Lyme symptoms and testing? MRI changes?

[Maggi315]

Hi, I posted on another board, but thought I'd come to this one, to get some advice about my lyme testing. I had an MRI 3 weeks ago after a sleep study showed I was waking up 116 times in 6 hours with no apnea or anything. I have a history of: Hashimotos thyroiditis, fibromyalgia, chronic migraines, and restless legs (which I take requip for and it works well, although makes me terribly nauseous).

The MRI showed a 3 mm growth of some kind on the pituitary, which my neuro said is probably a pituitary adenoma, I had lots of blood work, all normal so far. The rest of the pituitary looked normal.

I also had "white matter disease, unspecified" with "flair signal changes" in several areas and a 7mm area of "ovoid foci" which they said was possibly an "arachoid granulation". So my neuro did tests for lupus, lyme, infection, sed rate, etc. but all look normal. She said since I'm not having symptoms of MS or parkinsons, she thought it was probably due to my chronic migraines.

I'm wondering what other kind of tumors or growth could be on my pituitary and how worried I should be. Does a malignant growth look different on an MRI?

Any advice would be great. I am an RN, so I have medical knowledge, but a little can be dangerous!

My lyme test was probably elisa, I'll have to check, but my titer was .17 which was well below what they consider to be positive. I have many, many symptoms of lyme, but here are my questions:
-how much is it to run the test through Igenex? I can get my friend to run them for me, but will probably have to pay out of pocket?
-wouldn't my white blood cells, sed rate, etc. be high? Mine are all normal?
-anyone else have changes on an MRI? Anyone have links that talk about the specific changes that can be seen?
-any good lyme specialists in PA area? near harrisburg, philly, dc?
-if I am diagnosed, what kind of treatments are there? One doctor who thought I might have lyme about 5 years ago, put me on 3 months worth of antibiotics, which really did nothing, then tried some steroids. What other treatments are there? I am guessing if I am positive, I must have had this for at least 10 years, probably more.

thanks!

[Sonsie]

Lyme disease masquerades as all sort of other illnesses, so who knows what you have. :confused: You do have enough to suspect Lyme at this point. See http://www.ilads.org for valid information about Lyme disease. Their links page shows other sites that have accurate details.

my neuro said is probably a pituitary adenoma
Gotta love those "probably" diagnoses. :p :rolleyes: See the best endocrinologist you can find, preferably one who loves and is challenged by pituitary issues.

wouldn't my white blood cells, sed rate, etc. be high? Mine are all normal?
Don't mean a thing. Mine are normal too. Most doctors are clueless about tick-borne illnesses and how to diagnose and treat them. MRIs aren't useful for Lyme disease. SPECT scans are. Elisa tests are wildly inaccurate, and in women even more so.

Do you happen to recall a tick bite? Ever had a bulls eye rash? (Be aware that 70% of bites do not result in a bulls eye rash, so absence means nothing.)

how much is it to run the test through Igenex? I can get my friend to run them for me, but will probably have to pay out of pocket?
ID which tests you want and call them for prices (remembering to factor in the blood draw costs and the FedEx shipment). Expect $200 at least, if my memory is correct. They take credit cards. You can file with insurance after the fact, if you are able.

any good lyme specialists in PA area? near harrisburg, philly, dc?
Your best bet for finding a LLMD is to hook up with a support group. Doctors who treat Lyme correctly are routinely harrassed, sued, strung out to dry by medical boards, whatever -- each year several of them go out of business -- so you likely cannot get a referral until someone knows you and trusts you. Here is where to find support groups: http://www.lymenet.org/SupportGroups/UnitedStates/ We do not mention doctors by name, location, gender, etc. here because we don't want to lose what little care is available. Other Lyme boards do the same.

if I am diagnosed, what kind of treatments are there? One doctor who thought I might have lyme about 5 years ago, put me on 3 months worth of antibiotics, which really did nothing, then tried some steroids.
Read the ILADS information, especially the Treatment Guidelines. No cookie cutter treatments exist, due to the myriad (100s) of strains kicking around, not to mention that the combinations (from being bitten in different geographical areas) present endless possibilities. And the co-infections complicate everything.

Short-term antibiotics make us worse (you might be living proof of that). Steroids also make us worse. Sadly, the doctor you saw had no idea what he was doing. :( My opinion is this: No treatment is better than the wrong treatment.

Diagnosis is not via testing, though test results can provide very meaningful information to an LLMD who understands them. Diagnosis is clinical (based on your symptoms). And, of course, you need to rule out presence of other illnesses too. You are well on the way to doing that.

Good luck, and feel free to ask us any other questions you have. :)

[Maggi315]

Thanks for all the info. The MRI wasn't done looking for lyme, but rather the cause of my headaches. It found a small pituitary tumor (so far only hormone high is ACTH and only slightly), and "white matter disease".

I read through the sites and do have lots of symptoms, but they could also be so many other things. So far, I have heard that food allergies, additives, sulphites, msg, salciyates, chiari, fibromyalgia, epstein barr, gluten intolerance/celiac, and a few other things could be causing my symptoms. Most of my tests are negative, but then i have heard that most of the tests can be inaccurate, so it's so frustrating!!!!

Any other info would be great!

[Sonsie]

If I were you, I'd forget FMS. Everyone I know (including myself) who was ever given this diagnosis realized after they subsequently started treatment for LD, that it's a bogus syndrome -- ID'd simply because doctors, however well-meaning, are clueless about tick-borne diseases. Meanwhile, we all went deeper into chronic LD because we were mislead. :mad:

Go ahead and systematically rule out other conditions, keeping in mind that evidence that MS and ALS are likely late-stage LD exists.

I realized that you didn't have the MRI because anyone was looking for LD. I just thought it would help you to know that you can't rely on it to rule out/in LD. Sorry I wasn't clearer! :o