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Posted 12/27/2015 5:22 PM (GMT -5)
I'm 73 and I've been sick for over a year. It started with tiredness and has developed into serious fatigue, muscle aches, an ongoing pain in my lumbar spine (possibly the result of old surgery) and malaise. I don't dare drive any more and my wife has become caregiver. My PCP referred me to a rheumatologist and he has developed a "diagnosis of exclusion" of polymyalgia rheumatica. With my doctors' OK, I have gone out to Cleveland Clinic and Grand Rounds for second opinioins. CC thought it was PMR possibly complicated by GCA, GR thought it was fibromyalgia. Neither had any new recommendations. I've been on prednisone for over a year but it hasn't had the impact expected for PMR and I'm tapering off. I'm still very sick and getting worse. I've had every test known to man and will be seeing a neurologist for m-gravis and normal pressure hydrocephalis next week. Any ideas? DRW
Posted 12/27/2015 5:53 PM (GMT -5)
Welcome DRW!

I'm sorry you've been sick for so long and have no answers. As a thyroid patient, I will not deny that your symptoms got me wondering about your thyroid function.

If you've had a lot of testing done, would you be willing to share the results of your thyroid tests?

Specifically...

Free T4 (T4 or Thyroxine, free, direct)

Free T3 (tri-iodothyronine, free, serum)

TSH (Thyroid Stimulating Hormone)

I ask you to share your results because all too many doctors look at in-range thyroid levels and declare the patient "normal" when he/she is anything but.

Let's see if a malfunctioning thyroid is to blame.

And, because you joined the Lyme forum, I'm guessing you might be suspecting Lyme. Have you had a Western Blot done? Do you have any results to share even if you were told the test was negative?

Unfortunately, Lyme is yet another commonly-missed diagnosis.
Posted 12/27/2015 6:31 PM (GMT -5)
Hi DRW!-

Welcome to our community! I am so sorry to hear about all of your symptoms! Sending you many ((hugs!)) I hope you stay around and ask any question that you might have. There are a lot of friendly and knowledgeable people here.

If you are looking for getting tested for Lyme , I would suggest getting tested through IGENEX! Please don't get tested by your regular physician. A lot of their tests are not sensitive enough. Due to outdated and unreliable testing for Lyme you might test negative. Lyme bacteria are very clever and can hide in our system, which can lead to a false negative on test results.

Please read the "New to Lyme?.....Start Here!" thread. This is located at the top of the forum. This has a lot of great information. There is information about IGENEX testing, a symptoms list, detoxing, and so much more.

You might also want to look for a Lyme Literate Medical Doctor (LLMD). Since we can't post names of LLMD here, I suggest that you enable your e- mail option. To do this : 1. Click on "My Profile" 2. Click "Edit Profile" 3. Click "Show my E-mail" 4. Click "Submit"

After you enabled your e-mail, you can start a new thread and ask for help finding a LLMD around your area.

You can also search for a LLMD through this website : www.lymediseaseassociation.org
Through this website, you have to register first,You can search for a LLMD 3 times a month.

Best Wishes!
Posted 12/27/2015 6:42 PM (GMT -5)
Howdy DRW. So very sorry you have been sick for so long.

The above gave you a lot of information.

My one thing is that doctors don't like to hear that their patients have lyme. First they know nothing about it and second, the majority do not know how to treat it.

I was sent to a neurologist and he said to me "you don't get a headache with lyme disease." Well, I tell you what he was so wrong!! Just be careful what you believe that comes out of the doctors mouth. You really do have to be your own advocate if you suspect lyme.

Good luck and keep asking questions.
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