just got my official diagnosis and a scrip for abx...

Good to hear from you Toronto M!!

You made quite the amount of progress - wow!!

Your LLMD is starting you on some powerful abx and I can only suggest that you start one and stay on that for a few days before starting the next one.

This is your only chance of identifying any possible reactions.

VSL is like the king of probiotics - kind of hard to beat. Maybe you could take one/week and rotate in other probiotics?

If you are so inclined, home-made kefir can really give you some probiotic punch - up to 5 trillion organisms in a small bowl. The stuff is really easy to make.

As a thyroid patient since 2007 who suffered needlessly under the care of clueless doctors until becoming educated on the topic, I ask you how it was determined that your thyroid is functioning fine?

Thyroid issues are yet another health condition for which patients are grossly mismanaged. If you have any thyroid lab results you'd like to share here, I can tell you how they compare to those a healthy person would have.

Hopefully, you've had Free T4 and Free T3 testing. They usually look something like this on a lab report:

Free T4 - T4 or thyroxine, free, direct
Free T3 - tri-iodothyronine, free, serum

Please be sure to post the reference ranges for each result. Different labs use different ranges and your results can only be properly interpreted within the context of your lab's ranges.

Best of luck to you moving forward!!

here are some lab results..

T4 free - 20 (range: 12-22 pmol/L)
T3 free - 5.4 (range: 2.6-5.7)
thyroid peroxidase 267 (range <35 klU/L) (this is the one that was highlighted)

Thanks for the tips on gradually adding ABX

Bartonella titer is highly reactive at 1:128

The LLMD didn't seem too concerned about my adrenals, maybe since my cortisol test and magnesium, etc. were normal. I don't feel like digging up the paperwork, I only had a blood test done... could there have been creatine on that?

Also, I just found out rifampin is hard on the adrenals... any thoughts?

I am beyond thrilled to see that your Free T4 and Free T3 levels are excellent - they are exactly the types of levels healthy people have.

I wouldn't worry about high thyroid peroxidase antibodies right now - they are markers of thyroid inflammation and Lyme is famous for causing that.

Yes, it would be prudent to continue to monitor your Free T4 and Free T3 levels to make sure they stay as good as they are now.

One less thing to worry about - yay!

That's great Toronto m! Hope you're on your way to beating this thing once and for all. You've definitely got quite the treatment plan! Does the dr also use herbal protocols or abx only? And what's this Bart test through ohip? Never heard of such a thing. Wondering if there is a similar test for the other co infections.

You are taking enough meds now that you can wait to see what happens before entertaining the thought of a Babesia or Babesia-like infection.

Our herxes sometimes provide a lot of information. I hope you plan on maintaining a daily symptoms journal if you're not doing so already.

Rowingmom shared a link to the spreadsheet she maintains for her daughter in the "New to Lyme" thread.

Steroids are contraindicated for these infections because they suppress the immune system. Truly, people who take hydrocortisone are at risk of suppressing adrenal function as well. I didn't have the impression that your adrenals were of any concern right now.

Since you have so many new things to start and doing so one by one is really best, I see no reason why you couldn't leave the hydrocortisone on the back burner until you talk more with your LLND.

Hi Toronto! I'm new to this forum
So when you say your thyroid results were normal but were diagnosed with thyroid disease how did that come about? I don't believe my results are a true reflection of my condition and wonder how accurate these tests are
Thanks

I've just started abx and noticed I get a real bad reaction to rifampin.

I was doing bee venom therapy til recently, I developed a reaction to that after 4 months of no problems, I think I crashed me adrenals, even though I had my blood cortisol tested and it was fine.

My LLND thinks there may be a problem with the ACTH being secreted by my brain.

When I took rifampin (twice now) I've noticed I got a reaction similar to the last time I did bee stings. Coincidence? I know rifampin is hard on the adrenals.

Thoughts?

Did you wait to start the Rifampin...a few weeks after doxy?

Also, starting the Rifampin at 150 mg once daily for a week or two might be a good idea.

I would think it's available in Canada...I don't know much about it...I had looked it up when my cortisol levels were high - a few years ago - when I was undiagnosed. I think the difficulty will be convincing your Dr. to have it done.

I did not have it done...I had a cortisol suppression test done with a low dose dexamethasone. I took a very low dose of dexamethasone before bed..and then the next morning a blood test.
This is to see if your pituitary gland is producing too much ACTH.
My morning test showed my pituitary gland was not overproducing.
I then asked my GP for a CT of my adrenal glands...just to make sure there wasn't a tumor. (This was in my 'freaking out' stage before diagnosis)

I STILL wasn't satisfied...and had an mri of my pituitary gland.

The high cortisol was the only abnormal test I had after several weeks of weekly blood tests done...so I thought I had found out what was wrong with me.

I had my cortisol tested again a few months later (24 hour total urine cortisol)...and it was normal.

Here's a link:

www.healthlinkbc.ca/medicaltests/content.asp?hwid=hw1613

Hey toronto how is it going ?..any progress