Anyone misdiagnosed w/ CFS and have Lyme? or think they have both

Discussion in 'Fibromyalgia Main Forum' started by sickasadog, Oct 8, 2005.

  1. sickasadog

    sickasadog New Member

    I am confused about something here. I was diagnosed with CFS for 10 years. Now I found out I have late stage lyme disease, which would acccount for my symptoms. I have fibromyalgia secondary to the lyme. It seems that many people here w/ CFS have found out they have lyme but that it is just a small contributor to their symptoms. My lyme dr feels that the Lyme IS the cause of the CFS..... well, i should clarify, he doesn't believe in CFS- he thinks it is a name for something that is underlying that was not caught. It just sounds like everyone here who has lyme also believes they still have CFS and the lyme is just a small component.

    Just curious..... for those that have lyme.... are you on antibiotics?? or are you treating all of the other stuff together or first?? In other words, do you see the Lyme as the cause of your symptoms or do you just see it as you have CFS and Lyme???

    For those that don't know..... Lyme Disease can cause all of the same things CFS can, if not more. It can cause hormonal deficiencies, latent infections to reactivate, low natural killer cells, candida (opportunistic infections), lots of pain, memory problems, etc etc etc.

    I am asking this cause I have a friend who has been going to the FFC and was diagnosed with Lyme Disease there. They acted like it was no big deal and just a part of the CFS. Well, she actually just went to my Lyme specialist and he told her that the Lyme is a MAJOR deal and probably responsible for most if not all of her symptoms. He also was dismayed that the FFC dr did not test for coinfections.

    In my opinion and in many on my lyme board, Lyme Disease is often misdiagnosed as CFS, not just a small part of it. Read the article written by Kent Hortlof of the FFC on this very website.

    If anyone w/ CFS diagnosed w/ lyme- how are you treating it?? Are you going to a lyme knowledgeabe dr?

  2. Wasabi

    Wasabi New Member

    I think Lyme *is* a big deal. If left untreated, it can be extremely debilitating. Writer Amy Tan talks about having wild hallucinations and seizures before she was finally diagnosed with Lyme. A lot of her symptoms did overlap with FM/CFS.

    I have FM, and at times I have wondered if I actually have Lyme. It turns out, however, that my FM specialist treats underlying infections, and the antibiotic portion of the prototol is pretty much the same as it would be to treat Lyme: Amoxicillin, Doxycycline, Rifampin, and Flagyl for up to a year or several months after I have no symptoms. So, I've let it rest, because the treatment I'm undergoing would treat Lyme too, if that's what I have.

    In any case, I think underlying causes are serious, whether in CFS, FM, or Lyme--or whether the underlying cause *is* Lyme itself. My opinion is that if you suspect it is Lyme, you should definitely be tested. If it is Lyme, it needs to be addressed and treated by a good specialist. Otherwise, the Lyme disease will progress, and that can have serious consequences.

    In CFS and FM too, I think it's critical to treat underlying causes. In my humble opinion, I think it's essential to finding relief. Otherwise, we are just treating symptoms, and since the underlying cause still exists, we will only be maintaining our present state of existence at best. If we can figure out some of the underlying causes (Candida, stress, chronic infections, allergies, etc.) there is the possibility for improvement.

    My sense is that FFC doctors focus specifically on FM and CFS, they are not exactly trained to treat Lyme. Since that is the case, they are more likely to focus on FM and CFS as possible diagnoses, but that doesn't mean that you shouldn't explore the Lyme possibility too with a Lyme specialist.

    I hope you'll find answers. Best wishes!
  3. pumpkinpatch

    pumpkinpatch New Member

    I have to say that at my first FFC Denver appointment the Doctor there mentioned lymes right away. She wanted it tested through Ignex and also the co-infections.

    The both co-infections came back negative and IgM Igenex was IND which could go either way. I don't have the tremors, seizures, heart problems etc. I am being treated with the antibiotics for the lymes and clymadia pnenomonia (both same treatment). My pain has definitely increased which could indicate stirring up those pesky bugs.

    I'm still going with the theory to treat everything at once and hopefully over time will see significant improvement.

    If this plan doesn't work I have the LLMD's number close at hand. Last week I was alarmed to hear that he is now under investigation! That can't be happening. He has helped so many desperate people. Apparently he talked with a doctor who had a patient on IV antibiotics and that person died.


    [This Message was Edited on 10/08/2005]
  4. sickasadog

    sickasadog New Member

  5. tansy

    tansy New Member

    which is a major contributor to my ongoing health problems, as I discovered during my herxes, but by no means the only one.

    Yes lyme is serious, but then researchers describe ME/CFS as serious too. We each have the same illness and/or pathogens whatever the Dx label they're given, or when they are Dx as lyme disease.

    I am using a non ABx regime. I am not against ABx but weighed up all the pros and cons of their use in late stage lyme and opted for the alternatives. What I decide in the future will depend upon how things go.

    I am having my borreliosis/lyme treated by a LLMD who uses both ABx and alternatives, the other issues I am mostly self treating. So far it's taken considerably more than just agents to treat the borreliosis/lyme to bring about my current improvements.

    IMHO is important to always keep an open mind and be aware of the bigger picture. Ignoring other factors may hinder or prevent remission.


  6. happygranny

    happygranny Member

    Lyme disease has seriously been brought to my attention recently when an acquaintence of mine who had been dxd with CFS and FMS for over 10 years, started a Lyme treatment using Ketek and fLagyl.

    After 3 months on the protocol she feels better than she has in over 10 years. Still a long way to go, but so happy to see a light at the end of the tunnel.

    We hadn't spoken in a few years and I had moved to another province but she tracked me down to share the good news and give me information about it if I was interested.

    We are in Canada and there are only 2 doctors thatI know of who can go "Outside the box" when it comes to treating Lyme disease. I am flying from Winnipeg to Hope BC to see one of those two doctors. I think it is okay to post the Canadian Lyne disease web site, it doesn't sell anything:

    The other thing I learned at that site was about using the "Salt/C Protocol", and I have started it today, just to see what happens. It involves using a mix of sea salt and Vit. C. The way I read it being used by someone at the Lyme discussion board was 1/4 tsp sea salt and 1/4 tsp Vit C dissolved in a glass of water and sipped throughout the day. she built up to 3/4 tsp of each after one month and has herxed as well as had improvement in pain levels and energy levels.

    Even though I plan to see the Doctor in Hope and likley start an ABX protocol, it is okay to start the Sea Salt/C protocol at the same time.

    It will be interesting to see what happens and I appreciate hearing other's experience with Lyme.

  7. kellyann

    kellyann New Member

    I was tested and turned out postive on lyme plus four other infections. My Dr put me on Doxycycline 100mg 4 times a day. I have been in incredible pain since starting, and have had bad headaches, fevers, chills, and nausea. I keep trying to tell myself that must mean the medicine is working to kill off the infections. I had never thought about having lyme before now, but as I checked the symptom lists on a few websites, it does fit me exactly. I have almost every symptom. I just believed there was a reason for my fibromyalgia, and now I I know it is lyme disease. I hope I can be cured now, but I have had it such a long time now. My joints hurt so bad, feels like they are on fire.

  8. happygranny

    happygranny Member

    In some ways it must be a relief to have finally gotten a Dx and a direction to go in for treatment.

    Although if you have been reading the Lyme websites, treatment isn't an easy thing either, with so many co-infections.

    I am hoping that the awful Herxing you are having has settled down, and you are starting to see some improvement.

    Best wishes with your treatment progress.

  9. kellyann

    kellyann New Member

    Thanks for the words of encouragement! I am still herxing so bad. But I am taking that as a sign that my medication is working. I have read a lot about lyme disease lately and it is a mean bug to say the least. I am so happy to have found a doctor who actually cares if I am sick or not. She is wonderful! If anyone needs a doctor in the state of Georgia, I can tell you where a great one is!

    Hope you are having a pain free day!
  10. pumpkinpatch

    pumpkinpatch New Member

    Kellyann: I'm herxing bad today. Taking the 3 doxy and 1 biaxin. That's about all I can handle in one day.

    Also my pain has increased tenfold. I've been on antibiotics since July 25.

    Also other infections. That biaxin is powerful.

    I'm going to the FFC and they are treating everything at once. Have to be tough to brave through this.

    [This Message was Edited on 10/15/2005]
  11. victoria

    victoria New Member

    My teenaged son had some major problems with anxiety/depression, wrecked high school for him, then started to have weird physical symptoms similar to mine...

    took him to best LLMD in the southeast, he came out as active Lyme plus having had it for at least 2 years - explains everything going on with him mentally & physically...

    His physical symptoms were 99% mine too, altho I didn't have the problems with depression; I am doing MP since before we started realizing he was having problems... I am doing better as well.

    For him the abx knocked him off his rear end for several months, I started to get ready to file for SSI for him since he just turned 18; but now he is suddenly feeling beetter and trying to work full time. We'll see how he does, I am hoping this is an onward and upward curve for him (and me!).

    I have always kept in mind the statistics that when syphilis (also a spirochete) was discovered, what were thought to be over 100 distinct diseases were cleared up... the same happened when TB was discovered... how these diseases showed up in individuals was determined by individual susceptibility.

    I really feel the same is true here for most of us.. altho it may not all be Lyme (BTW, there are over 100 different strains of BB in N. America!), some may be infections with other tick born diseases or co-infections with opportunistic bacteria and/or virii - there are a whole lot of those too.

    I do think the uprise in it correlates to the upswing in the deer population, LLMDs think it has probably now also transferred to mosquitos as well as being transmitted prenatally and thru semen....

    wonder how much has been spread thru blood transfusions too?

    Lyme IS a big deal... the clinic my son goes too recently did the grand rounds at Duke U. in N. Carolina, so even they are starting to finally look at it seriously.


  12. dontlikeliver

    dontlikeliver New Member

    and my guess is that if all those here misdiagnosed with various non-diagnoses like CFS and Fibro (which are not really diagnosis but just names for a collection of symptoms, i.e. 'CFS'= 'you are fatigued chronically and 'Fibromyalgia' = 'your muscles hurt', they are not diseases in and of themselves) - this place would be not far from empty.


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