Omg...i Might Be On To Something

[confusedks]

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! Can't win.

Everyne,

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

[Rachel--24]

  Rpm999 said:

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

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

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]

  juliem said:

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.

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]

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]

  mftnchn said:

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.

  confusedks said:

Julie,

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

Me, too.

  Quote

Everyne,

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

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]

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.

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 ...I usually get in well before the bath is even full.

[AndreaB]

  juliem said:

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

I'm sorry Julie.

Kassandra,

Yay on the trampoline.

Rachel,

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

[Rachel--24]

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!

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.

Yeah...that really irritated me!!

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]

  Rachel--24 said:

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]

  aprilh said:

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!!

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!!

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.

Donna may not recognize me once big head syndrome improves.

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]

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]

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! 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]

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

[miamia]

  mftnchn said:

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]

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]

  miamia said:

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]

  jerseyangel said:

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]

  Rachel--24 said:

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.

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 ...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]

  miamia said:

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

Phew.... How are ou.

I love your new picture

Glad it worked for you

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

[aprilh]

  Rachel--24 said:

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]

Kassandra,

Sorry you're still not feeling well.

Rachel,

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

[mftnchn]

Mia have you found anything that helps with the nausea?

[dlp252]

  confusedks said:

We bought a mini trampoline today!!! 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.

  juliem said:

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

Aw, sorry hope today is better!

  Rachel--24 said:

Donna may not recognize me once big head syndrome improves.

Somehow I think I will STILL recognize you, lol!

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

[Rachel--24]

  miamia said:

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.

  aprilh said:

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]

  Rachel--24 said:

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.

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.