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.

H.O.P.E.

 1. Hope [ho'hp] transitive verb: 
a) to desire with expectation of obtainment;
b) to expect with confidence: trust; rely

2. Hope [ho'hp] noun:
a) desire accompanied by expectation of or belief in fulfillment; expectation of success 
b) the feeling that what is wanted can be had or that events will turn out for the best
c) someone or something on which hopes are centered
(Dictionary.com and Merriam-Webster)

Hope doesn't necessarily exist apart from struggle. In fact, there's usually a battle raging. What hope does is to remind us there is the possibility of something better. Hope speaks a continual, "Don't quit." It 's that ever present whisper in our hearts that says, "It's not over. You can do this." It's the proverbial Rocky music in our ears. 

And there is a greater hope as well. Romans 5 hope. Colossians 1 hope. It's the ultimate hope in my life. It's what keeps me going in this long, difficult journey.

~ Michelle

"While there is life there is hope - and while there is hope there is life." 
- E.E. Holmes

The Long and Winding Road of Chronic Lyme Disease

I had a few better days last week. Now, I'm not feeling well. Again.

Many other Lyme friends are struggling a great deal these days too. Is it the universal time for Borrelia spirochetes to divide and replicate?? Is something else flaring up? Perhaps other long-standing co-infections that need attention? Or are our bodies just worn out from the constant fighting of pathogens and continual repair efforts? 

It's all so taxing.

Of course, we know the constant state of flux we're in. This disease complex is so crazy up and down; I feel like a battered yo-yo. A yo-yo that's been wildly flung every which way but loose for almost twenty years.

Better yet, it's like the roller coaster ride that never lets you get off. It yanks you away through frenzied highs and lows, dips and drops, and sudden turns that thrash you from side to side. 

Oh sure, it slows down ever so often, but it never entirely stops. Both the relief and the frustration of it all is in the downhill coasting. You're really moving. You've got the momentum going for you, but soon enough, you hit the long climb back uphill. Again.

This speaks so well to the struggles of living with this disease. It can be very discouraging.

We work hard to get well, often finding something that helps for a while. But then it seems we find ourselves repeating this same process over again. And yet again, we can find ourselves back at zero.

This repetitive process of working so hard and long for little gain can be draining and disheartening. It's the constant daily doing that can leave us weary. And many of us have been "doing" for a lot of years. 

Myriad doctor's and therapy appointments, treatment protocols, supportive home therapies, specialized diets, food preparation, juicing, ongoing research, etc. Believe it or not, that doesn't leave much time left in the day. Working to recover from this debilitating chronic illness is a full-time job, and it can be pretty exhausting when you're already running on empty.

And then there are the losses that accumulate along the way. Some are big, and some small, and then some fall anywhere in between. Physical losses are tough, but so are the loss of friends, jobs, livelihoods, and dreams. There are different kinds of losses for different people. Nevertheless, loss is a part of this illness to some degree for all of us.

It has been my experience that not everybody can hear the truth of my struggle, which by the way, expressing them—my struggles—doesn't mean I've lost hope or given up on my faith. If anything, this fight has taught me how to hold on, press in, and persevere even more.

Truthfully, not everybody can get in the dirt with you. Not everybody can be in it for the long haul. This is true for many things in life, and it's most certainly true in the long and winding road of chronic Lyme disease. But thank God for those rare and priceless jewels who can!

It's sometimes more than most people can bear. And I'm not blaming anyone for that because it's often more than we can a lot of times, too. Still, it can leave us feeling alone and misunderstood. The truth is this whole thing is really messy and absolutely changes everything. No part of life isn't affected.

Clearly, everyone has to go on about the business of living. People have responsibilities; they have to work, go to school, pay bills, and take care of their families. And everyone should be able to relax and enjoy vacation and downtime every now and then.

We want these things too. But many of us have to do them on top of being very ill if we can even still do them at all. We want to live our lives free from sickness, exhaustion, pain, debility, and limitation. We want to have the health and energy to do fun things and make a difference. Mostly we just want to simply go about the business of living our lives too.

All of this is a truth that seldom gets fully understood by those outside looking in. I've said this many times before, and I'm repeating it; no one can fully understand that which they've never fully experienced for themselves.

It is also true that I believe God works in and through our circumstances, that He has His purposes, and they are redemptive and restorative in nature, that He considers the many and not just a few. And that understanding His perspective and timing are essential.

We should not dismiss, overlook or underestimate this about the Lord.

Still, the journey is difficult. I don't always understand. I don't know why so many of us, including children, suffer greatly from an insidious disease that wreaks havoc on our bodies and is heartbreaking for our loved ones. I don't always understand why this truth is so adamantly denied, opposed, and made light of. And I don't know why some people cannot get the proper treatment they need and deserve. 

This, however, is where my belief in divine justice comes in. The truth cannot remain hidden forever. Justice will not always be denied. The powers that be will one day be held accountable. The whole truth will be revealed for what it really is. And then justice will be duly served one day. 

That's my prayer, at least. 

I also know we've all been pained by more loss lately in the Lyme community.

Last week, like many of you, I went on Facebook and saw that another fellow Lyme Warrior had died, a young, beautiful, beloved mother and friend to many. I didn't personally know her, but at that moment, the gravity of it all really struck me, and I just sat there and wept.  

I wept for her and her daughter, for the rest of her family and friends. I wept for everyone I know that has Lyme. I wept for everyone I don't know who has Lyme. And I wept for myself.

It was heartbreaking, gut-wrenching, and cleansing, all at the same time.

I know many of you were deeply affected as well; I could almost feel our collective grief. 

Sometimes I think only our tears can really speak the truth of our hearts and struggles. So let the tears fall. Let them be our voice and express what our words cannot.

And let's keep on loving and supporting one another. Let's keep working to make something beautiful out of all this suffering.

With Love and Compassion,

Michelle

Photo Source