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Omg...i Might Be On To Something


Rachel--24

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AndreaB Contributor

For anyone interested.......This video does touch on the cumalative effects of mercury/MMR-autism/aluminum-Alzheimers

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AndreaB Contributor
Hugs to all!

Hugs back to you. :wub:

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mftnchn Explorer

Julie, right now my sense about the detox baths is that it stirs things up for sure. So my guess is that it both mobilizes the toxins and helps you get rid of some. But sounds like it is easy to overdo, and that we need to make sure we have what we need to bind toxins. I am going to try again, but do half the amount (1/4 cup total, of a mix of salt, soda, and epsom salts). Sounds like that is a lot less than Donna was trying. Rinne was it you who said you got migraines? How much were you using?

Also I am going to try starting with lots of extra water before, and the spirulena I just bought, plus cilantro, and charcoal to help bind the mercury. And I think I won't take the baths during the flagyl days or DMPS days when things are more active already. Don't know if this is a good plan but am going to try it once. Also will carry my trusting syringe on my travels, and do the saline rinses as I need them if I get congested.

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mftnchn Explorer

Hello, mtndog...thanks for the update. I can relate to the lyme combo and how wiped out during those early months of treatment. Glad you are in the process and it does get better.

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NoGluGirl Contributor

Dear Patti,

I agree that gifts from heaven are being sent to Donna! :) It is wonderful! If the church can help, why not? Everyone knows something or someone for a reason. She should take them up on their offer! God sends good things our way.

Dear Donna,

Your friend sounds like a wonderful person! I would just explain the house was a mess, and I was too embarrassed for her to see it. People understand when you are sick. No one has the energy for everything anyway! If the church is able to help you fix up the condo, that would be terrific!

I know exactly what you are describing with the Charlie Brown rain cloud. :( That really is a fitting term for it. I am so frustrated by feeling as if everything is made to make my life more difficult. The supplements could be contributing to the funk, but at least you seem to be doing a bit better than you were. Any improvement is good!

Dear Rinne,

I did not know detox baths could trigger migraines! :o Thank you for the warning! I get migraines as it is. Anything else adding to them would not be good. I will be sure to not overdo it to be safe if I do decide to do the baking soda or epsom salt baths.

Quackwatch makes me so angry! :angry: They discredit or attempt to do so to every alternative therapy, supplement, or method of healing. I am sure the FDA is trying to defame these things so that they can build their drug empire. The FDA does not want to heal anyone, but make them sicker so they can keep getting them hooked on pills so they can make more money. Kevin Trudeau says this in his book. Others can say he is full of crap if they want, but I agree with him completely.

I am sorry you are feeling rough lately. Is it possible to go through withdrawal from oxalates? Since you can have it from gluten, I do not see why not. Detoxing in any form can be difficult for the body at first. Each substance that is addictive or has negative effects is likely capable of doing so.

Dear Rachel,

I am not surprised at all about the FDA attacking stevia now. Anything they cannot regulate and make money from must disappear! <_< When they put Vioxx out on the market, they knew many people would die. They also knew by the time it was figured out how dangerous the drug actually is, they would make hundreds of millions of dollars from them. For many people, it was too little, too late.

Quackwatch is something that is completely useless to me. I ignore it. The FDA does not want anyone being healthy and never taking prescriptions. If that occurred, they would be broke. It is truly frightening how deadly so many of the products the FDA allows out on the market are. As you pointed out, the real quacks are usually the ones trained in traditional medicine.

It is nice that there are finally people openly advocating autism! :) Jenny McCarthy has done her homework, and is shouting it to the world! Mainstream medicine is very bad in general. Most physicians are complete morons. Then also tend to think they are better than everyone else on the planet, as well as smarter.

If they are so intelligent, why are so many of their patients not getting well? Vaccines, environmental pollution, metal dental work, casein, gluten, yeast, Lyme, and other hidden factors contribute to autism. One of these days everyone may finally know about it, and the population of autistic children will go down. Perhaps even Alzheimer's patients will decrease in number. Any type of dementia doctors do not know what it is, they diagnose as Alzheimer's. They did that to my grandmother.

The thing is, there are over 200 different forms of dementia. :blink: I cannot figure out why this would be, considering the fact the symptoms are the same for all of them. They medical community always complicates things. :rolleyes: I believe my grandmother does not necessarily have Alzheimer's. The reason is due to the fact they ran a scan on her brain. There were no plaques or tangles that are diagnostic criteria specifically to Alzheimer's.

I am going to check your posts on the oxalate thread! I have not gotten to read them yet. This will be very interesting. I have been wanting to learn more. Some of what I looked up in research really did not tell me much of anything.

Dear Julie,

McCarthy is beginning a revolution. Someone needed to get the wheel turning. Autism and the medical community's willing ignorance concerning it needs to end. Knowledge is only useful when applied. So many doctors blatantly refuse to utilize new information.

This is why so many Americans are chronically ill. I am tired of suffering from doctor's errors! Everyone else who is dealing with chronic ailments are, too! I am happy someone is standing up and saying "No more!" Finding the source of the disease is the only way to treat it and eradicate the health issues from it.

Dear Judy,

You are welcome for the recap! ;) When you are busy, that is your best bet! My eyes are very strained a lot, so I try to save others from that in case they missed something. I get to be on my computer more than some of the others, and that helps. There is usually a lot to reply to, and keeping up can be difficult.

Dyslexia is something that is ignored. Learning disabilities often are neglected in schools. My brother is mildy handicapped. When he was born, the oxygen was cut off by the umbilical cord wrapping around his neck three times. He suffered mild brain damage in the area of his brain that is used for mathematical functions. My parents had to fight long and hard just to get him the assistance he deserved.

I am infuriated by how poorly schools deal with individuals having ADD, ADHD, dyslexia, and other learning disabilities. My best friend has ADD, and teachers just shoved her off on someone else, and refused to help her. When we were children, she struggled just to make Cs, while everything came easily to me. Teachers acted like they could not have cared less. By the time she went to college, things did not get any better.

My other best friend has a brother with ADHD. He is smart, but gets distracted. The foreign language teacher actually told his parents at the parent-teacher conference that she did not believe he was intelligent enough to take Spanish! :o

How rude is that? I had this teacher and was a star pupil, but knew she was a snob back when I had her. If you could make a list of things that make you want to smack people, that would be on it!

What is worse, many students' lives are ruined by such teachers. They hear year after year from them how they are not smart, and cannot amount to anything. After so long, they begin to believe those awful words. Cruelty such as this has a lasting impact on a person. Many people who had that experience in school will not go to college or shoot for their dreams, because they do not think they are capable because of what they were told. :(

Dear Susie,

I am glad they do not actually use those terms in England! It would be so terrible! Do they ever say someone is off of their onion anymore? I heard that once. At least it is amusing to hear, if nothing else! :lol: If you want a good idea of how Americans actually speak, watch the Sopranos!

That is great my idea helped you figure this out! Carbohydrates are very important to serotonin production. Blood sugar getting low is enough to make the serotonin dip a lot. The only way to relieve it is to eat something that raises your glucose levels. Now the zinc deficiency and other things are beginning to make more sense in why you have been in such a rotten mood lately.

Dear Andrea,

I am going to PM you my e-mail! Posting had to come first. You will probably not be up right now, anyway. It is two hours behind us in Washington! I am curious as to what Seth's report said.

Poor Mitch! Work being slow certainly does not help anything. This is always problematic. Having to cut the food budget more must really be getting to you. Vegetables really are important to eat more of!

Bread may have irritated M's system. Candida really stirs things up. I get D and cramping if I eat gluten-free bread with yeast. The gluten-free, yeast-free rice loaf is what I can have. I am getting ready to try Chebe. The trouble is finding a grated cheese that does not have yeast in it!

Dear Bev,

Machine Gun Spice! :o We have missed you so much! It is so wonderful you pooped in to say hello! I heard you have been on the Silly Thread mostly. Laughter is always good medicine!

I cannot believe all of those nasty co-infections you have. How awful! I hope I do not have all of those, too! Right now, attempting to get the testing done is first. The rest must be dealt with after that.

Dear Sherry,

Going with less of the solution sounds smart. Detox baths can really wipe you out. They do stir things up. Slow and steady wins the race. I think you are onto a good plan.

Cilantro, spirulina, and charcoal might really help draw out the bad stuff. Just make sure not to do too much at the same time. Your body cannot deal with drawing out too many toxins at the same time. Caution is best. Preparing your system slowly for it is most beneficial.

I have a question about Lyme for you. Did you used to get worn out after a hot shower? Standing up in the shower makes me so tired! Is this normal? I know the mold in there does not help, but worry there is more to it.

Sincerely,

Jin

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covsooze Enthusiast

Hi Jin

I'm like that with long hot showers too. I figured it was for the same reason as with hot baths ie dehydration and detoxing. <<shrugs>>

Susie

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ami27 Apprentice
Jin, just had a quick surf and your hunch was correct, zinc deficiency is related to low serotonin production. Light bulb moment! Will try to research more later and let you know what I come up with. Thanks again :D

Susie,

Try searching for tryptophan and serotonin. I'm taking tryptophan and getting really good results. My doctor prescribed it to me for adrenal fatigue, to help with sleep. I never had a problem sleeping, but now it seems my sleep is more restful and beneficial. I'm also feeling better overall which is probably the serotonin increase that I needed. I'm not sure if it's available for you. It seems 5-HTP can be used also, because tryptophan is converted to 5-HTP in the body. It's also found naturally in foods, but I'm still not sure if you could get a beneficial amount through diet. Thought it was worth a mention since you're researching serotonin.

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dlp252 Apprentice

Thank you one and all for the words of encouragement!

I feel like the rain has lifted...the cloud may still be following me, but it stopped raining. :lol: I'm pretty convinced it had something to do with the ALA. I have all the same problems and issues, but feel much lighter about the whole thing.

I wasn't happy about our move, but it's not really so bad here...I sit directly outside the office of a girl who has also worked here a long time...she was happy that she has some company over here, and at one point I noticed that when I look up I can see trees (I was stuck in an inside office with no windows before). I told her how excited I was that I could see outside so she said she'd leave her door open for me. :D Then at one point she closed her door for a phone call...when she opened it I had a :( face...so we've decided to take a nice digital photo of the trees and when she has to close her door, she'll put up the picture. :lol: :lol:

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ami27 Apprentice
I feel like the rain has lifted...

I'm glad to hear you're feeling better. I hope the cloud goes away soon also!

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jerseyangel Proficient

Donna, It's so good that things are looking up--and now when you look up, you can see trees! :D

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Judyin Philly Enthusiast

Jin.....you making it possible for me to keep up........thanks so much you sweet thing you!

Dear Patti,--

how did the house inspection go? think you put it was happening on this thread :blink:

Dear Donna,

--so happy the rain is gone and just 'clouds remain' lets hear if for windows looking out on tress.

""""Your friend sounds like a wonderful person! I would just explain the house was a mess, and I was too embarrassed for her to see it. People understand when you are sick. No one has the energy for everything anyway! If the church is able to help you fix up the condo, that would be terrific!"""""" good points............your church lady will understand and a short note from you would probably make her day...older folks love mail.

Dear Rinne,--

""" I am sorry you are feeling rough lately. Is it possible to go through withdrawal from oxalate's? """"""""""""""YES YES YES,.CK ROBBINS' D/S AUG 17 TH POST...I THINK RENNI HAS DONE THAT ALREADY. HANG ON RENNI

Dear Rachel,--

YEP RACHEL...RIGHT AGAIN..VIOXX WAS MY 'SILVER BULLET' THAT ALMOST KILLED ME...LUCKY MY DR OF 25 YEARS PULLED ME OFF IT EVEN BEFORE THE INFO HIT THE NEWS...HE READS UP ON THE DRUGS HE GIVES HIS PATIENTS...LUCKY ME

"" I am not surprised at all about the FDA attacking stevia now. Anything they cannot regulate and make money from must disappear! <_< When they put Vioxx out on the market, they knew many people would die. They also knew by the time it was figured out how dangerous the drug actually is, they would make hundreds of millions of dollars from them. For many people, it was too little, too late.""

JIN--

"I am going to check your posts on the oxalate thread! I have not gotten to read them yet. This will be very interesting. I have been wanting to learn more. Some of what I looked up in research really did not tell me much of anything."" PLEASE COME AND READ...IT'S SO GOOD

Dear Julie,

hi THANKS FOR CHIMING IN ON THE JENNY THREAD..MISS YOU

Dear Judy,--

"""""""" Many people who had that experience in school will not go to college or shoot for their dreams, because they do not think they are capable because of what they were told. :( """ SO TRUE..THAT'S WHY THE PARENT ADVOCACY ==IS THE TO ME ===THE MOST IMPORTANT KEY.

TOLD JASON he'd never go to college and he graduated with a 3:5 GPA...so proud of him.......and us too as parents.

Dear Susie,

"" Blood sugar getting low is enough to make the serotonin dip a lot. The only way to relieve it is to eat something that raises your glucose levels. "" good info thanks

Dear Andrea,

I am curious as to what Seth's report said. Poor Mitch! Work being slow certainly does not help anything. SORRY YOU AND I ARE SO OUT OF TOUCH. PRAYING FOR YOU ALL

Dear Bev,

Laughter is always good medicine! YEP THAT'S OUR BEV.

I cannot believe all of those nasty co-infections you have. How awful! DITTO BEV.. :angry:

Dear Sherry, HI DON'T KNOW YOU SO JUST WANT TO SAY 'HI'

THANKS JIN.........ONLY TAKEN 1/2 TO DO THIS W/O YOUR OUTLINE...I'D BE LOST.

THANKS HONEY--JUDY

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AndreaB Contributor
I wasn't happy about our move, but it's not really so bad here...I sit directly outside the office of a girl who has also worked here a long time...she was happy that she has some company over here, and at one point I noticed that when I look up I can see trees (I was stuck in an inside office with no windows before). I told her how excited I was that I could see outside so she said she'd leave her door open for me. :D Then at one point she closed her door for a phone call...when she opened it I had a :( face...so we've decided to take a nice digital photo of the trees and when she has to close her door, she'll put up the picture. :lol: :lol:

That's so nice of her to leave her door open as much as possible for you! The picture is a good idea too. :) Glad you're feeling a little better. :)

HI JUDY!

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Rachel--24 Collaborator

I just got back from the worst Dr. appt. I've had in nearly 2 years. :angry:

The only reason I didnt walk out in tears is because I *know* that I dont have to rely on these arrogant I-dont-know-anything-but-I-wear-a-white-coat-and-pretend-to-know-it-ALL... idiot mainstream Dr.'s to get better.

Yeah....it sucked to say the least. :rolleyes:

I had terrible flashbacks leaving there....its no wonder I was depressed and suicidal back then. :(

I have an even greater appreciation for my own Dr.'s now. :)

I seriously wanted to punch this Dr. the entire 5 MINUTES that I spent with her!! :lol:

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jerseyangel Proficient
I just got back from the worst Dr. appt. I've had in nearly 2 years. :angry:

I'm so sorry :(

Now, take a deep breath :)

What the heck did she say to you :huh:

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AndreaB Contributor
I just got back from the worst Dr. appt. I've had in nearly 2 years. :angry:

I ditto Patti. Why did you go to this doctor?

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jerseyangel Proficient

Rachel? :unsure:

Where'd you go?

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happygirl Collaborator

A local news station has done two stories on Lyme Disease. Neither of the doctors interviewed are my docs.

Part 1: Open Original Shared Link

Part 2: Open Original Shared Link

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Rachel--24 Collaborator
Rachel? :unsure:

Where'd you go?

Patti...I went to my current moronic conventional Dr. :rolleyes:

I think I need to switch to one thats a little less moronic.....there must be someone out there in that field that doesnt suck. :unsure:

I wanted to find out about the Aspergillus. This is the third time I've researched it but I never end up following through on it....this time I want to pursue it and treat it.

My Dr. in Washington is the one I really want to see but I dont know when shes coming down and I'm impatient....as usual. :ph34r:

My Dr. who did my LED's is in Florida for some Cancer treatment training.

I called Dr. S and have been waiting for a call-back.

I decided to go to the mainstream Dr. so I can get a CT scan or an x-ray....to see if anything shows up.

So I go there and they have me see a nurse practitioner in training. Yeah...like this person is really gonna be able to help me. :lol:

Then after I tell her my whole story she updates Dr. Know-It-All....who comes in and spends all of 5 minutes with me. About 3 minutes were spent totally downplaying my symptoms, telling me I "look great" and telling me there IS NO WAY I could have an aspergillus infection and be sitting there *looking* totally fine.

Then the last couple minutes she spent bragging to me and the trainee about how she knows EVERY pharmacy in the area's address and phone number by heart. OF COURSE SHE DOES!!! :lol:

Isnt that what she does ALL DAY LONG....fill out prescriptions to treat *symptoms*. :rolleyes:

So yeah...she sent in a freakin prescription for some steroid nasal spray which I'm definately NOT gonna pick up.

So the trainee must of informed her about my wanting to rule Aspergillus in or out. The first thing she said when she walked in was..."If you had Apergillosis...let me tell you...you would have BLACK eyes and BLOOD coming out of your nose!!" :blink:

"You definately DONT have Asergillosis because I've SEEN it before and you would NOT be sitting there right now...you would be in BAD shape. You would be DYING!!!"

"Ummmm....well I've done quite a bit of research on it....read case histories...I've seen pictures... I'm familiar with the symptoms and I've NEVER come across anything saying that you must have BLACK eyes and BLOOD coming out of your nose??" :unsure:

So then she gets in my face and says " Have you ever SEEN someone with Aspergillosis...BECAUSE I HAVE!!"

So yeah...theres no way I could have it because yes...I admit...I do not have BLACK eyes...nor have I ever had blood coming out of my nose the entire time I've been ill. So I guess thats totally ruled out now. I dont have Aspergillus. :rolleyes:

WTF-EVER :lol::lol:

So THEN she says "Now you might have Canada (and NO..that is not a typo...she actually said "Canada"). :huh:

She said I *might* have canada...definately not Aspergillus but could be canada because there are some people out there that think that could happen...that canada can travel around the body. Then she shrugged and rolled her eyes.

So thats pretty much why I wanted to punch her. :P

BUT she did order the CT scan...which is all I really wanted anyway. I just had to suffer through it to get the freakin test ordered.

It was a miserable experience and it totally brought me back to when I was dealing with that stuff non-stop for 3 years...but it only took me a couple months to run out of room in my bathroom for all the drugs I was given. :rolleyes:

So now I'm just praying that I can get a positive culture of Aspergillus to PROVE to the idiot Dr. that it can happen without black eyes and bloody noses. :P

I have to see an ENT for that but first I gotta get the CT scan out of the way. I had a CT scan almost 5 years ago...they saw inflammation but never looked into the cause. :rolleyes:

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jerseyangel Proficient
...that canada can travel around the body.

Maybe somebody can travel around canada B) Don't know about the other way around, though <_<

OMG--no wonder you were so upset. Yep--I would have wanted to smack her one, too...I figured you went about the aspergillus. I didn't realize you'd already had a CT scan and they saw inflammation.

I guess at least you got your CT scan ordered--too bad you had to deal with an idiot :angry:

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Rachel--24 Collaborator

Ok...Dr. S. called me back. :)

I explained the whole story to him.

To get an aspergillus infection the immune system has to be compromised. I had told the nurse-in-training this....and that I suspected the mercury was damaging my immune system thus making me susceptible to infections.

She said if I had a bone marrow transplant or something like that I could be susceptible to Aspergillus but mercury probably couldnt do it...it would take ALOT of mercury to affect the immune system like that!!

Yeah...because mercury is not toxic at all...my immune system would not be stressed out by large amounts of the second most toxic element on the planet....how stupid of me to even *think* such a thing. :rolleyes:

So...Dr. S. said that YES...mercury would have made me very susceptible to *any* fungus or mold...because thats what mercury does...it allows for fungus to grow in the body.

Thank God not every doctor is clueless. :)

I explained what happened to me last week with the carpet cleaning chemical heinosity...he moaned...he knew right away it was bad for me. I told him that I have not yet recovered from that. I thought that I was doing ok because my head didnt hurt as much the next day and I felt alot better. Coming back to work this week I can see that this was a huge set-back.

I am not doing nearly as well as I was...I've become more reactive to everything and the swelling in my head persists...but not as painful as that first day. I think my immune system was kicked down a bit by the chemicals and whatever is living in my head totally flared up since that day. :(

The whole thing has made me more aware that there really *is* something going on in that area and the minute my immune system takes a hit...this thing takes off. :angry:

I told Dr. S about Anna's results pointing to Aspergillus as well as Amy's, Scotts and Dr. M.'s. Thats four people identifying that particular fungi.

I told him about the oxalates and the fact that when I eat those foods I am feeling the symptoms flare-up immediately...and in the sinus/jaw area. The same area that has been bothering me from the beginning. Everything else has improved or diminished but never this swelling that is in my head.

I told him that I had to research to find out what conditions would lead to this type of problem with oxalates and found that its related to fungi. Some fungi are oxalate-producing and Aspergillus is the biggest culprit.

He found that VERY interesting.

He said what he wants me to do is get a CT scan of the sinuses. I already took care of that so he wants to see me next week after the results are in. He said CT results only take a day. He wants to see if he can document the infection so he wants to run bloodwork as well.

I told him Anna already did bloodwork which came back neg. and Dr. M. said that Aspergillus is there..its showing up in muscle testing but the bloodwork is not as sensitive and less reliable. So he said he still would rather have documentation other than these pratitioners "saying" that its there.

He said fungi infections should show up in IgG testing. The problem with that is that I NEVER test positive for anything with IgG antibodies...and I was told my IgG production is too low. Even my candida results that were sky high were only positive with IgM antibodies.

I dont know if he's gonna treat me anyway so I'll have to wait till I see him. It sounded like he was gonna start me on antifungals specific for Aspergillus. I said "What if nothing shows up in the CT scan...then what??"

I was worried he would blow it off but he said that if nothing shows up it would be a "good thing" because it would mean that the infection will be easier to treat and that it isnt too severe. :)

I told him that up until the chemical exposure I had been doing really well and tolerating many things (except the foods)...and that I'm on DMSA now. He said that if I have an active fungal infection in my sinuses he does not want me continuing with chelation while thats going on.

I'm kind of "stuck" on where to go with that because mercury brings on fungal infections anyway. I can see his point though....and I'm wondering if moving mercury could allow the infection to become more invasive. :unsure:

I think I will hold off until I'm taking an antifungal targeting Aspergillus and then continue with DMSA.

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jerseyangel Proficient

I'm so glad that Dr. S got back to you. I think it does make sense to hold off on chelation--though I know you're gonna be impatient to get back going on it.

This could really turn out to be a big part of things for you :)

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Rachel--24 Collaborator
Maybe somebody can travel around canada B) Don't know about the other way around, though <_<

:lol::lol:

Patti...you cracked me up with that. :D

Yeah...I'm over it now and I've actually been having some good laughs about it. :)

I figured you went about the aspergillus. I didn't realize you'd already had a CT scan and they saw inflammation.

Yup...I didnt want to waste another minute because I've blown it off a couple times already. I think too many signs are pointing me in that direction cuz it keeps popping back up. Thanks so much for starting that thread which kind of forced me to look more into that connection. :)

Yes...in the first few months I developed severe pain in my forehead right above my eyes and between my nose. I had symptoms prior to that which were more systemic (either from the mercury or my Graves Disease) but the forehead/nose/eye thing was causing excruciating pain that I could not handle very well. It came on very suddenly right after my radioactive iodine treatment and antibiotics.

The pain was localized so I went to the ENT and I had the CT scan which showed inflammation but no blockage...so they just gave me a nasal spray.

They also did a CT on my eyes to check for thyroid eye disese (TED) which can occur with Graves. That showed mild inflammation but not related to TED.

Then they did an MRI on my brain to see if I had MS or brain tumor because my head pain was so severe.

So nothing was ever determined (other than coming to the conclusion that I'm a hypochondriach) and eventually the swelling and pain spread to my cheeks and ears. So basically most of my face hurts but it seems severe in the bridge of my nose and all around my ears. I think the inflammation in front of my ears is causing the jaw problems. All the glands are swollen in my head and neck.

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AndreaB Contributor
So now I'm just praying that I can get a positive culture of Aspergillus to PROVE to the idiot Dr. that it can happen without black eyes and bloody noses. :P

I have to see an ENT for that but first I gotta get the CT scan out of the way. I had a CT scan almost 5 years ago...they saw inflammation but never looked into the cause. :rolleyes:

This doctor sounds like a real trip. I'd be fuming too! :angry:

I told him that up until the chemical exposure I had been doing really well and tolerating many things (except the foods)...and that I'm on DMSA now. He said that if I have an active fungal infection in my sinuses he does not want me continuing with chelation while thats going on.

I'm kind of "stuck" on where to go with that because mercury brings on fungal infections anyway. I can see his point though....and I'm wondering if moving mercury could allow the infection to become more invasive. :unsure:

I think I will hold off until I'm taking an antifungal targeting Aspergillus and then continue with DMSA.

Sounds like a good thing to hold off on the DMSA until you get on something to target Aspergillus.

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Judyin Philly Enthusiast

Dear Rachel

Just getting on line.

Thanks for all the sad details :o:(:ph34r:

I too was shocked to see you'd been to the 'doctor' :blink: or the white coat idiot....

It's amazing what we have to 'suck up' to get test done we need to do.

God Bless you Rachel.

Your an amazing woman whom I so admire. ;)

hugs and love

Judy

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Rachel--24 Collaborator

Thanks Judy....I know I've said it before but you are AMAZING as well. :)

One of my favorite people who has never failed to brighten my darkest days. :wub:

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    • Fluka66
      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
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