Omg...i Might Be On To Something

[CarlaB]

Sherry, I have a good article, but I have to find it. I'll post it later.

Kassandra, that is right where I was (BMI-wise). I bet they are afraid of you losing more or struggling to much to maintain. I had a sharp drop like you did, but it only happened the one time.

[dlp252]

5 lbs is a lot on a 5'4" body. It will make it so none of my jeans fit...and that sucks.

Yes, it certainly does!

Am I the only one who can't lose weight around here, lol? Sheesh...I've GAINED weight and can't get rid of it.

I'm slight depressed, lol. My appointment with the surgeon next week was rescheduled to Sept. 15...grrrr I HATE waiting! Sounds like this guy is really busy which doesn't give me confidence. They actually were going to give me an appointment a few days later than this, but they squeezed me in after I told them it was for a precancerous growth and that my doctor gave me two names because of the type of surgery it was. Apparently both doctor's schedules were crazy.

Then, I saw my podiatrist yesterday. The good news is that I can drive...I have a hair appointment which I finally get to keep, yay, today and I can drive myself! Woohoo. I am also cleared to go back to work on Tuesday. Not especially excited to work, but it will be nice to get off my butt.

The not so good news. I can't exercise. He said only swimming and maybe biking. I can't swim and don't own a bike. I've been doing weights for the upper body, but I really need to start working the lower body somehow. At least there are some stationary bikes at work I can use.

More not so good: I have to start wrapping my foot again. It ached so badly last night that I couldn't sleep. It woke me up around midnight and I couldn't get back to sleep. It hurt so badly that I actually cried a bit. Finally took some tylenol, which didn't seem to help at all.

More not so good: since my foot is still really swollen and discolored, he doesn't want me to wear a regular shoe yet. I have to work up to it slowly, so will start with a few minutes a day, gradually increasing the amount of time in the shoe so that in a few weeks I'm mostly in a regular shoe. I can't drive with this boot on so I'll wear a regular shoe to drive in then change into the boot for work and walking around. I guess I should have requested a bit longer for my temporary disabled parking placard. Who knew.

He found a stitch that hadn't dissolved and was starting to cause problems, so he spent a good amount of time trying to dig that out. Didn't hurt though, so that was fine.

Back to good news: whatever bug I had seems to be gone. Yay!

[mftnchn]

Donna, I was gaining weight before so easily it was like breathing it on. Must have been related to gluten and carb maldigestion. Did you lose on the SCD when you did it?

Yay on the driving!

The foot pain sounds really bad. Maybe a mini tramp to help lymph flow?

Sherry

[AndreaB]

Donna,

That is a mixed bag isn't it? I'm sorry about the appointment reschedule. Hopefully this appointment will go smoothly and you won't have a long wait for surgery.

The foot pain doesn't sound like any fun......especially when it interferes with sleep. Hoping it is just from the doctor digging around and you'll be back to feeling good real soon.

Yay on the bug being gone!

[aprilh]

Am I the only one who can't lose weight around here, lol? Sheesh...I've GAINED weight and can't get rid of it.

I'm in the "can't lose weight" category too. I need to lose about 10 pounds. The sucky thing is when I went on the Candida diet 2 years ago I lost about 20 pounds in a few months. I lost it fast. Then over time I slowly started gaining and have gained about 10 pounds back.

That's why I am thinking the SCD diet might be good for me. I ordered the book.

Sorry about the foot and the surgery!

[nora-n]

Kassandra, I used to be same height (I am 1-2 cm shorter now) and I now weigh two kg more than you. I weighed 55 kg for ages up til my mid-30's. That was normal weight back then, now young women that height weigh 5-6 kg more here.

If your norm is 50-51 kg over there, then it has gone opposite of ours here...

I gained weight with hypothyroidism afterwards. In some 3-kg-steps, until I weighed at most 73 kg. Did not lose any weight until the gluten intolerance thing and going gluten-free. (simply lost 20 kg)

I think that the hypothyroidism was triggered by gluten, and I got this excema in the scalp and behind the ears and in the ears just before going really hypo. Excema really must have been DH and it is gone now and I get tiny bumps if glutenened a little bit.

Thing is, when celiac or gluten intolerant, one does not assimilate enough nutrients from the food because of the intestine damage, so the body reacts by asorbing as much as possible and one gains weight from eating gluten....about a third of celiacs are said to be obese according to articles in the bmj.

I have no problems holding weight off after going gluten-free now, I can gain weight by eating chocolate on a regular basis, plus nuts. I can lose it again by substituting the chocolate and nuts with for example raw carrots, or raw squash if I want to munch on something, plus working. Before I always gained weight when I did more physically.....

I do not know what you can eat more of to gain a little bit of weight, maybe nuts work for you, plus chocolate if you can tolerate chocolate? (lots of oxalates, but I take extra calcium and magnesium then)

I did some kinesiology testing , and walnuts are better for me than for example almonds.

nora

[dlp252]

Woohoo...got my hair done and didn't crash! Driving went well and my foot only hurt slightly. I think it was a good idea to take these short trips over the next few days...I think it would have been pretty uncomfortable to start out with a trip to work, which is 30 minutes one way. I think my foot will adjust and all will be well by Tuesday.

Did you lose on the SCD when you did it?

...

The foot pain sounds really bad. Maybe a mini tramp to help lymph flow?

I think I lost a couple of pounds in the first week, but nothing after that. I also lost about 2-3 pounds doing an elimination diet about a year and a half ago, but nothing after that. THe most weight I've ever been able to take off with with a low carb anti candida diet. I just can't seem to get myself back on it even though I know I need to for so many reasons.

I've been faunching to do a little bouncing on the tramp, but I've been afraid to try to get on it. I think once on it'd be okay, it's just trying to get on and off with my foot that worries me. The one and only time I fell off the thing was actually when I was stepping off it. :rollyeyes: I've been massaging my foot today so I'm hoping that will help. So far the aching isn't bad today, so I'm hoping he just stimulated and irritated the nerve endings yesterday setting off the pain. The nerves are kind of "excited"...I've been noticing that since the surgery was done.

[confusedks]

Thanks for all the suggestions. I have decided that I'm going to slowly increase my calories. I'm starting with just adding more protein to my breakfast...that's all for right now.

Then I will also be able to gain weight when I start working out, I'll gain muscle weight. My whole thing is, I don't want to gain fat...I want to look toned.

So, I'll keep you all updated.

[Rachel--24]

Just popping in to say hi.

Not much to add right now.....but I've been reading along.

I've been busy mostly focusing on learning/understanding the methylation cycle.

I made some big dietary changes since I have a much better understanding now of why the reactions are occuring. Other than that....nothing new.....just waiting for my appt. with Dr. T.

I'm still not thrilled about the long wait. I think its pretty evident by now that the problems are caused by methylation/sulfation defects. Every Dr. I've seen over the past 2 years has acknowledged this to some extent...even though they may not have had alot of experience with improving (or getting around) these blocks.

I understand that I'm a new patient to Dr. P....and so I do understand that he wants to send me to someone he trusts....to take another look at the "big picture".

Normally, I would be all for it......but normally I wouldnt be waiting 2 months to get in with someone. So this part REALLY sucks.

I feel like over the past 2 years I've had enough testing....and enough doctors saying the same thing (regarding Lyme and other issues)....that I just want to get on with it now. Know what I mean??

I seriously dont have any symptoms that are "randomly" occuring. ALL of my symptoms are caused by the block(s) in this pathway...making it virtually impossible for me to handle the foods.

So yeah....other than being stuck on a super restricted diet I'm pretty darn normal now!

I even have the chemical sensitivities pretty well under control. I know what I can eat without making things worse and I know what foods I can "indulge" in when I want to...and what symptoms I'll have to deal with if I choose to do so. I'm never "caught by surprise" or hit with bad days, no unexplained symptoms or anything like that.

I feel like I'm finally enjoying life (as much as I can at this time), I finally have a handle on this and I finally know pretty well whats going on....and I "sort of" know what needs to be done to correct it.

I think I've been VERY thorough as far as investigating Lyme and everything else....despite not having any symptoms which would lead me to believe that its a major factor.

Everything seems to "fit" and it all makes really good sense....so at this point I think I'm just ready to move forward (and at a much faster pace).

In case you couldnt tell I'm impatient....I wanna go to Germany!

I think that its not uncommon to have these deficiencies in the cycle....and it will definately cause health issues, intolerances, immune dysfunction, etc. In my case it seems like there is MAJOR bloackage....so theres not much room for playing around with my diet. I'm pretty much "stuck" until they start to get things moving.

Theres no way they can "jumpstart" the methylation process without first getting the sulfation issues worked out. That much I do understand pretty well. I'll definately get worse if things arent done in the right order. Thats why I'm really trying to understand all of it.....because I know where I have issues (judging by the symptoms from certain foods) and I want to be able to make sure things arent done "backwards".

I think I'll be tolerating alot more foods once we start addressing the sulfation deficiencies/blocks. This is most likely the most impaired part of my pathway.

I'm just mostly using this "waiting period" to test certain foods because the reactions are what has given me the most clues during this whole process. I think I'd be pretty lost if it werent for at least understanding that part of it.

I guess right now I'm kind of bored....so I'm just playing with the foods a little more.

I think I have like 5 more weeks of waiting. Everyone is asking me why its so hard for me to wait for my appt. because 5 weeks goes by so fast....you've been dealing with this for so long already whats another 5 weeks...be patient...blah...blah...blah.

The point is....for alot of that time I wasnt READY to move forward because I felt sick, I wasnt feeling good anyway so its not like a vacation was even a possibility in my mind. Actually, everything seemed pretty out of reach for a long time!

Now its like all of this stuff is almost within reach.....its like I can almost remember what its like to be "normal"...I can almost start making plans...I can almost imagine myself actually DOING all this stuff. I can almost be myself again.

But yeah...I still have to wait for treatment.....and then I have to pray that it works.

I have a good feeling about it though...enough that I'm actually feeling like I'll REALLY be flying to Germany one of these days.

I just really needed to vent a little right now.

[aprilh]

Rachel,

Have you figured out *how* to correct the methylation/sulfation issues?

I can totally see how the methylation cycle defencies can cause the problems, but how to fix......Plus if you don't know exactly part of the cylce is blocked...then how do you know what to treat?

Anyway, I am sure you'll keep us posted when you do find these answers.

[mftnchn]

I've been faunching to do a little bouncing on the tramp, but I've been afraid to try to get on it. I think once on it'd be okay, it's just trying to get on and off with my foot that worries me. The one and only time I fell off the thing was actually when I was stepping off it. :rollyeyes: .

I've heard that you can have someone else bounce, even sit on it and bounce, and put your feet on it while they are doing it, and it is very beneficial for you--just even doing that much.

Sherry

[mftnchn]

Yes, keep us updated Rachel with your discoveries.

BTW my SAM/SAH results were okay according to my LLMD, and he said adults are almost always normal.

Sherry

[mftnchn]

I'm going to be transitioning for a few days, .likely won't catch up for 3-4 days.

Sherry

[tabasco32]

But yeah...I still have to wait for treatment.....and then I have to pray that it works.

Rachel I will be praying for you. You will get their.

[tabasco32]

Guys,

Since I haved moved into my grandma's house I have become extremely sensitive to everything, especially perfumes. My ears itch and the one on the left is slightly plugged. Any advice, anyone? I wonder if it's the mold from the swamp cooler, but it's so hot. It was 107 today with 14% humidity.

Oh by the way does anyone here drink POM juice of any sort? I know they make pomegranate and stuff. Well my sisters friend Cisco was working for that company for a short time before they layed him off.

She told me when we were at Whole Foods today that he said he saw some people in like biohazard uniforms at the factory in a room.

He asked someone what they were doing in their and they told him it's where they keep the mercury.

They put mercury in the juice to keep it from going bad. People that are working their are getting sick. So don't drink POM.

I hope it's okay to say this.

Also I joined choir at church and Sunday is my first time to sing in front of over 150 people. I'm a bit nervous. Pray for me that I will do okay.

[AndreaB]

He asked someone what they were doing in their and they told him it's where they keep the mercury.

They put mercury in the juice to keep it from going bad. People that are working their are getting sick. So don't drink POM.

We've had that before but not alot. That's supposed to be real good for you too.

Don't know what to tell you about your ears.

Have fun on Sunday. You'll do great!

[dlp252]

I just really needed to vent a little right now.

Ha, pretty mild vent IMHO, lol! You're entitled, vent away!

Also I joined choir at church and Sunday is my first time to sing in front of over 150 people. I'm a bit nervous. Pray for me that I will do okay.

It gets better! The first time I sang on stage with the choir my knees wouldn't stop shaking. We had probably 500-600 in attendance, and we had to sing at two services. I got over that pretty fast, then joined a small ensemble...THAT was REALLY scarey, lol. But even that is getting better. I'll pray for you anyway though, lol! Just keep reminding yourself that you are one of many!

[confused]

Rachel,

I agree 5 weeks is a long time to wait, especially when you now have an goal to go to germany.

I have been following along to, just havent felt like posting much lately. LIfe is really busy with 5 kids in school and all their activities and just life in general lol.

Ive been keeping an long of all my symptoms and what I have been eating and im trying to figure it all out.

I will post more, but have to take the kids to an event today in an hour and none of us are even ready lol

paula

[Rachel--24]

Rachel,

Have you figured out *how* to correct the methylation/sulfation issues?

I can totally see how the methylation cycle defencies can cause the problems, but how to fix......Plus if you don't know exactly part of the cylce is blocked...then how do you know what to treat?

You do need to have a good idea as to where there are weaknesses in the pathway in order to know how to proceed with supplementation.

We do have a pretty good idea about one enzyme...but we will have more answers with the last test I did.

So we're pretty certain that there's a problem with CBS.

CBS initiates the trans-sulfuration pathway, converting homocysteine in to cystathionine and its downstream metabolites. This is the most important Methyl Cycle defect and is present in 90% of the patients who we have tested.

I think treatment also depends on what is causing the problem to begin with. Some defects in the pathway may be caused by metals, or by deficiencies, or the block may be genetic. Sometimes they have to go around the block (if its a genetic problem) and use an "alternative route" to get the cycle going.

There are genetic codes which can predispose for a specific disease....but the methylation genetic defects are different....they dont set you up for a specific disease but they do make you more susceptible to toxicity and/or infection.

Methyl Cycle Defects are different. None code for a specific disease state, but all play a role in predisposing you to disease in general. The more Methyl Cycle Defects present in your genotype, the greater is your susceptibility to toxicity and infection, and the greater will be your risk for these (usually) age-related degenerative disease states that plaque our society today. These disease states are usually age-related (but are occurring in you earlier than in others) because it takes time for toxicity to build up within you, to overcome the still intact defense systems that are trying to defend your physiology. On the other hand, a little bit of toxicity during a vulnerable time period can do a lot of damage to an individual with impaired Methyl Cycle defenses.

So far this new doctor hasnt recommended having the genetic testing done. If he mentions it...I'll do it. Its pretty expensive but I think it would be worth it. Dr. Amy had mentioned it in the past....but she also said that sometimes its helpful and sometimes not. I think its important to have a doctor who's really familiar with interpreting the results....and I dont know if my new Dr. uses the genetic test or not. I will probably find out at my next visit.

[Rachel--24]

Rachel I will be praying for you. You will get their.

Thanks Lisa.

Guys,

Since I haved moved into my grandma's house I have become extremely sensitive to everything, especially perfumes. My ears itch and the one on the left is slightly plugged. Any advice, anyone? I wonder if it's the mold from the swamp cooler, but it's so hot. It was 107 today with 14% humidity.

Awwww...I'm sorry things have gotten worse for you at your grandma's. If there's mold its definately gonna be putting stress on your system. What is the swamp cooler?

Good luck with choir on Sunday!!

You'll do GREAT. I'm glad you joined....I'm sure you'll enjoy it.

[Rachel--24]

Rachel,

I agree 5 weeks is a long time to wait, especially when you now have an goal to go to germany.

Yeah Paula....it feels like a lifetime!!!

I have been following along to, just havent felt like posting much lately. LIfe is really busy with 5 kids in school and all their activities and just life in general lol.

I thought life was supossed to be less busy once all the kids are back in school??

[Rachel--24]

Ha, pretty mild vent IMHO, lol! You're entitled, vent away!

Thanks Donna.....I guess it was pretty mild (in comparison to previous vents ).

That was coming at the tail-end of my "venting session". It started the other night when I was crying about it (yes REAL tears!).

My mom was kind of surprised because she hasnt seen me crying over any of this in such a long time. It just kind of came out of nowhere.

But yeah....I think its because I feel good most of the time and I just want to get past the food restrictions so that I can actually DO STUFF! I wont continue to feel good if I have to stray from the diet restrictions....and its not possible to travel and eat safely at this point. I'm just stuck right now.

[CarlaB]

Guys,

Since I haved moved into my grandma's house I have become extremely sensitive to everything, especially perfumes. My ears itch and the one on the left is slightly plugged. Any advice, anyone? I wonder if it's the mold from the swamp cooler, but it's so hot. It was 107 today with 14% humidity.

Oh by the way does anyone here drink POM juice of any sort? I know they make pomegranate and stuff. Well my sisters friend Cisco was working for that company for a short time before they layed him off.

She told me when we were at Whole Foods today that he said he saw some people in like biohazard uniforms at the factory in a room.

He asked someone what they were doing in their and they told him it's where they keep the mercury.

They put mercury in the juice to keep it from going bad. People that are working their are getting sick. So don't drink POM.

I hope it's okay to say this.

Also I joined choir at church and Sunday is my first time to sing in front of over 150 people. I'm a bit nervous. Pray for me that I will do okay.

I'm thinking that your friend must have misunderstood .... that just makes no sense, especially since they say there are no preservatives in the juice.

Good luck on Sunday. Practice where you'll be singing, then it will be natural to sing there. Practice there, get there early, then it will just be normal and comfortable.

I thought life was supossed to be less busy once all the kids are back in school??

Uh, no. It was easier in many ways when I homeschooled ..... at least it was all done on my schedule.

[CarlaB]

One of our rentals is vacant and we had someone applying from Guatemala. I didn't know where he was from, but my husband told him to call me on the phone because I spoke Spanish. Well, I hardly understood a word he said and was a little upset that my Spanish was so rusty.

We met him at the house today and he brought a friend (also Guatemalan), who speaks a little English. I asked them where they were from and when they said Guatemala, I wasn't so upset about it, LOL. It's like someone from Boston talking to someone from Alabama .... BIG accent difference between Guatemala and Mexico.

At least I could speak Spanish to him, then his friend could translate his Spanish into English for me, LOL. I never understood a word he said.

I've been listening to German tapes for my upcoming trip to Germany. Adam thinks is funny .... he says it's not normal to try to learn a language when you are only spending three weeks there! Well, I don't plan on learning it, I just want to know some basic phrases. "Where is the toilet?" would have come in quite handy when we were in Russia, LOL.

[nora-n]

Hi, the german and english languages are pretty close, and nglish has a lot of norse in it (I am in Scandinavia) (I grew up speaking german and norwegian and german and norwegian, back and forth several times

Of course it is useful to learn german, and maybe to start reading some german webpages and forums. I foloow some german forums (thyroid) and have browsed ssome other forums, like the pyroluria forums. Wwhat kind of forums would have stuff regarding your treatment? I can browse it for you, it might be a little interesting for me, I am not that far away.

About Bamberg, I was some days in Parsberg, and we drove around on the small roads, and some american military vehicles came and some of them were rolling bridges, they just folded up and drove around....funny things.

That part of Germany was very clean and neat and they had signs outside all butcher shops that said which local farthe meat came from. They had some meat scandals in the past so customers want to know where the meat comes from. The are very well known for the good food and good living in that part of Germany.

We bought some traditional dresses for me in a supermarket or outlet for that kind of clothes, it was much cheaper than in Austria. (Dirndl)