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Rachel--24

Omg...i Might Be On To Something

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:( Me too, one way or another it has been years and these days if I get a moment or hour of a relatively pain free body I dance around the house. <_< It has become the norm.

I am at the point where I would be grateful for any kind of diagnosis that could lead to treatment, Lyme doesn't scare me anymore, and given my history I will be surprised not to receive a Lyme diagnosis, not knowing is making me feel crazy. :(

Rinne...how much longer until you get tested?? I soooo hope this is the answer for you. I feel like I can say that even though we're talking about Lyme Disease...I know exactly how you feel and you DO get to the point where nothing scares you anymore. To me the most terrifying thing in the world is never finding out a cause for all of this...Lyme is nothing in comparison to the fear of the "unknown".

I was just telling someone yesterday...before I went to my appt....I was saying that all my life I had a fear of fires. My biggest fear was getting trapped in a fire....not even THAT scares me anymore. I think I've already been to hell with this and nothing scares me anymore because of that.

I dance around the house on my good days too...I may not ever feel totally normal in the past 4 years but I definately have hours where I'm feeling great in comparison to what I've gotten used to feeling. I go back and forth....some days I have the radio blasting in my car, window down, happily singing along. Other days I'm more zombie like...no singing....feeling really drained...but for me the radio is always blasting...even if I'm "barely there". :rolleyes:

Have you been tested for parasites before?? You could very well have them...we get more vulnerable to parasites when our immune system is down...so it could definately be that the salt/vit C is ridding your body of them. I dont really know though. :unsure:

I have the blurry eye problem too....it seems like the more toxic I am the blurrier they get. Even exposure to perfumes can cause some temporary blurriness....I experience it daily at work. :(

I just wanted to say that my eyes welled up with tears, seeing that you potentially have SOME answers. I know its not a great answer, but at this point, as you know, an answer is an answer. I can't tell you how happy I am for you...this gives me hope that you will get better.

Thank you Laura....you're very sweet. :)

Its funny but the truth is...I am happy today...really happy. Even the people at work who are all perfectly healthy must have some inkling to how hard this has been for me. They were all sooo excited for me. Not a single person was acting as if it was a BAD thing to have Lymes Disease! :blink: I was thinking that only those of us who are experiencing this can possibly relate to the feeling of needing an answer....no matter what the answer may be. Apparantly even those who are healthy can understand how terrible it can be to not know whats making you sick and to have to wonder each day if the answer will ever come. I could just see how excited everyone was for me and it just made me feel even better about things. :)

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I agree that if we are really ill that detoxing must be done carefully. I've read that cilantro oil is used to pull mercury from the body but that it is important to take chlorella with that so that the chlorella takes the mercury out of your body and it is not reabsorbed through a leaky gut. I'm seeking professional help with this, I've become very wary of health food store remedies and my own ability to figure it out.

Is is cracked chlorella? I haven't bought any yet.

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Sorry, I haven't heard of cracked chlorella but if you find out more I would be interested in knowing. :)

Rachel, I am glad for your happiness. My tests are next week so I am thinking possibly three weeks until some results from them but I also keep reminding myself that Lyme is a clinical diagnosis and the tests may not show it. It's Limbo Land. :(

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Rachel, I am glad for your happiness. My tests are next week so I am thinking possibly three weeks until some results from them but I also keep reminding myself that Lyme is a clinical diagnosis and the tests may not show it. It's Limbo Land. :(

Yeah...the tests might not pick it up but then again...you could get an even more positive result then what I had. Also Igenix has that other test they've developed....I would think you'd be getting results back from that too. My results for that test were positive. I'm gonna keep my fingers crossed for you Rinne.

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I tried adding in Vitamin C last night and got a reaction. I was pretty sure it was gonna happen because before I took it I noticed it had Rosehips in it. Last time I took vit. c w/ rosehips I got alot worse....it was more than a year ago though. Since it had been so long I thought I'd go ahead and try it. I reacted almost immediately....burning sensations mainly on my face and also my eyes. I was really feeling it and after awhile I started wanting ice cream really bad...I felt like it would help and sure enough it killed the reaction. :o

I had previously thought the problem with rosehips was salicylates....its extremely high in salicylates and should be avoided in all supplements if intolerant to salicylates. I'm almost positive thats what caused the reaction. I have to find some Vit. C. that doesnt have anything else in it. I think this is one of the reasons I have so much trouble with supplements....they all have herbs and those are all really really high in salicylates.

The salicylate intolerance is specifically mentioned in my mercury toxicity book.....its because of mercury interfering with the enzymes. I dont know if Lyme alone can cause this problem so I'm thinking its good that the Dr. is gonna find out if mercury is an issue along with Lyme.

I dont know how I'll get better if I cant take any supplements because of things like salicylates, sulfites and glutamates. This would all be coming from enzyme dysfunction. :(

I'm gonna call the Dr. about it.

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I tried adding in Vitamin C last night and got a reaction. I was pretty sure it was gonna happen because before I took it I noticed it had Rosehips in it. Last time I took vit. c w/ rosehips I got alot worse....it was more than a year ago though. Since it had been so long I thought I'd go ahead and try it. I reacted almost immediately....burning sensations mainly on my face and also my eyes. I was really feeling it and after awhile I started wanting ice cream really bad...I felt like it would help and sure enough it killed the reaction. :o

I had previously thought the problem with rosehips was salicylates....its extremely high in salicylates and should be avoided in all supplements if intolerant to salicylates. I'm almost positive thats what caused the reaction. I have to find some Vit. C. that doesnt have anything else in it. I think this is one of the reasons I have so much trouble with supplements....they all have herbs and those are all really really high in salicylates.

The salicylate intolerance is specifically mentioned in my mercury toxicity book.....its because of mercury interfering with the enzymes. I dont know if Lyme alone can cause this problem so I'm thinking its good that the Dr. is gonna find out if mercury is an issue along with Lyme.

I dont know how I'll get better if I cant take any supplements because of things like salicylates, sulfites and glutamates. This would all be coming from enzyme dysfunction. :(

I'm gonna call the Dr. about it.

Rachel-

this is one of my biggest problems I cannot seem to tolerate any of the supplements or meds that are supposed to help me heal. Even the most benign things seem to bother me. I ahve found a few things I can toleerate and I take them everyday but they don't seem to be enough to do that much. I also can't handle vitamin c even in the purest forms. It stinks becaus eit has alot of beneficial properties and is supposedly helpful if you are having a reaction to food or something else.

Thank you so much for your encouragment in your other post.

Miamia

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Hi miamia--nice to see you! I don't take suppliments anymore, because I've yet to find one that won't cause a reaction. They seem ok for a few days, then the old symptoms come right back. I've tried so many--stating that they're free of every possible allergen--but it make no difference. So, I've just stopped trying them!

Rinne--I'll be keeping my fingers crossed for you, too. :) You've also spent more than enough time in 'limbo land'. (and I got the name right! :ph34r: )

Rachel--what the heck was I going to say??? Oh yea, I think it's quite possible that the first bite you got--the one with the strange mark--could have been the one that started this. I'd also be interested in what your doctor says about the suppliment issue. I've asked mine--no clue. Just the deer in the headlight look <_<

Laura--Get some rest today :)

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Good morning to everyone!

Rachel, I'm so glad to hear the change (yes I can hear it, lol) in your posts...you definitely seem VERY happy and excited!

Laura, so sorry you weren't feeling well yesterday!

***

Supplements...it's funny about supplements, I seem to be able to take some of them okay, until I stop for some reason...then I can't take those anymore. What I mean is, that I react to a lot of supplements right off the bat, but sometimes I come across one that doesn't seem to bother me, so I'll take it regularly for a while...if I have to stop taking it for any length of time...for instance when I was taking my Vit C I had to stop taking it a couple of weeks ahead of my surgery in January...then start taking it again, it causes me to react. What the heck is up with that, lol!? :P It happens on all kinds of supplements.

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Oh Laura :( you poor thing. First a big *hug* for you! :) It must be so difficult for you right now with everything that is happening--and you're all alone there. I wish I lived closer--I'd come over, make you some tea and help you unpack (I'm very good at unpacking--I've had a lot of practice :D )

Yes, you will find an answer to all of this. Quite possibly, this new doctor will be able to listen and give you recommendations--I hope so :) Also, remember, you are a smart, capable woman and you will figure this out. I know it ;)

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Such hope and encouragement in OMG today.....looks like light at the end of the tunnel! :)

Just a drive-by....wanted to send a big hug to Laura...hang in there, sweetie, and I am definitely thinking you ARE going to get into the dr. at Johns Hopkins.....that will be great....but no more unpacking today and plenty of rest! Hope you feel better soon.

:)

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Laura, I am sorry you are having to struggle with so much right now. I hope that you can find the answers and treatment for your illness.

These days I see Lyme everywhere. :)

I knew whatever this was it was taking everything from me....sucking the life out of me....I would think about how my life was before this happened. I would focus on getting that back...every single time I thought of giving up I would think about all I'd lost and about how badly I wanted it back. The only way I could get my life back was if I found out why this happened...thats why I've been sitting in front of this computer...endlessly searching for the past 2 years. Who knows...maybe this isnt the end for me yet...hopefully it is but if not....its definately given me a whole lot of HOPE.

Rachel, I told a friend recently that I felt like the "life was being sucked out of me". Unfortunately she suggested that I was over reacting. :huh: There are days when I simply want to lie down and give up, I think life hurts too much and I am tired, sad, in too much pain and don't have the strength to keep trying. Given that I am teary now this just might be one of those days. :ph34r::lol: Maybe not. :) Then I drag myself up and try to do something that will make me feel better, this morning I went off to yoga and that helped.

Now it is time to put some Ruthie Foster on the stereo and do a little dance, maybe if I dance the "happy" will arrive.

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Rachel,

I hope one day to post like you are (having an answer).

Something that made me think (and I don't know your full history, but I know you have cut out a ton of foods, so I'm sorry if its not applicable) is that a lot of vitamins are corn derived (I know vitamin E is one of them, among others.) So if corn is a problem for you, that might be why you are having trouble with certain supplements. Hope this helps a bit.

I was horribly sick yesterday and last night...just rolling out of bed. I've been ordered by my mom and husband to stop unpacking and spend the day trying to find a doctor in the area who has a clue. I told her about you, Rachel, and she wants me tested for Lyme via the "right" lab...I was tested back pre-Celiac but I'm sure it was not the right lab. She also wants me to see an immunologist because of the potential of chronic mono (and related issues). I had mono and was positive for both CMV and EBV (which, I believe, started this whole ruckus.) I must say, I'm so sad right now. I'm supposed to start my new job (a great, wonderful CAREER job!) on Monday and I just don't know how its going to happen.

Laura

Hi Laura,

Thanks for the tip about corn. We covered corn pretty extensively at the beginning of this thread because at that time I had thought I was "on to something" with the corn intolerance....it turned out not to be corn for me. Its always good to bring up these things again though because it might be the answer for someone else whos reading and doesnt know that corn is in *everything*.

As far as corn goes....I will react to all processed corn ingredients such as corn syrup or corn starch. Its really not the corn itself that I react to. I came to the conclusion that its because of two reasons...first processed corn ingredients contain sulfites...actually just about everything thats processed contain sulfites. Same goes for alot of meds and supplements. Sulfites are everywhere which wouldnt normally be a problem... only if you are intolerant or have something else going on that may be causing sulfites to reach toxic levels in the body. I think thats whats going on in my case. I react to sulfites so its very likely that that would be the reason I would also react to corn syrup...its nothing to do with corn.

The second thing is MSG...(free glutamates).

MSG (yeah..the bad stuff they put in our food) is usually made from corn because corn is very high in natural glutamates. Natuaral glutamates (bound glutamates) arent bad for you...its only when they process the natural stuff and the glutamates are no longer "natural" or "bound"....the glutamates then become what is essentially known as MSG. Its another thing that has made its way into all the processed food, most all meds and supplements and a whole bunch of other stuff...including dairy products. If for some reason your body has stopped being able to process this chemical...it could be yet another reason for reacting to nearly all things processed.

I have never been able to fully determine whether MSG is a big problem for me or not. Its in almost all the same stuff sulfites are in so its hard to know which I'm reacting to. Most people who are extremely sensitive to MSG will also react to Aspartame and sulfites. I think the cause is the same...enzyme dysfunction. Since I know I react to sulfites and aspartame...I'm sure MSG is on the list for me too.

I can eat fresh corn as long as its organic without any problems at all. I eat organic popcorn (that I pop myself) almost everday and its one of the few things that causes no reaction whatsoever. It took me a couple months to figure out whether corn was an issue or not but if you can eat fresh organic corn....you're probably ok with corn....as long as its not processed and loaded with chemicals.

I'm glad you're family is giving you a break from the unpacking to look for some help with this. If you do find someone to test you for Lyme...make sure its Igenix. All I'd heard online was that the other labs are useless and my Dr. told me the same thing. He said the mainstream doctors arent diagnosing anyone with Lyme because they are using far less sensitive labs. Instead the Dr's are mistaking Lyme symptoms for things like Fibromyalgia, arthritis, CFS, etc.

I'm sorry that you're having a rough time. :(

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Laura,

Hugs to you! Prayers for you getting into Hopkins and seen soon! Get your rest and take care of yourself. I too, wish I lived closer to you so I could help you out. :(

Rachel,

Can you find Vit C without rosehips?

Rinne,

Thoughts and prayers will be with you. Please remind me when you appointment draws near. Looking forward to you getting some answers too.

Donna, Patti, Susan, Julie, Miamia, Lindalee, Evie, Judy and everyone else.......Good morning/afternoon. :)

We get our allergy test results on Tuesday.

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Rachel-

I haven't been posting lately but I have been following. I am so happy for you to ahve gotten to the bottom of things hopefully- you give me hope that one day I will get to the bottom of what is wrong with me. For now I'm still struggling to figure it out

Miamia

MiaMia, just want to express how sorry I am that you are struggling, have been struggling, with all of your health issues and trying to make sense of it all. Support and hugs to you, hang in there, and keep fighting- I beleive the answers are around the corner!!! Please let us know how you are doing.

:( Me too, one way or another it has been years and these days if I get a moment or hour of a relatively pain free body I dance around the house. <_< It has become the norm.

I am at the point where I would be grateful for any kind of diagnosis that could lead to treatment, Lyme doesn't scare me anymore, and given my history I will be surprised not to receive a Lyme diagnosis, not knowing is making me feel crazy. :(

The Salt/Vitamin C treatment seems to be having an effect, this is too gross but I think there are parasites in my ****. :ph34r: My balance has improved also and my eyes don't seem quite as blurry although occasionally they still are.

rinne, same for you :) I'm glad that your spirits are good enough to dance around the house! I believe that that is so important, no matter how bad things are, how bad we feel, to do something that reminds us we are alive and we can overcome, dancing, singing, smiling, laughing, whatever works :lol:

Good to hear the vit C/salt treatment is still going well, and interesting effects at that.

Also wanted to tell about my neck problem, got it resolved!! A few months ago I decided my pillow could be a problem so started rolling a hand towel for just shoulder to neck, pain gone. Told Dr., said that works!! Not sure why, but sure a relief!! Have a good day all. evie

Hi evie! Glad to hear your neck is doing better. I have heard that too, that the best thing to sleep on is a rolled towel, or neck roll style pillow. It supposedly supports the neck and spine in a correct alignment. Hope it continues to work for you :)

Laura- keeping my fingers crossed for you as well that you will get in to the doctor and get to the bottom of things. You hang in there too :)

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I just wanted to note here that Aspartame, Splenda, MSG, etc are all made from corn or using corn derivatices and can set off anyone who is allergic to corn.

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Yes, you will find an answer to all of this. Quite possibly, this new doctor will be able to listen and give you recommendations--I hope so :) Also, remember, you are a smart, capable woman and you will figure this out. I know it ;)

Laura, I agree with Patti :)

In one of your first posts you wrote that you would do anything to feel better...you didnt even care what foods you had to cut out...just as long as it made you better. Thats something I must've said a million times and I know I would have never given up on something this important to me....I dont think you'll give up either. I think you'll figure it out and you'll get better....just like Patti said. :)

These days I see Lyme everywhere. :)

Yeah....I know what you mean. :unsure:

I read thats its now the second most widespead infectious disease. Its only second to AIDS. I was thinking its very likely it could be spreading much faster than AIDS....just underdiagnosed. The test for AIDS arent questionable....they KNOW how to diagnose AIDS....its a whole other story with Lyme.

Look what I've had to go through....I've probably seen about 40 doctors, 2 years off work, a gazzilion tests, noone taking me serious...and NOW after four years.... I just find out that I "probably" have Lymes Disease. Its still not even confirmed!!

They tested me for AIDS....no problem...it was ruled out with the one bloodtest. I'm thinking Lyme has gotta be #1. <_<

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I can eat fresh corn as long as its organic without any problems at all. I eat organic popcorn (that I pop myself) almost everday and its one of the few things that causes no reaction whatsoever. It took me a couple months to figure out whether corn was an issue or not but if you can eat fresh organic corn....you're probably ok with corn....as long as its not processed and loaded with chemicals.

Same for me Rachel, I can eat corn on the cob, tamales, and corn tortillas with absolutely no problems. So corn is not a problem for me. The heavily processed stuff is however.

Such hope and encouragement in OMG today.....looks like light at the end of the tunnel! :)

:lol: Susie

My feelings about all of this can best be expressed by the words of the song "Let the Sunshine In" by The Fifth Dimension, you know the song I am talking about?

Everybody sing..... rinne you can dance........

:lol::lol:

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I just wanted to note here that Aspartame, Splenda, MSG, etc are all made from corn or using corn derivatices and can set off anyone who is allergic to corn.

I totally agree...but if the person can tolerate organic corn on the cob or organic popcorn kernals....they probably arent reacting to corn....its the chemicals. It is more common to react to aspartame, msg and splenda than it is to react to corn. MSG and Aspartame are neurotoxins and can cause all sorts of problems. Not sure about Splenda cuz I've never looked into what that can do. Corn in its purest form.....well its just corn. I think the most simple way to determine a corn intolerance would be to eat corn in its purest form and see what happens. If nothing happens but yet you react to everything else thats "derived" from corn....its probably the chemicals.

Of course if someone is IgE to corn....then they shouldnt eat it....period.

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Now it is time to put some Ruthie Foster on the stereo and do a little dance, maybe if I dance the "happy" will arrive.

Rinne - who is Ruthie Foster? :)

I so understand how you feel at times....glad you got out to yoga.

Rachel - such scientificness today! I always love reading it, esp. the MSG stuff - - because as we know my brain is like a SIEVE adn I have to read things about 10 times to retain anything. :angry::(

I just wanted to note here that Aspartame, Splenda, MSG, etc are all made from corn or using corn derivatices and can set off anyone who is allergic to corn.

okay....a friend recently told me she read an article in The New YOrker - I have searched and not found it yet - about the accidental discovery of fake sugars. The inventor of same was working on PESTICIDES and ended up with....fake sugar. :o This guy said he in fact would never eat the stuff....and it is pure evil. anyone know anything about this? I"ll see if I can get the article from her. I have always thought real sugar (or fructose, a single sugar and even better) is much better for us than these evil chemical sugars....

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OMGosh I wish I could give you all a group hug...I'm feeling huggy this morning!

Laura, I just feel so badly for you!

Miamia, and Rinne, you too!

We are all going to get to the bottom of this! I was just thinking the other day that I used to have so much energy and used to really want to get out and do stuff, not so much any more! It's so much of an effort!

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Rinne - who is Ruthie Foster? :)

Yeah Rinne.....who is she?? :unsure:

I LOVE dancing in my house!! :D Well....actually I love dancing anywhere but lately its just been in my house. <_<

I'm glad you got up and went to yoga Rinne! Way to go...it always makes me feel better to get up and do something.....sometimes its really hard to force myself....but in the end its always worth it. It never fails to make me feel better.

Music, positive thoughts, a little physical activity....its all soooo beneficial. I used to think all that stuff was just hogwash (did I just say hogwash? :blink: ) but yeah....it really does work!!

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