It's Lyme Disease Awareness Month

May is Lyme Disease awareness month.

Did you know that Lyme disease is the fastest spreading infectious disease in America?

Last August, the CDC upped their official count of new Lyme disease cases in the US annually from 30,000 to 300,000 ~ A TEN FOLD INCREASE. But that's only an estimate of reported cases. Many Lyme diagnoses are not reported. Therefore, the real number is even greater.

Lyme is a tick-borne disease caused by the spirochetal bacteria, Borrelia burgdorferi (Bb). While ticks are considered the primary mode of transmission, other insects (mosquitoes, fleas, mites, flies) can carry the Lyme bacteria as well.

Lyme disease is found in all 50 states and many other countries including Canada, UK, The Netherlands, Australia, Germany, and China, among others. 

For more detailed information please read What Is Lyme Disease?

For a better understanding of the Borrelia bacteria please read:

 The Complexities of Lyme Disease (Part 1): The Structure of the Lyme Bacteria

The Complexities of Lyme Disease (Part 2): Motility of the Lyme Bacteria

The Complexities of Lyme Disease (Part 3): When Lyme Bacteria Infects the Brain

The Complexities of Lyme Disease (Part 4): Lyme Receptors

Living each day with the effects of this complexed disease can be challenging to say the least. Nevertheless lets keep fighting the good fight, my Lyme Warrior friends. We'll see this through together.

In FAITH, HOPE, and LOVE.

~ Michelle

Update On My Lyme Journey: Part 2

It's been over five months now since I started my new Lyme treatment. Despite working really hard for more than three years using various protocols, my doctor and I found out last September that I still have an active infection. 

Discouraging, but we also found out a significant missing piece to this puzzle in how the chronic Lyme infection has affected my immune system. To read my previous health update about this, please go here. 

I am having some rough days on this treatment; it's really up and down. Some days I feel better, other days I feel bad, and many days fall somewhere in-between. However, it sure beats feeling the absolute worst every day, all day, like I have for so many years.

We're also treating the long-term Epstein-Barr (EBV) infection I've struggled with for quite a while, too. Last fall, the immunologist that my doctor consulted said it's imperative to treat EBV in conjunction with Lyme because they get layered together and play off of each other. Therefore, treatment must target or address both. 

 Several years ago, I was treated by a physician for over two years with different prescription antivirals (Valtrex and Famvir) for Epstein-Barr specifically. Clearly, it didn't work because it's still an ongoing issue for me. However, we didn't know about the Lyme infection back then, so I believe Lyme and EBV do work in tandem, just as the immunologist said. Before hearing that from him, I'd always felt a link between them because of my own experience.

We are also working to correct the severe immune dysfunction the Lyme bacteria have caused in my body. I certainly think this has played a role in the chronicity of EBV, but I also believe Lyme disease directly has everything to do with keeping Epstein-Barr in a reactivated state.

As for the immune dysfunction, I'm stuck in overdrive on my T-helper 2 side, which means it overacts. As a result, this has pushed my T-helper 1 side into suppression, which causes it to underact. All of this is due to the chronic Lyme infection. It's been happening for a lot of years and has thrown me into an auto-immune cycle. The immunologist also told us long-term Lyme infections cause the immune system to become so confused that it literally loses its intelligence, but we're working to restore it.

I'm experiencing more neurological stuff at times, too. I've been having a lot of buzzing, tingling, numbness, burning, and shock-type pains. The sensation on the left side of my face was very dull for several days. All of these sharp, burning pains feel like touching an electric fence that sends a burning jolt through you. While it isn't very pleasant to go through, I think it's actually a sign my body is working to heal and repair my nervous system. I believe the treatment is helping reduce inflammation and better support my neuronal function, which is precisely what it's supposed to do. 

Also, the large Lyme ring rashes I've had on my back, chest, and abdomen for almost a year now are significantly better since starting this treatment. At one point, I seriously looked like I had the Olympic rings on my back, except there were way more than five. Overall, it has mostly cleared up, and I am so glad. A big thumbs up for that! 

I'm not sure what's coming next in terms of how I'll feel. It will probably oscillate back and forth, but either way, I've got to do this. We must deal with this Lyme infection as outright as possible and continue reducing inflammation in my body. I do believe there are some good changes are in progress. I just hope and pray I feel better sooner rather than later.

On a side note, this year, 2014, marks twenty years of chronic illness for me. I can't help but think back through the many long and difficult years and wonder how I've survived it all. It's been hard, and that's an understatement. But, as I've said many times before, and it really is true, God has kept me in ways only He could.

My beloved mother is and has been all throughout these years, my "boots on the ground," if you will. And let me tell you that when you're chronically ill, you need present, tangible help every day. 

Love and well wishes from afar are nice, but they aren't the present and tangible help you need when you're so profoundly sick, debilitated, and fatigued. She's the one who has been by my side through all of this, and I am ever grateful. I can't begin to tell you how much she has done for me over these past twenty years. Not only the big things but also the small day-in-day-out things. I am blessed by her care and devotion in helping me be well.

Prayer helps sustain us very much, but practical help is equally necessary; it takes both to get through this. Actually, when you're that sick and fatigued, and you can't function, you need those real and present hands and feet more than anything else. 

So yes, prayer helps, but it doesn't make meals for you or tangibly meet your ongoing physical needs each day. It doesn't drive you to doctor's appointments and sit with you while you're receiving your lab or test results. It doesn't hold your hand while you're having an awful day. In other words, love in action from somebody is required.   

My Mom and Dad have both made many sacrifices to help me since I've been ill. And I understand how truly blessed I am to have the ongoing support I do because many do not. My illness has been hard for my family too. I know it can't be easy to watch someone you love suffer so much for so long. Chronic illness truly affects everything.

What I'm experiencing while on this treatment isn't something I haven't already on some level over the years, but it sometimes gets wearisome. And, again, if you don't have that ongoing tangible support, it's doubly hard and stressful. 

Many do not have the support they need, and they suffer more as a result. Everyone whose sick should have somebody in their life they can depend on to help them, but sadly, that's not always the case. And that hurts my heart.

Let me say that I absolutely believe God is doing what only He can in this, but in the meantime, I have to keep doing what is necessary, too, and it is a full-time job. 

I continue asking Him for perseverance and resolve, so if you'd like to pray anything for me now, please pray for that. And please pray for everyone who has Lyme disease. The suffering is often so tremendous, and not everyone has a caregiver to help them regularly.

Better yet, if you know someone with Lyme, or any chronic illness for that matter (especially with no ongoing support), offer to help them practically in some way. For instance, offer to run errands or help around the house somehow. Perhaps they need transportation to an upcoming appointment, and, if you're able to do so, filling that void would sure lift a burden. Ask what their specific needs are and then follow through with the particular help.

I'll end for now by saying, none of this is easy, but you just have to focus on what needs to be done each day - that's what I've learned through the years.

Take one day at a time. 

Be brave. 

Do the work. 

Cry when you need to. 

And then trust God with the rest. 

Michelle

Crying Is Okay Here

Consider this a personal invitation to let out your held-back tears while at My Lyme Symphony. Seriously. 

Tears are very healing and have different functions in the body. They help us process loss and grief. Equally, they help us to express profound joy and relief. Chemically speaking, tears act as a safety valve by releasing excess stress hormones such as cortisol. Dr. Judith Orloff, M.D., wrote an excellent article about all of this entitled, The Health Benefits of Tears. It's worth reading.

I believe it was pretty intentional that God gave us the ability, and the gift, to cry. Tears speak the truth of our hearts when the struggle or pain is just too great and overwhelming. They are a unique voice all their own because tears express what words often cannot. They give value to our experiences.

Lyme is very taxing, and we often find ourselves battling through one thing or another, so we need to be kind to ourselves in this healing journey. We need to honor our God-given tears when they come by allowing them expression. Please know that crying is perfectly okay here. In fact, I encourage it.

In love and friendship, 

Michelle

Update On My Lyme Journey

It has been quite a while since I 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) whom 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 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 are 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, an auto-immune cycle. He believes 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 over time 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 are chronically reactivated, particularly Epstein-Barr Virus (EBV), Cytomegalovirus (CMV), and Varicella-Zoster Virus (VZV). They can get layered in with the Lyme and other tick-borne co-infections. I've had respiratory infections I've never been able to recover from either fully, and now I know why—MTHFR mutations and this severe immune dysfunction, which is actually rooted in the Lyme infection itself.

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 inside cells that replicate like Lyme/Borrelias).

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. Strep, EBV, CMV, etc., reactivate. Candida can also begin to appear. Go here to read more. If that link is broken, try here instead.

While I have had a few improvements, I am still unwell. But, as brutal as this all is, and as sick as I still am, I can't tell you how validating it feels to finally find a doctor who understands what long-term Lyme infections do to the immune and nervous systems—to my immune and nervous systems. 

Finally, somebody who has a deeper understanding of what's really been happening in my body! I'm so grateful to Dr. N. for the revelation he gave my doctor and me and for the time and expertise he graciously shared.

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, which 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 and other affected organs and systems. And he said gaining back control of my immune system as soon as possible is highly crucial.

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 changed how we look at the overall picture and proceed with a different treatment. It's like he's given us a huge, missing piece to this crazy, complicated puzzle; an essential element.

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, especially in my immune and nervous systems, including my brain. Dr. N says absolutely no 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 Lyme infection.

According to Dr. N, we must do numbers one, two, and three simultaneously to be successful. 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; nineteen years total, to be exact. However, I knew deep down that 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 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 as 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

DesBio Lym Drops (Updated August 2014)

DesBio's homeopathic Lym drops (yes without the "e") have become such a helpful support in my overall Lyme treatment. It's not a cure all but I find it gives me some much needed relief; in particular it helps me when I'm having Lyme related headaches, eye sensitivity, and fevers. Not so much for fatigue.

Again this is not a stand alone treatment for chronic Lyme but rather a supportive therapy. Taking several drops three times a day yields the best results. But of course, each day is different and the benefits can last longer than others. So I take more drops at certain times than others. Some days, Lym is like a little miracle for me.

The point of all this being it helps to bring about some relief. And when you're suffering with a Lyme headache, ear pressure/fullness, sensitivity to light, fever or aching muscles and joints; any relief is welcome.

The deeper I go into treating my long term Lyme infection, the more I find I need this Lym homeopathic support. I honestly cannot be without these drops some days. When I don't take it, I suffer more; especially with headaches and light sensitivity. So I take it daily. Its as simple as that.

This is also great to have on hand for tick bites as you can apply drops directly to the site.

DesBio, short for Deseret Biologicals, makes many homeopathic, nutritional and botanical medicines. On a side note, they also make what are called Series Therapy kits for many different kinds of bacteria, viruses, etc. And they make one for Borrelia burgdorferi as well (which also includes Babesia). I treated with two of the different Borrelia Series Therapies (Basic and 1M) for over a year and it helped with certain things more than others. The biggest difference it made for me was in totally stopping a Lyme-related arrhythmia I had for two years prior to that time. My doctor and I didn't know Borrelia was at the root of the arrhythmia until it totally subsided after I started these potent homeopathic series therapies. That alone was huge!

I personally respond very well to homeopathic medicine. Certainly different things work for different people and I believe everyone has to do whatever works best for them. So anytime I find something that helps me in a significant way, I like to share it. And in sharing my own experience, I always hope it might be of help to someone else. If you've used Lym or any other DesBio products for Lyme disease, I'd love to hear if and how it's helped.

FYI: there are a few places online you can find this but otherwise; DesBio products are usually sold through healthcare professionals.

In love and hope,

~Michelle


*UPDATE - August 2014*

Desbio has recently changed LYM to Lyme Plus. The major difference is the adding of Babesia microti and Ehrlichia (thus the "Plus"), which makes this more comprehensive but is still different from the Series Therapies. I think it's a great formula to add as an aid to any Lyme disease treatment because many of us have Babesia and/or Ehrlichia infections as well. But remember; different things work for different people.