Avatar universal

I know I have IBS but I have other undiagnosed symptoms...

This all started back in July of last year when I returned from a study abroad trip.  Doctors believe this has no relation with whatever is going on, but I find it worth mentioning because the timing.  

Firstly, during the trip I had flu like symptoms (I was in bed a lot and achy/ coughy/ sore throat) and an eye infection occurred the following week.  I normally don't get sick so easily but I was prone to it this time.  I have no idea what these things came from but the only suspicious time was when I had water that tasted fishy, but that seemed irrelevant besides grossing me out.  I had rocephin shot when I returned to cure up what they thought was gonorrhea with the only sign being leakage though I had no unpretected sex (yes I know that doesn't always mean anything, but it did come back negative).  That cleared up then soon after the worst symptoms started coming almost systematically after the shot...

I tended to feel fatigued and had bowel movements that fluctuated from okay to water basically.  This was accompanied by pain varying in location in the digestive track and sore ribs or digestive area when I breathed in. Sometimes I would (and still sometimes) have shock pain throughout my insides in various locations.  After a few months of back and forth I was diagnosed with IBS after a endoscopy that had no results back. Also, I had a CT scan and the only thing found was an enlarged spleen and fatty liver (things they said had no effect on this).  

Then I started new symptoms that seem the worst yet.  I have fatigue and am light headed often, especially when standing up after sitting or reclining.  I also have arms or legs falling asleep occasionally.  I have bone pain all over that mainly hurts when touched and seems to radiate from joints often (besides my legs which sometimes hurt even when nothing is happening because they are walked on I assume, so often if I cross my legs the one I am resting it on hurts), especially at the ribcage (as it was earlier) and left knee where pain continues usually just sore to the touch (Sometimes when I breath in my ribs hurt around there).  This overall bone pain comes and goes, as do most symptoms.  I also have headaches that feel tense or brain fog that often seem centralized on the far left middle, if that makes sense.   Also I had muscle spasms at random times throughout my body.  Sometimes I have loss of balance.  These symptoms have been going on like 2 months now but aren't getting better nor worse.  There seems to be no consistency. This whole paragraph of stuff started right before I started my IBS medicine, Librax, which I am now on for the last week and seems to help with some stomach stuff.  I have always had shaky hands so I wonder if there is some nerve thing going on?  I have no idea.  

So I REALLY need some help and doctors seem to take forever though I have had a few vitamin tests and a thyroid test that came back okay.  Thank you so much to whoever reads this.  
2 Responses
Avatar universal
Sounds like Lyme Disease. Overseas they know it better as Borelliosis.  I have had many of the same symptoms that you are describing, and no, you're not crazy or a hypochondriac.  You're very ill.

I've heard other Lyme patients in TN say they have had a hard time finding a doctor who knows how to diagnose and treat Lyme.  You might need to check out your local Lyme support group to see what recommendations they can make about a doctor for you.  You'll need a Lyme Literate Medical Doctor (LLMD).   Pay cash if you have to.  Your life is worth it!   Many LLMDs have a substantial wait to get in for a consultation.  The sooner you find one, the better.  While you're waiting, you can get tested as that takes about a week.

If you acquired it overseas, you might have a different variation of Borellia than what we have here, which means you could be more likely to test negative according to the CDC criteria. Unfortunately, our medical establishment seems to believe that our tests are completely accurate, which they are not. I believe I got Borellia overseas, and I tested negative at a military hospital, but positive at IGeneX (they use two strains in the test instead of only 1).  I probably have b.garinii, whereas in the U.S., we only have b.burgorferi.)  The one shot of Rocephin you got probably made a dent in the initial infection, but not enough to kill it all.

If an Infectious Disease doctor diagnoses you with Lyme, s/he will likely tell you that you can be cured with 2-4 weeks (or maybe even 6!) of IV antibiotics, but in reality, you'll need a lot more than that.  Don't risk being sick forever with the so-called "Post Lyme Disease Treatment Syndrome".

You can learn more about Lyme at www.ILADS.org
Here is a document that was very useful for me.  It has a thorough symptom list.

Good luck!
Avatar universal
Oops, I misspelled the bacteria name.  In Europe, they have Borrelia Garinii, Borrelia Afzelii, and less commonly, Borrelia Burgdorferi.  Here in the U.S., so far, we only have Borrelia Burgdorferi.  In Eastern Europe and Asia, they also have Borrelia Valaisiana.  It is recently emerging in Australia where the government is still pretending it doesn't exist despite numerous patients who are sick and testing positive who have never left the country. As they haven't confirmed the disease in local ticks, nobody knows which version they have. I'm confident I got it in Queensland, Australia, and my symptoms are very consistent with most Borrelia Garinii symptoms described in Western Europe.
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