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

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

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

I recently came across this fantastic excerpt written by Lyme researcher and lecturer, Thomas Grier, M.S., who was misdiagnosed with M.S. for years when he had chronic relapsing Lyme disease. Sounds familiar to many of us, I know. He is now the Executive Director of Pathology Studies at MIBDEC (Minnesota Insect-Borne Disease Education Counsel), a non-profit organization. He has a background in microbiology and immunology and continues to do research in both the Lyme and M.S. communities. 

The article is so long that I'm breaking it into parts and using excepts that might not be as well known or understood. I found it extremely interesting. While I already knew some of the basic information; it truly helped me better understand the complexities of Borrelia (Bb) and its effect on and within the human body. I felt the need to share it.

Perhaps some of you are familiar with Grier and/or his work. I had previously read his personal story a couple years ago but never knew he had written the manual (Lyme Disease Survival Manual) this excerpt is taken from. 

I'll post Part 2 in a week or so but I've included a link to the full article at the end of this post for those who want to read it in it's entirety now.    ~ Michelle

Excerpts from The Complexities of Lyme Disease 

by Thomas Grier, M.S.

Why is Lyme disease such a mystery? Why does it mimic so many other diseases? Why is it so difficult to detect? The reasons come from the microbiology of the bacteria that causes Lyme. This paper will look at the biology of this bacteria and the consequences of the organism's unique microbiology on human victims.

Lyme disease is caused by a spiral-shaped bacterium known as a spirochete. Diseases that are caused by spirochetes are notorious for being relapsing in nature, difficult to detect, and great imitators of other diseases. Syphilis, Tick-Borne Relapsing Fever, and Leptospirosis are other examples of spirochetal diseases. Lyme disease is caused by a bacteria called Borrelia burgdorferi, named after the man who isolated it from a Deer Tick in 1981, Dr. Willy Burgdorfer. The following is a tutorial to help explain away the mysteries of this bacteria, and why it causes so much controversy between patients and the medical community.

The Structure of the Lyme Bacteria:

The structure of the Lyme spirochete is unlike any other bacteria that has ever been studied before. It is one of the largest of the spirochetes (0.25 microns x 50 microns). It is as long as a fine human hair is thick. Borrelia burgdorferi is a highly motile bacteria. It can swim extremely efficiently through both blood and tissue because of internal propulsion. It's propelled by an internal arrangement of flagella, bundled together, that runs the length of the bacteria from tip to tip.

Like other Borrelia bacteria, Borrelia burgdorferi (Bb) has a three-layer cell wall which helps determine the spiral shape of the bacteria. What makes this bacteria different from other species is that it also has a clear gel-like coat of glycoproteins that surround the bacteria. This extra layer is sometimes called the Slime Layer or S-layer.

This means: This extra layer of glycoproteins (exaggerated in thickness here) may act like a stealthy coat of armor that protects and hides the bacteria from the immune system. The human immune system uses proteins that are on the surface of the bacteria as markers and sends attacking antibodies and killer T-cells to those markers called outer surface protein antigens (OSP antigens). This nearly invisible layer is rarely seen in washed cultures but can be seen regularly in tissue biopsies.

The Lyme bacteria is also different from other bacteria in its arrangement of DNA.

Most bacteria have distinct chromosomes that are found floating around inside the cytoplasm. When the bacteria starts to divide, it forms a new cell wall in the middle and begins to split in two. The chromosomes also divide, and the new copies of the chromosomes enter the new cell. The arrangement of DNA within Borrelia burgdorferi, however, is radically different from other bacteria. It is arranged along the inside of the inner membrane of the cell. It looks something like a net embedded just underneath the skin of the bacteria.

This means: We really don't understand the mechanisms of how Bb regulates its genetic material during its division. The bacterial DNA is uniformly embedded inside the inner membrane of the Bb bacteria, like nylon stocking.

Another unique feature to Borrelia burgdorferi are Blebs. This bacteria replicates specific genes and inserts them into its own cell wall, and then pinches off that part of its cell membrane and sends the Bleb into the host. Why it does this, we don't know? But we do know that these blebs can irritate our immune system.

Dr. Claude Garon of Rocky Mountain Laboratories has shown that there is a precise mechanism that regulates the ratio of the different types of blebs that are shed. In other bacteria, the appearance of blebs often means the bacteria can share genetic information between themselves. We don't know if this is possible with Borrelia species.

There have been reports of a granular form of Borrelia, which can grow to full size, fully autonomous spirochetes and can reproduce. These granules are so small that they can be filtered and separated from live adult spirochetes by means of a micropore filter. The granular/spore form of Borrelia burgdorferi is still being debated. (Stealth Pathogens Lida Mattman Ph.D. 66, Phillips/Mattman 98, Preac-Mursic)

The division time of Borrelia burgdorferi is very long. Most other pathogens, such as Streptococcus or Staphylococcus, only take 20 minutes to double. The doubling time of Borrelia burgdorferi is usually estimated to be 12-24 hours. Since most antibiotics are cell wall agent inhibitors, they can only kill bacteria when the bacteria begins to divide and form new cell walls.

This means: Since most antibiotics can only kill bacteria when they are dividing, a slow doubling time means less lethal exposure to antibiotics. Most bacteria are killed in 10-14 days of antibiotics. To get the same amount of lethal exposure during new cell wall formation of a Lyme spirochete, the antibiotic would have to be present 24 hours a day for 1 year and six months!

If a bacteria is in a non-metabolic state (dormant), no antibiotic is effective. To be lethal, the antibiotic must be absorbed and processed through the bacteria's metabolic machinery and cause a disruption of metabolism.

Unlike antiseptics, antibiotics don't kill on contact. If there are any dormant bacteria hidden in sequestered sites, then regardless of the length of treatment, antibiotics can fail until the bacteria become metabolically active (The Forgotten Plague see reference to Tuberculosis).

Like other spirochetes, such as those that cause Syphilis, the Lyme spirochete can remain in the human body for years in a non-metabolic state. We know this because patients with ACA rash for years are often culture positive when the skin is biopsied and cultured. Non-metabolic bacteria is essentially suspended animation. The bacteria does not metabolize in this state. Antibiotics are not absorbed or effective. When the conditions are right, those bacteria that survive can seed back into the bloodstream and initiate a relapse. It is a beautiful and patient survival mechanism.

This means: Just because a person is symptom-free for long lengths of time doesn't mean they aren't infected. It may simply be a matter of time before the re-emergence of the sequestered non-metabolic bacteria. Whereas viral infections often impart a lifelong immunity and may suppress subsequent relapses or reinfections, Lyme, like other bacterial infections, does not impart an active immunity for a long period of time. People are often reinfected with Lyme. A relapse of symptoms could actually be thought of as reinfection or a reseeding of infection from immune-privileged sites.

The Lyme spirochete has a sequence of surface antigens it can choose to express or not express. There are more than two dozen species of Relapsing Fever Borrelia bacteria that have been clearly identified. We are now beginning to see a similar diversity within the Lyme spirochete family as well. Polymorphism, which is the ability of the bacteria to change its structural identity, makes recognition and identification more difficult. It is like a criminal putting on a new disguise after every time he has committed a new crime.

While there are four generally accepted genospecies of Lyme disease - Borrelia burgdorferi, Borrelia afzellii, Borrelia garinii, and Borrelia lonstarrii - there are hundreds of identified strains of the first three species. Borrelia spirochetes are polymorphic because they have built-in genetic mechanisms to vary their antigens.

This means: Just as the immune system recognizes the bacteria and tries to kill it, the bacteria changes its clothes and fools the immune system, and survives a little longer. Soon the bacteria finds safer areas of the body to hide in, and the immune system stops looking for it. But another aspect of polymorphism is that once the cell changes, it may become even more lethal to some cells. For example, when Borrelia burgdorferi was introduced into the mouse via the bloodstream, the bacteria traveled to the brain. But the bacteria recovered from the brain was more adapted to the brain and could no longer be killed from antibodies in the bloodstream. Polymorphism is a clever way to survive and may offer reasons for multiple symptoms.

The Complexities of Lyme Disease (A Microbiology Tutorial) By Thomas Grier, M.S.

Borrelia burgdorferi (Bb) bacteria (spirochetes) magnified using dark-field microscopy.

The Healing Files: Music

What an amazing gift God has given us in music. Not only is it enjoyable, but music can calm, soothe, lighten, encourage, motivate, inspire, and in my opinion, facilitate healing. It is certainly a part of my healing protocol.

Music is a powerful expression and can uniquely do what nothing else can. It's been said that music is what feelings sound like. It has also been said that music speaks when words cannot, and I believe this is true. Music often moves us in emotion and can evoke memories. 

Music can have stress, anxiety, and pain-reducing effects as well. Numerous studies and scholarly articles document the therapeutic and biological effects of music, specifically on our nervous, immune, and endocrine systems. This is particularly interesting to me in working to heal from Lyme disease and subsequent co-infections.

Quantum Physics tells us that healthy cells vibrate in the body at a much higher frequency than unhealthy or toxic cells. I believe the vibrational frequencies within musical notes resonate with and influence the frequency that our cells vibrate at. In other words, it is possible to change the vibrational frequency of our cells through music (as through other modalities as well). This can have a positive effect on us or a negative one. If we listen to music (lyrics included) that is dark, negative, derogatory, or harsh, it can impact us and our cells in that same unhealthy way. Equally, if we listen to music that is soothing, encouraging, uplifting, motivating, or healing, it can impact our cells in this way as well. 

Melinda Bargreen, Music Reporter for the Seattle Times, wrote an interesting article in 2001 entitled, Classical Muisc Lovers May Indeed Have More Brains. In it she states: "Brain research suggests that playing Mozart, that same composer responsible for the much-touted "Mozart Effect," in which performance on certain aspects of IQ tests was improved following exposure to his music" can also have a beneficial effect on epilepsy patients. John Jenkins of the University of London has found that playing "short bursts of Mozart's Sonata K.448" (the D Major Sonata for Two Pianos) decreases epileptic attacks. Other studies suggest that Mozart also has a beneficial effect on coma patients.

Educators have long observed the benefits of early musical training on school performance. Various studies have shown that some areas of the brain are enlarged among those whose "perfect pitch" facility is revealed in that early training.

More recently, the American Academy of Neurology has released the results of a study that found "significant differences" in the gray-matter distribution between professional musicians trained at an early age and nonmusicians. The musicians in the study had more relative gray-matter volume in five regions of the brain and "pronounced differences in the cerebellum bilaterally." http://www.rense.com/general12/morebrains.htm

There are many Scriptures in the Bible that reference music. It was used in biblical times to celebrate, exhort, and comfort. 1 Samuel 16:23 says, "And whenever the tormenting spirit from God troubled King Saul, David would play the harp. Then Saul would feel better and the tormenting spirit would go away." Music was also frequently used in praise and worship to God during the Jewish Feasts and celebrating marriages and battle victories. So it is today. Music is apart of our everyday lives, i.e. weddings, funerals, holidays, concerts, graduations, birthday parties, church services. And we, too, use music as an expression of our gratitude and worship.

Most likely, we've all experienced some kind of positive effect from music in one form or fashion. I listen to music most everyday unless I'm feeling really bad but even then; I'll often listen to soothing instrumentals or soft classical. My iPod is loaded with playlists to aid me in my Lyme treatment. Some days I need songs that spark motivation; other days I need songs that comfort and speak hope to my heart. Whatever it is, I can attest that music has been very therapeutic for me throughout my life and most certainly now during this treatment protocol. I think it's an excellent adjunct therapy for anyone whose working towards healing and wellness.

Michelle Holderman
Copyright © 2011

Photos: Favim.com

30 Things About My Illness You May Not Know

I'm joining a wonderful blogging campaign for National Invisible Chronic Illness Awareness Week, sponsored by Rest Ministries. I appreciate you taking the time to read my blog. If you'd like to know more, please check out: http://www.invisibleillness.com/.

1. I live with chronic Lyme disease, but this answer did not come easily. Can anybody say diagnosis nightmare?! Like many others, I've been through the gamut of diagnoses over the years. To better understand my personal story, you might consider reading the post preceding this one entitled, Journeying Through Chronic Illness. 

2. I've actually had symptoms since 1992. But everything escalated after having oral surgery in 1994.

3. I was 24 when I first became ill. I'm now 40.

4. The biggest adjustment I've had to make is learning how to live with and manage physical limitations.

5. Most people assume if I'm out, I must be doing fine. That's not true. I do have some days I feel relatively good, but it can change in a matter of hours or from day to day. Most days, I don't feel well at all, and a lot of days are just plain bad. I'm hoping this will change as we work through a new treatment protocol I'm on, especially since we now know what's really been going on all this time!

6. If I'm not feeling well when I first wake up, I know it's going to be a bad day. If I am feeling reasonably good, however, mornings can be the time of day when I have more energy than afternoons. I tend to get more fatigued and run a fever as the day goes on.

7. My favorite medical TV shows are ER, China Beach, Emergency, and Hawthorne.

8. An electronic gadget I couldn't live without is my iPhone. I especially like it when I'm not feeling well. I can listen to music and access email, FB, Twitter, and other apps, all from bed. Even though I use my laptop regularly, it's just too big to deal with when I'm feeling bad. That's when my iPhone really makes the difference for me.

9. Sometimes, people just don't understand. And sometimes, people say the wrong things. These are two things I've had to both accept and make peace with. And while this is true of life in general, it is amplified in chronic illness. This was much more difficult early on in my illness, but there are still those occasions when it stings a bit. I truly believe most people mean well; they just don't understand the complexity of living with chronic illness, pain, and/or disability.

10. The number of pills I take daily varies. I use homeopathic medicines, which are liquid, so I add so many drops to my water and drink or take them straight by mouth. My herbal and nutritional supplements vary. Some are liquid also. Presently, I'm taking 4 pills a day.

11. I like and benefit very much from using alternative medicine and therapies. I spent several years using prescription medications but have found a great deal of help through natural and alternative means. I believe everyone has to find what they feel is best for themselves and certainly what works. My physician is a Naturopathic Doctor. I have Massage Therapy and other bodywork regularly. Epsom Salt and aromatherapy baths can help ease muscle and joint pain and greatly help with detoxification. I've also found eating whole nutrition is extremely important. So I eat a very healthy diet, which initially stemmed out of necessity, but I feel better when eating whole, nutritious foods.

12. My wheelchair is the most tangible, visible part of my illness, and that's what people always go to. But it certainly isn't the only part. Clearly, not being able to walk is a huge deal! However, it is one obvious reflection of many invisible aspects of this illness. I pray for the day, and this is my faith speaking when I am well and will no longer need to use this wheelchair. I'll be thrilled to become totally invisible in that sense!

13. I haven't been able to work in my chosen profession for many years now. It took me quite a while to accept that. You know - one more thing I had to give up. But I truly believe God has other plans for me.

14. People would probably be surprised to know that I play the drums :)

15. Some of the hardest things to accept about this new reality have been the many losses and limitations with chronic illness and disability.

16. My illness actually opened the door for me to speak to nursing and radiology students at a local college about my perspective as a healthcare professional and a patient. Based on my own experiences, I created scenarios for the students to assess how they would potentially respond. We then had open discussions about it, and many of them began to share their own personal stories. It was a really great experience for me, and I hope it was for them as well.

17. I am thankful for the good days or moments I have, even if they are few and far between. Living with a chronic illness and disability has undoubtedly brought a whole new and unique perspective of life; it has been a teacher in many ways.

18. Some of the things I really miss doing since being chronically ill is having the stamina and energy to go out shopping with my Mom and run around all day, i.e., shopping, having lunch, shopping some more, having coffee, etc. I miss going on vacations too, which require energy and money. Mostly it's the simpler things I miss, like taking a walk in the woods, especially in the fall. Being able to walk and run with my nephews. Or being able to indulge in something sweet without repercussions.

19. It's difficult to fully express the deep struggles of living life with a chronic illness. One mourns for the physical losses that accompany disease and the loss of friends, jobs, lifestyles, etc. One thing that was really hard for me to give up was my total independence. Thankfully, I'm still independent in some ways. This has come through making our home more accessible and by investing a great deal of hard work into physical therapy, being devoted to working with my doctor, and sticking to my diet and treatment regiment. It's certainly not been easy, and it's certainly not been fun, but through it all, I've learned a lot about trusting God and how to depend on Him and others.

20. A new and serious hobby I have taken up since my illness is photography. And interestingly, I've found the view of the world around me is literally different because of my being forced to slow down and sit down. I catch things around me that others can sometimes miss.

21. If I could have one day of feeling normal again, I would want to spend it with my family enjoying copious amounts of carefree fun at the beach. I want to run with my nephews into the ocean! If not at the beach, then at home grilling out, riding four-wheelers, walking in the woods, running and playing with my nephews, building a bonfire, roasting marshmallows to make smores, etc. I would truly savor having an abundance of energy, feeling good, and being able to move around freely without limitation.

22. My illness has taught me much about patience and perseverance. I've learned a great deal about God, trusting Him, and truly learning to walk by faith and not sight. Not an easy lesson. I've learned a lot about myself and about health and nutrition. I've learned to recognize and appreciate small joys in life; they really do keep you going. I've learned carrying a dream in your heart is essential to survival. And I've also learned the one thing this illness cannot take away from me is my identity in Christ.

23. One frustrating thing is the many pat responses I've gotten from people." But you look good!" or "It can always be worse, can't it?" or "If anybody could do this, it's you." I realize others cannot automatically know the ins and outs of living daily with a chronic illness and disability. Still, it can be frustrating to be told how good I look when I've just come out of 3 weeks of feeling my absolute worst. And clearly, I know things can always be worse, but it doesn't change my present circumstances. As for the last one, what choice do I have? I find those who have understanding usually do so because of dealing with an illness themselves or having experienced it through someone they love.

24. I like when people will address my illness and disability and not talk around it. I find children are refreshingly open and honest about such things. I welcome their curiosity and questions. My nephews have asked me many questions about why I can't walk and why I have to rest. They're certainly not intimated by a wheelchair. I also like when people will look me in the eye and acknowledge me. There have been many times over the years when I've been out in public and had someone turn away from me or direct conversation to my mother or whoever I was with. I now realize that has more to do with them than with me. Still, it doesn't feel very good. Conversely, there have been those who have gone out of their way to hold open a door, say hello, offer a smile, or strike up a conversation. So there really are some kind, thoughtful people in the world, and they far outweigh those who are not.

25. Some of my favorite quotes and/or scriptures that get me through tough times are: 

Psalm 34:18 "The Lord is close to the brokenhearted and saves those who are crushed in spirit" (I find a lot of solace in reading the Book of Psalms).

"...Being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus." Philippians 1:6

"Trust in the Lord with all your heart; don't lean unto your own understanding. In all your ways, acknowledge Him, and He will direct your path." Proverbs 3:5-6

"So do not be afraid, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

"Hope knows that if great trials are avoided, great deeds remain undone, and the possibility of growth into greatness is aborted." - Brennan Manning.

"Never, never, never give up." - Winston Churchill.

"Sometimes God allows what He hates to accomplish what He loves." - Joni Eareckson Tada.

"It's not whether you get knocked down; it's whether you get up that matters." - Vince Lombardi.

26. If someone has been diagnosed with a chronic illness, I'd like to tell them to not compare where they are and how they feel with someone else; we all deal with this differently. I'd say it's alright to feel those roller-coaster emotions - scream, have a good cry, talk to a trusted friend, rip the newspaper to shreds or blast the music really loud; whatever helps. I would tell them to look to God for strength and hope. I'd also add that questions or struggles with faith are common in chronic illness, but they do not necessarily equal a loss of faith; it's okay to work through that. Don't be afraid or embarrassed to reach out and seek help when you need it. And I'd also say find a great online support system or resource like Rest Ministries; it can make a huge difference to connect with others who relate to what you're going through.

27. One surprising thing I've learned is that chronic illness is not simply black or white but many shades of gray in diagnosing, treating and living with it. And it affects the whole family, emotionally and financially. My brother once said to me, "Michelle, while this is physically taking place in your body, it's happening to all of us." I've never forgotten that. And it's true.

28. Someone doing something nice for you means a lot anytime, but that's certainly true when you're chronically ill. My Mom, my caregiver, does nice things for me regularly; they're just too numerous to mention.

Several years ago, before having to quit work, a close friend of mine came to my house and wrapped ALL of my Christmas presents for me because I was not feeling well enough to do it. Very nice.

A sweet friend of my grandmother's use to send me notes and cards every week. She did this for many years before she passed away. She would often just write something very simple but meaningful. Very nice. And speaking of my grandmother, she, like my mother, did so many nice things for me while she was alive. She would often make me homemade meals and goodies that only she could. Mostly, she and my grandfather would come to visit me every Sunday afternoon. I enjoyed spending that time with them. I love and miss her very much!

29. I'm involved with Invisible Chronic Illness Week because I want to put a face to what living life chronically ill is really like and help others understand that a lot of the suffering of chronic illness and pain is not often visible to others. Also, I want to share hope and support with those living with chronic illness and/or pain. Even though many days are hard, and even though some days are beyond brutal, you can get through it with God's help and the love and support of family and friends.

30. The fact that you took the time to read this list makes me feel you're interested and care. And for that, I say a deeply heartfelt thank you!

Journeying Through Chronic Illness

I'm going to share some important news I have been seeking out for many years now. Ironically, I'm doing it preceding the national campaign for Invisible Chronic Illness Awareness Week (September 13-19, 2010). I honestly had no idea it would unfold like this, but that's just like God to set things up in this way.

Most of my family and friends know I've been chronically ill for the past sixteen years. What some might not realize is just how debilitating this illness is and how difficult it's been to find an accurate diagnosis. I've been told a lot of things through the years. I've been to a lot of places. I've gone through a lot of testing. And I've been through a lot of trial and error; so very up and down. It's been complicated, overwhelming, frustrating, draining, and disheartening.

Throughout the years, I've actively searched for the actual cause of this illness, even up until now. I've encountered some of the best and some of the worst that our healthcare system offers. That in itself forced me to change my thinking and make subsequent adjustments. And I thank God for it. For the past year, my doctor and I have pursued what we now believe to be the true root of this illness that has so changed my life and my family's life.

It is with a mixture of relief and reservation that I share this with you. I mean, this is the past sixteen years of my life briefly stuffed into this one tiny blog post. It feels rather peculiar to try and put something so profound as this into a few words. And it's bittersweet, too (if you're chronically ill and searching for answers, you know exactly what I mean). Honestly, I have wrestled with writing this, but I’ve earnestly felt the Lord nudging me to do this, so here it is.

I have chronic Lyme disease.

This implies I have had Lyme disease for a long time, and it's true. Longer than anyone really knew. I was misdiagnosed many years with MS and Chronic Fatigue Syndrome. But before that, some doctors found that I had several chronic viral and bacterial infections (EBV, CMV, VZV, Strep, etc.). Before that, I had been diagnosed with Post-Viral Demyelinating Syndrome, Chronic Mono, Transverse Myelitis, Primary Lateral Sclerosis, Vestibular Neuronitis, Optic Neuritis, and Migraine Variants secondary to MS, among other things.

All along, however, it's really been Lyme disease and secondary infections. 

Yes, it's left my head spinning too.

Lyme disease is called "The Great Imitator" because it can mimic many other diseases, leading to improper and delayed diagnosis. This is what’s happened to me, and it happens to many others as well. It is a very complex, multi-systemic infectious disease that is caused by the bacteria, Borrelia burgdorferi. When left untreated, Lyme can and will disseminate throughout the body and cause significant problems—so it's been with me.

As many of you who live with chronic illness surely know, my story isn't simple. I couldn't possibly address the myriad struggles that have occurred. I want to share some of the invisible aspects of my illness, which is what Invisible Illness Week is really all about - bringing awareness to the fact that much of the suffering of chronic illness and/or pain isn't always visible to others.

Let me first say the most tangible and visible aspect of this illness is clearly my wheelchair. But what a lot of people don't really know is why I am in a wheelchair. And that brings me to some of the not-so-visible parts of this illness.

Chronic Lyme disease has greatly affected me neurologically, commonly called Neuro-Lyme or Late Stage Lyme Disease. I have weakness in my legs, which really stems from inflammation and damage to my nervous system. But you can't "see" that. I've had many problems with neuropathies, paresthesias, balance, disequilibrium, and gait. These are the primary reasons I've been in a wheelchair for thirteen years.

But there's more to this illness. Deeply profound chronic fatigue. Recurrent low-grade fevers. Muscle and joint pain. Chronic sore throats. Headaches. Light Sensitivity. And on and on it goes; so much is involved. I really can't express how debilitating the fatigue and fevers are on many days; it's so very draining. My immune system has been damaged as well. Co-infections and secondary infections are common in chronic Lyme because of this, so it is for me. The bacteria that causes Lyme has also affected my heart, liver, and spleen. You can't tangibly see much of that, either.

What can be seen are the effects of it, but they're not always recognized, and while this might all seem random in how my physical body has been affected, it is the very essence of chronic Lyme disease. It has answered many of the plaguing questions we've had about the complexity of this debilitating illness throughout the years.

For me, the good news is in finally knowing what I'm dealing with. I can't tell you how frustrating it is to not know what's really going on when something clearly is. And after so long, you just want answers, no matter what they are.

I recently began a treatment protocol for CLD. So this is all very fresh and emotional. I didn't just settle for the possible or probable. Instead, I've prayed and fought long and hard for true answers. It's still an ongoing battle, but I know better where I stand now. 

I will say that living with chronic illness is akin to experiencing, as the old Crowded House song goes, four seasons in one day—it's that overwhelming a lot of times.

As I close, I must say that my faith in Jesus plays a huge role in my life and, therefore, in this illness as well. I cannot separate my faith from any aspect of living, including Lyme disease. My relationship with Jesus is what has ultimately sustained and preserved me. And I must also tell you that I've come to know Him in a much deeper and more personal way through all of this crazy mess.

The love and support of my family, close friends, doctors, and therapists have been a tremendous blessing. There's no doubt about it; you must have tangible, present help when chronically ill. 

To my dear Mom—thank you from the bottom of my heart for all you've done for me over the years!! 

Throughout all of these long and difficult years, she has been my caregiver and cheerleader, and I cannot possibly express the depth and impact her ongoing love and support have made on me. I really don't know where I'd be without her.

Although this is a really hard and lonely journey that is so often misunderstood, and although physical healing has not yet come for me, I truly believe something will be birthed out of this pain and suffering, which is why I often refer to it as “a beautiful mess.” In some small way, it already has, but I do believe there's more to come. 

In the meantime, I’d truly be honored if you follow along with me on this Lyme journey. Oh, and welcome to My Lyme Symphony, where I’ll be writing and documenting this whole process.

Stay tuned, friends.

Michelle

Immune Recovery Clinic 

Atlanta - 2003

Michelle Holderman

Copyright ©2010