Well maybe it's Lyme.......

[jarla]

Hello Friends,

I am so glad I found you. I have been spending a lot of time recently trying to learn as much as I can about Lyme and how to treat it. Seriously, it's like searching for gold in a trash heap.

I am sick with "something" and it's still uncertain what that is, but Lyme feels like the best bet for right now, and so my doctor is treating it as such.

I am now 27. I have been sick since at least the age of 14, and probably since age 10 or 11. My health has been on a gradual downhill slide for most of my life, with steep hills here and there. I've developed ADD-like symptoms, constant swollen glands, sore throat, achiness, fatigue, etc. The last 10 months have been particularly bad.

In the Fall, I discovered that I am intolerant to several foods: wheat, corn, tomatoes, potatoes. I'm not sure how long that's been the case. A recent genetic test showed that I don't have true Celiac, however.

In late November, I came down with a case of bronchitis that has yet to go away. I am being treated now as though I have asthma, but I've never really had any asthma problems before, never even had bronchitis before. Plus my pulmonary function test did not reveal asthma.... But some doctors are confident that it isn't an infection.

In February, one doctor insisted that I had had enough antibiotic treatment for the cough, so I must be suffering from post-infection reactive airway disease. He put me on prednisone. I felt like I was in heaven for those two weeks; I couldn't remember feeling so healthy before. But when I stopped the treatment (tapering down properly) all hell broke loose.

The cough came back. I developed joint pain and swelling, which I'd never had before. One flare was so bad that I could hardly stand for two weeks. I started noticing blood in my stool (though that started before the prednisone). I realized that I had a malar rash after reading about Lupus and realizing that was even significant.

I saw a Rheumatologist... of course my knees weren't swelling that day. He diagnosed me with fibromyalgia, his specialty.

Then my eyes started having problems. The left eye flared quite badly and my husband and I rushed to the eye doctor to find out that I had anterior uveitis. The eye doctor insists that something besides fibromyalgia is going on.


But that something is still a mystery. None of the extensive testing I've done so far has revealed anything... nothing autoimmune, not Lyme. I have a colonoscopy in a couple days, so maybe that will show something.

I now live in Chicago. I've suggested Lyme to several doctors and they have pretty much dismissed it. The doctors around here are pretty ignorant about it. However, I grew up in the woods outside of NYC. I was bitten by deer ticks. So right now Lyme feels like the best explanation.

But my medical history is a bit unusual.... I've had a bad case of mono (Epstein-Barre, yay). I had the Lyme vaccine in high school before anyone knew better. I have had several extra vaccines that aren't as common: typhoid, rabies, meningitis, and Hep A and B. I lived in India for a year and God only knows what I picked up there. I had a bad reaction to mefloquine (the malaria drug lariam) while I was there and I know that can cause permanent damage. I suspect that the bronchitis was caused by one of the walking pneumonias, like mycoplasma, because everyone was getting bad chest infections this winter. And blood tests did reveal that I was exposed to parvovirus at some point.

And, oh, I'm apparently TB positive. My chest x-rays and a sputum sample have been fine. But it's really hard to tell if it's truly latent or not when I'm so sick.

So who knows what kind of little tango all these factors have been doing in my body.

Thanks for reading!

Peace,
Jill

[enochroot]

Wow! Welcome aboard - I hope you find some answers here...
I too suspect Lyme(for my mess) but have other things to consider
like the HEP B vaccine, or something as of yet unknown. I get
where you are coming from post you questions and you progress~!

[cobweb2]

Jarla-"In the Fall, I discovered that I am intolerant to several foods: wheat, corn, tomatoes, potatoes. I'm not sure how long that's been the case. A recent genetic test showed that I don't have true Celiac, however."

It was determined through blood samples that my daughter has "Leaky Gut Syndrome" with many of the same+ intolerances as you have.

She is now gluten free with other restrictions. And taking L-Glutamine plus probitotics to help heal her gut. For a teenager she is amazingly good natured about eating rice cakes with almond butter when her friends are chowing down on pizza.

It helps that we have been able to establish a gluten free home, she can pretty much snack on whatever is on hand.

As for my experience with a colonoscopy-I was falsly accused of laxative abuse because of "staining" in my colon. However biopsy proved the doctor wrong. He was a jerk. The only laxatives I'd taken were the ones he prescribed for the pre cleansing before the procedure.

He never did come up with a reason for the staining. But then again-I haven't gone back since he was such an arrogant SOB.

I count myself as extremely fortunate to have positive tests for Lyme-it makes the whole wretched business easier to deal with.

Best of luck to you,
Cobby

[nyxie63]

Hey Jarla! Nice to see you here! It's Curiouser from over at the spoonie board.

Just wanted to say "Hi!"

[jarla]

Thank you for the welcome!

May 4, 2008 4:20:53 GMT -8 nyxie63 said:

Hey Jarla! Nice to see you here! It's Curiouser from over at the spoonie board.

Just wanted to say "Hi!"

LOL!!! Great minds think alike, eh?

[LymeEnigma]

Welcome, Jarla!

I also suffer from lung problems, every once in a while going in for more antibiotics. My lungs only clear up partially, however, and I now use an inhaler on a regular basis. I think many of these illnesses are capable of causing not only persistent infection, but some serious damage along the way.

I also get the "lupus rash." I tested low-positive and speckled on my first ANA titer, but negative a year later. My C3 and C4 compliments were also both low, but those tests alone, luckily, were not enough to merit a lupus diagnosis. God knows where I'd be today if I had gone on steroids....

I also developed rheumatological problems very young, finally diagnosed with "fibromyalgia" in my late teens. I don't believe "fibromyalgia" is an adequate diagnosis on its own, although I do believe that Lyme is not its only possible trigger. I believe that there are a number of Borrelia-based diseases, as well as numerous Lyme-like illnesses that can be just as difficult, if not even harder, to treat. I also think that current research is moving in a good direction, putting the puzzle together, one tiny piece at a time. In the meantime, maybe we can figure out a few of the pieces for ourselves.