Posted 6/1/2010 6:42 PM (GMT -6)
I have been on the Lyme site for quite a while but have a secondary DX of CFS. This is my first post on the CFS site. At this time the Lyme is somewhat "managable" but the CFS is unreal! My pain doc has stated that CFS can be as debilitating as heart patients in end stage failure! I sleep for days and literally cannot get out of bed. My Immune functioning is virtually nonexistant and my Ebstein Barr Levels are 20 times the norm according to the Rhrumotologist IGGand IGM. Lots of other "out of range" items on my labs as well Thyroid,Occult blood in urine, Sed rate,RDW. At this point I have scheduled to see a endrcologist to hopefully develop a plan so that I can function.
Here are a few questions:
1. Is an endrocologist the best doc to treat CFS? If not who?
2. What meds or combo of meds are most helpful?
3. Has anyone had IVIG treatment? If so, has it helped? (I am afraid of tainted products)
4. My latest labwork shows deficiencies in Liver functiong, EBV, TSH thyroid out of range -it reads THS 3rd Generation 8.89
with the ranges of 0.20-2.70
4 Severe reactions to gluten (no dx but the Lyme doc put me on a Gluten free diet which has helped a great deal.
5.Anyone had bio natural hormonal type meds? If so has it helped (I've tryed synthroid and it helped. I feel that it is not the correct doseage.
Pardon the spelling errors!
Any feedback IS GREATLY appreciated!
Waiting in FL
Bull's Eye Rash 9/07 (DX as cellulitis),Menningitis 10/07, Smptpms:headaches, extreme fatigue, insomnia,P DX "Depressed & busy mom" , Rheumotologist 2/08 Lyme test equivocal, LLMD seen4/08 Igenex Positive, Additional DX Ebstein Barr, Chronic Fatigue S, Adrenal Gland Deficiency,2 Rounds of Rochepin May 2008 &Summer 2008 December 2008