I was diagnosed with Chronic FAtigue Syndrome 10 yrs ago.
My symptoms were (and are) achiness, horrible fatigue, can't exercise or have to be in bed for days, jerky movements of arms and legs (kind of like twitches but no one notices them but me), numbness on the left side of my body, speech difficulties, ibs, shortness of breath and the list goes on and on.
I thought for years I had MS, saw 2 neuros, 1 who said I had CFS and one who said I had "anxiety" and sent me to a shrink.I've seen an allergist, a pulmonologist and have had my heart checked out. I have all these strange symptoms and it's driving me crazy.
I have recently started going to the FFC in Atlanta and am on numerous supplements, etc and the next step will be to test me for underlying viruses (lyme, mycoplasma, ebv, etc).
I was wondring what your symptoms/experiences are/were. Do I sound like you with Lyme?
Thanks so much...
Posted by Linda LD (Member # 6663) on :
Who is the FCC in Atlanta?
There is no LLMD in Atlanta--I have a sister-in-law there and she has Lyme but no doctor--the CDC has a strong hold on Atlanta.
See if you can just go to a walk in clinic and have your blood sent to Bowen or IGENEX--that's a start, if you show all the right bands--then you know...You may need to go to Alabama or Florida for treatment--now that J in Charlotte is in trouble it is hard to refer you to anyone...Do you have a nice doc who would humor you on this?
Linda
Posted by cutie (Member # 8468) on :
The FFC is the Fibromyalgia and FAtigue Center. They have several locations throughout the USA and believe that CFS and Fibro are the result of underlying viruses that have not been diagnosed and/or hormonal insufficiency. They test for lyme.
I keep hearing that the test for Lyme is not accurate. What is the truth on this?
Thanks!
Posted by riversinger (Member # 4851) on :
Hi Cutie!
Your list of symptoms, and diagnosises, is very similiar to what mine looked like two years ago. I was told I had CFS, FMS, IBS, MCS, the whole alphabet soup. I was really sick for 11 years before I was tested for Lyme. I was one of teh fortunate ones who had clearly positive tests.
In fact, I have now had positive tests for two coinfections as well, Ehrlichia and Bartonella. Treatment is not simple, but I am much improved.
My CFS support group has almost turned into a Lyme support group, as more and more people are rediagnosed. I highly recommend that you learn as much as you can, and look into this as the possible cause of your symptoms.
If you go to the Medical Forum, there is a post for Newbies with LOTS of info. Welcome.
Posted by bettyg (Member # 6147) on :
yes, goo to MEDICAL and look at top post by TREEPATROL, NEWBLIE LINKS. Go down to Igenex, Bowen, & MD labs for western blot testing.
Yes, tests are diagnostic but MDs are the ones to do CLINICAL dx based upon all your symptoms. blood tests just confirm or point them in the right direction otherwise.
Print off newbie links, print off Dr. B's 2005 guidelines, read important stuff first, check it off as there are many months of reading there.
Posted by henson2 (Member # 463) on :
Lyme is not a virus, as you mention above. It is a bacteria.
I would strongly recommend seeking out a specialist who has expertise with Tick Borne Diseases, of which Lyme Disease is one.
Good luck and best wishes
Posted by karatelady (Member # 7854) on :
I've been going to the FFC and they have me on Heparin for hypercoagulation, Lumbrokinase to aid the Heparin, Zithromax and Ceftin abx, along with Samento and Cumanda.
They also treat all our hormones which are usually totally messed up with the lyme. They use bio-identical hormones which are much healthier than synthetic.
They've told me almost all patients who come in with FM/CFS have viruses and/or bacteria and many test positive for lyme.
I think they are very thorough and are testing for lyme through Igenex. They also test for viruses which most lymies have so they are treating me with anti-virals too.