Needing answers, please.....

Discussion in 'Lyme Disease Archives' started by jole, Dec 22, 2008.

  1. jole

    jole Member

    I have been diagnosed with FM....have been sick since childhood. However, nothing has helped....11 different docs, just as many meds, etc. I recently started a treatment of IV's including hydrogen peroxide, DMSO, and strong doses of Vit D.

    These made me very ill...severe migraines, more pain than bearable, etc. and the doc thinks because of the severity of the reaction I probably have Lyme instead of FM.

    What I want to know is, what are the differences in symptoms? I have no joint pain other than ankles and fingers...all other pain is in my deep muscles.

    Does Lyme have the cognitive problems? Mine are pretty bad most days. And I either don't sleep at all, or sleep 18/24 hours per day...goes in cycles. Yes, I have been treated by phychologists, etc. but can honestly say the meds don't seem to help at all. What else? I guess you name it, I have it....lots of sensitivities to meds, etc. also.

    Does this sound like it could be Lyme, or strictly FM to you guys? Thanks for your replies***Jole***
  2. Daisys

    Daisys Member

    I didn't have joint pain until after my treatment for lyme disease began. I had classic FM, with all the tender points, and tight fascia, which means the muscles are always clenched, and therefore very sore. I wasn't even aware of how bad my cognitive problems were until I got better. I was always in a fog.

    I also had insomnia, but didn't know it, because I slept long hours--I just didn't get any deep wave sleep. This is key, because if a healthy person is deprived of deep wave sleep, but otherwise doesn't wake up, they develop all the above symptoms while thinking they were sleeping well.

    I never dreamed I had lyme disease until I ended up in a lyme literate MD's office, and he recognised it in me immediately.

    I highly recommend you locate a LLMD. They can rule out lyme, and find out what is the trouble, if it isn't. Lyme disease is a clinical diagnosis, taking history and symptoms. Test results are for supporting the diagnosis and progress, especially because none of them are very reliable. There's been very little money for research for lyme disease, so most doctors know very little about it.

    The best way I know of right now to find a LLMD, is to go to lymenet flash medical questions. List your symptoms and where you live, and someone will private message the nearest doctors to you. Be aware that most are not preferred providers with insurance companies. They need more time than insurance companies allow per patient, and use supplements and protocols that insurance companies don't pay for anyway.

    I know lyme literate doctors are expensive, but they are motivated to heal--if they belong to ILADS, the LLMD society, either they, or someone they love, has lyme disease. I'm really sure that if I hadn't found an LLMD, I'd be dead or have developed a named disease by now. The first year was REALLY rough on me, but now I'm better than I have been for years, and improving all the time.
  3. Nanie46

    Nanie46 Moderator

    Hi,

    I suggest you read Dr Burrascano's paper titled "Advanced Topics in lyme disease-Diagnostic Hints and treatment guidelines for lyme and other tick-borne illnesses" Sept 2005. Lots of great info and a symptom list. It can be found at:

    www.ilads.org/files/burrascano_0905.pdf


    I also suggest you read the ILADS guidelines at :

    www.ilads.org/files/ILADS_Guidelines.pdf

    There is lots of good information out there, but these have some of the best info.
  4. victoria

    victoria New Member

    I agree with the above, it's a very hard disease to diagnose. My son has been diagnosed since 05 and still has cognitive problems, had it well before his dx as well. The physical symptoms have respondd better to treatment, but it seems the neuro problems are the hardest at least for him. I'm not sure if it has to do with the order in which symptoms appeared or not... but I know for him it started neurologically first.

    There's a thread I started that is stuck to the top about different sites regarding lyme and other infections transmitted by ticks, you might want to start reading a little bit at a time or print it out so it will be easier to read.

    good luck, this is a tough thing to beat into submission/remission.

    all the best,
    Victoria

  5. victoria

    victoria New Member

    the physical pain can be anywhere, can migrate, be in joints and/or muscles, etc. It shows up wherever and however it wants to unfortunately, which is why it makes it so difficult to diagnose except thru testing (IF you're lucky to show up positive) but also thru a trial treatment. Even the CDC says it is a clinical diagnosis, not based on blood test results.

    Hope that helps.

    all the best,
    Victoria
  6. jole

    jole Member

    I appreciate all the information....and will be reading from the sites you mentioned. I'm still not sure if it's Lyme or FM, but I seem to be getting no better if it's FM, and am at a loss for what to try next.

    The doc who feels it might be Lyme is only in this area once a week, so is kinda hard to get in to see. But I'll start reading. Thanks again!***Jole***
  7. munch1958

    munch1958 Member

    I thought I had it for 28 years. I'm now almost fully recovered. No more fatigue, joint or muscle pain, no more TMJ, no more costochondritis (chest pain), no more neck problems or stiffness. The details of what I did are in my profile here. I keep a running record of the last 2.75 years here.