He is testing my thyroid again he is testing for lupus??? I have no idea why?? And he is doing a sed rate test as well as testing for lyme disease. My blood work will go to quest labs! I dont know what to expect all I do is worry about MS and ALS my anxiety stays high. I have no weakness etc, I just have the off feeling vision issues like ghost images and shakiness when I lift or squeeze things. I think my anxiety causes me to feel tired at times.
Can anyone give me their take???? Lost in Translation lol..I am on a med for my anxiety so you guys know the net is no good!!
This is your PCP who is testing your thyroid (again) and now for lupus?
The doc sounds like he wants to help but doesn't have Lyme on his radar screen as a possibility.
If you can't manage seeing a Lyme specialist currently, and if your current doc (who seems to be trying to help) is game, you could ask him to order the Western blot and ELISA tests (for Lyme). They aren't the state of the art -- IGeneX Labs has a PCR test that is superior in its structure (looks for direct evidence of Lyme bacteria instead of your immune system reaction to Lyme bacteria, which is what W.blot/ELISA do).
If the doc is truly game, then maybe he would order the IGeneX PCR test. None of those tests will look for other diseases the Lyme ticks also often carry, and the way to order those is for the doc to understand what the symptoms are for Lyme and for those diseases, to try to sort out what to test for.
(I went quickly through your earlier posts just now. Have you tried magnesium supplements? It can help the anxiety a great deal. Any variety ending in "-ate" -- magnesium malate, orotate, aspartate, etc., but apparently not the 'cal-mag' mix of calcium and magnesium, which I've seen comments on saying it's not very effective. Get a good brand of whatever it is you take; it can make a real difference in its effect.)
So, try to get your doc to go with the flow, since the good news is he might have an open mind to test for Lyme. Others will weigh in here shortly, I'm sure. Hang on!
Yes he is a good Dr he has been seeing me since last november! At first I was hung on what was wrong with me from the foot surgery I had and all the ansthesia they put in my body.. We shall see I just hope its nothing that will be deadly wrong with me..I am only 38 i still feel like I am young!!
Think about laying out a gameplan for the doc, since he seems cooperative.
What tests to order, what they are designed to prove, etc. If he's beholden to the insurance company or otherwise restrained somehow in what he can order, brainstorm with him on how to fit it into the insurance plan.
Ask him to look at ILADS's website, esp. Burrascano's treatment guidelines. It rambles a bit, but explains the thinking behind the approach. Your doc sounds willing, but without a road map.
before going to an LLMD the mainstream doctors I saw misdiagnosed me with MS and Lupus. The LLMD looked at those results and knowing that Lyme is the great imposter, knew those were false positives and sent my blood to igeneX where I got my proper diagnosis of Lyme with the co-infections of Bart's and Babs.
The big thing when they say that you have these other illnesses is to give you steroids which is not good for Lyme patients at all. I have long term Lyme disease and by the time I went to the docs my blood tests were all abnormal, hypothyroid, they said I had hoshimotos disease, my sed rate was very high, which indicated inflamation in my body. High WBC and high RBC. They said I had several other illnesses for which I said I should be written up in a medical journal for getting all these illnesses at once.
Jackie is right, without a roadmap to follow it is difficult for the mainstream docs to know how to proceed.
When I was in my early stages, I just couldn't read the net or read much of anything related to it. Don't be hard on yourself.
I think the best thing to do is (for now) just read ILADS and Burascano's guidelines then try to get to an LLMD to make sure you are on the right path. There are some LLMD that do phone consults if you can't find one close by.
These darn critters makes everything seem worse. Remember, we are here for you and you are not alone in this!
Ditto what mojo said. Anxiety is a feature of Lyme -- it's a biochemical reaction to the infection. It happens to many (if not most or even all) of us ... it's partly why docs tend to blow us off -- they think we're just ... anxious.
It's the bugz. Not kidding about the magnesium helping, tho. Try it.
Quest labs follows the CDC recommended two tier testing, which means if you aren't positive on the ELISA screening test, they won't even run the Western BLot. If they do run the WB, they only show the bands in the CDC surveillance criteria.
People sick a year or more are more likely to test CDC negative. The CDc developed the test interpretation using patients newly sick with Lyme, and antibody results are known to change over time.
Also, most big volume labs use a mass produced Lyme test kit that uses a single strain, B31 - The Shelter Island strain. Some Lyme advocates have said they believe that different genetic strains can result in different combinations of antibodies, resulting in false negatives, even when there are Lyme specific antibodies.
It seems to me that there are more people out there with primarily neurologic symptoms who test false negative, but that is just my perception based on who ends up on message boards searching for answers.
So, the point of my long comment here is to warn you there is a good chance of false negatives on your Lyme tests I also highly recommend you get tested at IGeneX. They have a better interpretation of the results and they do more advanced testing. They also report more relevant bands, which could show evidence of a Lyme infection even if you're not CDC positive.
What I did is order a test kit from IGeneX. Then, on my next appointment, I took the form in with me and asked my doctor to sign it. I said this was a special lab for tick borne diseases and I didn't care about insurance coverage and I was desperate. She hesitated only to say she thought my insurance should pay for it. (IGeneX doesn't take insurance. You have to send payment with the order & sample.) I said I didn't care and she signed it on the spot.
Later, my insurance reimbursed me about 2/3 of the costs because my primary authorized it. It was the best money I ever spent. I had previously tested false positive on both a blood test and a CSF antibody test. Because of those negatives, multiple doctors said I didn't have Lyme. I tested positive on my IgeneX Western Blot and was diagnosed by an LLMD.
I also tested positive for Bartonella. When it is present with Lyme, it usually makes for more neuro symptoms as well as GI symptoms. If you are having any digestive issues, google "Bell's Palsy of the Gut" for a great article explaining how these two diseases together can wreak havoc in your digestive system.
Here is the link to Burrascano's document. He also comments on Lyme + Bart.
Given that your symptoms are suggestive of ALS or MS, you will definitely want to get tested for Bartonella (b.henselae, also at IGeneX).
Anxiety is typical with Lyme and Bart. I had it, too, and it is much better with treatment. An encouraging component of the possibility of Lyme is that it is treatable and curable.
I think it is great that your doc was even willing to order Lyme tests.
I am not sure if you saw my post about financial grants to help young adults pay for igeneX labs and then once you get the diagnoses another foundation is available for paying the LLMD.
In addition, i believe Rico said that she requested the kits from igeneX directly. Then you can be reimbursed if you do have insurance.
Without those results many of us were told we were negative when we were indeed positive. The sooner you can get treatment the better off you will be.
It sounds like your doctor is trying to figure out what it is. They will repeat the same tests to see if anything change.
Oh, god..every specialist I went repeat the tests that previous specialist I went to. Even my "lite" LLMD repeats the same tests.
Anixety--which comes first--symptoms cause you to be anxious because you dont know what is going on, or is it the underlying condition(lyme, bart) cause change in biochemical, result in anixety. I dont know.
Right I have major anixety and I experience panic attacks more often recently. I feel my anxious has basis, I feel very nervous about the future, not that I feel anixous for no reason. In the past, it was out of nervous about what is really wrong with me. Yes, they tell me to stop using internet-"Dr. Google"--but it is what led me to suspect lyme.
I see your user photo--The Arrival, that's the movie, right? A scifi fan?
Alien impose as humans, it is same idea with lyme, lyme impose as one of many conditions.
With right condition-true face show itself. In the Arrival, alien's cover unravel when exposed to cold temperature. With lyme, it could be ABX challenge.
That may what have happened with me, I was on doxycycline, rx by dermatologist for dermatogical reason. Things start to show up on my lab work.
Ask your doctor for something to just to see if it can stir up your immune system, causing bands to show up on test.
Any bands reported on quest lab? Mine did, only one band after years show nothing. Of course lyme disease was dimissed. A few month later, stony brook lab--even more plus "nonspecific bands" (probably bands that was left out by CDC).
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