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Rachel--24

Omg...i Might Be On To Something

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I decided to take a deep breath and bite the bullet. I'd rather have help available if I need it rather than be stuck somewhere, too tired to keep driving.

I am glad you did Nyxie, that's a lot of driving and if you need help you will have it. Plus it will probably be nice to have the company, annoying as it might potentially get, at least you won't be alone.

Have a good appt, I look forward to hearing how it goes.

*edit- where do you find your avatars, they always make me giggle.

I actually asked my mom to not go into the room with me for my appt later today because I have decided I need to be able to have my appt with him and not be worried about what my mom thinks when I say something personal. (She's not very happy, but there is a reason for patient/dr confidentiality). ;)

So true Kassandra. You need to be able to have that support from your mom but also be able to discuss personal things with your Dr since it is your body and your life that everyone is dealing with here.

Ditto for what I said to Nyxie, have a good appt and I look forward to hearing how it went.

I'm just following along now... laying low. :) About a week ago I went to the naturopath, and we did some muscle testing about my liver detoxification (she didn't know anything about the information I brought to her *sigh* <_<). Apparently my sulfitization pathway is fine, along with the Phase I detoxification, but most of the pathways for Phase II are messed up. I've begun using a very small amount of a supplement that's supposed to support liver function (a lot of Bs... need to be careful there) and it's helpful with the hives, but the day after I take it I feel "wired", my typical reaction to Bs. :rolleyes:

I'm also having problems with nausea. :pukeygreenface: And I'm going to be calling my LLMD tomorrow about getting something for that.

Hello Birdy, thanks for the update on what you have been up to.

Sorry about the nausea, do you attribute it to anything in particular, anything new you are taking? Hope you get to the bottom of it.

Good news on the improvement of the hives. Hives are evil, I hate them. As Donna would say, stupid hives :angry:

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So true Kassandra. You need to be able to have that support from your mom but also be able to discuss personal things with your Dr since it is your body and your life that everyone is dealing with here.

Ditto.

Birdy,

Hope the b's work for you and glad to hear the hives are better.

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Hey you all. I'm dropping in for expert reaction from all you long-time wise warriors...

This is a protocol for unblocking the methylation pathway that does not directly involve chelation but does involve detoxing through specific supplements. It's borrowed from Dr. Amy Yasko who is a leading practitioner of biomedical treatment for autistic kids and is now being used with some success with people with CFS.

Reactions?

http://phoenix-cfs.org/GSHMethylDeplTheoryJuly07.htm

Thank you thank you!

Florence

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My appt went well. I will write up an email soon, and I'll let everyone know when I send it. Some things are not so great, but he is really an amazing Dr. He gave me a lecture, LOL! It was so funny. ;)

He noticed my mom was in the waiting room, and asked if I wanted her to come in and I said no, and he laughed. :lol: I said it was more comfortable for me without her there. :)

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Hey everyone. I feel a little rusty today. My brother had a weight set next to my room, lots of rust on it so now everything I eat taste like metal. I told him to get rid of the bar. We bought a new one. If it's not one thing it's another. :rolleyes: Rust!! I hate's rust.

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Kassandra,

:lol:

I'll be waiting for whenever you have time to get the write up done. :)

Lisa,

I'm sorry. :(

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This is a protocol for unblocking the methylation pathway that does not directly involve chelation but does involve detoxing through specific supplements. It's borrowed from Dr. Amy Yasko who is a leading practitioner of biomedical treatment for autistic kids and is now being used with some success with people with CFS.

Reactions?

Hi Florence,

I think that unblocking the pathway can be very challenging. Although this protocol may be successful for some...it wont be for everyone...as is the case with most treatments.

It was mentioned in the article that some patients have had serious adverse effects. Since we all have differences in biochemistry and genetics...I agree that any treatment such as this should be carefully monitored by a knowledgeable Dr./practitioner.

However, it is now clear to me that restarting the methylation cycle after it has been blocked for extended periods, particularly in those PWCs whose general health has become quite debilitated, or those who have certain respiratory, cardiac, endocrine or autoimmune conditions, can present some serious challenges and hazards. I suspect that there is still much more to be learned about possible adverse effects of applying this treatment approach among the very heterogeneous CFS population, and this work properly lies in the province of clinicians.

That being said, I do think that looking into possible dysfunction in the methylation or sulfation pathways can be an important step in recovery.

I also think that when these pathways are blocked (as they often are in Autism) genetics as well as heavy metals play a huge role.

This hypothesis proposes first that in order to develop CFS, a person must have inherited genetic variations (also called SNPs or single-nucleotide polymorphisms) in a combination of certain genes that code for enzymes and other proteins associated with the methylation cycle and related pathways.

The hypothesis further proposes that the person must also be subjected to some combination of a variety of long-term physical, chemical, biological or psychological/emotional stressors that lowers glutathione levels to the point that a block occurs in the enzyme methionine synthase in the methylation cycle, in response to the oxidative stress that is inherent in glutathione depletion.

The formation of this block is aided by the presence of the inherited genetic polymorphisms. This lowering of glutathione levels also simultaneously removes the normal protection that glutathione provides to vitamin B12 and allows the accumulation in the body of toxins that can interfere with the utilization of vitamin B12, mercury perhaps being the dominant one.

Clearly, glutathione is depleted in most cases of autism as well as other chronic illness. I agree that in most (if not all) of these cases there are genetic weaknesses in these pathways and the assaults from heavy metals such as mercury (as well as other toxins) can ultimately shut down these pathways so that the problem cannot be resolved until these things are addressed.

Since mercury is well known to cause enzyme dysfunction and to displace essential minerals in ways that other heavy metals cannot...I think that things can get quite complicated when trying to correct these metabolic imbalances....as long as mercury is remaining in the body.

I definately think that these problems can be overcome but I think its something that has to be done under the care of an experienced Dr. in order to avoid setbacks or serious complications along the way.

My own opinion is that all of this is very complicated and we should try to have the best understanding of where we have weaknesses and why...and then try to do whatever is necessary for our own situation to try to support those weaknesses.

I think treatment would differ greatly for each and every one of us...as is already apparant here in this thread.

Its definately worth looking into.

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Nah, I KNEW what it would be like before I went to the page, lol. I was just hoping my brain could handle it today. Dr. S and Anna both want me on molybdenum, so I've been taking it for nearly a year now.

Now, if I could only read that page and understand how it's been helping me. :lol:

Oh, you and me both! I really want penne pasta with meat sauce! I have some in my cupboard (the penne (tinyada), not the meat sauce, lol), but the darned stuff makes be blow up like a hot air balloon!

I had pasta with meat sauce last night (of course my meat was lamb and not beef) Tinkada kills me- anything brown rice kills me) I used buck wheat pasta

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Omg the girls and I have been up all night in the bathroom. I think we have salmonella. I have never felt this bad in my life. I would take eating gluten over the pain I am in. We are going to the dr later to be tested. So if you all dont see me in the next few days, you will know they put me or the girls in the hospital. All i know is im so dehydrated that im scared they will put me in.

paula

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Omg the girls and I have been up all night in the bathroom. I think we have salmonella. I have never felt this bad in my life. I would take eating gluten over the pain I am in. We are going to the dr later to be tested. So if you all dont see me in the next few days, you will know they put me or the girls in the hospital. All i know is im so dehydrated that im scared they will put me in.

I hope you all don't have to be hospitalized. We'll be thinking of you until you are able to let us know what's going on.

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Hey everyone. I feel a little rusty today. My brother had a weight set next to my room, lots of rust on it so now everything I eat taste like metal. I told him to get rid of the bar. We bought a new one. If it's not one thing it's another. :rolleyes: Rust!! I hate's rust.

So that explains your rusty mood on MS :lol:

Sorry you feel rusty Lisa and that it has made you sick :(

I had pasta with meat sauce last night (of course my meat was lamb and not beef) Tinkada kills me- anything brown rice kills me) I used buck wheat pasta

This reminds me about checking into buckwheat, it's not technically a grain but a grass I think?

I'm not going to eat grains for a while, which really for me has only been brown rice, so no brown rice or rice products.

What brand of buckwheat pasta do you get Mia?

Omg the girls and I have been up all night in the bathroom. I think we have salmonella. I have never felt this bad in my life. I would take eating gluten over the pain I am in. We are going to the dr later to be tested. So if you all dont see me in the next few days, you will know they put me or the girls in the hospital. All i know is im so dehydrated that im scared they will put me in.

paula

Oh no Paula. I was thinking about you yesterday and I was going to ask what the latest on the water situation was and how you guys were doing...

I'll be thinking of you guys and let us know how you are when you are able.

Hi Florence, I read the link. It sounds promising in theory, but it didn't really spell out the protocol, at least what I saw.

The thing that concerns me is if it is a one size fits all treatment.

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Several weeks ago I had problems with my IV and it was moved to the top of my wrist area. The blood clotted and the IV stopped but at that point I was just about finishned anyway. Since then it still feels sore there....like a bruise. :huh:

The vein feels kinda big and hard...like its somewhat swollen and its tender...like a bruise. What could this mean?? I dont like the way it feels...I dont think it should feel hard...but it does. :(

Could it be permantly scarred or something? Or does it just take awhile to get back to normal..cuz I'm a slow healer and all.

this happens when it infiltrates and the vein collapses- basically air gets into it. Its good ti ice it right after to prevent bruising but it will go away on its own

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So that explains your rusty mood on MS :lol:

Sorry you feel rusty Lisa and that it has made you sick :(

This reminds me about checking into buckwheat, it's not technically a grain but a grass I think?

I'm not going to eat grains for a while, which really for me has only been brown rice, so no brown rice or rice products.

What brand of buckwheat pasta do you get Mia?

Oh no Paula. I was thinking about you yesterday and I was going to ask what the latest on the water situation was and how you guys were doing...

I'll be thinking of you guys and let us know how you are when you are able.

Hi Florence, I read the link. It sounds promising in theory, but it didn't really spell out the protocol, at least what I saw.

The thing that concerns me is if it is a one size fits all treatment.

Julie-

Im pretty sure its EDen- But be careful they make one that is bucleheat and wheat mix and the other is pure buckwheat- of course that one is more expensive!! But I loke it its a little weird but once I add all my stuff to it it tastes good. It would be good for ou becasue besides millet it is the onl alkalizing grain and I know you ahve had a problem with reflux.

I did not know you had had esophageal spasms. I used to haevt his . I had all these tests done and actually had 2 esophogeal dilations done to stretch my esophogeus!! Of course this was when i was telling them my throat felt like it was closing up when I ate certain foods and they never thought to test me for food allergies. Those smart doctors!!!!!!!!!

Julie b the way I totally owe ou a pm I have just been really out of it. I think I need your telelphone # becaus eI find typing so hard sometime and I always have so much to tell you

Miamia

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Ya thanks im on Yaz, which has a direutic in it, the progesterone is derived from spirolactone, not testestorone like other pills. I wounder if the direutic is helping or the pills hormoes itself. Its so hard to tell, but for now, Im so glad i stumbeled upon it. My jaw pain and headaches are almost completely gone!

It happened immediately. And that sucked, this is so much better.

with kindneys tho, I remember when I had protein in my urine a coupple times, the 24 hour came back normal though. But I have noticed that I get really tight swelling in my legs and I gain a lot of water weight, espically in my abdomen, this was a new symptom about three months before the birth control. I had the most henious edema and swelling in my face in the morning, my roomates boyfirend slept over he and saw me when I woke up and said.. ohh my god you look chinese!

That was kind of a turning point for me. The swelling was out of control, getting worse by the day.

I still have a abdominal swelling, body wide water retention, and sometimes painful tightness and swelling in my hands arms and legs, espically after doing heavy ecercise.

I saw this http://health.discovery.com/fansites/myste...-diagnosis.html program on discovery health, MYSTERY DIAGNOSIS on mon at 10pm east coast time,,, I love it, im such a fan.

this lady was gaining and loosing 10 lbs a month with each cycle, from edema, she ended up having amylodosis. sp?

Interesting dx, they treated her with chemo, and stem cells. I love this show. Its only a matter of time before any of us makes our debut. LOL

I wish a dem would get in the white house so stem cell research can take place. it reall works!!!!!!!!!!!!!!

ranting....

how is your edema doing? have they figured out what is causing it or how you can treat it?

do you every take diruetics?

Im going to the university to get tested for endometriosis, of whatever, ive had a cyst in the top of my cervix near uterus and pain on and off for about a year. I have my first appt this friday, ill let you guys know how it goes.

Might as well take advantage of all the health insurace I get through my school...

Ill be requesting 800$ hormone pannels. Its funny tho, it does seem like the most help I have gotten, or answers at least has been at the gyno. weird,,,I want to get my adreanals tested too, for atch, and cortisol, as well.

I take adderall, and that stimutales the adrenals big time,,, whoa

hope you are feeling well....

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this cracks me up,,, im thinking back to what doctors have said to me over the years,

respected rhumatologist- you are what we call, the "worried well" you can take all the blood tests in the world for the rest of you life and you are not going to find anything-quote

my family doctor- "you are a hypochondriac, "

"I think you have an eating disorder," "I think it would help to talk with a therapist"

endocrinologist at OSU- " I don't know whats wrong with you, we can only dx when it shows up, so far anything else is considered experimental, you can try to enter yourself into an experimental study"

Nurse- "There's nothing wrong with you, you look fine."

Ear nose and throat doctor- "I don't know if you have Lupus or if you want to have Lupus, but I can do sinus surgery on you to help with the headaches, it helps some people."

...

Thats my favorite one!!! lol the guy was actually pretty cool.

various doctors... and friends and family, "its prob

stress, your not eating right, or getting enough sleep, you must be doing something wrong, don't complain...you look fine, heavy metals couldn't be causing this, they would have left your system by now...its the root canals that helped, and dental cavities that were causing the jaw pain in the first place...if you were poisoned, wouldn't everyone who took that stuff be sick too, it couldnt still being sold in health food stores.

I guess coming from a family of doctors and nurses doesn't help, you have to tough it out. My grandfather died of non Hodgkin's lymphoma and never once complained, he was always positive, even up to his death. He was a dentist...I mean the whole family has had issues and just sucks it up, my aunt had a complete hysterectomy and didnt want to take hormone replacement, so now she has to get a hip replacement at age 54. Now she feels like doctors arent listening,,,because shes in pain, and Shes also a nurse.

My grandfathers suck it up and be positive attitude turned out to be an impossible standard to live up too.

My mother even admits that even when her marriage failed between her and my father and he was being abusive, they didnt believe her. She did that to me a lot. She said that him never getting upset, was in someways, detremental to her, she wished that he would have been more discerning, or critical, its good and bad, but I think that its somthing I have to deal with, at least understand my mom's reactions to things. My mom tends to be more critical and skeptical, I think its because she wants to protect me...

What are some of your favorite doctor or other quotes...?

I believe all of you, when you say you believe something is wrong with you, in your heart, how could anyone not. Thats what holds us together, as a support group, the belief in one another, and that we can figure it out together better than we can when we are alone and depressed in our rooms crying... lol

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Hi Rachel,

I know that you do not use B complex,but could not find from your test if you checked this by Bioset?

statiscally,how far things that test posive in Bioset can be tolerated by your system?

thanks Elisabet

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Well! Wasn't that interesting? Hmmmm.....

Managed to find someone to go with me to help with the driving. More on that later.

Got all my test results back. Still trying to figure out what to make of them. Been googling various tests to find out what exactly they mean.

Apparently I'm not producing many antibodies. Even to things I should be. The doc thinks that I either have one heckuva immune system that zaps everything before my body has the chance to produce antibodies, or my immune system is tanked and I can't produce antibodies.

I did have reactions on a couple of tests.

Igenex WB: IgM - 18+, 41+, 83-93+. IgG 41+. That's it, just weak positives. The WB I got through MDL was stronger. Not more positive, but more bands showed up. Oh, well.

EBV IgG 1.45H (0.0-0.9) So I have that, but a low infection.

HHV-6 titre: IgG 1:40H (1:10). Shows a past infection.

All other bacterial and/or viral testing was negative.

Other test results:

Immunoglobulins (G, A, M)

IgG 750 (694-1618)

IgA 84 (81-463)

IgM 172 (48-271)

CK, Total 78 (<=165)

ESR, Westergren 3 (0-20)

Cardio CRP - 7.8 (3.1-10.0 High cardiovascular risk)

IgG Subclass 1 - 297L (382-929)

IgG Subclass 2 - 454 (241-700)

IgG Subclass 3 - 57 (22-178)

IgG Subclass 4 - 9.6 (4.0-86)

Rheumatoid Factor <7 (<14)

EBV Capsid EB (IgG, M) - .36 (0.0-.90)

MMH 143 ( 87-318)

Homocysteine 7.7 (5.4-11.9)

ANA - negative

It looks like a lot of things are on the low end of normal. I'm trying to find out what the optimal ranges are for them, if there are optimal ranges. Any insight you folks could offer would be most welcome.

So anyway, after all that, they've decided to treat me as if I have babs and bart anyway, in spite of negative testing. I start Levaquin and Malarone today. They also switched my doryx to mino because it's easier on the tummy and warmer weather is coming so (hopefully) I'll be outdoors a bit more.

Forgot to ask some of the questions I'd written down, so I'll be faxing those over today.

Doc didn't think there would be a problem with my pork allergy and taking my thyroid med, so unless I start really reacting to it, I'm going to continue taking it.

Oh yeah. And they want me to get an MRI. I mentioned that the olfactory hallucinations were back, along with pain/pressure on the top of my head. Want to make sure I don't have any swelling going on in there.

Got a script for monthly bloodwork. Have to figure out where to get it done now.

Ok, back to the driving "help". Still trying to figure out if it was worth it or not. I ended up driving to the doc's office (nearly 4 hours). Was exhausted after the appt (heck! I was exhausted half way through the drive), so my helper drove... for about 2 hours. Then he couldn't keep his eyes open anymore and I ended up driving the rest of the way home. Grrrrr! Add in a high annoyance factor and it makes me wonder if I'd have been better off going by myself.

This morning, I'm still exhausted and in pain. More than usual.

Going to switch over to mino today. Will be adding in one of the new meds every three days to see if I have an adverse reaction to them. Next will be the malarone and, finally, the Levaquin.

The doc said if I have a positive reaction to the Malarone/Levaquin, she'll be switching me to Mepron. Oh goodie! Yellow tempra paint. :P:blink:

I've already been warned about the possible herx (thanks Carla!). Not looking forward to going through that, but it's the only way I'm going to get better.

Edit: Oh yeah! Forgot to mention. I actually had a fever yesterday afternoon! It was 98.9! Don't think it's been that high in years!

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Sherry,

How many mg do you take of the Naitokkinase?

April

I'm taking 80 mg at supper and bedtime (Jarrow NattoMax), and can go up to 240 mg for each dose. The lower dose seems okay and it is spendy so I might stay there. :)

Sherry

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Paula, Nyxie, sorry for the rough times.

I'm doing okay, busy with guests for 3 days, out of town and 9 hours of travel tomorrow. This is a must due to govt regulations for renewing my visa. Just hoping to keep my meds straight and not get too worn out.

More later and hi to all. Hey Jin! Glad to see you!

Sherry

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Rachel, thank for the scientificness. Haven't processed so I copied and printed hoping to take my time and think on the bus tomorrow.

I think that what I can handle is fairly consistent, at least the ART over three months (3 times) was, and my experience is. There may be some ebb and flow but it has been hard to track. Like with the lima bean soup, I know I am allergic somewhat. If I test via diet and track I'll have minor symptoms at least. But sometimes I'll have strong symptoms. Some foods I know to only eat once in awhile and usually they are fine.

My allergist wrote back and said he thinks it was allergy overload due to the season, especially if the lima bean soup was prepared in the same way I have. It was the same except I used lamb as the meat flavoring as Dr. E said no pork.

I just wish I could figure out which enzyme system was weak. I'm curious if in your reading about these several pathways, Vitamin D is mentioned?

Sherry

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