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Omg...i Might Be On To Something


Rachel--24

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miamia Rookie
okay everone

I'ts me. I am still away because I am in pain. My whole left side in pain and my stomach. Why so much pain? And I have notice it's when I start taking charcoal again. Please don't lets me be intolerant to charcoal, but it's only when I take this I notice. It is only one capsule and I haven't changed my diet. ugh.

By the way, how is everyone else doing?

lisa

Lisa-

Alot of your symptoms sound similar to mine. (left side pain, stomach gugling, constipation, etc) I know for me adding any supplemetnts is risky. I would be really , really careful with it.

Like I just tried a new probiottic and i can feel something is not right so I am going back to my old one.

I think the hardest thing is we read about these supplements and other treatments that do wonders for other people and we want to have those results as well, but keep in mind that you ahve to listen to your body!!!

It can be very frustrating becasue we are in pain and we want results but keep in mind if your body is telling you something is not right you have to just stop it and find something different that can work for you.


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miamia Rookie
Lisa, I'm sorry you're feeling so bad. You are really on the right track. I would be surprised if mercury was your only problem, but you are off to a good start taking care of it.

Mia, you, too. Are you seeing someone for the Lyme yet?

This is what Dr. B says ... not enough sleep and still drinking alcohol are why Lyme patients don't get better.

Don't get me wrong ... I don't treat them slave-like, it's just that I figure they live here, it's not a country club, everyone can contribute. I also expect a lot of myself.

My son's summer job hasn't started yet due to his poor planning abilities, so I told him that he works here two hours a day. Today he scrubbed walls with bleach (the ones he got dirty on the basement stairs) and cleaned the glass on the doors. He's also mulching the flower beds. I think that since they're able, it's good for them to work.

And sometimes that work is turning a light on for me ... but they would never deny that I do more around here than them when my health permits.

Um, yeah, I think the two are connected. And SaXes are always loud.

Tell us about the fool you were.

I agree. With all statements.

It's the color of the emoticons. It's as thick as kefir. It tastes very bad ... leaves and almost stinging after-taste. But I love it because it KILLS BABS!

There is a babs buddies thread on Lymenet that's kind of fun. We've talked about Mepron yellow nail polish, etc. We get silly, but the talk about herxes is a little scary. It's some serious medicine, but it works.

Be sure you eat it with fat because it's fat soluble.

You'll love it because when the babs dies off, you lose some of the more annoying symptoms -- for me it was night sweats, air hunger (very, very annoying and took a conscious effort to stop hyperventilating from it), and heart palpitations.

Carla-

the new meds sound kind of gross, and rough but I love what a positive attitude you have towards it!! You are very strong !!

I have an appt. at the begining of July for a doctor who deals with metal toxicity and lyme. I am getting really impatient!!!

jerseyangel Proficient
Ohhhhhhhh I'd been figuring it it was more all or nothin.

Hmmmmm soy lecithin can be that different? Patti????

Tom--

It's an individual thing--aren't they all :P --but soy lecithin does not have any of the protein in it, so it dosen't tend to bother many soy-intolerant people.

I'm very sensitive to soy, but am ok with the lecithin as an ingredient. :)

CarlaB Enthusiast
:lol::lol::lol::lol:

Sorry :lol: Carla :lol: but :lol: that's :lol: about :lol: as :lol: likely :lol: as :lol: me :lol: having :lol: soy :lol: tomorrow. :lol:

LOL

Well, will you tell us now that you have soy lecithin to try today?

Carla-

the new meds sound kind of gross, and rough but I love what a positive attitude you have towards it!! You are very strong !!

I have an appt. at the begining of July for a doctor who deals with metal toxicity and lyme. I am getting really impatient!!!

Thanks. I am realizing that strong is different than I thought it was. I can seem so weak, but mentally I'm finding I'm really strong ... like everyone here ... that's why we're all gonna get better!

This isn't a new med for me .... I've been taking it since Jan. .... Laura was asking about it.

I'm excited for your appt., too! That's great. I can't keep everyone's appts. straight!

Mtndog Collaborator

Rachel- That's awesome! You didn't need a treatment! Wow!

Lisa- Please hang in there. You know everyone here will do whatever they can to support you and help you out!

Laura- I noticed that you and I had a lot of similarities in our bands. Could we Lymie twins seperated at bite? :P

Tom- Sax on! That's so exciting.

Morning report- feeling "less than ideal" :P but semi-human.

I really really really REALLY wish we could all have a big pj party! We could invite Tom and Richard to be the silly guys who look in the window :ph34r:

CarlaB Enthusiast
Morning report- feeling "less than ideal" :P but semi-human.

It's sad when this describes a "good day" isn't it?

I'm game for the pajama party ... I can even host it. Adam can go stay at his brother's house.

Well, I'll be gone for a while ... our kitchen guy we were working with flaked, so back to the drawing board ... meeting with a new guy today. This stinks, I was hoping to be half done by now.

dlp252 Apprentice
i think the 'youngins' on this thread (well, minus Morgan!) are Mia, myself, and Jin. I can't remember about Julie though...

but what does it truly matter....i think everyone is so young at heart here

:lol: , yeah and I'm just about the senior citizen I think! :lol::P

Hehehe that was mostly to get a smile from dingy.

There's not currently much room for teasing here w/ too many serious issues goin' on.

(Feel free on sillythread tho!)

There is ALWAYS room for teasing here! ALWAYS!!!! Dingy huh. ;) And, why is miss psue-see so quiet...where has that girl gone...

Is that like a sound purifier? Or does it cut down on excessive noise? I am not sure what you are talking about. I was thinking about one of those sound therapy things. You know, the ones that help you relax?

Actually it's just a little machine that makes noise...like a fan, but puts out no air flow. I thought about those relaxation things, but any changing noise bothers me....this is like a steady air flow sound without the actual air flow. It covers all the outside noises like people talking and stuff like that.

Ok, so how high is a high protein diet. Normal for adults seems to be 50-70 or so.

I'd love it!

The program on this site scrunches everything together, rather annoying isn't it?

As much protein as I eat, I only get about 30% of my calories from protein...50-60% comes from fat and the rest from carbs. Even when I did Atkins, that was my ratio. I can get my protein up to 35% if I eat lower fat beef, etc.

I blame Donna.

HEY!!! :lol: My posts are like two sentences long...can't blame me!!! :P

I would definately see about spacing the remaining removals farther apart and also doing more things to help yourself detox.

Yep, I would tend to agree. I thought mine was fast...we did the first two sections two weeks apart, then I took a little over a month (or was it two) break, then we did the last two sections two weeks apart. I wouldn't have minded going slower than that.

Andrea...you are such a sweetie.

DEFINITELY!!!!


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dlp252 Apprentice

and part 2 :lol:

But seriously, I haven't even opened the case in 2-3 yrs, and maybe 3x in the 2yrs b4 that. THAT's why it's so exciting to be SO itchin' to play!

Still this is very exciting!

So they are using this new homeopathic for detoxing yeast and aspergillus mold...(which always shows up for me in BioSET). She wants me to try this to see if we can get some of these yeasts and molds to start detoxing.

...

We talked all about what went on with Dr. Amy and what new treatments I've started. I mentioned the LED....Anna is a little concerned about this for me because of how sensitive I am. She thinks LED might be too rough for me.....but theres still alot to learn before I even venture into something like that.

As usual, your appointment sounds really great. I'm interested in the homeopathic stuff...I'm taking a detox thing for bacteria (Detoxosode), which Scott STILL says is really helping me, so I continue to take it...but would like to get rid of molds too. I think they have one for molds...maybe I should ask Anna about it.

I can see why Anna is a bit concerned though...from what I read, the LED is just like any other detox thing...too much might be rough indeed. BUT, the difference that I understood from that article is that they can control it better. There are ways that I think they can control it or test it...I'm sure Amy will take that into consideration.

I'll also be in CA in August - San Jose and Pacific Grove. Any of you crazy guys and gals live near there? I love Big Sur - the Redwoods, beach, Monterey cypress, and sea otters!

Hey Claire! I live near San Jose! We should try to get a California girl get together for while you're here...doesn't have to be a long one. :P

Donna...I'm noticing more and more posts on LymeNET about LED. Probably more awareness after Dr. Cowden just had a seminar a few weeks back. I know Scott and Dr. Amy were there....unfortunately Anna didnt go to this one.

Yes, I noticed that too, and there doesn't seem to be a lot of negativity either...usually people pop up on the "alternative" types of threads who try to nay-say it, but I haven't notice a lot of that with LED. I'm so very interested in it and hope that Anna some day decides to branch out.

By the way, how is everyone else doing?

Ah, so sorry you are in so much pain and wish there was something I could advise to help...I just don't know.

I think I've discovered what was causing my D, or at least making it worse, so I'm actually feeling better these days.

I think the hardest thing is we read about these supplements and other treatments that do wonders for other people and we want to have those results as well, but keep in mind that you ahve to listen to your body!!!

It can be very frustrating becasue we are in pain and we want results but keep in mind if your body is telling you something is not right you have to just stop it and find something different that can work for you.

Very wise advice...it's so true!

I have an appt. at the begining of July for a doctor who deals with metal toxicity and lyme. I am getting really impatient!!!

Yay, me too (getting impatient for you)!!! :)

jerseyangel Proficient
:lol: , yeah and I'm just about the senior citizen I think! :lol::P

You and me both, Donna :lol::o:unsure:

rinne Apprentice
OMG! :blink:

I leave you ladies (and Tom - really no relation - I'm not the least bit Saxy) to your own devices...and now I may need to quit my job and come back here full-time to keep an eye on you all!

......

Hey Triticus, Tua toga suspina est. :P:lol:

Good to see you. :)

Donna...I'm noticing more and more posts on LymeNET about LED. Probably more awareness after Dr. Cowden just had a seminar a few weeks back. I know Scott and Dr. Amy were there....unfortunately Anna didnt go to this one.

...

I'm hoping you can. :)

....

By the way, how is everyone else doing?

lisa

Sorry to hear you are in so much pain. :(

I'm about 20% pain today but given that last year I was ususally about 70% pain it is a good day. :)

Tom--

It's an individual thing--aren't they all :P --but soy lecithin does not have any of the protein in it, so it dosen't tend to bother many soy-intolerant people.

I'm very sensitive to soy, but am ok with the lecithin as an ingredient. :)

That's good to know.

....

I really really really REALLY wish we could all have a big pj party! We could invite Tom and Richard to be the silly guys who look in the window :ph34r:

Me too. :)

You and me both, Donna :lol::o:unsure:

Don't forget me, I am over fifty. :ph34r::lol:

How did that happen? :lol::lol::lol:

CarlaB Enthusiast

I got a message on my cell phone from my doctor's office. They said that Chloe's IGeneX test showed positive for some exposure to Lyme. She had one positive Lyme specific band. That's all I know ... I left another message for them to call me back with more details.

Think this will mean she needs to be treated?

We have our phone consult on Tuesday, so I'll have details then.

Kitchen guy is here, gotta run.

dlp252 Apprentice
I got a message on my cell phone from my doctor's office. They said that Chloe's IGeneX test showed positive for some exposure to Lyme. She had one positive Lyme specific band. That's all I know ... I left another message for them to call me back with more details.

Think this will mean she needs to be treated?

We have our phone consult on Tuesday, so I'll have details then.

Kitchen guy is here, gotta run.

:o Wow, I don't know. If it's only the one band, they may try other things first...like supplements or something. OMGosh...Tuesday is tooooo far away. :angry::P

tom Contributor
Tom--

It's an individual thing--aren't they all :P --but soy lecithin does not have any of the protein in it, so it dosen't tend to bother many soy-intolerant people.

I'm very sensitive to soy, but am ok with the lecithin as an ingredient. :)

Ahhhh spank-u-berry-much, it's always good to hear personal experience!! :)

And no Carla - neither will I relate my foolishness nor try soy lecithin anytime soon. :P

tom Contributor
I really really really REALLY wish we could all have a big pj party! We could invite Tom and Richard to be the silly guys who look in the window :ph34r:

LOL :lol: but which of u would surreptitiously unlock said window???

(am I the only one who'd guess Pseu-zee?)

:P:lol:

CarlaB Enthusiast

Okay, here are the details ...

IgM -

34 IND

66 +

IgG

41 +

58 +

Nurse said that we'll do a 30 day round of antibiotics and see what happens. Our phone consult will be next week to cover the specifics.

AndreaB Contributor
Laura- I noticed that you and I had a lot of similarities in our bands. Could we Lymie twins seperated at bite? :P

:P

PJ party would be good. I'd love to meet everyone in person. :D

There is ALWAYS room for teasing here! ALWAYS!!!! Dingy huh. ;) And, why is miss psue-see so quiet...where has that girl gone...

Yes, where has she gone! :unsure:

As much protein as I eat, I only get about 30% of my calories from protein...50-60% comes from fat and the rest from carbs. Even when I did Atkins, that was my ratio. I can get my protein up to 35% if I eat lower fat beef, etc.

I don't have a clue what my ration is. :huh: I just try to get between 50-60 grams of protein a day. Most people go over so I probably do to.

I got a message on my cell phone from my doctor's office. They said that Chloe's IGeneX test showed positive for some exposure to Lyme. She had one positive Lyme specific band. That's all I know ... I left another message for them to call me back with more details.

Think this will mean she needs to be treated?

They may want to do some less agressive treatments. I'll be waiting as impatiently as everyone else to see what your doctor says.

How long do you need to wait for the metals test results.....couple weeks?

tom Contributor
And, why is miss psue-see so quiet...where has that girl gone...

Yeah, I too expected her to violate the self-imposed offline edict.

Wow - out there doing stuff - imagine that!.

(Imagining and knowing the day will come)

:)

rinne Apprentice
I got a message on my cell phone from my doctor's office. They said that Chloe's IGeneX test showed positive for some exposure to Lyme. She had one positive Lyme specific band. That's all I know ... I left another message for them to call me back with more details.

Think this will mean she needs to be treated?

......

Wow, that is huge. How are you?

I hope she can be treated with detox and supplements. :)

LOL :lol: but which of u would surreptitiously unlock said window???

(am I the only one who'd guess Pseu-zee?)

:P:lol:

You don't know us very well. :lol::lol: I suspect we would all unlock the window, in fact I am pretty sure it would be Beverly first, yoohoo Bev. :P:lol:

jerseyangel Proficient

Hi Andrea--I see you! :D

Donna--I put my spice name under my avatar, too! :)

Ok--I think I know why I've been sick the past month or so with gluten-like symptoms.....I started using Philosophy skin care in April--love it :rolleyes:

Anyway, I thought I was doing fine by just reading the labels and never suspected that any of the products were causing anything. They never entered my mind :unsure:

So the other day, I emailed them asking for a list of their products that contained gluten. I was just thinking that I'd like to try some of their bath products and thought that with a list, it would be easier to order.

Imagine my surprise (and horror) to see the very sunscreen product that I HAVE BEEN SLATHERING ON MY FACE FOR WEEKS as the first one listed in the "contains wheat" column..... :o<_<

So.....as always with me, all roads seem to lead right back to gluten :angry:

The company, by the way, sent me a nice list of all of their products that contain allergens, and listed which products had which potential allergic ingredient. Luckily, out of all the stuff that I use ( and I have lots of those cute little containers now :P ), that product is the only one that is a problem for me.

They didn't label in plain english, so it got by me :ph34r:

Interestingly enough, although I have had D almost daily, the worst has been the palpitations and the anxiety. The lightheadedness and the reflux is also back, so I'm hoping that this has been the culprit all along here.

dlp252 Apprentice

Pajama Party would definitely be TOOO FUN!!! I have fuzzy slippers to share. :P

Okay, here are the details ...

IgM -

34 IND

66 +

IgG

41 +

58 +

Nurse said that we'll do a 30 day round of antibiotics and see what happens. Our phone consult will be next week to cover the specifics.

Wow! Glad you got the results before Tuesday...that would have just been too long for ME to wait. :P

The 30 days might change things a bit too.

Hey everyone...help me, lol. I'm making a spreadsheet of everyone's Igenix results with IgG and IgM separated...I have Bev, and both of Laura's and of course mine and now Chloe's...

Can you all give me a month that you might have posted your results here so I can narrow my search down. :lol: I've just spent 25 minutes trying to search "results"...that was not productive. :lol:

I don't have a clue what my ration is. :huh: I just try to get between 50-60 grams of protein a day. Most people go over so I probably do to.

:ph34r: I eat approx. 100 grams a day, and that's still only 30% of my calories. :ph34r:

CarlaB Enthusiast
Wow, that is huge. How are you?

Thanks. :wub:

I've been dealing with schools, first in Indiana, then started over when we moved here, to get her an IEP (individualized education program). That has been grueling, especially on her, trying to figure out how she best learns and adjusting the methods the school uses to her. It's been hard to watch her struggle with this ...

So, this, in my mind, gives a possible reason for all these learning difficulties. I also think that if I had known when I was her age and not as progressed that it would have been so much better for me.

I'm okay with it. Everyone has their life difficulties, and Chloe has the advantage of knowing what hers is. :) Her past couple years has been tough with schooling and I have hope that this will make things better for her. She's not sick like some of us, so it should be easier on her if she does require ongoing treatment.

CarlaB Enthusiast

Donna, I posted mine December 6.

AndreaB Contributor
Okay, here are the details ...

I've got her added to my WB table.

jmengert Enthusiast

Hi, Patti--I'm sorry to hear that you've been feeling ill lately. Hopefully, the cream was the culprit, and now that you've stopped using it, you will begin to feel better. I hate when gluten is hiding under weird names; it's very frustrating.

Hi, Carla--Hopefully, Chloe will be on the path to recovery soon and won't have to deal with the problems that many of us here have. I'm sending you both lots of positive thoughts and wishes.

I hope everyone else is doing as well as possible today. I'm still doing a bit better the last two days, though my diarrhea is back, but not as bad as it was before. I haven't taken any imodium since Monday, which is a pretty big step for me. I'm just taking things one step at a time now.

AndreaB Contributor

Donna,

Here's the list before I stopped doing both of them. As usual go to reply so you can see it better. This doesn't copy over as nice.

Rachel Rhonda Mia

IgM Western Blot IgG: IgM Western Blot/IgG

18 kDa. neg 18 kDa neg. 18 kDa. neg /18 kDa +

22 kDa. neg 22 kDa neg. 22 kDa. neg /22 kDa neg.

**23-25 neg **23-25 kDa neg. **23-25 neg /**23-25 kDa IND

28 kDa. neg 28 kDa neg. 28 kDa. neg /28 kDa neg.

30 kDa. +(IgM)/30 kDa neg 30 kDa neg. 30 kDa. ++ /30 kDa neg.

** 31 kDa neg **31 kDa IND. ** 31 kDa IND /**31 kDa IND.

**34 kDa. IND **34 kDa IND. **34 kDa. Neg /**34 kDa IND./37kDa/Neg

**39 kDa. IND **39 kDa IND. **39 kDa. IND /**39 kDa IND.

**41 kDa. ++ **41 kDa pos. **41 kDa. ++ /**41 kDa +++

45 kDa. neg 45 kDa neg. 45 kDa. neg /45 kDa +

58 kDa. neg. 58 kDa pos. 58 kDa. +. /58 kDa ++

66 kDa. + (IgM)/66 kDa neg 66 kDa neg. 66 kDa. neg/66 kDa neg.

73 kDa. neg 73 kDa neg. 73 kDa. neg /73 kDa neg.

**83-93 kDa. neg **83-93 kDa neg. **83-93 kDa. neg /**83-93 kDa ind.

Carla Laura

IGG /IGM IGG/IGM

18 kDa + / - 18 - / -

22 kDa - / - 22 - / -

23-25 kDa + / - **23/25 - / -

28 kDa + / - 28 - / -

30 kDa + / - 30 ++ / +

31 kDa +++ / - **31 - / -

34 kDa IND / - **34 - / -

39 kDa IND / IND **39 IND / IND

41 kDa +++ / IND **41 + / +

45 kDa - / - 45 - / -

58 kDa + / - 58 - / +

66 kDa - / - 66 - / -

73 kDa - / - 73 - / -

83-93 kDa ++ / - **83/93 - / -

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      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
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