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The Pain of Lyme

4/22/2015

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The Pain of Lyme by Elizabeth Galen, Ph.D.
(As always, I am not a medical doctor. This information is based on my personal experiences and should not be substituted for medical diagnosis or treatment. Please speak to your health care providers about your personal situation.)

May all who are sick and ill
Quickly be freed from their illness,
And may every disease in the world
Never occur again.
As long as space endures,
As long as there are being to be found,
May I continue likewise to remain
To soothe the sufferings of those who live.
~The Dalai Lama


For many people, pain is pain. They have been blessed never to experience the amazingly wide variety of pain that the human body can endure. In the case of many women, natural childbirth or recovering from a c-section is their gauge of the highest level of pain they can imagine. For men, there isn't quite the same standard of comparison. I have heard many people of different sexes say that passing kidney stones was the worst pain of their life; for others, the pain of shingles is the ultimate misery.  Having endured shingles in my neck and having successfully completed natural childbirth many times, I would say that shingles were worse than my second and third labors for the births of my second thru fourth children. My first labor and birth, however, were far worse than any of them.

Yet when it comes to late disseminated Lyme disease, the levels of pain I have experienced are nowhere near the levels of pain in these other comparisons. In part, that is due to the unrelenting nature of Lyme pain. Childbirth labor will end within 24-48 hours in our modern culture. C-section recovery time is 2-6 weeks in many cases. But for Lyme, there is no definite time table. It just goes on and on. I tell many people that if I were able to put their spirits into my body, they would immediately pass out from the level of constant and unrelenting physical pain I live with. I have built up a tolerance to the pain, and I have learned how to function somewhat well with it. Most people, though, simply don’t have that tolerance. Yet no matter how long I have lived with it, the pain is still miserable. It doesn't make it any better just because you’re used to it. 

Despite the fact that I am a holistic life coach and intuitive energy healer who focuses on helping others heal through natural solutions, I frequently have people tell me how they cured their non-Lyme pain naturally. Based on their limited experience, they feel I should be doing what they did and I will magically be healed. They talk about how turmeric did amazing things for their pain or how other natural anti-inflammatories were miracle workers. However, that level of relief is not appropriate for Lyme pain. A comparable comparison would be like telling someone with a compound bone fracture that s/he/ze should just put a bandage on it, and everything will feel so much better. In that case, the person needs a skilled surgeon or doctor to put his/her/hir bone back into the body, to seal the broken skin, to apply a cast of some sort, and to monitor for infection or complications. The situation is far too complicated to just use a bandage. Likewise, no one in their right minds would tell women who are in labor or just had c-sections that the only methods of pain relief they should use is turmeric. Even if a woman is attempting natural childbirth, she will be using other pain relief techniques such as walking, acupressure, hypnosis, meditation, breathing, massage, and more in order to manage the pain of labor.

That’s not to say that natural pain relief methods aren't helpful. I do take fish oil, a natural anti-inflammatory, and get some relief from it. I’m pretty sure that if one sliced open my veins, they would be dyed the beautiful yellow-orange color of turmeric from how much I have taken it over the years. I use other herbal formulas to help lessen the pain by addressing other issues besides inflammation that cause pain for me. Yet alone, the natural methods are like putting a shovelful of dirt into a grave: It’s nowhere enough to fill the hole. Even in combination, these methods can’t get the pit even half full.

Why is Lyme pain so bad? That’s a million dollar question, and the researcher who is able to understand and cure it will win a special place in heaven if I had anything to do with it!  Lyme creates pain on many different levels: On any given day, I am dealing with muscle, bone, joint, ligament, organ, and neural pain. Each feels very different, and each requires different approaches for relief. But why is there all of this pain, especially when one is going through treatment for Lyme? The best analogy is a comparison to a bee sting.  When a bee stings a human, it releases a toxic venom into the human’s body which makes the human miserable, fatally so in cases of extreme allergy. In other cases, the bee toxin “just” creates severe inflammation, itching and pain. Regardless, it’s a successful evolutionary method of teaching predators like humans to stay away from bees lest they have to face the consequences of a sting.

Likewise, Lyme has evolved into an amazingly sophisticated bacteria, far moreso than most bacteria we are used to dealing with. The way it adapts and impairs the human body is mind-boggling to me.  One of these protective features of the evolved Lyme bacteria is that when it dies, it releases toxins into the body of its human host causing extreme pain. The Lyme doesn't want to die; thus, it tries to make it difficult and undesirable for the human host to kill it.  Survival of the fittest reigns again. Many patients who have fought late disseminated Lyme will tell you that the cure is almost worse than the disease when it comes to Lyme because of the extreme pain that happens during the process of Lyme die off, also known as a Herxheimer reaction or herxing.

So what can one do for Lyme pain? There’s a variety of approaches to take, and many people find they need more than one. Like I mentioned above, fish oil, turmeric, and other anti-inflammatories can be useful in contributing to the overall picture, but they will not be enough on their own for most people.  A strict diet is absolutely necessary: Sugar, refined foods, gluten, and other items can make the pain much, much worse. There are other herbs and natural substances that can also help bind to and absorb some of the toxins that the Lyme releases as it dies including chlorella and l-ornithine.  Because the buildup of these toxins in one’s system can create even more pain, it’s important to make sure that detoxification and elimination processes in the body are working well. This includes taking herbal and vitamin liver and kidney support, having frequent bowel movements, drinking lots of water and sweating such as in a FIR sauna. Massage, manual lymph drainage, chiropractic, and acupuncture as well as other bodywork modalities can also greatly facilitate the detoxification process.

The neuropathic pain I suffer from is also an indirect result of the Lyme die off. When many people are sick, their blood sugar levels will rise as part of the hormonal process that is helping them heal. When blood sugar levels get high enough for long enough, such as during a chronic illness, they can cause neuropathic pain that is hellish in ways that can’t be expressed in words. The burning and tingling sensation of my entire skin surface hurting is unlike any other; it makes me want to peel off all my skin with a potato peeler because that sounds less painful.

The obvious solution to this is to keep one’s blood sugar low through strict diet and herbs.  Despite devout adherence these methods, my body is stubbornly unwilling to lower my blood sugar levels; this is not uncommon among patients with Lyme. Since I am consistently short of being diabetic by lab testing because of a rigorous diet, my doctors cannot prescribe insulin to control my blood sugar; one of the other most popular blood sugar drugs for those who are pre-diabetic sent me into lactic acidosis, an uncommon but known side effect. (I’m not in the high risk group for it happening, either!) While I absolute detest medicating symptoms rather than dealing with the actual cause, the neuropathy I endure is one situation where the only realistic option has come down to medicating the symptom of pain rather than curing the actual problem in order to get through the pain of the battle in order to win the war. It’s a quandary because killing Lyme is raising my blood sugar, but in order to get rid of the Lyme to lower my blood sugar, we have to kill it. There’s no easy solution on this one. So in order to get me through the process of the Lyme dying, we have to mask the miserable side effects with drugs.

For someone who lives a very holistic life and does not partake in alcohol or recreational drugs, I am unbelievably grateful that there are western drugs to provide pain relief when all of the above is not enough. I have only met one person with severe late disseminated Lyme Disease who did not have to take narcotics at some point to get through the pain; it was a matter of principle for him and he chose to be in hellish pain rather than take the drugs. Most who have walked this path, though, will have no judgment of others who turn to high power drugs to help during the most painful parts of the journey.

I think many in the natural healing community, both patients and practitioners, forget that Western medicine does have a place of importance in our lives. While diet is crucial to successful management of diabetes, those who have diabetes, especially those with Type 1, rely on insulin to survive. Up until insulin was understood and used to help those with diabetes in the 1920s (winning a Nobel Prize), being diagnosed with diabetes was a death sentence. Likewise, I had a great aunt who died as a toddler early in the last century from “lockjaw” which we now know as tetanus. It’s a bacterial infection that can now be prevented through vaccination or in milder cases, treated with antibiotics after infection. These are health conditions that require Western intervention; most people don’t deny that.  What most people haven’t accepted is that late disseminated Lyme is a condition that also requires complicated treatments that involve both holistic and Western medicine.

Lyme pain is truly different than most other pain we experience as humans. It’s a pain that I hope that most people never have to endure. I also hope and pray that someday there will be better solutions for killing Lyme without creating so much pain as part of the cure.

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC

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