Sunday, October 20, 2013

Update On My Lyme Journey

It has been quite a while since I've posted an update on my health, and where I am in this Lyme journey. So I'll get straight to it.

I still have an active Lyme infection. Even after three years of various kinds of treatment.

Long term Lyme infection = chronic Lyme disease.

This was confirmed by a Ph.D. immune researcher (Dr. N) that my doctor consulted with after I started breaking out with multiple large ring rashes on my back, chest, and abdomen during the past several months. Turns out, this is a sign of active Lyme. He said this is what happens when the body doesn't know what to do with the infection anymore; so it comes out through the skin (an organ itself).

He also told us some things we didn't know about how the Lyme infection has affected my immune system, and how this happens when the Borrelia bacteria is in the body long term and isn't sufficiently treated or diagnosed correctly to begin with, allowing greater dissemination. I think this is a common picture for many of us with chronic Lyme.

Dr. N says a long-term infection with the Lyme bacteria (Borrelias) confuses the immune system to such a degree; it causes it to "lose its intelligence." I'd never heard it put that way before, but I can see this is true.

Specifically, he told us the Lyme infection has caused my immune system to become stuck in a dominant Th2 (T-helper) cycle, which is an auto-immune cycle. He feels I've been stuck in this a very long time - years. This means my Th1 side is suppressed, and none of this is good because it creates a tremendous imbalance in how the immune system responds to pathogens, toxins, and allergens. One side of the immune system overacts, while the other underacts. If this goes on overtime without correction; the immune system can literally burn itself out.

Interjection: I'm pretty sure God has been preserving me.

Interestingly, this explained some other issues I've had for years, like how I easily get and cannot get over certain infections including some dormant infections that have gotten reactivated chronically, particularly EBV (Epstein-Barr Virus), CMV (Cytomegalovirus), and VZV (Varicella-Zoster Virus), which can get layered in with the Lyme and other tick-borne co-infections. I've had respiratory infections I've never been able to fully recover from either. Between MTHFR mutations and this severe immune dysfunction, which is actually rooted in the Lyme infection itself, now I know why.

T helper (Th) cells are immune cells. These cells are neutral until a pathogen (bacteria, virus, parasite, fungus), toxin, or allergen comes along, and they convert into either Th1 or Th2 cells, depending upon the threat.

Th1 cells fight viruses, cancer, yeast, and intracellular bacteria (bacteria that are inside of cells and replicate like Borrelia [Lyme]).

Th2 cells fight extracellular bacteria (bacteria that do not invade cells or replicate), parasites, toxins, and allergens.

Dr. Paul Cheney, M.D. explains immune dysfunction syndromes quite well. He says when a person is Th2 activated, they no longer have the defense mechanisms to keep dormant all the things caught in their past. They cannot suppress or control them anymore. EBV, CMV, Chlamydia pneumonia, etc. reactivate. Yeast also begins to appear. Go here to read more.

While I have had a few improvements, I am still unwell. But, as difficult as this all is, and as sick as I still am, I can't tell you how validating it felt to finally find a doctor who understands what long-term Lyme infections do to the immune and nervous systems. FINALLY - somebody who has a deeper understanding of what's been really happening in my body! I'm very grateful to Dr. N. for the revelation he has given my doctor and me, for his time and expertise he has so graciously shared with us.

I am grateful to my doctor, too; I feel blessed to have her. She has walked with me through this for the past seven years that I've been seeing her. We've had many ups and downs, and over this last year, we both knew something else needed to be done. As she put it, while there have been some preserving benefits in my treatments, I'm still not getting well, and that is a big problem. The fact that I was misdiagnosed for so long - 16 years - has only complicated matters. For the record, she is the one who discovered I really have Lyme disease, which was a process in itself, but that's another story for another day. 

Clearly, a new protocol is in order, and I have started a new comprehensive treatment based on Dr. N's recommendations. It's totally herbal (with ongoing homeopathic and nutritional support), and while I've used some herbal therapies in the past, this is a protocol I've never done before. I have been on it for about a month now, and the most significant difference I can tell is that it's clearing up my Lyme rash. Nothing else helped before this.

Dr. N. laid out a very realistic picture of what he believes this treatment must entail. He said it must be comprehensive and not just focused on "killing" the Lyme bacteria, which is really difficult to do once Borrelia spirochetes invade the cells and replicate. It must also address inflammation, damage, and dysfunction in the entire nervous system as well as other affected organs and systems. And he said gaining back control of my immune system as soon as possible is highly essential.

We already knew some of these things and have been working to accomplish them. However, Dr. N's insight into how the Lyme infection has affected my immune system really changed how we look at the overall picture, and how we proceed with a different treatment. It's like he has given us a huge, missing piece to this crazy, complicated puzzle; a truly necessary piece.

Our primary treatment keys:

1.) Treat the long term Lyme infection as outright as possible using Berberine as a primary herbal antibiotic. Then switch to another herbal combo after 2 months. Back this up with homeopathic remedies.

2.) Reduce overall inflammation in the body, but especially in my immune and nervous systems, including my brain. Dr. N says absolutely on one can fully heal or be well with high levels of inflammation in the body. We must also help repair and support the entire nervous system. This is a longer process.

3.) Correct immune dysfunction by helping restore intelligence back to the immune system. This will help with chronic viral infections as well as the chronic Lyme infection.

According to Dr. N, to be successful, we must do numbers one, two, and three all simultaneously. And so we are. 

4.) Once my immune and nervous systems are stronger, we will start working to correct other dysfunctions in the body like adrenals, thyroid, liver, etc.

Also, maintaining the ability to detoxify is always near the top of the list. If one cannot detox, then one cannot heal. This is something we've been working on for a while and continue doing.

I'd be lying if I didn't say I felt somewhat disheartened by this, and that this has been going on for so long just adds to it - 19 years total to be exact. However, I knew deep down the Lyme infection is still an issue for me because I know my body. If nothing else, this certainly speaks to the complexity and chronicity of Lyme disease. And it speaks of how stealth the Borrelia bacteria are; like it literally hijacks the immune system.

I know this has been rather long, and honestly, I wrestled with writing it because it takes a lot of energy to put it all together. Still, I wanted and needed to write an update if only to document it all for myself. I will try to post periodic updates as I work through this new protocol.

Please pray for my endurance; it would be much appreciated.

I can't even begin to tell you the different treatments I've tried over the years (I know those of you who are also struggling with Lyme totally understand), and how I've worked my butt off to be well. So I really hope and pray this will be a key or at least a big step forward. Some days, it's just plain hard, but I'm still holding to my faith.

The Lord's brought me this far, and I know He will see me through.

With love,

~ Michelle

4 comments:

  1. Dearest Michelle,

    You've been on my mind and on my heart a great deal over the last month but as my world has been crazy I haven't sat down and made time to tell you so. Your writing makes things so easy to understand. I have tried to explain that same thing and I just get flustered. I know it can be draining to write but I am glad you do because it is always a blessing to me to read your writing. Even updates. ;-)

    I'm sorry there is so much going on with you. It seems like the longer we are sick without treatment the more difficult things are once we have a diagnosis. It sounds like Dr. N has been a blessing for both you and your doctor. I'm happy you have been able to access her expertise. I think it's so important to have doctors that have a deep understanding of how lyme can really mess with your whole body system(s).

    I hope your protocol goes well and you are able to successfully achieve goals 1-3 in a timely manner and then move on to overall healing. Stay strong and rely on God to carry you through those times when you are too low and sick to do so on your own. He never gives us more than we can handle and I claim that quite often. Sometimes, I think it's comforting to know He thinks we are so strong that we can fight and persevere like we do. Believing in you always, praying for you often, loving you from afar. Warm Regards, Ginny

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    1. Ginny, thank you so much for your sweet comment and loving support. I appreciate it more than you know. Know you've had so much going yourself. Sending much love across the miles to you as well, my friend. Always, ~Michelle

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  2. Michelle,
    Thank you for posting this is it very informative, so your energy has not been wasted at all. I pray for your endurance, please keep the faith, i'm right there keeping it alongside you.
    blessings,
    jennie

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    1. Jennie, thank you. Appreciate your prayers and support so much. We will certainly keep the faith together :) Sending my best regards to you. Love and blessings, ~ Michelle

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