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Omg...i Might Be On To Something

Rachel--24

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confusedks Enthusiast
confusedks
Posted

Julie,

I'm sorry you're having a rough day. :( I am too for some reason today. I am still severely nauseous. I can't stand being so nauseous and then I take something, but then I sleep for 4 hours! ;):lol: Can't win.

Everyne,

Does anyone know what mycoplasma pneumoniae is? I tested positive for it. Is it really pneumonia? Is that right? :o

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Rachel--24 Collaborator
Rachel--24
Posted
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rachel, i remember seeing a few pages back you said you had a list of essential tests to have done that some doctor gave you, can you post it if you see it? i know you said you posted it somewhere in here, but i don't think going through 672 pages is possible :lol:

Oooops...I totally thought I had reposted this. :huh:

Sorry April and Rpm.

Ok...heres the whole list of goodies from my alternative LLND (Dr. Amy).

My goals for this talk:

Show you some other factors that we have discovered with ART testing that can interfere with your recovery from Lyme

To discuss some non-antibiotic treatment options that can complement your care.

What is ART?

ART is

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
What kinds of things did you experience when you were reacting to the charcoal?

Julie,

My typical reactions of head swelling, pressure, burning eyes, etc.

Once my system gets overwhelmed I'll react to pretty much anything. Its not like the charcoal is a problem for me...but I'll still react to it at times when my system is in overdrive.

I think its similar to what you go through with your angio attacks....but different. Ok...so that made no sense...but you know what I mean. :P

Anyway, going back to a topic I was researching back toward the beginning pages of the thread...it still seems to be a histamine problem for me.

I know this is also related to angio....but the question is why so much histamine??

Some foods can bring on immediate "attacks"....which for me would be swelling of my blood vessels that is actually visible. I can feel the pressure and the pulsing in the veins...and they are usually bulging. Other symptoms are swelling, burning, pain, headache, inflammation, etc. The worst symptoms are in my head but theres stuff going on throughout my body...including my gut....which can lead to weightloss.

Its pretty consistent as far as which foods can cause full blown reactions....while others may contribute a little at a time...until I've reached my tolerance. Its histamine content in the food. Fermented stuff is totally out of the question for me...I came to the conclusion that this is why I cant tolerate any yogurt or kefir.

Then there is also the perfumes and environmental sensitivities which also cause a release of histamine.

I'm not sure if this is all occurring because of liver toxicity...and when my liver gets particularly overwhelmed everything just boils over and the reactions are constant until things settle down.

OR...if I'm unable to eliminate histamine effectively...so that if I'm not careful it builds up and then I'm reacting to everything.

I guess these 2 possibilities could be occuring simultaniously....with one causing the other.

The other thing is that my immune system could be reacting to some of the things in my body...the metals, yeast, parasites, etc. This could probably cause a constant excess of histamine....which would get worse with any flare-ups....with foods and other things contributing to the total load.

I did have the tests for high histamine which didnt tell me anything...but this is definately histamine that I'm dealing with. I just dont know which treatment is gonna be the one to resolve it. I'm gonna talk to Amy about this at my next appt....see if theres any way to determine what will help it the most. This is probably the only symptom that I'm really stuck with...but it causes swelling, pain, brainfog, blurred vision, edema, etc..

This week I've had an increase in the inflammation...and I'm wondering if its a result of increased toxicity from my parasite treatment last weekend. <_<

Even though I didnt feel anything at the time...I'm sure it had to have had some effect. Either that or it could be that I've experimented with a few "bad" foods this week...ignoring the high histamine content. It could be a combination of both.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Hi Claire!!

Thanks for the update. I was wondering how you've been.

I'm sorry that things didnt work out with your ART practitioner. I've been very happy with Dr. Amy. All of my LLMD's bring something to the table...but she brings it all together for me...with ART.

I'm pretty sure that at some point in my recovery I'll do something with everything I've learned on my "journey"....I have no idea what though. Lots of possibilities have been mentioned in the past...I would like to find a way to take the most valuable info. and put it all together. It would be alot of work but one of these days I'll be up for it. :)

CarlaB Enthusiast
CarlaB
Posted
Carla, (and I think Mia?) on the Levaquin did either of you have nausea? I have been really struggling today and wonder if it is that.

Sherry

Yes. I had to take Prilosec ..... in fact, Prilosec is supposed to make the Levaquin work better according to Dr. B. I took it every day I was on the Levaquin .... well, after I figured out I felt so much better taking it.

Julie,

I'm sorry you're having a rough day.

Me, too.

Everyne,

Does anyone know what mycoplasma pneumoniae is? I tested positive for it. Is it really pneumonia? Is that right? :o

I think it's just the name of the bacteria. If you had pneumonia, your lungs would be filled with fluid .... this is an educated guess.
Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Julie,

I have a shower filter. OMG...I totally love it. I think I got it early last year...it probably needs to be changed by now. I used to smell sulfur or chlorine but now the water feels clean and unsmelly. :)

I run the shower to fill up my bath.

Unfortunately, I never put one here at my moms house...which is where I'm at all week. :rolleyes:

I got a bath ball for my moms house....but its kind of a PITA...so I dont ever use it. I guess I'm lazy when it comes to stuff like that....I dont wanna spend 2 minutes swishing some ball through my bathwater :rolleyes: ...I usually get in well before the bath is even full.

AndreaB Contributor
AndreaB
Posted
One of those days where mole hills seem like mountains......

I'm sorry Julie. :(

Kassandra,

Yay on the trampoline. :D

Rachel,

Thanks for posting that talk of Dr. Amy's.....I copied it over.

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author

I'm really sad because the autistic boy at my work got terminated. :(

My boss had to let him go...too many complaints and he said the "F" word to a customer. :(

He could have stayed but only if a job coach could stay with him for his entire shift...everyday....which just wasnt possible. :(

He did have someone with him for the last 3 weeks until they could figure out if there was any way they could arrange this permanantly...but there wasnt any way. :(

So yeah...it sucks! :angry:

He was doing really well for like a month after I told him to avoid cheese. Then he was eating cheese again and all heck broke loose. Lately I havent noticed any dairy but I have no idea what he eats at home...plus he still eats gluten anyway.

When things arent going well you can see it...the bad excema, the runny nose...plus all the complaining about aches and pains...other times his skin is clear and hes mostly happy.

His job coach said that he noticed in the past 3 weeks that he's fine in the morning but after lunch he kind of falls apart. Yeah...thats what I've been saying for all these months!

When I mentioned autism to him he totally disminnsed it...just like he's dismissed my thoughts about food intolerances. He said he's not autistic...he's mentally retarded. :huh:

Yeah...that really irritated me!! :angry:

So his last day was sad...and it also happened to be his birthday. We had cake for him, balloons and me and my boss got him a DVD...cuz he LOVES movies. He gave me lots of hugs and kisses...said he was sad, sad, sad...and that he'll miss me and everyone else alot. :(

I dont think he totally understood but he did know that he "quit" his job and he was sad that he wasnt coming back. He loved the little party we had for him though. :)

So...I'm gonna miss that little guy. :(

aprilh Apprentice
aprilh
Posted
Some foods can bring on immediate "attacks"....which for me would be swelling of my blood vessels that is actually visible. I can feel the pressure and the pulsing in the veins...and they are usually bulging.

Yes - that explains it perfectly!! That's what I was getting from the Humaworm! And I get that if I am just in a toxic state.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Yes - that explains it perfectly!! That's what I was getting from the Humaworm! And I get that if I am just in a toxic state.

April...its the "big head syndrome"...thats why I knew exactly what you were talking about when you described your reaction.

I hate big head syndrome!! :angry:

Well for me...I'm pretty much always in a toxic state...but there's a definate correlation between an even higher state of toxicity and an even bigger head!! :lol:

Too bad there is no big head emoticon...he would be used frequently by me. He would be about twice the size of this guy. :) Most likely big head emoticon guy wouldnt be smiling though. :P

Donna may not recognize me once big head syndrome improves. :lol:

Sometimes I am not feeling extremely toxic yet certain high histamine foods...like saurkraut, vinegar, yogurt, etc...will totally trigger the big head syndrome. When I'm feeling really toxic usually my skin is more pale and just doesnt feel or look right.

mftnchn Explorer
mftnchn
Posted

Micoplasmal pneumonia is what is known as "walking pneumonia." I've had it once, it was not fun. It is not as severe--like with your lungs filling with fluid, but I was plenty sick with it.

Carla, I am extremely sensitive to Prilosec, and several other acid blockers. Prilosec gave me severe muscle pain. So I guess I am stuck with this.

confusedks Enthusiast
confusedks
Posted

Aww Rachel, that's so sad about your autistic "friend." :( At least you tried to do what you could do. :)

Sherry,

It's interesting, because I keep saying to my mom how extremely congested I have been, but I'm not eating dairy--which is what usually congests people. I wonder if this is the problem. It's already on my list to ask Dr. H about when I see him. :)

Everyone,

When anyone gets glutened, how long do your symptoms last? I am really starting to realize that when I get glutened (which I did on Tuesday AND Wednesday) that my symptoms last for at least a few days. Here we are on Satruday/Sunday and I'm still feeling really sick. I have only felt this way since I went out to eat on Wednesday night. It must have been the food. *sigh*

The nausea is so bad that I couldn't even take any supplements this evening because I can't even swallow water. I couldn't even take my anti-nausea med! :lol:;) That's when you know it's a problem. I told my mom I wish I had my PICC line in so we could just do IV Zofran....that stuff works like a charm! Oh well.

mftnchn Explorer
mftnchn
Posted

Julie sorry you're down too, and you, Kassandra. Hope we are all better soon.

miamia Rookie
miamia
Posted
Micoplasmal pneumonia is what is known as "walking pneumonia." I've had it once, it was not fun. It is not as severe--like with your lungs filling with fluid, but I was plenty sick with it.

Carla, I am extremely sensitive to Prilosec, and several other acid blockers. Prilosec gave me severe muscle pain. So I guess I am stuck with this.

I did and do get nauseu from it. I refuse to take any acid blocker ever again so don't worry we can tough it out together!!!!

Miamia

miamia Rookie
miamia
Posted

Is everyone else having this new board format? It is really confusing and annoying!!!!!!!!it makes reading the posts so much harder in less there is something i am not getting

jerseyangel Proficient
jerseyangel
Posted
Is everyone else having this new board format? It is really confusing and annoying!!!!!!!!it makes reading the posts so much harder in less there is something i am not getting

Hi Mia :)

Try this--scroll up to the upper right corner of this page and hit "options". Make sure yours is set to "standard". Hopefully, that should fix it.

miamia Rookie
miamia
Posted
Hi Mia :)

Try this--scroll up to the upper right corner of this page and hit "options". Make sure yours is set to "standard". Hopefully, that should fix it.

Oh jersey angel- you are an angel-it worked.

Phew.... How are ou.

I love your new picture

miamia Rookie
miamia
Posted
Julie,

I have a shower filter. OMG...I totally love it. I think I got it early last year...it probably needs to be changed by now. I used to smell sulfur or chlorine but now the water feels clean and unsmelly. :)

I run the shower to fill up my bath.

Unfortunately, I never put one here at my moms house...which is where I'm at all week. :rolleyes:

I got a bath ball for my moms house....but its kind of a PITA...so I dont ever use it. I guess I'm lazy when it comes to stuff like that....I dont wanna spend 2 minutes swishing some ball through my bathwater :rolleyes: ...I usually get in well before the bath is even full.

Rachel-

I need a shower filter.

I do have a bath ball. Its easy I put it on the faucet and just run the water through it, what do you mean about the 2 minute thing?

jerseyangel Proficient
jerseyangel
Posted
Oh jersey angel- you are an angel-it worked.

Phew.... How are ou.

I love your new picture

Glad it worked for you :D

I'm doing pretty well, thanks. How about you?

aprilh Apprentice
aprilh
Posted
I'm really sad because the autistic boy at my work got terminated. :(

Maybe you could write to his parents and explain the food connection?? They may be open or may not, but at least you tried, right? Its so sad that these kids aren't being given every chance to be well, whether that is by going gluten and dairy free, or looking into chelation, ect. The mainstream medical does not talk about advice about this connection. So these children (and parents) will suffer for it.

AndreaB Contributor
AndreaB
Posted

Kassandra,

Sorry you're still not feeling well.

Rachel,

I like April's idea.......not sure it would work, but you never know.

mftnchn Explorer
mftnchn
Posted

Mia have you found anything that helps with the nausea?

dlp252 Apprentice
dlp252
Posted
We bought a mini trampoline today!!! :D YAY!!! I am going to go set it up and maybe try to "rebound." Is there anything special I need to know?

You may want to try several short sessions in the beginning instead of trying to stay on for one longer period. For instance, the first day do 5 minutes, then later do another 5 minutes, etc. See how your body feels, then gradually increase the time each session. My feet were the most bothered when I first started...they got used to it and I'm able to stay on for up to 45 minutes when I'm mentally able to do that, lol.

One of those days where mole hills seem like mountains......

Aw, sorry hope today is better!

Donna may not recognize me once big head syndrome improves. :lol:

Somehow I think I will STILL recognize you, lol!

Sorry to hear about the autistic boy!!!! That is really sad.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel-

I need a shower filter.

I do have a bath ball. Its easy I put it on the faucet and just run the water through it, what do you mean about the 2 minute thing?

I think once the bath is full you're supposed to swish the ball through the water for a couple minutes before getting in...at least thats the way it is with mine. But I'm too lazy.

Maybe you could write to his parents and explain the food connection?? They may be open or may not, but at least you tried, right? Its so sad that these kids aren't being given every chance to be well, whether that is by going gluten and dairy free, or looking into chelation, ect. The mainstream medical does not talk about advice about this connection. So these children (and parents) will suffer for it.

His family isnt really looking for treatment options. They consider him mentally retarded. They werent really of any help trying to work with us on how to improve his behavior at work. Its unfortunate but now he will be going through a special program with classes on behavior and such. He'll be with other kids with similar challenges and he'll also be given a job through that program. Hopefully he is happy and is able to benefit from it.

JenAnderson Rookie
JenAnderson
Posted
When I mentioned autism to him he totally disminnsed it...just like he's dismissed my thoughts about food intolerances. He said he's not autistic...he's mentally retarded. :huh:

I really hate that... I had a boss that actually called me "retarded" in front of a customer after he found out I had Asperger's.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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