I read an article:

raleigh86 · 05-04-2005, 02:16 PM

I just read an article from New England Journal of Medicine, dated Sept. 2, 1999. Even back then, they stated over 300,000 Americans suffered from lyme disease. It was found in all states, except Alaska and Hawaii. If there were that many sufferers 6 years ago, and the NE Journal acknowledged this, why are there so few literate lyme doctors? What exactly are they afraid of?

raleigh86

ticker · 05-04-2005, 03:27 PM

Hi raleigh86. Great questions. I think a lot of the difficulty has to do with the inaccuracy of testing, lack of research and how these diseases and meds can affect people differently.

I am glad to see you posting. Did you see my responses to you here and on the thyroid board?

raleigh86 · 05-04-2005, 03:52 PM

I read your reply from the end of March. I had a TSH test done and endo said it was within range. However, she increased synthroid, but I am still on low dose, .037, something like that. I just take an extra 1/2 pill then I was on before. I requested free T3 and T4. She said I could have these tests, but felt nothing would show. Her office called yesterday and said these tests were also in range. I asked for a copy to be mailed to me. If they aren't, I will get them on my next appt. I feel I have to keep track of this myself. Yesterday's info was a phone message, as I was not home, so I didn't get to ask any questions. She gave me lab paperwork for another TSH after I've been on the slightly increased synthroid for 2 months. That's all she is requesting. She feels quite strongly that I do not have thyroid disease, only nodules that should cause me no symptoms.

I am seeing lyme PA next week. What kind other tests should I ask endo for? I am tempted to ask my lyme PA to run these for me. My endo is OK, but I don't feel we are on same wavelength. She knows nothing about lyme and feels the thyroid issue is a coincidence and the 2 are not related. I am tempted to ask my primary doctor to treat me. Any suggestions?

Raleigh86

ticker · 05-04-2005, 10:12 PM

Hi Raleigh. I have heard that endos are often not the best to see for thyroid problems. It does not sound like your endo is very helpful. Asking your primary doctor to treat you may be a good idea. From what I understand, the TSH is not entirely reliable once you have started treatment.

I think it is even a better idea to ask the Lyme PA to run the thyroid tests. I am currently being treated by a PA for my thyroid problem and he is more knowledgeable and caring than any doctor I have seen. Ask to have the Free T3, Free T4, and thyroid antibody tests done. This will give a comprehensive view of your thyroid. Get copies of your results. If they call you on the phone, ask for the results and the lab ranges.

I believe that Lyme and thyroid disease can be related (double whammy!). Dr. Burrascano states that people who have Lyme can have hypothyroidism even when their blood results are normal.

Good luck next week. Please let me know how your appointment goes okay?

raleigh86 · 05-06-2005, 01:55 PM

TICKER:

I had a free T3 and T4 done last month. I asked for results by mail and just got them this week.

T-4 is 1.2 in range (range according to Quest is 0.8 -1.8 ) ng/dl
T3 is 278 in range (230-420 pg/dl)

I don't know what this means.

My previous blood work:

My first endo visit, Sept. 2004: thyroglobulin antibodies <2 in range (reference range <2 iu/ml)

Nov. 2004: TSH 2.31 in range (reference range MIU/L)

I had another TSH, I think, the first part of April. If I did, I don't have copy of results. I know it was a this time the endo upped my synthroid from the measly .025 to 037. They want another TSH. I am going to Lyme PA next week, and will discuss this with her. They use Quest lab, even though it's in Huntersville, they said they could run this thyroid test for me and send to endo in Raleigh. I will ask PA if she thinks I should have my primary doctor monitor me for thyroid. I hope to have thyroid blood work in Huntersville, to save me another trip to Quest when I get home. This is assuming Huntersville will even want me to have lab work done. Having these 2 issues, lyme and thyroid nodules, that endo stresses, is not causing me symptoms, is very complicated.

I started zithromax treatment for lyme this week. I am not too bad, but notice frequent and lots of urine. Kidney side effects goes with zithromax. I am also on neurontin for pain in both elbows, and upper left arm. This started with levaquin, but never got better after going off from it. This pain is very bad as the day goes on and during the night. I have only been on neurontin for 2 weeks, but found no relief, only added fuzziness.

I'd appreciate any suggestions.

Raleigh86