Lyme?Fibromyalgia? Autoimmune disorder?

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BDJ808
New Member


Date Joined Jun 2014
Total Posts : 16
   Posted 6/1/2014 4:29 PM (GMT -7)   
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!

LoveTheLight
Regular Member


Date Joined Apr 2014
Total Posts : 112
   Posted 6/19/2014 7:23 PM (GMT -7)   
Hi. After posting a post like this years back and also feeling worse on an antibiotic ( like you posted )
I was pointed to possibility of Lyme and co infections which also there are viral panels for chronic fatigue etc

It was positive. CDC positive and Western Blot and Igenex positive.

I now am finally reduced from about 50 symptoms and bedridden to just fatigue left. I like to learn from all others. Sharing helps eachother.

I have CCSVI now from years of chronic infections.
My veins between brain and heart are blocked and i saw the test live. It's all I have left to treat and it's very difficult.

Don't stop trying to find the items in your body causing the symptoms.
Too many conditions are just named but no causes give and treated by treating symptom not the cause.

I have gotten rid of severe severe pain and being on heavy narcotics by treating and detoxing my body that built up toxins from these infections that took over.

I suggest you just get the testing and rule out what you can and start finding doctors willing to help you figure out the cause of the symptoms.
Otherwise us patients are stuck in spiral of treating symptoms.
I have been there. Never thought my pain would ever go away. Thought I was stuck that way. Had that pain for over 10 years !
FMS ? Yes ! But why ? Infectious basis was my answer.

I had two pages of symptoms of so many kinds of skin digestion sleep liver heart brain nerve muscles and too long to list what they all were. At least 50 ! All remedied.

Fatigue is what's left. Trying to learn what I can and if I've missed a viral infection or cause or if it's my blocked veins or what.

Ya see there are causes. As patients we have to push to get help finding them.

Hope you do so you can start getting your symptoms to resolve.

LoveTheLight
Regular Member


Date Joined Apr 2014
Total Posts : 112
   Posted 6/19/2014 7:26 PM (GMT -7)   
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 ?

LoveTheLight
Regular Member


Date Joined Apr 2014
Total Posts : 112
   Posted 6/19/2014 7:31 PM (GMT -7)   
I would direct you to
Fry Labs in Arizona for testing of also many
Vector Borne illnesses.

You don't always have to get things from ticks but mosquitos also and such.
I have Protomyxzoa rheumatica and treating that had been a huge part of my recovery. But I also was positive for about 12 total infections of various kinds that I had. Some new and some reactivated like EBV.

Finding a doctor to guide you through testing to find what might be causing the problems is important. Many Lyme doctors . Good ones will run a slew of tests based on history and symptoms.

Telliott
New Member


Date Joined Jul 2014
Total Posts : 11
   Posted 7/22/2014 2:56 PM (GMT -7)   
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

BDJ808
New Member


Date Joined Jun 2014
Total Posts : 16
   Posted 7/22/2014 10:36 PM (GMT -7)   
I just got my igenex results the other week. Tested positive for lyme and babesia co-infection. My cd-57 was very low (17) which also indicates lyme. Am starting treatment with heavy doses of antibiotics and malaria medication for the babesia. Still not sure wether or not igenex is reliable as it seems like everyone gets a positive. How does everyone else feel.aboit igenex testing?

Louise74
Veteran Member


Date Joined Mar 2014
Total Posts : 1035
   Posted 7/23/2014 4:21 PM (GMT -7)   
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.

Mangaka
Regular Member


Date Joined Mar 2014
Total Posts : 52
   Posted 7/24/2014 11:13 AM (GMT -7)   
Hi BDJ808,
I have had a lot of similar symptoms to you. I have recently tested Igenex positive for Lyme disease. I also have severe gut dysbiosis and mold exposure. Perhaps these are things you could look into?
Even if you test negative for Lyme disease, you could still have another infection-- or the test result could be wrong, and you might have Lyme disease anyway. It might be helpful for you to go to a Lyme-literate doctor to explore these options.
Mangaka
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