Omg...i Might Be On To Something

[CarlaB]

Yes, this is one of the first symptoms I had. I seem to be revisiting it exactly as it was the first time around. Other symptoms have come and gone .... like my TMJ pain was really bad a couple days, now not at all. That's why I think it may be related to detoxing/retracing. I'm not getting worse ... it's like I'm going backwards through all my symptoms. Last time I relapsed/declined when I got off meds, I just got worse all over.

Though I am starting to feel bad. After I worked out I ate a little and now hurt all over ... I took a Norco and tanned (sunshine helps sometimes, but there's no sun today). I think I'll be able to push through and get done what I need to do today. If I weren't getting ready to go out of town, I'd lie down.

Yeah, Donna, hairspray is WAY more important than disease! Gosh wish hairspray was all we had to worry about. Nonetheless, it was fun to talk to her about something non-sickness related, rofl!

This came to me yesterday ..... the three times I previously was sick with Lyme (1982, 1986, and 1991) .... all three times I had mold exposure. In 1991, we moved from an apartment that had a water leak, the leak was one of the reasons we moved. In 1986, we had a leak in our bathroom.

The only questionable one was 1982 .... I lived in the KD house at IU. I got really sick to the point my roommate took me to the doctor. After Christmas break, I moved to another wing of the house built at a totally different time than the one I lived in first semester (the house sleeps 90, so it's huge). I lived in the other wing the other three semesters I lived there and was never sick. So, this one I'm not sure about ..... but the bathroom was ancient, so was the furniture in that wing, the other wing had new furniture.

Just an interesting revelation.

[CarlaB]

Cool....you will like him.....he's really nice.

Tell him I said "hello"....its been awhile since I've talked to him.

I will. I won't see him till the 27th ... our treatments just overlap a little. I meet another guy, too, who is also from CA. I doubt you know him though.

There's another amazing post on the Bionic 880 by a woman whose two very sick kids (college age) made amazing progress over there. They both had to drop out of school .... now they're both functional again. I am SO hopeful. If I get rid of the Lyme, then I shouldn't be so sensitive to mold, metals, etc. I'm also excited to get back and help Chloe and my younger daughter who I suspect has Lyme.

[CarlaB]

haha.....hairspray is definately a priority.

I use Finesse....its gotta be unscented....it works really well. Its one of the few things that I was using BEFORE I got sick and didnt have to switch. Some of the other hairsprays totally kill me.

One thing I had to do without was mousse. I used to use it to "scrunch" my hair when I got out of the shower. I reacted to all of them because of the fragrances.

I finally found one a couple months ago that is totally unscented....I was SO excited and even MORE excited when I used it and had no reaction. YAY!

Well, you guys can't use it (has gluten) .... but I use Pureology shampoo and conditioner. There's also a spray styling gel. You know how if you clean your carpet with a carpet cleaner how that spot attracts dirt forever? Well that's what most shampoo does with your hair. This Pureology does not, so I only need to wash my hair about twice per week! Good thing because it's $25 per bottle ... but you use a tiny, tiny bit and don't wash it every day, so it ends up working out.

But for hairspray I use either Bedhead or Garnier Fructis. Can't justify expensive hairspray, LOL.

[Rachel--24]

You know how if you clean your carpet with a carpet cleaner how that spot attracts dirt forever?

It does??

I guess my whole carpet is one gigantic magnet for dirt now.

I have a hard time with hair products mainly because of the fragrances...but I've also had bad reactions to some of the natural ones because of salicylates (I think).

I use Garnier Fructis shampoo. It works good and doesnt make me sick. I used to wash my hair daily...but now its more like 2 x a week. I'm wearing a hat most of the time anyway.

[confused]

Did you ever try cutting out the processed foods?

I was just eating steak, potoatoes, brown rice and eggs. I wonder if my candida is back with a vengenance. Would that cause major stomach pain.

Well my mom came and we didnt get to go anywhere but we did have an good talk. We both ended up crying, she told me i better get better cause she refuses to bury me. She said she dont care how many test we have to to do or how far we have to travel, we will make me better again.

She brought me the alumunium free deodrant, i cant wait to try it. I have just not used deodrant for 2 weeks and im starting to get sick of my own smell lol.

I also know my chemical sensitivity, is way up. The neighbors were mowing the grass while we were outside and i got so sick. My mom was like what is wrong, she started to panic. Im like the smell of gas is making me want to pass out.

So i know my bucket is completely overflowing.

Good news tho, my stool test was sent out on the 6th, so i should have it by the weekend. Im hoping it will shed some light for me. She said i had to stop taking everything until it is done.

carla,

Do you have room in your suitcase for me lol

paula

[mftnchn]

Carla, interesting about the mold. My major downhill occurred after I started living in a moldy climate. I started treating lyme after I moved from there, so its hard to compare.

Donna, yeah, that's why I couldn't treat mold all those years. Probably I detoxed enough after leaving the moldy climate to tolerate the shots.

I am using AG styling spray from my hairdresser.

Woohoo....I think I might have figured out the problem in terms of the return of intestinal symptoms. BM is noticeably better today--(its like I lose any peristalsis and nothing moves through). I am betting it was the contaminated cinnamon. I don't know if it is flour or starch in there...but I was using it in my carrot soup. This could have been a glutening even! Added to that the almonds with additives.

Also something really interested re babesia perhaps. The constant hot flashes and miserable nights stopped this round of Zithromax. Kinda suggest it might not be hormonal, right? I switch off on Sunday to Enula.

[CarlaB]

It does??

Well, that's been my experience! :lol:

Yeah, twice a week is how much I wash mine .... it's long and curly .... it usually looks better on days I don't wash it and don't brush it, rofl! I'll get compliments on it when it's nice and dirty! No wonder all my friends are on the internet!

carla,

Do you have room in your suitcase for me lol

paula

No, but I guess if this works, I'll be meeting many of you here in Ohio. I talked to Adam about getting a guest room set up over at the office house ..... as Kassandra can tell you, the study at our house isn't very private ... and our house isn't very quiet with so many people living here, not that it would bother you paula!

Also something really interested re babesia perhaps. The constant hot flashes and miserable nights stopped this round of Zithromax. Kinda suggest it might not be hormonal, right? I switch off on Sunday to Enula.

Sounds like it might not be. Have you been tested for Artemesia? Maybe you could take that with both the Enula and Zithromax to constantly be treating Babs. Dr. Zhang's artemisia, according to Dr. Zhang, can be used as a stand alone treatment for babs (though most LLMD's say to use it with something else, but Dr. Zhang's has other things in it).

My monthly flare up is starting. I have had air hunger all day. I didn't think I would have one since I'm off meds.

[confused]

Carla,

Nope, noise and no privacy would not worry me at all. The only time i worry is when i dont hear noise lol.

paula

[Rachel--24]

No, but I guess if this works, I'll be meeting many of you here in Ohio.

No offense Carla but if it works I'd go to Germany....

I got a good enough reason to wanna travel much farther than Ohio.

[CarlaB]

No offense Carla but if it works I'd go to Germany....

I got a good enough reason to wanna travel much farther than Ohio.

No offense taken. I can't believe you're still here ... I'd be in Germany already if I were you!!!

I think it's probably just as expensive to travel in the states as to go to Germany anyway .... I think the treatment is rather reasonable.

[mftnchn]

I think it's probably just as expensive to travel in the states as to go to Germany anyway .... I think the treatment is rather reasonable.

I guess that is what I am trying to get a sense of, what would be the expense involved in the whole picture. I'm afraid it is out of range for me.

[aprilh]

Carla,

So you are buying the bionic 880 and bringing it back?

Are they available to order? Sounds like something good to have for all sorts of things.

And I do know what you are talking about with the carpet cleaner. I had a carpet cleaner person tell me one time that most commercial cleaners leave a residue that attracts dirt from there on. I usually just use vinegar.

I only have a small area with carpet and its already so dirty and stained! I want to get rid of it and use a different kind of flooring, but I don't know what. We have tile and hardwoods in the same vicinity that it would need to match to. ANd the hardwoods are from the 50's so they are the older smaller strips that aren't sold anymore.

I am having a hard time finding formaldehyde free (green) carpet.

Paula,

What kind of stool test did you order? Will your mom help pay for you to see an alternative type doctor?

Sherry,

sounds like you narrowed down the culprit....Stupid starchy cinnnamon!

[CarlaB]

I am buying a machine and bringing it back. I don't know if you can just have it sent here. I know someone who tried and ended up having to send it back and pick it up while she was in Germany.

Sherry, it's not that expensive. The medical part will be around $2000, it would be $3000 at the most, but you and I aren't severe cases (anymore). This is the guest house - Open Original Shared Link The other cost is the plane ticket. Considering the cost of ongoing treatment that we have all been paying for it seems reasonable to me.

April, oriental rugs dyed with vegetable dye are great. My orientals were expensive, but they still look brand new and some are 10 years old. They are made with wool. But you would have to figure out flooring still. Our house had the thin strips, but our house is 92 years old, so the floors weren't salvageable. But, I learned that the narrow strips that matched our floors, though we did not get them, are available, but are thinner flooring than the wider strips, so it's not often used. I bet a good flooring company would have your narrow strips.

[confused]

April,

My mom would spend millions to get me well lol. She wants me to see an alterative dr again but hte thing is i cant even travel, and we have none in my area. I did see one months ago but she was an quack lol.

The stoot test i ordered, test for parasites, mold, h-pyloria, giardia, gluten, soy, eggs and casein and so much more. All i know is the gluten and casein better be negative after 2 years. It is costing about 340, it was the most comprehensiveone i could find. Once i wake up I will post everything it test for lol

paula

[confused]

Here is what it test for

parasites (some are giardia, toxoplasma, ameba, chryptosporidium,, yeast, candida albicans, leaky gut (Total Intestinal Secretory IgA), food intolerance's (dairy, soy, egg, gluten/gliadin), digestive enzymes, worms (tapeworm, roundworm, trichinella, colon inflammation, small intestinal irritation, blood, pH, bad bacteria, Helicobacter pylori, C. Difficle, and mold.

Im guessing ill be positive for at least leaky gut, prasites, worms, bad bacteria, h-pyloria and mold at least What do you think lol

paula

[CarlaB]

I think that if you don't it must be a poor test, LOL!

[christine 25]

Foods to Avoid

This list consists of foods with sufficient tyramine

*

Alcoholic beverages - avoid Chianti wine and vermouth. Consumption of red, white, and port wine in quantities less than 120 mL present little risk (Anon, 1989; Da Prada et al, 1988; McCabe, 1986). Beer and ale should also be avoided (McCabe, 1986), however other investigators feel major domestic (US) brands of beer is safe in small quantities (1/2 cup or less than 120 mL) (Anon, 1989; Da Prada, 1988), but imported beer should not be consumed unless a specific brand is known to be safe. Whiskey and liqueurs such as Drambuie® and Chartreuse® have caused reactions. Nonalcoholic beverages (alcohol- free beer and wines) may contain tyramine and should be avoided (Anon, 1989; Stockley, 1993).

*

Banana peels - a single case report implicates a banana as the causative agent, which involved the consumption of whole stewed green banana, including the peel. Ripe banana pulp contains 7 mcg/gram of tyramine compared to a peel which contains 65 mcg/gram and 700 mcg of tyramine and dopamine, respectively (McCabe, 1986).

*

Bean curd - fermented bean curd, fermented soya bean, soya bean pastes contain a significant amount of tyramine (Anon, 1989).

*

Broad (fava) bean pods - these beans contain dopa, not tyramine, which is metabolized to dopamine and may cause a pressor reaction and therefore should not be eaten particularly if overripe (McCabe, 1986; Anon, 1989; Brown & Bryant, 1988).

*

Cheese - tyramine content cannot be predicted based on appearance, flavor, or variety and therefore should be avoided. Cream cheese and cottage cheese have no detectable level of tyramine (McCabe, 1986; Anon, 1989, Brown & Bryant, 1988).

*

Fish - fresh fish (Anon, 1989; McCabe, 1986) and vacuum- packed pickled fish or caviar contain only small amounts of tyramine and are safe if consumed promptly or refrigerated for short periods; longer storage may be dangerous (Anon, 1989). Smoked, fermented, pickled (Herring) and otherwise aged fish, meat, or any spoiled food may contain high levels of tyramine and should be avoided (Anon, 1989; Brown & Bryant, 1988).

*

Ginseng - some preparations have resulted in a headache, tremulousness, and manic-like symptoms (Anon, 1989).

*

Protein extracts - three brands of meat extract contained 95, 206, and 304 mcg/gram of tyramine and therefore meat extracts should be avoided (McCabe, 1986). Avoid liquid and powdered protein dietary supplements (Anon, 1989).

*

Meat, nonfresh or liver - no detectable levels identified in fresh chicken livers; high tyramine content found in spoiled or unfresh livers (McCabe, 1986). Fresh meat is safe, caution suggested in restaurants (Anon, 1989; Da Prada et al, 1988).

*

Sausage, bologna, pepperoni and salami contain large amounts of tyramine (Anon, 1989; Da Prada et al, 1988; McCabe, 1986). No detectable tyramine levels were identified in country cured ham (McCabe, 1986).

*

Sauerkraut - tyramine content has varied from 20 to 95 mcg/gram and should be avoided (McCabe, 1986).

*

Shrimp paste - contain a large amount of tyramine (Anon, 1989).

*

Soups - should be avoided as protein extracts may be present; miso soup is prepared from fermented bean curd and contain tyramine in large amounts and should not be consumed (Anon, 1989).

*

Yeast, Brewer's or extracts - yeast extracts (Marmite) which are spread on bread or mixed with water, Brewer's yeast, or yeast vitamin supplements should not be consumed. Yeast used in baking is safe (Anon, 1989; Da Prada et al, 1988; McCabe, 1986).

Foods to Use with Caution

This list categorizes foods that have been reported to cause a hypertensive crisis if foods were consumed in large quantities or stored for prolonged periods, or if contamination occurred. Small servings (1/2 cup, or less than 120 mL) of the following foods are not expected to pose a risk for patients on MAOI therapy (McCabe, 1986).

*

Alcoholic beverages - see under foods to avoid.

*

Avocados - contain tyramine, particularly overripe (Anon, 1989) but may be used in small amounts if not overripened (McCabe, 1986).

*

Caffeine - contains a weak pressor agent, large amounts may cause a reaction (Anon, 1989).

*

Chocolate - is safe to ingest for most patients, unless consumed in large amounts (Anon, 1989; McCabe, 1986).

*

Dairy products - Cream, sour cream, cottage cheese, cream cheese, yogurt, or milk should pose little risk unless prolonged storage or lack of sanitation standards exists (Anon, 1989; McCabe, 1986). Products should not be used if close to the expiration date (McCabe, 1986).

*

Nuts - large quantities of peanuts were implicated in a hypertensive reaction and headache. Coconuts and brazil nuts have also been implicated, however no analysis of the tyramine content was performed (McCabe, 1986).

*

Raspberries - contain tyramine and small amounts are expected to be safe (McCabe, 1986).

*

Soy sauce - has been reported to contain large amounts of tyramine and reactions have been reported with teriyaki (Anon, 1989), however analysis of soy sauce reveals a tyramine level of 1.76 mcg/mL and fermented meat may have contributed to the previously reported reactions (McCabe, 1986).

*

Spinach, New Zealand prickly or hot weather - large amounts have resulted in a reaction (Anon, 1989; McCabe, 1986).

[christine 25]

I started taking Inositol Powder, yesterday... 2 grm 2 times a day, so far. Has Anyone heard of Inositol?

It's supposed to help with liver detox, anxiety, and most of all OCD, (which I have)

I bought some from the health food store for 20$ but I found the same brand on line ( Jarrow ) for way less!

Open Original Shared Link

It takes several weeks to start working, but so far no side effects for me.

Ill let ya know if it's working.

Here is a good link that I have found... a psychiatrist who uses it and talks about the dose etc...Its basically his protocol.

Open Original Shared Link

[tabasco32]

Just browsing through. So I am quite tired. Yesterday was my mom's birthday, so I made her a birthday dinner. There are three birthday's back to back. Mine was the 3rd, the 8th my mom's and the 15th my brothers. So I made dinner last night for ten.

I made pizza, calzones and rigattoni. I was in the kithchen for 7 hours straight. Will I ever do that again? Maybe in like 5 years. So yeah, I ate lots of bad food. I also made a homemade German Chocolate Cake. My mom is a senior now. DISCOUNTS!!!

Has anyone seen Beverly Hills Chihuahua?

[Rachel--24]

No offense taken. I can't believe you're still here ...

Yeah....I cant believe it either!

Oh well....my friend is coming back to visit in less than 4 weeks.

I have no plans to start any treatments with the machine (Dr. W. or anyone else) until I get the detoxification issues worked out first. Even if the machine works.....I dont see how it can possibly help me if my problem is within my biochemistry. Even if it helps with the bugs and helps the body to release metals...nothings going anywhere if the way out is blocked.

Thats the main question I'd have about the machine....how is it gonna help people who have issues that are directly caused by things like an impaired methylation cycle or faulty sulfation?? Those things might create a situation of increased toxicity and susceptibility to infection.....and the machine may be able to target those things.....but can it repair the blocked pathway so that this stuff can be detoxed?

So far I havent seen anything to lead me to believe it can fix the deeper issues of impaired detoxification... and the things that are typically seen in Autism for example.

Thats why I'm holding off on it right now. Even if it works for you.....I dont know that it would work for me. I've tried different things for detox (LED and the rest) but none of it addressed the underlying issue....and my body still cannot detoxify. I think I would have the same results with the machine if I were to attempt treatment right now.

One of the things that Dr. K stated was that "The only way out is the way through".

I always remember that and I definately think that in my case the way through is pretty much a dead end right now.

If my new doctors can get things moving....so that my body is able to unload some of this stuff on its own.....then I would think that these types of treatments would be much more beneficial for me. So I'll wait for that....and see what happens.

Then I'll go to Germany.

Im guessing ill be positive for at least leaky gut, prasites, worms, bad bacteria, h-pyloria and mold at least What do you think lol

Paula,

Keep in mind that some things (like parasites) are very difficult to test for. Hopefully some things will show up in the results.

Like Carla said.....if stuff doesnt show up it must be a poor test.

Some labs are very good and others are less reliable....so it depends on the quality of the lab I think.

[mslee]

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.

Got my Allergy test back I tested positive allergic to:

-milk

-corn

-rice

-soy

-pecans

-cashews

-other nuts were ok

a few others but those seem to be the worse

So good call!

I will talk to my GI tomorrow about SCD.

And probably now that I have somethings narrowed down see a dietitian! Yay!

Rachel ~ I think you posted something about chronic poisoning of heavy metals and Liver Dis-function. My liver is showing odd lab results, I find out more about what is going on tomorrow.

Will have to see an alternative Dr for further chemical testing but for now, I know I am sensitive so will just continue to be careful. & try and pinpoint anything I could be regularly consuming with toxic ingredients.

Could plastic contamination in bottled water be an issue I wonder???

Christine ~ what is that list from? Will look into, tyramine thanks!

I eliminated most all of those foods while taking out soy,dairy, MSG/Processed foods...def feeling better since!!!

Paula ~ are you on a processed food free diet? Have you had allergy testing done? I see you are waiting for your intolerance tests back, hope they provide some answers! If not try above mentioned taking out MSG was a huge help for me! Hope you feel better!!!

Everyone else...HELLO!

Thanks for the input, very helpful!

[mftnchn]

Paula, too bad it doesn't check for food residues, especially sugars. That would be better than digestive enzymes to see if you are digesting fats, proteins and carbs.

Mslee, good news that you are finding some answers. If you do SCD initially dairy free, you might be able to tolerate small amounts of the goat milk yogurt, a lot of people can. You could try the teaspoon at a time approach on www.pecanbread.com.

Christine, good to see you. Hope this helps you, I'll be interested to hear.

Everyone, I'm off on my trip to Thailand in a couple of hours. Hope to have internet access but not sure.

Sherry

[CarlaB]

Just browsing through. So I am quite tired. Yesterday was my mom's birthday, so I made her a birthday dinner. There are three birthday's back to back. Mine was the 3rd, the 8th my mom's and the 15th my brothers. So I made dinner last night for ten.

I made pizza, calzones and rigattoni. I was in the kithchen for 7 hours straight. Will I ever do that again? Maybe in like 5 years. So yeah, I ate lots of bad food. I also made a homemade German Chocolate Cake. My mom is a senior now. DISCOUNTS!!!

Has anyone seen Beverly Hills Chihuahua?

You didn't invite US??? OMGOSH, I would have LOVED that dinner!!!!! I've got to go cook dinner, only 5 tonight. We're having enchiladas.

Rachel, you'd have to ask GiGi, but I believe the Bioinic 880 takes care of that. She'd be better able to explain why .... and she has been talking with Dr. K about the machine, so she'd have his perspective, too.

There is a guy going while I'm there, but not with us, he gets there later, who has the no detox gene, so he might be a good gauge on how well you'd do, whereas, I'm totally different. He sees Kassandra's doctors, including one who does some kind of energetic or muscle testing.

Sherry, when I was little, my grandparents on both sides did a lot of traveling. They would buy me dolls from every country they went to. I ended up with a collection of over 100 dolls, mostly foreign. Anyway, one of my favorites is the one from Thailand. The dolls are small, wearing traditional attire of the various countries. Adam thought the collection was so cool that we have it on display. They are pretty neat.

[confused]

This completely off topic but i just had to share.

You all know how i felt really really bad the last few weeks. Well I guess it has taken an toll on my kids and my 7 yr old was talking to his teacher, on how his mom is really sick and his dad has to work nights so he is home with his mom during the day to do all the errands and everything else.

Well today hubby went to pick the kids up from school and they made us many meals. They made us gluten free food and regular food. I have never seen so much food in my life. My dtrs teacher is also celiac, so they made us the gluten free food. I bet they spent way more then 100 bucks on all the food.

I told hubby did i not get the email that i was dying. I had to make myself laugh cause i was bawling like an bb. It is nice to know there are still wonderful people out there.

[CarlaB]

That is so sweet Paula.