Just wondering (have not been diagnosed yet) had a complete blood work up on Fri including a titer for Lyme which was normal. Was looking at my results and had a few questions. My TSH was normal, and my T4 was only normal at .60 (reference of .58), is this something I should watch to see if it comes down even more. My B12 was also checked and it was on the low end of normal, should I keep an eye on this as well. Also, would the infection show up in any regards in a CBC or metabolic panel (which were all normal in my case).
Posted by lou (Member # 81) on :
Lyme titer test not much good. You should be testing with a lab specializing in tickborne diseases, and skip the ELISA (the titer test).
A number of lymies are hypothyroid, also may be short on Mg and B vitamins. Wouldn't hurt to start taking some supplements while you are searching for a diagnosis, assuming you have good reasons to be considering lyme. Neither of those will hurt you with normal doses, especially since Mg deficiency is common in normal population.
Posted by ibrakeforticks (Member # 6785) on :
This is the problem--it doesn't show up on a CBC panel. If you have Lyme, all the typical bloodwork can show up in normal ranges. This is maddening, because you can feel like you're dying and the doctor tells you you're the picture of health. You must be searching for a reason; what are your symptoms?
Suggestions: Find an LLMD and test for Lyme with a Western Blot. Typical doctors are clueless about this disease. Start taking a sublingual Methyl B12 supplement. Read more info on B12 deficiency and the fun that awaits you at www.braintalk.org on the Peripheral Neuropathy forum. Lots of B12 experts there. Whatever symptoms you have could simply be due to B12 deficiency.
Posted by Lymetoo (Member # 743) on :
I agree with every single thing "brakeforticks" said.
Posted by ABar95 (Member # 8415) on :
Thanks guys. I am right now on the doctor merry-go-round. Have seen my PCP now four times, been to the neurosurgeon (had a myelogram and MRIs), now have appointments with the neurologist and rheumatologist. My list of symptoms is very lengthy. I am an otherwise extremely healthy and active 32 year old. Had severe shoulder, neck, upper back pain this summer. Went through PT, not too much relief (shoulder is back to hurting), developed an atypical rash that spread around my abdomen in September, then a week later was so sick with severe neck pain, photophobia and flu-like symtpoms. My doc said muscle spasms and sent me on my way. Since then I have just never felt right. Extreme fatigue, cannot concentrate, pain that moves throughout my body (right now it is my elbows and wrists), short of breath and chest pain, neurologist symptoms including tingling and numbness in hands and fingers, significant pain behind my right ear, ringing in right ear, ect.... Anyways they can't seem to find anything and as I started reading I came across Lyme Disease. The symptoms make a ton of sense to me and when I started thinking about it I had been riding my horse in a very tick infested field over the past year. I convinced them to run a Lyme check, of course it was just a titer and came back negative. Anyways, I am very frustrated at my symptoms and am searching for answers. When I looked at the bloodwork results even though they are technically normal I was a little interested in the T4 and B12 results considering these can possibly be low with Lyme. I am still searching for answers and am now on a waiting list to see a Lyme doc.
Posted by Troup Brazelton (Member # 6297) on :
If I were you, I would print out the Dr. B information and get back into the doctor's office that agreed to give you the first test, show him why it may not have come up positive(you might want to look at the results yourself and share them with this board as the doc may be using CDC standards which are bogus)and get him to start you on abx untill you can see a LLMD. Time is critical for some people. Remember, the dx of lyme is clinical and you have a lot of the clinical signs of lyme plus you have an exposure possibility.
Posted by cantgiveupyet (Member # 8165) on :
Please get off the merry go round right now and get to an LLMD. I waited believed the ducks...went to 3 nurorsurgeons, neurologist, endocrinlogist, PCP 10 times...ER ducks 12 of them...if i had stuck with my gut since day one well maybe i would be better by now, i would have caught this earlier..... im very sick right now...and because i chased my neck injury for months...lost valuable time.
Please even if you just have 5 symptoms on the lyme symptom list go to an LLMD....it can quickly progress......i went from 5 symptoms........to 35 in a months time. Trust yourself, you know something is wrong.
Guess what I met with my PCP on Wed...he says so LLMD thinks this is causing all your symptoms...i say yep. he is like well you must have gotten bit after (as he is looking at the quest western blot) this....
He is now on board believing i have lyme as long as LLMD thinks that i do. I could see his wheels spinning in his head...thinking ok this girl is nutz then thinking, but here are her test results.
He wrote lyme disease on my chart. Posted by ABar95 (Member # 8415) on :
Thanks guys, I am having such a hard time with this whole thing, it is so frustrating that we have to tell our doctors no this is what I think I have. I actually have a call into them to see if I can convince them to at least give the antibiotics a try. One question though: If I take antibiotics and then do the Western Blot with the LLMD will the results be changed because of the antibiotics?
I think everyone thinks I am nuts for thinking this, including my family! When I went through the symptom checklist I checked off over 25 of them!
Posted by Michelle M (Member # 7200) on :
Hi ABar.
The results will definitely be changed because of the antibiotics.
When I was in your shoes (some 7 months ago or so!), I did this:
I called up IGeneX.
I talked to Dr. Nick Harris there.
He said: "Don't take any antibiotics yet. Hold off a bit longer. I will send you the IgM and IgG test kits."
He did, right away. I got my doc to sign off on the sheet.
Your local lab will draw your blood. Do it on a Monday. Hand 'em the packaging IGeneX sent you, then drive it to your local FedEx drop off place.
Voila! It's that easy.
Then you can get on antibiotics. Because once you're ON antibiotics, you actually need to be off for a couple of weeks to get a proper test result.
It's crucial to get the best testing possible, which you haven't had.
I'm betting THIS test result will be vastly different than any you've had before. Have the results faxed to your doc.
Go to www.igenex.com -- call them up and ask them to mail you what you need. You prepay with your credit card when you sent in the test; your insurance will likely reimburse at least part of it.
We wish you the best. Please do it!
Michelle
Posted by vachick (Member # 8353) on :
I have a question. Did any of you do the Lyme Dot Blot Assay Urine test? I did that one, and I actually had to take the abx to "tease out" the spirochettes (that is how the doc explained it). I started taking abx and collected urine samples on day 3, 4, and 6. Then I mailed it to Igenex. Anyone do that one??? In that case, the instructions said that I had to take abx. Anyone know if that sounds right?
Posted by Troup Brazelton (Member # 6297) on :
LLMD did the same here in Alabama, Vachick.
Posted by ticked in ri (Member # 7736) on :
yes. We did that same test on my daughter through Igenex. My doctor seems to like the LDA test. Did your's come out positive? My daughter's was negative. I only had her tested because I have lyme and I didn't know how long I had it. Thought maybe I had it when I was pregnant but didn't know it.
Posted by Michelle M (Member # 7200) on :
That test is very good if you have an indeterminate or negative Western Blot. However, insurance companies and others don't hold it in the same regard as a western blot (even though they should). That is why if you haven't been on antibiotics YET, I would try a western blot through IgeneX at this point. If I understand it correctly, you would only do a dot-blot Assay if the western blot is negative or indeterminate.
Michelle
Posted by vachick (Member # 8353) on :
Hmmmm....interesting. My doc actually took my blood for the IgM and IgG in the office and sent it off to IGenex BEFORE I had antibiotics. He then gave me the Dot Blot Assay test to do at home when I started the abx. I had sent off my urine for the Dot Blot on the same day that I received the IgM and IgG results. My IgM was Positive and IgG was Negative (missed positive by one band). I don't have my Dot Blot results yet... I guess he was doing all of the tests at once! I have heard that Dot Blot is not as reliable of an indicator though. True?
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