Do I hae Lyme is it remissionalble?

Discussion in 'Lyme Disease Archives' started by LISALOO, Jan 31, 2010.

  1. LISALOO

    LISALOO New Member

    I've been sick for six years, told it's CFS, deterioriting each year almost bedridden. Crushed by fatigue, post-external malaist.

    Igenix:

    IGM 39, 41, 83-93 +
    IGG 23-25, 31-34,39 83-93 IND
    58 ++

    I've tried antibiotics for a month at a time, herbals at a month at a time, no change in symptoms which makes me think that I don't have lyme.

    What do you think? And if this is lyme, is is curable at this length of time.

    I've read of people who've had treatment for years and no difference. SO did they really have lyme.
    I've been sick for six years, told it's CFS, deterioriting each year almost bedridden. Crushed by fatigue, post-external malaist.

    Igenix:

    IGM 39, 41, 83-93 +
    IGG 23-25, 31-34,39 83-93 IND
    58 ++

    I've tried antibiotics for a month at a time, herbals at a month at a time, no change in symptoms which makes me think that I don't have lyme.

    What do you think? And if this is lyme, is is curable at this length of time.

    I've read of people who've had treatment for years and no difference. SO did they really have lyme.

    I have seen LLMD's, however, I couldn't handle the antibiotics after several weeks due to yeast, Yes, I was on the diet, and the antifungals, prescription and natural,

    I tried Cowden for a month, but then the alcohol was too much for my Interstitial Cystitis

    It Bothers me that there are several people on other lyme boards who have stated that they'e treated for 1+ year and only had maybe 1 symptom get better. I don't want to do the "get worse before better" with no change.
  2. victoria

    victoria New Member

    Hi, haven't seen you around in a while?

    I don't think you ever get rid of it really, just keep it subdued/in remission, and likely have to every so often take whatever works for you to help keep it that way. That is, once you do achieve that.

    But I have read of so many different ways people have gotten to that goal, and in varying degrees, it's hard to give people advice. I know I can't take abx in high doses for instance like my son did (orally, was scared to do IV); what I've done alternatively has helped me.

    That said, if you do the abx route, you need to do way more than just one month's worth. And the abx should be alternated and changed depending on your response. The same would be true for almost any protocol regarding length of time, unless you'd just gotten it.

    For some of us, it is brought under control relatively quickly, maybe 3-6 months? But most of us take longer.

    You might want to check some of the links about info at other places in the top sticky that I started....

    You wrote, I don't want to do the "get worse before better" with no change.' - well, firstly you do have to herx, that's the only way you know whatever you're doing is actually working. As far as change/improvements, sometimes it happens pretty slowly.

    A lot of this comes down to one's genetic makeup/natural resistances, plus the varieties & kinds of different 'bugs' we have. It's rarely 'just' lyme, ticks are dirty critters and pass the bugs on to their babies even.

    Sorry I can't write something more uplifting/positive... but it sounds like you haven't likely stuck long enough to any one treatment, from what you wrote, in order to see improvement. I really hope you have, or find, a good LLMD who can guide you...

    all the best,
    Victoria

  3. LISALOO

    LISALOO New Member

    if i have lyme, shouldn't i have herxed at least when I attempted treatment. Yes, I gave up, but due to candida or interstitial issues
  4. victoria

    victoria New Member

    people respond differently to different types of abx, depending on what they have; plus there are some different types of Bb and different types of abx work best on them. Also depends on how you were taking the abx, and what the dosages were. The 'usual' amount recommended by the IDSA is not enough to provoke a herx at least in most people.

    I noticed my son got different responses to different abx he was taking - with some he had a harder time. He definitely had Lyme, but from his response to different abx and symptoms, bartonella was determined to be extremely likely; also had head sweats after starting treatment for those, which indicates babesia.... it was sort of like peeling an onion.

    So, the added difficulty is that you may NOT have Lyme, but one or more of the other pathogens that act in similar ways (mycoplasma, bartonella, CPn, etc)... which is why you need a good diagnostician since the lab tests are pretty unreliable overall especially for these other things.

    But if you can't take the abx, you might want to look into one of the alternative treatments, like buhner's or others. There seems to be a yahoo group for just about any of the alternatives, you might want to do a search there for groups that are doing different protocols for Lyme. I think I listed some in that sticky above.

    It's hard to figure out, I know... but CPn, mycoplasma and bartonella seems to be 'biggies' as to causing many of the same symptoms as Lyme. Again, that's why it's good to start out with a good clinician/diagnostician... you might try lyme net flash for referrals ifyou don't have an LLMD...

    all the best,
    Victoria

  5. herbqueen

    herbqueen New Member

    You need to give any protocol at least 6 mos to a year....

    Perhaps try Buhner's protocol ? (no alcohol tinctures). I would also add artemesia products --overlap now with CFS and Lyme /Babesia treatments.... See cheney's protocol now who is using wormwood/artemisin (spelling?)........

    Also- look at misty meadows formulations out of NH-google to find her presentation. No easy answers I'm strugging to find a protocol/answers as well .... I have neuro crashed/intense flare on first an herbal protocol (could not tolerate many of buhner's herbs) and now pharmecuticals.

    After all else is exhausted .... maybe cheney's stem cell treatment/protocol?
  6. victoria

    victoria New Member

    how quickly did you get a herx with Buhner's protocol? Seems like if one is using the right stuff it happens pretty quickly...

    also I know for my son, he started herxing withing 36 hours of first starting a combination of abx; I started to herx within 24 hours of starting the abx/benicar on the marshall protocol. I have also tried MMS 'just to see', I will also get identical herxes with it within 24 hours...

  7. herbqueen

    herbqueen New Member

    I started getting more brain fog on cat's claw (was tincture)than added knotsweed.. worse yet.... over a month then added andrographis/sarparilla-- this was all on top of months 7-8 of Zhang protocol (Dr. Zhang said it was OK)--thumbs/fngers started twitcihng then maybe a week or 2 into andrograph-all hell broke loose-

    jerking/twitching/loss of balance/coordination/non functional brain fog/ problems speaking/swallowing ,gait off, leaks weak, loss of depth perception, shaky, head jerking forward, foot drug, numbnesss , insomnia (but not as bad before). Basically felt like I had a serious neuro disease/ MS. I stopped herbs on advice of Dr. Zhang and it took me 4 months to recover. And I did not recover back to baseline but had lasting neuro symptoms didn't have befor... some shakiness, left side weaker than before, worse brain fog.

    On advice of dr- went on LDN during first crash.... while waiting for MS testing (MRI was normal) Keep in mind I have optic neuritis -classic MS symptom or MS precursor. Before that it was fibro symptoms for previous 8 years. Was stable on LDN (after crash recovery) for one year. Also combined it with candida diet and amygdala retraining.

    Now fast forward to this fall- sleep started to get disrupted with more neuro symptoms. Went on Dr. McCandless fungal treatment-flagyl/diflucan-felt wired first few days.. maybe stronger/clearer-- non functional brain fog/total insomnia by day 7 of flagyl. Tongue turned white/yellow, Lost all taste, appetite, lost smell--stopped flagyl-took 5 days to regain appetite. Continued Diflucan for 2 more weeks... felt really ill. Stopped Diflucan continued to spiral downward for next 2 months with all of original crash MS neuro disease scary symptoms re-emerging plus alot more (lasting numbness, neck jerking all the time, total insomnia, difficulty swallow, worse speech problems, extreme head pressure, worse vision/eye pain both eyes, total shakiness, dizzy feeling to the point of naseau never had that before). Neck tired of holding head up...basically a mess! I don't see how it could be herxing still when I stopped drugs and continued to spiral downward and still there 2 months later?

    Sorry for all moaning.....just difilult and terrifying, when treatments make me so much worse with lasting symptoms.......I feel like it causes a flare maybe then a herx? Increased auto immune response perhaps?

    I now long for the days of fibro/muscle pain only............life was so simple then.


  8. victoria

    victoria New Member

    So sorry you've been thru all of that. Neither my son or I got anything 'new', just flares of what we already had, and that is bad enough...

    You know, this is so dang complicated... I have to wonder if they'll ever figure it out. I know there are so many different pathogens interacting in each of us, I do think it's why some of us have so much more difficulty.

  9. LISALOO

    LISALOO New Member

    Thanks for your suggestions but within two days the cat's claw recommended by buhner distroyed my IC that was in remission. i spent forver after that in the bathroom. not ic friendly!

    I did artemisia for several months, no change.

    Through 6 years of doctors, I should mention that I've been through about $15K of tests, every bacterial,viral, nada.[This Message was Edited on 02/01/2010]
  10. LISALOO

    LISALOO New Member

    it also freaks me out how many people where diangosed withCFS or FM, undergo Lyme and years later are no or very little better. Do they have lyme, or was it just the cylindrical ups and downs of CFS or Fibro,

    I don't want to keep declining and suffering
  11. victoria

    victoria New Member

    that if you find something that helps you, that you need to do it every so often to keep it in submission/remission. Not totally good news, but if that's what it takes, it's not too bad as long as it keeps working.

    I guess that's the problems in a nutshell tho-
    finding something that works, and then keeping it in remission.