Re: I saw the allergist/immunologist today and would like some input

[Guest guest]

Maurene,Lyme is a clinical diagnosis so doctors should have treated you based on symptoms alone.  However, the tests actually are more likely to be accurate when you are on antibiotics, because the antibiotics tend to stir up the lyme.  The most accurate lab is Igenex as they test for lyme associated with ticks found in specific geographic areas in the U.S. Some of the other labs are actually testing for a european strain of Lyme.  The thing about Lyme is that it never goes away - the abx can get kill off enough so that your immune system can keep it in check, but stress, other infections or toxin exposure can often make it active again.  Also, the abx that are typically prescribed are generally not high enough dosages to really be effective.  I learned that the hard way and went chronic despite the abx.   And, of course, anytime the Lyme is effective, it has the potential to trigger all the autoimmune reactions, which often remain even when the Lyme is under control.

Make sure and keep a log of all your mileage and expenses that are not covered - those are deductible on your taxes if they exceed 8% (or something like that) of your income.  The mileage reimbursement for medical purposes is 16.5 cents/mile - that includes doctors trips, trips for blood draws, etc. So, that can add up pretty quickly:

http://www.irs.gov/newsroom/article/0,,id=216048,00.htmlAlso, for folks that do have a celiac diagnosis, the difference between the cost of GF items and regular items is also deductible, as well as postage costs if you mailorder.   That can also add up in particular for the breads and snacks.  Generally, the difference for cereal is negligible because commercial cereals are way over priced.  Of course, make sure and check with an accountant (or review the materials yourself on the IRS website ).  If you want further info on the celiac taxes (including details of the IRS references), I can provide that on that yahoo group since it's really OT for this group.

B.

 

Thanks for the info.

 

I suspected the Thyroid test would be useless.  My TSH is always normal.  If LabCorp does not do the cascade of thyroid tests, I am wondering if it is even worth me having them done on my own.  Your input?  No matter what, I will have to put off a sonogram because I owe several hospitals for previous testing.  

 

I have never had a titer or antibody test for Lymes.  I was told from the get go the first time I picked a tick off of me and got the rash, aches, pains and low grade fevers that tests are useless if antibiotics are given immediately, which they were.  I went from doctor to doctor seeking help until I sent pictures to the Health Department who in turn gave me the name of a doctor who helped me.

 

After having my feet and ankles swell so bad, and getting those little bumps around my mouth, and more rashy looking stuff on my body (that turned out to be yeast) after my binge on Cream of White, toast and Ritz Crackers, I am pretty sure I have to be allergic or sensitive to gluten.  (Run on sentence.  :-) )

 

I have not picked up my prescription for floconazole as yet.  I had a bad experience with LabCorp yesterday and just needed to get home.  I left the doctor's office at 5pm in Houston traffic and had to drive 4 miles north along I10 to get to the lab.  I turned the wrong way off of I10 and had to call the lab to make sure I knew where to go.  I was about 1 or 2 minutes from them when I called, and I ended my conversation with the tech at about 5:25pm.  They close at 5:30pm.  She told me she had already closed down the computer and that when I called she was about to go out the door.  Since it was not 5:30 as yet, I asked her if she would wait for me BECAUSE the lab is a 4 hour round trip from my home.  She refused to wait.  I cried and got back on I10 to go home.

 

I have complained to a supervisor in Houston at LabCorp who apologized and said they take pride in customer service and the tech should have waited for me.  She said the supervisor from that location was call me.  That was first things thing morning and I have received no call.  I think LabCorp should pay for my mileage to go to the Richmond location, but this is not going to happen.

 

In a day or so I will drive to the LabCorp in Richmond because it is about 10 minutes closer and have them drain me of blood.  On the way home I will pick up my scripts in El Campo.

 

Is anyone here familiar with Hypogammaglobulinemia?  http://www.utoronto.ca/kids/Hypogam.htm  I am surprised, but not by much that my RA doctors have not explored my low IgAs and IgGs. 

 

Oh well . . . I have to wonder if any of these tests will matter in the long run.  I just started getting SSDI and my income in limited.  I guess I should just be grateful things are not even worse than they are.

 

Thanks for listening.

 

 

 

MaureneBencal Loft White Dove Releaseswww.BencalLoft.comRock Dove Ranch Sheep and French Lopswww.RockDoveRanch.com

 

" The greatness of a nation and its moral progress can be judged by the way its animals are treated. " - Mahatma Gandhi

Re: I saw the allergist/immunologist today and would like some input

 

Hi Maurene,There are a couple of other tests for celiac that can be quite useful - EMA and the gene test.  One thing to keep in mind is that Lyme patients can have an intolerance to gluten that will never manifest as classic celiac disease. So, even if these tests are negative, you could still be reacting to gluten. And, the gene test can be very helpful if your antibodies are high normal and in your case if you have low IgA/IgG, the tests are not accurate anyways since your body isn't able to produce high levels of antibodies to anything.The thyroid tests may not get you want you need as it looks like they first test TSH and if that is normal, they stop there - at least as far as I can decipher from the labcorp right-up (I'm assuming other labs are similar if not identical):https://www.labcorp.com/pdf/Thyroid_Cascade_Technical_ReviewL964_1107_2.pdf  The problem with that test is that they are looking for " classic " thyroid disease AFAIK. If you have autoimmune thyroid disease (very common for Lyme folks), then your labs can look perfect. So, testing antibodies is a MUST, but again, since you don't produce high levels of antibodies, that test will likely not be accurate, thus the only way that they likely can diagnose autoimmune thyroid disease for you is to do a sonogram - that was my experience as my antibodies were always high normal, but like you I produce very low normal IgA. I noticed a remarkable improvement in how I felt when I was taking the Diflucan.  In my case, it is still an ongoing battle however, but that is due to having to take abx for other stuff (e.g., tooth infection) after which I always require Rx antifungals. B.

 

I saw an allergist/immunologist in west Houston today. 5 hour round trip for me.The doctor is doing the following labs -1. IgE2. CBC with diff3. Pneumococal Immunity 4. Celiac Disease Complete Panel - I am not sure if this is the test I wanted - Test Includes: Deamidated gliadin IgA; deamidated gliadin IgG; tissue transglutaminase IgA; tissue transglutaminase IgG; serum IgA quantitation5. Vitamin D6. Thyroid Cascade Profile - I am not sure if this is the test I wanted - Test Includes: Thyroid-stimulating hormone (TSH) with automatic reflex (as diagnostically warranted) to free thyroxine, free triiodothyronine, and/or thyroid peroxidase (TPO) antibodies. If reflex testing is performed, additional charges/CPT code(s) may apply. (My take is that if my TSH is off, the other labs will be done, but not sure. If free thyroxine, free triiodothyronine, and thyroid peroxidase (TPO) antibodies are not tested, I will order them on my own.)6. IgG subclasses7. IgA 8. IgMMy IgG and IgM are consistently low. Have been since 2005. Her diagnostic code is: Hypogammaglobulinemia.I showed her all the red blotches on my breast, torso and legs and she told me it was yeast. I thought it had to be. Odd the other doctors had no idea what it was. She wrote a script for fluconazle 100mg for 14 days.She wrote a script for me to take Vitamin D 50,000U twice a week. I am already of B-12 sublingual.

I would like some input as to whether you think the Celiac and Thyroid tests are adequate if there is a possibility I have Celiac disease and Hashimoto?

 

Thanks millions for any and all input.

 

Maurene