Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
There was a long post by Rich about all the tests which should be done for a CFS patient. I can't find it here any more. Can anyone tell me where it is?
Rich -
I've been on your protocol for 3+ months, have been sick with a head/chest cold for 2 weeks (partly detox?), and have decided to stay on your protocol while I wait for the results of all of the tests you recommended. [Meaning, not trying Freddd's at this time.]
Meanwhile, I told you about a month ago that except for psoriasis (improved) all of my skin rashes have disappeared. And that my oldest daughter had decided to try the protocol for her skin. She's been detoxing like crazy - lungs and sinus - and she says her skin is clearing up.
This leads me to a few questions.
1. Is there one best test to have my children take, to see who has this deficiency? Or could I just test them by putting them on the protocol for a month (to see if they detox at all)?
2. Does this protocol fix the problem, or just give us the missing pieces? Meaning, is this now a lifelong committment?
Thanks for your help!
Madie
ps - an unrelated question. The holistic health multi has a small amount of folic acid in it. I believe you chose it because it's an easily available multi with much less folic acid than all the others (correct me if I'm wrong!). I thought I was going onto Freddd's protocol, so I bought all of the individual vitamins/minerals, and I have started taking those. The question is: Is this actually a better choice? Or is the amount of folic acid in 2 HH multis too small to make a difference?
This might have been asked before, but is there a good differentiation between good detox and bad symptoms while on the protocol? What would be typical detox symptoms? Thanks
Hi, mellster.
Here are symptoms that were reported by various people during the first 6 months that the protocol was being used that I think are due to detox of toxins or die-off of pathogens:
1. Headaches, heavy head, heavy-feeling headaches
2. Alternated periods of mental fuzziness and greater mental clarity
3. Feeling muggy-headed or blah or sick in the morning
4. Transient malaise, flu-like symptoms
5. Transiently increased fatigue, waxing and waning fatigue, feeling more tired and sluggish, weakness
6. Dizziness
7. Irritability
8. Sensation of brain firing: bing, bong, bing, bong, brain moving very fast
9. Depression, feeling overwhelmed, strong emotions
10. Greater need for healing naps.
11. Swollen or painful lymph nodes
12. Mild fevers
13. Runny nose, low grade sniffles, sneezing, coughing
14. Sore throat
15. Rashes
16. Itching
17. Increased perspiration, unusual smelling perspiration
18. Metallic taste in mouth
19. Transient nausea, sick to stomach
20. Abdominal cramping/pain
21. Increased bowel movements
22. Diarrhea, loose stools, urgency
23. Unusual color of stools, e.g. green
24. Temporarily increased urination
25. Transiently increased thirst
26. Clear urine
27. Unusual smelling urine
28. Transient increased muscle pain
Here are descriptions of the ones I would consider to be serious adverse effects, also during the first six months, which I wrote at the time (July 18, 2007):
1. One person had had a history of severe pesticide exposure and also autonomous multi-nodular goiter, which she described as follows: Gradually the right lobe grew to over 4 cm x 4cm, and had to have right lobe out. . . This same surgeon made the decision to leave the left lobe in, as I had always had trouble with thyroid med back then too. So, they restarted my Synthroid and I stayed on that for [a] few more years. I ALWAYS had shortness of breath and became VERY tachycardic upon ANY activity. . . This person started the simplified treatment approach on March 21, 2007 (actually using higher dosages than suggested for FolaPro and Intrinsi/B12/folate). On May 19, she went to an emergency room with tachycardia, chest pain, trouble breathing, trouble sleeping, elevated blood pressure and fever of 100.7 F. She was admitted to the hospital and released the next day. No evidence was found for heart attack. This person later reported the following: I followed up with my PCP and had CT scan of neck and chest and my goiter is causing tracheal compression, again, and breathing is VERY hard. . . My area hospitals can't do this surgery because my goiter grows substernal, deep in my chest. This person has expressed a desire to continue the simplified treatment approach, but is currently exploring the possibility of first having additional surgery on the multinodular goiter.
2. A second person had a history of lung problems due to both carbon monoxide exposure and exposure to molds, as well as heart-related symptoms. She started part of the simplified treatment approach on May 27, 2007. After having been nearly homebound for ten years, she was able to begin riding a bicycle. However, in early July, 2007, she went to an emergency room twice with severe breathing problems (shortness of breath), a fever of 99.8 to 100.1 F. that eventually lasted for sixteen days, and severe chest and left arm pain. No evidence was found for heart attack. She was diagnosed with an enlarged left atrium and diastolic dysfunction. She has currently discontinued the simplified treatment approach and is under the care of cardiologists.
3. A third person had a history of autoimmune disease, including Sjogrens syndrome. After her fourth dosage of combined FolaPro and Intrinsi/B12/folate, she experienced a moderately severe autoimmune flare, with numerous joint and soft tissue issues, fatigue, pain, etc. She also experienced a severe flare of Sjogrens syndrome, with very dry mouth, dry eyes, and severe eye pain. Six days after discontinuing the supplements, she had a thorough ophthalmology workup and was diagnosed with autoimmune scleritis. She has been given topical steroids and has reported that her eyes are greatly improved.
4. At least two persons experienced a temporary termination of peristalsis of the gut and consequent constipation after beginning the simplified treatment approach. In these two cases, induction of diarrhea cleared material from the gut, but did not restore the peristalsis. In both cases, peristalsis restarted twelve days after terminating the folate-containing supplements. One of these persons had a history of treatment with psychotropic drugs, including Klonopin. About 18 hours after starting to get relief from the constipation, she became very sick, with vomiting, vise-like headache, and shaking. She had many bowel movements over a ten-hour period, and then began to feel better. The other had a history of autoimmune diseases, including Sjogrens syndrome and Autoimmune Ovaritis, as well as diastolic dysfunction.
Best regards,
Rich
Hi, Freddd.
Thanks for sharing your insights about the symptoms people have reported on the simplified treatment approach. (I especially like all the colors!)
You have clearly been a very keen observer of your own experience, and I take your word on it that what you are reporting also represents the experiences of some others.
As I've also written before, I think we do have to acknowledge that people are unique to some degree, inheriting different sets of genomic polymorphisms, which impact how they respond to treatments. And we also have to deal with the issue of having a fairly heterogeneous population in terms of the disorders that they actually have. I think that the new international criteria for M.E. that have recently been published are a step in the right direction toward tightening the specifications on the diagnosis of M.E., so that we can know that we are dealing with a more homogeneous group when we try to apply the results of a study group to others who have M.E.
In view of this heterogeneity, I remain cautious in applying the results I see, as well as those you report, to everyone who has M.E. I think the data you present are interesting, but I have to apply a critical eye to it, just as I do to data that I or anyone else generate.
I know that you have taken a dim view of the possibility that mobilization of stored toxins can account for some of the symptoms reported. I would like to suggest the possibility that indeed, some of the symptoms can be attributed to the deficiencies you have suggested, but that others may be due to mobilization of toxins, and perhaps some can be caused by either, since they are not all very well defined, as you noted.
I think this is suggested both by observations and by what we know of biochemistry and physiology. I take your word, for example, on the symptoms you have been able to correct by adding potassium, and I think this lines up well with the biochemistry and physiology and what we think is going on during the methylation-type treatments.
In particular, it is known that folate is needed to produce purines and thymidine, which in turn are needed to make RNA and DNA, and that these in turn are needed to make new cells. If a person is depleted in intracellular folate, it should be expected that their bodies have not been able to produce new cells as rapidly as is needed. One piece of evidence for this is the elevated value of mean corpuscular volume (MCV) that many have on the complete blood count (CBC). When the erythropoietic cells in the bone marrow do not have enough folate, they are not able to make new cells fast enough, and in the case of the red blood cells, they stuff more hemoglobin into the ones they are able to make, causing them to be larger. We should expect that the same problem must exist for other cell types that are rapidly turned over, such as those lining the intestine. I think it is probable that part of the cause of the "leaky gut" experienced by so many as multiple food sensitivities can be traced back to the inability to make new cells to line the gut rapidly enough.
Given this situation, we should expect that when the intracellular folate levels are raised by treatment that includes both folates and vitamin B12 (the latter being necessary to promote the methionine synthase reaction to use methylfolate and convert it tetrahydrofolate, thus preventing draining of methylfolate from the cells via the "methyl trap" mechanism), the body will now be able to start making new cells at a faster rate to make up for the deficiency of new cells that has existed during the illness.
As you know, new cells require more than RNA and DNA alone. They need ionic species, amino acids, and fatty acids in particular. The main ionic species they need is potassium ions. There are reservoirs elsewhere in the body for most of the species needed to make new cells. For examples, the muscles are a reservoir for amino acids in the form of protein, and the bones store a great deal of phosphate. But potassium is found mainly inside cells (98%), which are likely in short supply in this illness because of the longstanding intracellular folate deficiency, so this potassium would likely not be very available for making new cells.
It is therefore to be expected that a potassium deficiency would appear if the rate of production of new cells were suddenly increased, as from a protocol including both high-dose B12 and folate. The known symptoms of potassium deficiency, which shows up as low levels of potassium in the blood (hypokalemia) depend on the individual and the severity of the potassium deficiency. These symptoms involve the heart, the skeletal muscles, the smooth muscles, and kidney function.
The heart exhibits arrhythmias, and in severe potassium deficiency develops ventricular tachycardia which can lead to death. The skeletal muscles exhibit weakness, fatigue, cramps, fasciculations and rhabdomyolysis (breakdown of muscle tissue). Breathing can become difficult because of effects on the muscles involved in breathing. Smooth muscle problems include constipation and ileus (a paralytic blockage of intestinal transport). Severe potassium deficiency affects the nervous system, causing flaccid paralysis, hyporeflexia, and tetany. Kidney-related symptoms are excessive urination and thirst.
You have suggested that the two cases of constipation (or perhaps ileus) that were reported on the simplified treatment approach may have been due to temporary potassium deficiency. I think you may be correct about this. I note that additional fatigue as well as weakness was also reported on this treatment, and perhaps they were also due at least in part to temporary potassium deficiency. The transient increased muscle pain that was reported may also have been due to temporarily low potassium. There were two cases of difficulty breathing. One was apparently due to swelling of an existing goiter, but the other may have been at least partly due to temporary potassium deficiency. Perhaps the temporarily increased urination, transiently increased thirst and clear urine that were reported can also be attributed to low potassium. I think it is notable that arrhythmia was not reported. As I have posted in the past, I think that problems with potassium deficiency are likely to be less severe if lower dosages of B12 and the folates are used, as in the simplified treatment approach, so that the body is able to respond more gradually, and potassium intake from food is more likely to be able to keep up with the demand. Nevertheless, there do seem to be some symptoms that can be attributed to potassium deficiency even with a "low and slow" methylation treatment.
What about the evidence that mobilization of toxins may be responsible for some symptoms on this type of treatment? From the biochemical point of view, it is known that the body's detoxication system relies to a large extent on sulfur-containing substances, including glutathione, cysteine, taurine, and sulfate. We know that the methylation cycle lies at the beginning of the body's sulfur metabolism and that it normally exercises control over the sulfur metabolism. We also know that in M.E. there is a partial block in the methylation cycle and that the sulfur metabolism is dysregulated. In particular, glutathione is depleted in most cases, and often the levels of cysteine and/or sulfate are low. Under these circumstances, we should expect that the detox system will not be operating properly, and toxins will therefore build up in the body. Indeed, many people with M.E. have taken a detoxication profile panel and have typically found low Phase II glutathionation, and sometimes low sulfation as well. Lab measurements in many cases have found elevated levels of toxic heavy metals, in particular, and analysis of the mitochondria have shown elevated levels of both toxic metals and organic toxins in cases of M.E.
We should also expect that when the operation of the methylation cycle is restored and glutathione is brought up to normal, that the detoxication system would begin to operate more normally, and would start to work down the backlog of stored toxins. The action of the detox system in various cells, tissues and organs is known to first move toxins into the bloodstream. There is a time lag before these toxins are removed from the blood by the kidneys, liver and sweat glands,and are excreted. If the digestive system is not functioning well, more of the toxins excreted into the gut in the bile from the liver will be reabsorbed and can stay in the blood longer. It can be expected that the higher levels of toxins temporarily in the blood will affect the cells of the body in general, and that this might lead to a variety of temporary symptoms.
There is evidence that toxins are mobilized and excreted when methylation treatment is given. In autism. which shares the partial methylation cycle block with M.E., Dr. Amy Yasko has compiled large amounts of data showing increased excretion of heavy metals during this type of treatment. Some who have M.E. have also observed this in urine toxic metals testing. Repeat mitochondrial analysis in some has shown clearance of toxins formerly found in the mitochondria after being on methylation treatment for a few months.
Reports of the benefit for ameliorating symptoms of adding substances known to bind toxins in the gut, such as activated charcoal, or substances known to promote increased excretion of certain toxins (weak acid type) by the kidneys, such as lemon juice, are further evidence that toxins are being mobilized during methylation-type treatment.
Considering symptoms that would be likely to result from increased mobilization and excretion of toxins, it seems that the most direct connection could be made with those that involve the main known routes of excretion of toxins, i.e. the urine, stools and perspiration. Transient changes in the amounts, smell, or appearance of these substances would be very suspect of being caused by excretion of toxins, in my opinion. The metallic taste in the mouth would also be suspected of being due to mobilization of toxins, in my opinion. I think that skin-related issues such as temporary rashes and itching could be caused by mobilized toxins as well.
I realize that you have attributed several of the reported symptoms to folate deficiency, based on your experience, and I have no reason to doubt your interpretations in your own case.
However, as I've noted before, I am not sure how widespread this "paradoxical folate deficiency" that you've reported to be caused by taking folic or folinic acid or glutathione-related substances actually is in the M.E. population. It does appear, though, that there are some others who do share your experience. I think it's also possible that some symptoms that are not very specifically defined could be produced by more than one cause in different people.
So in conclusion, you have convinced me of the importance of potassium deficiency in producing symptoms during methylation-type treatment, even treatment that is more "low and slow" than the protocol you advocate. I am also willing to believe that in your case, and in some others, some symptoms may be caused by induced folate deficiency caused by some substances in some of the methylation protocols. As I've noted in the past, I agree with you that the folic acid form of folate is best minimized. However, I continue to believe, based on the evidence I've cited, that mobilization of toxins is likely to account for some of the reported symptoms as well. So that's where it currently stands as far as I'm concerned, but I am continuing to keep an open mind for more evidence one way or the other, and I very much appreciate your sharing your experience and insights.
Best regards,
Rich
My experience w supplements is that i generrally respond in seconds, minutes, hours or days if i have a good response. Rarely has my initial response improved over weeks or months. When I tried Deplin a few months ago I had am immediate dramatic response that then waned. I am thinking that three months is a long time to stay with the protocol without tweaking it if things continue as they are now. Rich, I appreciate your care and caution, but I also feel, like Fredd, a sense of urgency about my nervous system which is having many frightening symptoms. I am thinking to go another week and then try another from of B12. I am taking Hydroxy now. Any harm in trying that?
I have read these posts with interest. Since being on the SMP - about 2 weeks - with some extra c, d, magnesium, potassium and fish oil things are looking up. My neck (which has never improved in almost 20 years) is consistently the best it's ever been. I'm amazed each day I wake up that it's still good and this isn't a flash in the pan. I can't put into words how happy I feel about this one thing - just to have a neck that is looser and moves more freely without as much crunching and cracking is wonderful
My sleep is better too. Initially I had a strange experience of still waking a lot but the night feeling incredibly long - so I felt like I'd had 2 or 3 nights sleep in one go! Strange but there it is. The last 3 nights I have just slept much more solidly than I can ever remember. Again- priceless to me.
My facial skin is puzzling me. The first 3 days on the SMP my skin was transformed from dry, flaky round my nose and chin, slight cuts at corners if mouth, to smooth and almost perfect. It seemed to be after the hydroxyb12 drops that it improved. For the last week it hasn't been as good and I don't know why. Now it's more flaky again when I wake in the morning especially and the small cuts are slightly visible. Is this suggesting I need more b12? I know rich suggests staying on the SMP as it is for 3 months ... But in my case I wonder if the improvements plus this indication suggest I need a larger dose? The trigger point in my jaw that was improving also now seems to have backtracked (although a 15 year collection of them in my trapezius is softening!!)
I'm going to get the metabolic profile, amino acid plasma and a GI test ASAP and still waiting for the methylation panel results....
I have read these posts with interest. Since being on the SMP - about 2 weeks - with some extra c, d, magnesium, potassium and fish oil things are looking up. My neck (which has never improved in almost 20 years) is consistently the best it's ever been. I'm amazed each day I wake up that it's still good and this isn't a flash in the pan. I can't put into words how happy I feel about this one thing - just to have a neck that is looser and moves more freely without as much crunching and cracking is wonderful
My sleep is better too. Initially I had a strange experience of still waking a lot but the night feeling incredibly long - so I felt like I'd had 2 or 3 nights sleep in one go! Strange but there it is. The last 3 nights I have just slept much more solidly than I can ever remember. Again- priceless to me.
My facial skin is puzzling me. The first 3 days on the SMP my skin was transformed from dry, flaky round my nose and chin, slight cuts at corners if mouth, to smooth and almost perfect. It seemed to be after the hydroxyb12 drops that it improved. For the last week it hasn't been as good and I don't know why. Now it's more flaky again when I wake in the morning especially and the small cuts are slightly visible. Is this suggesting I need more b12? I know rich suggests staying on the SMP as it is for 3 months ... But in my case I wonder if the improvements plus this indication suggest I need a larger dose? The trigger point in my jaw that was improving also now seems to have backtracked (although a 15 year collection of them in my trapezius is softening!!)
I'm going to get the metabolic profile, amino acid plasma and a GI test ASAP and still waiting for the methylation panel results....
My experience w supplements is that i generrally respond in seconds, minutes, hours or days if i have a good response. Rarely has my initial response improved over weeks or months. When I tried Deplin a few months ago I had am immediate dramatic response that then waned. I am thinking that three months is a long time to stay with the protocol without tweaking it if things continue as they are now. Rich, I appreciate your care and caution, but I also feel, like Fredd, a sense of urgency about my nervous system which is having many frightening symptoms. I am thinking to go another week and then try another from of B12. I am taking Hydroxy now. Any harm in trying that?