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Strange health issues...genetic?

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Hi All,

New to this site, struggle with fatigue and anxiety as well as some strange undiagnosed issues. 5 years ago I went through a extremely stressful time and it’s like a fuse blew and my health has never been the same. Seen doctors, therapist, naturopaths. Was having a lot of anxiety and still struggle with that at times, but feels more metabolic than situational.

Labs showed Adrenal fatigue, borderline prediabites, elevated liver enzymes, high cholesterol, candida, low vit D.

Tried two adrenal fatigue protocols, emdr, Epstein Barr protocol, and gut/candida diet and just ran a QEEG. All labs are back in range except neurotransmitters, cortisol, glycine. Low histamine. Started taking lithium orotate, helping a lot with anxiety.

Currently have low dopamine and very low norepinephrine and epinephrine. I used to be very active and played sports, have had to scale back. Main issues are when I play basketball or lift weights I have great energy, eat, then 3-5 hours later hard crash. Brain fog, low mood, very fatigued and tired. Can go on up to 24 hours. On off days still have mood and anxiety issues. Tried tons of diet, supplements, and herbs…including Tyrosine and Mucuna. Helped focus, but still crash. HRV says I’m almost always stuck in a sympathetic state and QEEG says right front of brain is pretty underpowered (3 deviations). Seems like it could be genetic or a recovery issue? Anyone seen anything like this or have similar genetics? Appreciate any insight, thanks!



E1CCC93A-AAE8-4C97-B444-CD0D9736AD48.jpeg
 
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Hello and welcome! You have my empathy as you have some very health impactful SNPs (single nucleotide poplymorphisms) there and your story sounds very familiar and makes a lot of sense as you have many of the same SNPs as me.

First thing I suggest, take a look at this website: http://heartfixer.com/AMRI-Nutrigenomics.htm and look at specifically the write ups on CBS, BHMT, MTHFR and very importantly for you are the NOS and SOD SNPS so look at those sections.

You'll also want to get informed in detail about methylation and folate metabolism as well as the nitric oxide, and glutathione synthesis cycle.

I would also look at material by Amy Yasko and Ben Lynch as they are probably the best methylation doctors and they have lots of online material about these SNPs.

For me when I learned I had these SNPs, I started methylfolate and molybdenum immediately as if you're like I was, my BH4 was very low, my ammonia was very high (can you smell it in your sweat after a workout? I could very strongly) my sulphates and sulphites were very high (causing anxiety and impaired sulfation pathways and brain fog) and depending on your lifestyle, you may be like me, very toxic with mercury, copper, cadmium and aluminum.

The SOD SNPs caused me to have malfunctioning sulfur metabolism which only piles on to the CBS and BMHT SNPs and exasperates those problems. Essentially, CBS, BMHT SOD all contribute to the same problem with sulfur. Because of the super high bodily sulfur load, my glutathione metabolism was also severely compromised which is another reason I was so mercury toxic.

I also began avoiding all folic acid and folinic acid. MTHFR and MTHFD SNPs can cause problems with both folic and folinic acid and you have several of these and this made my folate deficiency much worse and caused me panic attacks. I also avoided sulfur containing supplements such as SAMe, NAC, glutathione, ALA, taurine, glycine, glutamine, MSM etc. and high sulfur foods like eggs, cruciferous veggies etc. for a while until my urine sulfates were normal. I did this for years while taking folate and B12 as when I started taking these, my sulfates and CBS would up-regulate (making more SAMe) causing more anxiety and brain fog and increasing my need for molybdenum and zinc. Once I got this under metabolic control, I was able to abandon the low sulfur diet ( I really love eggs!) but I still mostly avoid the supplements except ALA as I have done some Andrew Cutler chelation for mercury.

I also started a vitamin B12 supplement. First, with Hydroxycoblamin and then later with methylcobalamin and adenosylcobalamin (NOT CYANOCOBALMIN!) as the b12 is necessary for folate to work and higher dose folate can cause b12 deficiency and create other health problems so you need to take folate and b12 together. I also have several MTR and MTRR SNPs which necessitate high dose b12 for me. You only have one MTRR SNP so your b12 need may not be as high. This website and in particular this forum has encyclopedias worth of b12 and folate methylation information so you should be able to find the info you need here to get started. You'll want to read as many posts as you can and particularly posts by Freddd and Rich VanK.

Lastly, for me diet was the most important aspect of my recovery. My diet isn't fun but it works wonders. Specifically I eat a low oxalate, low salicylate, sulfite free, organic as possible strict paleo diet. This means no gluten, no dairy, no grains, no sugar (or sweeteners of any kind e.g. honey or maple syrup this is for the Candida), no alcohol (all alcohol has sulfites which aggravate SOD and CBS and also impairs the liver). This was extremely important in my recovery as again, like you, I was overweight pre-diabetic with Candida overgrowth, high liver enzymes and adrenal insufficiency.

If you start this kind of protocol, start low and go slow is the mantra around here as you will experience some dramatic metabolic shifts and detoxification and it could cause what's called refeeding syndrome with potassium deficiency. This can be very dangerous so get educated and if you have the right medical resources use them.

Don't hesitate to contact me if you have more questions about my experience with these SNPs.
 
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Thanks Hip, after researching PEM sounds exactly how the “crash” feels.

Dr.Mullin WOW thanks for spending the time to write all that out, bless your heart.. Super helpful and interesting, I am pretty familiar with Amy Yasko and Ben Lynch, both are great! I’m on step one of Amy’s protocol (getting lithium orotate balanced). Makes a huge difference. Also doing Bens gene scrub.

Looking at my genes, since I’m hetero for CBS , BHMT, and SOD looks like I’m still impacted to a large degree. Would this cause low glycine levels too even if supplementing with protein and directly with it? I also notice when I work out I perform a lot better on citrulline, but if I take it for too long then joints/bones get achey. I wonder if that’s related to nitros oxide ammonia issues. Also was taking methylated b liposomal complex. Fixed my b12/m.fol/thiamin deficiency, felt great for a bit but then suddenly one day started feeling sort of anxious and unsettled after taking it so I stopped. Trying the lithium balancing protocol for this reason.

Also interestingly enough I can’t even tolerate a beer anymore either so I stopped drinking the last few years. Used to not have any of these problems till that period of stress I went through.

Thanks again for trying to help me. I really really appreciate it.
 
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Hi Mesita,

Sorry I'm not a doctor my initials are D.R. in my email address. I'm actually an aerospace systems engineer.

I've never used citrulline so I don't have any experience with it but yes, it is a factor in NOS and ammonia metabolism. It may be causing a detox reaction?

I can't comment on the low glycine, as I've never had mine measured. I did use it very early on to help boost glutathione and heal my gut and to counter act high glutamate but I don't use it anymore as it stopped having any effect once I was on the advanced methylation protocol with mega dose b12 and folate.

I have to say, I am skeptical whether your folate deficiency is fixed. The damage done to bodily systems after years of deficiency for me was extensive and has taken years to correct. Once the symptoms show up it means the damage is there. There's a member on this forum that has cancer and the doctors told her it was due to years of folate deficiency. She has similar SNPs to you and I.

The anxiety etc. you were feeling on the b-complex could have been the start of neurological healing or detox or a treatment conflict with other SNPs (I have COMT SNPS which mean under certain conditions methyl donors will send my adrenaline sky high). I went through years of this. I was diagnosed with panic disorder and OCD and unfortunately for me, the anxiety was a necessary part of the healing process as whenever I was detoxing or increasing methylation, my glutamate would rise causing anxiety (I have a bunch of GAD SNPs which make this much worse for me as I am also on the autism spectrum). I had damage in my amygdala that was caused by the methylation issues as well as multiple concussions from various sports. I used Kava and Lemon Balm with great effectiveness to curb the anxiety. Hopefully the lithium also helps, but I wouldn't think I could stop taking b12 and folate with your SNPs.

Another supplement that has been indispensable to me for years is TMG. It saved my liver and has helped me keep my SAMe to SAH ration stable. It's also great for BMHT and CBS SNPs. I was also deficient in choline so that one has been crucial for my liver as well.

I'm just learning about lithium and started taking a low dose trace elements supplement but it's very low dose I get a few hundred micrograms from that. In Canada, you can't get Lithium orotate without a prescription from a psychiatrist and companies like Iherb and eVitamins won't ship it here.

If you are having joint pain I would look into your oxalate status and consider a low oxalate diet. Oxalate problems are very common among chronic fatigue sufferers and can contribute to all of the symptoms you have. I have a theory that impaired methylation increases oxalate storage and problems.
 
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Hopeful2021

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Hello and welcome! You have my empathy as you have some very health impactful SNPs (single nucleotide poplymorphisms) there and your story sounds very familiar and makes a lot of sense as you have many of the same SNPs as me.

First thing I suggest, take a look at this website: http://heartfixer.com/AMRI-Nutrigenomics.htm and look at specifically the write ups on CBS, BHMT, MTHFR and very importantly for you are the NOS and SOD SNPS so look at those sections.

You'll also want to get informed in detail about methylation and folate metabolism as well as the nitric oxide, and glutathione synthesis cycle.

I would also look at material by Amy Yasko and Ben Lynch as they are probably the best methylation doctors and they have lots of online material about these SNPs.

For me when I learned I had these SNPs, I started methylfolate and molybdenum immediately as if you're like I was, my BH4 was very low, my ammonia was very high (can you smell it in your sweat after a workout? I could very strongly) my sulphates and sulphites were very high (causing anxiety and impaired sulfation pathways and brain fog) and depending on your lifestyle, you may be like me, very toxic with mercury, copper, cadmium and aluminum.

The SOD SNPs caused me to have malfunctioning sulfur metabolism which only piles on to the CBS and BMHT SNPs and exasperates those problems. Essentially, CBS, BMHT SOD all contribute to the same problem with sulfur. Because of the super high bodily sulfur load, my glutathione metabolism was also severely compromised which is another reason I was so mercury toxic.

I also began avoiding all folic acid and folinic acid. MTHFR and MTHFD SNPs can cause problems with both folic and folinic acid and you have several of these and this made my folate deficiency much worse and caused me panic attacks. I also avoided sulfur containing supplements such as SAMe, NAC, glutathione, ALA, taurine, glycine, glutamine, MSM etc. and high sulfur foods like eggs, cruciferous veggies etc. for a while until my urine sulfates were normal. I did this for years while taking folate and B12 as when I started taking these, my sulfates and CBS would up-regulate (making more SAMe) causing more anxiety and brain fog and increasing my need for molybdenum and zinc. Once I got this under metabolic control, I was able to abandon the low sulfur diet ( I really love eggs!) but I still mostly avoid the supplements except ALA as I have done some Andrew Cutler chelation for mercury.

I also started a vitamin B12 supplement. First, with Hydroxycoblamin and then later with methylcobalamin and adenosylcobalamin (NOT CYANOCOBALMIN!) as the b12 is necessary for folate to work and higher dose folate can cause b12 deficiency and create other health problems so you need to take folate and b12 together. I also have several MTR and MTRR SNPs which necessitate high dose b12 for me. You only have one MTRR SNP so your b12 need may not be as high. This website and in particular this forum has encyclopedias worth of b12 and folate methylation information so you should be able to find the info you need here to get started. You'll want to read as many posts as you can and particularly posts by Freddd and Rich VanK.

Lastly, for me diet was the most important aspect of my recovery. My diet isn't fun but it works wonders. Specifically I eat a low oxalate, low salicylate, sulfite free, organic as possible strict paleo diet. This means no gluten, no dairy, no grains, no sugar (or sweeteners of any kind e.g. honey or maple syrup this is for the Candida), no alcohol (all alcohol has sulfites which aggravate SOD and CBS and also impairs the liver). This was extremely important in my recovery as again, like you, I was overweight pre-diabetic with Candida overgrowth, high liver enzymes and adrenal insufficiency.

If you start this kind of protocol, start low and go slow is the mantra around here as you will experience some dramatic metabolic shifts and detoxification and it could cause what's called refeeding syndrome with potassium deficiency. This can be very dangerous so get educated and if you have the right medical resources use them.

Don't hesitate to contact me if you have more questions about my experience with these SNPs.
Hello DrMullin30,

Your post was really interesting. I don't know how to save a post, do you? I sure would like to read this information again. I came across this because I was searching glutathione in this forum.
In the summary in the search, displayed some thing about nitric oxide. But I didn't see united oxide mentioned in your post. I'm new to this forum, so maybe I made a mistake.
Question was do you do blood restriction training? My understanding is that it increases nitric oxide quite a bit.
I also follow low oxalate and found that they contribute greatly to massive 3 day crashes.

it's nice to "meet" you here.
Thank you.
 

Mary

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I don't know how to save a post, do you?
Hi @Hopeful2021 - you can bookmark a post for easy access when you want to see it again. To bookmark a post, click on the little bookmark icon which is immediately to the right of "Alerts" near the top right-hand side of the page.

One more tip - to tag someone so that they will get an alert when you respond to them, put the @ sign in front of their user name like this @Hopeful2021 or this @Mary , and they will get an alert you have tagged them :nerd:
 
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Hi Hopeful, I have read a few articles about BFRT (Blood flow restricted training) mostly by Dr. Mercola and I have been considering trying it for a while but I haven't gotten around to getting the bands. Then today I realised a regular tensor bandage would probably work and I have a couple of those so I plan to try it in the coming weeks. One of the advantages is supposed to be increased NOx to the muscles.

Nice to meet you as well!
 
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Mary

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One more tip - to tag someone so that they will get an alert when you respond to them, put the @ sign in front of their user name like this @Hopeful2021 or this @Mary , and they will get an alert you have tagged them :nerd:
@drmullin30 - I'll give you the same tip I gave @Hopeful2021 above ;) It's really helpful to put the @ sign in front of a user's name so they are tagged - so they will get an alert you are responding to them -- just typing their name won't generate an alert.

btw, BFRT sounds very interesting! I'd be interested in seeing how you do with it. This is new to me, but I think my NO is low, it was when it was last tested 5 years ago, I know my poor muscles have almost no tone due to forced inactivity and I would love to be able to get more bang for my buck, so to speak!
 

Hopeful2021

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@Mary
Thank you for those tips.

here's my first try at including a link.
This is about Kaatsu (aka blood restriction training and just some of the research. There are whole conferences on the research generated. Kaatsu is a big deal the past few years.)
I don't think they actually mention Nitric Oxide measurements or even NO in passing. Maybe they do. But in any event, there's lots of other juicy facts about this therapy.
Kaatsu is being used in japan to increase NO levels specifically for that scary virus that is affecting the world. It is already a standard therapy for the elderly abd was at one time recommended by doctors.

stem talk
 

Mary

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@Hopeful2021 - thank you so much for the heads up! I will watch that video when I have a bit more time and energy, this sounds very interesting, it's all new to me! FYI, you might find beets and beet juice helpful to raise NO levels. It's a long story, my BP started going up for reasons I won't go into here, my NO had tested low some years ago, I started taking l-citrulline and drinking the juice from canned beets and eating them as well, and my BP has gone down. But I'm definitely interested in increasing the benefit from workouts. I'm so limited in what I can do, being able to get more benefit from a workout using bands or whatever I had to do would be great! :thumbsup:
 

Hopeful2021

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@Mary
Yes.... Nitric oxide is so key to everything. I remember almost 8 years ago how I saw that raw beets were the best for blood pressure improvements on Dr Oz. As a cardiologist, he was astounded. Most beer root powder is made from cooked. Have you tried raw to compare?
I have purchased beet root powder but years go by before I try it. I'm keto so all that glucose is tricky. I do have a jar which I've been considering experimenting with.
yes - L-Citrulline is a big booster. I loved experimenting with aminos.
that video link is also their podcast so you can just listen too. I've gotten about 4 people into Kaatsu and many of my friends are into it independently and then we laugh about how we didn't know the other likes it.
it's a great way to build muscle too, not just NO. And the healing stories are crazy too....!!!
I actually haven't done it in awhile. I do so much everyday... sometimes I rebel and don't do anything but the basics to keep myself going.
I've tried so many things and spend hours a day .... I'm often very disappointed in my lack of curing myself. I am thankful for having many of my abilities back, such as driving, but I'm still really careful with my neck.
Unfortunately, that's not a "limb" and one certainly can't do Kaatsu on that body part.
Do you have friends or family who would do Kaatsu with you? In the beginning, I still would only do it if someone was around. When you see videos of people comparing a Kaatsu limb versus the other with no band, it's creepy/fascinating/ a trip later when it's you.
As many things as I experiment with on myself, one would think I can be brave. I'm so not brave, so I don't look at myself or my skin. I just set a timer, have my plan and then wait even a few minutes to look after I'm done.
I do lots of PEMF and I can get very veinous from that. It also supposedly increases nitro oxide. And often if I look too long at my newly popping veins, I can't open myself up to do my PEMF therapy for quite sometime-- which defeats the purpose of trying to get 100 percent better.
I'm more than five years into trying to biohack my way to 100 percent and what I've learned is just how treacherous and how deeply this disease affected me.
I've yet to do a serious month or more long program of Kaatsu... but it's HGH and stem cell benefits have me "saving it" as likely one of my last ditch efforts.
I'm really intrigued to see if you shall pursue it, How it goes, and if you find it worthwhile.
I have a friend that uses Kaatsu bands and a neuroplasticity device to increase his muscle pumpAnd to increase his lean mass. I wasn't interested in truly pursuing muscle gains, but since this pandemic, the benefits are going to those with great metabolic health. So I'm considering doing both more and more. My hyper mobility is what gives me pause and like I said, I'm also not that brave/ a chicken. LOL - I could have picked the username chicken Lickin' ME....

it's really nice reading your replies and these posts. Thank you.
 

dannybex

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First thing I suggest, take a look at this website: http://heartfixer.com/AMRI-Nutrigenomics.htm and look at specifically the write ups on CBS, BHMT, MTHFR and very importantly for you are the NOS and SOD SNPS so look at those sections.

I would also look at material by Amy Yasko and Ben Lynch as they are probably the best methylation doctors and they have lots of online material about these SNPs.

For me when I learned I had these SNPs, I started methylfolate and molybdenum immediately as if you're like I was, my BH4 was very low, my ammonia was very high (can you smell it in your sweat after a workout? I could very strongly) my sulphates and sulphites were very high (causing anxiety and impaired sulfation pathways and brain fog) and depending on your lifestyle, you may be like me, very toxic with mercury, copper, cadmium and aluminum.
@drmullin30 @Hopeful2021

With all due sincere respect, I'd avoid 90% percent of the advice on the Heartfixer site, as it's both outdated and was mostly widely inaccurate in the first place. Some of us old timers found out the hard way, so I wouldn't anyone else to waste their precious energy and health -- and years -- following inaccurate info.

Just as one example, the heartfixer doc says that sulfate is bad (based on Yasko's misinterpretation of studies). SULFITE is bad. Sulfate is not only good, it's essential for healthy gut function and sulfation/transsulfuration.

Many here over the past 10 years have looked into Yasko's work and found it to be highly inaccurate. I'd recommend you use the search function on this site when looking for accurate info on these genetic snps. @alicec and @valentjn have posted many, many times talking about these inaccuracies, and about 5-6 years ago even Ben Lynch broke with Yasko on a lot of her advice, especially the notion that one should avoid sulfur/sulfate.

Best of luck.
 

Learner1

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@drmullin30 @Hopeful2021

With all due sincere respect, I'd avoid 90% percent of the advice on the Heartfixer site, as it's both outdated and was mostly widely inaccurate in the first place. Some of us old timers found out the hard way, so I wouldn't anyone else to waste their precious energy and health -- and years -- following inaccurate info.

Just as one example, the heartfixer doc says that sulfate is bad (based on Yasko's misinterpretation of studies). SULFITE is bad. Sulfate is not only good, it's essential for healthy gut function and sulfation/transsulfuration.

Many here over the past 10 years have looked into Yasko's work and found it to be highly inaccurate. I'd recommend you use the search function on this site when looking for accurate info on these genetic snps. @alicec and @valentjn have posted many, many times talking about these inaccuracies, and about 5-6 years ago even Ben Lynch broke with Yasko on a lot of her advice, especially the notion that one should avoid sulfur/sulfate.

Best of luck.
Hi @dannybex I respectfully disagree with your analysis. I too started learning with Yasko and Heartfixer because that's all there was at the time. I've found much of their info to be helpful. They gave me the lay of the land and gave me some working concepts that I've been able to supplement with more up to date knowledge.


FYI, you might find beets and beet juice helpful to raise NO levels.
This is very bad advice for someone who has acknowledged they have oxalate problems. Beets are very high in oxalates and can make matters worse., unfortunately.

Labs showed Adrenal fatigue, borderline prediabites, elevated liver enzymes, high cholesterol, candida, low vit D.

Tried two adrenal fatigue protocols, emdr, Epstein Barr protocol, and gut/candida diet and just ran a QEEG. All labs are back in range except neurotransmitters, cortisol, glycine. Low histamine. Started taking lithium orotate, helping a lot with anxiety.

Currently have low dopamine and very low norepinephrine and epinephrine.
You have SNPs that may indicate low BH4 which is needed for nitric oxide production. I agree with the advice above, that you may not have solved your folate issue - taking 5-MTHF can be helpful. You might want to read up on the Paul protocol, see attached. It discusses the use of folate, B12, vitamin C, and BH4 to reduce peroxynitrites which can damage mitochondria and increase fatigue.

I've taken hydrocortisone for 4 years, to supplement what my adrenals weren't making. I started at 25 mg divided into a 10 mg dose early morning, another 10 mg late morning, and then another 5 mg mid-afternoon. I then started reducing down to 20 mg divided into two 10 mg doses, then last fall, I realized I was gaining weight around the middle and I had three tests that showed I had more normal cortisol levels, so I was able to cut back to 2.5 mg a day which I take around 10:30 in the morning these days.

Glycine is an essential cofactor for glutathione production. Many people take NAC to boost production of glutathione, without realizing they also need the glycine. Taking it before bed can calm your system for better sleep.

You might try doing a Great Plains OAT test, which would help show if you have an oxalate problem in addition to a candida problem, they are linked many times, and both related to previous antibiotic use. Dealing with the oxalates will reduce the candida problem. this would include a low oxalate diet as mentioned above.

You might also want to invest in some nitric oxide test strips, like the ones from Humann or Berkeley life. BH4 is necessary to convert arginine into nitric oxide so if you don't have BH4, you won't be able to convert. Citraline and ornithine both can be helpful later on in the urea cycle, and in the past, adding one or both, greatly help my sleep. The options to take BH4 are: by the research chemical, take Ecological Formulas pteridin-4 (which must be kept cold, is very low dose, and usually out of stock everywhere) or take an orphan drug called Kuvan. It's actually cheapest to buy Kuvan if your insurance won't approve it, but if you've been taking tyrosine, it's likely your phenylalanine will show high on an amino acid test, and you might be able to get your insurance to approve it. I figured out that I only need 20 mg a day which runs about $300 a month retail, and not the expensive $3,000 a month that the PKU patients need, so it wasn't odious for my insurance to approve. There are lots of articles on the benefits of BH4 in exercise intolerance, and a couple of clinical trials going on.

If you need to produce more nitric oxide, Berkeley life has a good product that you can order online. It does contain a little bit of beetroot but they claim they've tested it and shown that its not too high in oxalates.

Oxalates will create a lot of oxidative stress, deplete all antioxidants, and encourage candida, and raise liver enzymes. So the OAT test would help you understand what your situation is there.

Best of luck:hug:
 

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Hopeful2021

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Hi @dannybex I respectfully disagree with your analysis. I too started learning with Yasko and Heartfixer because that's all there was at the time. I've found much of their info to be helpful. They gave me the lay of the land and gave me some working concepts that I've been able to supplement with more up to date knowledge.



This is very bad advice for someone who has acknowledged they have oxalate problems. Beets are very high in oxalates and can make matters worse., unfortunately.


You have SNPs that may indicate low BH4 which is needed for nitric oxide production. I agree with the advice above, that you may not have solved your folate issue - taking 5-MTHF can be helpful. You might want to read up on the Paul protocol, see attached. It discusses the use of folate, B12, vitamin C, and BH4 to reduce peroxynitrites which can damage mitochondria and increase fatigue.

I've taken hydrocortisone for 4 years, to supplement what my adrenals weren't making. I started at 25 mg divided into a 10 mg dose early morning, another 10 mg late morning, and then another 5 mg mid-afternoon. I then started reducing down to 20 mg divided into two 10 mg doses, then last fall, I realized I was gaining weight around the middle and I had three tests that showed I had more normal cortisol levels, so I was able to cut back to 2.5 mg a day which I take around 10:30 in the morning these days.

Glycine is an essential cofactor for glutathione production. Many people take NAC to boost production of glutathione, without realizing they also need the glycine. Taking it before bed can calm your system for better sleep.

You might try doing a Great Plains OAT test, which would help show if you have an oxalate problem in addition to a candida problem, they are linked many times, and both related to previous antibiotic use. Dealing with the oxalates will reduce the candida problem. this would include a low oxalate diet as mentioned above.

You might also want to invest in some nitric oxide test strips, like the ones from Humann or Berkeley life. BH4 is necessary to convert arginine into nitric oxide so if you don't have BH4, you won't be able to convert. Citraline and ornithine both can be helpful later on in the urea cycle, and in the past, adding one or both, greatly help my sleep. The options to take BH4 are: by the research chemical, take Ecological Formulas pteridin-4 (which must be kept cold, is very low dose, and usually out of stock everywhere) or take an orphan drug called Kuvan. It's actually cheapest to buy Kuvan if your insurance won't approve it, but if you've been taking tyrosine, it's likely your phenylalanine will show high on an amino acid test, and you might be able to get your insurance to approve it. I figured out that I only need 20 mg a day which runs about $300 a month retail, and not the expensive $3,000 a month that the PKU patients need, so it wasn't odious for my insurance to approve. There are lots of articles on the benefits of BH4 in exercise intolerance, and a couple of clinical trials going on.

If you need to produce more nitric oxide, Berkeley life has a good product that you can order online. It does contain a little bit of beetroot but they claim they've tested it and shown that its not too high in oxalates.

Oxalates will create a lot of oxidative stress, deplete all antioxidants, and encourage candida, and raise liver enzymes. So the OAT test would help you understand what your situation is there.

Best of luck:hug:
Fascinating that a person can order strips and test for nitric oxide. Thanks
 

Hopeful2021

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Fascinating that a person can order strips and test for nitric oxide. Thanks
@dennybex I'm in a bubble. I had no idea you could home test Nitric Oxide. I just ordered some and I can't wait to be testing.
I also really love L-Ornithine. It works better for me for that fast surge of energy. I used to stack it with ketone esters and have great bursts of energy. Some of the best days of my life with this disease.
****
****do you also take those two aminos and have you tested your NO levels with strips and found an increase?
I was just writing in this forum about Nitric Oxide levels and Kaatsu training to another member .... I wish it was easy for me to find that so I could share with her this info.
I'm more excited than ever now to consider the planning of my month of Kaatsu training. I really appreciate measuring things.
Do you have some interesting test /experiments...? Maybe I can also attempt to reproduce them....?
I try to keep myself and cells respirating with my level of movement (often its zero... well blinking and breathing) but sometimes I'm "active." But to that end, I have a PEMF therapy device that I use in phases. Sometimes I get veinous which I assume means now I have more nitric oxide. I'm most looking forward to testing this hypothesis. Often I do not get veinous ... so again testing will shed something light.
I do have a zero CAC score so in general my cardiac health is great. As an aside, I had horrible PEM and would track it with heart rate monitors and HRV apps. It was so awful that I often thought the data displayed must be a software bug for surely I'd be dead or about ready to die. Coincidentally though a few months later, I got my PEMF machine. The immediate benefits enabled me to start walking. Much later when I thought about HRV, my numbers were like a normal persons. Of course, I'd still have crashes. But my heart numbers changed significantly and it was easy for me to write it all off as it was a software bug. Only later did I learn about the HRV numbers of crashes and ME. My approach to helping myself out of this disease or into some semblance of life with it is to break it down into sections. Cardiovascular health. Brain. Gut health. Nervous system. Neuro-muscular. Hormonal. Sleep. Etc.
To fix all is impossible and so I just plod along pebble by pebble. Often there's an avalanche of rocks, but there's often movable pebbles in that rock slide.

I'm new here. So it's nice getting to read your posts. Thanks again for that strip info. As I did with measuring ketones, it's often fun and exciting. So I know I'll have lots of fun using those strips. Again, any tips will be most appreciated. Thks
 

dannybex

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Hi @dannybex I respectfully disagree with your analysis. I too started learning with Yasko and Heartfixer because that's all there was at the time. I've found much of their info to be helpful. They gave me the lay of the land and gave me some working concepts that I've been able to supplement with more up to date knowledge.
I did the same thing, along with many others -- went to the Heartfixer site, and got the Yasko methylation analysis, only to find out several years later that maybe not all of it -- but much of it was based on her faulty interpretation of studies, etc., -- things that she refused to acknowledge, perhaps due to the possibility of legal action, who knows. But 10-11-12 years ago, that was all there was out there. She kind of cornered the market for a good 5+ years.

Nevertheless, that cost me a LOT in terms of my health, not to mention wasted years, dollars I didn't have, etc..

So I'm just trying warn others so the same things don't happen to them, and to point out that there is now, as you say, 'more up to date knowledge'.

Anyway, I'm glad to hear it didn't hurt you as it did myself and others.
 
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@Learner1 WOW thanks so much for taking the time to write this up! Appreciate everyone’s help here! All very interesting stuff, I used to notice I was a lot more vascular. Now as these problems started not so much. The nitric oxide like you also help me sleep I noticed. I’ll order the strips. How often do you test?

Is an oxalate problem possibly indicative of low dopamine, noriepi, and epi? Or could that be a different issue or SNP?

Ive been taking the b complex below- 2 tabs a day and Thorne Molybedum 1 tab, 10 mg of lithium orotate split in 2 doses.

Super B-Complex – Methylated Sustained https://www.amazon.com/dp/B01787EPEE/ref=cm_sw_r_cp_api_i_F-I-Eb5QRYCBE

Thx!!
 

Mary

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Have you tried raw to compare?
Hi @Hopeful2021 - I haven't tried raw beets to compare - they're more work and my energy and stamina are pretty limited unfortunately. I'm sure they're more nutritious than canned, but I do what I can (pun intended! ;))
I'm keto so all that glucose is tricky.
You're right - beets would be a lot of sugar!
Do you have friends or family who would do Kaatsu with you? In the beginning, I still would only do it if someone was around. When you see videos of people comparing a Kaatsu limb versus the other with no band, it's creepy/fascinating/ a trip later when it's you.
I don't have anyone to do it with. tbh, I'm not even sure what's involved with Kaatsu. I need to watch the video. It just sounded good, being able to increase the impact of a workout. I can't even do a workout right now due to lack of stamina. I crash too easily, though am working on some things, hoping to be able to increase my energy/ activity envelope.
I do lots of PEMF and I can get very veinous from that. It also supposedly increases nitro oxide.
How do you do the PEMF? Is there a device of some type you use?
My hyper mobility is what gives me pause and like I said, I'm also not that brave/ a chicken. LOL
I wouldn't call you a chicken! I don't have hyper mobility but I can imagine it creates its own risks when doing exercise - you have to know what you're doing and being cautious I think is the better part of valor here! It wouldn't be smart to throw caution to the wind and risk serious injury!