I don't think I have CFS...but not sure as my symptoms are very close.

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callctr2000
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 4/13/2009 10:13 PM (GMT -7)   
Hi & thanks for reading...sorry for the length...but I don't want to leave out possible relevant information.

Between 2005 and 2007 I had four "attacks" of symptoms that put me out of commission for two weeks at a time. I felt a very deep muscle ache starting in my right leg, spreading to my groin, then across my buttock area and down my left leg. Along with this ache I had extreme malaise and fatigue and sore right groin lymph nodes. The attack would hit me within one day and disappear just as quickly. In case this is important, I was in Mumbai, India during the first two attacks and had every test possible undertaken with no results.

In June 2008 the same attack came on except it lasted over a month and then the symptoms increased & changed. Within one hour I could feel peripheral nerve burning/tingling run up my torso and back into my face and scalp. I could feel it in my eyes, tongue and even my lips. A week later I started getting waves of heat flow through my body (from legs to head) and with each wave I felt as if I may pass out. I could not drive or even leave the apartment for fear of fainting. The waves could come and go over 30 mins or sometimes even last for several hours. Each wave also brought along an extreme black depression feeling that passed with the wave. (please note that I have no history of any depression or anxiety).

Four months later I started a slow recovery and the waves of weakness started to get less intense and less in frequency. But to this day I suffer from peripheral nerve burning and tingling, fatigue/malaise, lack of stamina (tire easily), and the original very sore, achy legs, deep ache in buttock and sore groin lymph nodes remain.

Battery of Testing: Two Neurologists, Rheumatologist, two tropical disease/internal medicine and my GP. Head/Spine MRI, Head CT, Groin ultrasound, pelvis Xray along with too many blood tests to mention (including ANA) . I have also completed the whole circuit of Holistic practitioners. In addition I have been tested for Celiacs and to be certain just completed a four month gluten free diet. I have spend many hours researching online to see if anyone has had similar symptoms. End result is that no one knows. (I am currently on Gabepentin 300mg x 2 a day for the nerve pain) I have an arsenal of vitamins/supplements that I take to help with energy.

I refused to believe that I can be feeling so sick and weak and no one has a clue? A few more options for me to test...try steroid treatment, try strong antibiotic treatment, nerve and/or muscle biopsy. No one in the medical community has brought up CFS to me and I have heard that there must be a history of at least 6 months of constant symptoms?

Does anyone have any ideas? (thanks for reading!)

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 4/14/2009 10:01 AM (GMT -7)   

Check out the info on Lyme Disease.  There are also a number of other coinfections that are common with it.  Here is a link on the Lyme forum:

http://www.healingwell.com/community/default.aspx?f=30&m=725453

For various reasons, Infectious Disease specialists commonly miss Lyme Disease.  You could make a post on the Lyme forum and someone can give you the name of a Lyme Literate MD in your area of the country.  I'd suggest reading the Lyme info and then posting any questions you have. 


Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


callctr2000
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 4/14/2009 4:15 PM (GMT -7)   
Hey, thanks for the reply.
I have been tested by my GP for Lyme's twice but it came back neg. Nothing further was pursued.
I've never had a rash and haven't really been in a rural area...i live in the city. I sure would be relieved to find out it was Lyme's and go through treatment.
cheers.

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 4/14/2009 5:10 PM (GMT -7)   
It would still be worth looking over the Lyme info.  What tests were run for Lyme and how was it determined to be negative?  There are many false negative test results with Lyme.  Many docs still use the CDC tracking criteria as a diagnostic criteria (even the CDC says not to do that).  Even one Lyme specific band on a Western Blot test could be clinically significant given your symptoms.
 
I know we're used to the idea of definitive tests results.  Lyme doesn't work that way - primarily because they test for antibody response and not the bateria itself.  And probably half the people with Lyme didn't have the EM rash or remember a tick bite.
 
You've been thru so much it's worth asking the right questions now about Lyme.  Was it just the Elisa test (known to be unreliable but a common "gateway" test")?  Was it a Western Blot?  Were there any Lyme specific bands reported?  These are things worth looking into. 
 
Also, there are a number of other tick borne coinections that you could have. 
 
Just suggestions of course.  Many people on the CFS forum were later diagnosed with Lyme Disease. 
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 

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