Omg...i Might Be On To Something

[Calicoe]

Hi everyone:

I'm sorry for the long and repeated post (first on another sub-forum), but I want to introduce myself and don't have the energy right now to repeat again:

LONG Story

I have been lurking here for a couple of weeks, and this is my second post. I needed to respond immediately to another thread on additional new sensitivities besides gluten to let the OP know that she is not alone. Increased sensitivities are exactly what has started to occur with me. I am still so new at figuring out celiac disease that it has only been about 1 month since self-diagnosis, but the information that I have gotten off of this board has helped me put my life-long mysterious illnesses into perspective. Thank you all!

I have started to seriously eliminate gluten but am still very much a newbie, but I have noticed definite and unambiguous reactions to corn, and suspect eggs, soy, and dark chocolate. My current headache is due to chocolate; last week it is was corn, along with a horrible buzzing in my head. Yesterday I had eggs, and I started sneezing again, with tell-tale runny nose and red eyes. With soy, I seem to experience excessive thirst, and I was peeing all day.

I am really scared, guys. I have never been so chronically ill in my life. I have always suffered from neck and lower back pain (sacrum), migraines, clogged ears (with the right ear more clogged than the other), fussy skin, strep throats and bouts of bronchitis, swollen glands, grinding teeth as a child, and intolerance to even the mildest birth control pills. I was adopted as an infant, and I recently found out that my biological brother was suffering from bronchitis this past January like me, and then was recently checked into a hospital for debilitating hip joint pain which he thought was gout. They ran a bunch of tests and couldn't come up with a diagnosis. I learned that all of these disparate symptoms are significant from lurking on this forum the past two weeks. *(added): My biological father died from a heart attack in his mid-fifties, and my half sister and brother said that he had a "dairy thing" and had considered going macrobiotic. I am 44 years old.

In grad school in 2002, I removed dairy from my diet for a summer and cut down on "pasta and bread" and then went back to grad school and started eating it again. My face swelled up, my eyes were red and glazed over, and I could hardly breathe. It was visible to everyone in my grad dorm as an emergency and I went to the campus doctor. She thought I was trying to avoid exam period. No diagnosis.

Over the last 2 years, I have been suffering with horrible GI distress while living in Thailand. I cut out "pasta and bread" again to stay slim, and found that the Japanese diet of salmon, seaweed and miso soup was incredible for my health and banished the debilitating migraines and menstrual symptoms. I felt great but didn't know exactly why yet! I thought it was the tofu and salmon, but I always had an instinct that "bread and pasta" were not the best for me. While in Thailand, the GI distress had many variables. I also became infected with the giardia parasite. I was treated twice there with albenzole.

Upon my return to the States in Oct. 2006, I also returned to bread, pastas, cheeses, and dark chocolate on a regular basis. My gut was horrible, and still showed all of the GI signs of giardia. I went to a health clinic (no health insurance), and they gave me two rounds of flagyl (I also had bacterial vaginosis at the time). I also got myself a highly stressful job, and my GI symptoms became even more horrible. I truly felt diseased. I was at that job and quit in Sept. 2007, but not before I saw a horrible doctor at an HMO last April.

This is where our CURRENT story begins: I had all the GI distress, plus immune responses such as sneezing and constant nose drip, watery eyes, etc. He diagnosed me as lactose intolerant and wanted to call it a day, and I asked for a blood test to determine if I had a milk allergy. The test came back positive for a milk allergy, and he said that I was also showing for anemia, a high white blood cell count, and candida. I didn't know what that meant this last year until I found all of you good people on this site a few weeks ago! I first googled for wheat allergy a few weeks ago, and my knowledge has grown so much since then. Before I googled, I got to the point of having a migraine every day, and such horrible GI distress that I was sure would lead to cancer. I also had this itchy rash since last year, that I thought was an allergy to indoor heating (since I had lived for 4 years without it). They were small open bumps, and always appeared on both thighs, or on both sides of my waist. I now know what that means. Since I stopped gluten they have mostly gone away, except for a scratch here and there. I finally made a direct connection with wheat, and the rest is history.

But, I quit that horrible stressful job and now have no health insurance. I have all of you, and I have just started to learn how to eliminate gluten, but am still very much in the rice cracker and bland potatoes stage. And, I am now freaking out because I am seeing increased sensitivities to other food.

I'm so glad I found you guys, and I'm sorry my post is so long. I had been putting off my first post because I knew I had so much to say and didn't know where to start.

[Green12]

Hi, just a quick drive by as I am only home for a short break from the restaurant. I am happy to report that with the door closed there have been no repeats of my violent throwing up. I am working seven days a week at least eight hours and sometimes ten or twelve and I am having fun.

Hi rinne! Glad you aren't experiencing the violent symptoms anymore, and it's so good to hear you are having so much fun and really enjoying your restaurant

I feel better because zeolite also balances your ph so your not to acidic or alkaline. I was very acidic and my teeth started getting brown. I couldn't eat my food without lots of salt because I couldn't break it down with my saliva. My food would feel all waxy. That because the bugs like that environment. But they could die in a neutural environment.

Hi Lisa,

Thanks for the info on the zeolite, sounds like great stuff. Glad you are noticing a difference on it, and good news about the woman who started taking it getting better.

Paula, ok now I remember I didn't know if it was that or if it was the day you were moving out to a hotel to escape the mold.

Carla, glad your fever is gone and that the herx wasn't too bad.

[CarlaB]

Carla, glad your fever is gone and that the herx wasn't too bad.

Not too bad? That only means it didn't kill me! It was horrible yesterday .... I've only missed Church maybe four times this whole time, and yesterday was one.

But today I'm doing much better. I got a terrible headache earlier .... but the windows were open, I was painting our door, and the road crew showed up right out our driveway .... so between the jackhammer and my birds yelling at it, I got a headache. I took a sauna (first time in two weeks .... my skin had gotten scaly it got so dry) and now am feeling a bit better. It's amazing how much a fever can drag you down!

Calicoe, sorry for all your health issues. I'm glad you found us. Welcome!

[AndreaB]

Hi Rinne! Glad the door closure has helped at the restaurant. Don't overdo it with all that work.

Hi Calicoe and welcome.

Lisa,

Interesting info about the zeolite. I'll have to keep that in mind.......try that is, to ask Dr. E about it in Aug/Sept.

[Green12]

I'm so glad I found you guys, and I'm sorry my post is so long. I had been putting off my first post because I knew I had so much to say and didn't know where to start.

Hi Calicoe, welcome to the forum. You will find lots of friendly helpful people here, ask any questions you may have about making the transition to gluten-free.

Not too bad? That only means it didn't kill me! It was horrible yesterday .... I've only missed Church maybe four times this whole time, and yesterday was one.

I assumed a one day herx meant it wasn't that bad

Glad you are feeling a little better today.

I have a terrible headache too, not sure what from. I think I need my mom to adjust/align my back, often I'll get a headache when I am out of alignment and that seems to help.

[confusedks]

Update: Due to insurance issues, I have to wait to have my port placed after June 1st. I guess that's a good thing because I'm going to Las Vegas the weekend of the 1st, and I won't have to worry about only having done IV's for 2 weeks, and having to travel and infuse, etc.

I decided I'm going to get a port-a-cath...NOT a Hickman/Groshong catheter. This way, when I'm not infusing I can de-access it and not have anything "hanging" off of me. I called Dr H and he is fine with that.

I will spend the next couple weeks getting other things done...like finding a home health nursing company, etc. I also have to get an ultrasound of my pelvis.

Also, I got the papers on the sulfur free diet, and OMG!!!!! I don't have ANY idea what I'm going to eat! There's about 4 veggies I can have, a few fruits and quinoa! Literally, that's almost all I can have. It says no meat, including chicken. Does anyone know...would it be bad to keep it in my diet? If I got organic, hormone free chicken? I don't feel comfortable with no animal protein.

[confusedks]

Rachel, Did you know that epsom salt baths are not allowed on the sulfur free diet? It says that on the papers Dr H gave me, and a friend of mine sees Dr Amy, and she also said no.

Interesting, huh?

[CarlaB]

I assumed a one day herx meant it wasn't that bad

:lol: It was short, but it was bad! It was an intensification of what I already had. I did pretty well today ... still dragging a little, but much better .... much, much better. Didn't lie around at all.

Rachel, Did you know that epsom salt baths are not allowed on the sulfur free diet? It says that on the papers Dr H gave me, and a friend of mine sees Dr Amy, and she also said no.

Interesting, huh?

I must need the opposite ..... I eat so many of those foods and always feel better after a bath.

Sorry about the restrictive diet Kassandra. I would feel uncomfortable without animal protein, too.

[Rachel--24]

Rachel, Did you know that epsom salt baths are not allowed on the sulfur free diet? It says that on the papers Dr H gave me, and a friend of mine sees Dr Amy, and she also said no.

Interesting, huh?

Yeah...I've read that in various places but my understanding has been that when sulfur is the issue its usually because the body is unable to convert sulfur to sulfate.

The body needs sulfate....and the sulfation pathway needs sulfate to function properly....particularly the PST enzyme which relies on sulfate.

Sulfur can build up in the body because its not getting converted to "useable" sulfate. Epsom salts are magnesium sulfate....which means that nothing needs to be converted....its already in the form which the body can utilize.

I discussed all of this with Amy and she didnt tell me to avoid the epsom salts. I actually brought them with me and she tested them. She wrote down for me to continue with the baths.

Avoiding the salts doesnt really make any sense to me unless a person is having too much sulfate in their system but it doesnt seem like thats usually the case. Usually its too much sulfur because its not getting converted and the body isnt getting enough sulfate to keep the pathway running and to keep the intestinal lining intact.

When I did all of the research on the sulfation pathway and the PST enzyme epsom salts were considered to be one of the best methods of treatment available since its supplying the body with much needed sulfate. Most of the autistic kids have problems with this pathway and they benefit from the baths. I couldnt find anything to contradict that....basically everything I read stated that the vast majority do benefit from taking in the sulfate....and only in rare cases were the baths not tolerated.

I would be curious to know why they are not allowed....I'm thinking that there is some confusion between sulfur and sulfate....in the body they are not the same.

I'm sure that some people do have problems with sulfate....but I think it would be much less common. Sulfate actually opens up the pathway because it supports the PST enzyme. Thats why it helps to relieve alot of the symptoms in the autistic kids....it helps the body to process the phenols (salicylates and other chemicals) and it helps toxins get through.

Heres an explanation...

Dr Waring found that most children on the autism spectrum are very low in sulfate and may be as low as 15 percent of the amount in neurologically typical people. People with low or no ability to convert compounds to sulfate have problems handling environmental chemicals, some medications, and even some chemicals produced within the body. They include people with other conditions such as Alzheimer

[AndreaB]

I don't feel comfortable with no animal protein.

You need animal protein, especially if you have any metals you're dealing with.

I do hope you'll consider trying to get in to see Amy. She'll give you more of an idea of what's going on.

[Rachel--24]

It says no meat, including chicken. Does anyone know...would it be bad to keep it in my diet? If I got organic, hormone free chicken? I don't feel comfortable with no animal protein.

I wouldnt feel comfortable without any animal protein in my diet. I dont notice the same problems from my beef that I'd get from the other high sulfur foods. I eat tons of beef.....as I'm sure we all know.

I only eat organic grass fed though.

I think its important to have some animal protein. You could always ask Dr. H. about that. All of the lists I've seen dont exclude all animal protein....but definately eggs are off limits.

[Green12]

Kassandra, I would have to agree with everyone about the animal protein. Can you talk to the Dr about this?

Glad you made a decision about the port you are going to use. Las Vegas sounds like fun!

That's probably the reason why Lisa's Dr told her not to do the baths.

[Rachel--24]

Aw Rachel, I hope it doesn't turn out to be anything too serious or costly!

Yeah....everyone kept telling me it was the transmission. Unfortunately, this time everyone was right.

So my car got hitched up 3 times today....it was endless....towtrucks all day long! So now its probably gonna cost me around 3 grand....hopefully a little less.

I could save some money on this but the difference is a 6 month warranty and a 3 year warranty. I'm thinking I dont wanna end up shelling out the money again a year from now.

It sucks...I've been saving money for a new car but I dont wanna buy it until I'm done with all the IV's and Dr. visits...I'm also waiting for a couple points to drop off my driving record.

I dont wanna have my insurance going sky high...right now I have no car payment and I love it...and since my car has over 200,000 miles on it (yeah...I drove the HECK out of it ) I only need liability insurance right now.

I need my car to survive 2 more years while I get my health back and get rid of the points I "earned" while driving around in a toxic stupor.

[ShadowSwallow]

Hmph, I had all of what I wanted to reply to all typed up and then someone closed the window.

Julie,

Thanks for asking, I've just finished a long (2wk-month) herx/flare. I've been pushing myself too hard (again) and have been pushed too hard by circumstances/people. It's nice to be feeling better again (after about a month on abx I started feeling about 80% when I'm feeling good... of course this is while I'm still off all the allergens... I seem to still be collecting them ).

How are you doing?

Kassandra,

Wow, that's quite a list. I hope this helps with your GI problems/fatigue/allergicness.

Carla,

I'm sure glad your herx is over!

Welcome Calicoe!

Jin

Everyone,

I'm in Cleveland right now with my Mom and sister. We're going to see the dr who should replace our allergist. He's an MD (or DO... I forget ) with alternative leanings. His receptionist told Mom that he had some "interesting" theories about lyme. He's not part of ILADS. Hopefully he'll be able to give us some guidance as far as the chelation/heavy metals go. And hopefully he'll be able to recommend a dr closer to us. 3hrs is a bit of a drive.

Birdy

[CarlaB]

I'm in Cleveland right now with my Mom and sister.

My hubby is going to Cleveland tomorrow.

[Rachel--24]

Thanks to Donna Joy, I can now cut and paste from Klinghardt's Lyme protocol, which was in pdf format

Julie, that was one of the articles I'd read that made me realize the only way to really know if I was truelly copper toxic was with the red blood cell test. Otherwise there's no way to know for sure whats going on.

One of Dr. K.'s recovered patients used to stress to me the importance of getting the mineral stores up. Without those minerals we'll have a tough time letting go of the heavy metals. It took awhile for it to sink in but now I can see how the mineral imbalances have a huge role in allowing for the toxins to remain in the body.

I think the minerals should probably be one of the first things addressed....and definately before starting chelation. I think it has alot to do with why I was not seeing the results we'd hoped for in those first months of DMPS. My minerals are all on the low side....and copper is way too high.

Hi, just a quick drive by as I am only home for a short break from the restaurant. I am happy to report that with the door closed there have been no repeats of my violent throwing up. I am working seven days a week at least eight hours and sometimes ten or twelve and I am having fun.

Glad to hear this Rinne!! I'm so excited for you and I'm really happy that you are not only getting things done but also having FUN doing it.

YAY! I look forward to your updates.

I feel better because zeolite also balances your ph so your not to acidic or alkaline. I was very acidic and my teeth started getting brown. I couldn't eat my food without lots of salt because I couldn't break it down with my saliva. My food would feel all waxy. That because the bugs like that environment. But they could die in a neutural environment.

I'm glad the zeolite is working for you Lisa. Noone likes waxy food...thats for sure!

I'm sorry for the long and repeated post (first on another sub-forum), but I want to introduce myself and don't have the energy right now to repeat again:

Hi Calicoe!

Welcome to the board.

We definately know alot about increased sensitivities here on this thread.

You need animal protein, especially if you have any metals you're dealing with.

I agree 100%.

[Guest LittleMissAllergy]

Hey everyone...seems that I've missed another five pages

I tried to catch up a bit...seems like we're talking a lot about diet and animal protein right now? I don't have any in my diet right now because for a long time I couldn't digest it. Now I'm kind of afraid to try it. I tried egg whites about a week ago and that was ALL bad. I tested super sensitive to beef and INSANELY sensitive to chicken, so my ND suggested either a mild white fish or turkey...but my LLMD said if I wasn't comfortable with that, I'd have to figure something out, like amino acid capsules? I don't know....what do you guys think about that, since you're kind of on that topic..

Kassandra- I think I missed it...what's your main source of protein that you can tolerate?

We all know Rachel's is beef beef beef

Oh and one more question aimed toward Kassandra and other young lymies...I dropped out of college (for now!, and it's justified medically now that I have the positive lyme blood test) and now I'm kind of panicking...because most days I feel kind of terrible (I know it'll get worse on the antibiotics though...which I start this week, Nistatin was today...then 2 days later Biaxin and 2 days after that Docycycline) so I'm just stuck on the couch, and mentally that's killing me because I feel like I'm missing out on these years that are supposed to be so social and fun, where I'm supposed to be growing and establishing myself. I'm 19 and I can't even drive yet. How do you guys deal with this? I don't even know what to do with myself all day (though I know once the antibiotics kick in I won't worry about this as much).

But anywho, I had my second ionic foot bath today and something actually came out, so that was reassuring. Anyone try these before?

Hope everyone is well...and that no one is herxing!

[confusedks]

Kassandra- I think I missed it...what's your main source of protein that you can tolerate?

We all know Rachel's is beef beef beef

Oh and one more question aimed toward Kassandra and other young lymies...I dropped out of college (for now!, and it's justified medically now that I have the positive lyme blood test) and now I'm kind of panicking...because most days I feel kind of terrible (I know it'll get worse on the antibiotics though...which I start this week, Nistatin was today...then 2 days later Biaxin and 2 days after that Docycycline) so I'm just stuck on the couch, and mentally that's killing me because I feel like I'm missing out on these years that are supposed to be so social and fun, where I'm supposed to be growing and establishing myself. I'm 19 and I can't even drive yet. How do you guys deal with this? I don't even know what to do with myself all day (though I know once the antibiotics kick in I won't worry about this as much).

Right now I'm just soy, gluten and sugar free. So I eat almost anything else, except I also react to everything I eat. So, I'm not really a good person to ask, LOL! I have been eating a lot of cheese as protein, which I know is bad.

My mom's bday is on Wednesday, she begged me to go sulfur free after we go out to dinner on Wed night, so I can actually eat something. Starting Thursday I will start strictly on a sulfur free diet.

I'll respond to the second part of the post later. Ambien kicked in, and I can't really type/think/see.

[mftnchn]

Hi Jin,

I agree...just pop in. We miss you. And no worries about the column.

Besides around here we have so many lyme brains...that we have to repeat things a lot to get them. So asking about something is normal even when we aren't behind reading 30 pages!!!

I also hope the budgeting works. It seems like if you could take one step in your plan for treatment you would feel so encouraged.

Sherry

[mftnchn]

Thanks to Donna Joy, I can now cut and paste from Klinghardt's Lyme protocol, which was in pdf format

This is what he said about minerals:

Julie, thanks so much for posting this. I found it really helpful.

I was surprised about the iodine! I am supposed to do that every day on my hands but keep forgetting. I am so curious as to why that is so very important! And inspired. My rubbing on my hands only lasts a couple of hours. Hmmm. Maybe I'll do it several times a day and see what happens.

I am supposed to do it to try to slow the progress of the dupuytrens disease in my hands. And now my little finger on my right hand is getting a contracture. So it continues to progress unrelentingly.

Sherry

[mftnchn]

Sherry, if you didn't get to looking it up here is the exact quote from Klinghardt's Lyme Protocol about the HBOT:

He doesn't elaborate as to why or give any further explanation in this particular pdf, there might be some other right up where it's talked about more in depth.

Thanks. I plan to look further, maybe on the weekend. I am feeling a bit better and am trying to get my high stack of work down a bit.

Sherry

[mftnchn]

Increased sensitivities are exactly what has started to occur with me.

Welcome, Calicoe.

Most of here have increased sensitivities, although not all are celiac-related like on the rest of the forum. It sounds to me like you could be celiac, definitely are gluten sensitive.

Increased sensitivities seems to be a pattern for some celiacs, and for many it is temporary and secondary to the healing process of celiac. Seems like that's a good place to start.

Perhaps you might look into malabsorption which is often present with celiac. Possibly supporting your system with the right supplements might decrease your sensitivities.

On this thread many of us have lyme disease or heavy metal toxicity, or other things that we are still trying to figure out. Welcome to join us and ask questions.

Sherry

[mftnchn]

Lisa,

Interesting info about the zeolite. I'll have to keep that in mind.......try that is, to ask Dr. E about it in Aug/Sept.

Yes, I am interested as well. I wonder if Dr. E tested this on me when she was looking for binders.

Sherry

[mftnchn]

Its weird to see all my posts together...but that's the nature of living in another time zone from you all.

Rachel so sorry about the car...that would be a nightmare for me too.

Okay, I had another allergic reaction after eating today--and this time it was not lima beans. I ate roasted lamb, fresh green beans, and then strawberries with homemade goat milk yogurt for dessert. Stuff I have been eating regularly, although it has been awhile since I ate green beans.

I have been having more seasonal trouble again, so I think it is the same as last time, just overload. Maybe the strawberries too, but I am not planning to stop eating them. They are sooo good here and the season doesn't last that long!!!

Also, the morning veggie/apple slush has been great for the elimination area. For three days almost right after I drink that, I have the urge to go. The improvement is in both the response time (earlier in the morning), the completeness of how I go (seems to more fully eliminate rather than partially or a little at a time), and my energy level is better too. So far my assessment is, it is both helpful for detox and for constipation/elimination issues. Planning to continue. I wonder how the veggies themselves intersect to have this effect. I need to look up bitter melon!

Sherry

[mftnchn]

Ampalaya (Tagalog) or Amargozo (Aklanon). Known in the west as Chinese bitter melon or bitter gourd, ampalaya became popular in the news recently because of its putative medicinal value especially against HIV/AIDS (Compound Q). The truth is, it is considered medicinal by many native herbolarios. In folk medicine, the more bitter this vegetable is, the more medicinal value it has. It's really an ugly looking vegetable and considered an acquired taste because of its bitterness. The smaller (or more elongate) and greener variety is more bitter than the larger (or plumper) pale green ones that are usually found in Asian-American markets.

Momordica charantia is a plant used for centuries in traditional Indian, Chinese, and African pharmacopeia as laxative, anthelminthic and abortive. Fruit is useful in gout, rheumatism and sub-acute cases of the spleen and liver. Doctors in India are so confident of bitter melon's positive effect on diabetics, they dispense bitter melon in some of the most modern hospital.

Other sites mention that it really lowers blood sugar and is used to treat diabetes.