Tag Archives: Lyme Disease

#Lyme Disease and Chronic Fatigue

Hello to All,

I had a good deal of physical and emotional stress this past winter/spring and it led to a major crash in May. I had to revisit some of my strategies for energy improvement and I thought this would be a good choice for a blog entry.

Although many of my debilitating symptoms are gone (joint pain, muscle pain, dizziness, vertigo, panic attacks, night sweats, severe migraines), I still deal with chronic fatigue symptoms. I find that I have to deal with fatigue from four angles:

  1. Adrenal function
  2. Thyroid function
  3. Mitochondrial function
  4. Neurotransmitter deficiency

First off, my cortisol is chronically low. The adrenal glands are taxed by chronic illness or stress of all kinds. During times of emotional or physical stress I have to take prescription hydrocortisone 10mg twice a day before 2PM. This is considered a physiological dose that replaces the cortisol that my body cannot produce on its own. This helps my energy, anxiety, and pain. I am far less fragile when I take it. When the stress ends, I can switch back to an adaptogen. Maca and eleuthero are my favorites.

The second thing that helps me is thyroid support. My recent thyroid test came back slightly low (both T3 and T4, but normal TSH), so my doctor started me on thyroid hormone. An important note: I do not have autoimmune hypothyroid. It’s important for your doctor to test you for thyroid antibodies and TSH level before treating you. Autoimmune thyroid disease requires a more comprehensive treatment.

The third thing needed is mitochondrial support. Mitochondria are the body’s energy production centers inside our cells. Often they are damaged by chronic illness. I take 200mg of CoQ10 and 2,000mg of l-carnitine per day. I use a specific brand of CoQ10: Thorne Q-Best. This one actually works for me, unlike the other ones I’ve tried. I use regular l-carnitine because acetyl-l-carnitine (ALC) gives me a headache. However, ALC is supposed to cross the blood-brain barrier and is said to be better for people with chronic fatigue. Another helpful supplement for energy is d-ribose, but I avoid all sugars because of chronic yeast. Eating good fats (nuts, avocado, olive and coconut oil, etc) is also helpful to rebuild our mitochondria.

The fourth strategy that helps me is taking amino acids such as dl-phenylalanine and l-tyrosine. These aminos are the building blocks of stimulating catecholamines in the brain. L-phenylalanine is stimulating, but d-phenylalanine has anti-depressant and analgesic properties. This strategy is from The Mood Cure book by Julia Ross. I cannot recommend this book enough! I currently take 1 gram of tyrosine 2x per day. Some people report side effects, but for me it works well.

Since implementing these strategies in May, my energy has improved noticeably. I can usually make it through a day without a nap, and I can exercise or do physical work such as gardening (though I still have my down days, especially when detoxing). My ultimate goal is to repair my body so as not to need all these supports. But for now, I’m grateful to have them.

Best,

Laura

Lyme Disease and Yeast: A Positive Update

Hello To All,

I know that I have a tendency to post when I feel poorly, so I think it’s high time for a positive update. Here it is: I feel pretty darn good! There are three things to which I can attribute this change:

1. My doc put me back on pharmaceuticals for yeast – indefinitely:

  • Diflucan, 200mg 1x per week
  • Nystatin, 1,000,000 IU 2x per day
  • Amphotericin B, 3X per day.

I started feeling better after a couple of weeks on this protocol. No more burning vulvodynia, fewer digestive problems, fewer headaches, less chemical sensitivity.

2. I started taking a low dose of Maca for the adrenals. Maca has turned out to be a wonder herb for me. My energy is much better and I feel more vigorous than I have in years. It is also beneficial for the libido, as people say it is.

3. I changed my diet (yet again). After years of being quite thin, I started gaining weight in my midsection after prolonged courses of ABX. That in combination with an obvious yeast problem made me seek out another low-carb diet. I started the Dukan Diet which is high protein, low fat, and low carb. Not only have I lost about seven pounds, but I feel much better on this diet. If I adhere to the diet, I have NO headaches and NO digestive problems, and NO bloating. I’m also in a better mood. Supposedly protein is beneficial for mood, and I think that’s true.

I have NO dizziness, vertigo, or lightheadedness. I have NO joint or muscle pain. I can drive for hours without problems, even on the highway. My mood has really improved, despite recent difficulties in the lives of my loved ones. I also feel mentally sharper. I recently made some art. I am even looking for a permanent job instead of little temporary ones. That’s a lot of improvement since the summer.

To follow up on my last post, I decided to try the Cutler heavy metals protocol. I tried low-dose DMSA but it flared the yeast. I’m switching to low-dose DMPS (which I’ve had before via I.V. Tx) I’ll let you know how that goes.

I continue to use a GB-4000 frequency generator for Borrelia and co-infections. I also started using it for fungus. I’ll see how that goes.

As I’ve said before, I believe that yeast/fungus is the big problem for me at this point. I think that diet, a long term killing protocol, chelation, and biofilm treatment are the keys to returning to health for me. Wish me luck!

Best,

Laura

 

Lyme Disease, Yeast, and Heavy Metals

Hello Again,

The yeast has returned… Just when I think I have it licked, it comes back. I’ve been through numerous courses of natural and pharmaceutical antifungal treatment and I maintain a good diet, but it always comes back after a couple of months. My doc figures that it’s a biofilm problem, so I’m back on enzymes.

Over the years I’ve experimented with many systemic enzymes for biofilm and yeast. By far the most difficult one is Interfase Plus with EDTA. Which got me thinking… State of the art biofilm treatment involves a chelating agent, like EDTA or lactoferrin, to pull the metals from the biofilm to help degrade it. Yeast and mercury, in particular, have an affinity for one another.

I did 11 months of intravenous chelation with EDTA and DMPS in 2010/2011. It reduced my lead and mercury levels substantially (and my bank account, too). However, my last test revealed that I still have some lead and mercury in me. My doctor says that amount shouldn’t be a problem, but others say any mercury in the body is a problem. I’ve heard people with chronic yeast say that it didn’t go away until they removed the ALL of the dangerous metals. So I’m going forth with more chelation.

In my research, I came across people online and in my Lyme community who use the low and frequent dose protocol developed by Andrew Cutler, PhD, a chemist. See http://www.noamalgam.com/ or www.livingnetwork.co.za. His protocol involves taking low doses of either DMPS or DMSA and later adding alpha lipoic acid (ALA) to clear mercury from the brain. His protocol has several important differences from the others.

  • Instead of taking high dose chelating agents once or twice per month, you take a low dose around the clock for several days in a row. This minimizes redistribution of the metals after the drugs wear off.
  • You must also take ALA which crosses the blood brain barrier.
  • You can do this protocol on your own at home.
  • The protocol is inexpensive.

Any chelation therapy has its risks, but his approach seems safe and logical to me. Also, this protocol is often done with young children who have autism. I’m reading as much as I can about the protocol and deciding if I want to do it. I’ll keep you all posted if and when I start.

Best,

Laura

Progress Report July, 2016

Hello To All,

I find that my recent posts all begin with the phrase, “I haven’t written in a while…” When I started this blog I was newly diagnosed with Lyme Disease and I felt hopeful and confident that I would make a full recovery. Four and a half years later I’m still struggling, although a number of debilitating symptoms have improved. I ask myself, why do I still blog? What do I have to offer people except an ongoing experiment that may or may not fully work? I guess that I write for myself to chronicle the process, to help process my feelings, and clarify my thoughts on how to move forward. Mostly, I hope others can learn from all this and recover.

So, where am I in the process?

Symptoms that have improved since 2010:

  • Vertigo (started in 2011 and improved in 2014)
  • Joint pain
  • Muscle pain
  • Headache frequency and severity
  • Food intolerance (major victory!)

What still plagues me:

  • Brain fog
  • Fatigue (worse)
  • Anxiety (worse)
  • Weakness
  • Depression
  • Insomnia (worsened in 2012)
  • Adrenal and thyroid problems
  • Chronic yeast (worse since ABX)
  • Headaches
  • Mild dizziness/lightheadedness (worse in recent weeks)
  • Tinnitus (worse)
  • Chemical sensitivities
  • General fragility

As far as I know I have four underlying problems that are interrelated:

  1. Tick-borne infections
  2. Mercury and lead poisoning
  3. Chronic yeast
  4. Mold intolerance

My doctor thinks that I got on top of the Borrelia and Babesia. (Hurray!) I will continue to use natural antimicrobials and a Rife machine for these bugs. Unfortunately, my doctors can only guess what’s driving the rest of my symptoms.

I’ve been using a high fat diet to improve mitochondrial function, known as the Mito Food Plan. I haven’t noticed any positive effects. Yeast treatment and detox continue to be my most important treatments. However, when I stop the prescription antifungals I relapse, despite a moderate carb, low sugar diet. I’m still trying natural antifungals to see if I tolerate them and if they are effective.

The frustrating thing is the variability of my symptoms. I felt so well last summer and fall, then relapsed during the winter/spring. Despite the frustration, I still believe that my body can heal if given the right tools. So in the coming weeks I plan to research treatments for my remaining problems, talk to my doctor, and create a plan. I suspect that I need more work on the mold and metals part of the problem. This will be the focus of my upcoming posts.

Best,

Laura

Progress Report September, 2015

Hello To All,

I haven’t posted to my blog in months. I went through hell on antibiotics in the spring, and I felt like taking a break from it all this summer. On a positive note, I felt quite good from late June through August. Here is an update.

As I mentioned in the spring, I’ve been using a frequency generator (aka a Rife machine) for 12 months now to kill off the borrelia. My doctor is very supportive of this, but says that I need something to kill the dormant or cyst form of the infection. I tried grapefruit seed extract and that gave me horrendous headaches. Ditto for Samento and Banderol. I then tried Tinidazole. I lasted on that for three months and crashed hard with gut and yeast problems. I stopped the ABX, kept rifing and doing some serious detox over the summer and lo and behold, I felt pretty decent! In particular, I went back on three Pekana detox remedies (Apo-hepat, Itires, and Renelix). I’ve come to realize that these remedies are super helpful for me.

I started on the herb Cumanda this past month. I stopped it because it, too gave me horrendous headaches. My naturopath suggested that I try andrographis. According to Stephen Buhner, this herb also kills the cyst form of borrelia.

So, where am I after almost 4 years of treatment? I’m not yet recovered, but I have made progress. I’m just getting frustrated and impatient at how long this is taking. I want to go back to work. I want to have fun. I want my life back!

I was feeling a bit despondent this month. I went to see author Katina Makris talk about her recovery from Lyme. (She is the one who wrote Out of the Woods. She has a new book out and she is touring). I felt a renewed sense of hope after hearing her talk. Her recovery took a long time, too. But she’s doing great now!

I try to remain hopeful. I also try to remember that there are many pathways to healing from Lyme, and many people who do indeed recover. So I keep slogging away at it.

Best,

Laura

#Lyme Disease and Rife Machines Part 2

Hello to All,

I haven’t felt like writing in a while. I’ve been in a holding pattern waiting to see how I felt after several months of killing Borrelia with a Rife machine. This technology is pretty new to me and I’m trying to understand it better. I’m also trying to decide how much faith to put in a treatment that is so alternative.

When I last wrote, my doctor had put me on Teasel root. This herbal antimicrobial made me miserable even though I reduced my dose to 1/10 of a drop once per week. I had profound fatigue, headaches, muscle weakness, shakiness, and light-headedness even at this low dose. My doctor agreed with me that these were side effects and not worth it for me. We discussed alternate medications, especially ones that would be compatible with rifing. He suggested tinidazole.

According to people knowledgeable about Rife machines, using antibiotics is counterproductive to rifing. Antibiotics can cause resistance and drive the pathogens deeper into the tissues as they avoid exposure to the drugs. Certain ABX can be used intermittently while rifing, such as cyst busters like metronidazole or tinidazole. I just read Bryan Rosner’s book Lyme Disease and Rife Machines and he says this as well.

I’m doing a treatment protocol that increases the time and number of frequencies as you can tolerate it.  I’m following auto channels recommended to me. Auto channels cycle through groups of frequencies. I started with channel 466, then I added 467. I just added channel 468 on top of those two. That will cover about 100 frequencies against Lyme spirochetes, hatchlings, eggs, and Babesia. The nice thing about the GB-4000 is that it can run 8 frequencies at once, so you can cover a lot of ground.

As for my response, I had 30-hour flu-like herx responses to the treatments for a number of sessions. The herxes decreased so I added time and more frequencies until I herxed again. I just started the tinidazole, so we’ll see what that does to me…

Best,

Laura

Lyme Disease and Frequency (Rife Machine) Therapy

This year I underwent 5 months of antibiotic treatment for Borrelia and Babesia. I think it did me some good as the dizziness and vertigo subsided. Unfortunately, I wound up with digestive problems, increased fatigue, and depression after the ABX. My doctor rotated me onto herbs. Both Samento and Banderol (cat’s claw and otoba) gave me wicked headaches. I’m now on teasel root and it really wipes me out, even at a low dose of 1 drop every three days.

I also finally decided to try frequency therapy (aka a Rife machine) to help kill off the spirochetes. Members of my local Lyme Disease community who recovered said that this was an important part of their treatment. They also said that it caused a definite herx reaction. I wanted to know what a true herx felt like, as opposed to a medication side effect.

For those of you unfamiliar with so-called Rife machines, here is the lowdown. Dr. Royal Raymond Rife was an American scientist who built the first high powered microscope in the 1930’s. He also discovered that all organisms have their own electromagnetic “signature” – a specific pattern of oscillation. He then discovered that viruses, bacteria, parasites, and even cancer cells could be destroyed by intensifying those frequencies until the organisms explode, just as an intense musical note can shatter a wine glass. Dr. Rife then invented a frequency machine to vibrate and destroy the organisms. His original technology was lost (not an accident according to those who believe it was an act of pharmaceutical company sabotage) but modern replicas exist.

Proponents of frequency therapy say there are benefits. No antibiotic resistance. Penetration into deep areas of the body that ABX miss, such as the brain. No side effects. No toxicity. No damage to beneficial flora. No yeast overgrowth. But this therapy is considered experimental and alternative. It is not FDA approved. Your doctor will not tell you about it for fear of risking their medical license. When I asked my doctor about it he said it was a good thing to do – unofficially, of course.

I started using this therapy weekly in September. I’m using a GB 4000 frequency generator with a MOPA (Master Oscillator Power Amplifier) and a plasma tube. I get what seems to be a true herx response: aches, profound fatigue, mild fever. I don’t get my typical toxicity headache. This lasts for about 30 hours and then subsides.

After my initial experiment killing Borrelia spirochetes with frequency, I’m now following an established 7-day frequency protocol to kill Candida. My first treatment left me feeling exhausted and achy, so I’m assuming it’s doing something. I’ll keep at it and see what happens.

Until next time…

Laura

#Lyme Disease, Allergies, and Self-Treating with BioSET

Hello to All,

In my previous posts I’ve talked about how much energy medicine has helped me deal with problems caused by chronic Lyme Disease. NAET and Bioset treatments are especially useful in reducing or eliminating my numerous intolerances to foods, chemicals, and medications. They also help with strange symptoms that no one else can figure out, like painful cracked lips or vulvodynia. I sometimes still can’t believe that I’ve become a convert to energy medicine. My Western, scientific mind has trouble with it, but I can’t deny its effectiveness for me.

I’m fortunate to have a practitioner near my home. For those of you who don’t, here is a YouTube video from Bioset’s founder, Dr. Ellen Cutler. She demonstrates muscle testing and desensitization techniques you can do at home.

http://www.youtube.com/watch?v=f0KHdsW6G7E

I haven’t had success muscle testing myself, but I’ve certainly had success treating myself numerous times. It works on a principle similar to homeopathy or allergy injections. Exposing a person to a minute dilution of a substance gradually desensitizes them. Here is how the treatment works:

  • Hold the offending substance in your hand, or place it in a jar if it’s particularly noxious to you.
  • Tap yourself down and up the spine 4 times while following a breathing pattern.
  • Hold the substance for approximately 15 minutes.
  • Avoid the offending substance for 25 hours for the basic home treatment or 2 hours for a booster of a Bioset treatment.
  • Repeat if needed.

I’m impressed with the fact that Dr. Cutler shares this information publicly. Those of us who are sick and hypersensitive would spend an awful lot of money if they needed a professional treatment every time they had a problem.

Laura

#Lyme Disease and Vulvodynia

Vulvodynia is chronic pain in the area around the opening of the vagina that occurs even when there is no obvious sign of infection or irritation. The pain can be so bad that it makes sitting or wearing pants uncomfortable. And sex can be downright unbearable. Conventional medicine does not understand the cause of this problem. Hormone replacement therapy, physical therapy, and trigger point injections are treatments commonly available. There are also self-care guidelines that can help make it more bearable, but do not cure it.

I’ve suffered from this condition on and off for about thirteen years. I tried biofeedback, multiple short duration yeast treatments, antidepressants, hormone replacement, and topical lidocaine gel. None was helpful. However, the pain has improved markedly in the last two years, and I want to share the things that worked for me.

Treat Chronic, Systemic Candida Infection

Few doctors understand how candida can cause problems even after a course of treatment. I found the work of Elmer Cranton, MD, http://drcranton.com/ and http://www.fungusfocus.com/html/triple_rx_treatment_strategy.htm and Marjorie Crandall, PhD, http://yeastconsulting.com to be helpful. Persistent or systemic candida means that the body is out of balance and can be a symptom of a larger problem (as those of us with Lyme Disease know). It can also mean that some species of candida were treated, but the more virulent ones remain and continue to cause problems.

Dr. Cranton advocates triple antifungal therapy to increase the chances of killing off multiple strains of this fungus. After trying natural antifungals to no avail, I finally asked my naturopath to try this therapy in 2012. For a minimum of three months I took:

  • Diflucan
  • Nystatin
  • Oral Amphotericin B

I had no side effects, and no liver problems while on this protocol. Please note: none of these drugs will kill off all the fungus, but can bring the load down to a manageable level. Maintaining a healthy anti-yeast diet and taking effective probiotics (i.e. ones that actually colonize the gut) are also important.

Chinese Medicine

Acupuncture and a Chinese herbal solution called Yin Care (http://www.yincare.com/) were also very helpful for me. Chinese medicine views vulvodynia as a condition of dampness, heat, and pathogenic organisms. Yin Care contains a number of herbs to combat pathogens and lower inflammation. Dilute it 1:1 or weaker, saturate a large cotton ball, and apply as a compress as often as needed until the discomfort subsides. This stuff works like a charm for me. I keep a bottle on hand just in case.

Energy Medicine: NAET and BioSET

These treatments use the approach of desensitizing the body from allergens. We can become “allergic” to anything, but especially to things that we are exposed to regularly. After prolonged antifungal therapy, my Bioset practitioner treated me for candida sensitivity, and also suggested that other substances can be causing the discomfort down there. Cotton and urine are also two common triggers of vulvodynia! Both of these things are rather hard to avoid, right? Going pantyless at night and rinsing after urination are helpful. Semen can also be an irritant for some women.

The nice thing about NAET and Bioset techniques is that you can treat yourself at home. I’ll talk more about this in my next post.

I hope his information is helpful to other women with this miserable condition.

Best,

Laura

 

 

Is #Lyme Disease Sexually Transmissible?

Hello to All,

Those of us with chronic Lyme Disease don’t want to hear this, but some scientists say that this infection can be transmitted sexually. A new study by an international team of scientists found the bacteria in vaginal secretions and seminal fluids, suggesting that sexual transmission of the disease occurs. Their findings are presented in the January issue of the Journal of Investigative Medicine.

http://lymedisease.org/news/lyme_disease_views/lyme-sexual-transmission.html

I have been ill for 15 years with this disease, and my spouse and I have been together for longer than that. So far he doesn’t show any symptoms. But I always wonder if it’s there, lying in wait for his immune system to weaken. I fear this greatly. One sick person in the house is bad enough. Two ill people would be devastating. I know of entire families who have Lyme Disease.

Have I killed off enough of this infection so as not to be contagious? Should we actually start using protection during sex NOW after all these years? (No way, we both decided). I think it more reasonable for him to be tested and treated if necessary. There are also immune enhancing substances and herbs that can be used for prevention. (Stephen Buhner suggests astragalus as a good one for prevention and early treatment). But for new sexual partners, using protection sounds like a good idea (for many reasons, of course).

The implications of this study are alarming. The transmission through bodily fluids means a much greater incidence of this disease than most thought possible. It means that sexual partners can get it from one another, and that mothers can pass it to their unborn children. Though the CDC denies it, this disease may truly become an epidemic, if it is not one already.

That’s enough for now. I’m getting rather depressed thinking about it.

-Laura