New to Board, Success Stories for Chronic Lyme?

Discussion in 'Lyme Disease Archives' started by bree~leigh, Mar 20, 2007.

  1. bree~leigh

    bree~leigh New Member

    Hi all,
    New to Lyme Board as of today. I have CFIDS/FM/Chronic Lyme.

    For those of you with chronic lyme, what has been the most effective treatments for you?

    I was on tetracycline for 8 months, felt better...but the yeast overgrowth increased by IBS so had to go off to do yeast detox.

    Now will go back on lyme Tx, but wondered about your success stories? Anybody have IV treatments or other successful treatments?

    Thanks for any input.
  2. bettydroop

    bettydroop New Member

    Hello and good to hear that you have gotten better with Lyme.

    I was just wondering about this so I will continue to check because I would LOVE to see great stories!

    Maybe you can share your experiences here since you have had luck with a protocol. I think you could be an inspiration - I think more people are having a tough time with things and good use some positive hope. I know I would- lol.

    I am still waiting for my lyme results, but my DX is Fibromyalgia and CFS.

    Best of luck -

    Bettydroop.

  3. bree~leigh

    bree~leigh New Member

    Thank You Betty for welcoming me.
    You asked me about my lyme ptotocol.

    After clearing up of yeast overgrowth, doc just put me on monicycline (cousin of tetracycline/doxycycline)which I was taking before with success. Plan is for long term treatment until symtoms are stably better- usually 1 yr or longer but varies from person to person. To control the yeast during treatment, nystatin daily and diflucan 1x per week and low sugar diet.

    From what I have read there is much overlap between FM/CFIDs and Lyme so my doc has taken a multi modal treatment approach addressing all areas which has helped. I know for a fact the ABX help bc when I went on a vacation to clear the yeast, Symptoms exacerbated. I just feel better when on ABX....for now at least.

    Hope this helps.

    There are more specific lyme sources out there for your education.

    Google ILADA for general info, diagnostic and treatment protocols for lyme.
  4. mollystwin

    mollystwin New Member

    Welcome to the board!

    I don;t have a success story for you yet, but wanted to post.

    I was also diagnosed with CFIDS/Fibro before I got the lyme diagnosis. My new doctor who is treating my lyme says because I have my lyme diagnosis, I don't have CFS or fibro. Those illnesses are diagnosed only when there aren't any other specific illnesses to explain the symptoms. Like a black box. If they can't figure out what it is, they call it CFS or Fibro. By definition those illnesses are diagnosed when all others are ruled out, so when you do get a diagnosis of something else, then by definition, you dont' have CFS or Fibro.

    I hope he is correct about this. Because Lyme can be treated and eliminated, but the others can't!!!

    I'm in week 4 of treatment. I was on doxy, but just switched to zithtromax because i'm going to Florida. My twin sis was diagnosed last year and is doing better, but still working on it.

    Good luck in your treatment. I hope you can keep that yeast under control!!
  5. bree~leigh

    bree~leigh New Member

    Thanks Molly for your input

    There are so many overlapping Sx between the three diagnosis. My first markers of CFIDS was active EBV and CMV with all the hormonal deficiencies that go along with CFIDS.

    My protocol is one for all three conditions and it is when all three are treated I feel my best. If I go off my antivirals, for instance, my viral Sx exacerbate..when I am off ABX, my bacterial Sx exacerbate.

    So for some of us treating the Lyme will clear all Sx, for the rest of us with markers of all three illnesses, we may need protocols for all three to achieve our personal best.

    If the diagnosis is just lyme without the other markers of CFIDS, then lyme protocol may be sufficient to help all the other symptoms. Most doctors are coming along to see that for many of us, these Dx exist concurrently instead of one over the other.

    Hope this helps.

  6. mollystwin

    mollystwin New Member

    I also have virus and hormonal deficiencies etc. I am treating them all including adrenal fatigue with my current doctor. My doctor thinks that the lyme weakens the immune system and we are working on that too.

    He feels that once the immune system, hormonal, thyroid and adrenals are addressed as well as the lyme bacteria and virus, then I will be well. I hope he is right. But if the lyme goes unchecked, the rest will never get better.

    Everything except the virus load fall under lyme symptoms. So I think he could be correct in his thinking.
  7. bree~leigh

    bree~leigh New Member

    Yes, Molly your doctor has excellent points. It's hard to tell what primary problems is when the immune system goes wonky.
    All I know is that when my doctor treats me with all three protocols, this is when I feel my best. All three of my specialists whom I have seen look at all 3 illnesses as overlapping instead of one more important or more significant than the other, especially since they are all in the chronic stage.

    Docs will vary on this, The important thing is that all your underlying infections/hormone imbalances/immune dysfunction and all the other aspects of the ilnesses are being addressed and that you see improvement. If your doc is addressing all these areas, you have a good doc regardless of his belief that lyme rules out CFIDS/FM.

    I am in the camp with the doctors that think that CFIDS/FM and Lyme can coexist. This has been my experience.