Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

aprilh Apprentice

is today Donna's Surgery?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
AndreaB Contributor

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.

Rachel--24 Collaborator

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. <_<

Nanjkay Apprentice
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

CarlaB Enthusiast

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

confused Community Regular

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

paula

AndreaB Contributor
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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Nanjkay Apprentice
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

confused Community Regular
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

Rachel--24 Collaborator
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.

Rachel--24 Collaborator
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. :)

mftnchn Explorer

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

Rachel--24 Collaborator

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

Rachel--24 Collaborator
European strains of borrelia are different, right? Maybe co-infections too.

Here's a recent article on that... Open Original Shared Link

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".

CarlaB Enthusiast
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.

Rachel--24 Collaborator
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.

nora-n Rookie

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

AndreaB Contributor

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.

Nanjkay Apprentice
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

Judyin Philly Enthusiast
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

Rachel--24 Collaborator

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

confused Community Regular

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

Nanjkay Apprentice
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

tabasco32 Apprentice
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?

confused Community Regular
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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,963
    • Most Online (within 30 mins)
      7,748

    AlissaW
    Newest Member
    AlissaW
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.