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Rachel--24

Omg...i Might Be On To Something

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I got my Humaworm without psyllium and cascara sagrada, I am allergic to psyllium and it binds me up and I'm not a fan of cascara sagrada, but I am thinking I need to be on some sort of "laxative" while I take it. I'm wondering if I drank senna leaf tea every other day if that would be effective enough...anyone have any thoughts on this??

Rachel, what exactly is alinina (?) the parasite remedy you will be taking. Is it homeopathic, prescription?? Sorry if this is a repetitive question, I just skimmed over a lot of the posts so maybe you posted about this already.

Julie,

I read something in Dr. Buhner's book about LYme and it made me think of you. If you are interested I will post. It had to do with the Anaphylaxis you talked about the other day. I am having a brainless moment so I can't remember the exact wording you used, but he mentioned that in the book. And the herb Andrographis that he recommends for lyme is supposed to help this type of anaphylaxis.

I can post more later if you would like. You may have heard of this already or read about it, but I thought I would throw that out there just in case :).

April

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Julie,

I read something in Dr. Buhner's book about LYme and it made me think of you. If you are interested I will post. It had to do with the Anaphylaxis you talked about the other day. I am having a brainless moment so I can't remember the exact wording you used, but he mentioned that in the book. And the herb Andrographis that he recommends for lyme is supposed to help this type of anaphylaxis.

I can post more later if you would like. You may have heard of this already or read about it, but I thought I would throw that out there just in case :).

April

Yes, yes, yes April I am interested in this info!!!!

I have been researching the last 3 or 4 years, and more recently trying to find if there was a connection to lyme, a connection to anything, but haven't had much luck. And the people I have been dealing with...

as Rachel would say, MORONS :rolleyes:

Nobody knows what is happening with me!

Do you mean the name of the condition, angioedema, or something else I mentioned??

Thanks so much April.

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Apparently, there are a couple of LLMDs in the area. Problem is finding a good one. Any ideas how to scope out one of these docs? The last thing I need is another added to an already too-long list of bad ones.

I've only heard of one LLMD in PA .... I'd post on Lymenet for recommendations on which is best over there.

You sounds just like the rest of us, LOL, we've all been there!!

I got my Humaworm without psyllium and cascara sagrada, I am allergic to psyllium and it binds me up and I'm not a fan of cascara sagrada, but I am thinking I need to be on some sort of "laxative" while I take it. I'm wondering if I drank senna leaf tea every other day if that would be effective enough...anyone have any thoughts on this??
I think a laxative is a good idea if you need it.

Carla,

I completely forgot that. I have a call into the LLMD now, but we have to leave momentarily for the Naturopath's. Hopefully they won't call back during the 4 hours we're going to be away. The steroid I'm on is aerosol, so it's only supposed to affect my stomach and esophagus. :huh:

Steroids are a BIG no-no for Lyme .... even if it "only" affects your stomach and esophagus .... I'd bet your digestive issues are actually caused by the Lyme .... the steroids may make them feel better, but they are only making the Lyme worse. DEFINITELY ask your LLMD BEFORE you take any more!!!

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Sherry I came across the following:

Some of the Chinese herbs that have anti-spirochete action are: Smilax, Oldenlandia, Artemesia, Andrographis, Japanese Pokeweed(Poygonum cuspaditum)

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Thanks for pointing me to lymenet! I posted over there and hope to hear back from folks soon.

Btw, how in the everlovin' world do you guys afford some of these treatments? I'm just boggled at all this stuff you're doing (in a good way). I hope you don't mind my asking. I think the reason I've been getting crappy drs is because I've been relying on the insurance company to pay for things and I'm beginning to find out that the best health care practitioners don't take ins.

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Sherry, thanks for your thoughts. I have a chronic form of angioedema (the disease rather than the condition/situational) and have had since around the time I first started getting sick. I get an outbreak pretty much every month, and it coincides with the hormaonal cycle (drop in estrogen/progesterone)

Julie,

I think I am going crazy here but I could have sworn you were the one that mentioned they had "Passive Cutaneous Anaphylaxis" aka PCA. Was that someone else? I searched and searched througout the posts and could not find this reference.

Andrographis herb is anti PCA and has repeatedly shown mast-cell stabilizing.

Andrographis is perhaps the best primary herb to use in the treatment of lyme disease. It is antispirochetal, enhances immune function, protects the heart muscle, is anti-inflammatory (helping with arthritic symptoms), crosses the blood brain barrier where it is active as both antispirochetal and calming agent, enhances liver function and protects the liver, helping clear infection from the body.

Since it has show significant effects against inflammation-mediated neurodegeneration in the brain it is essential to use in lyme disease. It easily crosses the blood/brain barrier and accumulates in significant quantities in central nervous system tissues - brain, spinal cord, and cerebral spinal fluid

.

Julie, I will keep on the lookout for any reference to angioedema. There are some references to edema but not that one specifically.

Sorry!

April

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I sometimes get nauseous from ginger. I've heard it's good for a lot of things...I bought some to take on my first cruise because I had heard it was good for sea sickness. I took a little the first day even though I wasn't feeling sea sick...after I took it I started feeling nauseated, lol. Don't know about the other properties though...someone in choir once told me that ginger tea was good for the throat. Don't know how reliable that is though.

Thanks for the info, Donna on the bioset, asyra, art, etc. I am getting a much better picture of it all, and I think I had a simplified form of the bioset it sounds like. I think it is worth trying this approach, especially as all of you have benefited.

The Chinese use ginger for colds/cough. Boil a number of slices of ginger in water with rock sugar, then sip that. Also I boiled ginger and used it for nausea when I was battling h pylori and didn't know it. It was quite helpful actually. I didn't make that sweet, I can't remember if we put rock sugar in it, maybe just a tad.

Sherry, I'll email you copies of T's first ASYRA so you can look at it.

Thanks I got that, I can't open all the files though. I think I get the general idea though. The info was very helpful. I am not familiar with homeopathic approaches very much though I am respectful, just ignorant. So I don't follow all of this easily but am willing to learn.

I got my Humaworm without psyllium and cascara sagrada, I am allergic to psyllium and it binds me up and I'm not a fan of cascara sagrada, but I am thinking I need to be on some sort of "laxative" while I take it. I'm wondering if I drank senna leaf tea every other day if that would be effective enough...anyone have any thoughts on this??

The psyllium is a fiber/bulking agent and the humaworm already contains senna I believe. I think the senna tea would be okay, I think you want to make sure you are eliminating well. The psyllium would help to "scrub" the sides of the intestine to get all the bugs and residue loosened and eliminated. So I wonder if you push whatever fiber you can take? I take phameceutical grade cellulose which I get from my doctor (should also be available at compounding pharmacies.) Probably you know what fiber you could take.

Sherry I came across the following:

Thanks, I'll check those out. I am already on two of them I believe.

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Got a reply from lymenet already! Have the names of 3 docs within an hour's drive of me. Will be calling tomorrow to see about an appt.

Thanks again! :)

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"Some of the Chinese herbs that have anti-spirochete action are: Smilax, Oldenlandia, Artemesia, Andrographis, Japanese Pokeweed(Poygonum cuspaditum)"

Julie, I have looked here for andrographis and can't find it, which is strange I think. I am taking polygonum cuspadium which is also known as resveratrol and Japanese knotwood, and taking samento. So I am taking two of the core protocal herbs in the Buhner approach. I see that the artemesia is good for babesia. Can't find that much info about oldenlandia. The smilax is supposed to be really helpful to bind endotoxins with herxes. That makes me interested!

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Nyxie,

We charged everything. :(

We don't have good insurance....actually hubby and I canceled ours. We have state assisted insurance. If we had better insurance some of what we had done may have been covered, but probably not much.

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Well, I do have some good news...my body likes my semi-liquid diet! LOL!!! I have been drinking smoothies all day along with some fudge and my body seems to like it! YAY! I don't know how long I can not eat real food though...we'll have to see.

I had an iron IV today and I was really worried the Dr. was going to come in and ask about the LLMD appt. but he didn't! YAYY! I will have to tell him sooner or later, but for now everything went well!

Kassandra

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Got a reply from lymenet already! Have the names of 3 docs within an hour's drive of me. Will be calling tomorrow to see about an appt.

Thanks again! :)

Wow! Aren't you lucky! I have to fly to NY to see one!!!

Well, I do have some good news...my body likes my semi-liquid diet! LOL!!! I have been drinking smoothies all day along with some fudge and my body seems to like it! YAY! I don't know how long I can not eat real food though...we'll have to see.

I had an iron IV today and I was really worried the Dr. was going to come in and ask about the LLMD appt. but he didn't! YAYY! I will have to tell him sooner or later, but for now everything went well!

Kassandra

This is great news! This is all that would sit well with me for months .... I ate my first real meal about 2 or 3, then ate again at dinnertime. I put it off so long because I would feel bad after I ate ....

Actually, other than a lack of variety, it seems like the fudge/smoothies provide some balance .... it has protein, fat, and carbs ....

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Carla,

The LLMD's office called back when we were away. This is so frustrating. I can't go off of it, because the strictures won't heal, and will only become worse because of the stretching (and this is the only way to treat EE, before going on an elemental diet, etc). On the other hand there's the lyme... :blink: I'm also back to the point where Mom's starting to say again that we need to hold off treating the lyme until my intestines are healed. :rolleyes:

Body, I would've loved to not have diseases where the only treatment options are contraindicated. :angry:

Everyone,

Rachelville was right. :P Heavy metals are now finally showing up, after 3 weeks detoxing. I have mercury (.4) and cadmium (.08) high (she uses a hair analysis sheet to muscle test on), along with some other trace minerals. My sister's even worse, with just about every one very high (mercury, lead, cadmium, aluminum, etc). :( I'd think that my sister's levels at least would call for some chelation, but the naturopath is insistent that it's not needed. I'm becoming more than slightly annoyed with her. She's knowledgeable, but only in a very limited capacity. In several subjects (Celiac, Lyme) I know more than she does.

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I'm becoming more than slightly annoyed with her. She's knowledgeable, but only in a very limited capacity. In several subjects (Celiac, Lyme) I know more than she does.

I'd have a urine challenge done by someone who treats mercury toxicity. If the hair analysis is high it would mean that you are excreting it, but you need the challenge for a more complete picture.

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Andrea,

Mom already wants to go to our allergist, Dr. K, to discuss lyme with him (why, I don't know), but he is very knowledgeable about metal toxicity, so it would be nice to discuss that with him. Mom's said that she doesn't want to "jump from doctor to doctor" with our problems, but I'm really not comfortable with the care we'd receive from this doctor. Ok, I'm done thinking out loud, now! :lol:

Mia,

I believe Carla just stopped taking Levaquin.

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Carla-

did you ever take levaquin?

Yes, Birdy is right, I just got off Levaquin. It was a GREAT drug for me! I made great strides on it. It's obvious from that that Bartonella was a huge player in all this for me.

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More good news...my Nystatin is on its way! YAY!

Carla, yes, I agree with you! It's a pretty good balance of everything really...and my green smoothies have greens and fruits in them, so it's all good!

Kassandra

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Carla,

How much Theralac do you take in a day? It says on their site that 30 pills lasts for 10 weeks... :blink:

Kassandra

My LLMD has me taking one per day.

I think that it's meant to be taken weekly or something like that .... but my LLMD wants me on it daily because of the abx.

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We charged everything. :(

I'm afraid that's what we're going to have to do. Either that or tap into hubby's 401K. We're going to have to tap it anyway - found out the roof leaks during the ice/sleet/freezing rain storm we had this past weekend. Ugh! Mold anyone? Could explain some of my problems as well as hubby's chronic itching. And since I'm the only one who can fit up into the crawlspace, guess who's going to have to check out the damage?

Wow! Aren't you lucky! I have to fly to NY to see one!!!

It shocked the heck outta me. Thought I'd have to travel a LOT further. Of course, I don't actually expect to get in to see him until late spring/early summer.

Was thinking earlier today that it might actually be nice to shed all the docs I have now and have someone with fresh eyes (and opinions) take a look-see. I'm hoping this is a sign that I'm finally going to be getting some answers.

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Thanks Laura :)

April, darn. No, that wasn't me. BUT angioedema is anaphylactic in nature so there still could be a connection. Thanks for the info anyway, it gave me an idea on something more to investigate.

Birdy, your mom has a point. But on the other side of the coin, if you wait until your gut to heal you may never get anything accomplished, or at a much slower rate. Sometimes some of these things are keeping the gut from healing, just another perspective anyway.

Kass, glad the new food plan is so far so good. How is the bloating?

Was thinking earlier today that it might actually be nice to shed all the docs I have now and have someone with fresh eyes (and opinions) take a look-see. I'm hoping this is a sign that I'm finally going to be getting some answers.

That's a good idea Nyxie.

I pay out of pocket :( I don't have insurance but even if I did most of it probably wouldn't be covered. BUT, some of the clinics and practitioners have been really good about working with me, offering a break and/or payment plans.

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