Tag Archives: chronic fatigue

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 Recovery and Rehabilitation

Hello to All,

I haven’t written in a while. Honestly, I’ve been lazy and unmotivated. I’m also in a treatment slump. I’m backing off treatment for a while to enjoy summer. It’s nice not to feel awful from the herx reactions, but I’m also not making much progress, either. I’m just back to feeling intermittently crummy and decent in daily/weekly cycles.

I’ve been thinking lately about what this disease has done to my life. I stopped working full time almost three years ago. I’ve done intermittent contract work, but even that was quite challenging. My problems are mainly neurological: chronic headaches, dizziness/vertigo, balance problems, insomnia, cognitive problems, depression, and anxiety. I’m one of those people who doesn’t look sick. This is a double edged sword. It’s nice to look good, but most people don’t see that I’m ill, so they don’t take it seriously. I’ve only begun to take my condition seriously since my diagnosis in October of 2011.

Neuro problems make it hard to work on a computer for any length of time. It’s difficult to focus on anything, for that matter. I exist in a fog; conscious, but disconnected from the world. My days consist mainly of puttering around the house alone with minimal productivity.  Even on days with low pain levels, I have little energy or motivation.  My brain feels gummed up. I have memory problems, and my skills have gotten rusty. I simply cannot function at the high level I used to 7 – 10 years ago.

When I started feeling better last year I tried doing some of the things I used to do, both personally and professionally. I tried making some art. I soon realized that my muscle memory had faded along with my technical skills. I struggled with project management, technical writing, and editing. This was very upsetting to me. I now realize that I can’t just pick up where I left off. I need rehabilitation and remediation to rebuild my skills on many levels. I need to take classes or find mentorship to accomplish this. Unfortunately, I have little money for these things now, so I’m not sure how to go about it. I feel stuck. But at least I now accept the reality of my situation.

Some of you are probably familiar with the Stages of Change Model developed by Prochaska & DiClemente in 1983. The stages discussed in their change theory are:

  1. Precontempation (not yet realizing the need for change)
  2. Contemplation (acceptance but not ready yet)
  3. Preparation (develop a plan of action)
  4. Action
  5. Maintenance

Whenever I feel stuck, I find this model useful to get me moving. I’m in the Contemplation stage for this particular issue. I know what I need to do, but have not yet figured out how to go about it. I also have a ways to go for medical treatment, so I don’t want to be too hard on myself. The fact is, I have a sludge of infection and toxicity affecting my brain. But I’m growing impatient! I’m tired of existing in an unmotivated, unproductive fog. I have a good brain and I want to use it to its fullest capacity.

To tease the problem apart further, my treatment is stuck because of poor detoxification ability (confirmed by genetic testing). If I can figure out how to process out the toxins released by dying microbes, I can progress further. This is my next plan of attack.

One of the things I love about writing is how it helps me to solve problems. I may feel lost when I start writing, but I usually end up with a plan!

Laura

#Lyme Disease Treatment Update for May: Feeling Well

Hello All,

After a miserable few months this past winter, I’m feeling good again. I believe that some of the medications I took made me ill, mainly the Byron White ABART and ketoconazole. So, how do we know the difference between medication intolerance and a true herx response? I think often, we don’t.

If you feel unbearably bad on a medication, tell your doctor. Extreme herxing and detox reactions cause runaway inflammation and can be both painful and damaging to the body. Always be sure your detox pathways are supported.

So I decided to see a new doctor and get another opinion on my course of treatment. Just having a fresh set of eyes on a problem can make a big difference. The first thing she did was have me create a timeline of my treatments and symptoms. This was incredibly valuable because it helped me see what I was doing last year that helped me feel better.

I realized that I was taking a high dose methylfolate supplement (Deplin, 15mg daily), and a high dose of butyrate (8 caps of 600mg daily) last summer. I went back on both of those.

She started me on a Chinese herbal combination: minor bupleurum formula, for liver stagnation, and also Ceanothus (red root) for babesia and bartonella and lymph drainage. She also put me on Pau d’arco for candida, which unfortunately gave me indigestion.

After about a month my pain and dizziness subsided. I feel much better! Almost normal, in fact.

I just received my Gene SNP test results back. It’s no surprise that I have the MTHFR mutation, and detox pathway 1 and 2 impairment. I see my doc tomorrow and will discuss my results with her and learn what they really mean.

Meanwhile, I’m still dealing with at least 8 days of bad headaches per month, MCS, insomnia, depression, and fatigue. My doctor suggested that I’m at a good point to try biofeedback for these problems. I met with a practitioner who does neurofeedback and I’m going to try it as soon as I have the money.

More on SNP’s and neurofeedback next time.

Best wishes to all,

Laura

Lyme Disease and Candida Infections

As many of us with Lyme Disease already know, we are usually infected with more than one kind of bug. Today, I want to talk about what I’ve learned about Candida and my efforts to overcome it.

I believe that Candida is one of my worst problems, leading to gut permeability, food “allergies”, inflammation, and chronic headaches. I first figured out that I had a Candida problem in 2008 when my research on headaches and food allergies led me to this as a probable cause. After trying a few natural supplements and probiotics to no avail, I started taking oral Nystatin powder. Bingo! I had my first remission of headaches and misery in years. I was able to eat a wider variety of foods. But the effects were short lived. It seems the effectiveness of Nystatin wore off within months.

After trying numerous other natural and pharmaceutical antifungals and clays for gut detox, I had only slight and short-lived relief. Then my doctor put me on Butyrate in 2012. I didn’t realize it at the time, but that was probably a major contributor to my improved health last year. That, along with NAET/BioSET treatments, toxin binders, and high doses of methylfolate to improve my detox system.

I discussed Butyrate in a previous post. Not only does it mop up excess ammonia, quell food allergies, and soothe the gut, but it actually disables the more virulent hyphal form of Candida. Following is some research I came across discussing the role of short-chain fatty acids (SCFA’s) on gut health and Candida.

The American Society for Microbiology provides free access to full text articles on Candida and other fungal infections. Here is a link to an article in the Journal of Infectious Immunology from 2004 titled Regulation of Candida albicans Morphogenesis by Fatty Acid Metabolites: http://iai.asm.org/content/72/11/6206.full.pdf+html. Briefly, this article talks about how fatty acids disable the conversion of Candida albicans into their more virulent hyphal form that burrows into tissues.

And here is link to another article in the journal Eukaryotic Cell titled Conjugated Linoleic Acid Inhibits Hyphal Growth in Candida albicans by Modulating Ras1p Cellular Levels and Downregulating TEC1 Expression: http://ec.asm.org/content/10/4/565.full.pdf+html. The gist of this article is that CLA stops the virulent hyphal form of Candida.

In my ignorance and efforts to save money, I gradually stopped taking Butyrate, or only took it sporadically. I started it again at a high dose of 600mg, 8 caps per day, and have noticed a reduction in food-related headaches. So in order for me to eat enough to survive, I take 2 capsules of activated charcoal or clay 30 min before a meal, and 4 caps of butyrate at the end of a meal. Hopefully, this is a short term fix until I can actually kill off my gut infections for good.

My doctor also has me on Pau d’arco, a South American herb known for its antimicrobial properties. I make it into a tea and drink it twice per day. It tastes nice, like root beer. So far it has no side effects for me at this dose. Lapachol is a compound in Pau d’arco that is known to kill Candida. You can look this up in PubMed.gov and come up with journals discussing the research. Here is one source: http://www.ncbi.nlm.nih.gov/pubmed/7938274.

My next step with Candida is to try oxygen therapies, like ozone or oral liquid oxygen products to see if I can really kill it off instead of just keeping it at bay with fungistatic compounds and diet.

Best,

Laura

#Lyme Disease and the Methylation Cycle

I’m feeling better than I was last week. My intense detox has subsided, and I’ve resumed my usual relentless research of this miserable illness. Here is yet another piece.

The importance of repairing the methylation cycle in treating Lyme Disease.

Lyme Disease may start out as an infection, but left untreated, it causes many systemic imbalances and deficiencies in the body. Effective treatment of LD must include both antimicrobial therapy and support/repair of a number of the body’s systems. The methylation cycle is one of those systems that becomes impaired by LD.

What is the Methylation Cycle?

The methylation cycle is a biochemical cycle that’s involved in many of the body’s functions. When the cycle is broken, important functions are impaired. In particular, glutathione (our body’s master anti-oxidant and detox agent) is depleted. Rich van Konynenburg, Ph.D., an independent researcher who has done much research on ME/CFS syndromes, believes that glutathione depletion causes many of the problems in ME/CFS. Other prominent LLMD’s, such as Dietrich Klinghardt, also believe that this cycle must be functioning before recovery from Lyme Disease is possible.

Dr. van Konynenburg identified a number of functions involved in the methylation cycle:

  • To produce vital molecules such as Co Q-10 and carnitine.
  • To switch on DNA and switch off DNA. Note: When viruses attack our bodies, they take over our own DNA in order to replicate themselves. Disability of this function makes us more susceptible to viral infection.
  • To produce myelin for the brain and nervous system.
  • To control the liver’s synthesis of glutathione (essential for detoxification).
  • To control the sulphur metabolism of the body, (also important for detoxification).
  • As part of folic acid metabolism.

If the methylation cycle doesn’t work, the immune system, the detoxification system, and the anti-oxidant system all mal-function. Consequently, our body’s ability to repair is reduced.

A great website for information on ME/CFS (Myalgic Encephalomyelitis and Chronic Fatigue Syndrome) and Dr. van Konyenburg’s research is http://phoenixrising.me/.  Also see http://www.drmyattswellnessclub.com/B12MECFSarticle.htm.

Here is a fairly simple diagram on the Methylation Cycle from the Linus Pauling Institute

Methylation Cycle from the Linus Pauling Institute

Dr. Amy Yasko is another pioneer in methylation research and its role in autism. Here is a diagram from her website that helps illustrate the functions of the methylation cycle:

methylation diagram Yasko

http://www.dramyyasko.com/methylation-diagram/

Deficiency of this system is now implicated in autism, chronic fatigue syndrome, Hepatitis C, Gulf War Syndrome, and in Lyme Disease. Perhaps this is a factor in many illnesses we do not yet understand.

Treatment

The cornerstones of treatment are detoxification and specific nutrients:

  • activated forms of vitamins B12
  • activated folic acid (folate)
  • glutathione
  • phosphatidyl serine

My doctor has me on moderate doses of methylated B12 and methylfolate to start, as well as L-carnitine and Co Q 10 for energy. Recently, my energy has increased (I no longer need a nap every day) and I no longer need a thyroid supplement. Starting slowly is key, as repairing the methylation cycle puts the immune system back “on line”, which can lead to intense detox/die off reactions.

Once again, we find another piece of the already complicated puzzle of Lyme Disease.

-Laura

#Lyme Disease and Biotoxin Removal, Part Two

Hello to All,

After checking with my doctor, I have been following Richard Loyd’s detox protocol for about a month now. His protocol consists of absorbing bile toxins from the body with Cholestepure, doing foot detox with ionic foot baths and foot patches, and removing mold toxins from my home with a diffuser and detox oil.  See Dr. Loyd’s paper on mold detox at http://www.royalrife.com/mold_toxins.pdf.

So here is my report: My pain level is significantly reduced. I have little body pain and fewer, milder headaches. I currently have no food reactions. I am able to eat a wide variety of foods with no headaches. In fact, I’ve been eating too much and I’ve gained more weight than I needed. In addition, I have not observed side effects from treatment so far.

I have known for some time that when I’m flared up, all my symptoms flare, not just pain. When pain goes down, so do my other symptoms. I used to think these symptoms just co-existed. I now understand that reducing inflammation causes a reduction in my other symptoms of depression, anxiety, fatigue, and insomnia.

I will certainly not say that Loyd’s protocol is responsible for the reduction of symptoms. It could be a coincidence. If my doctor approves, I will continue with this toxin reduction protocol and restart anti-microbial treatment to see what happens. I’ve had temporary reprieves before. We’ll see how long this one lasts.

I know that this is a long road, and there are more challenges to come. But I’m encouraged by this reprieve and very pleased to be feeling better!

Good luck to all,

Laura

#Lyme Disease and Biotoxin Removal Protocols

So after a tough month of detox symptoms following a new anti-microbial regimen, I decided to research an improved detox protocol for myself. I am cleaning up my diet (again) and taking time off from killing the infections until I can reduce my existing toxic load and improve my body’s detox system.

My understanding of this illness has deepened considerably in recent months. Chronic Lyme Disease is not a stand-alone condition. It is a complex interaction of impaired physiology, biotoxin load, and immune dysregulation. The infection is only a part of the problem. Borrelia and other pathogenic microbes are opportunistic and stubborn infections that will wreak havoc in the already impaired body.

My research has led me to the work of two researchers who advocate removal of mold toxins from the body and the immediate environment as the path to regaining one’s health: Ritchie Shoemaker, MD, a family practice physician, author, and researcher, and Richard Loyd, PhD, a researcher and nutritionist. According to these pioneers in the field of biotoxin related illness, treating mold and removing existing toxins from the body is vital for a full recovery from Lyme disease.

Both of their protocols use an intestinal toxin binder, such as cholestyramine or Cholestepure. They both work by binding toxins in the intestines that have been released from the gallbladder. Toxins are stored in fat cells. They are processed through the liver then on to the gallbladder until a fatty meal causes the gallbladder to release bile and the toxins into the gut. Without cholestyramine or other toxin-binding agents, they can re-circulate back into the blood stream. This is a self-perpetuating cycle. Even if you kill off pathogenic microbes in the body, their toxins continue to circulate in people with ineffective detox pathways. The gist of treatment is threefold: Avoid, Prepare, and Remove.

Note: Cholestyramine is a prescription bile acid sequestrate intended for use in lowering cholesterol. It has also has been found clinically to be effective in relieving the symptoms of toxic mold syndrome. It works by binding to the mold toxins in the gut and removing them from the body. Cholestyramine has been used for decades in mainstream medicine to lower cholesterol. It is also used by the U.S. military to remove neurotoxins after exposure in combat. It has an excellent safety profile because it is not absorbed into the blood stream. The most common side effects are constipation, heartburn, and nausea. Dr. Loyd suggests a product called Cholestepure as a natural, gentler alternative.

CAUTION: Lyme patients, or people with any severe biotoxin illness  may not be able to tolerate any cholestyramine at all. Starting a toxin binding protocol such as this can lead to intense detox (Herx) reactions. Talk to your doctor. And prep with a good anti-inflammatory protocol BEFORE commencing a protocol like this.

Step One: Avoid further exposure to mold toxins

Remove yourself from toxic environments, or remove the mold from your environment. See Dr. Loyd’s website and paper on mold http://www.royalrife.com/mold_toxins.pdf for mold removal strategies, including diffusing mold killing essential oils with a diffuser into your car, garage, and basement. Read Dr. Shoemaker’s books: Mold Warriors and Surviving Mold for detailed information.

Step Two: Prepare your system for the detox storm to follow

Cholestyramine can cause unbearable detox symptoms (inflammation!) in chronically ill patients. Once you start processing out the toxins, more are released from their safe hiding places. Though a number of physicians (including Dr. Klinghardt) once prescribed a short course of a drug called Actos to mitigate detox symptoms, this drug is now linked with increased risk of bladder cancer. This drug can also be problematic for those with insulin problems and low leptin levels.

See http://www.survivingmold.com/docs/biotoxinpathwayritchieshoemakermd.pdf for helpful diagrams of the body’s chemistry to better understand the inflammatory cycle and detox pathways.

Dr. Shoemaker now advocates preparing the body with very high doses of fish oil as a natural anti-inflammatory. The targeted dose of fatty acids is 2.4g EPA and 1.8g DHA daily for 8 days prior to commencing binding therapy. This can be 5 or more capsules of high potency fish oil!

Dr. Loyd suggests one of the following products: UltraInflamX, Kaprex, KaprexAI, BioticsKappArrest. They inhibit NF-kappaB, a messenger that causes the release of inflammatory cytokines. They are safe, natural alternatives to Actos.

In addition to fish oil, my doctor has me on a concentrated, highly bio-available form of turmeric called Meriva.

To my surprise, Dr. Loyd (and also noted LLMD, Dr. Steven Harris) also suggests foot detox to draw out toxins. He suggests electronic foot detox baths and foot detox patches. See http://www.royalrife.com/mold_toxins.pdf. Honestly, I thought foot detox was pure B.S. until I read his website. Scott Forsgren from www.betterhealthguy.com has also used the Japanese-made patches with success. Go to his website for brand suggestions, since there are likely many ineffective ones out there. This is supposedly a gentle toxin removal treatment without side effects. It may be helpful to undertake this before commencing with toxin binding.

Part Three: Bind the Toxins

Mix one packet of cholestyramine in water four times daily between meals, preferably 30 minutes before a meal.

  • As an alternate, Welchol is a gentler pharmaceutical binding agent that can be used.
  • As a natural alternate use 1 – 3 capsules of Cholestepure, three times per day in between meals.

Shoemaker requires a low sugar, low amylase (starch) diet to aid in the process and reduce detox reactions. Duration of treatment is anywhere from two weeks to several months, depending on the toxic load.

In Conclusion

Please be careful when taking any new medications/supplements or implementing a detox protocol. It’s tempting for desperate, chronically ill people to play doctor on themselves. But detoxing can have serious side effects, including runaway inflammation, which is not only painful, but is dangerous. Get professional help. Do your research. And go slowly and carefully.

– Laura