frustrated is an understatement

I am feeling as though my body is toying with me. Nothing is making sense. I just had my thyroid blood test re-done, so primary care could see where the numbers are ... the TSH was progressively getting lower with each test over months' time, to where it was officially in the low range 5 weeks ago. The free T4 was rising (not as fast as the TSH was falling though).

Primary care just the other day when I was in for another reason, she mentioned that she feels that it's subclinical hyperthyroid at play, which will soon turn to official hyperthyroid. Well, lo and behold, the results came in on my LabCorp account this morning, and drumroll....... now the TSH is more than 4 times what it was, and the free T4 is lower (now smack dab in the normal range at 1.17)

It doesn't end there -- a little over 2 weeks ago, i had a urinalysis and it was showing really high white blood count but no symptoms (no pain, no fever, etc), so nothing was prescribed. the one I had the other day -- showed ZERO. Primary care prescribed an antibiotic the other day anyway because at that point I was getting pain going upward and she was afraid it may be working toward the kidney, so I am on it for 7 days.

It's like this for so many tests.

Does lyme do that, where it will come and go with causing different levels in the blood and urine to fluctuate between high and low?

I am still waiting on the cardiologist to clear for the lyme treatment -- I've got this monitor on for 3 more weeks. LLMD said it's safe to go forward, but the over-cautious part of me is too anxious to do it :( Aside from the herbals and such. I just can't get myself to take high doses of azithromycin for months with that warning from the insurance about the QT prolongation possibility, without getting cleared by cardiologist.

(adding to the confusion and frustration, cardiologist said even if I do have lyme, in his experience lyme would slow the heart .... but them LLMD said that the medical group cardiologist is part of is not lyme friendly at all).

I feel as though I am standing in a room with my feet nailed to the floor, unable to move in any direction, with all of these tests, ideas, opinions, etc. swirling crazy around me like a tornado.

I wish I could take a leap of faith and just say "I am going this way" and not look back. But the doubt (and fear, esp. with the meds!) prevent that. Since August, my life has been in upheaval, this stupid illness has ruined so much, from relationships, to the family vacation we were supposed to take (but didn't because my body flaked out yet again).

Sorry to vent, I just needed to let it out, and hoping maybe some of you all may have insight as to what is going on, or have similar experiences.

(I've also got a vent about the cardiologist's office .... I called the earlier in the week asking a question about the event monitor results thus far, and never heard back. Called again this morning, to be told they'd resubmit the question to the nurses ... just wait. yeah, that's the norm these days, waiting ... and worrying).

I too am sorry for all you're going through. You need to be your own advocate with this illness since there is so much to understand about it. I'm glad you found us so you can gain a better understanding of what to expect and the various treatments to help you through it. I hope you're heart doc will get back to you soon. Keep venting in it will help you! :)

The forum and members is a great help, not just for the info, but for the personal experiences and support from others. It's so nice to have a place to turn to, because so few can relate in my life.

I wish that the 27-28 days of doxy would have knocked it all out (wishful thinking, I know). I have been thinking if I'd have stayed on the doxy, I'd almost be at the 3 month mark in a few days, and (ideally) be making great headway. But, as my husband pointed out, that bad reaction I had that made me stop taking it (after ER visit) wasn't worth the risk, in that when it reached the point of getting hives and itchiness/tightness in the mouth and throat, it could have gotten more serious quickly and at that point, as the ER doctor pointed out, the risk outweighed the benefit of continuing on it, esp. when there were alternatives. The wrench thrown in it was the arrhythmia that was being more pronounced and had the red flag for the new LLMD's plan.

Nurse did call back -- she said that the dr. looked over the info, and there wasn't any sign of arrhythmia on 'any' of the strips. I guess he only glanced at the ones from the one morning I asked about specifically, because I do know that there had to have been tachycardia going on on many of the recordings from the event monitor, because the one day my pulse was running 120+ for most of them. She did say that unless the monitoring company specifically calls with a serious issue, they don't look the strips over until the end of the study.

knack, I wore an event monitor for a month because of chest pains, "electrical shocks" in the heart and skipped heartbeats. I wore it soon after the infection but before I knew I was infected. They are correct in that the monitoring company will not disclose any information until the end of the study. They did call me a few times during the study because I had either place the wires wrong or the wires had gotten disconnected from the device.

At the end of the study they found that I had over 700 incidents where my heart had skipped a beat. The cardiologist said it was normal for some people and that if I was concerned, that I could be put on beta blockers.

Well, after all was said and done, it ended up that the electrical shocks, the sharp chest pains, the loss of breath, and all of the other things that i attributed to the heart were gastrointestinal related. I was prescribed Omeoprazole and within a few weeks most of those symptoms went away.

As for the TSH, T3, T4; I too had it tested because I was sure that I had a thyroid issue. However, my T3 (free & total), my T3 (free & total) as well as my TSH were right in the middle. It wasn't until they ran the AntiTPO test that they found that I suffered from Hashimotos (hypothyroid). My morning basal temperature was (and is) around 96.7 to 97.3 in the mornings. Too low for me. The AntiTPO confirmed that I did have a thyroid issue. One of my worse symptoms was severe anxiety, panic attacks, and depression. I never knew you could be depressed while in panic mode. So anyhow, on top of all that, it also affected my Testosterone levels.

As far as azithromycin; I did not know about the QT prolongation possibility until now. I was on Clarithromycin for 5 months and did OK with it. The only side effect was minor stomach discomfort.

I have recently been prescribed azithromycin but I can't seem to take it. One pill cause extreme depression, anxiety, panic attacks, and severe dizziness. I have tried it (one pill) on three different occasions and on all three occasions I had the same outcome. I guess I will just have to go back on the Clarithromycin.

about the illness ruining our lives- yes, it has ruined mine. I am not the same person I was before. I have missed opportunities for job advancement at work, I have lost all of my friends and most of my family, and our life savings have dwindled to nothing. The only person who has stuck with me is my wife. She is the reason that I manage to get up each morning and why I have not given up yet.