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Wanting to get started on simplified protocol while awaiting genetic testing results

Messages
28
Location
Maumee, Ohio
Hi all, I'm a first time poster here. I'm a 44 year old male who has been suffering from Lyme disease and other chronic infections for at least 9 years, and from auto-immune thyroid disease and adrenal fatigue for at least that long (diagnosed with Hashimotos in 2004 and Graves with eye disease in 2009). Until recently I was working with a nutritionist/bio-chemist who was trying to help me detox the metals that showed up on the hair testing that he prefers. I stopped working with him when I began to learn about methylation and he expressed very little interest in it or in adjusting his supplement recommendations based on what I have been learning. Specifically I've learned the following:
  • MTHFR heterozygous for C677T and A1298C
  • Low/normal homocysteine
  • Excreting excessive urinary sulfate
  • Elevated ammonia – UAA
  • Elevated taurine - UAA
So, based on the above, my question is whether it would be safe/OK to start on the simplified protocol while I await my Yasko genetic test results? I already started on the Thorne Basic Nutrients V since it seems to be a very good multi anyway. I'm up to 2 in the AM and one in the PM.
One more thing to note is that I take 100mcg of T4 (Tirosint) and 15mcg of slow-release T3 per day.
Thanks in advance for any advice or suggestions.
Jason
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi Jason,

Welcome to the forum. You will probably find some good suggestions here as many of us have worked with methylation and there are a few "experts" here.

Best wishes,
Sushi
 

place

Be Strong!
Messages
341
Location
US
Hey Jason,
There is a ton of information on this site, I am working through the process too. Best thing to do is go through the basics that are "pinned" up on top of the board. I still have to read through it after 4 months of reading it. Each time I gain more understanding.

It is a lot of trial and error. What works for one may not work for another. Many people, myself included, have a thread that covers there journey with the protocol. They are helpful because you can see a time line and the problems and solutions they come up with. But you have to be your own lab rat and keep plugging in factors. I have noticed a lot of people who don't do well on this protocol don't problem solve there issues that develop along the way.

Best advice, take a ton of potassium. It helps with all kinds of symptoms. I take up to 3500 a day. The daily recommended amount is 4800.

Best of luck!
 

richvank

Senior Member
Messages
2,732
Hi all, I'm a first time poster here. I'm a 44 year old male who has been suffering from Lyme disease and other chronic infections for at least 9 years, and from auto-immune thyroid disease and adrenal fatigue for at least that long (diagnosed with Hashimotos in 2004 and Graves with eye disease in 2009). Until recently I was working with a nutritionist/bio-chemist who was trying to help me detox the metals that showed up on the hair testing that he prefers. I stopped working with him when I began to learn about methylation and he expressed very little interest in it or in adjusting his supplement recommendations based on what I have been learning. Specifically I've learned the following:
  • MTHFR heterozygous for C677T and A1298C
  • Low/normal homocysteine
  • Excreting excessive urinary sulfate
  • Elevated ammonia – UAA
  • Elevated taurine - UAA
So, based on the above, my question is whether it would be safe/OK to start on the simplified protocol while I await my Yasko genetic test results? I already started on the Thorne Basic Nutrients V since it seems to be a very good multi anyway. I'm up to 2 in the AM and one in the PM.
One more thing to note is that I take 100mcg of T4 (Tirosint) and 15mcg of slow-release T3 per day.
Thanks in advance for any advice or suggestions.
Jason

Hi, Jason.

I, too, want to welcome you to these forums.
It does sound as though you are a candidate for a methylation type protocol. The Thorne supplement has the active folates in it, as well as the vitamins and essential minerals. If you add some sublingual B12, such as the Perque B12 Guard lozenges, you should start to experience some changes. I do recommend working with a physician while on this type of protocol.

Best regards,
Rich
 
Messages
28
Location
Maumee, Ohio
Thanks to all for the warm welcome.

Place, I have read your entire thread with interest and noted your experience with potassium. I test very deficient in K, by hair, but when I tried to supplement even 500mgs per day in divided doses I had lots of energy but I also couldn't sleep and started dropping weight rapidly which I don't need to do at 5"7 135 lbs (I've dropped from 160+ over the past few years). My nutritionist said that it was a detox reaction and to pull back and reintroduce the K slowly but he said that I should be able to take a lot more of it. I also cut my thyroid meds back (too far, now hypoT) to give myself some headroom to start back on the K and B12. I believe that we actually induced the K deficiency, and folate and b12 as well, because we weren't considering my MTHFR status while he was putting me on high doses of NAC and L-glutamine and not looking as sulfuration issues at all. The last few days I've increased my K back up quite a bit, not quite 1000mgs/day yet, and I've been juicing veggies almost daily for added K. What form of K have you found that provides the 1000s of mgs - everything that I have seen is 99mg/cap so that is a lot of caps.

Undetermined, I'm going to catch up on your thread tonight. I tend to being hyper-sensitive to meds, foods, allergens, smells, sounds, and bright lights, much worse now than when I was younger, although things seem to have improved somewhat at times. Food is my worst issue now with my gut being one of my most consistent problem areas. So your advice to go low and slow is well taken. I usually press ahead and shock myself first however because that seems to be more my way :). Even so, I always exercise much more caution than any doctor that I have ever seen.

Hi Rich.Thanks much for the response and advice. I was already using Pure Encapsulation's B-12 which also has the active folate in it as well as methylB12. I've continued to take it along with the Thorne as I scale up on the latter. I've also worked up to 2000mcg of SL methylB12 and intended to switch over to the Jarrow 5000mcg SL that Fredd prefers. I note that the Perque B12 Guard lozenges are hydroxyB12. I see on the Yahoo Yasko group that you are considering changes in your Simplifed protocol that include switching to the Thorne V (the reason I'm on it) and from recommending hydroxyb12 to methylb12. Is there something in the limited data that I posted above that inclines you to recommend hydroxyb12 to me? I've read what Fredd thinks about the effectiveness of hydroxyb12 and, like many others I've seen posting here, I'm sort of lost as to how to proceed with choosing protocols and supps. You and he seem to be converging on the issue of which kind of B12 to recommend but if I should go slower for some reason I would like to understand.

Thanks again everyone.

Jason
 
Messages
28
Location
Maumee, Ohio
One more, is it necessary to get the methylation testing from Health Diagnostics if I have OAT and UAA tests already? If so, am I correct that I have to have my MD fax an order to them in the NL?

Thanks,

Jason
 
Messages
28
Location
Maumee, Ohio
Hi, Jason.

I, too, want to welcome you to these forums.
It does sound as though you are a candidate for a methylation type protocol. The Thorne supplement has the active folates in it, as well as the vitamins and essential minerals. If you add some sublingual B12, such as the Perque B12 Guard lozenges, you should start to experience some changes. I do recommend working with a physician while on this type of protocol.

Best regards,
Rich

Hi Rich, I have been noticing much better and consistent energy with the Thorne MV, pretty much without any additional B12 except for using some 1000mcg MB12 lozenges that I have. That seemed to be working pretty well except that for the past few nights, after going up on the Thorne to 3 caps in the AM and 2 in the PM, I'm not sleeping much anymore. I'm also experiencing lots of eye twitches.

I have so many questions and lots of functional lab testing (e.g., OAT, UAA, comp stool analysis, and a bunch more labs results coming from Great Plains Labs this week or next). Could I share some of these labs with you for some input. I'm trying to learn this stuff but the more I read the more lost I seem to become - the B2 thread that I've been reading really had me confused now.

Thanks,

Jason
 

richvank

Senior Member
Messages
2,732
Hi, Jason.

I'm glad to hear that you are experiencing improvements. It's O.K. to back off on the dosages if the symptoms get intolerable. I do recommend working with a physician on this type of protocol.

If you send me your test data or post them here, I will try to give you some comments. My email address is richvank at aol dot com. It may take me a while to do it, though. I have a backlog of cases, and I'm going to have arthroscopic surgery (not a replacement) on my knee next week, and that may slow me down for a while.

Best regards,

Rich
 
Messages
64
Hey Jason,
There is a ton of information on this site, I am working through the process too. Best thing to do is go through the basics that are "pinned" up on top of the board. I still have to read through it after 4 months of reading it. Each time I gain more understanding.

It is a lot of trial and error. What works for one may not work for another. Many people, myself included, have a thread that covers there journey with the protocol. They are helpful because you can see a time line and the problems and solutions they come up with. But you have to be your own lab rat and keep plugging in factors. I have noticed a lot of people who don't do well on this protocol don't problem solve there issues that develop along the way.

Best advice, take a ton of potassium. It helps with all kinds of symptoms. I take up to 3500 a day. The daily recommended amount is 4800.

Best of luck!

Hi Place,

I think Potassium gas given me really bad diarrhea and bloating. I had no idea that it was potassium (only 99mg a day!) and have been walking around with it for two weeks. I thought it was the B2 initially. All the other stuff I'm fine with in large doses, but I think potassium really made me ill. I'm still experimenting with eliminating and reintroducing B2, so if I'm wrong I will post, but for now I'm betting on potassium.

Another thing I wanted to mention has to do with the large Methyl B12 pill form Jarrow that dissolves in your mouth quickly. I saw your post somewhere, can´t find it. You may have tried this already, but if not just wanted to mention since it really works for me. I split the pill in halves and take them both at the same time, putting them as far as i can towards the cheek, under the lower lip. This way it takes the pill ages to dissolve and it barely bothers me. Hope this helps.
 

place

Be Strong!
Messages
341
Location
US
Cureminded, Ahgh! Why did I not think about splitting the pills! Brilliant! Thanks! Also, I have had a bit of the bloats too, and I have narrowed it down to wheat grass and or d ribose. Tomorrow, I think I will skip the wheat grass and see.

I am hoping to purchase one of the potassium meters. I would really like to have some form of measurement. I have had too put the purchase off until next month but I may get it sooner. One thing I don't struggle with is any of the GI symptoms, I have food allergies, but not the IBS or other issues.

Is this a common symptom for you without the help of the potassium?
 
Messages
28
Location
Maumee, Ohio
Argh, lost a big post.

Rich, thanks much for offering to help me. I hope that you are recovering well from your knee surgery. I'm going to have to work on reproducing all of the lab values that I had already typed in before my PC rebooted itself after updates. I'll do that tomorrow but I wanted to respond here in the meantime.

Jason

Hi, Jason.

I'm glad to hear that you are experiencing improvements. It's O.K. to back off on the dosages if the symptoms get intolerable. I do recommend working with a physician on this type of protocol.

If you send me your test data or post them here, I will try to give you some comments. My email address is richvank at aol dot com. It may take me a while to do it, though. I have a backlog of cases, and I'm going to have arthroscopic surgery (not a replacement) on my knee next week, and that may slow me down for a while.

Best regards,

Rich
 
Messages
64
Cureminded, Ahgh! Why did I not think about splitting the pills! Brilliant! Thanks! Also, I have had a bit of the bloats too, and I have narrowed it down to wheat grass and or d ribose. Tomorrow, I think I will skip the wheat grass and see.

I am hoping to purchase one of the potassium meters. I would really like to have some form of measurement. I have had too put the purchase off until next month but I may get it sooner. One thing I don't struggle with is any of the GI symptoms, I have food allergies, but not the IBS or other issues.

Is this a common symptom for you without the help of the potassium?

Hi Place,

The funny thing is that I am quite prone to IBS (mostly stress ralated, no allergies as far as I'm aware), but I was surprised how well I was doing after I started supplementing. I think I was less stressed, thus less IBS. However the symptoms that were caused by potassium were really bad, nut just a bit of bloating and an occasional liquid stool, but bad diarrhea, nausea and stomach aches. At one point I thought it was a food poisoning, but that wouldn´t have lasted for two weeks and would have been even worse. Anyway the clue came when I realized it was less on a day I left potassium out since I was doubting that it was needed at all and got worse on the next day when I restarted it. I am planning to restart B2 today, see if the symptoms come back. If not, it was potassium.

Didn´t know there were potassium meters out there. Good to know. I haven´t started taking D ribose yet, it´s in the mail. What do you take wheat grass for?

Glad that splitting the pill helped.

Cheers
 
Messages
64
Argh, lost a big post.

Rich, thanks much for offering to help me. I hope that you are recovering well from your knee surgery. I'm going to have to work on reproducing all of the lab values that I had already typed in before my PC rebooted itself after updates. I'll do that tomorrow but I wanted to respond here in the meantime.

Jason

Hi Jason,

Loosing all that you typed really sucks. Maybe you could scan and attach to limit the workload?

With regards to the hydroxy B12, I think it's an individual thing. It seems that taking the active types is the safest option. However, I was already taking the hydroxy type and apparently it works fine for me in conujnction with the active types. I am wondering if the hydroxy B12 is converted into any other type of B12 by the body that might be useful, but I have no idea.

Cheers
 
Messages
28
Location
Maumee, Ohio
OK, trying again. Here are my meds:
  • 112 mcg of Tirosint thyroid (T4, like Synthroid, but hypoallergenic)
  • 15-20 mcg of slow release T3 thyroid split into 5x dosing throughout day and night to more closely mimic the body's actual production, and to limit stress on the adrenals
  • About to add LDN 1.5mg
And supps:
  • 5mg of SL pregnenolone to support adrenals and, hopefully, generate some testosterone since mine is low to go along with my low thyroid
  • 1 Tbsp of Carlson's CLO upon rising and again before dinner
  • 1/4 tsp of Himalayan sea salt in water in the AM and sometimes in the PM, for adrenal support - adrenals have tested low normal via saliva for years
  • 3+1 caps of the Thorne V (going to try to go back to 2+2 because I haven't felt great on 3+1)
  • 2-3 caps of potassium citrate or 1-2 caps of potassium gluconate, 1-3x/day, depending on need - both are 99mg but the latter seems to be stronger - tested very deficient in hair
  • 1 cap of Pure Encapsulations mag glycinate in the AM and sometimes in the PM - Mg also supplemented in the Thorne, and I use mag oil transdermally, and I take mag chloride baths - tested very deficient in hair
  • Mo-zyme 50mgs, 2 tabs, 2x/day - molybdenum, to help detox excess ammonia from presumed sulfuration issue - tested deficient in hair
  • Pantothenic acid (B5) 500mg, one in the AM, one with lunch and one with dinner - again, supposedly very good for adrenal support
  • 5-HTP 100mg, 1-2/night
I was taking many more individual vits and minerals before I started taking the Thorne because I was missing a lot of what's in it - like manganese which I also tested low in via hair. After reading one of the lengthy threads on vitamin B2 I'm wondering whether I need to add some additional riboflavin and some manganese, until I can get ramped up more on the Thorne. I'm not really clear on this, but it seems like with my eyes twitching, itching, and dry that B2 might be worth a try.

I've added a 300mcg melatonin supp lately to see if it helps me sleep and it seems to, especially along side the 5-HTP. I'm wondering whether I should be trying GABA too.

As I write this today, my biggest issues are muscle and ligament pain and fatigue, especially in my hips, legs, and shoulders (duration of 15 months now), lower intestinal gas and bloating (LL quad pain), RL quad pain and discomfort (liver and perhaps GB), eyes twitching and restricted range of motion of eyes (thyroid eye disease and or vitamin deficiency), brain fog and thick-headedness (especially pronounced in the AM and when I am flaring, like now), daily transient headaches and slumps in energy although that seemed to be improving on the Thorne, at first. Also, although it doesn't bother me, per se, my fingernails have had vertical ridges for quite a while, but now they also have horizontal ridges and spooning which indicate all kinds of nutritional deficiencies and past stresses from toxins and malnutrition.

I'm using the Upload a File feature to see what it looks like when I attach some labs to this thread. Rich, or anyone reading, if you would rather me reproduce the lab data here I'm happy to do that too. Thanks in advance for any advice.

Jason
 

Attachments

  • GPL Copper Zinc with Gluta 6_25_12.pdf
    402.4 KB · Views: 14
  • GPL Urine Porphyrins 6_25_12.pdf
    889.9 KB · Views: 12
  • GPL UAA with comments.pdf
    309 KB · Views: 23
  • Metametrix OA 7_11 with comments.pdf
    2.6 MB · Views: 14