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Rachel--24

Omg...i Might Be On To Something

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April,

Honestly, it hurts much less than it looks. My friends tell me it only hurts in a area that needs it. I found some areas on my back it just felt firm and nice, other areas where I had problems felt quite sore.

I just tried this morning on myself, looking at the picture on the site. I put olive oil on my thigh, and used the back side of a table knife, and just stroked it. It did not hurt at all, but immediately brought up red color. The person who did it on me would do maybe 10 strokes in the same place, but maybe just 5-6 at once, then she would come back to it.

My thigh immediately became hot as well.

Sherry

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Yay!!! Great day so far for appt's...AND they didn't have to poke me to have my blood drawn, we used my PICC! :)

Kassandra, it is so great to see more and more good news from you. Hang on for the herx from the babs, treatment, but after you get through some of that you'll start to see proof of getting better. You'll be off to college soon with high energy!!

I had a post with response to several of you and lost it....bummed out. No time to redo right now...gotta get back to packing and sorting.

Sherry

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Whoah! That book on Gua Shu at Amazon is really spendy!

Elizabet, glad you are posting, and your English is great. Nice to reach around the world, I'm in China, by the way.

Sherry

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Julie, yes, my doctor thinks the problem with my liver enzymes is antibiotics/antifungals, and now since being only on Zithromax, there is improvement.

I'll look forward to hearing what your doctor says about it. I am interested that slightly elevated enzymes are common with detox. Mine are only slightly elevated.

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Rachel, Julie, others, thanks for your thoughts on the weight. The inflammation and edema does make a lot of sense. I know though, it is important I get off sugar. I have to get off and stay off pretty much completely. It doesn't work too well for me to eat it occasionally--I immediately "fall off the wagon" so to speak.

But I am not going to keep the parasites, don't worry Carla!! ;)

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Andrea, I am looking forward to a thorough appointment with Dr. E, just hope I can be organized enough to tell her everything I need to, and get tested what I need to. Is a few pills enough of something she needs to test?

Hope I am not too jet lagged to focus...I'll need to borrow my DH's MP4 and record everything.

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Jin, I agree about the cockroaches. I have tested very allergic to them, but have been able to get it in my allergy shot which helps. Also when they die, they give off a horrible odor. Where they have been living often looks like a war zone too.

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Carla, thanks for the info, very helpful.

I do generally feel well. However, I have these unpredictable dips which are very hard to trace as there seem to be many factors. The last one was 3 weeks...very frustrating. This is what I really want to figure out and address, and also, I don't want to lose ground again in the lyme fight.

My relapses seem to be both the immediate type and the longer term type, but I don't always have the immediate kind. Like in 2007, I had a stable period off abx (still on transfer factor and samento) for 4 months. Then after the flare and several months of abx, I was able to cut back some but noticed some flaring on the days off. Now that seems to be more stabilized, I am using nutricidal on the days I am off abx. That is similar to treatment over time. Better on abx, didn't tolerate cutting back much until added samento and got that amount up to 20 drops a day.

Because of this I want to make sure about the bart. Does samento impact Bart? Maybe the reason it helped is that it impacts the immune systems cells that lyme depresses--that's what CD57 tests, right? If bart is not an issue then we need to look at a better way to get me off abx. So I really want my doc to consider the Cowden. I do have some concerns, when we have supplemented for adrenals, I don't do well--insomnia and jittery. $2000 is a scary amount but if it could replace other supplementation, and I wouldn't have co-pays, and feel stable, it would be worth it.

Sherry

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Andrea, I am looking forward to a thorough appointment with Dr. E, just hope I can be organized enough to tell her everything I need to, and get tested what I need to. Is a few pills enough of something she needs to test?

Hope I am not too jet lagged to focus...I'll need to borrow my DH's MP4 and record everything.

I took whole bottles up but she only uses a few from each bottle. For establishing what your body can handle as far as dosage you may want to bring more than a few though.

It would probably help to record it. I don't think I'd be very coherant with the jet lag.

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Carla,

Congrats! Wonderful news! Yay! :D

Sherry,

That Gua Sha's interesting. Reminds me of what the ancient Romans did when they bathed. Scraped the skin after oiling it. Early detoxers?

Jin,

The bleeding should only last for a couple of days, if that. If it goes on any longer, give the nice (non-barfed upon) dentist a call.

Birdie,

re: mom, coughing and biohazards :lol::lol::lol:

April,

Sounds like you've found a great doc! Yay!

Rachel,

Have you come up with a name for your alien baby yet? I must have missed it.

Everyone,

Was having a bad brain day yesterday. It really felt like my thought bubbles were popping. Started back up on thyroid meds on Monday and have been really restless ever since. Thinking since my adrenals haven't been supported, I might not be tolerating the thyroid meds, even with the higher ferritin levels. On the bright side, I've gotten a lot of housework done. Think I'll add some B5 to my routine, since that's supposed to be good for adrenal support.

And I've been hungry! Wow! Think I might be getting used to the abdominal pain. It doesn't seem to stop me anymore, even when its somewhat bad. Oddly enough, I've been eating all week and have still lost 2 more pounds. Yay and harrumph!

Sorry if I've missed anyone. Still kinda whifty today.

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Thanks, Andrea. I'll check and try to put a few more in. Some I have only have a few of, though. My goal is to get through my work papers and health papers, etc tomorrow, that's the biggest job left to finish regarding my packing.

Then, I'll work further on the stuff for Dr. E, and try to get my head organized. If I have it well written out, I should be okay, especially if I record it.

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I probably would of just fainted lol.

Me, too. I almost fainted both times I got my ears pierced.

We are going to start treating Babs with Mepron and Zith.

GREAT! You will make progress on this!

She gave me a script for Ambien because of the sleep, but it's the lowest dose and we're hoping that will help with the sleep issues.

So it's 5 mg? That's what I take at night .... I break a 10 mg in half .... then I take the other half when I wake up in the middle of the night. I haven't had to do this for the past several nights, I've slept through. :)

Carla-

great news!!!

How long were you on levaquin for?

Thanks. I was on Levaquin for three months.

I did the Humaworm around that time, too. I started the Levaquin, then felt bad for six weeks. About that time I started the Humaworm, then got a LOT better. The doc was asking about the Humaworm and wrote down the website so he could look into it. He asked me if the Humaworm or the Levaquin made me feel better, but since they were both at the same time, I really couldn't say. I hadn't really thought of it in that way until he asked.

I think they both contributed. A parasite that big had to be a drain on me!

Carla,

That is all helpful info, thanks. My relapses seem to be a combination of the immediate and longer term relapses. I don't always have the immediate relapse but sometimes I do. Last winter/spring was my longest time without relapse (4 mo), but I wasn't on anything to maintain other than transfer factor and samento, plus general support things.

So I think it is important to eliminate bart as the cause of relapse. And then, I think the Cowden looks good if my LLMD agrees. I am concerned about the adrenal support as when I have done that it has made me jittery and worsened insomnia. Maybe the protocol can be adjusted.

Yes, overall, I do quite well, but I really want to get rid of these unpredictable dips--and try to determine the cause. The last one of 3 weeks last month was extremely frustrating.

Nope, I don't want to keep the parasites, and also want to be wise about how to get rid of them. If the tapeworm has survived my pineapple diet/pumpkin seeds, plus 2 weeks on the humaworm, its a hardy animal indeed! I can't find any information about whether they always pass somewhat intact or if it can get broken up into unrecognizable bits.

Sherry

It doesn't sound like you need adrenal support if it makes you jittery.

Bart is probably a good possibility to explore.

I think you digest much of the worm. :ph34r: It was only the first couple times that it looked like a tapeworm ... after that it was clear it was not something I ate, but as time went on it looked less and less like a tapeworm.

Because of this I want to make sure about the bart. Does samento impact Bart?

I don't think so.

Maybe the reason it helped is that it impacts the immune systems cells that lyme depresses--that's what CD57 tests, right?

My LLMD doesn't use the C D 57, maybe someone else can answer ....

$2000 is a scary amount but if it could replace other supplementation, and I wouldn't have co-pays, and feel stable, it would be worth it.

Sherry

You don't pay for the whole system up front, that is what it costs over a six month time frame. When he put it that way, it actually sounded like less to me considering the big picture, including the fact that I have to travel and spend the night up there when I see him. $2000 is about what it costs for Chloe and I to get up there once, including the visit and the meds/supplements/herbs.

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I have had an awesome day today and im not going to let no answers get me down.

This is a great attitude!

Is it cheaper tho to do it yourself then to go in once an week. Im cusious on how expensive they are. My nd did say they might benefit me some, but i told her i had to get back to her, of course i have to research it lol.

Well, I figured it out last night after I posted. It's WAY cheaper for me to do it myself.

My LLMD's office charged me $39 to give me the shot. Some of that would be reimbursed by my insurance I think, but not sure yet because I haven't received anything back yet.

My HN doctor's office just charges me my "co-pay" which would be $15 per shot.

Each of the home shots will cost me $5.06, so yeah a lot cheaper in that regard, but don't know if it's reimbursed or not yet. I'm trying for reimbursement, but I can always put this on my FSA if I have to I think.

Donna,

Ouch! That seems expensive to me! Mine came pre-filled. Do you have to fill yours? Can you get them through the Pharmacy I got mine at...Lee Silsby Pharmacy. They were great about everything. I think it's a compounding pharmacy.

So, are you getting 2 kinds of b-12 in one shot then? I think I only get methyl b-12, but I'm not sure.

Yes, I have to fill my own, they are not pre-filled. Next time I may just ask for a script, although it's mighty convenient just getting it from them, lol. There is a methyl B12 vial and a BComplex vial...I put 1cc of each into the needle. Almost all my doctors want me on a BComplex for some reason, lol.

Hey and I was able to do the math.LOL:o

I can't tell if it's helping me anymore. It use to give me a little energy but now it's not. I may discontinue after seeing the llmd.

Yay on the math!!!! :lol::P I think they are really helping me. I noticed when I stopped taking the B12 sublinguals I felt a drop in energy, but I think they also want me to take it for other reasons. I've read somewhere about the B vitamins helping something, lol. Wish I could remember what it was...I keep thinking it was something to do with pathways or detoxing/chelation, but now can't remember. Must see if I can find that. I DO think it helps my adrenals like Nyxie said, so that may be why.

Here's a couple of sites about Chinese gua sha. Notice that this technique may impact the fibrin issues we've talked about. Also it is usually done by folks here at home on themselves, so it can't be that hard to learn. There's a book on it, mentioned on these sites.

Thanks for all the websites!!!! This sounds like something I could try at home...UNLIKE ECOFFEE, lol. :lol:

Sorry if I've missed anyone. Still kinda whifty today.

Sorry for your whifty day! Can I just say that your posts always make me smile!

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Well last night i did alot of thinking about my test results and thought to myself why am i so upset Maybe nothing else is wrong with me and all this has been cause i havent healed from celiac yet. Maybe it was cause i had a cold for months, maybe i felt bad cause i was smoking again, maybe i felt bad cause of all the death in my life, maybe i felt bad cause of all the stress. Maybe i did just get candida from celiac, or cause i had 4 babies in 5 years, or cause i was always on antibotics as kids and on the pill for 13 years.

paula

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Paula, that all could be the problem. Really, it could. :) Maybe take something like valerian root for stress, grapefruit seed extract and probiotics for candida, and really eat a healing diet like you would if you had just had the flu.

You've got to remember, a lot of us on this thread are not diagnosed celiacs .... your issue could be all celiac healing issues.

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Oh Paula, please don't be discouraged. I know it's easy for me to say, but really, every single thing you do, even if it doesn't show something is getting you closer to knowing what IS wrong. I've had so many negative tests, that it isn't even funny, but by eliminating all those things, got to where I am now, which is knowing exactly what I'm up against and being able to do something about it.

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Paula, that all could be the problem. Really, it could. :) Maybe take something like valerian root for stress, grapefruit seed extract and probiotics for candida, and really eat a healing diet like you would if you had just had the flu.

You've got to remember, a lot of us on this thread are not diagnosed celiacs .... your issue could be all celiac healing issues.

Thanks carla, i never heard of valerian root for stress, i will look into that. I will also look into grapefruit seed extract, i have been eating half of a grapefruit an day, cause my nd said that would be fine, so im wondering of that is helping some, or is a real grapefruit and an extract 2 completely different things.

i was just thinking that carla, about how many diagnosed celiacs we do have on this thread, am i the only one?

paula

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Oh Paula, please don't be discouraged. I know it's easy for me to say, but really, every single thing you do, even if it doesn't show something is getting you closer to knowing what IS wrong. I've had so many negative tests, that it isn't even funny, but by eliminating all those things, got to where I am now, which is knowing exactly what I'm up against and being able to do something about it.

Im not really discouraged, im actually kinda thankful right now. Even my hubby was telling me last night, i think u just started to te research so much that u convinced urself that other things were going on. He was like look when we first had our stepson tested for celiac, you researched so much u felt that was your problem, then of course u get tested and find out that this was your problem also, so you figured all the research you were doing now would also find you postiive. And i beleive in what he is saying.

I figure i will gve me 6 months on the candida diet and see how i feel, then if i still have issues I will go see the specialist that julie is seeing.

paula

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Thanks carla, i never heard of valerian root for stress, i will look into that. I will also look into grapefruit seed extract, i have been eating half of a grapefruit an day, cause my nd said that would be fine, so im wondering of that is helping some, or is a real grapefruit and an extract 2 completely different things.

i was just thinking that carla, about how many diagnosed celiacs we do have on this thread, am i the only one?

paula

GSE is most likely more concentrated. My LLMD has me taking it for my Lyme to replace the Tindamax. It cyst busts the Lyme.

Patti is also a diagnosed celiac, but other than that, I can't think of anyone!

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Paula,

I'm not sure if I have celiac. I still dont' really understand my Gene test completly. Apparently one celiac gene does not make me celiac. HLA DQ 3,1 subtype 8,5.

I've been on the candida diet for two years now with little diversion, and a fibromyalgia diet for a year before that and I'm just not getting better.

For me.... heavy metals and lyme are my problem. I feel confident these are my issues because I tried just about everything else.

Process of elimination :rolleyes:

Get better soon and it's always a good thing to be thankful :)

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Apparently one celiac gene does not make me celiac.

Even two celiac genes does not mean you have it. Thirty percent of the population has a celiac gene, yet only 1% develops the disease.

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Yes Carla. This is exciting to me to know this is reverseable.

To be able to think clearly again would be my #l wish, followed by a tie with no fatique and depression. Pain I've had all my life.... I wonder how it would feel to have no pain????? This would be my third wish.

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i was just thinking that carla, about how many diagnosed celiacs we do have on this thread, am i the only one?

My family all have one or two celiac genes, but according to enterolab only hubby wasn't reacting to gluten. All the rest of us came up with it on ELISA and/or ASYRA testing. Whether it had progressed to celiac in any of us, I don't know. We will remain gluten free due to the reactions to begin with. Also, my brother had something that looked like DH that has gotten better since he's gone gluten free. He still eats some fast food though so I think cc is still an issue with him.

Don't forget the mold. The mold could be causing you all sorts of problems too. The thing is to supplement and support your body so you can heal.

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