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Question about retesting chronic Lyme and knowing 'what' you're treating

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Posted 11/29/2015 8:28 PM (GMT -5)
This might sound like a strange question. I have been treated for about
eight years by an ND. Things have gone along fairly well. I know my
thyroid needs some attention and I'm seeing a primary care doctor for
that. The lab tests came back with high inflammation this past week.
(C-reactive protein). My Lyme doctor at one point said that Lyme wasn't
an issue now. He thinks it's the chronic fatigue that causes my problems.
I didn't question that, but now I am beginning to wonder. Hum.
Have any of you been retested for Lyme or
co infections say after about 5-8 years? Which
tests have you done? Have any of you ever used the zyto machine?
I still have fatigue symptoms and now some of digestive things
are coming back. Any input appreciated.
Posted 11/29/2015 9:14 PM (GMT -5)
Hi Dancing Dawn, I have not been tested with a zyto machine so I don't have an answer for you. It is good that you will be treating your thyroid issue because an endo abnormality can impact your Lyme treatment.

I am curious as to why your ND has not treated your endo issues and inflammation. One of the main things that Lyme does is to create inflammation in your body in order to feed itself. Is it possible that the inflammation is still present because the bacteria is still in your body?

By the way, your post caught my interest because I too am dealing with endo issues as well as digestive issues. As for tests, I retest the vitamins and have a complete blood work test done just to see how my numbers are. But for Lyme tests, I personally go with how I feel more than what the tests say since they are so unreliable.
Posted 11/30/2015 12:15 AM (GMT -5)
Dancing Dawn - are you treating for your thyroid?
If you are hypo thyroid, that could explain your fatigue.

Have you had your TSH, FT3 and FT4 tested?

Has your ND only treated you for LD, and not any co infections?
Posted 12/5/2015 1:57 PM (GMT -5)
Hello Healing98 and Girlie, As to Healing's question, why has your ND not treated your endo
issues and
inflammation? To answer that, he has. As of 10 months ago I stopped going to him. I
decided to take a break for various reasons, one of which is financial. Over the past 8 years
he has monitored my thyroid and Lyme and chronic fatigue. I went to an internal medicine
doctor who takes Medicare to check my thyroid and have blood work done. That was
about 3 weeks ago. One of the tests showed, high inflammation. Since I put up
this post, I have had another visit at a 24 hr. drop in clinic
which showed I have an UTI, urinary tract infection.
Oh boy. Such fun!!! I am taking antibiotics and feeling better.
Girlie Hello, I was testing with a new internal medicine doctor for many things.
One of them was thyroid. And he only did a TSH. It came back 2.1 which he said was
in 'normal' range. For me, normal is about 1.4. How is it for you? I am on a thyroid
dose. I may go back, and have the FT3, and FT4 tested. I am not real happy with this
new doctor though and it's hard to find a Primary care doctor who takes new patients or
doesn't have a long wait list. I don't expect them to treat Lyme, but this doctor spoke
badly about my ND. Life in Lyme land is not always easy when it comes to the medical
community.
Posted 12/5/2015 2:20 PM (GMT -5)
DD - if your normal for TSH is 1.4, and that's where you feel good - then you need to up your thyroid meds.

Definitely get your FT3 and FT4 tested.

When CD sees this, she will give you some good information on Thyroid testing...she's our expert...

Retesting for LD and Co's isn't worth the money IMO. The testing isn't good enough...and if it shows Antibodies - that doesn't mean you still have active infection - as once we are healed, our bodies may continue to produce the antibodies.
If it doesn't show any antibodies for Lyme - that won't mean anything either. As we know, there are too many false negatives to solely rely on testing.
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