In preparing for the Anxiety Summit I put out a call for questions for my methylfolate interview with Dr. Ben Lynch: How Methylfolate can make you Feel Worse and even Cause Anxiety, and What to do about it This question was posted on my blog and since it’s a big topic I feel it deserves a separate blog post
This is the question that Paula posted:
If my understanding is correct, William Walsh of the Walsh Research Institute explains that folates of any kind (methylfolate, folic acid, etc) will cause there to be less serotonin activity at the synapse because folates promote the expression of the SERT enzyme which increases serotonin reuptake. He warns that those who are undermethylators should not take folate if they have cognitive/mood issues, as it will make their anxiety or depression worse. Since those with the MTHFR gene defect are likely undermethylators, his advice contradicts Dr Lynch’s advice regarding the use of folate. Could you ask Dr Lynch if he has any opinion regarding this?
Dr. Walsh has treated over 30,000 patients with mental health problems and has one of the largest lab chemistry data bases in the world. It would be great to see the top doctors collaborating on the methylation cycle as it seems to be a large piece of the puzzle for so many people. Maybe a methylation summit? It’s such a complicated and confusing subject and there seems to be some contradictory information out there.
This was my response:
These are excellent questions you bring up!
The terminology can be confusing so I will recap my understanding here:
Undermethylators/high histamine/histadelia = folate not good
Overmethylators or low folate/low histamine/histapenia = folate helps symptoms
This is from the work of Carl Pfeiffer (his book “Nutrition and Mental Illness” is excellent) and is also written about in Joan Matthews Larson’s wonderful book “Depression-Free Naturally” and Eva Edelman’s “Natural Healing for Schizophrenia.”
As you’re aware Dr. Walsh uses this terminology too. His book is “Nutrient Power.” Here is a snippet from a powerpoint of his called The Role of Epigenetics in Mental Health
Undermethylated mental patients are intolerant to folic acid, but most overmethylated mental patients improve after folic acid supplements.
Folic Acid generates acetylase enzymes that alter histones, promoting expression of SERT and DAT transporter proteins. SERT and DAT enhance reuptake at serotonin and dopamine synapses…. thus reducing NT activity.
For undermethylators, the harmful impact of folic acid at NT synapses greatly exceeds the benefits of normalizing methylation.
So there is a place for methylfolate. I don’t know anything about SERT and DAT transporter proteins so can’t comment on that aspect, but look forward to learning more.
You say “Since those with the MTHFR gene defect are likely undermethylators.” I don’t know that this is a true statement. I would love to see a source for this? It’s certainly not the case with me – I have the MTHFR 1298C defect and have low histamine/histapenia/overmethylation (using the Carl Pfeiffer terminology).
As far as I’m aware Dr Walsh does NOT feel the MTHFR defects play a role in all of this. I hope to learn more and interview him on a future Anxiety Summit.
I have not seen Dr. Lynch write about histapenia and histadelia or the work of Carl Pfeiffer, although some recent comments in this blog refer to Walsh and Dr. Lynch says he’ll check it out.
Dr. Lynch is not a big fan of the terms overmethylation and undermethylation. And when he talks about overmethylation and undermethylation I think he is referring to the methylation process being more effective/speeding up and being less effective/slowing down within a few days of adding methylfolate supplements.
So I feel we have some terminology differences AND some differences of opinions.
Both Dr. Walsh and Dr. Lynch see amazing results with their patients/clients but I agree with you – I’d love to clear up some of the confusion. I’m going send this question and my answer to Dr. Lynch for our interview next Friday. Since he may need to do some additional prep/research, we may have to do a deeper dive into this question on a future summit. Hopefully he’ll be able to add something to the discussion this time.
I did also interview Yamsina (www.thelowhistaminechef.com) for this summit and she too was not familiar with the work of Carl Pfeiffer so it’s exciting that we can all learn from each other and advance the field.
Finally, this is not all bad because it gets us thinking and asking questions and digging deeper.
Paula then has this follow-up question:
The following quote from this link gave me the impression that the MTHFR mutation usually caused undermethylation, but farther down it also references where Dr Walsh says it’s possible to have MTHFR and not be undermethylated.
In your opinion, do people fall into either an overmethylated or undermethylated status or can you be an undermethylator in certain areas of the methylation cycle and an overmethylator in other areas of the cycle? If someone has some traits of an undermethylator and some traits of an overmethylator, what would you recommend?
Dr. Walsh: Based on my massive chemistry database, about 22% of the population is undermethylated and 8% overmethylated. These are inborn tendencies that usually persist throughout life. Undermethylation usually results from single nucleotide polymorphisms (SNPs) that weaken MTHFR or other enzymes in the methylation cycle. Overmethylation is generally caused by enzyme weaknesses (SNPs) in the SAMe utilization pathways.
What are your thoughts on using genetic testing, such as “23 and Me” to create an individual methylation roadmap/treatment plan.
Dr. Walsh: Genetic testing is quite inexpensive, highly accurate, reliable, and will certainly grow in importance in future years. These tests can already identify predispositions for many disorders such as breast cancer and Alzheimer’s and may soon obsolete the need for pap smears. However the reliability of genetic testing for assessing methylation is quite limited at present.
Identifying SNP weaknesses in MTHFR and other methylation-cycle enzymes does not necessarily mean that individual is undermethylated. There is a “tug-of-war” competition between enzyme SNPs that weaken methylation and SNPs in the SAMe utilization pathway that can produce overmethylation.
I believe you’re right Trudy in saying this is not all bad because it gets everyone thinking and digging deeper. I think both Dr Lynch and Dr Walsh bring invaluable information to the discussion, each adding something that can further illuminate how this complicated process works. Thanks again to you for providing us an opportunity to ask questions.
And this is my response:
This is a perfect summary of Dr Walsh’s approach – thank you!
This part is interesting: “Undermethylation usually results from single nucleotide polymorphisms (SNPs) that weaken MTHFR or other enzymes in the methylation cycle. Overmethylation is generally caused by enzyme weaknesses (SNPs) in the SAMe utilization pathways.” I’d love to know which ones… and then he says “However the reliability of genetic testing for assessing methylation is quite limited at present”
His percentages are also interesting and I would challenge this saying it’s very likely based on the people he has worked with: 22% of the population is undermethylated (high histamine) and 8% overmethylated (low histamine).
When I worked with Julia Ross we saw way more low histamine and that is likely because we worked with more women who seem to be prone to low histamine.
This is also what Carl Pfeiffer found: “These are inborn tendencies that usually persist throughout life” and was my understanding until I started learning from Dr Lynch 2 years ago. Now I’m confused too!
Here is a nice post by Chris Kresser: Methylation – What it is and why should you care. I’m going to paraphrase some of it. He says yes do the 23and me testing but: “genetics do not always predict functional methylation capacity”…”I really believe that we need to be testing both”… “There are different ways to test functional methylation capacity. Doctor’s Data has a methylation panel blood test. Health Diagnostics and Research Institute has a Methylation Pathways Panel that’s good and I tend to use in my practice. Genova has a Complete Hormones profile that, among other things, looks at the ability to convert proliferative estrogen metabolites into less proliferative metabolites, and those conversions are methylation dependent. So if you see poor conversion happening there, that’s a methylation issue. The urine organics acids profile from Genova has some methylation markers, active folate and B12 deficiency. And then a urine amino acids profile can be helpful to look at taurine levels and levels of other metabolites in the methylation cycle.”
This above blog has comments about Dr. Walsh and Dr. Lynch too so they are worth a read.
Of course Dr. Lynch supports the fact that just because you have a defect it doesn’t mean you are affected by it so the additional functional testing makes total sense. And he recommends this additional testing too.
I feel it’s time to mesh the old research and prior work Carl Pfeiffer did, the work Dr. Walsh is doing, Dr. Lynch’s work and the new methylation research. And the wisdom from other practitioners like Chris Kresser and people like you who are digging and reading and asking questions
We clearly all have lots to learn! I know I don’t have the answers! This topic has been front and center in my mind for awhile so it’s good to get it down in writing here (so thanks Paula, for asking this question!)
I encourage you to listen in to my interview with Dr. Lynch. We talk about this and acknowledge that we all have gaps and that getting together to talk about all this would be an excellent idea!
And finally, please share if you have had your histamine levels tested (whole blood histamine)? Low or high? and have you found results with the Pfeiffer protocol?
I have tested mine and have low histamine/histapenia and absolutely do benefit from the low histamine protocol.
I’ve read that histamine levels can not be accurately tested as it is a moving target.This was from Dr Janice Jonega, who specializes in allergies, HIT. Confused!
Dereth
I believe she would be talking about plasma histamine. The test I’m referring to is whole blood histamine. And I agree, we need to sort out some of this terminology and get all practitioners on board with all this
Hello Trudy and Methylation Experts 🙂
I enjoyed listening to you on summit. Well done!
As a health professional who has studied and researched functional medicine since 1980’s, I have a question, that is hopefully thought provoking and helps answer a contraindicated answer regarding methylation.
I have Histadalia.
I also have C677T MTHFR gene.
My functional medicine practitioner placed me on 4mg methylfolate.
I agree with Carl Pfeiffer that folate and synthetic folic acid are very bad for Histadaliacs and MTHFR gene carriers as we can’t convert (methylate) these.
BUT -I believe there are alternatives!
Glucosamine salt and Methyltetrahydrofolate.
These sources of folate do not require “conversion” (methylation) – so is well tolerated by MTHFR carriers.
I wonder if the same is true for Histamine.
I’m curious to what Carl Pfeiffer would say about these glucosamine salts, methylfolate and Methyltetrahydrofolate.
I think it’s important to acknowledge these differences.
As the rest of us under methylated need hope… and to understand that Glucosamine Salt and Methyltetrahydrofolate are safe alternatives and beneficial to use.
This is one area that needs further research.
Keep sharing the love Trudy!!
No response required.
But my thinking cap is on and I needed to share
Hi Tanya
Thanks for sharing your results. I wish I had the answers but I can’t be sure enough to recommend this. Also, since we’re all unique what works for one person may not work for another. And then of course, what Dr Lynch says: the amount can vary on a daily basis.
Please share what brand you use that has Glucosamine salt and Methyltetrahydrofolate. It may just be that this form is better tolerated for many folks.
Do you happen to know of other histadelics who tolerate methylfolate?
I’m pretty sure Dr. Walsh says no histadelics should use any form of folate. I’d love to hear his response to this
You did share that you tested whole blood histamine – just clarifying since not everyone is aware of this test.
Hi Trudy,
I am working with a functional MD and we are addressing autoimmunity, adrenal fatigue, SIBO, h.pylori, and now histamine excess. I scored high on the pyroluria questionnaire and we did a test as well so we can start treating.
I have a question about histamine excess: do you recommend any particular treatment for the symptoms of this? Thanks so much 🙂
Megan
Since your functional MD did the histamine test I’d assume he has a protocol? I’d be happy to comment if you can tell me what histamine test you did? whole blood histamine? and via which lab?
Thanks for responding Trudy. My old naturopath did a neurotransmitter test last December and my neurotransmitters were low across the board except for I had very high histamine. Also I have many of the classic histamine overload symptoms like itching, hives, low blood pressure, and anxiety. The only treatment that has been recommended to me was low histamine diet. Do you recommend supplementing with DAO or anything else?
In addition, based on those results and after reading the Mood Cure I tried added 5-htp and tryptophan separately. With each I had very weird vivid dreams and had this keyed up type feeling that effected my sleep. Tried to add in 5-htp with B vitamin synergy and got the same reaction. Any ideas?
( I have autoimmune thyroid disease, sjogren’s, hormone imbalances, adrenal fatigue, SIBO, and h.pylori I’m treating as well. So, lots of variables here)
I’m working with a great FMD now. She pointed me to your work for the pyroluria.
I also react to glutamine powder and everything with glutamine in it. (bone broth, great lakes gelatin, etc.) I get hives and itchy. I’m really hoping that is a leaky gut issue and once my gut heals more I can tolerate glutamine.
This is such a great article, I have been experiencing bad anxiety/panic attacks/fear/voices in my head after for the past six months due to major stress and lack of sleep for three weeks last february/march. I spent much time myself trying to “de stress” and just relax, yet nothing worked. Two weeks ago, I started taking a low dose of ativan for temp relief until the tests came back, i am still continuing to take it but have started supplements.
My tests just came back, and I have low histamine, and over methylating by a lot. For past year I have been taking methylated vitamins (folate and b12) I am now starting on GABA, l theanine and curcumin. and soon some B vitmains (not methylated form)
I also have a leaky gut and not breaking down fats.I am very excited to start feeling better.
Louise
I’m pleased you’re finding answers. I encourage caution with the Ativan and becoming educated about benzos and learning how to taper very slowly. Here is a great interview I did on a prior summit https://www.everywomanover29.com/blog/anxiety-summit-benzodiazepines-risks-vs-benefits/
Hi Louise, just curious how the journey is going? I have a son whos taking the same regimen you chatted about including the Ativan… how are you doing ?
Hi Trudy,
I recently had my son tested through Direct Healthcare Access for pyroluria. In addition to the testing you can buy a consult with Dr. Albert Mensah from Mensah Medical (trained by/works with Dr. William Walsh.)
My son had some success with Dr. Mensah’s supplement protocol (I had been giving him b6 and zinc with some success already but he tweaked the supplements and my son had even greater resolution of anxiety, but not complete resolution). Dr. Mensah then suggested testing for zinc/copper/histamine. My son came back with severe high histamine and Dr Mensah said his anxiety wouldn’t resolve until that was addressed. We are in the process of that now and was told it could take several months. I will update you on his progress. I told Dr. Mensah that if his recommendations for undermethylation worked for my son that I would sing his praises here, as so many people are looking for answers. Time will tell 🙂
For anyone interested you can get all four tests pyroluria/zinc/copper/histamine plus a consult with Dr Mensah that includes supplement suggestions for $450. It is a several week process as they only schedule consults one day a week, I believe.
At that time I spoke at length with Dr Mensah about the confusion regarding folates/methylation etc. and suggested to him that he come to speak at some of these summits, as much of the information on methylation is contradictory to what he and Walsh suggest (he told me even folates in food should be minimized if you are undermethylated. The complete opposite of Dr. Lynch).
I expressed the need for his side of this story to be heard and I think he would be amenable to speaking on this subject if he were invited to. I know he does training alongside Dr Walsh in Australia and Ireland where they are doing a lot more in regards to this than here in the U.S. I believe they have been published or are in the process of that in Australia. I would love to see him/Dr Walsh included in the next Mental Health or Methylation summit. If nothing else, maybe he could steer you in the direction of the work they’re doing in Australia (for the last ten years) where they have more of a track record. He is at Mensah Medical, outside of Chicago.
I love that you are so open to different opinions on this subject and are willing to look at all sides. I believe that Dr. Lynch, Dr. Yasko and Dr. Walsh are all providing real results and it would be amazing to see them get together as I’m beginning to think each has a piece of the missing puzzle which may account for any gaps the other practitioners have in their success rates. Together, maybe they can get a whole picture.
So glad you are here to help bring people to this life changing information.
Paula
Paula
Sorry – I just now see you posted this in August! I hope your son is doing much better! Please do give us an update.
By the way, I don’t favor low dietary folic acid for histadelia/high histamine but don’t have much experience with this form of histamine imbalance.
Thanks for talking to Dr Mensah – we really do need a meeting of all these brilliant minds and I hope to be able to interview each one of them (Dr Mensah, Dr Walsh and Dr Yasko). I’d also love to facilitate a debate-type discussion with them and Dr Lynch and other methylation experts like nutritionist Coleen Walsh.
Hi Paula,
I would like to connect with you, I have a son with OCD and I still don’t find a great diet for him, you knowledge of Methylation and Dr. Walsh Research is impressive.
Not sure if Trudy can send you my email but if its posible will be to talk, I live in Austin-TX and Im from Spain.
Thank you Trudy for all you do , blessing, Carmen
Hello Trudy,
We are also patients at Mensah Medical. Two teenage daughters and myself are all pyroluric undermethylators. Daughters started protocol nearly a year ago and I started in July. We have all had difficulty with nausea, due in part to the smell of the compounded supplements and maybe also due to the zinc or b vitamins. None of us have had much symptom relief. Drs. at Mensah have tried to work with us about the smell and also have halved our supplements.
My youngest daughter (13) had the biggest initial benefit of relief of OCD/Anxiety symptoms. But then stomach issues caused her to miss/lower doses and eventually end up stopping the protocol altogether. She has the biggest anxiety symptoms which have now returned in full force.
I have learned so much from you Trudy. I have listened to several of your webinars and am working my way through your book. Your Pyroluria protocol seems much simpler than that we have been using from Mensah and I am wondering if this would be a better approach for us. Isolating the supplements would be a good way to see (for example) if Optizinc is better than what is in our compound for nausea relief. We are taking 4 or 5 different B Vitamins. Should we just try B6 for now or does that cause some sort of imbalance.
We have also been trying GABA and Tryptophan this last week with great results with my older daughter.
We have been through your list of what we might be missing and have covered much of it. I have signed up to be notified of when you are accepting new patients. I am anxious to work with a professional as I do not feel qualified to work through these issues with my daughters. However, I am also not comfortable doing nothing while knowing this information might help them (and seems to be already).
If there is any way you would consider a phone consult, I would be very grateful. We are at a loss as to where to go from here!
We consulted and lab tested with Dr. Mensah, and also with Dr. Anubrolu (both outside of Chicago, both trained in the Carl Pfeiffer and Dr Walsh protocols) when our daughter became ill, and each had a different diagnosis. Dr. Mensah thought she was BiPolar or predromal Schizophrenic and Pfeiffer Medical’s Dr. Anubrolu thought she was OCD Pure, which I concurred with as I’m certified in mental health and previously ran care facilities specializing in mental health patients. This is not a criticism of Dr. Mensah, diagnosing and treating mental illness is highly complicated. In any case, our girl has MTHFR 1298A, MOA and other methylation issues (Thank you 23 & Me!), as well as mild Pyroluria. Dr. Anubrolu’s protocol has her 90% cured of her OCD Pure (which CAN mimic Bi Polar or Schizophrenia). Perhaps you might consult with Dr. Anubrolu to get a second opinion? May God bless and heal your family, Alana K
Where can I find info. on this protocol. We have been suffering with the same problems for over a year. My 14 year old daughter can no longer attend school or do anything due to crippling OCD.
Greta
Joan Mathews Larson’s book “Depression-Free Naturally” is the best book on this topic – she has a whole chapter on histamine imbalances.
I’d also suggest looking at gluten and even dairy and other food intolerances. Here is a wonderful paper on this very topic https://www.everywomanover29.com/blog/integrative-medicine-approach-pediatric-ocd-anxiety/. Re neurotransmitters, OCD is classic low serotonin so I’d have her do the amino acid questionnaire and a trial of tryptophan and then 5-HTP if that doesn’t help. And then I’d add in inositol if additional support is needed.
Dear Trudy,
I will be getting a histamine stool test (in Europe). What is the difference between stool testing and whole blodd histamine testing.
Thank you for all the work you do and the Passion in helping others!
Mary
I have never heard of the histamine stool test – if you could share a link I would love to take a look and provide feedback
Hi Trudy
I will try to find a link via my doctor. (in English) By any chance do you speak German,the test I will be taking is in Germany. Just thought I would ask.
Mary
Thanks, I’m very intrigued! I don’t speak German but translating things shouldn’t be a problem (google translate).
Trudy,
I have been taking the zinc picolinate and b6 for about 2 weeks now. I am having severe stomach issues, pain and diahrea. Should I stop taking the supplements? Do you have any suggestions.? Thanks Michele
Trudy, I saw my doctor yesterday and he said I was over methylated and should stay away from antidepressants. I’ve tried the b6 and zinc and gaba as you suggested, but my anxiety is off the charts. I’ve had to cancel several appointments lately because of it, and am having trouble just being home alone lately. I’m truly desperate. Do you have any suggestions for me. I would appreciate any help I could get. Thank you Michele
Hi Michele
I am so sorry to hear your anxiety continues to be so bad. Just making sure you saw my response to your question posted here https://www.everywomanover29.com/blog/anxious-introvert-because-of-low-zinc-and-vitamin-b6/ on 3/5/16?
Based on your previous comments on other blog posts here I do think it may be related to the benzodiazepine use and the other medications you are taking. Working with someone to help you with the benzo taper may be your best option right now. Have you connected with benzobuddies.org? They do not advocate any supplements while doing a benzo taper as they feel everyone on benzos are too sensitive. I don’t find this to be true for everyone but it may be the case for you.
In the meantime you may find that full spectrum light therapy and/or essential oils may be gentle enough and yet still give you relief.
I’ve also recently come across the fluoroquinolone toxicity (which appears to be similar to the effects of benzodiazepines and made worse when someone is taking benzos) and wonder if you’re aware of this and ever used any of these antibiotics: Cipro, Levaquin, Avelox and Floxin?
I’d love to know what he means by overmethylated as this can mean different things to different people?
try vitamin d3 at 10.000 UI (not more,NOT less) per day every morning.my severe anxiety now is gone(in 2-3 weeks of taking this vitamin in tablets at this dosage) after 15 years of unexplainable suffering…
Ste
Glad to hear this worked for you. It’s important to retest vitamin D levels and adjust dosage accordingly
If your copper is low, then taking zinc will make anxiety worse. They lower each other, but zinc lowers copper much more readily than other way around. My son becomes much worse, if he takes even a bit of supplemental zinc.
We have had fantastic results working with a GP trained with Dr Walsh’s protocols for undermethylation, MTHFR and Pyrrole. I believe Dr Walsh should be included in any discussions or summits on these topics. He is prudent, cautious and has a vast database to back his philosophies. I have also listen to some useful information from Mensah Medical on gene snps. I agree that getting many of the top people involved in a summit would be a great idea. There is a lot still to be learned and further clarity necessary.
Thanks for sharing – I’m working on it! Great to hear about fantastic results and I’d love to hear who your GP is and he/she helped with.
I do hope you get an interview with Dr. Walsh soon! I would love to hear him weigh in. I and my son are both histadelic and both experienced side effects from taking Luecovorin in combination with methylfolate (which was prescribed for us because of 677T mutations). We both have high histamines. I found Dr. Walsh after our poor experiences trying to supplement our methylation deficiencies (and being told by more than one doctor that we needed more methylfolate). Alot of what Dr. Walsh says holds true for our situation. I would love for more doctors to acknowledge the negative side of methylfolate and for Dr. Walsh to bring his knowledge to the table.
Jill
I am interviewing Dr. Walsh next week for the June Anxiety Summit and I’m really excited to pick his brain. I am sorry to hear you had problems but so glad he was able to help you.
I’m surprised to hear you were prescribed Leucovorin (a reduced folic acid) and methylfolate – presumably based on your 677T ploymorphism? May I ask how much or each and what side effects you had? and if you’re homozygous or heterozygous for MTHFR 677T? Any other SNPs (have you done 23andme)?
Hi Trudy, I’m loving your article and all of the Q&A – very helpful! I am 38yo female with two young kids – I have suffered from severe anxiety/OCD (now depression too), since age 22. The additional stresses of life right now make my condition worse, but i feel like treating the underlying/root issue would help me immensely. About a year ago I consulted with Dr Mensah and found i have low serum histamine, low zinc, high copper. I’m curious how those with low histamine go about increasing their histamine levels? There is SO much info online about lowering histamine, but what about increasing it??
Kakrpa
I prefer to test whole blood histamine and when this is low these nutrients help: vitamin C, niacinamide, tryptophan and folate. Joan Matthews Larson has a whole chapter on histamine in her book “Depression-Free Naturally.” All of these nutrients also boost serotonin which is often low in OCD, anxiety and depression. Inositol also helps OCD and GABA is wonderful for the physical type of anxiety.
Of course dietary factors like blood sugar, gluten, sugar, caffeine etc must be addressed too
Glad you enjoyed this!
Hi Trudy – my comment is nearly identical to the one above your response. Same issues, same lab results: low zinc, low whole blood histamine, high copper. (And I’m negative for pyroluria) Is the histamine protocol in your comment above the one you mention that you follow, in your blog post? I’m confused about l-tryptophan. Dr Walsh doesn’t recommend it in Nutrient Power for low histamine, but I see you do and so do others. Thoughts? Final question: preferred folinic acid brand? Thank you!
Abby
As far as I know Dr Walsh doesn’t ever recommend tryptophan. I learned the low histamine protocol from Joan Matthews-Larson (author of Depression Free Naturally) and it does include tryptophan. However rather than saying low histamine folks should or should not use tryptophan I like to have clients do the amino acid questionnaire, review the precautions and do a trial tryptophan and the other respective amino acids – one at a time. You can read more here https://www.everywomanover29.com/blog/anxiety-amino-acids-overview/.
We also always want to address why serotonin is low too – gluten and malabsorption, not enough quality animal protein, low stomach acid, low zinc, low B6 etc
One more thing – negative for pyroluria on a urine test could be false negative – I use the questionnaire and response to supplements
Thank you so much! I have her book also, and I always test high on the serotonin questionnaire. I bought Lidtke tryptophan based on your recommendation and I think it’s helping a little, but I got worried when I got my labwork back and saw the low histamine and remembered Dr Walsh not recommending tryptophan. Thank you for the other info you included also.
We have closely worked with Mensah Medical, doctors who are trained under the Walsh protocol. I would NEVER go to anyone else for any kind of methylation issue. My son has recovered from serious bipolar; he undermythelates and I do also. Folates of any kind seriously destabilize us; I felt increased anxiety, insomnia and general unhappiness when I accidentally took a multi vitamin containing 800 mcg of Folates. I also struggled when given methyl folate by another doctor. In my opinion, and our family has been successful patients for over ten years of Mensah… The other doctors just do not get the entire picture. It’s extremely complicated and personally I want my practitioner to be the very best in this area – I would accept nothing less than that!
Michele
Thanks for sharing about you and your son and your good results with Mensah Medical.
Hi Trudy
I had a positive urine test (in Australia) for pyroluria and scored very highly on your pyroluria symptoms quiz, so I have recently begun on zinc and P5P. As I added the P5P in I started to have strong headaches and seemed to become more anxious. Do you think this could be because of how the P5P is impacting my methylation cycles and would it be a good idea do you think to assess these somehow? I have recently ordered out for the 23andme test for a better idea.
Sandy
Additional testing often helps but headaches with P5P is not something I often see. It may be too much or may be the brand? gluten? fillers?
Thank you Trudy. It’s Thorne brand. The headaches seemed to improve as I took it on subsequent days so it seems my body was adjusting, but it still did increase my anxiety symptoms. I know that I am low on nutrients generally because I have had gut inflammation, so maybe it is important to resolve that first.
I have also been advised by one doctor that I consult that pyroluria could be a downstream effect of excess oxalates and that I should attempt to treat the pyroluria by taking citrate form mineral supplements to bind to the oxalates before they enter my body from food. Do you have thoughts on this? I have found my health journey very confusing and want to treat the underlying cause, but it is difficult with all the different ideas and factors.
Hello Trudy,
I am curious to know whether Lidtke tryptophan 500mg would be recommended for someone with histadelia/under methylation? I took your amino acid questionnaire and seem to be low in both GABA and Serotonin.
Thank you
Hi Trudy,
My 6 year old son, who has had eczema from 2 months old, had a terrible flare up recently, soon after, this was accompanied by terrible rushes on his belly and lower back, he then started having hallucinations, talks to imaginary friends/cartoons, has severe mood swings, he just gets lost in his won world, am in Kenya and so far am unable to get proper diagnosis.
What is your take? I would really appreciate your response, because as you can imagine, I am at a total loss!
Best Regards
Mary
I’m sorry to hear this and can’t consult via the blog but I’d look at gluten as a tipping point, plus candida or a viral or bacterial infection. Reactions to high histamine foods can also be a factor when there are rashes and hallucinations/mood swings. Yasmina’s blog is a fabulous resource as is our interview https://www.everywomanover29.com/blog/anxiety-summit-histamine-anxiety-depression-schizophrenia/
I would love to see an exchange between Drs. Walsh and Mathews-Larson on the role of histamine in mental health. As I understand it, Dr. Walsh views an abnormal histamine level as primarily a methylation marker, rather than a problem in its own right. Dr. Larson adheres to the Pfeiffer view that disordered histamine (histadelia or histapenia) is a distinct problem to be addressed. Any chance we could see a debate between these 2 scientists?
Eve
This would be great! I’ll see what I can do. I’m wondering how this would look/work when done remotely – me interviewing them both and going back and forth?
I’d like to set up something similar with Dr. Ben Lynch and Dr. Walsh too
Hi Trudy,
Back in February I consulted with a nutritionist who works closely with Dr. Mensah and what he teaches. I got my histamine/copper/zinc/ceruloplasmin levels tested back in February 2016. Everything came back normal except my whole blood histamine was severely elevated and my free copper was a little higher than normal. The funny thing is that I never had extreme mental symptoms only mild anxiety throughout my life. The only reason I got tested was because my anxiety symptoms increased greatly within 24 hours of getting a copper IUD inserted (which I later got removed.) So I was curious to see why my anxiety went up from the copper coil? The nutritionist I worked with told me I was undermethylated for sure and that I needed to start a low folate diet and supplement with zinc, vitamins C, D, & A, selenthiomine, evening primrose oil, chromium, methylated liquid B-12, B-6, P5P, Molybedenum, and a digestive enzyme with each meal. I feel good on the vitamins and a low folate diet but I never really had issues to begin with other than the time I got the copper IUD.
My husband and I want to get pregnant within the next 3-4 months and my nutritionist strongly advises against it because of my whole histamine blood results. I was just wondering if there are any other opinions out there on this topic? I took the MTHFR genetic swab test last week so I am waiting to get those results back. I feel I resonate more with the research of Dr. Ben Lynch and I am hoping I can start planning to get pregnant soon. A lot of what my nutritionist recommends doesn’t make sense to me. I am a very healthy 30 year old and never had any problems with my physical health. The only symptoms I get is very low grade anxiety, mild eczema, fatigue, and gas after eating certain foods. Which I am sure can be all fixed by repairing my gut.
I am nervous to get pregnant now because of all the conflicting information that is out there about folate/folic acid. What is the best pre-natal regimen for an undermethylator or someone high in histamine? Also, are there other factors that could have raised my whole histamine blood test at the time I took it? For example, what about leaky gut or having an allergy to something at the time? I wonder how much of this has an impact on the overall results of the histamine test? I feel like the assumption is to jump right in to assuming high histamine equals undermethylation. Thank you for your help!
Amanda
I can’t consult via the blog but if someone has concerns like this we run tests again. You could also get a 2nd opinion. The anxiety you describe could have easily been triggered by the copper in the IUD and once zinc is back to normal that may be all that is needed. I would also address the “very low grade anxiety, mild eczema, fatigue, and gas after eating certain foods” before getting pregnant – it’s a message from your body and addressing it sooner rather than later is always a good thing
Thank you so much Trudy! This is helpful. I think I will get a second opinion.
I also got my test results back for the MTHFR mutation and I am confused. The report reads I have a normal risk of hyperhomocysteinemia. The Genes I have are MTHFR 677 (genotype 677 C>T) and MTHFR 1298 (genotype AA 1298 A>C). Does this mean I have a MTHFR Mutation or no? Or do I have a heterozygous or homozygous copy of MTHFR? Having this basic information would be very helpful for me. If you provide any consultation on this, or can direct me to someone that can help me, I would greatly appreciate it!
Hi Trudy. What are the recommendations for high whole blood histamine?
Thanks
Faye xxx
Faye
Joan Matthews Larson has a good review of this in her book “Depression Free Naturally” – this is a nice summary http://www.joanmathewslarson.com/HRC_2006/Depression_06/D_roller_coaster.htm
It’s like slipping down the rabbit hole… curiouser and curiouser. Lol
I had a Genova test years ago that hinted at methylation problems. Last fall, by accident, looking for B12 adenosylcobalimin (from reading Medical Medium), I found thorne research B-complex 12. I’ve taken other brands of B vit, doctor recommended before without much improvement. But here I am years later with more of the puzzle pieces found, I actually notice a difference from this one. I’m only taking one per day (along with the usual routine of zinc, mag, D, omega3, K, coQ10 with PPQ, C, and curcumin. I have the results of 23andme which show MTHFD1, MTHFR/C677T, MTRR, GSTP1(lle105Val). After listening to Dr Lynch on histamine, it brought to my attention that yes I do have an inherited skin condition that accompanies itching all over. Possible high histamine? I have doctors appt next week to look into all this.
After reading the above, it seems that what is needed is balance. and genetic testing does not tell us this. Yes I have this genetic mutation, but knowing this is only one of many tools to use.
I will tell you that I have noticed that my sleep quality is improving. Yes I still wake up during the night, but now easily fall back asleep. I haven’t needed a Xanax once to get back to sleep in at least a months time.
What if someone tests deficient in folate/folic acid on a Spectracell test and is an undermethylator? Also high histamine? What then??
I meant to say high homecysteine, (but also high histamine). It seems like supplementing methylfolate is frowned upon, but isn’t it necessary?
Thanks for this very informative reading. I recently started visiting a natural doctor after having about 2 years of not feeling like myself/chronic fatigue syndrome. I thought it was a result of unhealthy lifestyle in my early 20s now that I’m in my late 20s. Then I found Dr. Lynch’s material on MTHFR mutation and read everything I could from him and others. I was certain I had all the symptoms, but the symptoms are not very specific to this mutation vs other problems such as Thyroid/Adrenal etc. Sure enough, a month ago the blood work came back that I have 677TT (homozygous) and a normal 1298AA. For the last year or so I have been religiously almost over supplementing when I didn’t know what was wrong with me, long before I recently found out about MTHFR. I was taking NAC, Glutathione, Milk Thistle blends from NOW/Gaia/Whole Foods, vitamin C, tumeric, SAMe, ALA, etc. The supplements helped a lot with energy, with the exception of SAMe, but the anxiety, insomnia, and fatigue would appear out of nowhere and freak me out because I had no explanation why. I should note, certain supplements like SAMe made my anxiety into mild depression so I stopped taking it. Anyways, now that I know about my gene mutation, I have isolated what I am taking to only active b9/b12. I have gotten my anxiety under control but am so fatigued in the morning, more than normal, and have brain fog all day for the last month I’ve been on methylfolate. I have tried both Dr. Lynch’s brand (800mcg methyl-folate, 1000mcg methyl-b12) and Jarrow (400mcg methyl-folate/1000mcg methyl-b12). I am certain it is making my brain not feel right for about 6 hours after taking it in the morning. Today I went and had a dumb 5-hour-energy shot because I knew it has 30mg of niacin and cheap folic acid. It made me feel so much better and alert. I honestly think I do not need methyl-folate even though I have this mutation, is that possible? Because I am not sure Dr. Lynch’s information is informative for everyone (perhaps just homozygous ones like myself), it can do more harm than good. I honestly think I was better off before just taking the liver assistance/methylation supplements and just knowing I need to avoid cheap folate in high doses and I should skip the methylfolate all together. That is what lead me here…looking for stuff like over/under methylation, but alas, I have no idea which one I am which is frustrating. If you have any advise, that would be much appreciated. The natural doctor is just recommending heavy methylfolate supplementation…
Perhaps I will follow up with her and have homocysteine and histamine levels checked.
Read about niacin on Dr. Lynch’s website. That might be why you felt better.
Jeff, it’s expensive and time consuming, but you need more information. You have to get tested for histamine, copper, zinc, ect.
The more solid information you have, the better your supplementation will be.
I have mthfr a1298c mutation heterozygous, high histamine, low-normal serotonin, low-normal GABA, very low norepinephrine, low taurine, normal dopamine, epinephrine, tyrosine. I exhibit pyroluria and also have a gene for low B6 blood levels. If I am undermethylated but have the mthfr a1298c what do I do? I also have COMT mutation.
Browndawg
I’m afraid I can’t consult via the blog. I’d discuss with the practitioner who has done the testing for you.
Keep in mind that having a polymorphism doesn’t mean it’s expressing and often the basics of real whole food and getting rid of toxins helps many people.
I have Hashimotos and nodules, asthma for years which when on no dairy and sugar and limited to no wheat has improved to temporarily and able to be off pulmicort/ symbicort but not enough to get off singular. I’ve suspected I have MTHFR defect with the Neuro defect SNP- quite a few neuro issues/ diagnoses in the family but not cardiac and my grandmother was taking B 12 shots in the 1960s- yes a very smart doctor. My labs are “ normal” so no Thyroid replacement but gained weight in spite of 1300 net calories a day. My recent folate was normal but low homocysteine was high end of normal and crp was suddenly elevated at 11. Makes sense from labs if suspect MTHFR.
It was recommended I take a product ( can’t find the name right this minute) to help lower my homocysteine level. I think I was able to substitute Jarrows B-right ( can’t find to compare the two products). I felt REALLY bad for the next two days almost like rhabomylosis. Almost positive I’ve got MTHFR defect based on my reaction. Read some people nead to take niacin with it or makes homocysteine levels worse and some people can’t tolerate Methylfolate and have to start at baby doses. Read on Dr. Lynch’s site. Have a Me23 kit just not sent off yet.
Two other interesting things. 1. I tried glutamine powder ( good brand from health food store…)?and also felt like crap. Some can’t tolerate. I also read somewhere it was suggested to take at night. ( maybe from Trudy). I’ve always taken during day even days I’m working nights.
2. Tore something in right hip and after 6 weeks and no change started taking Andrew Lessmans glucosamine sulfate (never hydrochloride) 1500 and chondroitin 1200. ~ mid November. Took 4 first day and within 2 days hip pain gone. Didn’t realize til recently I feel a lot better and have a lot more energy. Probably the most I’ve had in 3 years. After reading the comments it might make sense to me. ( I think this can stimulate blood vessel growth- had a brain tumor a few years ago which was blood vessels so I watch how much/ frequently I take).
I also take iron occasionally, know I’m anemic because of symptoms. Would feel like hitting a brick wall right before my period and I was never a heavy bleeder.
I also periodically take tyrosine- also have to watch due to Hashis- and have energy.
You’ve always got great information Trudy. I continually try to Biohack myself/ body.
I also forgot. I do weird things that affect my serotonin levels. I know my body. Zofran a great but causes me cardiac issues. Years ago when working, not sleeping well, breast feeding constantly and sleep deprivation, was on buspar essentially for panic attacks out of nowhere, after taking baby dose of 5 mg /day ( 1/3 of normal tablets) after ~ 3 months I was zoning – as if I was sedated or taking Xanax everyday. So I went off. ( I’m naturally high strung)! Every once in a blue moon I feel my levels are off and have taken 5 mg buspar and feel like it’s reset my serotonin levels. I also was taking reglan four times a day while working to keep my breast milk production up. That was like taking sleeping pills for me. I could barely function. Switched to blessed thistle for it, didn’t work as well but didn’t sleep all the time with a baby and working. Now I wonder about the synapse. Especially since they keep trying different antidepressants for one of my children.