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Rachel--24

Omg...i Might Be On To Something

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My dr called yesterday, my dh biopsy came back completely positve for DH. I am an diagnosed celiac now and wont have to to an scope or go back on gluten. I am so happy for that.

Happy thanksgiving everyone.

Glad you got the diagnosis withoug having to do the scope.

Happy Thanksgiving everyone!

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Jin,

Sorry to hear things have been stressful in your household again.

I do hope you have a good holiday weekend.

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Rinne...its good to know that you're doing well...hope you have a great Thanksgiving!!

Sounds like you learned that running a restaurant wasnt your calling......I think its probably because you're suppossed to be a writer. :P:D

Anyways, good to "see" you. :)

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My dr called yesterday, my dh biopsy came back completely positve for DH. I am an diagnosed celiac now and wont have to to an scope or go back on gluten. I am so happy for that.

Great news Paula...so now there is no more questioning it. A load off of your mind I'm sure!! :)

I didnt know you had the skin biopsy but I'm really glad that you did and that it gave you an answer!!

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Jin,

Sorry to hear things have been stressful in your household again.

I do hope you have a good holiday weekend.

Ditto Jin....sorry things have been rough again...and that the power got shut off. :(

Hope things are better today and that you enjoy the holiday! :)

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Rachel,

I just remembered that I am taking yucca root for the blocked pathways (tested by Dr. E with ART); I'm curious if you have come across that and what it unblocks, since I didn't get much of an explanation about it.

Sherry

I dont think that any one supplement opens up the pathway...so I havent read anything that would indicate that yucca unblocks anything. Its more of a support that is used to aid in detoxification. There are lots of supplements that are used to help regain proper function of the methylation cycle....and to support it.

It seems like most people take small amounts of all of the supports that they need because they are focusing on the entire pathway....and not just one area. Also, on the board I'm on all of the people have multiple mutations....so there is alot of support needed in order to get the pathway up and running. These are mostly parents of autistic children.....but many are treating themselves as well.....and there are also those who have Lyme, etc. Lots of the kids also test positive for Lyme......but the methylation cycle is where most of the focus is over there.

It seems like many of them dont ever resolve the food intolerances/gut issues no matter what they do with their diet....but when the methylation cycle is fully supported these issues improve or resolve themselves. I'm hoping that this will be my experience as well <fingers crossed>.

Yucca is used mostly to aid in the detoxification of ammonia. If ammonia is a problem (certain mutations in the cycle can cause this) then a very low protein diet is part of the treatment for getting the ammonia under control before addressing other areas of the pathway. For people with those mutations (CBS C699T is one that causes ammonia to become elevated) and who are dealing with trying to bring the ammonia levels down....the yucca is used to help with any protein that is in a meal. They sprinkle it on the food and it supports the system as far as eliminating the ammonia.

The CBS mutation is the one which overrides any other problems in the pathway. It needs to be addressed first in order for anything else to be effective. It basically depletes the entire pathway of its intermediates. The enzyme is overactive and breaking down homocysteine very rapidly. It causes everything in the pathway to be used up very quickly....it causes ammonia levels to rise....that in turn depletes BH4...which causes problems in other areas. Its a situation where one problem leads to another....but with the CBS mutation lots of problems with the pathway occur as a result of increased enzyme function.

From discussions with other board members (and lots of reading) it could be that I have this mutation....but there is no way to be sure until the results are in. Anyways, if I DID have that CBS issue.....anything that I try to do right now to improve methylation would not have any benefit. So I'm not really doing anything until I know what I'm dealing with.

Some of the supplements that my doctor wanted me to start on would still be ok....but I'm holding off on some of them. Curcumin (or tumeric) is one that he wanted me to start on....however, its a methyl donor and depending on my genetics I might not tolerate very many methyl donors. If I try it....it will be in very low dose.

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Paula, those that also have DH often are very very sensitive to gluten. They can even have problems with going shopping in the bread department or just having gluten, like bread or cookies, around in the house. Normal celiacs usually are not that sensitive. I even reacted to the smell of buns heated up in the microwave (well, it was very close to my nose).

I have bread around, but only on one cutting board and I do not cut it or touch it.

I used to bake but had to give up baking gluten bread, my whole upper part of the torso burned like on fire (small fire, but fire). Went away after I discontinued baking and I gave away all wheat flour.

Did not manage to get a DH diagnosis but it was taken long after the baking and not during an outbreak (I have some small water blisters sometimes and some small burning sometimes, but not often)

nora

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Happy Thanksgiving to all!!!

Nice to see Jin again, although so sorry for the rough times!

Also very nice to see Rinne!!!

I've been doing well for a couple of weeks now. THe bouts of pancreatitis seem to be over although I'm still having to be careful what I eat and the doctor said not to add any fat until at least Christmas. I still can't eat much, but I'm slowly increasing.

Rachel...there was a procedure on the list of stuff they did during my surgery that I'd never heard of. I asked my doctor what that was...turns out my INTESTINES WERE TOO FLOPPY, so he did a procedure to tack it down! So, looks like I have (or had) alien baby junior, lol! :lol:

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I thought i had posted i was getting an biopsy done. It was done when i said i woke up with the dh from redbridge and fritos. I wanted to make sure this time, since last time i had the biopsy they had just said they thought but were not sure, we had an idiot for an dermatologist then..

paula

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I dont think that any one supplement opens up the pathway...so I havent read anything that would indicate that yucca unblocks anything. Its more of a support that is used to aid in detoxification. There are lots of supplements that are used to help regain proper function of the methylation cycle....and to support it.

It seems like most people take small amounts of all of the supports that they need because they are focusing on the entire pathway....and not just one area. Also, on the board I'm on all of the people have multiple mutations....so there is alot of support needed in order to get the pathway up and running. These are mostly parents of autistic children.....but many are treating themselves as well.....and there are also those who have Lyme, etc. Lots of the kids also test positive for Lyme......but the methylation cycle is where most of the focus is over there.

It seems like many of them dont ever resolve the food intolerances/gut issues no matter what they do with their diet....but when the methylation cycle is fully supported these issues improve or resolve themselves. I'm hoping that this will be my experience as well <fingers crossed>.

Yucca is used mostly to aid in the detoxification of ammonia. If ammonia is a problem (certain mutations in the cycle can cause this) then a very low protein diet is part of the treatment for getting the ammonia under control before addressing other areas of the pathway. For people with those mutations (CBS C699T is one that causes ammonia to become elevated) and who are dealing with trying to bring the ammonia levels down....the yucca is used to help with any protein that is in a meal. They sprinkle it on the food and it supports the system as far as eliminating the ammonia.

The CBS mutation is the one which overrides any other problems in the pathway. It needs to be addressed first in order for anything else to be effective. It basically depletes the entire pathway of its intermediates. The enzyme is overactive and breaking down homocysteine very rapidly. It causes everything in the pathway to be used up very quickly....it causes ammonia levels to rise....that in turn depletes BH4...which causes problems in other areas. Its a situation where one problem leads to another....but with the CBS mutation lots of problems with the pathway occur as a result of increased enzyme function.

From discussions with other board members (and lots of reading) it could be that I have this mutation....but there is no way to be sure until the results are in. Anyways, if I DID have that CBS issue.....anything that I try to do right now to improve methylation would not have any benefit. So I'm not really doing anything until I know what I'm dealing with.

Some of the supplements that my doctor wanted me to start on would still be ok....but I'm holding off on some of them. Curcumin (or tumeric) is one that he wanted me to start on....however, its a methyl donor and depending on my genetics I might not tolerate very many methyl donors. If I try it....it will be in very low dose.

Rachel, thanks for this explanation. My ammonia was either high or low, I need to check that again. Dr. E borrowed someone's kit for the enzyme pathways and methylation and tested on ART. There was some blockage but I don't remember exactly what she said. She said that she was not familiar with this area much so she couldn't really interpret it. But the yucca tested as fixing the problem and opening things up.

I am following what you post with a lot of interest. My food sensitivities are not a huge problem in terms of reacting to everything like I used to. Of course I may have naturally eliminated a number of them with SCD. On SCD, the only things I am clearly reacting to are eggplant and squash, and possibly tomato. Oh, coconut is a problem usually too.

In the stuff you are reading is there any way to guess at the mutations based on symptoms?

Unfortunately pursuing this area looks to be very expensive, as is the bionic 880 treatment. Can you explain again why it is so long to get the results of the genetic testing?

Sherry

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I've been doing well for a couple of weeks now. THe bouts of pancreatitis seem to be over although I'm still having to be careful what I eat and the doctor said not to add any fat until at least Christmas. I still can't eat much, but I'm slowly increasing.

Rachel...there was a procedure on the list of stuff they did during my surgery that I'd never heard of. I asked my doctor what that was...turns out my INTESTINES WERE TOO FLOPPY, so he did a procedure to tack it down! So, looks like I have (or had) alien baby junior, lol! :lol:

Donna, this is fantastic news! I bet you are losing weight with all of this challenge, too. Hope you can enjoy your holiday dinners a little at least.

ROFL about floppy intestines! What a scientific term!!! :o Now I wonder what the downside is of having a too floppy intestine???

Sherry

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Rachel, just looked at my Doctors Data from July. Ammonia is very low. 7940uM (ref: 12000-56000). Actually that is low, arginine is low, and citrulline is right in the middle of normal. So this doesn't fit at all with ammonia detox problems.

So not sure what the yucca may be helping. Is there any of the mutations associated with low ammonia? I tried to do a search and didn't find it.

Paula, so glad for your clear diagnosis. Wish I could get one without a long term gluten challenge.

Jin glad to see you post, and hope you are able to get you WB and some further progress soon.

Sherry

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Hey everyone!

Happy Thanksgiving!

I have been super busy and seemingly able to keep up. We are moving the office where I work so that has been a lot of work. So far...I haven't crashed!

Jin,

Sorry to hear about the tough times. I hope you figure out a way to move out on your own soon.

Donna,

Glad you are feeling a bit better these days. What in the world is floppy intestines?

Rachel,

What is the link to the yahoo group you are on? I am very interested in learning more about this methylation stuff although it is very complicated. Gotta start somewhere though, right!

I think I still have some kind of methylation or detoxification issue. I went to the mountains with some friends and wasn't careful with my wine comsumption. What seems to happen is I can tolerate it at first but then it starts building up in my system and ended up making me very sick the next day. More sick than most people get.

It almost feels like detoxification of the alcohol shuts down after a certain point and then it builds up. Or maybe I was thinking it is the sulfites?

It's not that I want to go out and drink :P , but more so figure out this issue for I am sure it affects me in other ways, too. I wouldn't mind having a drink or two on occasion without repercussions! B)

I have the Yasko genetic book on my wish list on Amazon. I am hoping someone will give me a gift card for Chrismas because there are a ton of books i want to read.

Sherry,

I have gotten side tracked from SCD since this whole move thing. I find that my digestion is getting worse again and I plan on starting over with it when the move is over. My son does very well on it. He tested positive for Blastocystosis Hominis parasite and I thought that *maybe* after some treatment he might be able to tolerate more foods. Well, not so much - at least not yet. :( The teacher told my daughter the other day that he had a very bad day at school. This was the day after I allowed him to have a little bit of regular bread.

It causes him to go totally ADD and he couldn't concentrate at school all day that day. He didn't do any work and had to go to the "thinking chair" a lot. Poor guy! :P

So, he is back strict again. For me, my bloatedness is coming back. I am still doing he yogurt though and taking the kirkman's acidophilus.

Carla,

Are you still feeling good after your treatments?

Have you heard from Kassandra? Maybe she would benefit from your machine.....

Paula,

I remember you saying your broke out in a rash, but I didn't know you tested for DH.

Sorry and not sorry about the diagnosis. Sorry you are a confirmed celiac but glad that you have found some answers and maybe will be able to move forward with healing. Apparently redbridge is not so free from gluten?

Are you feeling a bit better emotionally this week? I sent you a pm a few days ago. Not sure if you got it.

Tomorrow is the final day of the "big move". Hopefully, things will get back to normal!

April

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Rachel, thanks for this explanation. My ammonia was either high or low, I need to check that again. Dr. E borrowed someone's kit for the enzyme pathways and methylation and tested on ART. There was some blockage but I don't remember exactly what she said. She said that she was not familiar with this area much so she couldn't really interpret it. But the yucca tested as fixing the problem and opening things up.

I'm pretty sure your ammonia was low. I remember looking at your results because that was when I was really wanting to start understanding what it all means. I dont think I had my own results yet at that time....so I was looking at yours and trying to interpret them. I wasnt familiar with any of it at the time so I didnt get very far with my "interpretation". :lol:

Unfortunately, the only tests that can identify where the problems are in the pathway are the genetic tests. ART and EAV cant get that specific. The problems with pathways always showed up in energetic testing for me....but noone I was seeing really knew much about the genetics part of it.....and I think thats why I've been at a standstill. Even though I'm feeling pretty good....my cycle is still very much blocked and it wouldnt take much of the wrong thing (chemicals, foods, etc.) to knock me down. I do get knocked down at times....but its just easier for me to get back up now. :)

I'm also looking at everything that I experience as being more related to the metabolic issues...and I think thats also helped me gain a better understanding about whats happening when I do get knocked down. I dont really look at it as being caused by metals...or infections....or leaky gut, etc. Even though those are all a part of it....I dont feel that they are the reasons for the symptoms that I get. I can see now how eating the wrong foods can really burden the system....as far as whether its adding in too much sulfur....or causing excess ammonia....or increasing dopamine levels that might already be too high, etc. etc.

I think the effect that these blocks have on the entire cycle is pretty significant...so everything gets really thrown out of balance. On top of that the metals accumulate....and then on top of that there are the inevitable infections...things just get very out of balance. I can see now how if the cycle remains impaired.....the bugs we try to kill off never really leave. The metals never really leave. Even if you eradictate enough lyme to become symptom free....and even if you chelate alot of heavy metals....if the cycle is still impaired....it all just comes right back. We relapse once we stop treatment because we still have very impaired detoxification. Toxins come in...and they dont come out.

I am following what you post with a lot of interest. My food sensitivities are not a huge problem in terms of reacting to everything like I used to. Of course I may have naturally eliminated a number of them with SCD. On SCD, the only things I am clearly reacting to are eggplant and squash, and possibly tomato. Oh, coconut is a problem usually too.

Eggplant can raise dopamine levels....but if you can eat avocados and bananas it probably wouldnt be related to that. I have the same reactions to all foods that raise dopamine levels. One of my mutations indicates that I would have higher than normal dopamine levels (decreased ability to break it down) which often results in sensitivities to foods that are high in dopamine. I already knew that I had sensitivities to certain neurotransmitters (including dopamine) so the mutation totally made sense to me.

Tomato is high in glutamate (MSG), salicylate, amines and oxalates. I think its pretty common to not tolerate tomatoes since its highly phenolic and contains pretty much everything that might be problematic for someone with impaired enzyme function.

Glutamates can be a pretty big issue for some people.....its another issue/imbalance that occurs when methylation is impaired.

In the first pages of this thread we talked about excitotoxins.....and this is actually one of the first things that Yasko recommends.....making sure to eliminate excitotoxins from the diet. This includes all hidden sources of MSG...as well as apartame/aspartate, glutamine and foods that are high in glutamic acid.

I remember taking glutamine for leaky gut and having a very negative reaction. Of all things tested with the new voodoo doctor....glutamine was the one that I had the biggest problem with...BY FAR. She said that I could not have anything that contains glutamine. This would also be a consequence of so many things being out of balance. I also read that glutamate/MSG significantly increases the toxicity of mercury (synergy).

There are some people on the Yasko board who are also doing SCD. For some people its too hard to follow the diet once they get their genetic results.....because sometimes the SCD foods are foods that need to be elimated from their diet (high protein, high sulfur, etc.).

I dont know what the deal is with coconut but it seems like alot of people are highly sensitive to it. Its high in amines, salicylates and sulfur (cant remember whether or not its high oxalate). When I did all of the BioSET testing I believe it was considered to be my most reactive food. I reacted to everything having to do with coconut. Yasko has it on her list of "sulfur donors". Those are foods which need to be limited or avoided....for those who have mutations which would increase sulfur stores in the body.

In the stuff you are reading is there any way to guess at the mutations based on symptoms?

Well.......we can always guess. I've been guessing because I'm curious and dont have answers yet. I cant help but guess....and I figure I have just about every mutation based on this or that. :P Realistically though...you cant really know without being tested. Symptoms and even labwork can be misleading. The urine amino acid test is one of the ones they use as a guide once treatment is started....and there are constant changes as different things are addressed.

Right now I have no indication of having the CBS C699T mutation....my ammonia level is normal and taurine is normal....and those are two of the biggest indicators. However, many people who DO have this muataion do not see signs of it in initial tests. This is because other mutations in the pathway may be preventing it from clearly showing up. So alot of the time when a person gets the genetics and starts treating based on the results....the pathway begins to function and you then start to see the indicators of these mutations in the labwork.

Right now looking at my urine amino acid results I would "guess" that I have a problem with the BHMT gene....because the indicators for that are all out of whack. When I asked about it......the response was that it LOOKS like there is a problem with BHMT.....but it could also be something else going on that is making it LOOK that way. Also someone told me that in their case they had the CBS mutation...but in the initial amino acid tests the ammonia and taurine levels were within range....so it was not apparant. They had results similar to mine before they started treatment.

This is why I cant really be certain of anything until I get the results. I dont think that symptoms can tell us anything because of the way certain mutations can throw alot of things out of balance. I might *think* that I have a certain mutation because of the way I react to certain things.....but it doesnt make it true. If you think of it as all being connected (which it is).....then it makes sense that when one thing doesnt function well it can place a burden on something else...and so and and so on.

Unfortunately pursuing this area looks to be very expensive, as is the bionic 880 treatment. Can you explain again why it is so long to get the results of the genetic testing?

I think its more affordable than the bionic 880.....at least for me it is because I'm not putting alot of money out at once. The test was expensive....but the cost was almost equal to what I spent on Igenex co-infection tests alone. To me its not a significant amount of money in comparison to what I've already put out for doctor visits, labwork, energetic testing, supplements, conventional procedures (ultrasounds, endoscopy, colonoscopy, MRI, etc.) over the past 6 years.

If it doesnt help me I cant say that I would regret it......because I havent really felt that way about anything else I've done. Its all brought me to where I'm at now and I have to say that its a MUCH better place than where I was at the start of this thread. I'm just following my instinct.....and I feel this is definately the next step for me.

I think that whatever it is that helps us the most (whether its bionic 880, Yasko's protocol, or something else)....no matter what the cost.....in the long run its more affordable if it actually improves health (so that its no longer necessary to constantly put out money for more tests, doctor visits, etc).

I dont know why it takes so long to get the genetic results back but the lab says 6-8 weeks. I'm just kind of assuming it might take longer because of the holidays. If I get them back on time (or earlier) I guess I'll be pleasantly surprised. :)

Rachel, just looked at my Doctors Data from July. Ammonia is very low. 7940uM (ref: 12000-56000). So not sure what the yucca may be helping. Is there any of the mutations associated with low ammonia?

I just dont think that the lab results alone can tell us anything. All of the genes in the pathway interact...dysfunction is dysfunction....so its pretty difficult to come to any kind of conclusion based on just the lab results. Some people have very elevated ammonia and taurine......making it look like they have CBS upregulation (C699T)...and then it turns out that they dont....and the issues are elsewhere in the pathway. Its definately easier to resolve when CBS upregulation is not an issue.

The labwork is more of a tool so that once you have the genetics and you have a "baseline"....then as you proceed you can see what changes are occuring. This can let you know whether there might be too much emphasis in certain areas of treatment....maybe you need to back off on certain supplements, maybe you need a larger dose, maybe things are looking good, etc.

They also do regular spot urine tests for metals. This is because when the methylation cycle starts to function and detoxification is taking place....there can be flares in symptoms. By doing the tests for metals you can be clear as to whether or not the flare-ups (regressions) are due to the body's sudden ability to detoxify....or if something is not being tolerated and symptoms are due to some other problem.

Lyme and virus complicate things by holding onto the metals but as long as the infections are being addressed and the pathway is open...things should start moving out.

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Donna,

Happy to hear you've been doing better. Hope you have enough variety on your miniscule food intake right now.

April,

Good to hear you've been holding up with the move. That kind of thing can be very wearing as well as stressful. That's amazing about the effect bread has on your son. :o

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I have been super busy and seemingly able to keep up. We are moving the office where I work so that has been a lot of work. So far...I haven't crashed!

Yay....that is definately a good sign. :)

I just made it through the most hectic work week of the year....fortunately I have lots of energy because I definately needed it the past few days! OMG people get CRAZY during the holidays! :blink:

Customers had me all over the place.....especially yesterday.

Today I was walking down one of the ailses and a little boy standing in a shopping cart just hauled off and punched me in the chest as I walked by! :blink:

I still cant believe I got punched like that :o ...but it was funny as heck. I couldnt help but laugh. :lol:

Donna,

Glad you are feeling a bit better these days. What in the world is floppy intestines?

Yes Donna.....please explain to us! :lol:

I never heard of FLOPPY intestines :huh: ....but I think you must be right.....there almost certainly is an alien baby involved! <_<

I think the floppiness must come from all of the abuse alien baby has inflicted over the years....the constant kicking and such. I would imagine after awhile we just end up kind of FLOPPY. :rolleyes::P

Makes sense that the floppiness might need attending to....like stapling or folding....or whatever it takes to make things less floppy. :lol:

Sorry Donna......I've had lots of FOOD over the past few days :ph34r: ....and so everything just seems pretty amusing to me right now....especially FLOPPY INTESTINES. :lol:

Geez....I think I exceeded the emoticon limit.

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Rachel,

What is the link to the yahoo group you are on? I am very interested in learning more about this methylation stuff although it is very complicated. Gotta start somewhere though, right!

April, I'm not on a yahoo group. I think that Nancy posted that she's on the CFS yahoo group where people are doing the simplified version of Yasko protocol. I'm on Yasko's parent discussion forum......its mostly parents of autistic children. The people on that forum are doing the full protocol....so they started with genetics....and many of them are getting help/guidance from Yasko. Its her forum.....she posts there and all of the info. about the protocol is there as well.

I think the info. on the forum is very confusing.....better to start with some of the other websites or her book. At first alot of what I read on the forum was over my head....but after reading and watching her DVD's I went back to the forum and I was able to understand it.

I wouldnt bother with the genetic bypass book unless you've ordered the gene test. It just explains each genetic variation and the recommended treatments. If you dont have genetic results then it doesnt really help you. It comes free with the test. I think its about $40 on Amazon...but again, I dont think its helpful unless you plan on doing the genetic testing.

If you're interested in the Yasko stuff the book that is recommended is "The Puzzle of Autism". I havent read it yet but this book is suppossed to explain alot about the methylation cycle and how its related to health issues.

I think I still have some kind of methylation or detoxification issue.

My guess is that we all do...to some extent.

It's not that I want to go out and drink :P

Haha.....well, I'll be totally honest....I'd freakin LOVE to go out and drink!! :lol:

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Yes, it is what Carla did.

Here are some blogs:

http://www.betterhealthguy.blogspot.com/

http://pathogensoup.blogspot.com/

and there is another one but she blogged only for some days, and she is so much better after treatment now, she posted on lymenet and still posts there.

There are about three threads on it on lymenet, and the long one is still active. Someone posted and complained that the bionic discussions had taken overhand there but I do not agree...

http://flash.Lame Advertisement/scripts/ultimateb...ic;f=1;t=074663 treatment after the bionic

http://flash.Lame Advertisement/scripts/ultimateb...ic;f=1;t=070037 the long bionic thread

Thank you so much Nora. I can't get the Lymenet posts as I am getting an error, I will try to do more searched on Lyme Net.

Nancy

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A quick drive by to wish everyone a HAPPY THANKSGIVING!! :)

Its been a busy week at work....havent had much time to post but I will try to catch up later on. Have a great day

As Nancy mentioned some people require hydroxyB12 rather than methylB12 and with Yasko this is determined based on genetic results of the COMT and VDR enzymes. The reason is that some people use up methyl groups rapidly (based on their genetics) and some people have more methyl groups available due to slower functioning enzymes. The ones who use up methyl groups rapidly will require more....meaning they will do better with methylB12 and other supplements which add methyl groups. Others, (it looks like I'm probably in this group) will react badly to methylB12 or too many methyl groups because they already have plenty.

The group that I joined focuses totally on the genetics. Everyone posting is following Yasko's protocol. A really knowledgable group.....but since they focus on the genetics as the basis for treatment...with specific tests to guide them....then they dont offer much help without knowing the genetics. I still have to wait a couple months until I get my results.

Just to clarify..on the Yasko yahoo group I am a part of, CFS Yasko -it is universally accepted that if you suffer from CFS symptoms, do stay away from Methyl B12. I get much, much worse on Methyl B12. Everyone in this group is also doing the Yasko protocol and about half have done the genetic testing. Many are NOT seeing dramatic results yet and have a certain level of frustration as some have been at it for many months if not years on and off. This group is extremely knowledgeable and I think a bit broader in scope. They deal with every topic we concern ourselves with - mold and Dr. Shoemacker's protocol, methyl/ blood brain barrier, ammonia, candida, supplements on and off the protocol list, test results and interpretation, colon polyps, infrared sauna and detox and on and on. The Chronic Fatigue can't be fixed with a magic bullet and many in this group are not treating bacteria or parasites and that is a major cause of the fatigue.

Nancy

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Just to clarify..on the Yasko yahoo group I am a part of, CFS Yasko -it is universally accepted that if you suffer from CFS symptoms, do stay away from Methyl B12. I get much, much worse on Methyl B12. Everyone in this group is also doing the Yasko protocol and about half have done the genetic testing. Many are NOT seeing dramatic results yet and have a certain level of frustration as some have been at it for many months if not years on and off. This group is extremely knowledgeable and I think a bit broader in scope. They deal with every topic we concern ourselves with - mold and Dr. Shoemacker's protocol, methyl/ blood brain barrier, ammonia, candida, supplements on and off the protocol list, test results and interpretation, colon polyps, infrared sauna and detox and on and on. The Chronic Fatigue can't be fixed with a magic bullet and many in this group are not treating bacteria or parasites and that is a major cause of the fatigue.

Nancy

I dont think dramatic results are typical....according to Yasko its a slow process. There are alot of parents who do see dramatic improvement but I think its usually more slow and gradual....with setbacks and complications along the way.

Its an autism board and I think that some kids (if treated early on) can make dramatic improvements......but I think that adults and older children dont typically have it happen that way. I think the toxic burden is higher and the body has been impaired for a longer time.

All of the associated problems are discussed in seperate areas of Yasko's forum....but the main focus for those people is the methylation cycle. Alot of them report that methylB12 was the one thing that brought on the most significant changes.....for the better. I dont know why everyone with CFS would respond negatively to it. I dont think it can be totally linked to mercury since most ASD kids have a heavy mercury load....and some are having the biggest improvements once they start MB12 shots. Others do not have good results and find that once they started on hydroxyB12 they got the improvements.

I am not expecting dramatic results because Yasko makes it pretty clear that it doesnt happen that way. There are people on that forum who are frusterated as well....but alot of times its pointed out by Yasko (or other board members) that the person isnt following the protocol....and just kind of trying various things...or going off and on with it. They also arent monitoring their treatment with routine testing....and so there isnt anything to look at to see which direction they need to go.

I havent started yet....so I dont know what my own experience will be like. I also dont know if I'll be able to follow the protocol to a "T"....I'm just gonna do the best I can and see what comes of it.

My feeling is that adults have a heavier load of pathogens, heavier loads of toxicity...and the methylation cycle has been impaired for many years (if not a lifetime) so if all of these things arent addressed simultaniously (which is a huge challenge in itself) its really difficult to see improvement. There isnt a magic bullet for any of it.

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April,

I am so sorry i never seen your pm til you mentioned it, I get so many pm;s being an mod, that i usually dont see the ones meant just for me. I will get back to you later today. But i am doing so much better. Andrea helped me threw some of it and helped me let go of the anger.

Everyone,

I am doing really good on the new supplements. I have only had an reaction to the one with vitamins and minerals, so im not going to do that one again for awhile. But I am feeling great now. I am sleeping at night, i have so much more energy and actually spending more time with my hubby lol. I stil have to add in like 12 more supplements but so far so good. I really think i really think my health will be good for the new year

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Donna, this is fantastic news! I bet you are losing weight with all of this challenge, too. Hope you can enjoy your holiday dinners a little at least.

Happy to hear you've been doing better. Hope you have enough variety on your miniscule food intake right now.

Yeah, I've lost about 13 pounds. I can FINALLY fit into most of my clothes again, lol. I expect I'll gain a little bit back once I can get my calories over 1000...I've figured out that I'm only getting between 600 and 900 calories a day...definitely not healthy, but at least I feel full, lol. Even better news is that I can work out again. The doc gave the okay and so I've started with some brisk walks...my toe is holding out and I'm able to get in some really good walks. He gave me the okay to lift weights too, so I've been doing a little weight work as well. In a week or two I should be able to do some better aerobic exercise, and that should help keep the weight off.

I've expanded my foods to chicken, ground beef, green beans, white rice, potatoes, jello, fruit juices, applesauce, asian rice noodles. I tried an egg this morning, but couldn't finish it because it was sort of making me feel ill, lol. That's different than the pancreatitis attacks though...this is just an on again off again thing I have with eggs.

ROFL about floppy intestines! What a scientific term!!! :o Now I wonder what the downside is of having a too floppy intestine???

Glad you are feeling a bit better these days. What in the world is floppy intestines?

Yes Donna.....please explain to us! :lol:

I never heard of FLOPPY intestines :huh: ....but I think you must be right.....there almost certainly is an alien baby involved! <_<

I think the floppiness must come from all of the abuse alien baby has inflicted over the years....the constant kicking and such. I would imagine after awhile we just end up kind of FLOPPY. :rolleyes::P

Makes sense that the floppiness might need attending to....like stapling or folding....or whatever it takes to make things less floppy. :lol:

Sorry Donna......I've had lots of FOOD over the past few days :ph34r: ....and so everything just seems pretty amusing to me right now....especially FLOPPY INTESTINES. :lol:

Well, I don't know what it is or why it's important, but I do know that I looked up the medical term for the procedure he did and it said "to correct excessive movement of the intestines". Not sure why exactly it's a problem, but I can see that it might be a problem, lol.

No need to apologize about eating lots of food...I can live vicariously through other people, lol.

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Well, Donna, the rest of us are now wondering, "Do I have floppy intestines???" :lol:

So glad you are better! That's good news.

Rachel, I don't handle bananas well. But I haven't noticed any problem with avocado, although I can't get it out here unless I find it imported somewhere. Interesting, another thing to research.

Also, on the B12: I thought when I tried the two that the hydroxy B12 was better for me. But ART was very clear that the methyl was better so I switched. I don't notice one way or the other when I take the shots versus the days in between. But I do notice improvement with the glutathione shots and DMPS. I also think the magnesium shots help a lot. B vitamins did at first, now it feels more like I am maintaining and I have cut the dose.

My hair has hugely improved in volume, thickness. It was very fine, limp and not much of it before, plus in '05 for months had a huge amount of hair loss and had to wear a wig for months. So I am obviously getting some nutrients in whether through ingesting or injection.

Sherry

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Rachel, do you have a good source about dopamine in foods? I notice dairy seems to be an issue, but I am fine with butter, aged cheese (I don't use a lot) and goat milk yogurt.

Sherry

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Rachel,

I looked over the list of foods high in sulfur, salicylate, amines, and oxylate, and no pattern stands out to me. Maybe it is just intolerances to the food proteins mostly.

Sherry

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