#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

#Lyme Disease Treatment with Andrographis Update

Hello To All,

I started taking the herb andrographis last month to help kill off the remaining borrelia. Both my naturopath and my LLMD thought this would be a good choice for me. So I started off with 1 pill per day with the intention of working up slowly.

Whoa…

My reaction to it was quite strong at first. I’m happy to say that I didn’t get a migraine, which is my usual signal that I don’t tolerate a substance. What I did get were classic die-off symptoms: fatigue, achiness, chills, irritability, and anxiety just for added fun. I slowly worked my way up to 2 pills per day 3 days per week. The recommended dose is 4 pills per day. It got easier, but it was still tough. But I felt optimistic because I knew that I was making progress.

Then I had a setback. I went a little wild with food while out of town and my yeast symptoms returned. I started on the Ampho B/Diflucan/Nystatin combination that has served me well in the past, but this time I crashed hard. It was probably the combination of the andrographis and the drugs. I had to stop the andrographis temporarily. It took about two weeks for my symptoms to subside. I feel much better this past week. It’s frustrating, though. Ever since the antibiotics, the yeast just keeps coming back. I’m looking into more long-term solutions for this, such as: systemic enzymes, iodine, monolaurin, and different probiotics.

On a positive note, some remarkable things happened in the last few months. I had some days where I felt great! Not just okay, not just good, but great! My sensitivity to food markedly decreased. I also woke up one day thinking that I’m finally healing and that I will make a full recovery. Is this false hope? I don’t know. But I’ve learned to pay closer attention to my body and listen to my intuition. It steers me in the right direction when I’m willing to listen to it.

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