posted
Hello everyone. I wanted to post my story and get a few opinions as to what to do next, or if anyone has a story similar to mine (pretty much to verify that I am not going crazy).
Last June, I started feeling a little weird. I was nauseous all the time, nagging, but it got worse sometimes. I had smelly, soft , bulky stools, was losing weight, irritable, couldn't sleep (that has been going on for almost two years now.....trouble getting and staying asleep)
after being tested for everything under the sun digestively, I found an abnormally high antibody level in my blood work (gliadin IgA). Twe thought that I had Celiac disease.
I went gluten free and seemed to feel ok for about three weeks, then started becoming sensitive to other things, too. Milk products, some processed soy or corn, peanuts, almonds, the list keeps getting longer.
I go fine for a week or so, then the upset tummy and weird stool starts again. ( I alternate between that and being constipated) It all seems to get worse when i am stressed. And then last month.....
I was getting this weird "foggy" feeling, I described it to the dr. as "medicine head". Dr. did a complete blood panel and of course found nothing abnormal. normal kidney, liver, blood cell counts, thyroid, iron count..
he thought it was depression so put me on paxil....i have been on it 2x before (in college once and postpartum), but this time i reacted terribly to it (overdose type reaction....my pupils dilated and didn't respond to light, I was terribly nauseous, wanted to just sleep all the time, I was anxious and shaky....it was scary)
Obviously quit taking that, then he put me on an anti-anxiety med which the pharmacy gave me the generic form of which contained gluten.....so not only was i tired and sleepy and clumsy from the meds, i had been "glutened" to boot!
They finally put me on Ambien which forces me to sleep, but only if i don't get woken up at night by one of the kids. If my sleep is interrupted, I have the same issue of not being able to get back to sleep and if i do, i continue to wake up several times.
I ended up going to see a GI specialist in Chicago and they looked over all of my bloodwork and tests that had been run over the last few months and determined that I may not have celiac, but they don't know what I have going on. Originally, I tested really high for the gliadin IgA antibody which is not the best one to test for because it is the least specific.
rather than having me do a gluten challenge and possibly lose more weight, they drew blood for the genetic test to see if I am even predisposed to celiac. They said if that is negative, then something smacked my immune system hard enough to trick my body into producing the antibody.
Let's rewind.....back when I was a senior in high school, we were spending a lot of time with my ailing grandparents, going fishing and picnicing and such at a heavily wooded state park near their home (my grandmother had lyme twice in her lifetime). That summer, I came down with a really wierd flu, no respiratory issues, just a really high fever and aches and chills and I was hallucinating. I was tired for a good week or two after the fever broke. The strange part about it was that no one else in my family got sick (really weird since there were 7 of us in the same house.....for no one else to get sick is against the rules).
through college, I never got sick enough to go to the dr, although I did get prescribed antibiotics twice from my cat scratching me and it getting infected. I did have random headaches, sore throats, and just general fatigue, as well as some depression issues.
I had a fair amount of aches and pains during both pregnancies, but not enough that it was considered abnormal. Just all day sickness through both first and third trimesters, achy knees and hips and stiffness and changed vision and tiredness.
In chicago, they put me on a high fat diet to see how my system processed the additional fat. Well, in four days time, i didn't have any bm issues and gained four pounds....so it isn't a metabolism, breakdown, or malabsorption issue. grrrrrrrr.........
I also have achy knees A LOT and have this pain in my ankle that is there for a couple of days (hurts to walk or use stairs) and then it disappears. I often get terrible tension headaches and have a sensitivity to sound that comes and goes (i teach private violin lessons and some day s i want to tell my kids to play with mutes b/c i am so sensitive to the noise).
I have ordered a test kit from IGeneX, but am kind of nervous about asking my family dr. to authorize the blood draw. He was convinced all my problems were due to my lack of sleep, but after sleeping fine for 2 weeks, the problems are back and even the Ambien isn't doing the trick. i still wake up over and over at night.
Any advice or input is greatly appreciated....sorry this post is so long.
[ 15. February 2008, 08:03 AM: Message edited by: MommyStina ]
Posts: 3 | From Mishawaka,IN | Registered: Feb 2008
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posted
I don't recall a bite, just that nasty flu bug
I live in north central IN, my grandparents (both have past on in the last three years) lived a little southwest of here (maybe 30 min from the IN-MI state line, 1hr 15min east of Chicago, give or take).
You don't think my family dr could handle it or diagnose it? (no sarcasm or disrespect intended, just a question) The closest LLMD that I could find is just over 2 hrs away in grand rapids, MI (already did a search for that)
I am just a little torn....i am sick of being sick and need to be better for the sake of me and my family.
is it hard to get in to see a llmd? it always seems to take forever whenyou are trying to get in to see a specialist of any kind....
Posts: 3 | From Mishawaka,IN | Registered: Feb 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I feel lucky as I only drive 3.5 hours each way to see my LLMD.
Many here have to fly to theirs'.
Your GP can handle ordering the tests (188 and 189 Western Blot IgG and IgM),
However, due to possibility of Lyme and/or co-infections,
You really need to see a Doc that knows Tick Borne Diseases'.
You could go ahead and make an appt with the LLMD and have your Igenex results,
Which take about 2-3 weeks to come back to GP in hand to see LLMD.
Oh and Welcome to the board!
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Welcome to the board.
I would also get the test for Bartonella as you describe getting cat scratches.
My llmd is a 4 hour drive each way. It is worth the drive!
Good luck Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
I fly from Ohio to NY to see mine. If a GP could handle it, I wouldn't have to go so far. Two hours is close when you're talking about an LLMD. Mine has people come from all over the country and even as far away as Europe.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Do you have Gas -- Candida (yeast) can cause what you describe-
One of the early symptoms of Lyme can be Candida --
2 hours to see a good doc is worth the trip-
was a 4 hour bus ride for me --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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If a GP could handle it, I wouldn't have to go so far. Two hours is close when you're talking about an LLMD. Mine has people come from all over the country and even as far away as Europe.
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