, pahoinvointia, oksentelua, niskakipuja, migreeniä, paniikkikohtauksia, oikea silmä turposi, krooninen poskiontelotulehdus, selkä/nivelkipuja, lihasspasmeja jne. Borrelia Western blot ja PCR negatiiviset, MRI:ssä muutoksia aivoissa. Neurologi epäili MS-tautia. Siinä vaiheessa Julie meni borrelioosiin erikoistuneen lääkärin vastaanotolle (LLMD). Verikokeet lähetettiin Igenexin laboratorioon ja ne osoittivat hänen sairastavan borrelioosia.

Hoito: Rifampin 600 mg Flagyl 375 mg. Hän sai hoidosta voimakkaat reaktiot. Hänen lääkärinsä yhdisti koululääketiedettä ja vaihtoehtolääketiedettä. Julie käytti antibioottien lisäksi homeopatiaa, oreganoöljyä, vitamiineja, myrkkyjenpoistolaastareita päivittäin vuoden ajan jne. 6 kk:n jälkeen hoitoon lisättiin kissankynsi ja Rifampinin määrää vähennettiin puolella. Kuukautta myöhemmin Flagyliä otettiin vain viikonloppuisin. Vähitellen Rifampinia vähennettiin 1 tabletilla 2 viikon välein.

Tällä hetkellä edellämainitusta hoidosta on kulunut 2 1/2 v. ja Julien vointi on koko ajan tullut paremmaksi. Hänellä on vielä jonkin verran tinnitusta ja hartiakipuja. Hän käyttää edelleen kissankynsivalmistetta, maitohappobakteereita ja useita lisäravinteita kuten magnesiumia suurina annoksina.

Late in 1994, I came down with a flu like illness. My body hurt so bad, bone pain, fevers, chronic runs and dizziness. I was put on antibiotics briefly for a 'sinus infection', and after that, my stomach got worse.

I started the doctor shuffle, and was finally labeled with 'Epstein Barr'. I was told I had mono and it would take me at least 6 months to recover. It took about 2 years. I bought a water bed to get some relief. I was never the same again.

(I've since found the tests that the specialist ran - they never ran an EBV test. It was a label they used because they had no other answers).

Whenever I faced stress, my glands would swell. My knees cracked like a bowl of Rice Krispies.

Fast forward 9 YEARS to June 2003. I was under a lot of stress at work. Then I found the tiniest tick I ever saw in my bed. I then noticed I started getting dizzy at night, and the bottom of my feet got ultra sensitive.

By July 4th, I was so dizzy I was vomiting if I moved off the couch. I went to a quack who said sinus infection and put me on Levaquin and Allegra D for 2 weeks. During which time a brown circle broke out on my right shoulder. I started to feel better after 10 days, but ran out of abx. I went back for more and they gave me another week. The second I stopped Levaquin, wham with the dizzies. Only now, the neck pain started. And my stomach was a disaster... And around 7 pm each night, I got hit with panic attacks and migraines. If I went into a large space, like the foodstore, I was doomed. My right eye was swollen like someone punched me.

I went to my PCP (non Lyme literate) and demanded a Lyme test. They did a PCR and it came out negative...

The summer went by and I started researching and found Lymenet. And demanded a Western Blot and test for coinfections. All 'negative.

By September, I thought my life was over. Went to ER, who sent me to Neuro, ENT, Pain Mgt. At this point, the floaters were so bad I couldn't go out in the daylight, nor could I manage to get off the couch many days. I spent most days with an ice pack on my neck and right arm. The swelling in my right eye spread to my whole face.

The CAT scan and bloodwork indicated infection and they put my on Levaquin and said get to ENT and Neuro.

The Neuro (god bless him) put me on low doses of Valium (2mg) to help with the dizziness which by now was unbearable.

The ENT kept me on Levaquin for 'chronic sinusitus' (and of course I herxed my brains out). My sinuses slowly responded, but I started to develop sciatic pain and tendon pain - bc of course they don't tell you quinolones cause tendon damage. But the neck pain and floaters were unreal. In December, I had a cervical epidural to help deal with the neck pain.

I was finally taken off Levaquin around Christmas.. And had another sinus infection in 6 days. And was put on Augmentin. And thought I would DIE!!!

Again, I demanded another Lyme test from my PCP, this time by IgeneX. He said let's send you to another neuro.... who at first glance said I sounded like I had Lyme, and changed her mind once she saw past test work. An MRI revealed lesions of unknown origin... And of course she wanted to do a spinal to 'rule out' MS.

And that's when I ran to the nearest LLMD. I knew it all along, but I guess I didn't want to face it, or was too braindead to get it at the time.

I was put on 600mg Rifampin and 375mg flagyl. From day one. Clinically dxd on the spot with Lyme and Bartonella. My Stryker panel showed almost NO CD57 Natural Killer Cells. My IgeneX WB was CDC positive, although the PCR from MDL drawn the same day was negative. And so were coinfection tests.

I herxed my brains out and went through all the fun stuff we all go through. My muscles were in such bad shape, I had lumps from muscle spazms all over the back of my head and my shoulders. Weekly Trigger point injections of lidocaine finally took care of the situation. Who'd think you'd be happy about getting shots in the HEAD??? I was.

I went through all the scary stuff. Heart herxes, dizzies, pass out tired, blood sugar problems, UTI's from yeast... all of it..

My LLMD combines traditional treatment with homeopathy. She put me on an exhaustive vitamin regimen (www.bodywise.com, oil of oregano(from www.youngliving.com), and I used the foot detox patches every night for a year (www.real-world-health.com).

Instead of just stopping abx like some here do, my transition was sooooo slow I don't think my body had time to realize. After 6 mos of successful treatment, continual improvement, she added in Cat's Claw (Prima una de Gato from Allergy Research). I herxed off 1/3rd capsule in about 30 minutes. And cut my Rifampin dose in half. And a month later, cut the Flagyl dose to weekends (although I think I pushed it to 4 days a week, and then cut back to weekends).

And then started cutting Rifampin dose by 1 pill, every 2 weeks. And when I got down to 1 pill a week, cut flagyl to 1 day a week. And on November 10, I took my last pill.

I was a bit scared to stop, and my body was still quite messed up. I still was herxing, albeit slightly, every month.

Last December my LLMD told me the benefits of using a mini-trampoline (in terms of keeping body loose and detoxing) - I bought one and never looked back. My blood sugar is now normal and I no longer get loopy after eating. And I seem to no longer herx.

If you've actually read this far, hallelujah!! Many here helped me and held my hand when I needed it. And I have you all to thank.

Julie G.
_ _ ___ _ _

No relapses, only improvements and a return to being a normal person and feeling 'normal'.

A few lingering symptoms - mainly tinnitus, and I still take Flexeril at bedtime. Despite daily rebounding, massage therapy, my shoulders still are a bit tight. LLMD thinks they are related.

I continue to take Cat's Claw and acidophillus, and will do so for the forseeable future. I am also on a very exhaustive supplement regime (including of course, Magnesium), that I am committed to taking for the rest of my life.

I am currently also giving myself weekly IM Magnesium injections. My levels have returned to the low end of normal, so hopefully I won't have to do those forever.

I try to exercise 4-5 days a week on trampoline and treadmill, and although my diet isn't completely 'no yeast', I do watch my carbs and avoid pure sugar like the plague. But as you feel better, sticking to it gets kind of tough (and if I go off the wagon, my friend Candida returns). But sugar no longer makes me dizzy or feel drunk, so I must be winning the war.

From where I was 2 1/2 years ago, (and even 1 year ago when I was deemed 'ready'), it's a situation I can live with. And with time, I hope it resolves like everything else has.

I've come a really long way even in the last year since I've been off.

I was fortunate to be able to work throughout my entire illness in an extremely stressful job. I work about 45-50 hours a week, and commute an hour each way.

Early on there were many days I couldn't make it to work, but this experience has shown me how wonderful my employers are. I couldn't have asked for more supportive bosses.

Just wanted to share my good news, because yes, people do get better. I'm still around, because without this board I would still be trying to figure out what was wrong with me (or in a wheelchair, or in a psych ward, because after all, it's all just in our head and stress related).

Julie G.
_ _ ___ _ _

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