Hi, I've been on a couple of times before but my question now is-I was dx with lyme in late 80's or early 90's after years of uneventful testing until finally, I strongly suggested testing for lyme(not sure what the test was at that time)and it was positive. Spent 1 month on doxycyline 100mg twice a day.Felt AWFUL at first but after 1 month symptoms were gone. Repeated lyme test about 1 month after antibiotics were finished and it was more positive but I felt well so no more treatment by Dr. Everything was fine until about 6 years ago when I started with same symptoms but now dx with FM because of symptoms and trigger points. The rhemy that I went to questioned whether I really ever had lyme and really had FM before. Question- does chronic lyme act like that,waiting so long for symptoms to reappear, and can you have both lyme and FM? Sorry I wrote so much, just trying to fiqure all this out, don't get much help from Drs. Thanks
Posted by bettyg (Member # 6147) on :
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quote:Originally posted by kasilou: Hi,
I've been on a couple of times before but my question now is.
I was dx with lyme in late 80's or early 90's after years of uneventful testing until finally, I strongly suggested testing for lyme(not sure what the test was at that time)and it was positive.
Spent 1 month on doxycyline 100mg twice a day.Felt AWFUL at first but after 1 month symptoms were gone.
Repeated lyme test about 1 month after antibiotics were finished. and it was more positive but I felt well so no more treatment by Dr.
Everything was fine until about 6 years ago when I started with same symptoms but now dx with FM because of symptoms and trigger points.
The rhemy that I went to questioned whether I really ever had lyme and really had FM before. Question- does chronic lyme act like that,waiting so long for symptoms to reappear, and can you have both lyme and FM?
Sorry I wrote so much, just trying to fiqure all this out, don't get much help from Drs. Thanks
Kasilou, I split up your long paragraphs into shot ones and DOUBLE spaed for those of with svere neuro ... can't read or comprehend as is. Please do this in the future making it easier o read * info.
Posted by prconn (Member # 7113) on :
Hello,
It is my neurologists and LLMD opinion that FM is a symptom and not a diagnosis.
They both feel it has to have some kind of underlying cause. Although many are diagnosed with FM it's eitiology remains a mystery.
In my case it would be Lyme. I hope this helps.
Take care and peace.
Posted by EtherealGirl (Member # 4780) on :
I agree. Fibromyalgia is a symptom of something else. I've been told that I have both Chronic Lyme and Fibromyalgia.
I actually think that they are the same thing, except that there is no treatment for FMS. There is treatment for Lyme.
So, you can either accept the FMS diagnosis and suffer, or believe the Lyme dx and get treatment. That's the boat I'm in.
Posted by firecop1066 (Member # 6920) on :
My lyme came in two stages once in 1998 with swollen lymph nodes in neck arm pits and groin, numbness in feet and hands, headaches, and facial pressure fatigue, and incomnia...(i was not diagnosed at that time however went on tons of abx for "sinus infections"....over a few months felt better and my immune system must have supressed the disease for the next 4 or so years.
Then WHam it came back like a vengance in 2002 after being up north for two weeks in august...of course i played the merry go round with the FMS diagnosis, then after about 2-3 years finally had the sense to ask for a lyme test....it was positive...
I agree with the above FMS is a syndrome, a collection of symptoms beloning to a disease be it bacterial, viral, hormonal, mycoplasmas etc...
I guess in answer yes lyme can act like that, supress itself with a healthy immune system then something else may come along and bring it back out of hiding...Jill
Posted by shazdancer (Member # 1436) on :
I first came down with Lyme symptoms in 2001. Relapsing this past year, my new symptoms included tenderness in many of the trigger points that are diagnostic for fibro, although I didn't know that at the time.
It included the 2 points near the collar bones, which was such a weird place to have soreness. At times, I'd had to tuck the seatbelt under my arm, as the pain of it laying across my upper left chest was too much to bear.
The tenderness there is completely gone, after being treated for Lyme and babesia.
Regards, Shaz
Posted by Aniek (Member # 5374) on :
Fibromyalgia is not a disease. It is a syndrome. All a syndrome is is a group of symptoms. There is no known cause for fibromyalgia.
Many people believe fibromyalgia is caused by infections. Many people with lyme, including myself, have had a fibromyalgia diagnosis. Most likely, Lyme and other coinfections can cause the fibromyalgia.
If you've had fm symptoms for so long, then you will probably need more than lyme treatment. Really good physical therapy and pain management will probably be necessary to keep herxes under control and to help you bring your body back to "normal."
I had lyme for 17 years before diagnosis including 2 years of constant pain. Honestly, I don't expect to ever be fully pain free, because I think that there was some damage to my system. But I am already better than I was, and know I will continue to be. But I owe a lot of that to pain management, pt and yoga.
Posted by hopeful4 (Member # 8486) on :
Hi Kasilou,
Glad to see you over here. By the way, did you see the responses to your posts from me at immunesupport??
If you were treated for chronic lyme disease, which it sounds like you were, it is unlikely that 1 month of doxy at 100 mg/day would cure it. I believe that it is sometimes effective for someone newly infected.
Lyme is a tricky critter, and can take different forms, and hide within the tissues and cells precisely at the time we are trying to kill it with ABX. So, you may have felt better after the AWFUL herx you must have experienced, but that did not necessarily eradicate the lyme.
In addition, I did not hear you mention testing or treatment for co-infections. Have you been tested or treated for these?
You can have both lyme disease and FM. It may be that the lyme was one of the underlying infections that triggered the FM. FM has a diagnostic criteria, and if you meet it, you have it. If you are diagnosed with lyme, and meet the criteria, then you have lyme. I have CFIDS/FM and lyme.
It can be a lot to digest all of this. Try looking at some of the info under Medical, Newbie.
Check out the link below, and also read up on Dr. Burrascano's Diagnostic and Treatment Guidelines.
National Guideline Clearinghouse: Summary of ILADS Guidelines for Lyme Disease
Decision to Stop Antibiotics
"Several studies of patients with Lyme disease have recommended that antibiotics be discontinued after 30 days of treatment.
Complicating the decision to stop antibiotics is the fact that some patients present with disease recurrence after the resolution of their initial Lyme disease symptoms. This is consistent with incomplete antibiotic therapy.
Although the optimal time to discontinue antibiotics is unknown, it appears to be dependent on the extent of symptomatology, the patient's previous response to antibiotics, and the overall response to therapy."
Posted by kasilou (Member # 8818) on :
Thanks for all the responses.
What type of drs have you seen to dx the lyme?Are they all LLMDs?
Yes HOPEFUL4, I read your response on immunesupport-Thank-you very much.
Thanks again.
Posted by EtherealGirl (Member # 4780) on :
Cave, I was actually dx with Lyme before Fibro. I was treated with abx for three months, at which time my doctor said that was enough.
He said I have Lyme induced Fibromyalgia, and I would never get any better. Quite a life sentence, eh?
Posted by minimonkey (Member # 8693) on :
I have no wisdom to add here -- only to say that I am darn glad I didn't just accept my FMS diagnosis.... yes, I have the constellation of sx that are called FMS... it is pretty clear to me they are the result of the Lyme (and maybe other, unknown factors, too....)
Posted by vitch (Member # 8094) on :
Many believe Lyme and Fibromyalgia are the same disease. The problem is the Lyme tests miss most Lyme.
Posted by valymemom (Member # 7076) on :
My son at 19 was diagnosed with fibromyagia by one of his neurologists and his holistic chiropractor.
Of course, months later he had Igenex testing and diagnosed with lyme. (Within the first four months of his journey his PCP ran a lyme test and told us it was negative.)
Therefore.....we never thought of it again.
He still has his original trigger point pain.
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