Tuesday, May 23, 2017

Slow and Steady Wins the Race

Second blog post: Slow and Steady Wins the Race
Fast forward past a year of treatment that included all those medications from Mexico. The morning after the first dose of doxy, I could turn my head. My chronically swollen neck glands were less so. We took doxy and made it through the herxing (symptom flares from the killing off of parasites). We felt better but if we stopped taking antibiotics, our symptoms quickly returned. Continuing research had taught me the dangers of long-term antibiotics so I was nervous about that. We were using many of the supplements suggested in both the Horowitz book (Why Can't I Get Better) and the Buhner book (Healing Lyme). Some of them brought relief while others didn't. The point is, we never got better and stayed better. We underwent aggressive therapies from our renowned LLMD including ozone, rife, Myers cocktail, glutathione, Vitamin C, UV light, all of which seemed to help while we were undergoing treatment. But, within ten days away from the treatment, we could feel our symptoms creeping back in. I have a lot to say about those treatments, and especially the diet and nutritional changes we made and the supplements we took (and continue to take) that keep our immune systems strong. But first I want to talk about the thing that helped us the most and brought us lasting recovery: anthelmintics.

Dr. Alan McDonald's London Lecture of May 15, 2016, must have come across my newsfeed soon after it was recorded. Dr. McDonald's research made so much sense that I immediately emailed it to Logan's Nurse Practitioner (NP) Jennifer, who we saw at the prestigious LLMD's office. As a longtime horse and dog person, I was very familiar with the use of wormer in animals and it just made sense to me that people with parasites would also benefit from this treatment. So I began researching the use of wormer in humans. You should do this too. Do not take my word for any of this. Look at my links, study the information here, and then do your own research. Watch Dr. McDonald's lecture and heed his warning: People with Lyme Carditis (parasites in the heart) should be very wary of using wormer. I was desperate. I did my research, consulted our NP, and tried various wormers out on myself before allowing Logan to use them.

Here's what I learned:

There are groups all over the internet where people are ingesting horse and goat paste wormer. I wasn't willing to do that, but had realized the extent to which everything we put ON the body ends up IN the body. So my idea was, if we couldn't get a prescription for wormer, that we would use horse paste where the worms live . . . on our spines. (According to Dr. McDonald, the Borrelia-infected nematodes live in our cerebral spinal fluid and feed in/on our brains.) Watch Dr. McDonald's lecture!

The Jimmy Carter Foundation, along with Merck Pharmaceutical, sends millions of doses of ivermectin to countries in Africa that are stricken with River Blindness (caused by a worm parasite). However, Ivermectin is rarely prescribed for humans in the US and it is ridiculously expensive.

The next time we saw Logan's NP, we discussed Dr. McDonald's research. She wrote Logan a prescription for a low-dose (3 mg) of Ivermectin. When we presented the prescription to the guy working at the pharmacy, he warned us that it was going to cost some ridiculous price ($1200 comes to mind but so does $2000 so I wouldn't swear to either.). So we asked him to fill only a fourth of the prescribed number of pills, just enough to try it.

The test for nematodes in the spinal fluid would be a spinal tap. Our NP and I agreed that the test would be more invasive and harmful than the treatment. It's a shame there is not a better test. Veterinarians test and treat our pets for parasites everyday, using the office microscope. It is criminal that we are testing and worming our pets but not ourselves or our kids. Every month for fifteen years, I have given my dog Heartgard. The active ingredient: Ivermectin. I have a thirty-one-year-old horse who has been wormed every three months for the twenty years he has been with me. But not my kids. There is a real arrogance in the US. We know that people in developing countries have parasites but do not think that Americans have parasites. And it is so easy to get parasites. One improperly washed salad, undercooked burger, infested sushi roll is all it takes. Not even a bug bite, just eating. Or sleeping with your pet. Or going barefoot. Or swimming in questionable water (all water is now questionable).

This is one of many reasons why the Lyme test is unreliable. Not only is it very limited in hitting on the many different strains of Borrelia, it completely overlooks any of the other parasites that mammals can be infected with. When that Western Blot comes back normal, everyone is like, okay, whew, no parasites. This lack of testing for other parasites is devastating.

Here are links to the most relevant neurotoxin-elimination / anthelmintic protocols that I returned to over and over as we learned about and used various wormers:

Like Bryan Rosner's book, Freedom From Lyme Disease, this article by him is dense with important information and needs to be printed out and studied with pen in hand for taking notes. My copy is full of highlighted passages and scribbles. We had already begun our own parasite treatment before I came across Rosner's work, so we did not do the parasite protocol in the same order he did, nor did we take all of the wormer's that he has listed in his protocol. (Some of them I'm still trying to get my hands on.) But his work was definitely a big part of our learning curve and subsequent treatment. I bought his book because this article was so good and because I believe in supporting people who are doing good work and even giving some of it away to help people.

Here is an important article from Dr. Simon Yu (author of Accidental Cure) that contains useful information about the safety and efficacy of Ivermectin.

This article from Dr. Klinghardt does not contain a wormer protocol but it is full of valuable information for dealing with neurological symptoms.

This article is full of details about the use of the wormer fenbendazole used in combination with red reishi mushroom (capsules), which is a protocol found in the work of Steve Beddingfield on the FB group Morgellon's Support Protocol. This is not a group for the faint of heart as there are many graphic photos of Morgellon's sores and other squeamy things. The photos that Steve and others in the group post of their disease and infectious agents are what inspired me to buy a microscope and learn to use it. Looking at what was coming out of me on this protocol, I was very surprised to find that I was getting rid of a lot of slime mold. I would suddenly projectile-cough up thick rubbery balls. It was horribly amusing. Because of getting rid of mold (which I didn’t know I had) Steve Beddingfield’s protocol is the one that brought me the most lasting recovery so he is kind of my hero.

That's for starters. My next post will tell about our de-worming experience. Until then, please peruse the links here to decide if de-worming yourself is worth trying. There is a wealth of information in these articles and the one sure-fire way I know of recovering from these parasite diseases is to educate ourselves. For anyone desperate to get started, I would recommend using over-the-counter pinworm medication. Doctors routinely give this to children with itchy butt (pinworms); however, the active ingredient - pyrantel pamoate - kills more than only pinworms. I like using the liquid suspension because you want to be able to adjust the dose. Take very small doses over several days, adjusting it as needed. You want to take enough to feel that something is happening but not so much that a rapid die-off of parasites makes you feel miserable. Getting rid of parasites is definitely one of those "slow and steady wins the race" kind of things.

Sunday, May 14, 2017

The Beginning of Our Lyme Tunnel

In early May of 2015, my husband and 21-year-old son, Logan, took me to the Cincinnati zoo for Mother’s Day. We had been walking around for about half an hour when Logan sat down on a bench, put his head in his hands, and said, “If we are going to stay here, I am going to need a wheelchair. I can’t walk anymore.” My husband and I looked at each other, stricken. Logan was sweating and very pale. Our athletic son couldn’t walk around the zoo for an afternoon. We had been taking him to doctors for various “sports’ injuries” for more than two years. We had spent tens of thousand dollars on physical therapy and two surgeries that did not relieve Logan’s pain. When walking to his classes became too difficult, Logan had dropped out of college and moved back home. He did his physical therapy exercises with religious devotion, hoping to get back to school and volleyball. He began having headaches. His body alternated between fevers and chills. I remember looking at him one day that June and thinking, “You are dying right before my eyes. You are dying and I don’t know how to fix you.”

Fast forward two months to July of 2015. Logan, and I sat in a small lab in Tijuana, Mexico, alongside Dr. Manuel Lazo, as he looked at our blood under a dark-field microscope. On a large monitor mounted on the wall, we saw what we had come here to find: the spirochete Borrelia Burgdorferi, the parasite that causes Lyme disease.

I could tell you so many stories from that trip . . . stories of my exhausted son trying to make it through the long customs line to return to San Diego after a day at Dr. Lazo's clinic (Hospital Mexico); of taking bulging bags of Mexican prescription drugs through customs (without being stopped or questioned) and then flying home with suitcases loaded with boxes of Spanish-language antibiotics, antimalarials (for Babesia, which we had also seen in our blood), corticosteroids, and several other anti-parasite medications. We piled into our suitcases enough drugs to last three Lymies six months (there was a third person with us who has not gone public with Lyme so I will not out her here) and worried (needlessly) about getting through airport security.

That trip was the first step on the Lyme journey we have been on now for nearly two years. At the beginning, we took the desperate step of traveling to Tijuana because it was affordable and Logan could be seen immediately. Logan was supposed to be at a Florida college playing beach volleyball. But instead he was home, dragging himself out of bed to do all of the physical therapy assigned to him for his "volleyball injuries." He had already had surgery on an elbow and an ankle, neither of which had alleviated his pain. Then he experienced pain in both wrists but we were getting wiser. When he was told he needed two carpal tunnel surgeries, he refused. By this time, I was telling every doctor we went to that Logan had to have something systemic because it didn’t make sense that a twenty-one-year-old kid was experiencing so much pain and fatigue and unexplained illness. Some doctors were dismissive, others were sympathetic but stymied. Logan was tested for arthritis but x-rays showed nothing. There was talk of testing for auto-immune disease, but luckily, at that juncture, a dear friend began hounding me to have Logan tested for Lyme disease.
My college roommate, Jenny, posted regularly on FB about her family’s battle with Lyme disease. Upon hearing of Logan's ailments, Jenny convinced me to have him tested. But his test came back negative. Like many others, we would come to learn how devastatingly unreliable the CDC-approved test for Lyme Disease is and how much misery that unreliable test creates around the world. Luckily, Jenny is a persistent Lyme warrior and she kept hounding me. Eventually, a list of Lyme disease symptoms appeared in my inbox. After reading the list, Logan said, "I have every one of those." I looked at it and said, "So do I."
But here we are now, twenty-two months later, and we are as close to cured as anyone I've heard of who has had long-term, misdiagnosed Lyme disease. The suffering encountered by severely ill people in the on-line Lyme disease groups is overwhelming. People can't find knowledgeable doctors or if they can, it takes months to get in to see that doctor.  Because there are so few of them, Lyme Literate doctors (LLMDs) are able to command exorbitant rates. Even so, they can't keep up with the number of patients. My son and I have done many, many treatments and I know now that we spent too much money. I know which treatments seemed to help while undergoing the treatment, but did not have lasting effect. I know the importance of rebuilding the immune system, eating a healthy diet, and what veterinarians know about parasites: deworming works.
The renowned Lyme researcher Dr. Alan McDonald brought us lasting wellness. In my opinion, his 2016 slideshow and lecture of very recent research saved us. If you want to get better, watching this as many times as it takes to understand it is Step One. There it is, right up front -- the most important thing I can tell you about getting better. But there is so much more to tell you about why we’re sick in the first place and how to stay well. I'm convinced that those of us who know about human parasitic diseases are going to be the lucky ones.
There is a saying that no-one does better research than a worried mother. After realizing Logan was slowly dying in front of my eyes, I became a frantic, obsessed researcher. I learned about ozone therapy and the differences between classes of antibiotics. I learned about crazy conspiracy theories and some not-so-crazy conspiracy theories. In the waiting room of our LLMD, I glimpsed what the real zombie apocalypse will look like: mangled people in wheelchairs looking for answers. I learned about coffee enemas, urine therapy, and the distilled water protocol. I now own a salt lamp and know the properties of some of the essential oils. I bought and learned how to use a microscope, for crying out loud. I am not the same person that I was in 2015. I am wiser. I wear latex gloves to apply topical medicine to my pets’ skin problems. I will never again eat sushi. I know what it means to detox. I sleep at night and wake refreshed. I don’t get migraines anymore. I’m happy again.
These posts contain the information that I post over and over in answer to questions in the Lyme disease groups. I hope they are helpful.