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!