Brief Health Update and The Blessings of Autumn

Hi friends. It's been an exceptionally rough few months for me. Honestly, I've felt so bad and so fatigued I haven't really cared about writing. I've had many bedridden days again and I hate it. I know so many of you understand exactly what I'm saying. Earlier this year, we focused on Rocky Mountain Spotted Fever and felt my body needed to detox before working through anything more. So over the last several months I've been doing a comprehensive detox protocol, especially in preparation for a stronger, deeper level of homeopathic Lyme treatment. While I've done detoxes before, I've never done one this comprehensive. And it has absolutely kicked my butt and sent my into a crash I didn't expect. But my labs show I am in adrenal exhaustion and I know this has played a role. My doctor feels this is the reason I haven't been able to pull out of it. Between all of the "stuff" this detox is bringing out and my exhausted adrenal glands; my body is just too taxed to deal with it all. Overwhelmed. Too much physical and biochemical stress. Needless to say, everything else is on hold for now.

On a side note, I found an excellent book by Dr. James Wilson, ND, PhD, entitled Adrenal Fatigue: The 21st Century Stress Syndrome. Clearly there are different kinds of stressors, which all stress affects the adrenal glands, but in speaking about chronic illness Dr. Wilson stated, "The more chronic the illness, the more critical the adrenal response becomes." That is a profound statement and I think it's something we all need to be aware of. After 20 solid years of this chronic debilitating illness, I know my adrenals are in serious need of attention.

Also of note is that Dr. Wilson says infections, particularly respiratory infections, are especially draining on the adrenal glands. He says the more chronic an infection is, the more taxing it becomes on adrenal function. And it's cumulative. He also says if pathogens (disease causing bacteria, viruses, parasites, etc,) are present in the body, they must be dealt with first before proper function of the adrenal glands can be fully restored.

Well this is really the Catch-22 for those of us with chronic Lyme (and other co-infections). As it stands, Borrelia (Lyme bacteria) is not a pathogen that can be eliminated from the body. Regardless, I believe doing everything I can to help my exhausted adrenal glands is vitally important. But my adrenals aren't the only thing that's exhausted. My whole body is exhausted. I. Am. Exhausted. This disease itself is physically exhausting. Working your butt off for twenty straight years to be well, doing anything you can, is also exhausting; in every way. I don't even have words for it all anymore. And let me just say if you haven't been here then you cannot understand the depths of this.

I've been on basic adrenal support in the past but am now on a more comprehensive support. The foods we eat can also play a big role in helping our adrenal glands heal and Dr. Wilson discusses this at length in his book. Even the times we eat can either be beneficial or detrimental to our adrenal function. I believe in eating whole, healthy foods anyhow, so I'm really focusing on this as well. And while I felt better for almost two weeks after beginning the adrenal support, I've started feeling badly again recently. It's the crazy roller coaster ride that never lets you get off.

For years, this has been how my body responds to anything new. Feel better at first and then crash and feel like crap again. An immunologist my doctor consulted with last year said this is a sign of severe immune imbalance. He said a Lyme infection plays havoc on the immune system; especially when it's long term. His exact words: "Long term Lyme infections confuse the immune system to such a degree that it causes it to lose its intelligence." If you're interested in reading more about this go here.

We've been working on correcting this immune dysfunction for over a year. It can get so frustrating and discouraging when working so long and hard to correct something but not seeing big changes. That's not to say my immune system isn't functioning better on some level; it is. However, I still have an immune deficiency. Interestingly though, our adrenal glands have a direct affect on the overall efficiency of our immune systems. So knowing what I do now, I'm thinking my adrenals have played a role in this as well. Perhaps that's an overlooked key. And perhaps this would also explain my struggle to fully recover from a major respiratory infection I had back in 2012. I seriously hope healing my adrenal glands will also help balance and improve my immune function more. I suppose like everything else in working to physically heal, especially where the Lyme complex is concerned; it's a process.

I don't feel well enough to write anything more but given this beautiful season we're in, and because I always try to find something beautiful in the midst of this mess, I wanted to share a post from my other blog, The Ragamuffin Saint, that I wrote three years ago entitled, The Blessings of Autumn. I so love fall and wish I could get out more to enjoy it. I do have a great view from my bedroom so that is a blessing to my soul. And I try to get out on our deck with some hot tea to take in the beautiful landscape and breathe in some crisp fall air. I hope you enjoy the post and photos from October 2011; especially if you can't get out. Believe me, I understand. May it bring a smile to your face and leave your heart warmed with some of the beauty of fall.

~ Michelle

The Blessings of Autumn

Keep Dreaming, Friends

Even though this journey is long and hard -
Don't give up.

Don't quit.

Keep hoping.

Keep believing.

HOLD ON TIGHT TO YOUR DREAMS.

They are worth it, and so are you.

With love and hope,

Michelle

Welcome To The Truth About Lyme Disease

Perhaps I should say welcome to the truth about Lyme disease as I see it. I've wanted to write this so many times I've lost count, and I have struggled with doing so for many reasons. First off, it's a huge undertaking. The truth of Lyme disease is no small thing, nor is it for the faint of heart. Moreover, I don't have the amount of energy I think it takes to do it complete justice. Then again, could any length of writing really do that? Honestly, this could go so many ways. I start to think it might just be better to write this thing freestyle. Whatever comes out, comes out. You know, Que sera, sera. But I don't want to come across in the wrong way either.

Do you see a dilemma forming here?

Having said all that, I think it's better to go for it than leave it all unsaid. I have experienced my share of being misunderstood, so what the heck.

I know and respect that each person's experience is unique. Clearly, there have been many already who've addressed this topic in a variety of ways, probably better than I can. So while this is in no way a comprehensive piece on the truths of Lyme disease; it is from the heart. And the gut. And the funny bone.

I've written about Lyme in myriad ways before, so I'm going to try this from a more distinctive point of view. Perhaps quite different from how I usually write. It might work; it might not. Maybe this whole thing will only make sense to those of us with Lyme, and maybe this won't make any sense period. Nevertheless, here goes.

Lyme disease can be your worst freaking nightmare.

How's that for an introduction?

Lyme, and other tick-borne infections, can be easy to get but difficult to treat. Mainstream medicine tells people the opposite. I'm telling you that thousands of other Lyme sufferers and I can't all be wrong.

When Lyme goes undiagnosed, misdiagnosed, and/or untreated, it only allows the bacteria to spread and entrench itself deeper within tissues and cells. That's why if left unabated over time, the whole body often becomes involved, including major organs like the brain, heart, and liver.

If caught early, it can be treated pretty successfully without complications, however, here's another problem - many people are carrying the Lyme bacteria around in their bodies and don't even know it. That is until their immune system gets taxed by some serious stressor like an infection, surgery, significant life change, loss, death of a loved one, or some other type of physical or emotional trauma. Then it can rear its ugly head seemingly out of nowhere.

For me, it was after having an oral surgery, which later turned into having two more subsequent surgeries due to complications. After having three oral surgeries, two within a year, you bet my immune system was down. I've never felt the same since that initial one; it was the beginning of what later became a 16-year diagnostic nightmare for me. And now, 20 years later, here I am. Still working to heal and recover from what we now know is chronic Lyme disease. Misdiagnosis was a big issue for me. My story is reflective of so many other people's stories, and vice versa.

The truth is, it isn't only about the Lyme bacteria (Borrelia, of which there are various strains) when dealing with a long term or chronic Lyme infection. There are many factors involved, which is why it is more appropriately referred to as the Lyme Disease Complex. Also, other co-infections, immune suppression, systemic inflammation, genetics, methylation, toxicology, trauma, nutritional deficiencies, detoxification, etc., are all critical issues that must be addressed. Furthermore, we each have unique biological makeups, and that means we all respond differently to things, including treatments. There is no one size fits all treatment. I personally believe we each need individualized treatment protocols.

Integrative medicine physician Dr. Isaac Eliaz, MD, MS, LAc, recently wrote an article on Huff Post Healthy Living entitled, The Truth About Treating Lyme Disease. It's a really good piece regarding the truth about the Lyme complex and his holistic overview of what successful treatment must include. He also does a great job of conveying the difficulties of treating this complicated disease complex; it's not so simple. He emphasizes that it takes time (don't we know it). And he also encourages there is always hope for improvement (totally agree). It's worth taking the time to read, especially if you or a loved one has Lyme.

And do you honestly want to know how we feel about Lyme?

We hate it. It makes us want to puke. In fact, some people with Lyme do puke.

On a scale of 1-10 (with one being the worst and ten being the best), most all of us at some point have been at 1 and 2 for months and years. Many of us have made some improvements but are fortunate if we can get to a 5 or 6, even after working long and hard through various treatments. It seriously takes a great deal of time to work through this complex healing process.

Some people are never the same, and some people don't make it.

It feels like living in an ongoing episode of The X-Files. You know, where the truth is out there but is always elusive, suppressed, and concealed. It's where the ones who really know the truth, and are willing to go out on a limb for it, are usually portrayed in a poor light.

Remember Fox "Spooky" Mulder?

Yeah, now he knew the truth. He wasn't crazy; he was sharp, brilliant, actually, and he was a threat because of it. He lost a lot, but he kept on working hard and pursuing what he knew was right, despite having to fight the system and all the players in it; despite getting discouraged at times; despite almost quitting, more than once, I might add.

You see where I'm going with this?

Symbolism is a great tool. Please, don't ever give up, Lyme friends. Let's hold on and keep believing together, okay?

By the way, I've often wondered if those "designer bees" from The X-Files movie, the ones housed in massive domes out in the middle of nowhere amongst all the random corn crops, held the real cure for Lyme.

Uh, huh.

Maybe we should consider starting The L-Files.

Seriously though.

We work our butts off every single day to be well. Or at least work towards some type of improvement on some level, any level.

We're not on some extended hiatus having the time of our lives because we "get to stay home."

Really?!? 

Does anyone actually think that?

They must because you'd be shocked at some of the responses many of us have gotten from people. Not all people, but some people. How shall I put this? Some people say the most ridiculous, insensitive things, it's almost comical. 

I said almost. 

It's not very comical when you're on the receiving end and don't physically feel well or are in a great deal of physical pain. Or when you're so profoundly fatigued, you can hardly breathe, much less move. Or when you've lost so much along the way but nobody can see it; perhaps they don't want to.

The effects of Lyme disease on real lives create tremendous suffering in the body, soul, and spirit.

It hits wallets and checkbooks pretty hard too.

I've said this many times before and have certainly learned it's very true: no one can fully understand the depths of something they've never experienced themselves. This is true of many things in life, including chronic illness. I'm specifically referring to Lyme disease here because that's what I've lived with for so long, and that's what has turned my life entirely upside down like it has so many others.

We're all sicker than anyone really knows or understands. Still, when others ask us how we are, we've learned it's usually a lot easier NOT to go into detail. That's mainly because a lot of people just don't understand. We're not faulting them. As I said, no one can honestly understand this if they've not lived it. But it is less frustrating and draining for us than having to deal with some of the looks, the rhetoric, and the casual, sugarcoated responses we so often get.

Hey people, this is not Candy Land, OK? Or should I say Candy Crush? 

Um, yes. We're STILL in treatment. I'm sorry that's hard for you to grasp; try living with it. We know with all the remarkable technology of today, there should be premium testing and perfect treatments available. Maybe in Candy Crush Saga that would exist, perhaps for Tiffi and Odus the Owl, but not in Lyme land. X-Files. Remember?

And yes, it can take years to make headway with this. We deal with it every single day.

Some days we're up, and some days we're down. Other days, however, we park it in the middle and can't budge.

Some days we laugh. Some days we sigh. And some days we just sob our guts out.

Some days we are hurting. Some days we're scared. Some days we're frustrated. Some days we're weary of it. And some days we want to scream our guts out.

Some days we DO scream our guts out, which usually scares the cat, the dog, and/or the neighbors, but hey, it sure makes us feel better.

Some days this is all so absurd and surreal, we just shake our heads. Like a lot. Some days it's so weighty and severe, we don't really know what to do with it. And some days we're so dang sick, fatigued, and debilitated, we can't care about anything else.

Some days we light up. Some days we crank it like a chainsaw. And some days we totally crash.

Some days we long for the life we once had. Some days we dare to dream big for the future. Some days, we feel completely lost and alone in it. And then some days, it feels like this will never end.

Some days we feel like we got the boom. Some days we fall down and go boom. And some days, we feel like the boom done went and left.

Some days we raise the music through the roof and don't want to talk to anybody about anything. As in, Shut up, my favorite song is playing! Some days we can't stop talking about it. Some days we want and need silence. And some days we're so tired of this whole mess, we try and pretend it doesn't exist anymore, but that usually doesn't last very long.

Some days we feel like we can see some light at the end of the tunnel. Some days that light gets brighter. And some days, the light seems to have disappeared.

Some days we express words we didn't even know were buried deep within us. Some days we have no words whatsoever. And some days, we write really long, eccentric blog posts.

Welcome to the truth about Lyme disease.

~ Michelle

PS: No animals, neighbors, or ticks were hurt in the process of writing this truthful but off the wall piece about one of the fastest spreading, most serious infectious diseases today.

Although, I did heavily mix rock, electronica, hip-hop, singer-songwriter, and folk music together during the writing process. AND, I had a homeopathic cocktail chased minutes later by a tall hot green tea. AND, I was texting my nephew about new kicks (not to be confused with new ticks), swimming, and black eyes. Otherwise, nothing eventful took place.

PPS: Take a deep breath.

PPPS: Actually, I wouldn't mind taking out a few punk ticks.

PPPPS: We all share commonalities, but truly, our stories are unique. And your story matters, friend. Don't be afraid to share it. Someone somewhere needs to hear it. Welcome to the truth, indeed.

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