Sunday, May 22, 2011

Assaulting CIRS and ME-CFS

Whew!  After months of testing, my doctor (Alan Vinitsky) has determined that I have quite a number of infections.  While this is no surprise in ME-CFS, I'd always been one of those patients who tested negative for just about everything.  Over 16 years of seeing doctors in various time zones and on various continents (mostly N America), the only things found were HHV-6, EBV, and Coxsackie B, all at low levels, all but Coxsackie indicating prior, not active infection.

When I started getting energy transmissions from Trivedi, I'd seen the research reports of the anti-viral, anti-fungal and anti-bacterial impact of this energy on plants, animals, and human cells in vitro.  I  figured the impact in vivo on a living human organism, namely me, would be similar.  I had recently determined that Coxsackie had flared up at the time of my April 2010 relapse, resulting in stressful cardiac symptoms.  Two months of blessings, especially when in his physical presence for hours at the first Chicago retreat, my symptoms abated.

Now that it is almost a year later, one might hope all the infections were gone!  But instead, they are showing up.  Dr. Vinitsky is doing some unusually sensitive testing -- not always the standard labs -- but even using the standard Labcorp and  Quest and Genova (for stool), I'm now showing up with a long list of infectious species:

  • Lyme (through Pharmasan Lab's My Lyme ID, cytokine profile)
  • Mycoplasm pneumoniae
  • Coxsackie A (as well as B)
  • Blastocystis hominis (bowel)
  • Geotrichum species (bowel)
More tests are out for Lyme co-infections and mycoplasm species, but I had to draw the line at things not covered by my insurance.  So what if I have a smorgasbord of pathogens?  Don't we all?  Perhaps XMRV could be added to the list if I went through VIP labs. Does it really matter?

For me, the question is, do these results indicate whether I am getting worse?  Or getting better?  Do they indicate how to approach treatment?

Granted, the immune system is not doing the job it was designed to do.  Our expensive poisons (herbs, antibiotics, antifungals, antivirals) kill only a percentage of pathogens.  The purpose of taking them is to reduce the load so that the immune system can take over and do its job to free the body from infections.

Testing has shown that in ME-CFS patients, and in my case, the immune system is over-activated in some areas and under-activated in others.  NK cell activity is typically under-active.  Inflammatory cytokines are typically overactive.  

Many patients are experimenting with Gc-MAF, a powerful macrophage activator, to get the body to start addressing its many infections. There is a good discussion thread on this at the Phoenix Rising forum.

I don't have access to Gc-MAF right now.  The cost is high (through Dr. Cheney), and although lower through Dr. Meirleir, would require travel to Belgium.  Consequently, I am formulating a plan of attack that is affordable for me in the near future.

Phase 1:  Reducing exposure to fungus (including mold) and bacteria.
You wouldn't believe the stuff that grows inside a house when there is a damp basement or a water leak somewhere.  After reading for several months in Shoemaker's work and on the yahoo sick-building list, I've come to learn that mold is only a part of the problem, and visible mold is an infinitesimally small part of the problem.  To quote Jack Thrasher, Ph.D, a toxicologist and immuno-toxicologist, unhealthy indoor air also has:
Gram negative and positive bacteria. The Gram positive ones include Streptococcus, Staphylococcus, species of Bacillus as well as Actinobacteria (Streptomyces, Mycobacterium, Propionibacterium, and Nocardia). In addition it is not mold and their spores along with mycotoxins, but a host of contaminants produced by fungi and bacteria. Fine particulates less than 1 micron containing all of the microbial contaminants are present at concentrations that seem to about 500 times greater than mold spore counts. In addition, every home and building that I have tested has had endotoxins greater than recommended concentrations. These are synergistic with toxins of both fungi and bacteria.
The three R's of natural healing, the foundation for natural medicine, is 
  • remove
  • replace
  • restore  
 The removal phase now consists of cleaning every square inch of the house, washing everything washable in the house with soap and water and borax, vacuuming and dusting with Swiffer cloths, and disposing of lots of things that cannot be washed.  This has kept me very very busy, and David even busier because he is the one who has to do all the cleaning.

The results are great, but not yet spectacular.  However, my energy has doubled, my ability to stand has tripled, my sleep has improved, and my constant sinus problems have diminished.  

The problem remains that I keep sticking my long nose in things that turn out to be contaminated even though I have a perfectly lovely respirator on my bookshelf.

Surprise exposures were a very big problem at first.  I couldn't pull a book off the shelf without getting an inflammatory reaction of immune activation that included various symptoms such as hyperexcitability and sleeplessness, sneezing or coughing, swollen glands and/or sore throat and sinus pain.  It convinced me that something really was going on, something in my environment that was not good for me.

Now, after two months of REMOVE activities, I am more tolerant, but I am still reacting every now and then.

Last week  my husband did the last phase of cleaning, by going through the whole HVAC system, taking apart the furnace motors and AC coils and cleaning inside all the ducts.  I left town for a visit to my doctor (7 hours drive) and stayed with my mother.  She prepared for my visit by professionally cleaning her rugs, throwing out things, and cleaning every square inch of her 3 bedroom condominium apartment.  But although her place was clean as a whistle, I still got sick.  Her 15 year old building has suffered water damage from sprinkler systems going off in people's kitchens (which floods all the units below) and from water leaking into the exterior walls through cracked and dry window caulking.  

I arrived with a mild cold that my wonderful husband brought home as a bon voyage gift.  By the 2nd day at Mom's, I had trouble standing.  My inner voice -- which has become much clearer as a consequence of doing regular energy transmissions with Guruji Trivedi -- told me that it was something in the room where I was sleeping.  

The next day, I stayed away as much as I could, and felt better.  I was able to go down to the National Gallery of Art and get pushed around in a wheelchair through the Gauguin and Canaletto exhibits.  Although tired afterwards, I wasn't totally exhausted as I'd been in the past, even in the distant past (e.g. 2005) when I seemed to be doing much better on the surface.  I stayed on an air mattress the following night in a different room and had no problems with respiratory issues and standing intolerance.  It was great to learn that next morning that  no moisture problem in the walls in that particular room had been found by the inspector. 

Phase 2: Avoidance 
The second part of REMOVE for me has been to avoid going into buildings where I know there has been water damage, and to leave any place that has a moldy smell immediately. This has meant not visiting friends, avoiding the Kenyon College library and coffee shop, the Mt. Vernon public library, my therapist's office, my chiropractors office, and any restaurant in an old building or with a basement.  

In the past, this would have seemed a very lonely existence. But Trivedi's blessings have helped me immensely in this regard.  I am quite content to be a hermit, and delighted to have the energy to do things around the house like laundry and baking.  I'm enjoying my own company, and my mind is at peace.  

Eric Johnson has written a lot about extreme avoidance.  He has a chapter in Shoemaker's book and an e-book of his own put together by Lisa Petrison from posts he's made on various online forums.  I'm hoping I won't have to go to such extremes.  Many individuals become less sensitive to the spores, toxins, bacteria etc. that once made them sick. Time will tell how far I have to go in terms of avoidance. 

I do, however, have clear inner guidance that I should be selling my home and leaving this pretty community in Ohio.  Our house is now listed, and we're waiting for its new owner to come find it.  We're going to seek paradise in a drier climates out West.

Phase 3:  Getting the biotoxins out of the body.  

Once you're not taking any more in, it's often necessary to help the body get rid of those that are in there.  The reason for this is that they keep inflaming the immune system, which then attacks them by raising inflammatory cytokines, but doesn't manage to pull them out..

Shoemaker's protocol calls for removing biotoxins with CSM (cholestyramine) or Welchol.  It's not advised to do this until the environment is clean and a person is no longer getting exposures.  With the HVAC cleaned, I'm waiting for things to settle.  I still have a few more areas of books and storage closets to go through, which could take me at least another month, maybe longer.  

Because CSM is hard on the gut, my inner voice tells me to plan an assault on gut dysbiosis before I begin a course of it.  I'm planning this assault, assembling a mixture of herbs that are antibacterial, antiviral, antifungal, as well as products that help restore the healthy environment of the gut.  All these organisms, bowel and general circulation, create their own biotoxins, which adds to the body burden.  But I'll reserve this discussion for another post.   

In the interim, I'm using some natural products known to bind biotoxins which include
  • Modifilan 
  • Chitosan
  • 1/2 tsp of activated charcoal
  • daily coffee enema
  • butyrate
I'm eating better, and have included raw goats milk, raw sauerkraut, and raw eggs in my diet along with hempseed oil and coconut oil.  Some of these foods help reduce cholesterol, others add healthy bacteria and alkaline minerals to support the body's recovery.

Dr.  Vinitsky wants me add gentle exercise and far infrared sauna, but I'm not drawn to either right now  A little yoga feels good, especially since I couldn't do any yoga during the worse phase last December, but it isn't calling to me.  Nor do I feel drawn to go into a sauna with outside temperature in the eighties and the sun beating down so hard on the south deck that the soles of my feet burn. 

Thanks to Trivedi's blessings, I neither feel guilty nor impatient.  I know the time for exercise will come when my body is ready.  Similarly, when ADH recovers from its nadir of <1  (ADH is the hormone that regulates how much salt and water the body hold and the lowest normal value is 8) I should be able to undertake a sauna without getting weak from dehydration.  

I know many people claim great benefits from sauna, especially FIR sauna.  But I also know many who get weakened from them.  I have used them in the past (although never owned one) and gotten very little benefit.  I strongly believe that, if you are considering a daily practice of sauna as a method of detox, to have your doctor check ADH and osmolality first.  If you are very low, consider and alternative therapy for releasing stored toxins.  

The one question I have is, should I try to address the Lyme and viruses before I try taking CSM?  Or will the immune system remain so imbalanced with biotoxins on board that all elimination protocols will fail?  

The answers will come to me soon.  Perhaps they'll be only for me, not for others.  That's the benefit of the blessings from Trivedi.  We're all unique, and what works for me may not work for another.  My inner guidance, combined with the knowledge I glean from study and the knowledge and experience of my doctor, will lead me forward.

6 comments:

  1. Hi, I used to use Dr. Vinitsky as well, but not anymore. Is there anyway that I can contact you? Or can you email me? My name is Mia Harrod and my email is: miaharrod@gmail.com
    Thanks!

    ReplyDelete
  2. I am interested in your experience with Dr. Vinitsky. How long have you been seeing him? Have you tried his methylation protocol? If so, how did it work for you?

    I've had CFS and MCS for many years and have seen Dr. V a few times over the years. I tried the methylation protocol for a few days, but had such a bad reaction (and it kept me awake at night)that I ended up stopping it. I felt like he didn't explain things in a way I could understand and it's only been recently, after reading other materials on methylation, that I understand that it can take a while for the protocol to kick in and symptoms are normal.

    I'm deciding whether to try it again and am wondering what your experience was. Did you have a detox reaction after starting the protocol? He told me I was the only patient he's ever had who wasn't able to do the protocol, which I'm not sure I believe.

    Thanks very much!

    Carrie (carriestoehr@hotmail.com)

    ReplyDelete
  3. Janis, I'm shocked you're still following that fraud "Trivedi". It's quite clear from this post that his 'healings' haven't exactly worked.

    ReplyDelete
  4. "...in my case, the immune system is over-activated in some areas and under-activated in others.... Inflammatory cytokines are typically overactive."

    The combination of the sole anti-inflammatory omega-6 lipid (gamma-linolenic acid) with the three long-chain anti-inflammatory omega-3 lipids in fish oil have produced remarkable results. The ratio is important (more GLA than the SA/EPA/DHA triad), as well as taking more effective anti-oxidants than the Vitamin-E that ordinarily comes with these capsules. Say, 3 1000mg borage oil vs 1 1000mg fish oil.

    The catch is that it takes a fairly long time to work (figure 2 1/2 months before starting to kick in, probably reaching full effectiveness in 6 months.

    Some supporting references:

    http://www.ncbi.nlm.nih.gov/pubmed/7874864

    http://www.ncbi.nlm.nih.gov/pubmed/15214949

    http://www.ncbi.nlm.nih.gov/pubmed/19437028

    http://www.ajcn.org/content/87/2/498S.full.pdf+html


    FWIW, GLA may also have anti-viral qualities. (YMMV)

    http://www.ncbi.nlm.nih.gov/pubmed/316494

    http://www.ncbi.nlm.nih.gov/pubmed/2270749

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860620/pdf/122.pdf

    ReplyDelete
  5. I am delighted that Dr. Vinitsky has finally come to understand that infections may play a role in CFS. When I consulted with him several years ago, he only agreed to testing after I pleaded with him, and then dismissed the findings. When the methylation protocol didn't work, he blamed the patient (me).

    ReplyDelete

Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at drjanisbell@gmail.com I cannot give medical advice. If you want to suggest a product or therapy you think I should try, please let me know if you have used it, what you used it for, and how it helped you.