IS IT LYME OR IS IT FIBRO ...or is it both???

Discussion in 'Lyme Disease Archives' started by Butterfly_of_grace, Mar 30, 2007.

  1. Butterfly_of_grace

    Butterfly_of_grace New Member

    Im really confused about something...

    I got tested about 6 yrs ago and my one and only test was negative.

    I was at my job the other day adn we had a new patient there (I am a Physical Therapist Aide). She was in for severe Lymes Disease. As she was talkign to me (shes a chatter box too LOL) we were discussing symptoms of things and she was dx with CFS, bipolar disorder and such over the years onyl to find out it was Lymes disease all along and all her tests were false negatives. Now she has a few lesions in her brian (which I wasnt aware that Lymes caused that but ok) and she has been trying desperately to convince me to get checked by the right Doctor right away because all my symtoms (which are fibro symptoms and CFS symptoms) are all Lymes symptoms.

    How do you know if you have been tested correctly? Should I get an updated test since my symptoms have gotten wors eover the years or is this just plain old fibro? Who do I go to? most importantly WHO THE HECK DO I TRUST???
    I have lost faith and trust in my doctors so I woudlnt know where to begin.

    DO I listen to this patient? She beleives God put her in my life for a reason (which I believe sometimes that can happen)....but do I just blow it off to protect myself from a little hope that may end up being just plain old false hope?

    I dont know what to do .

    She gave ma an entire list of 38 symptoms of LYMES I had EVER SINGLE ONE OF THEM except for one which had to do with unexplained lactation. ALl the other ones I have.

    She scared me to death but I dont wanna keep running to the Doc on a whim.

  2. victoria

    victoria New Member

    Well you ARE in NJ which is certainly a high risk state. And you are right that the symptoms have a huge overlap!

    You may have only had a preliminary test run, which is less reliable than the more expensive Igenex Lab's Western Blot... and the latter is only about 70% reliable. Add to that fact that many people with long-term 'chronic' Lyme do not show up positive on a blood test until after being treated for a while... makes diagnosis even more difficult!

    The reason is because Lyme bacteria is a spirochete (like syphilis is) which means it can go intracelluraly, ie, go right inside your blood and tissue cells -- even your white blood cells! - and cross the blood-brain barrier and take up residence in your brain and other organs, wherever you're genetically susceptible.

    Syphilis was called the 'great masquerader' because over 100 thought-to-be distinct diseases were cleared up when it was discovered, and additionally about 2/3 of the schizophrenia wards were cleared once pts were treated for syphilis experimentally. The genome of Lyme spirochete has been figured out, and is 2X genetically complicated than Syphilis.

    So doctors are supposed to go by your clinical picture even if your blood test doesn't show positive or you haven't had a rash (less than 50% have). A high number of people previously dx'd with CF/FM AND other 'autoimmune' diseases have found they had Lyme and/or other stealth pathogens like mycoplasma.

    You are in the NE so you are actually in a better position to find a good doctor (LLMD=Lyme Literate MD).

    My son as a young teen had all my symptoms of CFIDS and then got all the pain of fibro... but he had Lyme and most likely bartonella and babesia which are commonly transmitted along with Lyme. We never saw a rash on him, and we live in Georgia where it's not supposed to be (as if!). He is finally starting to show some real improvement after almost 2 years of oral abx and hyperbaric oxygen... he is 19 now.

    You need to educate yourself about Lyme AND the other stealth pathogens... a good place to start is to read people's stories here, on this board and the CF/FM board, and the library here for CF/FM, and also ilads.org

    You might consider getting tested for all the stealth pathogens, most LLMDs will - my son was tested for everything altho nothing else showed positive...

    but of course, again, the tests for the other things are even less reliable.

    Hope this helps,
    Victoria

  3. jarjar

    jarjar New Member

    Victoria gave some great advice. The majority of cfs/fm is just an undiagnosed case of lyme. What she told you is the truth. Take the Igenex western blot as it is the most sophisticated.
  4. bunnyfluff

    bunnyfluff Member

    I just found out I have Lyme (and probably not FMS/CFS) although my tests of course had been neg. This is not uncommon if you read about it. I saw a new DR who is a microbiologist who looked at my blood "live" on a slide under the microscope and we saw the Lyme big as day.

    She said that unless someone is deathly ill from Lyme alot of the time the tests read neg. Also, if you have ever used antibiotics in the past, you can get false neg., it causes the Lyme to react differently.....all kinds of stuff.

    I have started herbal treatments for Lyme, and I already feel better. Before I just kept getting sicker and sicker. I feel like I am on the right path. I say don't give up. I didn't feel like FMS/CFS was a Dx~ You know, there's nothing we can do, take some anti-depressants and go away. They didn't know I had Celiac's and it almost kiled me. I lost faith back then.
  5. jarjar

    jarjar New Member

    I agree it is so sad how ignorant the medical community is about so many diseases. It also pains me to see so many of the fm/cfs board going thru their life clueless as to what is making them so ill.
  6. estelita

    estelita New Member

    I have had FMS for about 6 years... well, so they say. I had a neurologist in NJ who thought I was positive for Lyme, but kept testing negative. Well, I had two kids and am now back in the search for what us wrong and how to treat it. My rheumatologist here in PA now also thinks its Lyme. I would love to hear more stories from the misdiagnosed.... and especially treatment and symptoms from those who were like me and were in that boat for 5+ years.
  7. mollystwin

    mollystwin New Member

    The last two years have been pretty hellish. I was misdiagnosed as CFS and MS. I had two negative lyme tests before I tested positive with an ingenex test.

    I am now in treatment for lyme and on my way to recovery. Find a doctor who is knowledgeable about lyme and get an igenex test. There is also a new test by Florida research lab.

    I think it's important for anyone with CFS or fibro to rule out lyme disease. Many of us or most of us end up having lyme not cfs or fibro.

    Good luck to you@!
  8. grace54

    grace54 New Member

    That ? has been bothering me for some time. I believe that fibro/fatigue are just names given when we don't know what is making us sick.

    I decided for my own sanity that I had to rule out everything that I could as I have been ill for seven years and been to The fibro/fatigue center and am still ill. I was never tested for Lyme so I found a young pA near me who has treated Lyme and we ordered an Igenix test which came back negative but questionable so we ordered the test from Central Florida Research labs. and should have results Tuesday.

    The PA said he would treat me regardless of tests results so I just started ABX and cats claw.The way I see it is that I have a chance of getting better if I treat the Lyme but if I do nothing I will stay sick. Even if the treatment causes some discomfort, I have to rule it out. There are quite a few people here that will be able to report their treatment results soon. It will be nice to know how many of us actually had Lyme or another infection.
  9. estelita

    estelita New Member

    My issue now is that I have an 8 week old son and I am breastfeeding. So a huge part of me is concerned that I'll have to stop for treatment. Any clues?
  10. grace54

    grace54 New Member

    for last ?
  11. twitcher

    twitcher New Member

    I'll make it as short as possible but my story will really make people think about lyme. In 1992 I had 3 bullseye rashes. I was an avid hiker with my dogs. I didn't think a thing about the rash and never even heard of lyme. I started getting all kinds of horrible symptoms following the rash....eye pain, floaters, joint pain and swelling, sore throats, diarrhea. It was one thing after another but I did not see a doctor until....about 8 months after the rash I developed a horrible infectious, neurologic syndrome. I had twitching from head to toe, numbness, tingling, dragging a leg, fevers, vomiting, diarrhea, blurred vision, brain fog to the point I would be driving and couldn't remember where I was going. I had whole body rashes that would pop up for weeks with no known cause. These symptoms lasted for months and months.Anyway, I ended up with an MRI of the brain, spinal tap, EMG etc.. all results were normal. The neuro said I had a central nervous system disorder but he "had no idea" what it was. My brother mentioned lyme to me about a year after the symptoms started. He is an avid deer hunter and read it in a magazine. The doctors laughed in my face here in Ohio. I went to PA and was treated with antibiotics. After about 4 months I started feeling better. I quit going to the doctor. I did recover after about 5 years. It all hit me again in 2005. There's way too much to tell than I could write here. I am in treatment again. I have never had a positive lyme test, not even from IGENEX. However, I respond to antibiotics.


    Twitcher
  12. mollystwin

    mollystwin New Member

    I think you should check with your doctor about this question. Do you know for sure that you have lyme, or do you suspect it? You may want to do some research to see if lyme can be transmitted through breast milk. You may want to stop for that reason. I breastfed too, and loved it and I hate to suggest to anyone to stop, but this may be a good reason.

  13. estelita

    estelita New Member

    I'm still waiting for tests to come back. I have an appt the middle of June to further discuss the whole deal... and possible treatment.
  14. hopeful4

    hopeful4 New Member

    With you reporting 37 of 38 symptoms, I'd say that's a huge clue. Lyme can mimic many other illnesses. It is best diagnosed by a very knowledgeable doctor, an LLMD (lyme literate). I couldn't agree more with what Victoria has said.

    I suggest going to lymenet dot org. There you can post for seeking a recommendation for a doctor in your area. You can also find a support group and those folks can be of great help to you.

    The lyme bacteria can hide remarkably well, so tests can be false negatives. With your symptom picture, a qualified doctor can make a clinical diagnosis for you.

    I had been diagnosed with CFS for 5 1/2 years, and had all but one of the needed tender points for FM. Then I got the Lyme diagnosis from someone who actually knew how to diagnose it. Now I'm on the road (albeit a bumpy one) to recovery.

    Glad you came here to ask.

    Best wishes,
    Hopeful4
    [This Message was Edited on 05/29/2007]