New to Forum Please help

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Waiting In Fl
Regular Member

Date Joined Mar 2008
Total Posts : 178
   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! yeah
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

Veteran Member

Date Joined Jul 2007
Total Posts : 715
   Posted 6/2/2010 6:53 AM (GMT -6)   
I was originally diagnosed with CFS- then after two years another doctor diagnosed me with Lyme. I went on abx treatment for 3 years with no success...including IV and orals.
I was finally sent to an endocrinologist and she discovered I was hypothyroid (primary) not secondary like my Lyme doctor had said. My levoxyl dose was way off so that has been corrected but I don't feel any better.
She is currently trying to wean me off the cortef I have been on for 4 years but it has been difficult.
I have tried tons of supplements to help with the CFS but so far nothing seems to help me. I have a new PCP who is working with me and kind of starting from scratch since this all started in 2004.
I am going to be seeing a sleep specialist because one of my main problems is unrefreshing and disturbed sleep which I am sure contributes to the fatigue.
I don't have too much pain except some painful sensory symptoms in my calf and foot. Sometimes very painful dry eyes and episodes of sweating.
The chronic exhaustion and fatigue is what debilitates me and makes me feel as though I am going to collapse at times.
He told me the next step was to see a rheumotologist (sp) because that is who treats people with CFS. Not sure he will be able to do much since I really don't have pain...
If you are interested I can give you a list of what I have tried in the past 6 might be of some help to you.
I hang out at the Lyme board too..or use to anyway
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