I need a second opinion from you guys before I see my Dr.! I never considered Lyme - been sick 10y.

I posted this on a few forums because I need some additional information before I see my general practitioner Tuesday, since he's the only Dr. I have that gives a ****. The rest just threw a diagnosis at me and gave me some medications and really didn't care; didn't help that all the chronic disease Drs. in the area are completely swamped.

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I just got my bloodwork back today and it's the same as always. Everything indicates that I'm perfectly healthy, although I'm not. I "supposedly" have Celiac disease and Sjogren's but I was diagnosed on symptoms alone and I've never had a single positive antibody blood test for either Sjogren's or Celiac, a positive biopsy for either, or any lab indicating that I have an autoimmune disease.

Here's my blood work today.

SS-A IGG was <1 while <20 is normal.
SS-B IGG was 1 while <20 is normal.
Antinuclear antibodies ANA were negative.
CRP inflammation was 0.7 while <5 is normal.
Endomysial IGG was <1:10 while that's normal as well.

Supposedly I have three different autoimmune diseases, but the problem is around here the chronic disease doctors are so swamped that my case hasn't really received that much attention. My primary care physician is open minded and a great doctor but he's so out of his league so my options are this point are Mayo or finding enough information to help him get the testing he needs to get done.

I did have one abnormal test. My testosterone was 211 when it should be 600+.
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Here is what I know. I have HPTA or pituitary dysfunction - something is causing my testosterone and cortisol levels to drop.
I have dry mouth, dry skin on my face that seems to either feel like it's burnt or turn into a rash when I'm stressed.
I also have had slight vision loss, heavy cognitive impairment, food sensitivities to just about every protein - especially gluten ( I ABSOLUTELY react to the stuff BIG TIME! but I don't know if I have Celiac because I've never had a biopsy done ) milk fish and nuts.
I'm developing neuropathy and a twitch in one of the muscles near my nose on my face. I also have anhidrosis that Evoxac helps that seems to get my moisture glands all working again - like my sympathetic nervous system has been hijacked. I have normal tear/saliva production at times, almost like my glands aren't damaged. I have rashes ALL over and I've had them biopsied and both times they were negative for DH. Doc said he didn't know what they were but suggested folliculitis. I have chronic prostatitis that GREATLY responds to antibiotics but never seems to disappear. I have anxiety, tinnitus, slight joint pain, and have recently developed really bad asthma/difficulty breathing/wheezing. My nasal passages are also dry, as well as my hair getting dry and brittle and sometimes I even lose a small amount of it like it's unhealthy (Evoxac causes my hair oil glands to start working again - again dysfunction of my sympathetic nervous system). I have all of the fatigue symptoms that I'd expect from my HPTA-axis being fubar'ed. I have hot flashes when I'm stressed, I have difficulty waking and getting up. I have seemed to develop a ton of new allergies recently and constantly have a dry stuffy nose (Evoxac fixes this too).

Initially thought to be prostatitis, sjogren's, and celiac disease. The question is why the prostatitis responds so well to antibiotics, but always seems to come back when I stop therapy. Why have I never had a single positive autoantibody blood test for any autoimmune disease?

I'm thinking maybe it's Lyme after all. In the eight grade, we went to an outdoor retreat to a wooded area for about three days. Our graduation followed two weeks later and I distinctly remember begging my mom to let me stay home because I felt horrible, almost like I had the flu. I recovered slightly but was sent to a summer school program for gifted children and I developed scabs/rashes/swollen hands over the course of about a month or so... and my mom saw me and rushed me to the hospital and they gave me antibiotics for what they thought was a staph infection. It all cleared up.

Over the course of the next three years, I noticed a distinct drop in energy and cognitive levels. I went from scoring a 32 on my ACT in middle school to feeling "dumb" just a few years later. It was exactly three years later that all of these symptoms popped up. But they seem to slowly develop... the prostatitis came 2 years after the sjogren's like symptoms. The neuropathy is a recent development in the last two years. It's almost like it's progressing slowly.

I'm lost right here and I need some opinions because when I see my general practitioner I need ideas for what to test. I have no experience with Lyme disease or never even considered that I may have an infectious disease. Something has really, really messed me up and I'm not exactly in the target demographic for being strafed with so many health problems that all seemed to appear even though I was a very healthy child.

I mean I know Sjogren's can have negative blood test. But always testing negative over eight years?

Sjogren's doesn't usually cause this does it?

http://imageshack.us/photo/my-images/594/img1419go.jpg/
http://imageshack.us/photo/my-images/29/img1420jk.jpg/
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This crap is all over my body.

I'm on a course of antibiotics and I swear I developed a rash on my arm that looked like a bite mark except with a bunch of different small red dots. I saw it under certain light and it was very faint and it's completely gone now. (since my last dose) If it pops up again I'm going to take another picture of it because I haven't seen anything like it.

This is what it looks like but so faint I could only see it under certain light. It looked like a jaw imprint but it wasn't a solid color only made up of a bunch of small pink dots.
http://imageshack.us/photo/my-images/225/save1x.png/

I've been sick since I was 14-17, I don't really know what it's like to live as a healthy adult. I really want to get a handle on this and just know for sure what I have so I can get properly treated... Sad Obviously I'm going to get tested for Lyme asap but assuming it's negative could this be anything else? Does this seem like what you guys experience with your disease?

I do. I know of Dr. F in Louisiana but I need to see someone sooner rather than later and a 6 month waiting list, supposedly, is not something I'm looking forward to.

I'd be willing to travel within 10 hours by car to see someone so Texas, Arkansas, Mississippi, Alabama, northern Florida, etc.

 

Christopher,

I was poking around on the allergy forum, and I found a long string on hives you might want to read called, "I might be able to help with hives" or something like that.  I'm not advocating jumping into the remedies mentioned, but rather finding the cause of the hives.  Hormones and yeasts were mentioned, among other things.  In my opinion, you should figure out the source before trying remedies.

Best wishes! 

This might be no help at all....but a few years ago (before my Lyme diagnosis)  I twice got rashes much like you describe.

The first rash-- itchy, little red bumps all over me-- I believe were chigger bites.  I think I got into a nest somehow, while walking through dune grass at the beach.   I actually found some of the buggers on one of my dogs who was itchy and bumpy as well.  

If you are outdoors a lot and live in an area where there are chiggers....maybe that was the cause?  

My second rash-- again little red bumps that were itchy-- I think was caused by a clothing allergy.  I got caught in a bad rainstorm and the dress I was wearing got completely soaked.   Immediately I broke out in this wild rash---took days to go away.  Something in the dress must have been activated by getting wet.   

Just some 'maybe' thoughts for the rashes you have.  

 

Hi Christopher - your symptoms do sound like Lyme. Especially with that experience in the woods with the flu afterward - that's a typical Lyme start. And you noticed that your symptoms went down with antibiotics - bingo. There's a Search function at the top of the page and you can type in any word or phrase to read the archived threads on any topic - ie, you can type in all your symptoms and see what people have written about them. A great test lab is www.IGeneX.com - they can send you a free test kit. #188 and #189 for IgM and IgG Western blot antibody tests. But also see [url]www.canlyme.com/seronegreasons.html [url] for 27 reasons why people don't test positive even when they may have the illness. So it's a clinical illness, dx'd also by history and symptoms. Btw, Mayo will not dx Lyme.

Post Edited By Moderator (Traveler) : 7/3/2011 11:37:56 AM (GMT-6)