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Rachel--24

Omg...i Might Be On To Something

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Yes, Donna's surgery is today.

Rachel,

Is your appointment in the afternoon tomorrow?

Birdy,

I hope it's not the sealants giving you problems. Dentists offices are also full of mercury vapors if the put in amalgams or do any other dental work with someone who does have them.

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Donna, hope all is going well with the surgery today. :wub:

Andrea.....yup its tomorrow when I get off work. :)

I agree about the regular dentists having lots of mercury vapor in the office. I cant see myself ever going back to one.

Whole foods did something to the brownies I was eating. They changed the recipe or added an ingredient (even though they didnt change anything on the label). I did a taste comparison with a previous batch and its all different...the taste, the texture, the appearance, etc.

Before I could eat as much as I wanted in one day....now I cant even have a couple bites without major symptoms. :(

I was doing really well with them in my diet....even though they contain both dairy and gluten....and sugar of course. :P

Just beef and peas isnt enough for me....I dont have as much energy and I get constipated. With the brownies I was totally regular. Now I dont know what I can add in to help with this. I think there's major sulfites in the brownies now. <_<

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Yes, Donna's surgery is today.

Hi everyone-

Been tolerating the computer better lately.

Wishing Donna good thoughts and I hope she recovers well. :D

Hi to Little Lymie, nice to meet you. :D

About the Mercury, where are we getting exposed if not only from the fillings and fish? Is there anything we Americans can do to cut down on our exposure?

Also, I am having a heck of a time finding a doctor that knows anything about the methylation pathways. Most of whom I am finding are the types that throw everything at the wall and see what sticks without doing the proper tests and these were the physicians I found through the DAN! lists. So far, none know about the tests you all talk about here and on the Yasko yahoo group and I don't know how to find a practitioner to help me.

I think have figured out that my Lyme infection is less of a problem than the residual damage as I am not herxing much with a pretty aggressive treatment. So, I want to start chipping away at the blockages and the mercury and then, what to do with my very large filling.

However, the Babesia is a huge problem and I think Sherry mentioned it as well, I sweat like a mofo (sorry), I get drenched. Dr. H did a hormone panel just to make sure it wasn't hormones (which are low, but not the issue). I am on Enula and I pulse Artemisinin and boy do I sweat. My tests for Babesia came back positive, but it showed that my immune system does not even recognize it. Who knows what that means. :(

I cannot think of an incident when I got sick like you guys can. I had health problems almost from the beginning of my life. It did get much worse and make me bedridden in 2006, but I would not call myself the picture of health up until that point. I think if you can pinpoint the trigger, it can help with the treatment.

I had big trouble with charcoal, it gave me instant IBS. But, occasionally I do well on Zeolite. Sometimes when I take it, the next day I have a great bowel movement and it feels like it takes all of the toxins with it. The only problem is that it doesn't happen often enough and not too much lately.

Hi to Carla - how are things going in Germany? Wanted to tell you that I really feel like I am in good hands with Dr. H as he is very thorough and conscientious, so thank you again.

Nancy

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Is donna going to contact anyone and let us know how she is doing. She has really been on my mind today.

paula

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Is donna going to contact anyone and let us know how she is doing. She has really been on my mind today.

I told her I'd call tomorrow. I figured she'd want to have the day to recoup and she may be out of it for awhile.

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Hi Nancy, things are going great! I'm feeling so much better! I'm glad Dr. H is working well for you. :)

Carla-

So the you're doing well and you're feeling the effects so soon, so quickly, that is WONDERFUL. It is also very encouraging for the rest of us as we contemplate taking a trip of our own.

Good luck and lots of well wishes. :D

Nancy

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I told her I'd call tomorrow. I figured she'd want to have the day to recoup and she may be out of it for awhile.

I remember now you said you were going to call her and also give her the short version of rachels appt tommorow lol. Tell her i was thinking of her and hope for an speedy recovery.

paula

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About the Mercury, where are we getting exposed if not only from the fillings and fish? Is there anything we Americans can do to cut down on our exposure?

Nancy....the mercury is in the environment (air, soil, water,). Some areas (like California) have higher levels of environmental mercury than other areas....but everyone is exposed no matter where you live. If you're susceptible to mercury toxicity because of a genetic weakness....then you dont necessarily need big exposures to become toxic. Also, if you have an infection like Lyme which impairs detoxification....you are more susceptible to mercury toxicity even without fillings. There are also various household products which contain mercury as well.

....and dont forget about the vaccines. I did get two vaccines (both containing thimerosal) about 2 years before I got sick. My Dr.'s have advised me to NEVER get a flu shot.

Also, I am having a heck of a time finding a doctor that knows anything about the methylation pathways. Most of whom I am finding are the types that throw everything at the wall and see what sticks without doing the proper tests and these were the physicians I found through the DAN! lists. So far, none know about the tests you all talk about here and on the Yasko yahoo group and I don't know how to find a practitioner to help me.

That sucks Nancy. :(

There's gotta be someone around there to help you...even if you have to travel a little?? How could a DAN! not be familiar with these tests?? :blink: I mean....this is what they DO!!

Then again...its not difficult to be certified as a DAN practitioner....so like anything else there are good ones and there are not so good ones. <_<

My doctor is very up to date on everything and goes to the various conferences, etc....he's pretty involved. Maybe Yasko's forum (or another autism related forum) would have a doctor section and you can ask about any knowledgeable doctors in your area?

I think have figured out that my Lyme infection is less of a problem than the residual damage as I am not herxing much with a pretty aggressive treatment. So, I want to start chipping away at the blockages and the mercury and then, what to do with my very large filling.

I have never herxed on any type of Lyme treatment either...I've only done herbs though...no abx. Even if I felt horrible on abx....in my mind it would mean that I'm not detoxing well. I would not necessarily see it as a good thing (especially if mercury is part of the problem).

However, the Babesia is a huge problem and I think Sherry mentioned it as well, I sweat like a mofo (sorry), I get drenched.

Babesia is a bigger problem for me than Lyme....but I actually dont get the night sweats at all. The only thing that brings on the night sweats for me is food. If I stick to the least problematic foods I never get the sweats.....but if I get crazy with the foods I will definately wake up drenched and freeeeeeezing. I think that anytime my body is struggling to detox I end up sweating alot during the night.

I cannot think of an incident when I got sick like you guys can. I had health problems almost from the beginning of my life. It did get much worse and make me bedridden in 2006, but I would not call myself the picture of health up until that point. I think if you can pinpoint the trigger, it can help with the treatment.

Even though I have an event that seemed to trigger everything.....the problems were already "brewing" (according to every doctor I've seen)....so it didnt just happen overnight....even though it seemed that way. Sometimes when people have an event that they can recognize as their "trigger" it might not actually be the real problem....so it can actually be misleading.

Anything can end up being the "straw that broke the camel's back"...but usually things have been heading in that direction long before the person becomes sick. Some people might end up focusing on the "event" ...totally unaware of any underlying issues they may have had all along.

Hang in there and dont give up on looking for a doctor....I think there must be someone around you who is good. I would try to visit the autism boards and look for parents who are in your area and who are getting these tests/treatments for their kids.

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Tell her i was thinking of her and hope for an speedy recovery.

Ditto to this.

Andrea, let her know that she's in my thoughts and I hope she's feeling good soon. :)

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My best wishes and thoughts to Donna as well, hoping everything goes really well and recovery is swift.

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Carla, how far is Heidelberg from Dr. W.? Is it close or did you travel? My friend lives 2 hours from Heidelberg. :)

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European strains of borrelia are different, right? Maybe co-infections too.

Here's a recent article on that... http://www.nhregister.com/articles/2008/08...lymestrains.txt

The way I understood it is that the same strains are found on both continents....including the one they believe is more difficult to treat.

In my opinion its more likely that the Americans struggle more because we have heavier toxic burdens....not just mercury but everything else as well...including the "Standard American Diet".

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Carla, how far is Heidelberg from Dr. W.? Is it close or did you travel? My friend lives 2 hours from Heidelberg. :)

I believe it took us about an hour to get to Heidelberg .... you might Google how far he is from Pforzheim .... plus, if you get the treatment, you want to be away from wireless internet as those who stayed in a hotel that had it had treatment failures. The EMF's reverse the photons.

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I believe it took us about an hour to get to Heidelberg .... you might Google how far he is from Pforzheim .... plus, if you get the treatment, you want to be away from wireless internet as those who stayed in a hotel that had it had treatment failures. The EMF's reverse the photons.

Do you have to avoid EMF's the majority of the time you're there...or just for a period of time following the treatment? Here at my mom's we unplugged the computer for 24 hours after my LED treatments....but it was only once a week for 24 hours that we had to do that. EMF's would also reverse the LED treatments.

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rachel, I am gonna bake gluten-free brownies today or tomorrow. Maybe you can bake some safe brownies.

latest news: I surfed by Connie's blog Lyme bytes at blogspot and if you look at the comments on the last blog entry , someone from california posted that her doctor got a bionic 880. I have read rumors of that before but now it is more official.

She also comments on the photon wave in an earlier entry. (she said treatment cost much but on lymenet someone posted it was very cheap and it was the fastest way to detox. It also says so on the rainbowflash website.)

nora

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Just sent out a very short update on Donna to those I have an email address for.

Anyone else, pm me and I'll send the update.

She's doing good and the surgery went well.

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Wow, there was a brownie that you could eat?!?! I'm so jealous! But I'm sad that they changed it up on you :( Maybe they have a new way of processing it now, that contains or creates sulfites? I don't know much about processing foods, so that really wasn't an educated guess at all. lol! That's just a bummer...

Don't know if this was mentioned but I use Trader Joe's gluten-free brownie mix and then use egg replacer for the eggs. It is DELICIOUS. The only grain used is rice flour.

Babesia is my big issue of the moment as well. I'm on 4 capsules of artemisinin a day, plus enula and it's getting to be a bit tough. Do you have other babesia symptoms, like the shortness of breath and air hunger? The air hunger is what's really getting to me right now. There are moments when I think that I have to go to the ER, but I don't because I know they can't do anything for me there.

The air hunger has really abated for me. I still get some shortness of breath. I do notice that if I am a bad girl with eating - like I have dairy or nuts, the air hunger comes back. I have been off yeast for a while now, but I do notice that yeast worsens the air hunger and tightness in the chest. Because I am doing herbs and anti-biotics, I now have raging candida and I am on both Diflucan and Nystatin - both temporarily, but I can tell you that some symptoms went away when I started those drugs.

I'm supposed to start zithromax soon as part of my babesia treatment...have any of you used that for babesia before? We don't have it yet because it's incredibly expensive and we have to pay everything out of pocket, but once we do find a way to get it I'll be starting it at half of a pediatric dose.

Zithromax killed my stomach...it was awful. In the past, I had done so much to try to heal my stomach and with the help of Zithromax, my stomach went back into full fledged IBS - nausea, sweats, feeling faint, cramps, gas, bloating. Many people have issues with this, so I am told. So, don't be surprised if you have issues.

I don't have insurance, so knowing that these drugs could be an issue, I ask the pharmacy to only give me a few days worth at first. I don't fill and pay for the whole thing anymore.

I am taking Artemisinin 200 mg - 3x a day Mon-Fri, then I take a break on the weekends. So, 5 days on, 2 days off. I am also on Enula from the Cowden protocol. I also take Olive leaf extract and Japanese Knotweed to try to boost the whole regimen. Who knows it is helping, I am exhausted all of the time.

Oh and thank you Nancy for your input on charcoal. I'm really not too keen on the idea of adding clay or charcoal to my protocol since I'm already struggling with IBS on a daily basis. I'm just going to pray that the metals aren't reabsorbing and that they are in fact traveling out of my body. I just did a stool test to see if they're showing up in there, so I can't wait to get that back! But you know, if it shows that the metals aren't coming out, maybe I'll think about zeolite...

Since you wrote the above, i was trying to find an entry from the CFS-Yasko group. A woman wrote about the exact phenomenon you all have talked about here. She explained in great detail how the metals, if they don't go out, get reabsorbed in the duodenum and that is why we get those terrible symptoms before a BM (I do at least). She was told to take tons of magnesium malate with charcoal (again, she was more technical) as a cleanse to make sure the metals were coming out and not getting reabsorbed. Anyway, not to get to disgusting, but I have been feeling yucky all day, then I pooped and voila, I feel much better. The Cowden protocol says to take Zeolite every third day, but I feel so good the day after I take it, I am wondering if I could take it more often. Also, I have upped my magnesium to tolerance (in other words, until poopage is possible :rolleyes: ) because I was getting constipated again (must be one of the herbs) and that has helped.

Nice to meet you too. :D

Nancy

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Just sent out a very short update on Donna to those I have an email address for.

Anyone else, pm me and I'll send the update.

She's doing good and the surgery went well.

Thanks Andrea

I so appreciate your update. Glad you still had my email

I'll be cking the OMG for Donna updates

Judy

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Quick drive by....

Hopefully I'll be in my right mind for my appt. today. :huh:

We have these halloween cookies at work...sooooo moist and yummy . I couldnt resist.....I'm really good about avoiding food colorings and such...but I just went a little crazy and ate everything including purple frosting and orange/black sprinkles. :rolleyes:

So yeah....I dont think I've stopped laughing since. :D

I'm so hyper....I need to get it together before I see Dr. P. in a few hours! :o

This might be a good day to bring my voice recorder. :P

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Andrea,

I pm;ed you my addy for the donna update.

Rachel,

Im so jealous of the cookies. I wish i could eat cookies again and be hyper. I have no energy the last few days.

Everyone,

I talked to my ND today and asked if i could maybe try cheese since i was negative on the stool test. She said i could in a small amount to see how i would react. She said dairy is not good for you anyway and she only eats it in a blue moon lol.

I have been eating pumkin seeds the last few days and im detoxing from them. They are really clenaing me out tho, so that is all good.

paula

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Nancy....the mercury is in the environment (air, soil, water,). Some areas (like California) have higher levels of environmental mercury than other areas....but everyone is exposed no matter where you live. If you're susceptible to mercury toxicity because of a genetic weakness....then you dont necessarily need big exposures to become toxic. Also, if you have an infection like Lyme which impairs detoxification....you are more susceptible to mercury toxicity even without fillings. There are also various household products which contain mercury as well.

....and dont forget about the vaccines. I did get two vaccines (both containing thimerosal) about 2 years before I got sick. My Dr.'s have advised me to NEVER get a flu shot.

You could not pay me enough to get a flu shot. God only knows what the vaccines did to us. I heard an awful story yesterday from my naturopath (who is in San Diego, we talk be phone and she was just at the Lyme conference with all of our doctors!) Anyway, she told me a story of twin baby girls who were getting their vaccines. The doctor (not the naturopath) confused them and gave two vaccines to one and none to the other. The twin who got the couble dose is now autistic, the other is normal. I fear that if a baby has Lyme in their system, when they get the vaccinations, the viral overload causes the Lyme to escalate and cause damage. I have read too many stories to not believe that there is a correlation for all of us between vaccines and what we are going through now. I mention this because in my Newsweek this week, a doctor wrote an entire book about how there is no connection. Anyway, I digress.

There's gotta be someone around there to help you...even if you have to travel a little?? How could a DAN! not be familiar with these tests?? :blink: I mean....this is what they DO!!

Then again...its not difficult to be certified as a DAN practitioner....so like anything else there are good ones and there are not so good ones. <_<

I am still searching. All three doctors that I called went to many DAN conferences, but again, I just think they play with the treatments to see what works without getting to the cause.

My doctor is very up to date on everything and goes to the various conferences, etc....he's pretty involved. Maybe Yasko's forum (or another autism related forum) would have a doctor section and you can ask about any knowledgeable doctors in your area?

What kind of doctor is this doctor? I think you mentioned before, but i forgot :rolleyes: Is there a way that I could get a referral from him? Maybe you could PM me his info and I could call and ask for counterparts on the East coast.

Hang in there and dont give up on looking for a doctor....I think there must be someone around you who is good. I would try to visit the autism boards and look for parents who are in your area and who are getting these tests/treatments for their kids.

Thanks for the words of encouragement. I put a request on the Yasko site, but so far, someone wrote to me to ask me for a doctor!

Nancy

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I have been eating pumkin seeds the last few days and im detoxing from them. They are really clenaing me out tho, so that is all good.

paula

Doesn't pumpkin seeds kill parasites?

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Doesn't pumpkin seeds kill parasites?

From what i have read on the net, yes they do. I always eat lots of them during halloween season. It is my favortie part of halloween. So after i started using the bathroom alot, i looked online to see if the pumkin seeds, were resposible for it. So i guess it just proves my stool test didnt pick up the parasites after all.

paula

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