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Rachel--24

Omg...i Might Be On To Something

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Rachel,

Its amazing to me that as we review these things over and over, about the methylation and stuff, that it gradually DOES start to sink in!

I think I have some disruption but it seems a bit different than you and Nancy. Plus I do have the infections as issues and most likely celiac to contribute to the malabsorption as well as the metals.

I didn't tolerate Betaine, I have been low in glutathione, taurine and cysteine. Not sure about the folinic acid, seems like it is in something I am taking. I tolerate MSM, taurine, glutathione but not cysteine.

I am still anxiously awaiting my SAM/SAH results--which were drawn 6/30! Talk about waiting for lab results! The lab took a 3 week vacation, and now my LLMD's office is closed for 2 weeks.

Nancy, or April, forgot who asked: I'm taking Enula for babesia, but it also tests really well for parasites and for chlamydia pneumonia and mycoplasma. ART shows that the Enula is really working well for me.

Sherry

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Dear Everyone,

I would have posted sooner, but our power went out again. :angry::rolleyes: That is the fifth time this week! I hate living in this neighborhood! Considering how high the electric bill is, the least these idiots at the power company could do is keep it on! This is why I was unable to catch up reading. Stupid power outages! :(

Now, here is the stupid part. We did not have a storm or anything the last few times it went out. It just goes out for no reason. WTH? I think there are too many people on the same transformer. The thing is probably short-circuiting.

In other news, my bunny is adjusting well. :) He is already spoiled. Yesterday, he decided at 11am it was time to play. So, he poked his head through one of the holes Dad drilled in the top of his cage, and proceeded to bite the lid! :lol: Another habit of his is stomping with his back feet when he wants attention or is angry about something. All of our rabbits have done this, so I already knew what it meant. Due to this, he is now officially named Boomer.

Dart is terribly jealous, and hates him. Last night, he began snarling at Mom and Dad. He had to go up in his cage for that. The night before, Dart jumped up while I was holding Boomer and nearly bit his butt! :o Boomer was terrified. Thank goodness he did not get him. Our dog also has lifted his leg up on the bag I had the towels in for the laundry. My bunny primarily keeps his messes in one place. Well, except for his "christening" Mom the other night. :lol:

Yesterday afternoon, I had another appointment with Dr. D. It went well. He is encouraged that the okra pepsin is moving out mucus from the colon like it is supposed to. The one supplement is to be stopped, and I am to take a new one with bentonite clay in it to help digest fats. This supplement also contains bile salts. I am to continue the okra pepsin, and begin taking a chlorophyll multi-vitamin.

His goals is to repair the intestine while removing toxins. I was worried because I had been feeling somewhat worse, and asked if perhaps that was due to detoxing some. He said yes, and was encouraged that I am excreting more through bowel movements. Another topic I mentioned was my concern about the yeast. Once the nutritional aspect is addressed and corrected, Dr. D said we can pursue that. I see him again October 3rd.

Sincerely,

Jin

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Jin....sounds like things are going well with the new Dr. :)

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Of all the cowden herbs I tried I found Cumanda to be the most powerful. Um...maybe thats because I have fungal issues. :P

The other herbs didnt really have an effect. Hmmm....maybe I'll get back on Cumanda...if I can find it. I think I have a whole bottle somewhere.

Yeah I LOVE my Cumanda...I rotate that with Banderol, and those two are the only two "lyme" things I'm really still on.

Everyone,

I have an update. My GI doc just called a while ago (yes, on a Saturday, lol). My growth IS precancerous and he recommends having it removed. It's really slow growing, so there is no rush, but he does recommend having it removed. And because of my work rules regarding leaves, I'll need to have it done within the next 10-11 months...so the "rush" isn't medically, it's work related, lol.

Apparently he sent not only this biopsy, but all the slides of all the biopsies we did from two years ago to Harvard for a second opinion. They concluded that it is precancer.

The GOOD NEWS is that the surgery to remove it is not nearly as horrible as the one I thought it would be. And further good news is that there are surgeons locally (in his medical group even) who can do it so I won't have to travel. My doctor can assist in the surgery and that makes me happy since he is so familiar with my case.

He doesn't think the surgery can be done laprascopically, but the incision would be small. I didn't ask specific questions about recovery time...I'll ask the surgeon when I see him.

So his nurse will put in a referral on Monday to the two surgeons he has spoken to about my case and I'll call either Monday afternoon or Tuesday morning to make an appointment with one of them. The one who is most familiar with my case is out of the office for a couple of weeks, but since there's no rush, that's okay.

I have to wonder how much of any of this is related to all the mold/lyme/metals/gluten/gut issues, lol.

Oh, and my 1st real outing went really well yesterday! I had dinner (a belated birthday celebration) at my friend's house and it was great to get out and about. My second outing was this morning...My mom took me to Longs for more bandages and to Whole Foods for groceries. Yay! :)

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Donna, I am so glad you finally know and have a plan. While I am sorry for the precancerous confirmation, all the other things sound really positive and maybe helping reduce the anxiety a bit. So glad it is slow growing so that you have time to make a decision you are comfortable with.

Is this a type of cancer that is common in celiacs?

Sherry

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The stories on the www.pecanbread.com website had me in tears, all the ASD kids improving on the SCD. But some of the most striking to me has been the bipolar people improving. I've read that on the gluten-free forum here too. One the stories I read today was a grandmother with Asperger's all her life, with major improvements on the SCD--and wishing she had known about it in her childhood.

My sense is that it is helping me. I am really feeling a lot better, and it has been gradual since starting the diet. I am still having symptoms in the morning which I am watching. It is joint/muscle and actually started when I started Enula and a couple of other changes and went off Zithromax. It got worse initially on SCD now is better but definitely present. It's what I associate with lyme, but there may be more to it. I have a couple of joints that are really quite sore and stay that way all day.

It is hard to know what this is, but the ART shows lyme and babs well under control so I am okay with just waiting to see what happens.

Sherry

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Is this a type of cancer that is common in celiacs?

I don't think so...this type of cancer is fairly rare. I know when I first started trying to find out about it two years ago, I didn't get many hits.

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The GOOD NEWS is that the surgery to remove it is not nearly as horrible as the one I thought it would be. And further good news is that there are surgeons locally (in his medical group even) who can do it so I won't have to travel. My doctor can assist in the surgery and that makes me happy since he is so familiar with my case.

Donna, I'm glad you got a definative answer finally and can go ahead and have it taken care of. Really good news on the surgery not being horrible and that you can have it done right here...with Dr. R. assisting. I'm sure thats a big relief.

Also, YAY on getting out of the house....TWICE. :D

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Rachel,

Its amazing to me that as we review these things over and over, about the methylation and stuff, that it gradually DOES start to sink in!

I think I have some disruption but it seems a bit different than you and Nancy.

Yeah...I can tell that its starting to sink in because I'm actually getting some replies to the scientific posts. :D

Of everything I've researched this stuff is by far the most complicated and the most difficult to understand. I'm learning it little by little. Hopefully as I proceed with the new Dr. I'll gain a better understanding of how the process works.

We're all very different so I would have to assume that any glitches in the pathway would vary. They would not be the same nor would they be corrected in the same manner for every person.

Some kids with Autism have low cysteine....some have elevated cysteine. The ones who have elevated cysteine would most likely respond negatively to NAC, cysteine, glutathione, MSM, etc. The ones with low cysteine would most likely benefit from those same supplements.

Dr. P. is thinking that I will have elevated cysteine....indicating a block in transsulferation (the last part of the cycle). I'm most likely unable to synthesize homocysteine to cysteine to glutathione. I'm unable to convert toxic sulfites to the useable and essential form (sulfate).

Heres a few good diagrams of the pathway.

http://www.autismcoach.com/Glutathione%20Research.htm The yellow ovals represent catalyst enzymes which keep the cycle going. The 3rd part of the cycle is transsulferation...which starts where the Homocysteine is converted to Cystathionine. The CBS enzyme is one that Dr. P. believes is not functioning....causing a buildup of toxic sulfur....and a deficiency of sulfate and glutathione.

I think treatment is more complicated when transsulferation is impaired. The lack of sulfate is what causes the deficiency in the pathway which results in phenol intolerance. The body is unable to detoxify phenols, amines, hormones and excitotoxins (cysteine included).

I do have blocks in methylation as well but this cant be successfully treated unless the transsulfation part of the pathway is functioning. Nancy, that might be why you did so poorly on the B12.....possibly it was revving up that part of the cycle but because sulfation may be impaired it leads to a toxic buildup of those sulfur containing amino acids.

it is important to characterize relevant polymorphisms prior to bringing up the methylation cycle operation.

One of the most important aspects of this is to evaluate polymorphisms in the CBS (cystathionine beta synthase) enzyme, which is located at the entrance to the transsulfuration pathway and converts homocysteine to cystathionine.

Although this is somewhat controversial within the research community, Dr. Yasko finds that certain polymorphisms cause an increase in the activity of this enzyme. The result is that there is too large a flow down the transsulfuration pathway, and somewhat counter intuitively this results in lowered production of glutathione, as well as elevated production of taurine, ammonia, sulfite and hydrogen sulfide. The last three of these substances are toxins.

If a patient has CBS polymorphisms, it is necessary to deal with this aspect before restarting the methylation cycle. If this is not done, efforts to start this cycle will result in increased production of these toxins. This may explain why some patients cannot tolerate direct efforts to build glutathione using sulfur-containing substances, while others derive some benefit from this. Dealing with this CBS up regulation situation can take a month or longer.

http://planetthrive.com/cgi-bin/members/pu...taldisplayed=50

I'm not sure if the problem is caused by an increase in enzyme activity (as stated above) or if it is caused by a block in that particular enzyme (a deficiency)....which would pretty much prevent the cycle from continuing on with converting cysteine to sulfate, taurine and glutathione.

Either way it looks like starting the methylation cycle up can cause a toxic buildup of sulfur in an individual with impaired transsulferation.

Does that make sense?

Heres another diagram... http://www.nutriwest.com/articles/homovmsm.htm

You can see where B6 (P-5-P) and magnesium are necessary cofators of the CBS enzyme.

CBS is a vitamin B6-dependent transsulfuration enzyme needed to synthesize cysteine from methionine, catalyzing the condensation of serine with homocysteine to form cystathionine.

I was told (by Dr. Amy) to avoid B6 (P-5-P) because of my problem with phenols. B6 is known to exacerbate the phenolic issues.

I was especially concerned with that and the fact that I *need* B6 in order for the pathway to function normally.

I found this info...

Why do we see the constant trend of people with phenol intolerances having bad reactions to high B6 supplements?

This seems to go back to the methylation cycle. If you look at the diagram at the link given above, you see that B6/magnesium converts homocysteine to cysteine. However, in order for the cysteine to be converted on you need sulfation to be working properly.

Those with faulty sulfation processes are not able to do this well and too much cysteine accumulates. Cysteine has excitatory properties and can even be toxic in high amounts. So supplying B6 increases the cysteine supply where it gets stuck in the pathway and accumulates.

Then I found this info...

Dr. Waring

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For anyone interested here's a description of the urine amino acid test (I'm gonna take it tomorrow).

http://www.doctorsdata.com/test_info.asp?id=10

and here's a sample report....it provides alot of info.

http://www.doctorsdata.com/repository.asp?id=1586

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Gosh another astonishing thing...

I just woke up from a nap. I NEVER take naps. I'm even still groggy! :o:lol:

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Donna,

I'm sorry it turned out to be pre-cancerous, but it sounds like it can be dealt with successfully and you have a doctor who is on the ball.

The operative word here is "pre"--thank goodness you pushed for that diagnosis so that you can be rid of it once and for all. :)

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For anyone interested here's a description of the urine amino acid test (I'm gonna take it tomorrow).

http://www.doctorsdata.com/test_info.asp?id=10

and here's a sample report....it provides alot of info.

http://www.doctorsdata.com/repository.asp?id=1586

I've had this done, more than once I think. Last winter's showed a number of deficiencies and we've been treating.

Sherry

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Rachel, I don't get most of those links...but I did look at them, LOL! I am really looking forward to getting my SAM/SAH results because that's part of the picture too.

But yeah, I'm on the low cysteine end, and seem to handle sulfur to a certain point.

Sherry

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Donna, I'm glad you finally heard about your results, the waiting has been the worst <_<

Sorry the news was not what you had hoped, but it does sound like the Dr is confident about it and on top of it for you, and good to hear the surgery isn't as involved as you thought.

Yay on your outings!!! :D

Rachel, all your scientificness is over my head right now :lol: It's not even that heavy, my eyes are just glazing over at anything health related and big words at the moment.....

Jin, glad things are continuing to go well with your chiropractor :)

Sherry, great news you continue to improve on the SCD

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Rachel.

All that stuff is going over my head lmao. I just look at it and im like ummmm ya lol.

I have had 2 awesome days in a row. Im so happy. I dont think i have shopped this much in months. I even made it to the farmers market today, remember 2 weeks ago lol. Ok the kids want to go for the 4th bike ride today.

We also got the teddy hamsters today. They are so cute. They are boys, but the girls swear they are girls. They named them princess and dora lmao. Poor hamsters will be confused for all of their lives. Just like me lol

paula

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Rachel, I don't get most of those links...but I did look at them, LOL!

Rachel, all your scientificness is over my head right now :lol: It's not even that heavy, my eyes are just glazing over at anything health related and big words at the moment.....

Rachel.

All that stuff is going over my head lmao. I just look at it and im like ummmm ya lol.

OK...just wait....one of these days its all gonna make sense. ;)

In the meantime I'll just keep posting as I learn it. :P

I think this metabolic pathway stuff is the most important piece of the puzzle for alot of people who are struggling.

I dont understand all aspects yet...but I do have a good understanding of transsulfuration...only because I've been looking at that part of the pathway for awhile now.

To be continued..... :lol:

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We also got the teddy hamsters today. They are so cute. They are boys, but the girls swear they are girls. They named them princess and dora lmao. Poor hamsters will be confused for all of their lives. Just like me lol

How cute Paula!! :)

Porr little hamster dudes...um...I mean "Princess" and "Dora". :lol:

Glad you're out having fun with the kids!!

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Dear Rachel,

Thank you for the information on the sulfite conversion and blocked pathways! :) That was some awesome scientificness! ;) I pasted and copied your post into a Word document, so I can access the links any time I need to. All of this is so fascinating! I also got the link for the amino acid urine test. Doctor's Data really does have a wide variety of testing they do.

Dr. D really is on the same wave-length as me! We had a conversation about metals Friday. I was telling him how I am worried about aluminum, since I use it so often. He is nervous about it as well! :o Dr. D is also aware of the mercury connection to Alzheimer's. So far, he is the only physician I have met who is.

Dear Patti,

As you said, it is good Donna pushed for the diagnosis. If she had not, she would still be waiting. Cancer is one thing you do not want to take a chance with! The sooner it is discovered, the better. Pre-cancerous is even better, since you can correct the trouble more easily.

Dear Donna,

Despite how frightening the pre-cancerous diagnosis is, you are probably just relieved to finally know. Not knowing is often worse than finding out. Waiting for test results drives you crazy! :blink: What a relief the surgery will not be as bad or as far away as you originally expected! :) Let us know when you find out more.

Getting out was likely nice. Being out among the living again is a good feeling. Sometimes after you have had surgery or have been stuck at home for while, it feels as if you have just emerged from a bomb shelter.

At times, I feel like I am in prison. :( I really need to get my driver's license, so I can get out more!

You finally can nap?! :o:) I know you have had a very difficult time with sleep. Normally, once I am awake, I am awake for the day. Every now and again I am able to nap. When I was in high school, I would nap every day.

Dear Julie,

Dr. D has such good, calm energy. Looking into his eyes is like the sense of peace and knowing you have when you look at the ocean or the sky. It is difficult to describe. I also met this man who used to be a hippie. He went to the concert that was larger than Woodstock. We had a nice conversation.

It is always nice to meet a fellow hippie. I wondered if there were any of us left. :unsure: I know I was born in 1982, but my tie-dye bed spread and attitude toward things say I am a flower child. You should have seen the look on the face of my rabbit the first time he saw my bed spread. His eyes got big, like he thought he was tripping out or something! :lol:

There are days scientificness is not the only thing that goes over my head. For instance, I often misplace my glasses. Sometimes I wear my contacts, and other times I do not. Papers are everywhere, since I go through a ream of paper per week. It is not always avoidable to lose things around here. Our house is so messy, it would drive anyone insane! Apparently, my parents have a fear of being clean and organized. :angry:

Dear Paula,

Two really good days are terrific! :) Those hamsters are always so adorable! That is hilarious about your girls insisting on naming male hamsters Princess and Dora! :lol: Hopefully, they will not end up confused, but this brings up an interesting point. In movies and television shows, why do they always have an animal played by the opposite sex? Lassie was actually a male dog, Flipper was played by three female dolphins, and Verdell in "As Good As It Gets" was played by Jill.

Dear Sherry,

We hope you receive your SAM and SAH results soon, too. That is very interesting about the SCD helping Autism as well as Bipolar Disorder. Gluten also is connected to Schizophrenia. There is no way this is a coincidence. It is nice to hear you have improved upon trying Enula and the SCD.

I get muscle jerking as well. It could be Lyme, or nutritional deficiencies. I know when I took a multivitamin before, they stopped. Usually it was when I was about to drift off to sleep, then my arm would jerk.

Sometimes it still does. The reason I stopped taking the multivitamin was due to a possible die-off reaction. My stool became overwhelmingly strong, and it was as if something was being forced out through my colon. This multivitamin was liquid, and had GSE.

I believe that the GSE was causing a herx from yeast die-off. My body could not take it. The supplement has a lot of different herbs in it. I am not sure it is safe to mix that with my medications. At least I only take a few prescriptions. Still, I should check for those OTC sinus pills as well.

Dr. D does believe baby steps are best right now. My system is too fragile. Something interesting he said was this supplement with the bentonite clay has helped women with ovarian cysts. I was telling him I know the Depo-Provera could be making it more difficult to get rid of the yeast, but expressed my fear of cysts returning.

How much do you want to bet that since PCOS is caused by yeast, that is the reason the bentonite clay helps?

I have a feeling my system does not like sulfur. From what you said, it makes sense you would not react as badly to it, since you are low on cysteine. According to what Rachel posted, this is common. People with Lyme tend to have more problems with pathways than other people. Anyone with the HLA-DR4 gene is at a particularly high risk.

Sincerely,

Jin

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I love the scientificness! This is a very hard subject to learn, though. This is definately something that interests me since I had some sort of pathway blockage.

I am also interested in that test and am wondering if it would be right for me. I noticed that if there are certain deficiencies then you are more likely to have an environment friendly for yeast.

What I want to determine is what keeps my stomach from completely healing. I believe that *something* is doing it. Not sure what yet. I have to take digestive enzymes at every meal. If I don't I can get bloated, gassy, and painful to the touch. Sometimes I get tired after I eat and cold. I believe that some foods are still causing inflammation. And I have started gaining weight again. I really think I need to go gluten free again, but darn - its so hard!

I know that yeast plays a part, but something else is still is going on. I just have to figure out what.

I was going to ask you guys what test you might recommend.

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Donna,

Sorry about the Pre-cancer. That is scary! But glad that it is slow growing and an easier surgery than you anticipated.

Jin,

Cute bunny! I had bunnies when I was a kid. I wanted to get one for the kids but wasn't sure if the fur was similar to cat fur. My little boy is allergic to cat dander.

Sherry,

Glad to SCD is working for you. I read a bit about it and wondered if I would need to start it completely from the beginning. That is what is keeping me from trying it. I don't think I can endure anymore complicatedness right now!!

Did you have testing that indicated this would be the right diet for you? Or did you just try it and see?

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OMGOsh you guys....remember my nap...I think I slept for about an hour...maybe two...I SLEPT LAST NIGHT. On the rare ocassion when I can take a little nap, it often makes for a sleepless night that night. Not so last night, lol. I've been up for about an hour and I feel like I might be able to take another nap, lol. Now, this might sound bad, but honestly, I'm just sleepy...not exhausted like a few months ago. I'm not quite sure what to make of this. :lol::PB)

I should make an appointment with Anna to see if my pathways are still open. The last time she tested me my toxicity was low and my pathways were open. I have no reason to think they aren't open, but I know I still have a lot of inflammation.

The operative word here is "pre"--thank goodness you pushed for that diagnosis so that you can be rid of it once and for all. :)

Yeah, everything else has kind of taken a back seat to this and the foot in the last few weeks so I'm anxious to get this done with so I can get back to the lyme/metals/mold/everything in the world stuff. :lol:

Getting out was likely nice. Being out among the living again is a good feeling. Sometimes after you have had surgery or have been stuck at home for while, it feels as if you have just emerged from a bomb shelter.

At times, I feel like I am in prison. :( I really need to get my driver's license, so I can get out more!

Yeah, that's totally what's it's like, lol. I feel out of touch with the universe, lol. My big outing for today may be to take out the garbage and maybe start my car...I'll have to see how the morning goes.

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I've had this done, more than once I think. Last winter's showed a number of deficiencies and we've been treating.

Sherry

What type of markers showed up for you? Were there markers for impaired detoxification or oxidative stress??

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I dont take epsom salt baths anymore (its been months) because I was feeling kind of "off" sometimes after the bath. I think it was because of sitting so long in the chlorinated water. I do really well with magnesium sulfate cream. Besides the digestive enzymes its the only thing that I've continued to order....and last night I ordered 2 more.

I ran out so I had an idea. :)

I bought distilled water, heated it up in a big bowl and put epsom salts in it. Then I soaked my feet in it while I was on the computer. It kept me warm! I'm gonna start doing that more often. :)

I also drank something other than water for the first time in forever. I bought a bottle of martinellis apple juice. I got addicted to it really quick....I drank the whole bottle in a few hours. I want more now. :ph34r:

Anyways, I didnt get a bad phenol reaction so I'm pretty sure the epsom salts helped. Only thing is that I did end up waking up with a stomach ache and then "d". I think it was too much apple juice for me. :(

My mom's house is pretty much chemical free so I'll have to see how I'm reacting when I leave the house today. An overload of phenols always makes me hypersensitive. If I'm ok then I'll know that the epsom salts helped. :)

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