LYME

Discussion in 'Fibromyalgia Main Forum' started by street129, Dec 2, 2009.

  1. street129

    street129 New Member

    just found out that i have lyme.....another one to my list of longggggg dieases. i havn't been to a infectious dieseas dr. i saw susan levine first when i got ill in 1995, i stop dealing with her in 1998, and was doing great, i was going to the gym, and was able to do things, but i wasnt taking anything after i was up and about, now i wish, i had continue to have taken something, i might have not develope all these other buggs....but it seems over the years i got more and more dieseses that i didnt have before, something at this point, have me not feeling good, since 2009. yakkkkkk..mostly its from ebv, hsv1, hhv6. cmv, lyme, mycobacterium

    these are what i have so far.............maybe more to come, i took blood work today to check for other viruses....god are you there.....help me if u can hear me.


    i made an appointment to see dr. enlander, i live in new york, so thats a plus. my appointment is for january.14, $650.00 damn.

    i was given antibiotics BY MY PCP to take for 1 month for the active lyme, i don't want to take them, am i wrong for not taken them, i need advise on what do with these antibiotic, till i see dr enlander......advise please....thanks.

    is lyme treatable, meaning can you get rid of lyme once you have it...

    anyone has the goods on enlander, anyone seeing him, and how is your teatment coming, are you seeing any good results.
    [This Message was Edited on 12/02/2009]
  2. victoria

    victoria New Member

    If you go to the Lyme board here, there is listed at the top a whole bunch of resources to read about it and the often common co-infections.

    http://www.prohealth.com/lyme/blog/boardDetail.cfm?id=4482

    http://www.prohealth.com/lyme/blog/boardDetail.cfm?id=5654


    1 month of abx often isn't long enough for active lyme... it can encapsulate into 'cysts' to hide from the abx, just as mycoplasma etc can. How long have you had it? The very general rule is that the longer you've had it, the harder it is to get rid of it, often never.

    My son was suffering from symptoms that were hard to put together for over 2 years before his situation became serious at 16 - even then his 'usual' blood test panel came out normal, even tho at 17 his heart rate was 45-48 bpm, lost weight, pain all over, etc. and hadn't been able to attend school for 2 years due to extreme fatigue and neurological problems (memory, anxiety, etc)

    Not surprisingly, his symptoms mirrored mine. Only recently did I find a test result of mine from 2001 showing I had antibodies, tho nobody mentioned it to me or did a followup, much less treatment. But I wasn't surprised, since I'd been the one to figure out what he had and ditched the local MDs, took him to the nearest LLMD and he was positive 2X within 6 months on the IGenex western blot even to the CDC's "tracking/surveillance" standards. Fromm clinical observation, it was realized he had babesia and bartonella.

    He did 3.5 years of oral abx... still having problems & disabled... what can I say.

    Most of these co-infections are not testable for, and there's no real answers as of yet. The politicalization of it hasn't helped research unfortunately.

    All of this is more of a clinical dx, as you likely know... test results are surprisingly unreliable, some of these tests for different microbes (bacterial even) are less than 50% reliable. Even the CDC says Lyme is a CLINICAL diagnosis/decision based on the pt's symptoms; blood tests are only to "help" dx, not rule out a diagnosis.

    good luck...

    all the best,
    Victoria



    [This Message was Edited on 12/02/2009]
    [This Message was Edited on 12/02/2009]
  3. Nanie46

    Nanie46 Moderator

    Hi,

    Sorry to hear you also have lyme....many people with CFS or FMS later found out that they have lyme.

    Please listen to Victoria. One month of antibiotics will not help lyme. You need longer treatment at high enough doses prescribed by a Lyme literate MD.(LLMD)

    Most Dr's know nothing about how to really treat lyme.

    You can go to lymenet.org and post on the "Seeking a Doctor" board to find a LLMD or contact your local lyme support group to find a LLMD, or contact the lyme disease association.

    Typically an infectious disease Dr will only treat short term and tell you that you are cured, despite continuing symptoms.....big mistake.

    lymenet.org also has a great "Medical Questions" board that is very active....go there and post questions.

    You should start reading info from the real lyme experts, ILADS.

    Many people with lyme also have other tick borne coinfections like babesia, bartonella and ehrlichia. You need a LLMD to evaluate you for all of this.

    Here are some site/papers to read....


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    http://www.ilads.org/lyme_disease/about_lyme.html


    http://www.lymedisease.org/lyme101/coinfections/coinfection.html


    http://www.harp.org/Twostandardsofcare.htm



    I will be away for several days, but others can help you here on the lyme board or on lymenet.org.

    Good luck.

  4. munch1958

    munch1958 Member

    There are some old posts here in the library from "Wld285". If you can find them. She went to Dr Enlander and got a diagnosis of Lyme. Possibly you can dig up her old posts. I think she moved on to another more Lyme literate doctor.

    Last time I talked to her was a while ago and all Dr E wanted to do was Abx for 6 weeks then redo the Western blot. Then do another cycle then repeat the testing. That didn't make much sense according to other doctor's protocols. Nanie probably already posted a link to the Lyme bible or Dr Joe Dr Burrascano's updated protocol.

    http://www.prohealth.com/lyme/blog/boardDetail.cfm?id=8897

    Please know that you are not alone. Many of us (something like 8 out of 10 or 9.3 out of 10) go on to find out it was Lyme all along. You'll quickly find confirmation of this by posting on Lymenet as mostly everyone there first had a diagnosis of CFS or FM BEFORE they eventually found a doctor with a functioning brain that isn't scared to diagnose Lyme disease. The testing is so convoluted and it's so much easier for doctors to diagnose "Fibro" because no one will try to take their license away.

    I've been treating my Lyme and co-infections for 3.5 years which is average. I'd been sick since around 1981 with thyroid problems, candida issues, food allergies, etc. and guess that I was originally infected at age 11 in 1969 after a trip to the Ozarks.

    I'm about 95% recovered now with just some lingering problems from being growth hormone deficient which led to six osteoporosis related spine fractures. It will take about 6 years for my bones to recover the calcium lost due to lack of HgH. All of my doctors agree that an untreated Lyme infection led to the shut down of my hypothalamus pituitary axis. My Lyme was untreated for about 37 years.
  5. herbqueen

    herbqueen New Member

    My message to all with a FMS/CFS is to test for Lyme and take some type of agressive course of action. Depending on the severity of your symptoms and tolerance for drugs you may want to try abx or herbal protocols such as Buhner's or Cowden or possibly Jernigan( I don't see alot of input from patients on jernigan's procotol but I agree with his theory of detox, detox, is as important as killing the bugs). I lived with an FMS diagnosis for 8 years and thought I was managing the illness well with lifstyle, diet, exercise and supplements until I was diagnosed with optic neuritis 3 years ago with optic nerve atrophy/damage in one of my eyes. Than the Neuro symptoms took off. (severe cognitive and brain fog like i'd never experienced before, muscle jerking, balance, twitching, etc etc. )I know this is the same illness since I early when I was sick I had some of the same muscle jerking, twitching going on and have had cognitive neuro issues all along/but thought it was just "fibro fog". My symptoms even in the early stages in hindsight were classic lyme: Headaches, stiff neck, muscle spasms and twitching, severe insomnia, eyes hurting/vision changes, some night sweats etc etc. My doctor went to immediate fms diagnosis and I never even considered Lyme until the optic neuritis hit. 3 years ago. Now I have permanent vision loss and worry about my good eye since both eyes hurt during flares. I test negative for MS, autoimmune etc. Given my family history -(I don't believe we all have Lyme)-there is autoimmune type problems that run in my family- but I don't think that is all of it. Probably a combination of genetic susceptibility and then being exposed to Lyme combined with stress, triggered it for me. I definitely herx when on abx (recently discovered that) -also herxed on colloidal silver-good confirmation of a bacterial infection. I'm now considering adding abx since I have tried zhang's chinese protocol and buhner's (but have not exhausted since I took it really slow and thought I was doing well until this fall). I do wonder if herbals can be as effective as abx but also needs years and years of treatment just like abx. There just doesn't seem to be alot of concrete data out there and it is maddening (at least that I can find). Munch1958-- can you share with us what your treatment protocol was since you are 95% recovered? Thank you!
  6. munch1958

    munch1958 Member

    My profile has a running commentary on my protocol. I've been keeping it updated since 2006. All of my meds and doses are listed there but I probably should update it as I just had some prolotherapy done on my lower back and hip.

    I'm at 95% as long as I keep nebulizing glutathione, doing the 1 ml of methylcobalamin or B12 shots daily, and taking antivirals, antifungals, and antibiotics. I am also on Hgh and Forteo shots daily. If I stop any of the above I can quickly slide down hill.

    That also happens when it's time to change Abx. At some point, I don't get the same bang for my buck so those have to change. I know what symptoms to look for when it's time to change so my doc and I nip it in the bud. So I have no more big relapses or flares.

    Right now I'm on 300 mg of Rifampin 2x a day, 100 mg of Doxy 1x, and 1 -2 grams of Claforan IM per day. I'm playing with Cipro for Bartonella or a BLO. It seems to be the one infection that just won't die. Possibly it could be the CPN or mycoplasma pneumonia.

    For AV, I'm on Famvir. Anti-fungal...probiotics, Nystatin and Diflucan plus the dreaded diet.

    For hormones, I'm on 25 mg DHEA, 25 mg hydrocortisone, .06 Nordiflex Norditropin, 150 mcg compounded T3 and 10,000 iu Vitamin D3. I have B-HRT pellets of estradiol and testosterone implanted in the fatty part of my hip because nothing I tried besides pellets would get my blood levels up to the target range.

    I've dropped T4 once again. All it does is raise my blood pressure and make me feel bloated plus I have a hard time controlling my weight. I just do much better on T3 only. I also tried some Fludrocortisone recently. That got rid of this thumping sensation in my head but it also contributed to weight gain and blood pressure that could not be controlled.

    This has got to be the world's most expensive disease to treat. Between the meds, hormones and supplements I spend about $500 a month and we have GREAT insurance coverage.