Renewed Hope for Lyme Disease and Biotoxin Illness

Hello to All,

I met with my third doctor in three years on my ongoing quest for health. I was impressed by his comprehensive approach to my illness. Here is the gist of it:

  • I have Lyme Disease (he is my third doc to confirm this*) AND
  • I also have Babesia (diagnosed by symptoms. Testing is $$$ and not always helpful) AND
  • Poor phase 1 and 2 detoxification ability resulting in inadequate glutathione production
  • Inability to detox mold resulting in biotoxin illness (revealed by genetic testing)
  • Methylation defects – MTFHR and others
  • Ongoing yeast problems
  • Increased intestinal permeability (aka Leaky Gut syndrome)
  • High levels of lead and mercury (though they came down significantly with IV chelation)
  • Reduced liver function
  • Reduced thyroid and adrenal function

Now, I already knew most of this, but it’s refreshing to have someone put it all together at one time. Now we’ll see if he has solutions for my problems. I can only hope that this is the complete picture of my health problems and there are no others in hiding. I’m testing my metal levels and spending the next 5 weeks detoxing before proceeding with Babesia treatment. Here are a few meds and supplements that I’ll be adding to my regimen:

  • Apex Methyl-SP formula, containing high doses of B vitamins, TMG and choline (given by my current naturopath)
  • Researched Nutritionals Liposomal Glutathione
  • Cholestyramine
  • Diflucan every other day
  • Nystatin twice per day

I’m also experimenting with my diet. I mostly avoid gluten, dairy, and sugar, and now I’m cutting down on the meat and omitting beef and pork entirely. I must admit, I feel a little starved.

I feel a renewed sense of hope after meeting with him. But as they say, the proof of the pudding is in the eating. I’ll track my symptoms and report back.

Best,

Laura

* Note: I have a Lyme Disease diagnosis by two naturopaths and an MD whose specialty is treating Lyme, ME/CFS and similar conditions. I’ve thought about seeing an infectious disease doc, but I doubt I’ll get any assistance from one. My diagnosis does not meet CDC criteria.

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Lyme Disease Treatment Frustration

Hello to All,

I usually like to write about new and innovative things pertaining to Lyme Disease and related illnesses. But this post is about frustration. I’ve gone through three years of treatment (including initial detox work), and I’m wondering if I’m making enough progress.

In 2012, I had a lovely remission for several months after detox and my first two herbal anti-microbials. I thought for sure I was on the right track. Then treatment with Byron White A-BART formula set me back considerably. Then I had an awful time during the winter while taking ketoconazole for yeast along with an enzyme from another doctor. That combination made me sicker than I’ve ever been in my life. I switched doctors and was stabilized for a while in the summer. But I’m once again struggling while taking an antimicrobial herbal concoction called Quintessence. I can’t seem to take it for more than a week at a time without feeling really bad. Maybe it’s more of an allergy than a herx? It’s hard to tell the difference.

My life is a constant roller coaster of fluctuating symptoms resulting in mild to serious disability. Unfortunately, most things that are supposed to make me feel better end up making me feel much worse.  I really need to hit a solid turn around point so that I can resume working and have a life again.

I boil it down to three problems:

  1. Poor detox ability
  2. Poor inflammation control
  3. Recurring yeast flare ups whenever I take an antimicrobial (even the herbal kind)

I started looking back to 2012 to see what I was doing that may have contributed to my good health for several months. I did:

  • IV chelation
  • a series of colonics
  • healing treatments and foods for the gut
  • Pekana Detoxification remedies for the liver, kidneys, and lymphatic system (Apo-hepat, Renelix, and Itires)
  • pharmaceutical and natural antifungals

This was all BEFORE starting Lyme meds. Then I started doing BioSET treatments. Perhaps I was properly detoxed and my organs of elimination were functioning well, and that enabled me to tolerate the Byron White A-BAB and A-L formulas. I will re-visit these strategies to see if they help.

I’m also considering pharmaceutical antibiotics treatment. Many Lyme docs say that they are necessary for recovery. I’m not saying they are the only important thing, just that most patients need them to recover in conjunction with other remedies. I’ve also been talking to other Lyme sufferers who felt that the ABX were an important piece for them.

I have an appointment next week to see Dr. R., an LLMD in Seattle who is supposed to be very skillful with ABX. I want a confirmation of my diagnosis and fresh eyes on my problems. He also has an impressive and comprehensive website with a free treatment manual that aims to help not only his patients, but patients who self-treat due to cost or lack of insurance. I hope he has some strategies for detox and combating inflammation so that I can make some real progress in 2014.

I’ll let you know how it goes. Wish me luck!

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

Lyme Less Live More Event Sept. 18 – 20, 2013

Hello to All,

I just found out about this global online summit called Lyme Less Live More,  produced by Brent Martin and Dana Walsh (from the documentary “Under Our Skin”).

Lyme Less Live More is a FREE 3 day long online event that will broadcast over 12 interviews with today’s leaders in transformational health and healing. Speakers include Dr. Dietrich Klinghardt, Dr. Beth McDougall, author Connie Strasheim and more.

The interviews will be broadcast, on a schedule, from September 18 to September 20.

http://lymelesslivemore.com/

Best,

Laura

Bartonella as a Possible Cause for Rheumatic Disease

Hello to All,

Following is a link to an excellent audio interview with Dr. Robert Mozayeni, a rheumatologist in Bethesda, MD who has conducted research with patients with chronic inflammatory diseases and found a link to Bartonella infection. I highly recommend listening to it. This could be a real breakthrough, especially since it comes from a conventionally trained MD.

http://www.peoplespharmacy.com/MozayeniXtended.mp3

Here are some important points from the interview:

  • Chronic  rheumatological diseases often have an infection as a root cause
  • Lyme Disease is often a blanket diagnosis when in fact organisms other than borrelia are the problem. Those with Bartonella can often be misdiagnosed as having chronic borreliosis, which similarly manifests, though the two are distinct.
  • Treating a patient for Borrelia when they actually have Bartonella can have detrimental effects
  • Bartonella is hard to detect and difficult to treat
  • Typical testing for Bartonella is often faulty and results in under diagnosis
  • Treating Bartonella involves a long course of antibiotics, at least 6 months
  • Neurological symptoms are common with bartonella infection
  • Patients are often stigmatized and traumatized after repeated treatment failures in the medical system

Background

In collaboration with Dr. Robert Mozayeni, a rheumatologist based in Maryland, and Dr. Ricardo Maggi, a research assistant professor at NC State, Dr. Ed Breitschwerdt, professor of internal medicine at NC State’s College of Veterinary Medicine and adjunct professor of medicine at Duke University, tested blood samples from 296 patients for evidence of Bartonella infection. The patients had previously been diagnosed with conditions ranging from Lyme disease to arthritis to chronic fatigue. Since rheumatic symptoms have sometimes been reported following cat scratch disease, the researchers wanted to see if these patients tested positive for B. henselae.

Of the 296 patients, 62 percent had Bartonella antibodies, which supported prior exposure to these bacteria.

Breitschwerdt and Maggi figured out how to cultivate the bacteria in the laboratory from blood samples of infected people. They founded a company called Galaxy Diagnostics to handle the laboratory volume. For information on Bartonella testing used by Dr. Mozayeni’s Clinic, please visit http://www.galaxydx.com/web/human-health/test-descriptions/

I dislike the narrow definition of Lyme Disease as an infection of only Borrelia, because so often these infections go together. However, I think that this research is a big step. Hurray for Drs. Mozayeni, Breitschwerdt, and Maggi!

Best,

Laura

Lyme Disease Treatment Status

Hello to All,

I neglected my blog and email this summer. I suppose part of this is because I just wanted to enjoy myself and forget about being sick for a while (as much as that is possible). The other part is because I feel stuck, unmotivated, and frustrated. I’ve done hundreds of hours of research and feel that I know almost everything there is to know about this disease. I’ve been through almost 2 years of antimicrobial treatment and 1 year of serious detox before that. Though I’ve made a number of improvements, I’m still not well. In summary, my problems below the neck have improved considerably, but certain neurological problems have worsened.

I thought that this would be a good time to take stock of my healing progress. Here is the status on my symptoms:

Improvements:

  1. Headaches: lessened in severity and frequency, but still a problem 10 – 15 days per month
  2. Joint pain: gone
  3. Muscle pain: improved – occasional pain in right side of neck and shoulder ( I love Cryoderm topical for this)
  4. Irritable bowel: gone, or perhaps just being managed with magnesium and fiber?
  5. Depression: intermittent and milder (managed using exercise, 5-htp, l-tyrosine, and l-phenylalanine)
  6. Fatigue: improved from the past two years, but still a problem
  7. Vulvodynia: gone for months now
  8. Tooth pain: improved but still flares occasionally
  9. Food intolerance: much improved
  10. Chemical sensitivities: improved but still a problem
  11. Heat sensitivity: improved but I have to be careful
  12. Light sensitivity: started in 2011. Improved since then

Problematic or worsening symptoms:

  1. Dizziness/light headedness: a daily problem for me. This started with an episode of vertigo in 2011.
  2. Heart palpitations: a new problem that developed in December of 2012
  3. Anxiety: still a big problem, (especially when I get dizzy I tend to panic)
  4. Cognitive dysfunction: still a problem, especially decision making, organizing, and short term memory
  5. Insomnia: worsened in December

I summary, my symptoms still wax and wane. I have more pain-free days with good energy, very few days where I’m completely miserable and dysfunctional, lot of days where I just feel crummy and tired. The dizziness is my most disabling symptom at this time. I frequently cannot drive because of it.

So what the heck is going on?

My doctor ran some blood tests: ferritin, thyroid, thyroid antibodies, the usual blood work up, and a nutritional test called a Spectracell. My ferritin (iron storage) is rock bottom at 4.0, my thyroid is low, no thyroid antibodies (hurray!) and I have a few other abnormalities. I await the results of the Spectracell.

My new treatment plan:

  • Serious iron replacement
  • Boost thyroid with SSKI iodine. If not helpful, switch to thyroid meds
  • A new antimicrobial regimen using a tincture called Quintessence by Bio Pure. This contains herbs popularized by Stephen Buhner, including knotweed, stephania, andrograhis, red root, and smilax.
  • Teasel
  • Peony for blood

I’m starting very slowly, one herb at a time to determine tolerance. Wish me luck.

Until next time,

Laura