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Rachel--24

Omg...i Might Be On To Something

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there is a convention here this weekend called "raising healthy kids in a toxic world" and they are talking about Autism, Add, nutritional and natural approaches, toxins in vaccines, mercury,ect. I think they said Holly Robinson Pete was going to be there too.

They had some info on NPR - National Public Radio if anyone is interested. I am going to try and go.

And my hubby actually listened to the radio broadcast and has shown a little more openess. ;)

Sounds real good. I'd like to hear all about it.

Kassandra, good luck with the GI tomorrow! I'll be thinking about you and hoping that this gets resolved quickly.

Dang.....its just one thing after the next....but yeah....you are definately one strong girl! You'll get through this. ;)

Pericardial effusion?? :huh:

Ditto.

Another update... My hematologist called and my ferritin is at 5. It drops about 2 points a week at this point. Especially because I'm supposed to get my period soon. So my hema wants to premedicate me and give me a different Iron IV.

I told Dr H and he was like "noooo, not this again!" He is going to talk to the hematologist tomorrow so hopefully they will come up with a game plan.

Dr H said it sounds like my GB needs to come out...I've been having wrong looking urgent D. Dr H said that I'm ruining his football season! :lol: LOL!

He wants me to keep him updated so he can give his input every step of the way. Thank God he's so dedicated! :)

I'm glad you have a dedicated doctor too. Hoping they can come to an agreement with the iron IV's. I'm a little paranoid about you having more of those after what happened last time.

Keep us posted as you are able......or through Carla. :)

Paula,

Kids just don't think do they? :angry: Hope you get over this quickly.

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I feel like an excalator, i have my up moments and lots of down momemnts. It changes all the time lol. After 2 hours of finding hte mold, i felt great again. Now i woke up all congested and tired and brain fogged.

Im afraid to do the coffee enamas causei read people who are severly anemic should not do them and im anemic. So i think i might hold off awhile on them.

paula

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Thanks, Sherry. I'm not feeling too great. I'm weak and my temp is slightly elevated, not enough to call a fever (98.9).

My jaw also hurts. Strange, it hasn't hurt or cracked since I got it fixed. It seems as if I'm going backwards through all the symptoms I had originally. I've been reading about this phenomenon - it's called retracing. Interesting. If I weren't living through it, I wouldn't believe it.

I've heard of retracing before, but it's generally because someone is going on some kind of cleanse, usually something radical. I didn't think it could happen from taking away mold exposure, but it seems to be. Jaw pain and D were two of my first symptoms. Air hunger was near the beginning, too, but that has already flare and seems to be gone now .. well, mostly gone ... at least I can always get a satisfying breath now.

Anyway, I was surprised to wake up to my jaw hurting and cracking. I'm wearing my mouthpiece I wear at night to keep it in place and more comfortable.

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Sherry,

Interesting link.

Nora,

Thanks for letting us know what pericardial effusion is from.

Carla,

That's interesting about retracing. Hope you continue through these as a fast clip so you're not too uncomfortable.

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pericardial effusion is like having too much fluid around the heart. Or too much fluid in the pericardial cavity.

Can come on with viral infections, other infections or inflammatory conditions. Good thing is that it could go away on its own especially when these other situations are under control. Sounds like the lyme, co-infections and the other conditions could be contributing to this situation. That's my hope for you Kassandra - that it will go away on its own!

Kassandra,

If you get a chance try to read up on this article that Sherry posted about being anemic. Maybe your body will require a different approach to building the iron back up.

The majority of children with neurological and psychiatric conditions look pale and pasty. When tested, they show various stages of anaemia, which is not surprising. To have healthy blood we require many different nutrients: vitamins (B1, B2, B3, B6, B12, K, A, D, etc), minerals (iron, calcium, magnesium, zinc, cobalt, selenium, boron, etc.), essential amino-acids, and fats. These children are not only unable to absorb these nutrients from food

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Interesting about the anemia and bacteriae.

I have always read that the body hides iron in case of infections, because iron feeds bacteriae. Now you list what kind of bacteriae like iron...I guess more than those listed like iron too. (I guess they actually feed on iron)

About pericardial effusion, this can come from different things of course, and hypothyroidism is just one of the possibilities. There even was a series of articles about a mystery disease on bmj, and it was about a hypo patient and she also had pericardial effusion as far as I remember. She was anemic from blood loss because of heavy menstrual bleeding and almost died due to complications during the hysterectomy. The doctors were supposed to write in and guess what was causing all her problems.

Elevated liver numbers is also a hypo symptom.

nora

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I just had some ecoffee .... feeling SO much better! I guess it took a bit of the toxin load off. I also took a Norco because of the pain in my upper back, shoulders, and jaw. It wasn't the fibro pain ... the fibro pain is usually a left-sided pain (common in Lyme) .... this pain is more evenly left and right, except for the jaw which is right side only (as usual for my prior TMJ issues).

But anyway, maybe I'm getting though the end of this?

I can say, I don't feel "Lymie" and I'm not having any babs symptoms either. Could this five year nightmare be ending for me?

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But anyway, maybe I'm getting though the end of this?

I can say, I don't feel "Lymie" and I'm not having any babs symptoms either. Could this five year nightmare be ending for me?

Could be. Yay! :D

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Yes, maybe it is coming to an end! If so we'll all celebrate with you and hope to be not far behind, LOL!

I read about retracing last year because it seemed like I was going through that with gluten-free. However, it didn't signal the end for me.

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I bet you are coming to the end of the nightmare carla. YOu deserve to be at the end of the nightmare.

I made it threw 2 football games. I am so proud of myself. But I am now at home feeling like crap causei forgot to eat today. Dang hypoglacemia lol

paula

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Sherry, you may have done some retracing at the point you went gluten-free. You just still have more to do. :(

It would be totally amazing to be done. I've dealt with Lyme about my whole life, but have never been sick like I've been the past five years. It's funny that I almost went to the ER yesterday (and probably should have) and today I went to choir practice. :)

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Ok....bad news. I have to have my GB out on Friday...only because they couldn't fit me in tomorrow. I have a fever and severe diarrhea (can't eat...) so they're worried it's infected. I'm not very happy needless to say. They don't even want to run more tests because my symptoms are so severe that they said there's no point, we already know I have stones.

They are concerned about a stone being stuck in the duct which can require open surgery which is a whole other procedure than just the laproscopic GB surgery. So they're going to have my GI dr (who I met today and was SO SO nice!!!!) in the OR ready just in case I need the second surgery. They don't know until they get in there and look at it.

I went to the GI Dr's office, and he diagnosed me with Celiac, officially! He said that he also thinks I'm IgA deficient because I'm so immunocompromised, so he ordered tests for that. He's also testing for C. Diff because of the very watery, urgent diarrhea, but that could be from the GB too.

He was the nicest guy ever!!! He said he was so excited to take on my case because I'm challenging. I LOVE to hear that!! He also wanted to talk to Dr H right away to discuss me because he has questions, etc. and he is overall interested in my well being. :)

He examined me and then sent me right over to the surgeon's office. The surgeon was like "you've been through a lot...you're a champion!" He was so sweet! :wub: They were both so nice, I'm so glad they didn't give me a hard time about anything! Even the GI Dr didn't tell me to stop the abx because possible C. Diff.

I'm really searching for the strength to get through all of this, I have a funny feeling about this all. I don't know what, I just feel like something is off. We'll see. I will email or text Carla so she can update you guys.

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I will email or text Carla so she can update you guys.

I'll be looking for updates and thinking of you.

Sounds like you've got some good doctors. Hang in there! :)

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Sherry, you may have done some retracing at the point you went gluten-free. You just still have more to do. :(

Yes, I think there has been some going on. I think all the factors have been very complex for me and we are still figuring it out. I think the gut stuff is major. I'm trying to tackle some possible mold sources too.

It would be totally amazing to be done. I've dealt with Lyme about my whole life, but have never been sick like I've been the past five years. It's funny that I almost went to the ER yesterday (and probably should have) and today I went to choir practice. :)

ER :o:blink: Choir :P:lol:

Sherry

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Ok....bad news. I have to have my GB out on Friday... I have a fever and severe diarrhea (can't eat...) so they're worried it's infected. I'm not very happy needless to say.

Kassandra, Oh no!!! I hate hearing that you have to have surgery. I know that the GB infection is not something to ignore though. Just wish you could have avoided this and guess it is probably related to something else out of balance.

So hope that there isn't a stone stuck in the duct...I know they can only know when they get in there.

I went to the GI Dr's office, and he diagnosed me with Celiac, officially! He said that he also thinks I'm IgA deficient because I'm so immunocompromised, so he ordered tests for that.

He was the nicest guy ever!!! He said he was so excited to take on my case because I'm challenging. I LOVE to hear that!! He also wanted to talk to Dr H right away to discuss me because he has questions, etc. and he is overall interested in my well being. :)

Very cool. Glad that has happened and that he's on board.

I'm really searching for the strength to get through all of this, I have a funny feeling about this all. I don't know what, I just feel like something is off.

I hope you will listen to yourself and see if you can identify what the funny feeling is. Sounds as if your team of medical people will listen. Maybe call your therapist too to talk through where you are at with all of this.

I remember hearing this idea about how we support one another and have "community." It was like we are all holding the edge of a trampoline helping the person who is jumping. None of us here can "jump" for you, but we sure want to lend support. Hang tough, kiddo. I'll be watching for new.

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This is from Dr. Shoemaker's website, www.biotoxin.info

Begin cholestyramine (CSM) or Questran treatment. We have found that CSM powder works best. Many patients experience an intensification of all or some symptoms with CSM therapy. If Lyme disease is diagnosed, treatment with Actos is considered, since the mobilization of the Lyme biotoxin is especially hard to endure for many patients. Actos helps to prevent the cytokine storm and prevent TNF and MMP9 from increasing. Actos is not risk free, so with this, or any other information on this website, please consult your care provider.

My PA didn't prescribe Actos because of it's effect on blood sugar. The symptoms today are what my doctor has told me are a cytokine response - achey, tired, might have low grade fever (took temp yesterday, but not today). So, I was reading on this to see if it's an expected response. I guess it is.

Yesterday I felt better after ecoffee, so I'll try that today and will try to take some glutathione as well to see if it helps.

Anyone know how to reduce the cytokine storm (besides Actos)? The only thing I know to do is take a painkiller. Norco worked very well for it yesterday. I am also getting a lot of rest, slept nine hours straight last night!!! I've been resting all morning.

BTW, my jaw cracked and hurt for quite a while yesterday. It's better today.

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Carla. sorry about your Jaw pain. Jaw pain sucks.

Rachel, are you still taking no-phenol and the enzymes? Do you think that they work better for you with the restricted diet you're on, or diet alone?

Im going to try the failsafe diet recommendations, because Ive been having cravings, and reactions all week for some reason. I started taking B6 B12 fish oil, co q 10. I think the B vitamins are causing some bloating. But I feel better mentally.

Thanks

C

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Aw Kassandra...I'm so sorry about the GB!!!!

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More info regarding mold detox, http://www.amazon . com/gp/blog/post/PLNKNIDCEHCJZ50F (take out the spaces)

Paradoxically, however, cholestyramine can exacerbate inflammation in Lyme disease sufferers, so if you opt to take this toxin-binder, you may also need to add an anti-inflammatory to the mix. (And this may be a good idea, anyway, since taking a toxin-binder is likely to only partially remedy the inflammation problem). Dr. Shoemaker prescribes Actos, another medication, to reduce inflammation, but Dr. Loyd notes that Actos can exacerbate symptoms in those who are underweight or have low leptin levels. A better choice, writes Loyd, would be one of the following products: UltraInflamX, Kaprex, KaprexAI, BioticsKappArrest. Those products containing the acronym, "Kapp" in their title inhibit NF-kappaB, a messenger that causes the release of inflammatory cytokines, and are safe, natural alternatives to Actos.

The whole article is interesting. :) I'm ordering UltraInflamX from my doctor today ... it's not a prescription, but it's only available through doctors, and my doctor carries Metagenics.

I'm getting a massage today at 2. :)

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