Wednesday, November 17, 2010

Introduction

This blog is about one person's experience searching through various combinations of natural medicine and cognitive techniques to find solutions to the devastating ME/CFS (or CFIDS) illness complex, including Lyme Disease. I have received a lot of requests for reports on what I have learned while successfully treating my own case. If you are reading this because ME/CFS and/or Chronic Lyme Disease has taken over your life, I hope you will find some insights here.

This blog is an attempt to share what I am learning about ME/CFS and Lyme Disease. Therefore my purpose is informational and educational. I am in no way diagnosing or treating any illness, nor prescribing any particular therapy (my Disclaimer). If you have questions, please send me an email.



More Introduction

Honestly, I wish some other topic would be so important that I would write a blog about it, maybe my favorite music or how I love good literature. Sadly this disease has taken over my life to a large extent. But fortunately I have had some successes, and mostly stopped the progression of the illness. In fact I have experienced some improvements, I was partly bedridden for several years, but now have recovered limited mobility and some functional improvements.

This ME/CFS-Lyme blog begins in December, 2004, when I experienced my first dramatic reversal in over four years when I started the Salt/C protocol. I also discuss a few ideas about what might be causing ME/CFS and Lyme. In late 2005 I experienced more improvement, possibly from the continuing Salt/C, or some ongoing holistic work. But I also had some setbacks, and stopped salt/c. In 2006 I started having great success with EMF blocking. In 2008 I began using a self-talk process to address adrenal-amygdala looping that I believe is caused by the presence of neurotoxins. To get the full content of the blog you must just start with the older posts and read them all. Since I do not post often, that is not as difficult as it may sound.

Part of the purpose of the blog is to give hope to others, and to share what I have learned and am still learning, in my quest for the solution protocol to ME/CFS and Chronic Lyme Disease symptoms. I explore a wide range of health issues, but try to stick to the goal of finding an effective treatment plan for this disease.


Read more!

A Multi-B12 Protocol that Works

One of the sad facts of life with Lyme and/or related CFS co-infections is that these infections are known to deplete B12, and subsequently down-regulate multiple biologic processes dependent on B12. So over the past few years I have tried various B12 therapies, along with everything else reported here (salt/c, MMS, self-talk, etc.). However, none of those B12 approaches worked for me, although a series of methyl B12 injections in 2007 helped with energy while I relocated from the moldy east coast to the dry mountain west. I should probably post about that experience separately, getting to a lower mold and drier climate definitely helped my CFS symptoms. But for some reason I did not connect the dots about the B12 at that time. So for another two years I remained B12 depleted... But not anymore, and B12 is definitely helping this time. The difference is a gradual ramp-up B12 protocol that uses multiple forms of B12, along with methyl form of folate, other B vitamins (particularly B6), and several key supplements that support the methylation cycle. The result is calming of the nerves, better detox, and most importantly, better mental clarity, focus, endurance, and more energy. This B12 protocol is a combination of several other B12 protocols. Of all the protocols I have tried over the years and reported here, this is undoubtedly the best so far. I can now work part-time again, even performing mildly demanding mental work. Post-exertion malaise is significantly reduced. And these improvements appear to be stable, now for about six months. I have gone from 25% functional to 40% functional and at times perhaps 50%. This response is huge, the most improvement I have had in over 10 years. But the protocol is more than just taking B12. I am also supporting the most critical metabolic cycles that utilize B12. Read on for the details!


(continued)
This is a long post, and I realize some people might not be able to read through it very quickly. So here is the short summary. I have found four relatively inexpensive supplements that together seem to address many of the neurological problems in Lyme/CFS (which I will just call CFS from here on). One of the supplements is the biologically active methyl form of B12. These four supplements have helped multiple people, including myself and several family & extended family members. And the four supplements seem to be synergistic, taking them separately is far less powerful than taking them as a group. Being encouraged by the success of those four supplements, I added two more groups of supplements that support the B12 metabolism, including several critical antioxidant vitamins, minerals, super foods, and additional forms of B12. These all seem to have helped improve the effectiveness of the initial four supplements and in fact may be important in allowing the full ramp-up of B12 doses.

The Goal - Full Restoration of B12 Levels
My goal is to eventually be able to take a biologically equivalent dose of the active forms of B12 (both methyl and adenosyl). In other words, this protocol accepts that CFS bodies are not processing B12 properly and therefore the protocol seeks to supply all the active form of B12 that the body needs. However, this is easier said than done. With the B12 depleted, only a trickle is in the body, just enough to sustain life. And as we begin restoring that B12, the body tries to restart many biological processes that have been in hibernation. This creates a high need for certain nutrients that are generally depleted in CFS. Therefore the protocol includes other critical supplements to support the core four, including two other forms of B12! Taking all of these supporting supplements has been important in allowing us to continue to increase the dose of B12, in pursuit of the goal of full biological replacement of the depleted and missing B12.

The Theory Behind the Multi-B12 Protocol
The theory behind this protocol is that the metabolism of B12 has been blocked somewhere. B12 metabolism includes a complicated intake, transport, activation and recycling process, making B12 processing a somewhat fragile part of our metabolism. But B12 is critical for our health, B12 is involved in hundreds of biological processes. Unfortunately B12 can be easily blocked at any step in its intake, transport, activation, recycling, or utilization in the many metabolic processes. The result is that there are many ways B12 can fail in the body. So rather than take many expensive tests and try to find medical or research professionals who understand B12 metabolism and can narrow down my specific B12 problem (there are only a handful of experts and they are expensive), I decided to follow the advice of several well informed CFS patient-researchers and bypass the entire B12 intake-transport-conversion-recycling process by supplementing the active forms. So this protocol is all about getting the activated forms of B12 into the body, bypassing the blockages to B12 utilization, wherever they may exist in the metabolism, and supporting the re-starting of all the processes that are hibernating or on hold due to B12 depletion. And that approach is definitely working.

Early Results
How well is this working? Over the past 8 months I have experienced a significant improvement in my longstanding CFS illness due to this intensive B vitamin protocol. I have gone from being able to work 1-2 hours per day and rarely leave the house, to sometimes working half days and being able to go places again for a few hours at a time, with little post-exertional malaise. I do still need rest breaks during the day and must be careful about over-exertion, but the shift is dramatic. I feel like I am back in the 'real world' again, at a lower level of functioning than before my illness, but no longer a complete prisoner to CFS.

My adult daughter with CFS is also experiencing significant improvement on the same protocol. Over the years we have tried various treatments including both traditional drug medicine as well as alternative nutritional and herbal medicine. We have had only very small gains from past treatments. But what we have both experienced the past few months goes beyond anything we have tried before. In my case I have regained the ability to perform mentally challenging tasks, I now sleep soundly through the night and wake up feeling refreshed (usually I have had poor sleep and wake up often, and in the morning feel very tired), and can tolerate foods better, including some carbohydrates that have bothered me in the past, and also can perform low-level physical labor without the usual post-exertional malaise. I can now stand up and walk around again without constantly looking for a place to sit down. Also, I am now working part-time, something I have not been able to tolerate the past 5 years. And the improvements are steady and continuing. There have been some neurological symptom flare-ups but they usually do not last long and generally seem associated with detoxification, immune activation, or starting-up of dormant metabolic processes. Over time the small setbacks have usually been followed by increases in energy, and in fact I have noticed that I tolerate these CFS symptom flare-ups better than before, have enough new energy to get through that without having to stay in bed all day.

The Research Behind the Protocol
The basis of the B vitamin protocol we are following is research into the role of blockages in the methylation cycle in CFS. This includes the folate cycle and methionine cycle. The theory for the protocol is that a B vitamin deficiency, particularly B9 (folate) and B12 (cobalamin), is either resulting from, or causing, an error of metabolism leading to blocks in the methylation cycle. These blocks cause depletions of critical energy, immune and neurological resources, and in theory can produce all the symptoms of CFS and related disorders. Explaining methylation in detail would take about 40 pages, but the quick explanation is that methylation is to the body what Taxi drivers are to New York City. Critical elements in the transport, and processing of many different molecular passengers in the body.

The nutrients I selected are those that are both theoretically depleted in CFS, and also readily available and affordable. These nutrients are factors in the suspected dysfunctional parts of methylation (folate/methionine) cycle.

Credits for the protocol
This protocol is original, but parts are borrowed from work by others in the CFS patient-researcher community (Dr Vinitsky, Amy Yasko, Rich Van Konynenburg, and a recovered CFS patient 'Freddd,' who I have consulted with over the phone but prefers to be anonymous). Each of these researchers has added important information for this protocol, and those familiar with those protocols will see that. I have also learned that this approach has much in common with the recommendation of Prof. Martin Pall for treating nitric oxide imbalances (the NO/ONOO- hypothesis for CFS). However, this multi-B12 protocol is not strictly following any of those other protocols. This protocol emerged from a careful trial and error process with several CFS patients (including myself and both immediate and extended family members with varying degrees of CFS), along with close study of the basics of the methylation cycle, which showed me that a few important parts of the cycle were not being supported by each of these other protocols. In addition, I am constrained financially to finding an affordable protocol. So this is an attempt to construct a 'real world' workable combination based on the work of these helpful researchers. I am grateful for the willingness of six family and extended family members to try out parts and in one case the full protocol along with me. Their response has encouraged me that this approach is 'on the right track' for CFS and the related conditions.

Could B12 Depletion Produce CFS?
The reason for the B vitamin problems are unclear, and may be due to a combination of genetics, infections (Lyme, enterovirus, HHV6, etc), toxins, digestive dysbiosis, enzyme problems, loss of intrinsic factor required for B12 absorption, chronic stress, or even hyper sensitivity to environmental factors such as mold and EMF. In fact all of these can be connected with both CFS and B vitamin deficiency (particularly B12). In addition, several infections proven in research to be common in CFS are known to deplete B12, such as Lyme bugs and gut protozoans. Some medications also deplete B12 including SSRIs and tetracyclines.

At first I did not believe something as simple as a missing vitamin could cause CFS, but a little research showed that in fact B12 loss can cause severe diseases such as pernicious anemia. The book 'Could it be B12?' by Pacholok & Stuart helped me understand the significance of B12 problems, and how many different conditions it can cause. B12 is involved in hundreds of biological processes and a deficiency can cause a wide variety of problems, making B12 problems very difficult to track down. I recommend that book to anyone who has chronic health problems that doctors can not explain, to help them either identify or rule-out B12 deficiency.

The Multi-B12 Protocol - Stage 1
Now the protocol itself. The protocol is progressive, eventually utilizing multiple forms of B12 and also a few co-factors essential for the B vitamins to work. The following are the core supplements and the brand and dose we are using. The supplement manufacturer/brand may be critical, these are recommended by many people. I have tried other brands of many of these supplements without this positive effect. Also, I believe all the supplements work together. These are all nutrients required for key stages of the methylation cycle. The B6 is important in getting the full effect, particularly helping calm the nerves. Based on experience with multiple people using stage 1, this should be well tolerated by many CFS patients. I am one of the more sensitive patients, have a hard time with many drugs and supplements, and I have a well documented heavy metals problem including mercury, but have had no problems with stage 1.

1. Active B12 (methylcobalamin), by Jarrow. This type of B12 is active form and supports methylation, is a co-factor in folate metabolism, a co-factor in glutathione production, and also a scavenger. Each person must find their tolerance level for this, I now use a half of a sublingual 5000 mcg tablet 2-3x daily, but had to start with just one quarter of a 1000 mcg tablet (which is 250 mcg) daily and work up to the higher daily doses gradually. There are other brands of methyl B12 that can work, but many are lower-strength. Enzymatic Therapy's product is pretty good, and we had some success with the Vitamin Shoppe generic brand, but nothing compares with Jarrow. The Jarrow product is almost as powerful as Methyl B12 injections (based on my personal experience with both).

2. Ester-C, by American Health. This Vitamin C is slow-release and supports the adrenals as well as being essential to the methylation cycle. I take 1-2 tablets (500-1000mg) daily, in the morning and optionally afternoon if tired. This formula seems to do more than much higher doses of other brands of Vitamin C.

3. Magnesium Chloride by Alta Health. Magnesium is often depleted in CFS (particularly with Lyme co-infection), so supplementing just makes good sense, even without the methylation connection. I take one tablet daily, usually in the morning. The chloride form is usually well absorbed and is a critical co-factor in methylation. This also seems to help digestion.

4. B6 by Solgar (250mg) or Nature's Way (100mg). B6 is critical to B12 metabolism and is used in the methylation cycle. One capsule of Solgar or 1-2 of Nature's Way per day. The Solgar brand is more expensive, but also higher dose. I used Solgar for several weeks and am trying the lower-dose Nature's Way product now, as it is more affordable. There is a small but noticeable difference, Solgar seems a little better, but I don't know yet if that is due to brand or dose differences. Some people report tolerance issues with B6, so those who suspect that should probably start with lower doses. I have had no trouble with any dose in this combination of supplements and believe the B6 is being utilized properly in this combination.

Within 48 hours of starting these four supplements, on just a 1000 mcg dose of methyl-B12, I experienced a complete change in my neuralogic state. This included a huge reduction in a 40 year-long anxiety problem. I am still smiling about that, and that was just the beginning. After selecting this combination, based on a study of the B12-methylation cycle, I learned that several doctors are using B6 and Magnesium, and others are using methyl B12 to treat children with Autism or Asperger's, with great success. So the fact that this is helping with CFS is at least consistent with some clinical experience in related areas.

Continuing the story... Once these supplements were working, after a few weeks, I started noticing that my endurance improved and my immune function seemed better. My continual viral immune response seemed to normalize, and digestion improved. Also, my color returned to normal (skin no longer yellow, teeth now whiter, tongue now red not white, and the rings under the eyes lightened)! But ironically, with these gains I also started getting more recognizable symptoms of B12 deficiency, which I now believe had been present all along but was partly covered by the neuropathy involved in B12 deficiency. Think about that, B12 deficiency produces neuropathy (this is a known fact) which hides the symptoms of B12 deficiency! No wonder this problem can drag on so long without being identified. As the full realization that B12 deficiency was now evident for my CFS, I decided to add supplements to more fully support the methylation cycle and help make up for other deficiencies long-term B12 depletion has probably caused. So that led to Stage 2 of this protocol, the addition of vitamins, including more B vitamins, minerals, and a natural green concentrate.

The Multi-B12 Protocol - Stage 2
After about a month, I started adding a few other supplements that are recommended for sustaining the methylation cycle. Many of these supplements are additional B vitamins and some are antioxidants. Some promote nerve health and some (such as the folate) are recommended by other people using various B-vitamin protocols. These seem very important and I tolerate higher doses of B12 while using these.

Here are the sustaining supplements. I arrange these in alphabetical order to help remember to take them all in the mornings. I have included the brand name only where I believe brand makes a difference. If I do not give the dose, I am just taking the recommended daily dosage, or sometimes half of that. These do not all seem equal in importance, I can skip some of them some days without too much effect. But the three in bold are more important.

1. Vitamin A (from fish oil). A natural antioxidant. Alternate days with Vitamin D (due to possible interactions)
2.1. Active Vitamin B12 (adenosylcobalamin), called Dibencozide, by Country Life. This is essential to increase energy. This could be in the core supplements, but, I suspect only people with CFS need this while those with Lyme or other related problems without the CFS may not. I take 150 mcg daily (a half tablet). This is another active form of B12, used by the mitochondria in energy production.
2.2. Vitamin B complex (naturally balanced). I use a Jarrow product for that, 'B-Right', but probably others would work. Be careful NOT to use a standard B-50 or B-100, those formulas are not balanced and do not seem to have as much positive effect.
3. Vitamin D. I use a D3 product. Also I alternate this with Vitamin A, do not take them the same day (there are some possible interactions)
4. Vitamin E. I use a Gamma E complex, but probably any good E will work.
5. Methylfolate (activated Vitamin B9). Solgar Metafolin ONLY. This is another essential supplement, but it is so strong that I did not include it in the core supplements, because I believe it could give such a strong reaction that people might get discouraged about the protocol. This brand is an activated form of methylfolate patented by Merck. I take 200 mcg per day, some people take up to 800 mcg. But tolerance varies, this amplifies the effect of Methyl B12, so be careful to ramp-up slowly.
6. Green nutrients supplement. I have a variety, and probably juicing vegetables would be best. I believe this is an essential part of the protocol, supplying a broad spectrum of natural nutrients while the body repairs and restarts dormant processes. My current favorite green concentrate is 'Perfect Food' by Garden of Life. This makes a huge difference, if I forget to take this, I can tell within a few hours, so I believe there are many critical nutrients for CFS in this supplement.
7. Calcium. I have tried herbal calcium and also sometimes Calcium Citrate.
8. Omega oils. I take a 3-6-9 product made from Salmon oil.
9. Potassium. I take about 1/4 tsp of potassium chloride, although tablets and capsules are available. This may be critical for some people, due to mineral problems involved in health problems related to B12 depletion. Some days I take an electrolyte solution that has potassium and count that as the daily potassium (I take '40,000 Volts' by Trace Minerals Research).
10. Trace minerals. I use a product called 'Concentrace' but probably any good quality trace mineral product will work.
11. Zinc. I take one 50mg tablet ONE time per week.
12. Choline. I take one gelcap daily of Phosphatidyl Choline. This is a key ingredient in the cellular methylation that protects the DNA from damage.

The Multi-B12 Protocol - Stage 3
Once the two forms of B12 and the supplements in stages 1 & 2 were helping, I added a third form, the natural form, Hydroxocobalamin. The reason to add this is that H-B12 is known to help with brain function and one lingering symptom on this protocol has been mild brain-fog. In fact it seems that at times the methyl-B12 adds a detox burden, but H-B12 seems to often lift that. This is listed as a stage 3 because I suspect some people might not need this, but for those with lingering brain fog after stages 1 & 2, I believe it might be important.

1. Natural B12 (Hydroxycobalamin). There are only two brands I have found, one by Perque, and the other by ProHealth. We are using the ProHealth brand as it is slightly less expensive (H-B12 is the most expensive of the B12s). As of this posting I am just using 1250mcg of H-B12 daily (one quarter of a 5000mcg tablet), but it is definitely helping.

There is still the cyanocobalamin form of B12 which we have taken in the past, but are not regularly using. This is also a natural form, produced in the liver, but supplementing this produces a cyanide residue that I don't want to deal with right now. However, some people with CFS have used C-B12, and at some point I may try this again.

The Multi-B12 Protocol - Extra Support Supplements
And finally, here are a group of useful extra supplements. These are the only other supplements we are using. These are taken as needed.

1. Blue-green algae. I use the Klamath Lake product, primarily to help with sleep. If I wake up too early, one capsule helps me get back to sleep. My daughter uses this as well, for sleep help. This is often recommended for detox and also for ADD, it is very helpful during B12 therapy.
2. Oregano oil. This is an amazing product for addressing any viral or bacterial infection. We use this regularly and it seems to often stop a virus. Liquid and gel cap, both work well.
3. Olive Leaf Extract. This also is a powerful natural antiviral. I take this every night to help with sleep, and also take extra when I have any viral problems. Liquid or capsule form seem equally effective.
4. Chlorella. This seems helpful when there are strong detox reactions. But I can not take it past about 5PM or it can interfere with sleep.
5. Guaifenesin. This really helps my daughter with her Fibromyalgia, and seems more effective with the B12 protocol. We are exploring this further as Guai has allowed her to sleep better than she has in years. I tried a full Guai protocol for CFS some years ago with little success, but combined with the B12 protocol this might be worth exploring again.

Where to Buy the Supplements
As for the supplements, I now buy these supplements online from iHerb.com, as do many people on related B-vitamin protocols for CFS. They have the best prices I have found, shipping cost is low, and they ship quickly. iHerb.com also offers a 'referral fee' so every customer is an 'affiliate.' I know, that can be annoying but that is just how they operate. There is no membership fee, if you buy anything they will give you a code you can use to give other people a $5 discount on their first order and receive a tiny referral fee from each subsequent order. My code is MOP379. If you use that you will get a one-time $5 discount. I think their referral discount system is clever, but of course the goal is to find reasonable prices. So far they have the best prices for these supplements that I have found.

Next Steps
Now that this 'Multi-B12' protocol is finally working, I have started to explore some 'next steps' to build on this success. Clearly this type of B12 protocol can only take a person so far. I believe that once the methylation system is working a bit better and B12 levels are normalized, a foundation is set down for further treatment options. Some ideas I am exploring right now are anti-candida protocols, which might finally become tolerable, stronger anti-microbials for Lyme and protozoa co-infections, and a revisiting of some past therapies I have tried that seemed promising. One of the big surprises with this multi-B12 protocol is the enhanced sense of well-being. That may set a foundation for the use of various emotional/spiritual and cognitive healing methods that have seemed promising in the past but now with the B12 may have better ability to help reprogram the brain and the mind/body connection towards healing and recovery.

Final Thoughts
When I first studied B12 protocols, I found the many competing recommendations and the complicated science to be quite discouraging. But actually getting a protocol that works was not as difficult as expected. The only parts that I have had to adjust were the doses of methyl B12 and methylfolate (B9). And sometimes I have to take a second Ester-C. Also, while I am exploring different doses of B6 now that is not due to tolerance issues, but just to find the most affordable dose that works. But on the whole, this is a pretty simple protocol that requires minimal adjustments. I am very curious to find out whether this will work for other CFS patients, or those with related conditions, including basic anxiety, Lyme, and issues related to Asperger's.

I am happy to answer any questions about this, I know probably I have not explained things very thoroughly. Eventually I hope to have time to go into more detail, but right now I 'have a life' starting up again, so not much time.

Read more!

Tuesday, June 09, 2009

MMS for CFS

MMS, or 'Miracle Mineral Supplement' is a water purifier being used to self-treat a variety of infections and chronic health problems. There is plenty of discussion now on the web about the use of MMS and based on many reports MMS can be helpful for Lyme and also for CFS. However, after some experimentation with MMS I have learned that the standard MMS protocol does not work well, what helps me is to use a very low dose pulsing strategy. Here is what I have learned.



MMS appears to be a very powerful self-treatment for infections of all type, the active ingredient is Clorine Dioxide, a powerful anti-microbial. This is a report of my experience with MMS, and not a description of the chemistry or story of MMS. If you do not know much about MMS, I suggest you go to Jim Humble's website and get his free eBook (Part I), or go to other MMS sites, particularly the documentary video site. There are also several videos on YouTube about MMS.

Initially, I followed the protocol suggested in Jim Humble's eBook, and worked up my dose by adding a drop or two each day. When I got to about 9 drops I started noticing some pretty strong symptoms. Then I had a problem measuring a dose, and added a few extra drops, I believe I had about 12 drops that day. The resulting Herx 'knocked my socks off.'

Apparently, taken in the larger doses suggested for malaria and other serious conditions MMS can make people with CFS quite ill. Presumably this is from the huge die-off, or Herxheimer effect, my symptoms from the larger doses were consistent with what I have experienced many times as die-off or Herx.

The improvement in my overall symptoms was quite noticeable, in particular I usually experience a boost in my energy levels, and that lasts through much of the day. In particular, I can tolerate more activity, even some low-level physical activity with less post-exertion malaise. This is perhaps a 15% improvement in energy and activity levels for me, and that has persisted now for about a year. I still have had some low periods and sick days, but overall, MMS has been a consistently positive experience. A few hours after my morning dose, I feel really good, like a neurological release of endorphins of some sort. I have no idea what that is, but it has happened many times several hours after a dose. This is similar to what I have read about with Rife and Magnetic Pulser self-treatments with some people with Lyme. So maybe the MMS was acting strongly against the Lyme. Hard to say.

Anyway, here is where I have ended up. The larger doses just are way too much. The detox from the herx becomes unbearable after a few days at 5-6 drops. And I have noticed that when I take regular days off MMS, lower doses produce a productive herx and give me just as much energy boost and 'good feeling' as daily higher doses, but without as much herx detox problems.

So, right now I am just taking 1-3 drops of MMS about 4-5 times per week. On the off days I must take Vitamin C in the mornings, that seems to help the adrenals become less depleted during the day. This seems particularly important as Vitamin C can not be taken close to an MMS dose.

Here is an example week:

Sunday - 1 drop MMS
Monday - 2 drops MMS
Tuesday - off day, take Vitamin C and mineral supplements
Wednesday - 2 drops MMS
Thursday - 3 drops MMS
Friday - off day, Vitamin C and mineral supplements
Saturday - off day OR 1 drop MMS

Every Day - probiotics or active yoghurt (8-12 hours after MMS, so in the evening usually)

Every Day - self-talk and occasionally other herx-management self-treatments (
see my previous blog posts)

This protocol can and does at times produce mild herx-type symptoms, so a person using MMS for CFS/Lyme should be prepared for that. I continue using many of the same herx self-treatments I have used for years, and written about previously. This includes self-talk, which I find helpful when the herx gets bad sometimes. The herx from this CFS MMS protocol seems delayed, sometimes it hits 8 hours after the dose, and sometimes it hits 24-36 hours later. I have not found any particular pattern to that, except that with the lower dosing the herx is more tolerable if and when it does hit.

One more important observation, when I was first experimenting with MMS I was not taking any days off, and I started having non-herx symptoms that I recognize from past experimental treatments I have tried as mineral depletion and possibly depletion of other resources. So I make sure to take days off every week and supplement with extra minerals at times, and that seems to allow me to tolerate more long-term use of MMS. I have read of people taking the higher doses suggested for serious illnesses for months and even years without breaks, they obviously do not have CFS. So I believe people with CFS need to be very careful with MMS, taking lower doses and pulsing.

One other comment, I was studying the Marshal Protocol (Benicar & pulsed low-dose Minocycline against biofilm bacteria colonies) at the time I was first experimenting with MMS, and I learned that a few people have completely recovered from CFS using the MP (this is a subset, many have not had that improvement). So the MP influenced me to try a low-dose pulsing approach. Here is the reason. MMS produces
Chlorine Dioxide (ClO2), which is the 'active' antimicrobial in the treatment. While studying the industrial uses of ClO2 I learned that ClO2 is used in industrial applications to destroy biofilm bacterial colonies! Well, as the MP is targeting biofilm bacteria infection, this interesting fact made me curious about using an MP style protocol of MMS for CFS. The hope was that low-dose pulsed MMS, which seemed to work for me, might be breaking down some of the biofilm bacterial colonies being targeted by the MP.

I have been using MMS on and off for about a year now. The use of regular probiotics, occasional vitamin C and minerals, and self-management of the low-level herx that results all seem very helpful. There have been no negative effects that I can discern, but I am not sure that the improvements are as dramatic overall as some other people claim for their illnesses. Some people are saying that you must take MMS morning and evening for CFS, I have tried that a little, and experimented with evening dosing for awhile. There was some sleep improvement after taking MMS at night. However, I could still only tolerate a cumulative dose of 1-3 drops 3-5 times per week. So I could not take doses morning and night and decided that the increased energy during the day was important and I have stayed with morning doses. I may be a highly sensitive person because I have read that other people using MMS for CFS are taking a dose morning and night.

After a year now I will continue to take MMS in the morning, roughly following the protocol outlined above. One last observation, on the off days I mostly just rested at first, but I am now noticing an occasional immune activation that differs from a regular herx on the days off MMS. So perhaps the MMS is helping the immune system become activated now in some important new way. Time will tell.

Overall, I am very impressed with MMS. Based on my experience MMS does help CFS and possibly Lyme. However, for people with poor detox, like most of us with CFS and many with Lyme, smaller dosing and a more conservative schedule than what is recommended by Jim Humble and others promoting MMS seems to be important.

Read more!

Monday, November 24, 2008

A Novel Therapy - Self-talk for CFS-Lyme

Over the past few years there has been some interest among members of the CFS community in a number of cognitive therapies for CFS that claim to produce dramatic improvements by resolving a chronic fight-flight response in people with CFS. I have studied two of these therapies, and concluded that there is some validity in their approaches. Not wanting or being able to afford these therapies, I have invented a simplified 'self-talk' therapy that I believe addresses the same core issues as the other cognitive therapies. And it seems to make a significant difference for me. Not a cure, but very, very helpful, my activity level is better than before, and some of my food allergies are reduced. So something has been helped. Here is some background, and an explanation of using self-talk for CFS and/or Chronic Lyme.


There are several cognitive programs that have helped people with CFS, such as Reverse Therapy and Mikel Therapy. But two are focused on stopping the chronic low-level fight-flight response that seems to be part of CFS, and this is consistent with my own discoveries so I will mention them. In particular, the Lightning Process by Phil Parker, and an Amygdala Retraining program by Ashok Gupta, both in the UK, have produced some amazing results, per testimonials. Gupta has also produced a peer-reviewed journal article (published in Medical Hypothesis) and a formal clinical study (currently in review) that shows an amazing 67% full recovery rate over a year's time. Both programs identify a brain dysfunction as the core issue in CFS, in particular a dysfunction involving the amygdala and hypothalamus. They claim this dysfunction can be accommodated and new brain pathways can be created that circumvent the amygdala-adrenal 'looping' problem that may be causing CFS in a major subset of people with the illness.

After following several online discussions, and corresponding with people who have tried both programs, I became convinced that these types of cognitive approaches were being oversold but lead to improvements for many people with CFS, and near remission for a few. Therefore, this seemed worth further exploration. So over the past year I have learned what I could and tried some of the ideas from both programs. I definitely experienced some improvement, and at times dramatic temporary improvements from trying what I knew of both programs. My daughter who has CFS also experimented with the ideas from these programs, and they helped her to some extent as well.

So, could CFS be caused by a type of looping error in the brain? Many of the ideas in these two programs are consistent with my own theory of neurotoxins creating an anxiety-type disorder in the brain, leading to CFS and Lyme symptoms. So I searched for a way to address a 'looping' problem that I believe is caused by neurotoxins, but I did not want to spend the money, or travel to London, to use these treatments. What I have discovered is a very simple method of stopping the adrenal-amygdala looping using 'self-talk.' While this does not seem to produce an effect as powerful as the claims made by Parker and Gupta, and has not been a 'cure' for my CFS or Lyme, it really has significantly helped me. I have shared this with 15 other people with CFS and/or Lyme, and some have been helped, so I would like to share a little of what I am learning. I am also writing an ebook describing the use of self-talk to stop destructive adrenal-amygdala looping and hope to post that to my blog eventually. But for now, here is a brief summary of using self-talk for CFS and Lyme ...

The theory behind the use of self-talk for CFS is that neurotoxins are affecting the parts of the brain that regulate the fight-flight response. This is where I differ from Parker and Gupta, they both identify the pathological brain looping as a learned pattern. While they acknowledge the effect of illness on the problem, they seem to believe that it is the stress of illness or other stress-related factors that produce the brain looping. My view, based on studying CFS and Lyme, is that the illness produces neurotoxins that then combine with a susceptible brain type and create brain looping.

I believe Parker and Gupta have produced useful treatments that can re-train the brain's chronic fight-flight response, but they apparently have not identified the role of neurotoxins in the original looping problem. The self-talk process I am using now shares some elements of the Parker and Gupta approaches, but addresses the role of the neurotoxins more directly.

First some quick background. As I have identified earlier in this blog, CFS and Lyme share many symptoms and biological patterns with Anxiety disorders, particularly the fight-flight response. Chronic anxiety disorders also produce nearly the same biological signature in a person as CFS. This includes glutathione depletion, depletion of B vitamins, digestive problems, low blood flow to the brain, kidneys and other organs, brain fog, adrenal depletion, chronic exhaustion, and so on. I do not believe this is a coincidence, rather it suggests that these illnesses all involve a common mechanism, a chronic activation of the fight-flight response.

The idea that CFS involves chronic fight-flight activation is the basis of the adrenal-amygdala looping problem addressed by Parker and Gupta in their respective therapies. If we add the idea that neurotoxins are the basis of the chronic fight-flight activation, we have a more probable explanation of why the Parker and Gupta approaches work than they have provided. I can not really explain this thoroughly in a blog post, but will put that in my ebook. In essence, neurotoxins are toxins that alter nerve function. When they are present, the nerves will mis-fire, and if this is a chronic situation, there will be chronic problems. If neurotoxins are causing a chronic up-regulation of the amygdala, a continual low-level fight-flight response could result. This might be at least partly treated by learning cognitive processes that calm the amygdala continually. That is in fact what I believe happens with the Parker and Gupta approaches, that they are unknowingly addressing a neurotoxin problem.

So why use self-talk instead of their approaches? I believe that the simplest solution is often the best one. If CFS (and Chronic Lyme) involves a chronic activation of the amygdala by neurotoxins, and if this can be at least partly treated by re-training the brain's response to the neurotoxin, then a simple treatment that directly targets the problem may be adequate. I won't go into details of Parker's or Gupta's approaches, they are probably quite effective at the retraining of the amygdala, but they are not directly targeted at continual neurotoxin activation of the fight-flight response. If we need to treat the brain's response to chronic low-level neurotoxins, then I think it best to address that issue directly. Self-talk is an elegant and very simple approach to doing that.

And what is self-talk? How does this work? Self-talk is a form of intrapersonal communication, meaning a person is both the sender and receiver of a message. In essence, a person tries to alter or create new subconscious memory. Self-hypnosis, NLP and meditation are common methods of intra-personal communication. Self-talk is a simplified form of intrapersonal communication using a repeated conscious message. By thinking a repeated message in words a person is able to focus the brain on a specific meaning. Elements of the subconscous mind are always alert, so as that message plays across the conscious mind the subconscious elements of the brain become aware of the intended meaning. With repetition the subconscious memory accepts the message as real and important, and adjusts its responses accordingly.

The subconscious mind does not have the ability to reason or directly process conscious information, it uses a slower form of memory that recognizes subtle patterns in the environment, the internal body chemistry, or our thoughts, and triggers a semi-automatic response. Thus the primary challenge in altering subconscious responses is to create new subconscious memories. Repeating a self-talk message consistently either when symptoms appear or at certain times of the day will lead to gradual alteration in the subconscious memory. Then as the amygdala accesses the subconscious memory to recognize patterns, new patterns will be available and amygdala responses can be changed. Self-talk can be a very effective method for creating these new subconscious memory patterns, and thus altering amygdala responses. This apparently includes altering the amygdala's response to neurotoxins.

For self-talk messages to help treat CFS or Lyme symptoms, they must change the subconscious response to neurotoxins. This subconscious response is based on the brain's conscious response to neurotoxins over a long period of time. Given enough time, neurotoxins will have caused the amygdala to create a large number of danger messages in the brain. These danger messages will have become attached to many aspects of life, daily routines, career, relationships, and even hopes and dreams. Therefore to counter this continual pattern of danger messages, a person must insert new messages into the amygdala, messages that will directly oppose the many existing danger messages caused by the presence of neurotoxins. The new messages must cause the amygdala to believe that something has changed, that the person is no longer in danger, that they are safe. This shift must be strong and constant, so a person must persist with the new messages long enough to re-condition the amygdala to continually believe that even in the presence of neurotoxins, it is safe in every way.

The only type of thoughts that will directly counter a neurotoxin-based danger message in the amygdala are clear opposing thoughts. To be precise, only a strong message that communicates the specific thought 'I am safe' or 'I am alright' can defeat the danger message. This simple message of safety must be adapted to daily triggering circumstances and adapted to one's symptoms, then repeated many times each time a circumstance or symptom occurs. An entire self-talk approach can be constructed to help a person compensate for the effect of neurotoxins on the amygdala across all elements of daily living and in all thought processes. This personalized self-talk approach must be repeated often enough that the subconscious mind believes that the person is in fact safe, and that even if neurotoxins are present, they pose no real danger.

These are simple ideas, the amygdala is a simple organ, when the subconscious mind sees a pattern that matches a danger signal, it reacts by triggering the amygdala. So the subconscious mind must see patterns of safety to stop the amygdala from reacting, and that is what self-talk can provide, a compensation for neurotoxin-induced messages that provoke the amygdala.

I have developed a somewhat formal approach for identifying the most appropriate self-talk messages for CFS and Chronic Lyme. The messages must be tailored to the individual, each brain creates a different set of danger messages, and they must be identified and properly countered. In many cases I believe the brain actually is in a chronic superstitious (or self-delusional) state due to the presence of the neurotoxins. So you must find ways to ground yourself and break through the false danger signal patterns that have been constructed by the brain over the years, in order to stop the perpetual fight-flight reaction. This is not a simple task, but when it works, it really helps.

More to come, hopefully I will have the ebook written soon.



Read more!

Friday, June 08, 2007

Neuroendocrine list discusses Lightning Process

Due to the interesting and positive results people are having with some neurocognitive therapies for CFS, particularly the Lightning Process, I have started moderating a Yahoo list that discusses this type of therapy. The list also discusses endocrinological aspects of CFS, which seem closely related to the fight-flight hypothesis I wrote about in 2005. The list is available at: http://health.groups.yahoo.com/group/CFSFMNeuroendocrine/
Here is a brief description of the topics discussed on this list.


From the Yahoo group CFSFMNeuroendocrine: "Chronic Fatigue Syndrome, Fibromyalgia and related conditions involve disturbances in the primary regulatory mechanisms of the body. This usually includes hypothalamic dysfunction, thyroid problems, adrenal exhaustion and immune imbalances. Detoxification errors are also common, along with chronic infections, all contributing to an overload on endocrine and immune system resources."

"The purpose of this group is to help members better understand the neuroendocrine involvement in their conditions. The group is an open forum for topics related to neurological, endocrine, immune, detox and similar elements of CFS and FMS type conditions. For example, informational or treatment topics related to the brain, adrenals, thyroid, pituitary, sympathetic or parasympathetic nervous system, immune response, energy regulation, circadian rhythms, related emotional and cognitive processes, etc. This includes discussion of how suspected pathologies, environmental toxins, electromagnetic disturbances, and other relevant biological or behavioral problems influence the bodies of people with CFS, FMS, MCS and related illnesses."

The Links section of the list contains useful information for those studying the Lightning Process, along with Neuroendocrine views of CFS.

Read more!

Saturday, February 17, 2007

Cautions about Salt/C

A number of reports of serious negative reactions to trials of salt/c have been appeared recently, prompting me to carefully re-evaluate safety issues related to the protocol. Although I had some worrysome symptoms myself initially on salt/c, including some heart palpitations, chest pain, occasional upper left arm pain and kidney area pain, most of that went away when I lowered my dose, or when I took supplements to support each of those systems. I had attributed those events to the herx response so often mentioned in the salt/c forums and although I was worried about the symptoms from time to time, the benefits from salt/c were often substantial and I believed the idea that these were normal herx symptoms. However, after receiving several reports of serious reactions to salt/c, I decided to do some homework. And what I found has changed my views of salt/c significantly.


The views of salt/c safety were initially based in the idea that historically our ancesters consumed a LOT of salt. In retrospect, that was not a very scientific basis for the safety of salt/c. After some research into safety issues, I have compiled the following list of cautions regarding salt/c safety, particularly for people who may unknowingly have salt intolerance, or related problems. This may be a small percentage of people trying salt/c, but they should not be ignored. Everyone needs to know because there is no way to guess who will be at risk. This should be clear as you read through the list. I believe these points are ESSENTIAL to share with anyone considering a trial of salt/c. Please note that these are based on my own study of the research, and should only be considered as potential issues, and certainly not the final word. Hopefully serious researchers in the biological sciences will eventually weigh in on the safety of salt/c.

1. Salt intolerance symptoms are different from herx symptoms. A herx from killing the Lyme bacteria is well-documented and can involve low-grade fever, slight increase in general symptoms, some immune activation (cold symptoms), things like that. In contrast to this, based on reports, a salt intolerance event can involve kidney area pain, severe thirst, edema, extreme mood swings (possibly due to electrolyte imbalances), heart or chest area pains, palpitations, left arm pains, severe shortness of breath, visual disturbances, motor problems, etc.

2. If you have symptoms of salt intolerance you should stop salt/c IMMEDIATELY and begin drinking extra water to help flush out the excess sodium. Just ramping down may not be adequate.

3. Salt intolerance is a type of poisoning. What may be happening is that the aldosterone levels are unable to suppress to allow the body to remove excess sodium. This means the sodium levels are building up to a high level. So even a low dose of salt may be having the same effect on a salt intolerant person as if they had taken a very, very high dose of salt.

4. When a body can not regulate sodium levels well, chronic intake of salt may create hypertension. This is known to damage the kidneys over time. Therefore, a salt intolerant person who persists with salt/c may be putting their kidneys at risk of injury.

5. Human tolerance for salt varies tremendously, by as much as 300%. Therefore some people may benefit from doses of salt that may be dangerous for other people. We are not at all uniform in our ability to eat salt. So if you have symptoms of salt intolerance, take them seriously.

6. People who have pre-existing risk factors, such as kidney problems or potassium deficiencies, may be much more at risk of intolerance of salt/c, and this is probably amplified if they also have a genetic ACE mutation. Even if a Lyme sufferer's kidneys are relatively strong, they might still be unable to tolerate salt/c, due to an overload of toxins from Lyme or other co-infections, mineral balance problems leading to low potassium (which is certainly possible with some mineral-depleting co-infections), or endocrine regulation problems in the adrenals. Also, kidneys do not produce symptoms until they have lost 70-80% of their function, so some people with kidney problems may not even know they have that risk factor. And they may have no awareness of low potassium levels. Therefore, nobody can ignore the possibility that they may have unknown risk factors that contraindicate salt/c. So everyone trying salt/c should become aware of the difference between salt intolerance and herx, and monitor their response accordingly.

7. The lowest research-based level at which salt becomes toxic and can cause symptoms and some damage is generally given as 0.5g/kg (see the first reference below for this). The lowest number where salt becomes a lethal poison is 1.0g/kg, just double the toxic dose. [reference: http://ToxNet.nlm.nih.gov ] Therefore, for a healthy 60 kilo person (132 lbs), this means the toxic dose starts at 30g. That would presumably be a single 30g dose. The Salt Institute says that a teaspoon of salt weighs 6 g. Therefore, 5 teaspoons of salt taken over a short period of time would be considered a toxic dose. Since nobody is recommending salt/c be taken in doses that large, we would seem to be safe. However, remembering the huge variation in salt tolerance, consider the extreme scenario where a person is salt sensitive (has the ACE mutation), and also has low potassium or a diminished kidney function (for whatever reason, including overload). Their toxic dose may be much lower, perhaps only 1-2 teaspoons could
have the same effect on them as a 5 teaspoon dose on a health person. Some people on salt/c have reported taking 1 teaspoon doses at a single time. This could be a toxic dose level for some people. Although this would not be a lethal dose, their kidneys might be damaged from a dose this low (see references below for information about ways the kidneys are damaged from excessive salt). Also, remember that a lethal dose starts at double the toxic dose. These people might tolerate a low dose of salt/c, but should probably NOT be on a therapeutic dose of salt/c.

8. The research literature about health effects of salt includes cases where salt became poisonous because the person was under-hydrated. If a person is not drinking adequate fluids, a dose of salt/c may have an amplified effect. This is another route to creating a toxic response to salt/c. Therefore, if a person is not willing or able to monitor their fluid intake, they should not be on salt/c.

9. Large doses of salt increase the excretion of metals. In fact, large doses of salt are recommended for lithium intoxication, to get the lithium out of patients who have had drug overdoses. If a person has poorly functioning detoxification, such as bad methylation and low glutathione, and also has a toxic metals load, this could cause problems and compound the herx effects. Also, some metals could be redistributed if the detoxification system can not handle the load of metals releaased by salt/c. On the other hand, if a person has good metals detox and clearance, salt/c might actually be beneficial for reducing metals load. But there are many genetic variations in detoxification potential so this is VERY unpredictable on a case-by-case level. Genetic testing is available to assess methylation status (see the links on the Yahoo list 'CFS_Yasko').

10. Due to the risks mentioned above, prudence indicates that people on salt/c should be following a slow ramp-up protocol precisely, and then tracking and monitoring their symptoms. They should be writing doses, and symptoms down in a log, in order to provide objective data to help them determine the type of reaction they are having. Given the hopefulness many people have towards salt/c, there may be some tendency to forget how 'bad' a person felt, so brutal honesty is required in this type of logging of the experience of the protocol.

11. If a person tends to have problems following protocols and is unable or unwilling to precisely follow the ramp-up, and track the results carefully, they should not be on salt/c. In particular this applies if they are taking the granulated salt in water and sipping it throughout the day. That can cause some people to take larger doses at one time than they realize. A better strategy is to make each dose separately, so there is no risk of overdosing when sipping throughout the day.

12. IF a person has ANY reason to suspect that they have heart or kidney weaknesses, or that they may have the ACE mutation (most people with CFS may have this), or if they know that they have any other the risk factors, they should not be on salt/c without careful monitoring of their progress, and if possible medical supervision. In fact, if any very unusual symptoms emerge that are not part of an ordinary herx (mild increase in symptoms), they should probably re-consider using salt/c until they better understand their own risk factors. Treating new symptoms that they have never experienced before with supplements may be hiding an underlying salt intolerance.

13. A number of studies have correlated high salt intake with a variety of cancers, most often stomach cancer. Although there may be other factors in the diet of the people in those studies (I believe the main studies are Japanese), this should give everyone a small pause about salt/c. If a person knows that they are in a high risk category for cancer, such as having stomach cancer in their immediate family, they should consider carefully whether salt/c is for them.

14. A 'cowboy up' or 'tough it out' philosophy of ignoring strong herx symptoms and just pushing oneself through seen in some online discussions could be extremely dangerous for people who happen to be salt intolerant. This notion should be banned from any online discussion of salt/c since salt intolerant people could be harmed as a result. The fact that simply enduring and ignoring strong herx symptoms works for some people does not mean it is safe for all. Cowboy up is like playing Russian Roulette, gambling that you are not the person with the bad salt genes, overloaded kidneys, etc.

15. People with CFS often have diminished bloodflow in the kidneys, one study shows that bloodflow is about 50% of normal, for most people with CFS. Therefore, a person with Lyme who also has CFS may be at higher risk for any treatment that produces strain on the kidneys. In my own case even after nearly two years of salt/c, I only tolerated a half dose strategy, meaning I only was able to tolerate half of the suggested salt/c doses. In retrospect, that may have been due to this kidney bloodflow issue with CFS. Therefore a person with CFS who decides to take a chance on salt/c should probably set a lower target dose, half dose seems to work for some with CFS.



Read more!

Friday, December 29, 2006

Pulsing Salt/C - it's working

[IMPORTANT - I am leaving this blog post up as a historical insight into my efforts with salt/c, but I have reversed many of my views on salt/c since this post. The improvements I mention below did not last and I eventually had to stop salt/c entirely. I now believe it is critical that a person experimenting with salt/c be careful and be familiar with the risks of the protocol. For some people salt/c may have serious risks. Please see my post 'Cautions about Salt/C, also the 'Warning Label' section in my 'Executive Summary of Salt/C']

I am much improved, to the point where I am trying to work again. Still not back to my old self, that will take some time, but at least not bedridden and housebound all the time now. So time to share what is making the difference. I have made a few important changes, including pulsing salt/c and adding some important adjuncts.

First the EMF blocking. The EMF hat still helps, and does give good results, but I do not seem to need it as often. I wear it when I feel lousy. I have a daughter (early teenager) who has some CFS/Lyme type symptoms and she steals my hat when she has headaches, and that stops them often. I don’t use the shirt much anymore, but for a time it was helpful. I believe the EMF blocking did help something heal, it provided a step up the ladder, so to speak.

Now the pulsing. I went off salt/c for about 3 months, and was fine at first, but then started to decline again. So now I am back on a full dose, for the past few months, and that is better than ever. Partly I tried this because of Klinghardt’s views on salt/c, and it did help. I am also about to start Modifilan (for the second time), to help remove metals. I like Klinghardt’s general methods, but use alternative supplements to achieve the same goals, like the Modifilan, for example.

I was on antibiotics for a year, about six years ago. Antibiotics don’t fix chronic Lyme in people like me for some reason. I don’t trust them much, they gave me candida problems which I still battle. I am about to try SF722 to battle the candida.

In addition to salt/c, this time I added a high-quality colloid silver (MesoSilver) and colloid gold (MesoGold). Also I am taking Juice Plus. The combination is VERY powerful, equivalent to taking antibiotics, maybe better, because it does not seem to destroy the friendly flora.

So I am narrowing down a bit to a small protocol that seems to have a lot of power.


Read more!

Tuesday, March 14, 2006

My EMF-Blocking Experiment

After a recent post on a CFS experimental discussion group I decided to try an experiment to determine whether I am sensitive to EMF (electro-magnetic field), and particularly to the microwave radiation from cell towers (cell towers are open-air microwave emitters). The person who posted, Paul Doyon, an American English professor at a Japanese University claimed that leaving cell phone tower range caused his CFS to go into complete remission. He additionally claimed to have studied the EMF issue and determined that CFS was largely influence or even caused by EMF pollution. I decided to test his claims so I purchased an EMF-blocking hat and have been wearing it during most of the day for the past month. The results have been shocking.

What is most shocking to me is that nearly ALL of my symptoms are slightly improved when I wear the hat. So what is this all about? After studying the issue a bit, I am now starting to suspect that ambient EMF may be provoking CFS symptoms, and that people with CFS who have a high biotoxin load (including heavy metals) are somehow more susceptible to EMF. Since we know that people with CFS are often pathological detoxifiers, they will tend to have a higher toxin load. What if the ambient RFR and EMF pollution in our modern world is more hazardous to people like us?

First, some basic science and information about EMF. The following video presents some compelling evidence. (I am NOT promoting the product described at the end of the video and do not know if their products work, but find the video to be a very useful introduction to the topic).

http://www.emf-health.com/

That video is fascinating. I love the animations of the EMF waves, and think people need to think about EMF that way, it is simply a form of light that penetrates everything non-metallic. Some people believe that the Pineal gland is sensitive to this type of EMF 'light.' I have wondered whether one connection to CFS is that we have an over-sensitive or toxic Pineal gland, thus the Pineal interprets some types of EMF as a threat. This could create a perpetual fight-flight response (I speculated about that fight-flight response in my ‘CFS Theory’ entry, but have not made the connection to EMF until recently). Certainly, many people with CFS are over-sensitive types, perhaps that extends to sensitivity to EMF.

There are also many studies showing a wide range of subtle biological effects from EMF exposure, including many Russian studies of a ‘Radio Wave Sickness’ with symptoms that parallel CFS. Here is a paper summarizing some of this research.

http://www.goodhealthinfo.net/radiation/radio_wave_packet.pdf

And, one other important effect of EMF is to de-polarize the blood. This is particularly a problem with the use of cell phones. Here are some photos showing how this blood clumping progresses after cell phone use.

http://www.buergerwelle.de/pdf/cluster.jpg

This photo is really amazing. The first photo is blood before making a 90 second cell phone. The next pictures are right after, 20 and 40 minutes later. The last two photos are from a person standing 1.7 meters away from a person making a 90 second cell phone call, with blood during and 20 minutes after the call. My German is a bit rusty but I was able to read through the text. The blood was drawn from an ear capillary, presumably to be near the cell phone exposure. What they said was that after the cell phone exposure the blood became depolarized and therefore the erythrocytes clumped together and had lower oxygenation capacity. Yes, this reversed after 40 minutes. But clearly the normal functioning of those cells was suspended for a time. And what if a person makes or is near a cell phone transmission every 40 minutes? Yikes!

Clearly every use of a cell phone inflicts a temporary electrical injury and lowers oxygen in the blood cells, particularly those in the brain. Well, what about the other electrical elements of the body? The nerves, for example? I think cell phones should carry a health warning on the side, much like a pack of cigarettes. But probably that will not happen for a long time, after more clear identification of their role in disease, lengthy public awareness campaigns, legal battles, involvement of the US Surgeon General (for the US), etc. Just for fun I searched the US Surgeon General’s website. There is not a single reference in any report to EMF (nor related keyword combinations), and the only reference to cell phones was a warning about them distracting drivers. So maybe we should not use cell phones except in emergencies. Also, if they are so dangerous when held up to our heads, what about the chronic low-level exposure from cell towers? I believe the EMF blocking hat is helping with this chronic exposureI purchased the hat from Less EMF.

http://www.lessemf.com/personal.html

There are other vendors online selling the same hat. The hat is rather ordinary-looking, and some people might not like the Kaki color. But it is helping. I felt an effect within 24 hours, mostly a relaxing type of effect in the middle of the head/brain. It continued for a few days before I noticed that I was sleeping better, had more energy and endurance, and my mood was hugely improved. That lasted for about two weeks, then I got a kind of ‘herx’ and immune activation. I also did not get many symptoms from a terrible viral illness that went through our area, I had several children home from school, one for over a week with a bad virus, high fever, etc. All I had was sniffles and some mild pains. My college-age daughter has CFS and is not wearing the hat, and she was very sick for several days with this virus. Ordinarily I would be in bed for a week with something like that.

After about two weeks I tried wearing the hat at night, it seemed to help sometimes, but hard to tell. I decided to only wear the hat when I am sitting or standing (vertical), just in case the sewn-in steel threads can reflect waves, becasue if they do, and you lay down, the hat might function as a parabolic mirror and reflect into the head from the bottom. Anyway, I now do not wear it at night, and that seems OK.

But the BIG surprise was after about three weeks, when I noticed (and my wife also noticed) that I am starting to gain weight again. I lost a lot of weight, to an unhealthy level with my CFS, and have really struggled to gain small amounts. So to gain weight just from EMF blocking is very significant. And this is not just fat, I am gaining muscle mass, and it has continued now for the past six weeks (At this writing).

I am starting to become sensitive of the effect of the hat, I notice ringing in the ears, more pressure in the head, and other symptoms increasing when I take the hat off. My brain just feels better with the hat, does not happen with other hats. I have been wearing the hat for about a month now, and it is still helping. I do sense some cycling, perhaps from immune system working again. I have ordered more EMF-blocking clothing (a shirt) and will report any additional effects from that.

So how could this be working? One idea is that certain types or frequencies from chronic exposure to certain low-level EMF (probably the two cell towers a half mile from my house) may suppress the Pineal and thus lower its production of MSH, melatonin and DMT, rendering us more vulnerable to neurotoxins of all sort. MSH is probably the primary culpret (Melanocyte-Stimulating Hormone). Based on Shoemaker, MSH is the master control hormone. When it is lowered, the entire HPA system will not work properly. MSH controls melatonin and endorphin production. It also regulates part of the immune system, the cytokine pathways including some WBC functions (our major immune response). And it regulates the pituitary, and the cytokine (immune) response in the skin, GI tract, nasal membranes and lungs. MSH controls other hormone systems as well. Incidentally, Shoemaker also says that the low MSH also could lead to a higher need for salt, due to regulation problems with a substance called ADH. So that may be one reason why the salt therapies are helpful.

In my own case I am finding that EMF avoidance/shielding is a very helpful combination. I actually went to the dentist after wearing the hat for a month and have started being able to walk farther than I have in a long time, maybe a few years. There has been less post-exertion malaise even when I can tell that I shift to aerobic metabolism. Also, I seem to be detoxifying more significantly, possibly even experiencing a 'herx' effect after about 5 weeks wearing the hat, that lasted for about a week. Maybe my MSH levels are improving from the EMF blocking, and maybe some part of the immune system is returning to normal function, or trying to come back on-line. That would be nice.

Since I originally wrote this post, I have continued to improve, gaining more weight and clear thinking. I have been wearing an EMF-blocking mesh over a T-shirt most days and at night for about a month. As of this writing, two months have passed since I started with the hat, and I have gained about 8-10 pounds, mostly muscle, and am more than an inch taller than when I started. Yes, that is not a typo. My eating habits have not changed and no other treatment has changed. I had scoliosis as a teenager, and I have been gaining muscle mass in my back, and I believe that is straightening out my back. There may be other factors as well, such as strengthening of connective tissue. There is much more going on here than I have seen with ANY treatment I have ever tried in my 10 years of full-blown CFS. EMF blocking has reversed my long-term muscle-wasting! I realize that this result may be caused by synergy with my other treatments, so I will list the major treatments I am continuing during this trial of EMF-blocking. I am using a low-dose of Salt/C daily (about 6-8g), take systemic enzymes (including Wobenzyme, Serrapeptase, Nattokinase), and a few amino, herbal and mineral supplements. Also, I use meditation and emotional processing methods regularly. But none of these, nor dozens of other treatments I have tried have produced this effect in the past. I believe the EMF blocking is responsible for my rapidly improving health.


OTHER LINKS: Here are some great links I have found on the topic of EMF and chronic health problems.

The Largest Biological Experiment Ever, by Arthur Firsterburg, MD - this is an eye-opening description of what EMF, particularly wireless digital, may be doing to our brains. If you read nothing else about EMF, read this!

The FDA finally wakes up, Just announced April 6, 2006. The FDA is investigating cell phone safety after significant reports of increased brain cancer risk! This amazing development will hopefully be the beginning of the end of the ignorance of EMF health risks, particularly digital signals from cell phones. The FDA is certainly sending the right signals. Hopefully they will call the FCC on the carpet for what they have allowed to happen to us. Time to sell those wireless telecom stocks...


Read more!