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Rachel--24

Omg...i Might Be On To Something

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Carla,

Yay on making it to the gym! :D

Sorry about the pain worsening again. Sounds like it's starting to be like a cold/flu type thing where you're feeling better in the morning and worsening through the day (not that you have a cold/flu, just the feeling worse as the day goes on type thing).

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Something wierd about me......you know last week when my neck and back were hurting so bad? Then I had that muscle cramp in the middle of the night.....well when I ramped up my water intake the neck and back pain went down by 70%. Not saying it went away completely but it was TONS better.

I went to the chiropractor this Monday and told her about that and she said ANYTIME there is chronic pain to double check the water intake. Sometimes just by going up on that - it reduces a lot of it.

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I found out its from CORN. I never thought about corn...but its in everything.

Something you may not have considered is that corn traces are even found in most meats b/c they feed cattle & poultry nearly 100% corn.

Please see the documentary "King Corn". It shows how most people have high concentrations of corn based markers in blood tests. Higher than any other signal. You will most likely need to avoid grain feed meats etc (b/c grain fed means "corn") and the other sources suggested in this movie.

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Yeah, Andrea, that's what it's like. That could be because the cytokines are what causes this feeling .... even when you have the flu ... it's the inflammatory cytokines.

I need to get my lazy butt out the door now and go work out. :D

April, I have heard that. A man I know with back trouble was told by his chiro to drink more water because if you're dehydrated, your back is more likely to hurt .... more cushioning between the bones helps (that's my totally uneducated understanding of it).

Hi U2, welcome to the thread! Rachel has thought of that at this point. :) Stick around, we have a good time here!

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Well, that's one thing I know I need to address...drinking more water.

Carla, the other day when you mentioned taking more glutathione, I thought to myself maybe that would help with my herx this week. It was not as bad as a month ago but had a lot of the fatigue going on for a couple of days. The morning it was the worst I decided to take an extra 0.5 cc shot of glutathione and see if it would help. It helped A LOT! I was due for the shot the next day for 1 cc, so I cut it back a bit to make sure I didn't get too much. But I will ask my LLMD next time about whether I can take more when I need it like that.

The other thought I had was doing your ecoffee later in the day?

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Hi U2, welcome to the thread! Rachel has thought of that at this point. :) Stick around, we have a good time here!

Ditto.....welcome U2. :)

Yup.....its just beef, beef and more beef for me....and only the organic grass fed stuff. ;)

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I'd look into getting a reverse osmosis water filter; my allergist said it is the best option and is very important for treatment.

I think you are going to need to go grain free. Keep in mind that if you are not able to absorb, you'll lose weight anyway.

www.pecanbread.com is SCD and a lot of ideas for dairy free because many of the autistic kids can't handle dairy. I lost weight initially on SCD but then have been holding steady now for several weeks. My guess is it is helping me start absorbing better. On SCD you eat more nuts which are very nutritious.

I had been drinking distilled water because it is supposed to help leach toxins out of your liver, I can get reverse osmosis at whole foods so will give that a try too....Just want clean water!!!

Once we settle down and buy a place a water purifier will be a must.

Had not considered that Grains could do further damage to my digestive track. That is a good point. I will finish up what little I have and cut them out from there. All the foods on the scd/gaps diets sound really good and nourishing.

I picked up some split soup bones will be making good broth this weekend.

Thanks for the link!

Also no I have not been tested for Heavy Metal Toxicity, could be a possibility I know I'm sensitive.

Looked into chemicals sensitivities and mcs. So these are good things to bring up with my allergist....although he does look about as old fashioned as they get.

Looking into more alternative doctors covered by my insurance, but may be out of luck there.

The most important thing sounds like avoiding as much funky chemicals as possible.

Thanks for the info I was so overwhelmed! There is just some much to learn about!

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RE:

"I found out its from CORN. I never thought about corn...but its in everything.

Something you may not have considered is that corn traces are even found in most meats b/c they feed cattle & poultry nearly 100% corn.

Please see the documentary "King Corn". It shows how most people have high concentrations of corn based markers in blood tests. Higher than any other signal. You will most likely need to avoid grain feed meats etc (b/c grain fed means "corn") and the other sources suggested in this movie."

Thats a good point too,

I try to buy organic as much as possible... (going into debt doing it, but feeling better)

Would get cheap meat here and there then after buying some "regular" chicken at Randalls I get it home and is soaked in sodium phosphate/nitrate or something like that...then doing some research they put MSG in everything, Soy in everything,...even spray it on our meat. I've been sold expired meat at HEB a couple times.

I'm not gonna even go into what they have started putting in lunch meat.

I just can't do it anymore, it makes me sick. Organic good, grass fed better.

sad but true, how toxic our world has become :(

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Well i started an basic diet on monday. I am only eating the basics: eggs, fruit, veggies, chicken and beef. Im not sure if im feeling better or worse right now. I am also working out an hour an day. Im going to stick to this for 2 weeks and see if it makes any difference on how i feel.

Hope its going well Paula. :)

Rachel,

Did you get an pink vest lol? I have never ever worn an vest lol.

Never worn a vest!! :blink:

Ok....now I know how you felt when you read that I'd never worn pink! :lol:

Another thing we dont have in common. :P

Its baby steps with the pink.....so I definately havent reached the point of actually purchasing a pink vest. Maybe next year. ;)

I wonder if somewhere out there....a pink vest is hanging on some rack in a store....or possibly on display? :huh: Maybe there is a mannequin out there wearing the pink vest that I'm not yet brave enough to purchase... :lol:

Vests are back in style!!! I still have mine from 1989. I knew I was holding on to them for something. :D

But I dont think I every owned a beret though.

Yup...I have a few old ones tucked away in the closet somewhere too.....but these new ones are definately cuter. ;)

Technically I dont think its an actual beret ....don't berets have that pointed thing on top? :unsure:

Its some type of beret-ish looking cap though.....probably way too big for my head but thats easily resolved. No problem there....I'll just eat some of the foods that cause my head to expand. ;):lol:

Did Dr. M. wear that vest all the time when you went for your visits Rach? How about his little pouch purse? I love those kind of small pouchy purses.

LOL....YES...I think he MUST have a whole closet just for the vests!! He's gotta be loving this "come back" that the vests have made. :lol:

...and yeah...the pouch purse too.....he's probably got a drawer full of those. :P

I've seen some pics of him online as well...and yup...he's not without a vest. :D

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Welcome Mslee! :)

I would think that if you are becoming increasingly sensitive to chemicals that you might want to consider looking into things that might be burdening your liver. These would be the most common factors in MCS (according to my doctors).

Heavy Metals

Toxic Mold Exposure

Toxic Chemical Exposure

Lyme Disease

In most cases there are usually several factors involved.

When detoxification is impaired (for whatever reason) we can then become more sensitive to chemicals.

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Rachel,

It sounds pretty hopeful then. :) Can't wait to hear all about it.

Thanks Andrea....I cant wait to TELL you guys about it!! It seems like the day is never gonna come!

Unless something changes...I'm looking at 19 more days. :rolleyes:

I think I might be the least patient person on this thread. :P

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I'm kind of jumping all over the place tonight....just randomly responding to stuff in no particular order. Thats just kind of how my brain is functioning today. I'm a little "jumbled". :wacko:

I think Christina asked me several pages back if I'm still using enzymes??

I'm still taking AFP Peptizyde (the brownies are not gluten-free/cf).

I sometimes go without them and dont suffer any noticeable symptoms. I've come to the conclusion that my issues are more related to the chemicals....all of them (natural and synthetic). Amines are a huge issue and the No-Fenol didnt really touch that.

I didnt reorder the No Fenol because right now I'm still too restricted and I'm not at a point where I can add high phenol foods in....even with the enzymes. Its kind of a waste for me if I'm not eating those foods anyway....so I'll try them again later if there is improvement with detoxification.

My #1 thing has been the magnesium sulfate cream. I have pretty amazing results with it...for some reason the baths didnt have the same effect.....but the cream does seem to make a big difference. I am noticebly more toxic when I dont use the cream.

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Its amazing to me how much info. is available regarding MCS....compared to just 5 years ago. :blink:

I remember that when I first started looking at this much of what I found was not helpful. Alot of it was suggesting that MCS was an "all in the head" type of illness. :rolleyes:

Also, there was not really any good info. as to specific causes....and most everything I read said that avoidance was the only known treatment.

Nothings really changed much with conventional medicine....its still not considered to be a "real" illness. However, it seems like there's been alot of progress made in other fields....so now they can link certain factors to MCS....like impaired detoxification, low glutathione, genetic vulnerabilities, toxic exposures, etc.

I think that like everything else....genetics is the biggest factor in who gets MCS and who doesnt. Genetic weaknesses and toxic exposures. Also, emotional traumas at a very young age seems to be a common factor in patients with MCS.

I think the same things would be factors (in some combination) in all chronic illnesses which are related to toxicity. Genetic susceptibility, exposure to toxins, pathogenic organisms, emotional traumas....all the same stuff we always talk about.

Anyways, here some new research regarding MCS.....and the distinction between allergy and toxicity. For me there is no doubt that this is not related to allergy......its totally toxicological. Interestingly, this research states that MCS cannot be effectively treated with allergy desensitization.....since this is a detoxification issue...and not an allergy.

My own experience with desensitization would confirm this.....although I DO think that I also experience some allergic responses to certain chemicals. Some of this might have improved with desensitization....but the MCS itself is not at all resolved.....because this part would involve the liver's detoxification pathways.

Researchers Confirm Multiple Chemical Sensitivity is Poisoning, Not Allergy

Researchers from Japan have confirmed that multiple chemical sensitivity (MCS) is not an allergy.

Rather, MCS is a condition in which individuals suffer with symptoms when exposed to low levels of toxic chemicals in the environment. Several studies have shown that people with MCS are unable to break down these toxicants efficiently, a function the liver normally serves.

Researchers suggest that patients having allergic diseases may easily suffer from MCS at the same time or MCS may strengthen symptoms of allergic diseases. And though MCS and allergies may both occur in some people, they do not both occur in all people with one or the other condition.

Individuals who visited a specially built facility for Sick House Syndrome were examined in the study. Allergic rhinitis was the most popular allergic disease in the possible cases of MCS.

The key is understanding which is which so that proper targeted treatments may be selected. Testing is critical to making a proper diagnosis.

There are two types of reactions that may occur to the same chemical in different individuals:

Chemical Allergy

Toxicity (MCS)

In chemical allergy, the individual is actually allergic to the chemical and immunoglobulin E (IgE) is elevated. This is the type of reaction that would most readily respond to treatments such as low dose antigen therapy (LDA), nambudripad allergy elimination technique (NAET), and other allergy desensitization techniques.

In MCS, IgE is not elevated and the reaction is not allergic in nature. Often the reaction is of a toxic nature and results in neurological symptoms as opposed to typical allergy symptoms such as sneezing, itching, watery eyes, and inflammation.

This neurological effect is what makes MCS disabling. The lack of IgE (allergy) renders MCS irresponsive to such treatments as LDA and NAET. Avoidance of chemical triggers is essential to maintaining functional capacity. This is often difficult to achieve as fragrances and chemicals which have neurotoxic effects are all around us.

It may appear that MCS is improving from allergy treatments in individuals who suffer from both allergies and MCS. When the allergic condition improves, it is not impacting the MCS condition as severely. The converse may also be true.

The most important information this study provides is confirmation that MCS symptoms are not easily treatable with allergy remedies. This also negates the perception that individuals with MCS overreact to what ails everyone. MCS is, based on studies showing impaired detoxification, quite literally, more attuned to chronic poisoning.

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Mslee,

Welcome! About the chemicals thing...I just try to stay away from as many as possible. I definitely have a problem with perfumes, colognes, household cleaners, etc, but I also try to make sure I stay away from food that may have them.

April,

Interesting about the water. On a work day I drink between 6-8 glasses, and I'm wondering if I need more than that. Weekends is usually much less because I'm out and about and water isn't handy and I forget, lol. My neck has been much worse lately.

Rachel,

Pink = :lol: You' DIE if you saw what I've bought lately. BRIGHT, FUZZY pink slippers in several styles...a BRIGHT pink shawl thingy to take to the hospital, and some bright pink pajama bottoms, lol.

Everyone,

So, I saw the surgeon again yesterday. My bloodwork and EKG were great and he was very pleased with them. My CT scan showed a spot on my liver. He can't say for sure what it is or isn't, but while he's in there doing his thing, he'll get a biopsy of it. That will save me having to get a needle biopsy, which doesn't sound fun. Still no date on the surgery, and not a lot more info than I had before...this time he said I'd be in for upwards of a week.

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Donna, sounds like you are going to be "in the pink" while in the hospital and recovery, LOL! Good to get the update, keep wondering when the date will be.

Sherry

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Donna,

Ditto what Sherry said.

I hope you'll be ok in the hospital for a "week" (whether it be more or less). Are they going to be able to handle your diet restrictions? Are you going to be restricted more for awhile due to surgery?

email me your number if you could. I don't have caller id so don't have it. I'd also like to know the hospital number before you go in for surgery. :)

What am I do up at this awful hour? :lol: T has had a rough night so not much sleep for me.

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I think I won't have a definite date until next week sometime. The nurse has to schedule it with the hospital, and it's a two-surgeon surgery, so I imagine there will be scheduling concerns trying to get both on the same day at the same time. I saw her late yesterday, so she may have called or may wait until Monday to call them.

I think the diet restrictions won't be much of an issue...I probably won't be able to eat anything for several days. I've had 3 of my endoscopies there and they were VERY good about documenting allergies and intolerances...I got a nice bright RED bracelet listing everything. When I can eat, I'll make sure I don't eat anything that might be gluten or casein laden, but I probably won't worry much about the other stuff. I'll have to be able to eat before they let me out, lol. I will most likely be more restricted after surgery. It could cause diabetes and it could cause problems digesting fats...I won't know until after. My mom is more worried about that part of it than anything else, lol. She already gets nervous thinking about what I can eat...the thought of more restrictions really has her upset.

Yeah, awful hour...I couldn't sleep last night at all so finally just got up at 3 a.m. I hate insomnia, lol! :rolleyes:

I'll email you Andrea.

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Rachel,

I feel off the basic food train last night. I had to have chips and an beer lol. I wasnt really feeling any different on the diet, im not sure if was cause of the eggs or potatoes lol. Im thinking i need to find an really basic detox diet, other then scd lol.

Maybe i would wear an vest if it was pink and in leather lol.

Im not sure on the most impatient perseon, i think we are pretty tied on that one lol.

Donna,

You are my type of person, with all that pink. But you already knew i was a pink freak to lol.

Everyone,

I could not sleep either, then when i wanted to sleep the kids decided to get up, dont they know its the weekend and they can sleep past 6 am lol

paula

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Well, that's one thing I know I need to address...drinking more water.

Carla, the other day when you mentioned taking more glutathione, I thought to myself maybe that would help with my herx this week. It was not as bad as a month ago but had a lot of the fatigue going on for a couple of days. The morning it was the worst I decided to take an extra 0.5 cc shot of glutathione and see if it would help. It helped A LOT! I was due for the shot the next day for 1 cc, so I cut it back a bit to make sure I didn't get too much. But I will ask my LLMD next time about whether I can take more when I need it like that.

The other thought I had was doing your ecoffee later in the day?

I have gotten lax about taking the glutathione ... I need to get back on that. Ecoffee works better in my schedule early. ;)

I slept in till 11!!! :o I feel good today!!! Sorry about the rest of you with insomnia, I obviously made up for it! LOL

Donna, good luck with the surgery!

Pink, I love pink! Always have! I wear a lot of it, so does Morgan. My other kids, not so much. I didn't know vests were coming back! I love vests, too, LOL.

I can't believe I go to Germany one week from today!! Woohoo! I don't know if you've been keeping up on LN .... the chatter about the Bionic is high ... it's the most read thread right now. I'm so excited since the lady who went over is now Lyme free.

I really am amazed at how much better I feel today. I had one tequila and tonic last night ... that must be it, LOL. Just one and I told the bartender to make it weak .... and it was very small. ;)

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than you! thank you! thank you!

for all the info and support!!!

Good Luck with all your health stuff!!!

Gotta Run for now, the Hubby and I are trying to have a medical worry free weekend :)

will be back later.

Good Luck guys I hope you are feeling better this weekend!

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Nora, yeah, I remember that too. I am on an antiparasitic and have been for quite a few months, and I will soon start the PPI.

Just to update everyone...my ferritin and iron is really low again, my hematologist called and told me I need Iron IV's this coming week (he wanted to do it last week, but I said no.) This is the one that 3 out of 4 patients go into anaphylactic shock. his nurse told me last year that 3 patients they gave it to almost didn't make it downstairs and next door to the ER because their reactions were so severe. She said they literally were giving them shots of epinepherine in the elevator so they'd make it to the ER.

Needless to say, I'm scared. Also, I can't seem to stop losing weight because my appetite is totally out the window since the surgery, and fats aren't digesting well and are causing pain. So, I've been losing a pound every other day...it's actually scary...I even think I look too thin which is SHOCKING! :lol: LOL!

Dr B is going to talk to Dr H about getting me on IV nutrition because I'm malabsorbing so much that all my nutrients aren't going in...anything that is going through my intestines isn't being absorbed. She also said that might help me be stronger to help fight anaphylaxis...rather than my body croaking out on me, it would possibly help it have the strength to fight back more.

Dr H of course doesn't want me to have the Iron IV's, but Dr B really does. She said that I'm looking scary and need to gain weight AND get iron! I'm SO pale...I look like a "ghost" according to her. :( So she said that she can treat me for the Iron and we can hope that it will work. The other thing is, she'll treat me for the steroids because she thinks I really need to get this stuff done. I agree with her...I don't feel good mainly because I'm so low in iron.

So, that's whats been going on! Fun stuff for sure!!! :rolleyes:

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I can't believe I go to Germany one week from today!! Woohoo! I don't know if you've been keeping up on LN .... the chatter about the Bionic is high ... it's the most read thread right now. I'm so excited since the lady who went over is now Lyme free.

Carla, I'll be looking forward to your updates from your trip. With getting the mold exposure out of the way, I am hopeful this will be the last piece to full health for you.

Donna, sounds like further food restrictions will be quite an adjustment. Why can this cause diabetes? With fat and carb restriction it will be challenging.

I'm another that likes pink--certain pinks look really good with my coloring. My daughter has been really off pink though--seems like in HS it was so out of fad...she still doesn't like it.

Kassandra, this is scary. Does Dr. H have an alternative option? Maybe you could try my carrot/chicken puree cream soup. I'm also trying to get stuff to absorb.

Sherry

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Carla, I'll be looking forward to your updates from your trip. With getting the mold exposure out of the way, I am hopeful this will be the last piece to full health for you.

Kassandra, this is scary. Does Dr. H have an alternative option? Maybe you could try my carrot/chicken puree cream soup. I'm also trying to get stuff to absorb.

I'm being lazy, so ditto to what she said. :)

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kassandra, I was just thinking that it is abit severe, but nothing dramatic will happen from waiting other than that you will have to be mostly in bed or on couch and in the end you will need both prednisolone and the iron infusion (prednisolone to prevent the allergic shock).

So I was wondering if a protone pump inhibitor in the meantime could show wether a tiny blood loss is the reason for losing iron.

Just thinking.

Other thing is that prednisolone will cause the villi to grow back even while eating gluten. But it will not help with the lyme and babesia. As far as I can gather, dr H saya no steroids because it can make lyme and babesia worse. How much worse? Will the benefit of villi growing back on steroids out-weigh the setback with lyme??? Just thinking.

And, you will have to wait a month for C. to come back with the B.880.

Just thinikng.

You could have some old-fahioned iron shots in the bum in the meantime, maybe. They hurt but are well tolerated in general. Just you need so many of them.

Another way to get iron is to put rusty nails into an apple and pull them out again, an old remedy but you do not absorb now. Eating liver every day was another way they kept alive on in the old days before iron shots. But then you need to be absorbing.

I posted something about the salt/ vitamin C treatment over in the lyme thread. I read on the swiss forum that lots have success with it , and the whole procedure was published in a townsend letter earlier this year.

And then we have these infrared clothes items, maybe the thing Yube-like thing) to cover your back and abdomen can help with the villi. They reflect infrared light in the same specrum as the B.880.

nora

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