Healing from Lyme Disease 2. Salt and Vitamin C, dietary protocols

On a cold night in December 2004, a gigantic house spider, common to Europe where I lived, warmed itself beneath my blanket while I slept. I awoke with two large parallel spider teeth marks in the center of a swollen, red, itchy area just above my elbow. The spider was no where to be found.

Oh well, it was just a harmless house spider bite. Nothing to worry about.

Over the next few weeks I began to feel tired. I no longer bounced out of bed in the morning. After a few weeks, I found it hard to move at all. The feeling of fatigue had grown so gradually, however, that I didn't realize I was sick until Lyme was fully upon me -- again.

Five years earlier, I'd first come down with this disease. Now my doctor confirmed that there are many reports of Lyme infection after various insect bites, mites, ticks, mosquitoes, and also spiders.

I went online and looked into ways to increase the potency of colloidal silver, which, as I describe in my last post, I had used for three years in minimum dosages to keep Lyme disease in check. From January through March of 2005, I mixed colloidal silver with Gatorade. I'd read that the electrolytes in sports drink would increase the penetration of colloidal silver into the body. While I did see some improvement, it didn't feel as though I was hitting the bacteria hard enough. The herx reactions were diffuse, and I still felt incredibly fatigued.

I made an appointment with my Lyme-literate doctor in Switzerland. I wasn't looking forward to long-term antibiotic treatment, which, as I described in my last post, makes us feel much worse before we get better. My appointment was for May 15.

Strangely, I often found myself wandering about my kitchen, looking for something... I didn't know what for, I just had a feeling.... I was probably crazy, but I had a strong feeling that the thing that would heal me was right there in my kitchen. It was cheap, it was accessible, it was right there. If I could only figure out what it was.

In April, I learned about the new sea-salt and vitamin C therapy that had generated an online buzz and attracted hundreds of us "Lymies" willing to experiment. This bizarre-sounding therapy was touted as anti-parasitic, anti-fungal, anti-spirochetal, antibacterial, and antiviral.

It sounded crazy, but ... I actually already had the ingredients in my kitchen. As far as I could tell, I would tolerate the increase in salt as my kidneys are healthy, and vitamin C was harmless as any excess would be excreted in my urine.

The protocol begins with two grams of each per day, and gradually builds to twelves grams a day. I immediately felt much better. When waking in the morning, I could actually feel my extremities--the numbness was gone! My legs belonged to my body again. I had plenty of energy and strength.

After three days, the first herx began. My feet swelled and were painful. I could hardly walk. This soon abated, however, and for about three weeks I felt healthier than I had in months. I cleaned the house, organized, de-cluttered, painted a wall... it was a miracle. I increased the dosage,  a gram every few days. I plateaued for a while at six grams, at nine grams, and gradually worked my way up to twelve grams a day.

I had several herxes at about four week intervals, and they were more painful and extreme than they had been with antibiotics. Yet, between these herxes, I enjoyed energy and health as I hadn't since before the initial onset of the disease in 2000.

One very unusual symptom common to the salt/C protocol is the feeling of tiny creeping and crawling sensations just beneath or above the skin. It was so strange. At first, I felt these sensations all over my body. In later months, I felt them beneath my knees and in the ankles and feet. Sometimes, one large area in my leg would "jiggle" for hours--clearly the protocol was hitting the nerves, but it felt so much like an insect that I often ripped off my pajamas at night to see what was crawling on me.

Since that time -- 2005 -- many people have tried salt/C. While most see improvement, not all are healed. Here are some of the methods I used.

1) When I was due for a herx, I would increase the dosage to 15 grams a day be sure that I was really hitting the bacteria hard. I believed that in provoking the herx, I could be sure with each cycle that I eradicated another layer of the pathogens.

2) I ground the salt in an old coffee grinder and mixed it together with powdered ascorbic acid in a jar. I combined the salt and vitamin with 2/3 water and 1/3 fruit juice (grapefruit, pineapple and apple juice taste ok with salt/C), and this made it easier to swallow.

3) The dosages were spread throughout the day, one in the morning, afternoon, and evening. I did take a dosage at night, if I hadn't gotten around to it in the evening. I don't suggest doing this often, as it can interfere with sleep. (But it can also improve sleep at times.)

4) I did not sip the salt/C throughout the day, but rather, took each dose fairly quickly, swallowing it down at once.

5) I did not eat 10 minutes before or after taking my dose.

6) I had already done a moderate heavy metal detox in 2003, after removing my amalgams. It is difficult to heal from Lyme disease if the body is full of heavy metals. However, some people do succeed, even with amalgam fillings, when using salt/C.

7) I had lived in Europe over two decades at that time, and had not been exposed to genetically modified foods, or to antibiotics or growth hormones in dairy and meat products. I had not had an immunization since childhood. I believe these things do make a difference as far as having an intact and resilient immune system. Wherever you live, try to live as naturally as possible. Avoid an overload of electro-smog. Eat fresh, real food. 

I began this treatment at the end of April 2005, and by January 2006 the worst was over. I had the so-called "brain-herx" in December, (when the feelings of anxiety and hopelessness were worst), and hoped that the salt/C had penetrated to the deepest layer. It appeared to be so. After that herx, the remaining herxes were mild.

With one exception. In one of the very last herxes, I felt pain in all my teeth. It was so concrete that for several days I actually believed all my teeth were infected. It was very frightening, as I'd never experienced anything like it before. But as quickly as the pain appeared, it abated.

In Spring of 2006, I began three additional dietary protocols. With each, I felt I was a step closer to complete remission.

1) I did an anti-yeast (candida) dietary protocol for six weeks.

2) I then avoided all gluten and dairy for six weeks.

3) I then ate six cloves of raw garlic a day for six weeks.

By summer of 2006, I felt healed. I continued to take salt/C at a maintenance dosage (4-8 grams a day), but no longer had a herx reaction.

There are many other supplements and other healing protocols that I did while healing with salt/C, (qi-gong, raw milk, self-made kefir, healthy fats, turmeric and anti-inflammatory herbs and foods, to name a few) but I have outlined the main protocol here.


To learn more about the salt/C protocol, see the yahoogroup "lymestrategies."

Healing from Lyme Disease 1. Antibiotics, Colloidal Silver

My Experience with Antibiotics

I was fortunate, in 2000, to find an ILADS  doctor in Switzerland who would treat long-term with antibiotics. She began conservatively, prescribing doxycycline, 200 mg a day. I responded strongly to this dosage, and remained at this relatively low dosage throughout treatment. Doxycycline is considered relatively safe as far as antibiotics go, because it is absorbed directly in the stomach, rather than in the intestine, where antibiotics damage the intestinal flora. My doctor was pleased that I responded so well to doxycycline (meaning, I had acute healing responses), and she kept me on it for the next ten months.

 

This link to the use of doxycyline is interesting, as it represents the standard, CDC approach of short-term treatment, and the assumption they go on, that one can treat Lyme disease much like other infections, with one to two weeks of antibiotics. Compare this to what actually worked for me.

"A 2003 study suggested that a 10-day regimen of doxycycline was sufficient for curing most cases. The duration is a matter of some debate, since many physicians are concerned about persistent symptoms and so prescribe the antibiotic for 20 days. Whether prescribing antibiotics for longer periods of time adds any benefit, however, is uncertain. For example, according to the same 2003 study, extending the duration to 20 days did not prevent persistent Lyme symptoms any more effectively than the 10-day regimen."

I soon began to "herx," and that can be very frightening and difficult to deal with. However, Lyme patients learn that they can't avoid it, and that they have to "herx their way back to health." If all goes well, each healing crisis is one step closer to recovery.

For an understanding of the herx, see Under Our Skin now available on hulu.com. A few of these patients allowed themselves to be filmed while herxing.

Briefly, a herx is a temporary increase in disease symptoms as a result of the die-off of pathogens such as bacteria or fungii. When being attacked by antibiotics, the Lyme spirochete bacteria produce powerful toxins and neuro-toxins to poison the host and defend themselves. At the same time, their dead cellular bodies float in massive numbers throughout the body, triggering autoimmune inflammatory reactions such as pain in the nerves and joints, and mind-fog, hallucination or seizure in the brain.

In treating Lyme disease, the herx reaction commonly occurs in four week intervals. This has been observed so consistently by patients and doctors that it is a taken as a "given" in the dynamic of treating Lyme disease.

There are many possible explanations for the cyclical nature of the herx, none of them completely satisfactory. It is known that when the bacteria are attacked, they evacuate the parts of the body where blood easily circulates and go deep into the body's denser tissues. They hide within cells, within connective tissue, and even within bone. They change their shape to avoid detection. They join together into colonies and surround themselves with a protective gel (a bio-film) that antibiotics cannot penetrate. They  separate parts of their DNA into tiny cysts, from which they emerge later when antibiotic use has stopped and it is "safe to come out." Even if all active bacteria are killed,  cysts survive and months or years later, break out to form a new population of bacteria. 

It is easy to understand why Lyme disease is so difficult to heal, and why it often requires months to years to overcome it. The only hard thing to understand is why the CDC does not admit the necessary complexity and length of treatment in the face of the evidence.

The most convincing argument I have heard for the cycle of herx is that the bacteria may have to leave their hiding places to feed and reproduce about once a month, at which time they  come into the line of fire of the antibiotics or other antimicrobial.

My Lyme doctor explained that over the course of treatment, the antibiotics penetrate more deeply into the body and into the bone. From month to month, they reach into new "layers" and kill off bacteria hiding there.

In my case, the herx first showed as pain in the peripheral nerves and under the skin. I experienced pin-prick pains all over the body (actually, some of them felt more like ice-pick pains, very deep, and long lasting) and I also lost the coordination of my legs (the nerves were affected) and my extremities were sometimes numb.

Then the herx went deeper, into the joints, with knee and hip pain. I  would sit for hours in a recliner while videos of light comedy ran on tv, and would pass in and out of consciousness as surges of toxins hit my brain, and pain throbbed in my joints.

Then the herx moved into the brain. Lyme patients say that when the herx hits them in the brain, they  go through extreme anxiety and depression, as well as loss of cognitive abilities. Sometimes, they hallucinate and are in a completely different world. One of the women in my support group landed in a mental hospital, and was fortunate because a doctor there recognized her illness as possible Lyme disease. In my case, I lay as if dead on the couch. My mind felt like a block of concrete, unable to go anywhere... not into thought, prayer, meditation, memory, or emotion. This continued for two or three days, each day worse. 

When having a herx of any kind, it is difficult to keep the faith that this extreme experience is actually a necessary part of healing, rather than simply the illness getting worse. Bottom line: herxing is scary.

In the film, Under Our Skin, we see one woman going through seizures as she herxes. At the end of the film, after months and months of torturous treatment she is well. She had to go through absolute horror to get well, herxing her way to health. What a bizarre disease and healing process!

Finally, my herxes grew shorter and less acute, and my doctor said I could now  "pulse" the antibiotic, being sure that I was taking it during the time when I expected to herx. Each herx was  shorter and less intense. After ten months on doxycycline, I felt better. I wanted to stop treatment, and my doctor agreed.

I was very fortunate that I responded so well to oral doxycycline.

Colloidal Silver

During the next expected herx period, I did still feel some pain in my lower legs, so I decided to try colloidal silver. Many Lyme patients say that it helps them. Rather than buying expensive products from the store, however, I ordered a top grade "generator" that I could use at home to make quarts of quality colloidal silver. I took a small dosage every day for the next few months, and finally felt I had beat the Lyme. This was late 2001.

Lyme disease however cannot be cured. It goes into remission when the bacteria (and co-infections) are beat down in numbers to the point where one's own immune system can deal with them. But it can and will break out again if the immune system is weakened.


It is helpful to have something at hand to give one's body some help, and all wise Lyme patients have one or another antimicrobial ready to use at the first sign of relapse.

For the next three years, I would rely on colloidal silver, using it briefly whenever I felt Lyme symptoms such as pin prick pain or numbness. Each time, the overt symptoms disappeared. But Lyme was affecting me in less obvious ways.

In the spring of 2002 I developed bursitis--a painful condition in the right shoulder (the same shoulder where I'd had the tick bite in 2000). I saw a physical therapist, did  exercises and so on, but the condition did not improve.

It happened that I'd promised to play the guitar and accompany some musicians on a recording, but I developed a very bad cold a few days before. I reached for colloidal silver, which is often used to reduce the duration of a cold. Because I needed a strong healing boost, I drank down an entire quart on the evening before we recorded the music. My right arm was very busy of course, strumming the guitar (as it had been during several rehearsals.) Perhaps the colloidal silver and good blood circulation to the shoulder combined to help. The day following the recording, all the pain in my shoulder was gone--and it hasn't returned.

I have to suspect that what I'd thought was bursitis was actually an inflammation caused by Lyme bacteria that had settled into that area (the closest joint to the initial tick bite).

Now, people with Lyme disease become expert at understanding where they are in their healing cycles. They learn to tell the difference between normal fatigue after a hard day of activity from debilitating fatigue due to the illness or a healing crisis. They become expert in telling if therapy is working, by seeing if it makes them herx. .

Online, you can read many reports from the FDA and Quackwatch, saying that colloidal silver is bogus. But I believe the experiences of people with Lyme disease who report improvement using colloidal silver. They do not report complete cures, but, like me, they experience definite benefit from its use.

Lyme patients develop an extraordinary sense about what is happening in their body. This, in combination with the general lack of knowledge and support from the medical community, has led to unprecedented experimentation in healing and detox modalities by Lyme patients--and has helped many to get well. I am confident that our struggles will eventually benefit the world community, as this disease continues to spread around the globe.

Heather's Healing with Natural Modalities

Here is a wonderful interview with a vivacious, intelligent young woman who healed from Lyme disease using alternative modalities. She also used salt/C.

Secret Sources for our Special Forces - Antibiotics over the counter

People with Lyme disease often watch their health deteriorate, with no access to the antibiotics that could help them.

Not so our Special Forces, according to this letter to the New England Journal of Medicine in 2002, titled "Obtaining Antibiotics without a Prescription".

To the Editor:

I recently treated an Army Special Forces soldier who presented with a three-month history of purulent sinusitis that was not responding to self-medication. After much prodding, he related that he had been taking a combination of penicillin and sulfa antibiotics, which he had purchased without a prescription “in the fish medication aisle” of a local pet store. He went on to explain that this over-the-counter source of antibiotics is common knowledge among all branches of the American Special Forces community.

For the complete letter, follow this link:

http://www.nejm.org/doi/full/10.1056/NEJM200207183470319 

For an example of an online resource, search for aquatic antibiotics on ebay.

It's not new news that antibiotics are controversial. Their overuse leads to super-bugs that endanger humans and animals. Human use is highly regulated, and but some say unfairly so: a teenager can receive a year's worth of antibiotics for acne, but many with Lyme disease cannot receive the same antibiotic at the same dosage for the same period. Antibiotic use is rampant in veterinary medicine,  agriculture and animal husbandry. Why should Lyme patients suffer and die, when the medication that could help them is freely given to teenagers, cattle, and fish?

I personally advocate the use of natural medicine, whenever possible, in the treatment of Lyme disease and other health conditions (including teenage acne). However, there are times when antibiotics and conventional medical approaches are a lifesaver, and it is critical to have access to them. 

Most hopeful: Skillful Lyme doctors are discovering ways to combine antibiotics and other medications so that there are no "survivor super bugs." This knowledge has been developed by so-called "Lyme Literate MDs" who are members of ILADS. Joining self-help groups is the best way to be pointed to information, doctors and resources in your state.

The Amazing Documentary on Lyme Disease - A MUST SEE

  

"Under Our Skin" has recently become available on hulu.com for a limited time. To go to this film, click here.

Lyme disease has spread to every part of the globe. It is often unrecognized or under-treated by local healthcare providers, in spite of its being the second largest infectious epidemic, next to AIDS. This documentary is invaluable to every citizen of this world, and should be made to go viral. Through several moving human case studies, "Under Our Skin" shows not only the various ways that this illness can manifest, but the happy endings that can be achieved through the dedication of  doctors who are willing to risk their licenses with long term, complex treatment. As we watch several very ill people "herx" their way back to health and pick up their lives again, we can appreciate how many other hundreds of thousands  unnecessarily suffer and lose their lives through lack of qualified treatment.

The second half of the film reveals the cohort of the CDC, pharmaceutical industries and the insurance agencies in glaring, unequivocal light. When you, as the viewer realize the extent of the disregard, discompassion (to coin a word), and negligence that pervades and corrupts the very system that is supposed to be guarding our health, you, the viewer are given the critical distance you may one day need as you battle any number of illnesses, including heart disease and cancer -- nearly all of which have the similar cohorts implementing treatments that are not truly evidence based and helpful, and preventing effective, less expensive (because not patentable) treatments from being researched and known.

This book by a renowned professor of medicine explains the lack of evidence-based studies for many of our common medical practices: "How to Stay Well Despite the Health-Care System," by Norton M. Hadler.

Lyme Disase, My Story, The Larger Story

Lyme Disease -- My Story, The Larger Story

I've been in remission from Lyme Disease for five years now, five glorious years of being able to get up in the morning, to bounce out of bed lightly, with ease. When I was ill, it was a struggle to get up because I could not connect my will power with the nerves in my body, which lay numbly in bed, as if a separate entity from me. This disconnect was due to toxins in my brain. The toxins were generated by the bacteria, with the specific goal of paralyzing the host, me.

To wake up in the morning and get out of bed is one of the many luxuries of  regained health. Being able to remember words and easily put together sentences is another. Being able to speak without having to work at not slurring, to not experience the unexpected odd or raging pain, and to get through the entire days without having to take multiple naps is a huge relief. The reduction in chemical sensitivities (I no longer gag at smelling perfume, and can enter a retail store without getting a headache) has made moving through the world much easier. But having a reliably clear, well-functioning brain has been the best gift of all. How we take being able to think clearly for granted until it is lost!

If you go to youtube and search Lyme Disease, you'll find many people talking about their symptoms. What you don't see is the effort required for these people to make these films--the concentration required to speak clearly and smoothly, the effort to organize their thoughts, the will power required to find a moment when they feel well enough to make as good of an impression as they do. People with Lyme Disease often appear "normal" due to their effort to function, but it is all theater. They are anything but the norm, anything but well.

I don't know when I first contracted Lyme disease from an insect bite (probably a tick). In my late teens I often hiked in the mountains of Southern California. I was 20 years old when I felt distinct, odd symptoms: shooting pain in my legs, dizziness on waking, cracking sounds in my skull, as the plates of my skull expanded to encompass my inflamed brain. These symptoms were followed by bouts of viral illness and  months of extreme fatigue.

This was in 1976, before Lyme disease as such was known. I did what I could for myself with meditation, yoga, and a raw foods diet. The latter was especially helpful. It cleared my brain and gave me a lot of energy. I believe that the yoga and meditation also helped, and that playing the flute (I was studying music), because it required deep breathing and kept me well oxygenated, was also helpful.

After a year on a raw foods diet, I could modify the diet and still feel fairly well. I believe that my own immune system had succeeded in getting the Lyme bacteria under control. Still, I dealt with various degrees of fatigue throughout the following years. After the birth of my children, it was the worst. Talk about postpartum exhaustion! That's when I discovered that the "correct combining diet" aka Harvey Diamond's "Fit For Life" could turn my energy around. After about two years, I could modify the diet and still feel very good.

This was one of the many lessons in the role of the diet in the postpartum that led to my writing "Mother Food: A Breastfeeding Diet Guide with Lactogenic Foods and Herbs." Along with profound exhaustion came problems with sufficient breast milk supply to feed my babies. I asked the mother-care nurse what I could eat to increase my supply, and she replied that, to her knowledge, lactation happened independently of diet. I immediately felt that this wasn't true. I had seen how a raw foods diet could alleviate fatigue and depression. I had seen the profound effect of food on brain function. I was absolutely sure that foods and herbs existed that would help to increase my milk supply. I was also sure that women around the world would be able to tell me what those are. But my mother-care nurse had not heard about lactogenic foods and herbs, and this obviously had to do with our own culture and history.

As time went on, I would discover many foods for lactation. Having four babies offered me ample time to experiment. I would also learn to understand the immune-boosting effect of many foods and herbs. Many of the same foods and herbs that increase milk supply, or that increase the immune substances in breastmilk, would be helpful in keeping Lyme disease at bay.

In 2000, when my youngest child was eight years old, I came home from a hike with a tick buried in my arm. Lyme Disease quickly developed. I had various pains, lost my energy and concentration, and felt a band of tension around my head all the time. My family doctor gave me doxycyline for four weeks, and I experience for the first time what a "herxheimer reaction" was in the context of Lyme disease.

The "herx" is a temporary increase in symptoms as a response to the die-off of pathogens. When being attacked by any anti-microbial, such as antibiotics, the Lyme bacteria produce powerful toxins and neurotoxins to try to defend themselves from the host. In effect, they poison the host, trying to discourage the host from the healing behavior, for instance, from taking antibiotics. In addition, their dead cellular shells are released in massive numbers throughout the body, overloading the liver and kidney and triggering autoimmune inflammatory reactions.

During that very first herx, which lasted about a week, I could not write, I could not read, I could not follow a conversation, I could not walk fluidly but rather I slowly waddled like a duck. Going up or down stairs, I had to be very careful because my feet were numb, as if they pillows. My arms were also extremely weak. I could hardly lift them.

The worst part was the isolation. I could not tell anyone about my experience because my brain could not find the words. I could not cry or get angry because I couldn't muster the emotive energy. All my concentration went into deciphering the basic steps of necessary tasks. My family needed me to function, so I tried. For instance, if I was cooking, I struggled to remember where the salt was, and then to remember how to open the cabinet to get it. "Pull on the knob." Because I functioned, albeit slowly, no one noticed that anything was wrong. Thank goodness there were no emergencies that week--I would have been unable to react.

When I later learned that Lyme Disease is sometimes misdiagnosed as quick-onset Alzheimer's, I could only nod in agreement. That first herx experience had been like being dropped into full blown dementia2--not at all something anyone wants to experience. However, I have to say that the experience was its own "teaching," because since then, and in general, struggling with the cognitive issues created by Lyme disease, I gained an appreciation for all kinds of brain damage, and for the loss of short term memory experienced by many, and for autism and ADD -- both thought to be entangled with the Lyme paradigm.

Back to my story -- when the first herx passed, I looked online for self-help groups. What I learned shocked me: Lyme disease was a battle field. Institutions and corporations such as the Center for Disease Control, pharma industries and  insurance agencies all stood solidly together, holding their front. On the other side of the demarkation stood MDs whose clinical experiences and protocols inherently contradicted the core position of the "CDC and co." In a nutshell, the one "army" maintains that Lyme disease is easy to heal quickly with short term antibiotics, while the other insists that treatment is complex and must be applied at least for several months.

Unbelievably, the CDC reached their conclusions about the "quick" solution after very little research, and they stuck to it. When the CDC claims that they base their guidelines on "extensive research" they in fact reference limited studies done exclusively by their own people. Independent studies are ignored.

This behavior of our most reputable institution for the protection of the health of Americans appears unexplainable until we realize that Lyme disease was doubtless "weaponized" in several laboratories after WWII. It cannot be a coincidence that the first major outbreak of Lyme was found in a direct line as theoffs bird flies from the offshore laboratory where such research was conducted.

It is impossible to penetrate into the historical background of the development of Lyme disease, however, or to challenge the CDC's stance on treatment, because to do so would evoke the statement that it is a "matter of National Security," and any such matter is beyond the freedom of information act.

Through having Lyme Disease myself, I have become aware that maintaining an optimal immune system is more important than ever--starting with a good pre-pregnancy detox of the mother and father, continuing with good diet during pregnancy, and if possible, followed by lengthy breastfeeding of our babies.

We all live in a world of increased toxins, and of intentionally and unintentionally man-created diseases. They affect us all, regardless of race, gender or socio-economic status.