Exercise as Detox

[mojoey]

First of all, Freddd, it's encouraging to hear you don't have to avoid the vast majority of those ex-triggers anymore. At what point (or dosage of methylation supps) did that shift? Was it an abrupt shift or a gradual one?

As for the "categorization" debate, I think you had a few things going in your favor despite not having the success on other forums. 1) Cort wrote an article that clearly support what you were doing and it's a sticky at the top of this thread, 2) Rich has been laying the groundwork for methylation for 4 years so what you're talking about w.r.t to your own recovery was hardly unfathomable both experientially and theoretically.

This is not the case with avoidance. As Lisa alluded to above, avoidance is treated with a stigma. I'm inclined to think that human nature has a lot to do with it: our evolutionary buzz words are "survival of fittest," "war", "attack", "dominate", "top of the food chain." Avoidance goes against all of these because it forces us to cede ground to whatever we are avoiding and admit that, as Klingardt describes it, we are leftovers of evolution, the ones that have struggled to adapt genetically to an increasingly toxic world.

Although you are at the point now that you no longer have to avoid, I understand that Lisa has been doing hardcore methylation supplementation (b12 shots, jarrows sublinguals, deplin, etc) at very very high doses that probably equal yours on average, yet after 2 years of this she is still in avoidance mode and clearly made ill by biotoxins. Perhaps you have some ideas on what she is missing. I don't think the paradoxical folate deficiency applies to her.

So just as you were given a little catalyst en route to receiving the type of traffic you clearly deserve with your story and groundwork, I believe the avoidance experts (namely Lisa whom has put in more work than anyone outside of Erik Johnson on this topic and has the temperament to deal with both side of the topic like no other) can benefit from the same. Because this forum is so "pre-set" (if it weren't I highly doubt XMRV would still be occupying such precious real estate) a little top-down adjustment is necessary at times.

 

[Freddd]

Hi Freddd,

My own focus on treating this illness is as broad and open-minded as I have possibly been able to be, and I've tried just about every different type of treatment available. (I will say that I have my doubts about Rituximab and am really glad I went a different route from that one though.)

I've been pursuing methylation for five years now, starting with Rich's protocol and now using something much closer to yours. It feels to me like it's been a really important component of my recovery. And like you, I feel like I'm getting closer and closer to getting the whole thing resolved, with more and more reactivities falling away over time.

Where avoidance belongs on this board, I don't know. In looking at the data from the CureTogether site (summarized below), it seems to me that the majority of the top-rated treatments involve avoiding one thing or another (mold/biotoxins, gluten, sugar, chemicals, EMF's, allergens, high stimulus environments, stress), and that perhaps having a separate section just for "Avoidance" on the board would be a good thing. I think at some level, people tend to think that having to avoid things is a sign of personal weakness, or is just something that they would prefer not to do. Giving it legitimacy as a true CFS treatment type might help people to see it in a different light and thus consider it more seriously. If you lived in a moldy house yourself, then I suspect that you agree that regardless of how helpful methylation support may be, those living in really bad places are not going to be in the position to take full advantage of it.

That's not why I haven't written much on this board recently though. I've been involved in a number of other projects designed to help to create awareness of CFS (amongst media, physicians and the general public), of toxic mold (amongst the same groups plus in schools), and of mold avoidance as a treatment for CFS. I do have a summary of my previous writings from PR for those interested in the topic though, and am happy to answer questions from those who want further information.

Thanks much for your work in this area. Like others, I have found it very interesting and helpful in my own recovery process.

Best, Lisa

*

Some new data on treatments.

Below (for understandability) I reorganized responses from the Cure Together site by the % showing improvement.

http://curetogether.com/chronic-fatigue-syndrome/treatments/

About 1600 people with CFS responded.

I was surprised that half said that mold avoidance was helpful, since for most people this just means moving. Biotoxin avoidance was higher (likely because only informed people know that word).

Ampligen and LDN (both immune modulators) scored 50%. It really does seem like those treatments _should_ work on this disease, and its frustrating that theyre not more consistent. My hypothesis is that its because people are getting so much inflammatory stress that it overwhelms the positive effects, and thus am excited to see this blog from an extreme avoider about to start Ampligen:

http://ampligen4me.wordpress.com/

Id like to see more reports on oxytocin, the top-rated hormone. T3 also rated highly.

Antidepressants, CBT and GET helped about 20%. Thus, my guess is that of people diagnosed with CFS, about 1/5 actually have plain depression.


From 9/4/2011
% Reporting Mild/Moderate Improvement

80%+
Low stim environment.

70%+
Frequent rest breaks. Oxytocin (10).

60%+
Rest. Personal development. Mindfulness.
T3. Avoid biotoxins. Wheelchair.

50%+
Ignore people who think ME/CFIDS is not real. Meditation. Change job.
LDN. Ampligen (6).
Stimulants. Ritalin. Klonopin.
Avoid mold. Avoid allergens. Diet changes. Reduce sugar.
Orthomolecular. Sinus treatments. FIR sauna. Invert body position.
Qi Gong. Massage. Lymphatic Massage.

40%+
Go to bed early/sleep longer. Recuperation.
Treat yeast. Probiotics. Treat methylation.
Avoid alcohol. Avoid gluten. Avoid dairy.
Baclofen. Immunovir. Xanax. Antivirals. Ultramadol. Ibuprofen. Guaifenesin.
Oral magnesium. B12 Injections.
Stay well-hydrated. Electrolyte beverages.
Diaphragmatic breathing. Cranial Sacral. Chiropractic. Yoga. Stretching.
HBOT (7).

30%+
ARVs (7). Antibiotics.
Tylenol. Naproxen. Aspirin.
Provigil. Benadryl. Cymbalta. Trazadone. Neurontin. Wellbutrin.
D-Ribose. Myers Cocktail. Malic acid. Topical magnesium.Vitamin D. 5HTP. Sublingual B12. Cerefolin. Betaine Hcl. NAC. Liposomal glutathione. Testosterone. Melatonin. Cortef.
Kinesiology. Reiki. Tai Chi. Orthostatic conditioning. Soak feet in cold water. Cool shower following exertion. EFT. Distract attention from symptoms. Amygdala retraining. Ayurveda. Eat more produce. Root canal/cavitation removal.

20%+
B Vitamins. Omega 3, 6, 9. ALA. CoQ10. DMG. Carnitine. Iodine. Chinese herbs. Homeopathy.
Xyrem. Altenol. Celexa. SSRIs. Effexor. Amitriptyline. Antihistimines. Caffeine.
Detox foot baths. Chelation. Ionized water. Skin Brushing. Osteopathy.
Neurofeedback. Lightning Process. CBT. Psychotherapy. Exercise. GET.

10%+

Doxycycline. Doxylamine. Zoloft. Prozac. Paroxetine.
Gingko Biloba. GABA. Glucosamine/Chondroitin. EPA. NADH. MSM. Monolaurin. Inosine. Undenatured whey. SAM-E.
Brainwave CDs. Rolfing. Rebounder.

Less than 10%
Vitamin E. Cats Claw. Garlic. Alcohol.

Hi Slayadragon,

I'm glad to hear that you are doing well.

I have a lot of problems with that site does there, techincally and qualitatively. I think they don't ask the right questions or make the distinctions in data collection or analysis that will lead to cures as opposed to symptom alleviation. We worked for the trustees of the plan, looking out for the interests of the members of the plan, patients, not the insurance companies, not the doctors. I've spent decades in software and consulting, collecting information, analysis and using it to for all sorts of purposes to improve the medical care, costs and satisfaction of the members. As even a glance at what you posted will show they mix and confuse symptom alleviation with zero chance of actually curing anything with things that may have a potential of actually curing the disorder. I took ibuprofen for 30 years, Dilantin for 14 years or so, Provigil, benzos, and a bunch of other thimgs for symptoms alleviation but in no way did I confuse that with anything leading to a cure, They alleviated symptoms just enough to stop me from suicide but not enough to give me any quality of life, increase in ability, return of health or anything. That they worked just told me I had lots of things wrong including inflammation and a messed up neurology but that was no news. Basically they are running a popularity contest for relieving a few symptoms. The few things that might affect causes are hidden in the noise.

 

[slayadragon]

Generally, people who do biotoxin avoidance according to Erik's approach find themselves having to avoid fewer and fewer things as time goes on, not more things. Even when MCS issues are intense, they tend to fade substantially within 6-12 months after people get clear. Food reactivities generally go wholly away (though mine did come back after I did an intensive detox -- spurred by means other than methylation support -- that sent a bunch of toxin, I believe biotoxin, sailing through my gut). EMF reactivities tend to go away. Reactivities to "minor" molds (other than Stachy) seem to mostly go away, after a couple of years. Even the reactivities to the very worst toxins decline, after a while.

Of course, in order to make this happen, people need to be practicing avoidance successfully. Like most things, there is a right way and a wrong way to do it. Most people don't get very far with it, because they're not following the right instructions. Erik didn't make up these rules -- he learned them in the military, to deal with hazardous substances (such as nuclear radiation). So other people who are making up things themselves can't expect to do as well as he has, or that people who follow him have.

There is an art to this!

I feel fairly strongly at this point while methylation support may be helpful in allowing people to detox biotoxins, it is neither necessary nor sufficient. I certainly have gotten a lot of detox solely as a result of stoking methylation, but it seems to be a categorically different experience than detoxing biotoxins. And while I'm in agreement with my own physician, Dale Guyer, that anything that people detox is good, insofar as people have huge amounts of stored biotoxin in their systems, they may not be able to get as far as they would like just by addressing the other stuff.

Erik and others have decreased their own reactivity to all substances (per the first paragraph) without doing any methylation support at all, either through exercise (sweating out the toxins) or through cholestyramine. Whether they might have decreased their reactivity even _more_ if they had been supporting methylation, I'm not sure. But certainly, supporting methylation is not the only way to get a recovery in this illness. Avoidance works at least as well, based on the case studies we have at hand.

My own experience was that in my moldy house, Rich's protocol made me sick enough to get into his "adverse events" section. This was from an excess of toxins being released (the effects were dramatic and obvious, I wasn't mistaking a nutritional shortage or anything like that), at the same time that my body wasn't even able to cope with the amount of toxin I was being exposed to. Once I got out of the bad environment, I was able to tolerate the methylation supplements as people are "supposed to." (I also could tolerate a wide variety of other treatments, including anti-virals, that I couldn't tolerate in the moldy house.)

There are lots of people in this community who have gotten benefit from supporting methylation. I've not seen very many other than Freddd who have gotten as far as the people who are actively pursuing biotoxin avoidance have gotten though.

And there are a lot of people who haven't benefited from supporting methylation at all. As is always the case when people don't benefit from a CFS treatment that theoretically should work for them, I wonder if the reason is because their system is simply overwhelmed with the amount of toxic exposure that they're getting. An awfully lot of CFS patients are living in really, really, REALLY bad places!

My feeling is that few enough people have gotten anywhere close to wellness in this illness that we can't afford to eliminate any of the factors that might help people. When someone says "I'm not going to treat X because I think it's downstream from the cause," that seems to me a mistake -- regardless of whether X is defined as methylation block or mold reactivity or herpes family viruses or intestinal parasites or gluten reactivity. Based on everything I know about this disease, people don't get really well from it just by doing one thing. It's way too complex for that, unfortunately.

I'm not sure how this got posed as an argument though. Freddd has said that he had a mold exposure early in his illness and that he got away from it. Rich has repeatedly said that mold exposures can prevent patients from getting well through his protocol. Cort and Mark are both skilled at avoidance of environmental toxins. So I think we're all on the same side here.

Lisa

 

[Freddd]

First of all, Freddd, it's encouraging to hear you don't have to avoid the vast majority of those ex-triggers anymore. At what point (or dosage of methylation supps) did that shift? Was it an abrupt shift or a gradual one?

As for the "categorization" debate, I think you had a few things going in your favor despite not having the success on other forums. 1) Cort wrote an article that clearly support what you were doing and it's a sticky at the top of this thread, 2) Rich has been laying the groundwork for methylation for 4 years so what you're talking about w.r.t to your own recovery was hardly unfathomable both experientially and theoretically.

This is not the case with avoidance. As Lisa alluded to above, avoidance is treated with a stigma. I'm inclined to think that human nature has a lot to do with it: our evolutionary buzz words are "survival of fittest," "war", "attack", "dominate", "top of the food chain." Avoidance goes against all of these because it forces us to cede ground to whatever we are avoiding and admit that, as Klingardt describes it, we are leftovers of evolution, the ones that have struggled to adapt genetically to an increasingly toxic world.

Although you are at the point now that you no longer have to avoid, I understand that Lisa has been doing hardcore methylation supplementation (b12 shots, jarrows sublinguals, deplin, etc) at very very high doses that probably equal yours on average, yet after 2 years of this she is still in avoidance mode and clearly made ill by biotoxins. Perhaps you have some ideas on what she is missing. I don't think the paradoxical folate deficiency applies to her.

So just as you were given a little catalyst en route to receiving the type of traffic you clearly deserve with your story and groundwork, I believe the avoidance experts (namely Lisa whom has put in more work than anyone outside of Erik Johnson on this topic and has the temperament to deal with both side of the topic like no other) can benefit from the same. Because this forum is so "pre-set" (if it weren't I highly doubt XMRV would still be occupying such precious real estate) a little top-down adjustment is necessary at times.

Hi Mojoey,

First of all, Freddd, it's encouraging to hear you don't have to avoid the vast majority of those ex-triggers anymore. At what point (or dosage of methylation supps) did that shift? Was it an abrupt shift or a gradual one?

That actually is a very difficult question. The reason is that there is no clear answer. First, it was gradual but then so was what I adopted. I started the mb12. Epithelial tissues healed quickly. Other tissues more slowly. While muscle pain decreased some, it was not complete and I was unable to grow any. From several spources, including bodybuilders I centered in on adb12. It helped energy generation, aerobic capacity went up some. But still my muscles did not respond ro exercise. Research lead to l-carnitne and I tested 5 or 6 varieties of carnitine. The L-carnitine fumarate did it. Aerobic capacity doubled overnight, literally. The muscles started growing almost right in front of my eyes. My thigh muscle on top was the thicknes of my thumb when I started the carnitine. Now they are back to normal, a ful spread hand across and 25" around. As the muscles grew all over my body, in response to exercise they also healed. Other healing was going on too and my chemical and toxin hypersensitivity started decreasing during this period as my neurological hypersensitivity decreased and the hyper-reflexes calmed down. Fasiculations started quieting down. Extremely tight sore muscles started relaxing and becoming more normal. Instead of exhausted-contracted they relaxed and became normal. This took place over about 3 years. I kept having relapses, sudden worsening of all the inflammatory, hyper responsive symptoms, IBS, cheilitis, allergies, asthma, skin reactions to anything you can name, heart arrythmias, and so on. These things would suddenly start coming on in a couple of days and got worse fast and kept spreading a wider footprint. Each time some things that had come back didn't, it got narrower and narrower.

And then the glutathione. That was a sledge hammer. It brought back the worst very quickly ad caused more neurological damage that has never healed from the most severe folate deficiency I have ever experienced. Then when I tried the folinic acid, BINGO. pararadoxical Folate deficiency. That was what was causing the setbacks, folic acid and vegetable folate.

The symptoms of these induced folate deficiency are very well known BUT they are known as "glutatione detox response (reaction)" and "NAC detox response". Whey also can do this. Other glutathione precursors and precursor pairs can do this. The nausea, muscle effects, heart irregularities and tachicardia, personality changes, mood changes, increased hyper-responsiveness, asthma, allergies and all sorts of things.

Now the weird part. I would have thought that it was either low potassium OR ldeficienct folate. Because potassium drops when methylation starts, when folate is deficient, the methylation and cell reproduction stop like throwing a switch. Epithelial tissues, the fastest responding are also the first to start breaking down.. Mucous starts thickening and can get sticky instead of slick as snot. When folate is restored it often gets more liquid and copious and slippery. So when the methylation is restored but before the tissues heal again, just starting to heal, the potassium drops. The low potassium symptoms are very similar to the low folate symptoms except for the circumstances in which they occur. So at the crossover point in returning to folate sufficiency one can have a double whammy, folate deficiency and low potassium. Also, if one has low potassium going into folate deficiency one can again have both.

During the 6 week glutathione trial and 6 month interval before I took an 8000mcg dose of Metafolin all of the hypersentive responses came back. Ordinary doses that I was taking during that time 1600mcg of Metafolin a day at that time I think, not large, did not a thing. It took specific steps including much larger mb12 injections and adb12 sublinguals to start reversing the glutathione induce symptoms. Since identifying the paradoxical folate deficiency I have been able to head it off by day 2 or 3 and have been able to completely head off the hypersensitive responses that don't develop until more than a week or two later into the induced deficiency.

As for the "categorization" debate, I think you had a few things going in your favor despite not having the success on other forums. 1) Cort wrote an article that clearly support what you were doing and it's a sticky at the top of this thread,

I appreciate that. I made my post into the introduction thread, THE MOST AMAZING METHYLB12 STORY YOU HAVE EVER HEARD I think I called it and came back a day or two later to a note from Cort what he had done. It became a sticky in the past few months.

2) Rich has been laying the groundwork for methylation for 4 years so what you're talking about w.r.t to your own recovery was hardly unfathomable both experientially and theoretically.

I came across Rich's articles on several websites and ended up here based on a Google search. He is largely why I came here. I needed him or somebody like him with his interest in this problem and solving it. We come at problem solving and how we work very differently. As he said elsewhere a few days ago, he takes a top - down approach and I use a middle - out approach. He does biochemistry and I did software, data and consulting for group medical benefits plans, HMOs, benefits and insurance companies handling these kinds of group plans. But actually I did analysis and reports at every level, from the lowest level reports on procdures then by plan and doctor and group and rate zone, every conceivable report for managment to figure out what is going on and what the trends are and os on to reports on managment to plan trustees, our customers. I say our because the team included lawyers, accountants, DDS, MD, OD and other needed specialties, benefits specialists and software/data specialists. The team was made up of about 30 of us from 5 specialized consulting companies. I actually saw everybody only once at a convention. We were all from different cities. I got sick only 5 years into this consulting. Boy did that make it tough. There were times when I didn't work at all for a year at a time. There were other years I couldn't manage more than the 1 to 3 most important conventions. I did 6 a year whenever I was remotely able. We were exhibiters presenters and attenders often. I developed software and phone consulted at home and that was how I made my living for the most part. Then things got worse and I couldn't read because I couldn't focus my eyes a lot of the time. I was having trouble walking. And the docs were puzzled, and puzzled by the overwhelming pain and blinded by it. Everything was called FMS and CFS and I was told I had "an imaginary females disease" by a female neurologist" and that it would cause doctors to treat me badly, and she was right. I was stigmatized. I was treated badly by most but not all. She was a second opinion I needed.

This is not the case with avoidance. As Lisa alluded to above, avoidance is treated with a stigma. I'm inclined to think that human nature has a lot to do with it: our evolutionary buzz words are "survival of fittest," "war", "attack", "dominate", "top of the food chain." Avoidance goes against all of these because it forces us to cede ground to whatever we are avoiding and admit that, as Klingardt describes it, we are leftovers of evolution, the ones that have struggled to adapt genetically to an increasingly toxic world.


I don't know, it made a lot of sense to me to avoid that which makes you sick. We lived in one block construction duplex that was infested with mold. It made us all sick and we moved out. The deposit was kept because the carpet backing was disintegrating from the mold and he blamed us.

I took a different approach than those other people. I looked and saw these reactions to toxins as part of a bigger pattern, as part of a set of symptoms that included a list of what is now over 400. It was part of something on the increase since about 1960. In the 1950s during which I was in elementary school I knew of NO peanut allergies. There was a little asthma, but not what you see today. In all the people I knew, and I knew a lot at that time, nobody had FMS or CFS. There were a small group of women with what I recognize now as early ME/CFS/FMS symptoms to which they gave Miltown and Equanil (meprobamate), the original Mother's Little Helper of mid 60s Stones fame, to shut them up and called them names. My mother was one of them. She was anorexic and almost starved to death while being given Miltown to keep her from complaining all the time of her "all in the head" symtpoms. She also developed severe b12 deficiency and became quite psychotic for about 10 years until one psychiatrist caught on and started her on vitamins instead of ever more powerful antipsychotic drugs and ECT. She was not genetically related and was able to utilize cyanocbl and folic acid and she recovered.

Although you are at the point now that you no longer have to avoid, I understand that Lisa has been doing hardcore methylation supplementation (b12 shots, jarrows sublinguals, deplin, etc) at very very high doses that probably equal yours on average, yet after 2 years of this she is still in avoidance mode and clearly made ill by biotoxins.

I would need to see a COMPLETE list of everything she takes and of all her current symptoms and stop and start symptoms. The method I used was much like debugging a computer program. I did lots of starts and stops of various supplements to see what was causing problems or benefits. There is usually a reason, when closely examined, why these things don't work. While most ot the symptoms would have clear in two years, the ones dependent upon other things that are the last to heal, which includes many of the hyper sentsitive responses might not have, especially if missing a critical factor or two or essential factors or have something causing problems. I consider the odds pretty decent that it's a solvable problem(s). There is a catch, it can often be an unobvious combination of effects which muitplies the possibilites. There are at least 4 and maybe 5 levels of things, the first couple being pretty straightforward and the other 3 being increasingly subtle. The paradoxical folate deficiency might be an example of that 4th or 5th level and I'm sure there are other such things but they are still unrecognized as connected or not recognized. The process of chasing it down can be tedious

Perhaps you have some ideas on what she is missing. I don't think the paradoxical folate deficiency applies to her.

See above. I can think of at least 7 different paradoxical or induced folate deficiencies at least some are often intermittant and each would have to be elliminated for sure. I would want to elliminate all the most probable things for sure. Is she a vegetarian? Vegan? Any subspecialty of vegetarian?

 

[soulfeast]

I have not been here for a while and was looking for more info from others practicing mold avoidance and treatment for mold illness.. and looking for a category wondering where to go to find it. Could not find easily. So I search Mojoey's profile and posts knowing he is interested in this. That's how I found this thread.

I definitely think MOLD ILLNESS at least deserves its own category. Then you can add treatment, avoidance, etc. There is not logical category existing for this and it has numerous sub categories or threads it can support.

 

[triffid113]

Just to blur things up a bit, but where does PQQ fit in? I mean supposedly we can generate new mitochondria with PQQ.

I dunno about sauna to detox...yes, I heard you can detox with it, but u also lose electrolytes and my system has a problem with that. I actually feel like I will pass out. I am afraid to sweat as I have had heat stroke 3x and always seem to have a bad reaction to sweating. Slow exercise doesn't cause so much sweat...so walking and cycling are ideal in my book. I think if one is on a program that induces sweat one should probably supplement potassium at a higher dose.

Trif

 

[slayadragon]

I never heard of PQQ before doing a google search a few seconds ago. How is it that I've not heard of this supplement? Do we have reports of whether CFS patients might benefit from it?

In general, many CFS patients have difficulties sweating and feel worse if they do sweat. Insofar as they get to a more pristine location, they may have more success in doing this. As with all things that promote detox, caution (especially for those not pursuing scrupulous avoidance) is a good watchword!

Best, Lisa

 

[npeden]

I found exercise to be essential for my recovery. I don't know what all it does but one thing that aerobic exercise does it put pressure on the muscles to generate more mitochondria increasing physical capacity. Without the exercise I would never have recovered my pysical capacity. I had to start very low and increase slowly.

FREDD and all. I believe state of Massachusetts has just past a law demanding informed consent for benzodiazepines. I got of gabapentin easily but am still on 3 mg. of klono. I am mthfr c600t and do not sleep. FREDD must get of klono asap. Not we to work, apt very poor. Many here say you know klono well but cannot find posts. After horrific trauma am with safe loving family I do not want to alienate as I detox. Good news is they are very earthed people and I will need to get outside and work somehow. What do you think of backpacks btw? Many thanks.

adding HGH after getting the viruses in control would probably be ideal.

You know, I was just thinking about this the other day. So many athletes use HGH these days to gain speed, heal injuries. etc. So I was wondering if it would help us, particularly people like me and Cityhanger who are trying to rehab physically?

 

[npeden]

Typo. FREDD et al. What about bacopa for klono damage?