Sore Achy legs and upper Gluteal area - with Fatigue and general weakness

[callctr2000]

Hi.  I'm a 41 year old male in Canada and I also suffer from weird symptoms that have yet alluded all of my physicians.  I have been investigating this for over a year and am baffled that I cannot find one other person with the same/similar symptoms.  I can't be the only one? 
Current Symptoms: Achy sore legs (feels like I have run a 5 mile marathon - all the time) and really sore muscles/tendons in my upper buttock area.  In addition I have periodic right facial nerve burning and also in my right arm.  Bad fatigue and lack of energy are a huge issue for me as well.  I go through episodes where my symptoms are worse and during those times I am also nauseous and feel generally unwell. The buttock pain seems to be the worst.  For a two month period I had to sit on a donut cushion and ice my backside constantly.  I thought I was going to go out of my mind from pain.  My quality of life is almost non existent.  I do have (very few) remissions and get a day or sometimes a week where the symptoms are almost gone.

Symptom History: 
In 2006 a two week episode of the symptoms occurred. (Achy legs, sore buttock area and extreme fatigue/malaise) I was in Mumbai India on business and was hospitalized, pumped full of Anti Malaria meds and antibiotics and made a full recovery.  6 months later I had another "attack" and was sick for two weeks then fully recovered on my own.  In India no doctor could provide a diagnosis.   
8 months go by and I'm back in Canada and get another attack - down for two weeks and fully recovered on my own.  Over a year and a half goes by and I am playing a crazy, insane game of tennis and I woke up the next morning with these mystery symptoms in full bloom.  This time they do not go away, the stay and get worse.  Achy Legs/buttock area, malaise/fatigue, and these waves of weakness where I thought I would pass out.  Oddly these waves would come on three or sometimes ten times a day and would have the blackest mood affect on me.  As soon as the wave passed...the dark mood would lift as well.  On one day burning nerve pain shot up my torso into my face and up my back into my skull.  I was so frightened and was sure that I was going to die.  I could not walk drive or even really take care of myself. 

That stage was a year ago, I am much better now comparatively speaking...but still suffer from the current symptoms I mention above - which are debilitating enough. 
I have seen a rheumatologist twice, 3 neurologists, 1 Tropical disease specialist, 1 internist and every holitic/natural option there is out there.  In addition I have had every blood test they can think of and have had an MRI of my head, spine and pelvic area.  Heavy metal testing, Dna, Anti dna and all of the neuro tests that they could think of.
I have had three ELISA Lymes tests all negative.  Sent my blood to Igenex for a Western Blot for Lymes and they sent back very bizarre results that I now need to go back to Infectious disease to interpretation. 

So, that is my story and my life at the moment.  Anyone have similar symptoms or ideas?   
Thanks for reading. 

[Samantha]

  to the forum

After reading your story sorry I don't have any idea off hand, I usually re-read and re-read members stories and research a little, so if I find anything that may help I'll be sure to post.

 
Sammy

[Keilia]

 

I wish I had some idea =( I am sorry I don't. 

[callctr2000]

Hey, thanks for reading and giving it some thought - much appreciated.

[SuperLine]

Any GI issues currently or when in India?   Are you taking any supplements?   Magnesium (Chloride) would be beneficial for the sore muscles. 

[callctr2000]

Hi, I've seen a Gastro specialist and he ruled out any related issues.  I did have gastric challenges while in India, but they cleared up when I returned to Canada.  I wrote that off to the food quality and conditions?
Thanks for the supplement advice, I started taking them about a year ago recommended by my naturopath.   The only thing that has briefly helped my condition was recently.  Grasping at straws my GP and decided to try a course of Tetracycline for 21 day.  Three days after starting I improved tremendously.  Unfortunately it only lasted 5 days and then I had a relapse so to say.  My GP was at a loss as to why I would have felt better and then declined.  I wouldn't be opposed to a hefty IV antibiotic therapy like I had in India...but no physician in Canada would prescribe that.

Thanks for reading my story...i appreciate it.

[SuperLine]

So no pains in the gut, abdominal area... gas, bloating... unformed stools?   change in bowel habits before to after India?   Abdominal distention?   nausea?

I think it is a pathogen in the gut, possibly protozoa.   Tetracycline will hold some protozoa back but will not eliminate them.  another drug has to be used in conjunction with tetracycline.  Normal GI testing is not 100% to find parasites.  I did multiple tests with negatives until I did a special test which came back positive (they claim a 100% identification).   They are very hard to find.   

[kattsqueen]

check into muscular dystrophy (limb girdle weakness) possible hypo or hyperkalemia partial paralysis. Muscular Dystrophy Association web site.. these conditions are often misdiagnosed as chronic fatique or fibromyalgia,, some else to check.

katts

[kattsqueen]

Ps these conditions tend to run in french canadian families (my condition in particular, andersen tawil syndrome)

katts