Tag Archives: 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 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

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

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

Lyme Disease Far More Common Than Previously Known

Hello to All,

This is probably not news to my fellow Lyme Disease sufferers out there, but I’m happy to see that this disease is getting more exposure in the media. Even the stalwart CDC is admitting that there are more cases than they thought.

Here is a link to an article from NPR.org

http://www.npr.org/blogs/health/2013/08/19/213544183/lyme-disease-far-more-common-than-previously-known

Best,

Laura