Tag Archives: chronic fatigue

#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, 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

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

#Lyme Disease Treatment: Herx or Medication Intolerance?

Hi All,

I’m very pleased today. I talked with my doctor and he thinks that the discomfort caused by the grapefruit seed extract wasn’t a herxheimer reaction, it was intolerance. I didn’t know that you could tell the difference, but he says there are clues. In general the guidelines are:

  • A herx reaction is generally marked by multiple symptoms such as malaise, muscle pain, fatigue, headache, and a flu-like feeling that lasts for weeks.
  • Medication intolerance is generally marked by isolated symptoms that resolve quickly upon discontinuing the medication.

I had intense headaches on GSE, even at very small doses. That shouldn’t happen. Also, the HA’s stopped immediately when I stopped the GSE. So I was intolerant! He suggested alternate cyst busting drugs:

  1. Metronidazole (I used this years ago and it caused awful nausea)
  2. Tinidazole (extremely expensive: $700/month)
  3. Rifampin (can cause liver problems. I know someone this happened to)
  4. Fluconazole, aka Diflucan. (This is my best option. I already take it for yeast problems, and it agrees with me. It isn’t as strong as the others, but I can take it for a prolonged period).

The nice news is that I feel good on my current regimen without the GSE. My headaches and neck pain are pretty much gone. I haven’t noticed bad night sweats. My energy level is improving. So this sounds like my magic combination for a while. I have a few other problems to solve, such as insomnia, chemical sensitivities, allergies, and periodic vulvodynia. But I’m relieved and I feel very hopeful that I’m on the right path.

The plan is to treat the Babesia for a minimum of 4 months, and stay on the ABX for Lyme for a while. Then I’ll switch over to herbals, probably for the long haul. I understand that long term maintenance is probably required for me. I accept the fact that I probably won’t be cured, but can achieve long term remission and live a “normal” life. I will be thrilled if this happens.

Best,

Laura

#Lyme Disease/Babesia Treatment: Antibiotics and GSE

Hello to All,

Three weeks ago, I started ABX treatment with Biaxin and Malarone, and I was doing pretty well. My energy is still low and I’m still having wicked bad insomnia (probably related), but my headaches and neck pain subsided! I’ll take any victory that I can get.

Then I added grapefruit seed extract (GSE) into the mix per my doctor’s instructions, 250 mg 2x/day.

Wham! The herx hit me. Daily migraines, lightheadedness, dizziness, worsening fatigue, trouble finding my breath at the slightest exertion. So I did my usual routine of detox and aklalinization:

  1. Lessen the dose of the offending medicine until tolerable
  2. Vitamin C
  3. Alka Seltzer Gold
  4. Lemon water
  5. Coffee enemas
  6. Epsom salt baths

GSE is known to break up biofilms and cysts where the infections hide. I’d say that it’s effective!

So my body has calmed down considerably. I reduced my dose of GSE to ½ of a 125mg pill per day. I will work up slowly as tolerated. My goals now are to:

1) Find the dose of GSE that challenges me without totally disabling me, and,

2) Keep trying sleep medications until I find one that is effective. (Unfortunately, the Trazodone I was using ceased to be effective after a few months).

So I trudge forward…

Best,

Laura

Lyme Disease and Fatigue Part 2

Hello To All,

Last month I began to experience profound fatigue – way worse than my usual fatigue. I’m glad to say that has improved. I started taking Eleuthero, Co Q 10, and L-carnitine twice per day in the morning and afternoon. Co Q 10 and L-carnitine are substances well known to enhance mitochondrial function. Eleuthero is known to fight fatigue and works as an adaptogen that supports the adrenal glands. Within days of taking these I felt more energetic and I was able to resume my usual (limited) activities. I still tend to get tired between 3 and 5PM daily, but it’s not too bad.

I’m waiting for the results of a salivary cortisol test to measure my adrenal function. I suspect that my adrenal glands are in sorry shape, but I still want the results in black and white. I already know that my thyroid is low, and thyroid and adrenal problems go together. Low adrenal function is linked to a number of health problems, especially fatigue.

“Adrenal fatigue” is a controversial condition. Mainstream medicine only recognizes extreme adrenal malfunction, either Addison’s Disease or Cushing’s Syndrome. A growing number of physicians are realizing that there’s a spectrum of adrenal disorders that can often be corrected with lifestyle, nutritional, and pharmaceutical approaches. For more information on this, I suggest reading Adrenal Fatigue: The 21st Century Stress Syndrome by Dr. James Wilson, or visiting his website, www.adrenalfatigue.org.

Best,

Laura

Lyme Disease Treatment and Fatigue

Hello All,

As I mentioned in a previous post, I started taking a new herbal antimicrobial  tincture called Quintessence from Bio Pure (Dr. Klinghardt’s company). This tincture contains five herbs popularized by the herbalist Stephen Buhner:

1)      Andrographis (modulates autoimmunity, protects heart tissue, and is anti-inflammatory for the central nervous system)

2)      Japanese Knotweed (antibacterial, anti-inflammatory, immune modulating, antioxidant)

3)      Ceanothus (for coagulation problems, sluggishness in the spleen, liver, and lymphatics. Also antimicrobial for certain coinfections like Bartonella.)

4)      Smilax

5)      Stephania (powerful for eye and ear involvement, balance problems, Bell’s palsy,  anti-inflammatory,

I started at 1 drop per day and am slowly working my way up to 30 drops 3x per day as directed. I’m happy to say that it didn’t disagree with me for the first few weeks. Then as I approached 20 drops 3x per day, Wham! The fatigue and malaise hit me like a city bus. I assume that I’ve hit a therapeutic dose and am experiencing die-off, aka, a Herxheimer reaction.

When you tell healthy people that you have fatigue, they say, “Oh yes, I get tired sometimes, too.”

Ahem. I politely try to explain to them the fatigue associated with Lyme Disease and die-off.  I say, “Remember when you had the flu? Remember how you couldn’t get off the couch for more than a few minutes and then you had to lie down again? And you felt like crap? Yah, it’s like that… but for days and weeks on end.”

Usually, my fatigue is mild. I have about 4 productive hours a day, then I have to rest in the afternoon,  take a short nap, and then I have some functionality in the evening again. But this time the fatigue is crushing. I may have a few mildly productive hours in the morning, and then I’m through. I HAVE to lie down. Ugh. I know some of you out there have it way worse than me, and my heart goes out to you.

I know that low thyroid and poor adrenal function also contribute to the fatigue. Unfortunately, when I take T3/T4 thyroid meds or certain herbs for adrenals, they are far too stimulating for me and exacerbate the heart palpitations. I’ll write more on this subject next time.

So what to do now?

  • Back off the Quintessence
  • Step up the detox with binders and vitamin C, use a sauna, etc…
  • Start taking Eleuthero (Siberian Ginseng) for adrenals and fatigue (given to me by my doctor)
  • Take Co Q 10 and L-Carnitine for cellular energy production and cardiovascular support.
  • Have a Bioset treatment. This can really calm a bad Herx reaction for me.

And when I feel bad enough I take Tramadol as needed. Tramadol is one of my rescue medications. Not only is it great for acute headaches and body pain, but it works wonders for feelings of general malaise and misery.

Best,

Laura