Lyme?Fibromyalgia? Autoimmune disorder?

Hello everyone!
I would just like to thank you in advance for Reading my post. I am a 21 year old male who was once extremely active but my health has deteriorated over the past 5 years. I have been to over 25 doctor visits over the past 5 years but have been unable to find a direct cause for my symptoms. I can’t even count the amount of times I’ve had blood taken (>20 times). My symptoms started gradually and have now gotten to the point where it’s all I can do to get out of bed and make I through the day. Here is a list of my symptoms:

• Extreme fatigue and exhaustion. I don’t just mean that I am tired all the time but that I am fully exhausted. Even just walking down the street can seem like a feat at times.
• Muscle and joint pain. My muscles and joints are soar all the time. It feels as though I have arthritis although I have been tested for it and do not have it. My neck is probably my largest complaint as it is so soar that I have a constant headache. If I do anything even slightly physical I will be even more sick and soar the following day.
• Jaw pain and stiffness
• My eyes do feel soar at times but this may be due to wearing contacts as my vision has decreased over the last few years. Before that I had perfect vision.
• At times i feel as though I have pressure in my ears.
• My head just feels really foggy as if its more difficult to think things through
• Loss of sex drive and I no longer feel as though I can get as full of an erection.
• I have an extreme sensitivity to alcohol that I never use to have. I don’t mean that I get drunk easy but I get hangovers very easy. Even from just having one drink it makes me feel worse the next day.
• I have a rash on my lower legs and forearms that’ seems to come and go. (Possibly Eczema)
• I periodically have blood at the end of my stools. Maybe once every few months or so but it is more blood than you would from just cleaning yourself to hard.
• I have an increased sensitivity to motion sickness. Even just driving will make me feel light headed and woozy.
• I also tend to shake. My hands literally shake all the time. Although I feel I have had this since I was young it has gotten worse in recent years.
• My symptoms seemed to get much worse after taking minocycline antibiotics for acne and never really got better.
• Before I was chronically sick I spent about 10 days in the hospital with some extreme form of illness that had flu like symptoms including me fainting, puking and diarrhea. I did seem to make a full recovery from whatever caused this illness so I’m not sure if it is related or not.
• I have some minor digestive issues but nothing to bad. One thing I notice is that if I wake up and chug a glass of water I will have diarrhea about 30 minutes later. If I drink a glass of water later in the day after eating I will be fine.
• Seem to get sick from antibiotics

I have been tested for a lot of things and am running out of things it could be. I spent some time at the mayo clinic seeing various specialists and was diagnosed with fibromyalgia basically because they just couldn’t find anything wrong with me so I struggle with accepting the diagnosis. All tests and bloodwork seem to come back normal except a moderately elevated anti-histone and slightly elevated liver enzymes. My testosterone is near the very bottom of the normal range which I feel is unusual for someone my age. I did also have a positive ANA panal at one time but it was just after I was taking the minocycline so that can cause a positive reading. I have had 2 negative readings since then. I thought it could possibly be due to drug induced lupus from the minocycline but according to specialists I would be feeling better by now if this was the case. I have been tested for lymes disease (negative) but still feel this may be a possibility although I do not live in a Lyme endemic area. I just sent blood to a lab in California called Igenex for further Lyme testing. I live in Western Canada. I even did a candida diet religiously to see if that would help but it didn’t.

My thoughts:

I think it could possibly be chronic lyme as I have read about a lot of controversy in its testing and treatment. Some MDs believe in chronic lyme but most do not. I also think whatever is making me sick seems to react to antibiotics since I had a worsening of symptoms when taking the minocycline. I also feel that the elevated anti histone has something to do with it and possibly the slightly elevated liver enzymes’. I think there is an extremely low chance of colon cancer because of the blood in the stool and the elevated liver enzymes but this would be a long shot. I may request a colonoscopy as I have yet to have one done. I am very desperate and feel like the only thing I haven’t tried is a spinal tap to check for some form of virus or something. I am considering doing this operation.

If you have any suggestions on what it could be or tests I should have done that would be greatly appreciated. Even if it’s a long shot.

Thanks for reading!

Wait for your Igenex test result.
Once you get it it should direct you to your next steps.
How long for that result to come back ?

Hey Everybody,

Thanks so much for the info. I'm on board with the exact same symptoms. Have had 6+ years of undiagnosed extremity pain, fatigue, nerve pain, GI issues, vicious anxiety/depression, and most recently a 6 month bout of 24/7 debilitating head/face/eye pressure and pain. All MRIs, blood tests, diagnostics, exams are normal or negative, except for a slightly elevated Sjrogen's antibody. My ordering rheumatologist dismissed the idea of this causing such havoc, and I'm going to get a second opinion, but I can't get past Lyme's or other infection/bite possibilities. My Western Blot was negative, but I have had the CD57 ordered and will be having that drawn Monday by LabCorb, which from what I read is one of the East Coast labs who correctly does this. Is this a definitive yes or no to Lyme's, or is there another false-postive issue involved with this too? What else should I have ordered in the way of co-infections, vector-borne illnesses? I have a very caring GP, but in terms of western medicine, what is the best way to have said tests ordered and all accounted for?

Thank you in advance for your help and contribution to this forum.

Thomas

So I have the same questions. One positive band on IGENEX. Ive been told that I have lyme, then fibro and now maybe lupus. Like how do you know for sure? I felt better on antibiotics but then things went down hill, because im too sensitive to meds, cant swallow pills and had a bad reaction to herbals. what to do? Im just not sure what direction to go in anymore.