Phos.Serine did a number on me. It changes the sensitivity of the HPAA, and people I know say my personality even changed as a result of taking it. I think it contributed to my development of CFS through alteration of the hypothalamic/cortisol feedback mechanisms. There is no way I would take a supplement with PS now, and I think it's all but crazy for anyone with hypoadrenal issues to take it. There are other nutrients that can repair mitochondrial membranes without having to resort to seriphos. jmho.
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I had the methylation test done and it came back negative. I suppose that is good. Not really sure but one less thing to worry about
Hi, Lee Ann.
I'd like very much to see your test results, if you would be willing to share them. You could either post them or email them to me at richvank at aol dot com.
Rich
I have decided to stop the protocol for a couple of days as I feel pretty dreadful. I have only worked my way up to 1/2 perque and 1/8th actifolate daily over 6 weeks and haven't even begun the intrinsic b12 yet. The brain and body buzzing and pressure on head neck and chest is extreme as well as headache, pain and emotional lability. Hopefully things will settle down and I can start again soon. One positive change almost immediately from just taking the Perque was mildly improved cognition. My reactions to the protocol of severe constipation is improving and the incredible desire to eat all the time has gone too.
The reactions from being on the protocol has made me even more continually debilitated so when I begin it again I will take the Perque daily but the actifolate only 2nd daily. Hopefully that will give me a bit of a break from continual symptoms.
The reactions from being on the protocol has made me even more continually debilitated so when I begin it again I will take the Perque daily but the actifolate only 2nd daily. Hopefully that will give me a bit of a break from continual symptoms.
Hi Rich,
Is the methylation test also know as the MTHFR?? I think I am saying that right. Also, do you think it is necessary to have one's natural killer cells tested? I keep reading that people w/CFS have very low NKC's. I am really confused w/my dx because I've been told it's atypical. I appreciate your feedback. Thanks
Is the methylation test also know as the MTHFR?? I think I am saying that right. Also, do you think it is necessary to have one's natural killer cells tested? I keep reading that people w/CFS have very low NKC's. I am really confused w/my dx because I've been told it's atypical. I appreciate your feedback. Thanks
- Messages
- 29
- Location
- California
Hi Rich (and anyone else with who can help),
After two weeks, I've slowly worked my way up to one neurological health formula vitamin per day. I'm wondering if it's ok to start the perque b12 now, or if I should wait until I'm able to handle two vitamins a day, per the protocol? Also, should the supplements be taken with or without food? I know the protocol says it doesn't matter, but I feel significantly more flu-like when I take the vitamins with food (as in, I'm completely knocked off my feet). I assume this means they are absorbed better with food. Does this ultimately make a significant difference in their effectiveness? Thanks for any advice!
After two weeks, I've slowly worked my way up to one neurological health formula vitamin per day. I'm wondering if it's ok to start the perque b12 now, or if I should wait until I'm able to handle two vitamins a day, per the protocol? Also, should the supplements be taken with or without food? I know the protocol says it doesn't matter, but I feel significantly more flu-like when I take the vitamins with food (as in, I'm completely knocked off my feet). I assume this means they are absorbed better with food. Does this ultimately make a significant difference in their effectiveness? Thanks for any advice!
Joopiter76
Senior Member
- Messages
- 154
Hi,
I would really start the B12 because it is the most important one. Second You should test if you can handle sulfur containing food. I guess the flu-linke feeling comes from the garlic and broccoli in the Vitamin. This is what it was in my case. I took therefore each vitmain and each mineral in its single form. Try out if you feel also flu-like with a Multivitamin that has only vitamins and no vegetable. A test to test for the sulfur problem is the de Meirleir H2S Test or you do an urine amino acid test. and if taurin is high this also will probably mean you have a CBS problem=bad sulfur toleration. The easiest way is to take a meal with a large protion of broccoli or with onions. If you feel bad its also proven.
I would really start the B12 because it is the most important one. Second You should test if you can handle sulfur containing food. I guess the flu-linke feeling comes from the garlic and broccoli in the Vitamin. This is what it was in my case. I took therefore each vitmain and each mineral in its single form. Try out if you feel also flu-like with a Multivitamin that has only vitamins and no vegetable. A test to test for the sulfur problem is the de Meirleir H2S Test or you do an urine amino acid test. and if taurin is high this also will probably mean you have a CBS problem=bad sulfur toleration. The easiest way is to take a meal with a large protion of broccoli or with onions. If you feel bad its also proven.
- Messages
- 87
Hi Rich,
Many thanks for this. Very helpful. I'll keep you posted on how it turns out.
All my best.
Many thanks for this. Very helpful. I'll keep you posted on how it turns out.
All my best.
- Messages
- 87
Hi Rich,
a quick update:
I'm looking on the list of ingredients for the Teitelbaum daily powder. I don't see any TMG in the list of ingredients, unless perhaps it's disguised under some other name (alas, I don't know my chemistry well enough.) It does however contain 800 mcg of folic acid (at half a scoop a day that makes it 400 mcg) compared to 100 mcg in the neurological formula (x 2 pills a day = 200 mcg). Not sure how much is in the Enlander shot, but that's only once a week and via IM, so hopefully not competing for absorption.
So, if I try this, I'm thinking I will keep the Enlander Kutapressin shots, which I believe have been helpful.
Perhaps I will simply switch the Teitlebaum daily powder with the General Vitamin Neurological Health Formula. I see on the product description it indicates 6 capsules as the recommended daily dose. I take it this would be overkill??
Last bit: My understanding is that the phosphatidyl Serine Complex is helpful for regulating the adrenal cycle. I believe mine are already depressed, so perhaps I should leave this one out?
In any case, I'll consult with my primary care physician before embarking on this.
Many thanks!
a quick update:
I'm looking on the list of ingredients for the Teitelbaum daily powder. I don't see any TMG in the list of ingredients, unless perhaps it's disguised under some other name (alas, I don't know my chemistry well enough.) It does however contain 800 mcg of folic acid (at half a scoop a day that makes it 400 mcg) compared to 100 mcg in the neurological formula (x 2 pills a day = 200 mcg). Not sure how much is in the Enlander shot, but that's only once a week and via IM, so hopefully not competing for absorption.
So, if I try this, I'm thinking I will keep the Enlander Kutapressin shots, which I believe have been helpful.
Perhaps I will simply switch the Teitlebaum daily powder with the General Vitamin Neurological Health Formula. I see on the product description it indicates 6 capsules as the recommended daily dose. I take it this would be overkill??
Last bit: My understanding is that the phosphatidyl Serine Complex is helpful for regulating the adrenal cycle. I believe mine are already depressed, so perhaps I should leave this one out?
In any case, I'll consult with my primary care physician before embarking on this.
Many thanks!
- Messages
- 87
Ahhh, just read a few posts up and you've already answered my phosphotidyl serine complex question, so, no need to answer again. Also, I see TMG = Betaine -- in which case the Teitelbaum powder has 750 mg per scoop.
So, I think I'm clear on most of this, at least for now. Many thanks!
So, I think I'm clear on most of this, at least for now. Many thanks!
- Messages
- 29
- Location
- California
Does anyone know how quickly the Perque b12 should be dissolved? I know that in the B12 thread Freddd and others state that sublingual B12 should take around 45minutes to dissolve in order to be effective, but I don't know if that applies to this protocol. I ask because my mouth produces a lot of saliva, which means the tablet is dissolved almost instantly no matter what I do. I have started the full protocol, minus the phos serine (for now), yet apart from a few aches I'm not really feeling any side effects. Given all that I've read about terrible side effects once the full B12 and folates are started, I'm wondering if the B12 is being absorbed too quickly to make a difference. For the past few days I've even tried smashing it up and taking a little at a time, though that hasn't seemed to make a difference. Don't get me wrong- I'm delighted to have relatively few side effects- as of now, the vitamin still makes me much achier than the B12/folates! (knock on wood.) But I do want to do this right. Is there something I should be adjusting? Thanks for any advice!
Hi, all.
Sorry that I have not yet responded to some of the questions directed to me. I'm pretty far behind in responding to emails in general. The volume seems to be increasing. I'm hearing from more physicians now, and I think that's a good thing, because there is a "multiplier effect" whenever a physician decides to add methylation support to their overall treatment protocol for ME/CFS, as they interact with so many patients. I've also put in some time responding to Freddd's request for analysis of symptoms from the clinical trial that Dr. Nathan and I carried out. I think the results may be of interest to others, also, so I'm pasting it below.
Best regards,
Rich
March 10, 2011
Symptoms Reported by PWCs and Improvements in Them after Treatment with the Simplified Treatment Approach for 6 Months
Rich Van Konynenburg, Ph.D.
Below is a list of symptoms that were included in the checklist used in the clinical study of the Simplified Treatment Approach conducted by Nathan and Van Konynenburg in 2008, reported in 2009*. These data apply to the 21 women who satisfied the strict diagnostic criteria for chronic fatigue syndrome (Fukuda et al. plus post-exertional fatigue and malaise), out of the total of 30 women who participated in the clinical study. The women were asked to indicate whether they did or did not have each symptom in the checklist, both initially and after six months of treatment, without specifying severity.
The symptoms are listed below in descending order of their reported prevalence at the beginning of the study. Note that these women had already been treated by Dr. Nathan for up to 12 years for various aspects of CFS, so the prevalence values for symptoms in this study may not be the same as would be found in a previously untreated CFS population.
For each symptom listed below, the first number shown is the percentage of women who reported the symptom initially. The second number is the percentage decrease in the number who reported the symptom after 6 months of treatment. The study actually ran for 9 months, and there were some changes in the symptoms reported after 9 months (both decreases and increases in the numbers), but individualized treatments were added to the Simplified Treatment Approach between 6 and 9 months, so the results at 9 months do not reflect the effect of the Simplified Treatment Approach alone, and have not been included here.
Note that fatigue was not included in the checklist, but the women were asked to rate their “energy” using a visual analogue scale. On a scale of 1 to 10, their initial average rating was 4.0 (SD 1.7), and their average rating at six months was 6.0 (SD 2.0), p<0.005. Seventy-six percent of the women reported improvement in their energy level.
Strictly speaking, low blood pressure, low body temperature, and hypoglycemia should be considered as signs rather than symptoms, but they were included in the symptoms checklist for this study.
Here are the results:
Chronic aching muscles 100, 33
Reduced task completion 95, 60
Depression 90, 42
Difficulty in staying asleep 90, 58
Joint pain, morning joint stiffness 90, 21
Tingling, “needles and pins” sensation 86, 39
Difficulty in word finding 81, 41
Impairment of concentration, difficulty in assimilating new information 81, 24
Pain in weight-bearing joints 76, 25
Ice pick-like pain or electrical pain that shoots into muscles 76, 25
Low body temperature 76, 62
Hypersensitivity to bright light 71, 27
Blurred vision 71, 47
Weight gain 71, 80
Difficulty with getting to sleep 71, 53
Excessive thirst or frequent urination 71, 47
Chronic sinus congestion 67, 43
Panic attacks or anxiety 67, 57
Ringing in the ears, tinnitus 67, 50
Mood swings 62, 46
Confusion, disorientation 62, 54
Tearing, redness of eyes 57, 50
Increased sensitivity to touch 57, 50
Vertigo, dizziness 57, 67
Night blindness 52, 18
Abdominal pain 48, 50
Rage or inappropriate anger 43, 56
Nausea 38, 37
Hypoglycemia 38, 75
Onset of menopause 38, 62
Shortness of breath 33, 57
Metallic taste or other unusual taste 29, 50
Chronic yeast infections 24, 80
Loss of appetite 24, 80
Chronic cough that mimics asthma 14, 67
Low blood pressure 14, 0 (Yes, zero. This represents only 3 patients.)
Nosebleeds 10, 100
Irregular vaginal bleeding 10, 50
*http://www.aboutmecfs.org/Trt/TrtMethylStudy09.pdf
Sorry that I have not yet responded to some of the questions directed to me. I'm pretty far behind in responding to emails in general. The volume seems to be increasing. I'm hearing from more physicians now, and I think that's a good thing, because there is a "multiplier effect" whenever a physician decides to add methylation support to their overall treatment protocol for ME/CFS, as they interact with so many patients. I've also put in some time responding to Freddd's request for analysis of symptoms from the clinical trial that Dr. Nathan and I carried out. I think the results may be of interest to others, also, so I'm pasting it below.
Best regards,
Rich
March 10, 2011
Symptoms Reported by PWCs and Improvements in Them after Treatment with the Simplified Treatment Approach for 6 Months
Rich Van Konynenburg, Ph.D.
Below is a list of symptoms that were included in the checklist used in the clinical study of the Simplified Treatment Approach conducted by Nathan and Van Konynenburg in 2008, reported in 2009*. These data apply to the 21 women who satisfied the strict diagnostic criteria for chronic fatigue syndrome (Fukuda et al. plus post-exertional fatigue and malaise), out of the total of 30 women who participated in the clinical study. The women were asked to indicate whether they did or did not have each symptom in the checklist, both initially and after six months of treatment, without specifying severity.
The symptoms are listed below in descending order of their reported prevalence at the beginning of the study. Note that these women had already been treated by Dr. Nathan for up to 12 years for various aspects of CFS, so the prevalence values for symptoms in this study may not be the same as would be found in a previously untreated CFS population.
For each symptom listed below, the first number shown is the percentage of women who reported the symptom initially. The second number is the percentage decrease in the number who reported the symptom after 6 months of treatment. The study actually ran for 9 months, and there were some changes in the symptoms reported after 9 months (both decreases and increases in the numbers), but individualized treatments were added to the Simplified Treatment Approach between 6 and 9 months, so the results at 9 months do not reflect the effect of the Simplified Treatment Approach alone, and have not been included here.
Note that fatigue was not included in the checklist, but the women were asked to rate their “energy” using a visual analogue scale. On a scale of 1 to 10, their initial average rating was 4.0 (SD 1.7), and their average rating at six months was 6.0 (SD 2.0), p<0.005. Seventy-six percent of the women reported improvement in their energy level.
Strictly speaking, low blood pressure, low body temperature, and hypoglycemia should be considered as signs rather than symptoms, but they were included in the symptoms checklist for this study.
Here are the results:
Chronic aching muscles 100, 33
Reduced task completion 95, 60
Depression 90, 42
Difficulty in staying asleep 90, 58
Joint pain, morning joint stiffness 90, 21
Tingling, “needles and pins” sensation 86, 39
Difficulty in word finding 81, 41
Impairment of concentration, difficulty in assimilating new information 81, 24
Pain in weight-bearing joints 76, 25
Ice pick-like pain or electrical pain that shoots into muscles 76, 25
Low body temperature 76, 62
Hypersensitivity to bright light 71, 27
Blurred vision 71, 47
Weight gain 71, 80
Difficulty with getting to sleep 71, 53
Excessive thirst or frequent urination 71, 47
Chronic sinus congestion 67, 43
Panic attacks or anxiety 67, 57
Ringing in the ears, tinnitus 67, 50
Mood swings 62, 46
Confusion, disorientation 62, 54
Tearing, redness of eyes 57, 50
Increased sensitivity to touch 57, 50
Vertigo, dizziness 57, 67
Night blindness 52, 18
Abdominal pain 48, 50
Rage or inappropriate anger 43, 56
Nausea 38, 37
Hypoglycemia 38, 75
Onset of menopause 38, 62
Shortness of breath 33, 57
Metallic taste or other unusual taste 29, 50
Chronic yeast infections 24, 80
Loss of appetite 24, 80
Chronic cough that mimics asthma 14, 67
Low blood pressure 14, 0 (Yes, zero. This represents only 3 patients.)
Nosebleeds 10, 100
Irregular vaginal bleeding 10, 50
*http://www.aboutmecfs.org/Trt/TrtMethylStudy09.pdf
C
Cloud
Guest
Hi Rich, if and when you have time, may I ask about Homocystine levels. I know it's involved in the methylation cycle somehow and I've been doing the Simplified Protocol for about a year now. My Homocystine (Ur) is very low at 0.8. I believe it may have been low before starting the protocol.
What does this mean?
What does this mean?
Joopiter76
Senior Member
- Messages
- 154
Hi Cloud,
Rich posted lately that he is very busy so I try to answer this question: if you look at the methionine cycle you can see that methionine on the top is converted to SAMe by the enzyme MAT. Then SAMe is (after giving a methyl-group somewhere) converted to SAH (S-Adenosyl-Homocystein) and this has to be converted to homocysteine. So anywhere there could be your problem. If you knew another parameter it would be very helpful. I guess your methylation cycle is pretty down. Rich usually suggests to do the methylation test. the results will show where the cycle is mainly blocked. Maybe you know if methionine is high or low?
I guess your homocysteine will go up if you ad in sufficient methylation support. If you already have methylation support in place you should consider increasing B Vitamins and magnesium.
Rich posted lately that he is very busy so I try to answer this question: if you look at the methionine cycle you can see that methionine on the top is converted to SAMe by the enzyme MAT. Then SAMe is (after giving a methyl-group somewhere) converted to SAH (S-Adenosyl-Homocystein) and this has to be converted to homocysteine. So anywhere there could be your problem. If you knew another parameter it would be very helpful. I guess your methylation cycle is pretty down. Rich usually suggests to do the methylation test. the results will show where the cycle is mainly blocked. Maybe you know if methionine is high or low?
I guess your homocysteine will go up if you ad in sufficient methylation support. If you already have methylation support in place you should consider increasing B Vitamins and magnesium.
C
Cloud
Guest
Thanks Joopiter,
As mentioned, I have been on very good methylation support for about a year. I have noticed significant improvements from this protocol and therefore, wouldn't have thought the Homocystine low due to a continued methylation cycle problem. If anything, I would have thought I needed to back off with the support a little. I haven't done any of the methylation lab work, hence the "Simplified Protocol". I was hoping this would be as simple as needing to add or subtract something from the regimen, such as methionine (it's low end of normal). But, I really don't know.
Another issue here that may be significant in answering this question is, my lab is for "Homcystine" (Ur), not "Homocysteine". Thanks for you help.
Hi, Cloud.
Homocystine is the oxidized form of homocysteine. Normally the former is pretty low. It can rise if there is a lot of oxidative stress. Having a low value is a good thing.
This is analogous to the relationship between cystine and cysteine, or the relationship between glutathione and its oxidized form, called GSSG. In each case, two of the molecules of the reduced species bind together with a disulfide bond, and this occurs because the sulfhydryl groups on the reduced form of the molecules become oxidized.
Homocysteine is usually measured in the blood by conventional medical labs. In ME/CFS, it can be high, low or normal with respect to the reference range, depending on the person's genetic polymorphisms and on how "filled up" the methylation cycle is, such as how high methioinine is, and that can depend on diet.
Best regards,
Rich
Another possible explanation for the excitotoxicity on methylation treatment
Hi, all.
Last weekend I attended the Orthomolecular Health Medicine Society meeting in San Francisco. Prof. Martin Pall was one of the speakers this year, and I was able to spend some time talking to him. I have known Marty for several years, and even though he and I disagree specifically about what the main mechanism of the pathophysiology of ME/CFS is, I always benefit from talking with him and have learned a lot from him over the past few years.
I think his NO-ONOO hypothesis has had its best reception among the multiple chemical sensitivity (MCS) community, and he has certainly done a lot of work on that disorder. One thing he pointed out to me this time, which I found very interesting, is that several classes of toxins that cause problems for people with MCS produce stimulation of the NMDA glutamate receptors in neurons in the brain.
As you may know, excitoxicity results from overexcitation of this type of neuronal receptor. The symptoms of excitotoxicity include anxiety, insomnia and a "wired" feeling. Many PWMEs/PWCs as well as people with autism experience increased excitotoxicity when they start treatment to lift the partial methylation cycle block. In the past, I have suggested that this might be caused by a temporary further depletion of glutathione when this treatment is started, because initially more of the homocysteine will be routed back to form methionine, and less will go down the transsulfuration pathway to make glutathione. Lowering glutathione in the astrocytes in the brain will lower the ATP production by the mitochondria, and that can be expected to allow glutamate to build up in the synapses of the neurons, because less energy will be available to power the membrane pumps that remove it, and the reaction that converts it to glutamine for recycling back to the neurons.
I still think that that is a viable hypothesis, but in view of what Marty told me, I suggest that another mechanism that could give rise to excitotoxicity on this type of treatment is that when the methylation cycle partial block is lifted, the detoxication system begins to operate better, since it depends to a large degree on sulfur-containing substances, and the methylation cycle controls the overall sulfur metabolism. When the detoxication system's function begins to improve, it can be expected that lipid-soluble toxins that have been stored in the body will be mobilized into the blood before they can be excreted into the urine and bile by the kidneys and liver, respectively. Those that are able to cross the blood-brain barrier may then be able to stimulate the NMDA receptors during the time when their levels in the blood are elevated. I think this would be another possible mechanism that could give rise to excitotoxicity on this treatment.
How might the treatment be improved if this mechanism is in fact going on? I guess the thing that occurs to me is that this might be another reason to take binders, such as activated charcoal, which can help to direct toxins into the stools, rather than allowing them to be reabsorbed and recirculated back to the liver and thence to the circulating blood. Some people have reported in the past that they have found this to be helpful. I'd be interested to know if anyone has found this to lessen symptoms of excitotoxicity while on methylation treatment.
Best regards,
Rich
Hi, all.
Last weekend I attended the Orthomolecular Health Medicine Society meeting in San Francisco. Prof. Martin Pall was one of the speakers this year, and I was able to spend some time talking to him. I have known Marty for several years, and even though he and I disagree specifically about what the main mechanism of the pathophysiology of ME/CFS is, I always benefit from talking with him and have learned a lot from him over the past few years.
I think his NO-ONOO hypothesis has had its best reception among the multiple chemical sensitivity (MCS) community, and he has certainly done a lot of work on that disorder. One thing he pointed out to me this time, which I found very interesting, is that several classes of toxins that cause problems for people with MCS produce stimulation of the NMDA glutamate receptors in neurons in the brain.
As you may know, excitoxicity results from overexcitation of this type of neuronal receptor. The symptoms of excitotoxicity include anxiety, insomnia and a "wired" feeling. Many PWMEs/PWCs as well as people with autism experience increased excitotoxicity when they start treatment to lift the partial methylation cycle block. In the past, I have suggested that this might be caused by a temporary further depletion of glutathione when this treatment is started, because initially more of the homocysteine will be routed back to form methionine, and less will go down the transsulfuration pathway to make glutathione. Lowering glutathione in the astrocytes in the brain will lower the ATP production by the mitochondria, and that can be expected to allow glutamate to build up in the synapses of the neurons, because less energy will be available to power the membrane pumps that remove it, and the reaction that converts it to glutamine for recycling back to the neurons.
I still think that that is a viable hypothesis, but in view of what Marty told me, I suggest that another mechanism that could give rise to excitotoxicity on this type of treatment is that when the methylation cycle partial block is lifted, the detoxication system begins to operate better, since it depends to a large degree on sulfur-containing substances, and the methylation cycle controls the overall sulfur metabolism. When the detoxication system's function begins to improve, it can be expected that lipid-soluble toxins that have been stored in the body will be mobilized into the blood before they can be excreted into the urine and bile by the kidneys and liver, respectively. Those that are able to cross the blood-brain barrier may then be able to stimulate the NMDA receptors during the time when their levels in the blood are elevated. I think this would be another possible mechanism that could give rise to excitotoxicity on this treatment.
How might the treatment be improved if this mechanism is in fact going on? I guess the thing that occurs to me is that this might be another reason to take binders, such as activated charcoal, which can help to direct toxins into the stools, rather than allowing them to be reabsorbed and recirculated back to the liver and thence to the circulating blood. Some people have reported in the past that they have found this to be helpful. I'd be interested to know if anyone has found this to lessen symptoms of excitotoxicity while on methylation treatment.
Best regards,
Rich
C
Cloud
Guest
Thanks Rich,
I thought that may be the case with low homocystine being a good thing. Probably wouldn't hurt to have a homocysteine lab done too.