Darwayne said...
Thank you Sebreg and Bluelyme for the input and advice, duly noted! I like the sound of the provocation method Sebreg, will definitely do some reading on that.
Acarined - I must say I am impressed by your ability to summarize such a stretched up post lol! Seriously, good take-aways from it and thank you for spending your time reading it. I know, I don't have many common symptoms although I may have years ago. If I want to take it way way back to 10-11 years old, I had a case of extremely swollen and tender lymph nodes in my left chin. They thought it could be cancer but had me checked for mono first. Tested negative for mono (EBV I think?), then right before the biopsy for cancer, my dad heard of another kid that had a lymph biopsy and his face never looked the same. He wanted 1 more blood test and I came up positive for mono. Then, like 2 years later I started getting light sensitivity, random blurring and eyes not focusing perfectly sometimes. I also started getting some serious headaches, suddenly had an HGH deficiency and stopped growing at 4'11 (needed HGH injections there-after). This all started between age 12-14, more so at 13. I also started randomly getting these weird episodes of feeling like I' in a dream state, super out of it. Was really strange and hard to soak in as a 13 year old who had had virtually no mental/cognitive issues before. Also had low testosterone all through puberty (in 200's). T was sitting at 320-400 the last couple years and only recently have I started HCG injections which have me producing 750+ T. When all this started, I saw tons of doctors complaining of the dream like episodes and light sensitivity. As you can assume, I went through a million tests including 5 day EEG, MRI, MRA, SPEC, neuro evals, tons of blood work, vestibular rehabilitation(LOL, 1 bad doc in the bunch). Anyways, the huge cognitive decline didn't happen until I was 17. I wasn't really getting any of these symptoms anymore besides some light sensitivity. Long story short, I know Lyme can have a very different effect on different people and with my history, I think it might be worth testing since nothing has come up on any other tests.
As of recent, all I've seen is a neurologist. He did MRI on brain w/o contrast, MRI on pituitary w&w/o contrast, an EEG which I have yet to get, and my primary did some blood work. I have an appt with a neuropsychologist its just a long wait list for the good ones. Otherwise, nada. PS my thyroid is said to be normal by 2 endocrinologists and my primary so I think it's fine. When I thought my thyroid was funky, it was because I had completely forgotten I had a protein binding deficiency discovered when I was 14ish. You have to test me for T4 and T3 "FREE" or I show up low. Basically I have no TBG (thyroid binding globulin). I had my primary test this to confirm it; it's not a problem though. Wish it was so I had an answer! Like I said, the main reason I want to test for Lyme is because doctors have ruled out just about everything else and only recently have I seen how common Lyme is as well as how much it effects cognitive ability.
Girlie - Thank you Girlie for the great advice! I will search through all my old blood work and see. I'm willing to throw some money at it if I have to but definitely think the budget approach sounds like a good start. As you can imagine, anyone new to the topic is a little lost as it's so vast; it's nice to feel confident with a plan of approach. Thank you for that! I guess I'll keep *finding an LLMD* as my first step. I sent a request to ILADS.org for docs on Friday so I'm waiting on that. Will make a post here too, thanks!
Lets say I do do this $250 test and it comes back negative, should I try more or trust the test?
Also, you think I should call LLMD's and see who reads the DNA test or is that irrelevant?
When my government (useless) Elisa test came back negative - I then tested with the Igenex WB.
That was all I needed to get treatment with a LLND and now a LLMD clinic.
Two years later I tested for some coinfections with a lab not known in the Lyme world - because it was inexpensive and I was curious by that time what coinfections might show up.
I tested positive for Bartonella. At this point it has not changed my treatment path BUT I have to admit I like knowing that I do indeed have it and my hunch or educated guess has been correct.
But to start I think the $250 WB at Igenex is a good start.
Some llmd’s may want more testing (mine doesn’t so far) but they will tell you which tests.
If it comes back negative - there still may be some indications on the test results that will back up a clinical diagnosis (symptoms/history..) - positive Lyme “specific “ bands .
That’s why I asked about
your previous test - what were the actual results.
You can get the test done while you’re waiting for your LLMD appt...take your results with you...
Do you have a Dr who would be willing to sign the lab req?
You can call Igenex and order the test kit.
Or if you prefer - you can go to a LLMD first