Update after getting results, talking to doctor tomorrow!

Hi Josh -

Well... at least you have a little info to work with.

First, your IGeneX not negative. You have an Inderminate for band 39, which is an immune reaction to a Lyme-specific or Borrelia flagellin protein component of the Lyme microbe. The "Indeterminate" simply means not a lot of antibodies were found. But this is also kind of like being "sorta pregnant". How can your body react to something that isn't there? If the Lyme DNA is there, it's Lyme.

These serology tests are often inaccurate, producing falsely negative results because they rely 100% on a fully-functioning immune system to create measurable responses with antibodies. They don't measure the amount of infection, they're looking for your immune reaction to it. But most people are really really ill and their immune systems are struggling. So, most people don't test well with the serology tests. In addition to the challenges, some LLMDs like to "provoke" a more accurate immune response with something like Olive Leaf Extract to boost your immune function - worked for me. Some are using the DNA Connexions test, which is more comprehensive so that's also a good thought. I had a CDC-pos IGeneX for Lyme and another positive bart test when I first started out but EVERYTHING on my recent DNA Connexions was negative so it's not entirely reliable... but maybe helpful.

Some MDs like to go by the IgG vs IgM results, too - but these are also rather meaningless. Given the immune system's unreliable response to the Lyme infection, you can't determine a new or existing/aged infection by the IgG or IgM response (and I'm not all that convinced you can go by these for other infections, either but that's irrelevant).

Most MDs don't know how to---or don't feel confident in reading into the WB tests band-by-band so they often just go by the official CDC results. But even the CDC directs practitioners to use a clinical diagnostic approach, not to rely on tests alone (even though the CDC's surveillance protocol is the reason these tests often produce falsely negative results... there's no excuse for this kind of misinformation but there it is...)

Regarding your other labwork -
Your adrenals are also clearly struggling. This could be due to the immune system struggling and perhaps stress, and just being run down. Being sick is hard on the body. Lyme likes to deactivate the immune response. One feeds the other when your adrenals are always working in overdrive to keep up.

I think it's good that your specialist is trying to rebalance your adrenals and others might be able to share more specific info to help with that. In my experience, it was too complicated to achieve just with different supplements. I also had a lot of detailed neurotransmitter testing and levels evaluated... and I spent a lot of money over two years just chasing my tail. Nothing worked - until I quit my job and slowed my life down considerably... and started healing gut and body. A year later, my adrenals, thyroid and most of my neurotransmitters finally recovered. No one wants to hear that - but that was my experience.

In lieu of stepping out of life, you have to do everything you can to pull stress out of it - regardless of any magical supplement you can (can't) find. This includes even the good kinds of stress like excitement and adrenaline. It all triggers your adrenals to do things that put it into overdrive. There are effective ways to meditate, breathing exercises, zoning out... all help rebalance sympathetic and parasympathetic nervous systems.

Hope that's helpful. If not, just keep asking questions!

-p

Post Edited (Pirouette) : 5/23/2017 4:41:34 PM (GMT-6)

How is your Dr. addressing the high prolactin? Have you had any imaging of your pituitary gland?

Did you have Calcium levels tested as well? (they should be done with the PTH test)

Both are pertinent when diagnosing the Parathyroid issues.

I did have an mri of my pituitary gland...dye -enhanced...early on

Also had the PTH and calcium tested for parathyroid.

I've had so many tests done.

Knowing for sure you got bit and then having lyme related symptoms, you don't even need a test.

The tick that bit you, transfer some not so good things to you. Bacteria, microbes, pathogens. Regardless what a test says you know that you must treat. Antibiotics and/or herbs, strength your immune system, etc.

Don't get to caught up on test results. You have unpleasant symptoms and they are common lyme symptoms. You remember for sure being bit.

Work with your Naturopathic doctor and start the healing process.

I like how lay-man that's written, right up my alley. Reading it now, thank you Girlie!

I was told not to start the doxy by someone else, that it could spread the Lyme. I've never heard this before, I know if I do have it, it's chronic Lyme, so will I see any effects taking it, negative or positive?

Hi Josh,
As for your thyroid, cortisol and testosterone. My llmd is treating for those also with a similar, though not identical approach. I'm within the reference range on all, but reference and optimal ranges are different. I'm in the lower part of reference range for testosterone and thyroid, lower reference range for cortisol in morning and mid day, then above range @5pm and 10pm.

As Pirouette stated, the Lyme and coinfections mess with multiple systems : endocrine, nervous, immune, and musculoskeletal. It's also possible that your hormones were out of balance before you got sick, and thus opened the door for Lyme and coinfections to go on the march after lying dormant for years.

FYI, regular establishment md's rigidly adhere to reference ranges when it comes to hormones. Functional medicine docs know better. I'll be curious to see what your endocrinologist says.

Dr G, my new llmd is featured in this article you may find interesting. He talks a lot about hormones and supporting the endocrine system to make Lyme treatment less uncomfortable. These 2 guys, Dr a and Dr g are experienced Lyme specialists. I think they may have much in common with your doc's approach but prioritize differently. Read the article and see what you think.

http://www.townsendletter.com/July2014/lymeneuro0714_2.html

I imagine that the testosterone gel is quite expensive if your insurance isn't paying. You may find herbs like maca and muira puama will naturally raise it for less $.

Have you tested for babesia, Bartonella, erlichia? If you're only treating Lyme yet have undiagnosed babesia and Bartonella, that may confound treatment. Chances are better than not, you have at least one coinfection. I think you'll get an amen or 2 on that one on this forum.

Lastly, I saw a naturopath after getting nowhere with my pcp and insurance doctors. Kudos to him for suspecting Lyme and guiding me to igenex where I tested positive for Lyme, babesia and Bartonella. Unfortunately, he was only minimally Lyme literate and very limited in his Lyme treatment chops. I recently fired him and switched to my true llmd who is ilads trained better able to help me tolerate this gnarly treatment. I wish I could push the rewind button and go back to September and start out with my new doc.

Best Regards,
BJD

Post Edited (BJD55) : 5/25/2017 6:57:09 PM (GMT-6)