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Omg...i Might Be On To Something


Rachel--24

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Murph Newbie

Arrgh this thing cut off most of my last post. Musta been because I snuck in the high-ACSII character for trademark right after Sidekick. (Only know the code cuz tm are my initials)

Now I forgot everything I'd written except for saying I'm a guy.


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Murph Newbie
Murph, have you tried Bragg's Liquid Aminos? It's similar to soy sauce, but not fermented. It is gluten-free.

Aha! I'd heard of it, found it at a store, but then unsure of what I'd do w/ it, didn't buy it.

Has anyone used Bragg's in a stir-fry in place of tamari/soy sauce? Successfully?

rinne Apprentice
Mia- That is so funny. I want to make a tshirt for all of us that says "TICKS BITE!"

...

:lol:

I'd like to see one that says "Ticks Happen". :lol:

....

The amino acids and minerals are ESSENTIAL for detoxing heavy metals and other toxins. Mostly Glutathione and cysteine. These amino acids are both in the whey protein my Dr. has me taking.

I've read alot about this in the past....if a person isnt getting sufficient minerals and amino acids in their diet....it leaves room for mercury to settle in.

.....

More excellent scientificness. Thanks Rachel. :)

nikki-uk Enthusiast
Open Original Shared Link

I REALLY didn't know that SCATOLOGY is a REAL (not made up by Susan ;) ) word!!!!!

EXCELLENT!! :lol:

I can't help wondering if those that say the H in herb (Brits for sure & whoever else) also say it in heir.

Loving these WORDY discussions - and we Brits pronounce heir as 'air' (silent H) :)

AndreaB Contributor
does anyone remember when we posted the C D 57 results? I am scared to go back

Reference range 60-300

<20 highly advanced 20-60 active >60 less active > 200 normal

Charlie May 07 60

Rachel May 07 78

Donna May 07 84

Bev May 07 32

Well, Andrea, you are learning this stuff well. I spoke to my nurse at the LLMD's office and she said that what I had did NOT sound like a herx, that the Lyme was flaring due to the cold. That the immune system is so overwhelmed that it couldn't keep up with it all.

I should have proofread my post......I meant that a little mercury can tie up a lot of lead. Didn't you say lead was a problem?

This test makes Enterolab's look like a walk in the park. First, there is nothing to hold the tray, which looks like a french fry container ... or a hot dog container ... like at a fair or something. :blink: Then it has to be scooped into a vial and mixed with a fluid. :huh::ph34r: It might make me puke. Gross.

Eeeewwwww!!! :huh::o:blink: I wouldn't want to do that either. I guess, if you don't have a choice, you don't have a choice though do you? :ph34r:

Aha! I'd heard of it, found it at a store, but then unsure of what I'd do w/ it, didn't buy it.

Has anyone used Bragg's in a stir-fry in place of tamari/soy sauce? Successfully?

We used to used Braggs all the time. It works real well. We also used it in Tahini Dressing, which was really good. I sold that cookbook but I can see if I have it anywhere on the computer if you're interested.

miamia Rookie

ok I am confused about my c d 57 results Mine is 26- any opinions

AndreaB Contributor

Murph,

I must say welcome to the second regular guy on the thread. We used to have others but haven't seen them in awhile. Cruiser Bob pops in once in awhile.

What testing have you done in the past? What has made you question that something else is going on?

Where do you hail from? Do you know if there are good doctors/holistic/naturopath or LLMD's around where you are?


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DingoGirl Enthusiast
Hey! Anyone else like America's Test Kitchen on PBS? Nothing gluten-free there, but for me starting w/ so little cooking knowledge, it's been great.

OMG - - I LOVE that show....used to watch cooking shows back to back on sat. mornings - - and this is the reason I'm now allowed - self-imposed rule - to have expanded cable - - would watch Food Channel endlessly - - remember? it's PORN for Celiacs.....:(

I REALLY didn't know that SCATOLOGY is a REAL (not made up by Susan ;) ) word!!!!!

EXCELLENT!! :lol:

Loving these WORDY discussions - and we Brits pronounce heir as 'air' (silent H) :)

HI NIKKI!! Yup, it's a REAL WORD!! :P The only word I"ve made up that people use here is HEINOSITY...there are others but haven't shared them with you guys :ph34r:

Bloody hot here - - - and tika is covered wtih mud - Annie knocked her over in the orchard whilst they were drinking water - - so sad. Annie is such a little savage at times! must go wash dingos....again....

AndreaB Contributor
ok I am confused about my c d 57 results Mine is 26- any opinions

According to what the reference ranges are you have an active lyme infection. That would pretty much go along with how you are feeling.

When did you have these done please. I'm keeping track of dates and scores so we can see how the numbers progress through treatment and see if they correlate to how everyone is feeling.

Have you been tested for co-infections? Did you ever redo the Igenex? You've probably been on enough of a lot of different things to stir everything up quite a bit.

dlp252 Apprentice
This test makes Enterolab's look like a walk in the park. First, there is nothing to hold the tray, which looks like a french fry container ... or a hot dog container ... like at a fair or something. :blink: Then it has to be scooped into a vial and mixed with a fluid.

Yep, I've done a few like this...once they gave me a container the size of a small margine tub! Um, I don't think so, lol. Last time I just covered the bowl with plastic wrap ... much larger, lol. HATE, HATE, HATE scooping it into the little fluid filled tubes!!!!

Now I forgot everything I'd written except for saying I'm a guy.

Yay, another regular guy poster! Okay, so you can have slippers other than pink if you want. :P

I'd like to see one that says "Ticks Happen".

:lol:

ok I am confused about my c d 57 results Mine is 26- any opinions

I am not surprised! I would expect that yours would be very low just by how badly you've been feeling.

dlp252 Apprentice

Grump is a guy too, right?, so we have 3 regular male posters now...

tabasco32 Apprentice

Hi everyone

Well I was wondering if anyone knew if taking whey protein can constipate you like milk does. Milk constipates me so I am afraid to take the whey protein but I know I need it so I should just take it anyway. Are castor oil packs or vinegar oil packs or aloe vera gel ok to take right now. Hey rachel what is the name of that chicken because i can't do rosie either it gives me discharge and it is really oily and gross.

lisa

AndreaB Contributor
Bloody hot here - - - and tika is covered wtih mud - Annie knocked her over in the orchard whilst they were drinking water - - so sad. Annie is such a little savage at times! must go wash dingos....again....

You don't have to life these guys into the tub do you? :blink:

Grump is a guy too, right?, so we have 3 regular male posters now...

I stand corrected. Sorry Grump. :D

We have Charlie, Grump and Murph, along with Cruiser Bob popping in once in awhile. :D

CarlaB Enthusiast
Now I forgot everything I'd written except for saying I'm a guy.

That would have been my guess. :)

Aha! I'd heard of it, found it at a store, but then unsure of what I'd do w/ it, didn't buy it.

Has anyone used Bragg's in a stir-fry in place of tamari/soy sauce? Successfully?

I have. It's not as strong tasting, but other than that it's very similar. My favorite way to use it is on popcorn with coconut oil, butter and salt.

I just used it on sushi today. :ph34r: Yes, I had sushi ... I have it about twice per month ... which is good because I could eat it EVERY DAY! I do get it with brown rice though, so the only concern is the mercury.

Loving these WORDY discussions - and we Brits pronounce heir as 'air' (silent H) :)

So do we. ;)

I should have proofread my post......I meant that a little mercury can tie up a lot of lead. Didn't you say lead was a problem?

:lol: You didn't have to admit it!! The pa at the doctor's office said the symptoms were from the borrelia. I even think that the babesia is becoming less and less of an issue. Can't tell you the last time I had a night sweat ... think it was when I was in Phoenix and off the meds.

ok I am confused about my c d 57 results Mine is 26- any opinions

I would have guessed low for you because you are so symptomatic. If my LLMD used it, I would guess low for me, too.

Murph Newbie
Loving these WORDY discussions - and we Brits pronounce heir as 'air' (silent H) :)

AHA! Thx for clearing that up for me!

I think it was Ricky Gervais I saw on Leno joking that the Brit way of saying herb was right cuz "u can't ignore the H!".

Wish Jay had brought up heir. He also made fun of his own pronunciation of aluminum as aluminIum. Pretty weird to throw in an extra syllable, imo. Y'all don't mess w/ platinum that way do ya? I'll guess no.

Mtndog Collaborator
ok I am confused about my c d 57 results Mine is 26- any opinions

If I'm a 32 and you're a 26 then that must mean we both have a whole lotta Lyme. I feel pretty consistently bad these days so i would imagine if you are a 26 you do too.

Mirror mirror on the wall

who's the Lymiest of them all?

Hugs Mia! :wub: :wub: :wub: :wub: :wub: :wub: :wub:

Murph Newbie
Murph,

What testing have you done in the past? What has made you question that something else is going on?

Where do you hail from? Do you know if there are good doctors/holistic/naturopath or LLMD's around where you are?

I grew up in Mt. Prospect, IL, just a couple miles outside Chicago (Go Bears!) but spent most of my adult life in the bay area - San Jose & Fremont. Right now I'm in Phx, where the forecast is 107/108F today! Ugh.

Was diagnosed w/ celiac when I was 2 or 3, in the 60s. Oh so unfortunate for me at the time the prevailing wisdom was that I'd "grow out of it" and be fine until a possible problem "when I got old". So I guess "old" was 35, when I think it got triggered by the death of my little brother. Things had gotten so bad that I thought I was months away from needing institutional care. There's much of it that I still can't think about w/out beginning to cry so you'll have to forgive me for leaving out a great deal of the story. I'd been mostly wheat-free for awhile but the worst symptoms only got worse while new symptoms were tacked on until I went seriously 100% gluten-free.

After some months w/ digestive symptoms remaining I did a York Labs food panel of 116 foods. When it came back yeast I quickly (well maybe 6-8hrs online) became convinced it was candida. I started that diet and got a Naturopath appt the next day and have felt much better ever since.

The trouble now is mostly fatigue and a bad back, tho there can be occasional digestive issues and brain fog.

Actually, the day I came back I also started going soy-free, as a test since the last time I was unintentionally soy-free it seemed my brain worked better. Sadly, that was for my other brother's memorial last year - in a part of Alaska where even a regular store was an hour away, much less anywhere to find soymilk or soyDelicious fake ice cream. (Just the 3 or so 'fruit-sweetened' varieties w/ no vanilla)

Yikes I'm typing a lot.

Oh yeah . . . doctors. I've recently found 3 in the area that are worth a look. NDs mostly. Like most of us, I've had terrible experiences w/ MDs. :(

CarlaB Enthusiast

Murph, I take NT Factor for fatigue. It helps a lot. Donna takes it, too. You have to get it through a doc, so maybe one of your naturopaths can get it for you.

We spent several days in Phoenix about a month ago. You were having a cold snap, so the weather was beautiful!!! Low 80's I believe. Every restaurant I ate at went out of their way to take care of me ... of course, we were being entertained by vendors so they were all rather pricey.

I got my new sauna part today!! Just took one. :rolleyes: I'll be gone for a while now, lots to do tonight. Catch you all later.

AndreaB Contributor
I grew up in Mt. Prospect, IL, just a couple miles outside Chicago (Go Bears!) but spent most of my adult life in the bay area - San Jose & Fremont. Right now I'm in Phx, where the forecast is 107/108F today! Ugh.

Those temps sound unbearable to me. Rachel would probably love them though. :D

Monsoon season is coming up too isn't it? I thought that was July/August.

I was down in Tucson visiting my dad last November. He passed away in February. November is a nice time to be down there. We got spoiled by the warmth and then came home to snow/ice. We hardly ever see any but it had to choose that weekend to get cold.

I'm sorry about your brothers. :(

I only mentioned doctors in that list because some people still like theirs. I have an MD gone holistic so it's kinda the best of both worlds. He's no longer affiliated with any hospitals though, so I guess he's more holistic.

DingoGirl Enthusiast
You don't have to life these guys into the tub do you? :blink:

no silly :P in the warm weather, I just hose them off. Full bath every couple of weeks, a hose-off the rest of the time.

Pretty weird to throw in an extra syllable, imo. Y'all don't mess w/ platinum that way do ya? I'll guess no.

speaking of extra syllables, people always add an extra one in MISCHIEVOUS - - which is a three-syllabled word - MISS-chi-vus - - - and they always say miss-CHEE-vee-us. OH!!!! :o and guess what else? my favorite word - - - it is pronounced, as we know, HAY-nus (although HEE-nus is correct also) but sometimes people say - HAY-nee-us - adding that syllable! Makes me daft...

:ph34r: I am wondering, Murph, if we should start a separate thread for parsing and such.....words and usages that drive us crazy (like our President (GDub, not Rachel :P ) saying NUKE-you-lar..... :lol:

Hugs Mia! :wub: :wub: :wub: :wub: :wub: :wub: :wub:

well you are one of the SILLIEST Lymies of all! :wub:

Murph - you've lost TWO brothers, then? :( I am so sorry. these stresses on the body can be too much to bear.......

Rachel--24 Collaborator
It literally feels like the heat goes up into my head and causes pressure--that's the only way to describe it. Rather overwhelming...

Yeah...that actually happens to me too...but only if I overdo it. It doesnt really happen from the weather....only when I would go to the gym and spend like up to an hour in the sauna. I would come out for breaks but then get right back in. :rolleyes:

It was intense heat and then eventually I would feel my head pounding and there would be a ton of pressure...veins buldging out, etc.

Its the same thing that would happen when I'd get a very bad reaction to something like say MSG in processed food. If I went out to dinner I would always end up with these type reactions.

Now I'm thinking all that time in the sauna probably mobilized some mercury or other toxins and my immune system responded....cuz thats what it does....it reacts to everything....including the metals, candida toxins, etc. So my immune system was reacting to something after I let myself get overheated. <_<

tabasco32 Apprentice

mia

that stuff you use for constipation, is it good and do you use it everyday? What do you do or take for this problem

thanks

lisa

Rachel--24 Collaborator
I did it when I started the IVs...for a couple weeks, maybe?

Laura....How did it go for you??

Any noticeable difference? Bad reactions??

And, to me, the Frequency kHz part is pretty goofy. I've taken far too much physics and materials science to buy into that.

Hmmm....I'll have to look at the page again. I've only ever looked at the foods to avoid list...I dont recall anything about Frequency kHz :huh: ....I probably didnt read far enough down the page. I'll have to check it out later. ;)

Dr. S has me on a liquid glutathione...I've read that same article about it that you posted and was wondering why he has me on the oral...he DID say that if I have gut issues we can do IVs for most of this stuff. He did not put me on any of the precursors I don't think...didn't see any of mine mentioned in that article.

Yeah...I'm thinking he probably does use the IV's for glutathione so I'm gonna ask him...I think I see him in about 3 weeks.

Now I forgot everything I'd written except for saying I'm a guy.

I had already figured that. :P

Rachel--24 Collaborator
ok I am confused about my c d 57 results Mine is 26- any opinions

I would say that you have a pretty active case of Lyme Disease....you have the lowest cell count posted here so far.

Did your Dr. say anything to you about this?? He didnt explain what the results mean??

Basically its an indication of how well your immune system is dealing with Lyme. The lower the number the more difficult it is for your immune system to fight off the infection.

My CD57 was 78.....which means my immune system is keeping Lyme in check for now...its dealing with it. My LLMD is happy with this number but ultimately he would like to see my count above 100....probably closer to 150.

The CD57 goes up when the infection is under control by the immune system. If you feel better but still have a low CD57....the chances for relapse are high....it means that your immune system isnt ready to handle the infection on its own.

The only thing known to suppress the CD57 cells is Lyme Disease.

Heres some info about the test (from Scotts site)...

CD57 - We have all likely heard of people with HIV/AIDS getting their T-cell counts or CD4 cell counts checked on a regular basis. Current information suggests that there is a similar population of NK (natural killer) cells called CD57 cells that are known only to be suppressed in the presence of Lyme disease.

Generally guidelines are that a score of < 20 indicates advanced or highly active Lyme disease.

Scores of 20-60 are indicative of active Lyme disease where scores > 60 start to suggest that the Lyme infection is less active. A normal test result would be > 200.

It is my opinion that treatment is necessary until the CD57 test score is 150 or above. The lower the result, the more likely a relapse if treatment is terminated.

The test can be an indication of progression of disease or of progress in treatment. However, it should be noted that it is not uncommon to see only small changes in the results until the end of treatment where the results often then jump quickly to higher levels.

For now, it is my opinion, that this test can both be used as an indicator of Lyme disease presence and as a marker for when to consider stopping treatment.

With everything that you've gone through and are still going through...I think it might really be important for you to see an LLMD...if at all possible. You're really going to need someone very knowledgeable to get you through this and to take the proper steps to get you well again.

Has your Dr. tested you for co-infections....heavy metals...or all the other stuff associated with Lyme? You're gonna have to get a good picture of whats going on so that you can start moving in the right direction with treatment. I'm assuming you're not on any Lyme treatment right now??

Rachel--24 Collaborator
Are castor oil packs or vinegar oil packs or aloe vera gel ok to take right now. Hey rachel what is the name of that chicken because i can't do rosie either it gives me discharge and it is really oily and gross.

I do castor oil packs....I'm not familiar with the others but castor oil packs are good. :)

Lisa....the chicken is "Wise Organic Pastures". I found it frozen in the meat dept. at Whole Foods.

Mirror mirror on the wall

who's the Lymiest of them all?

LOL....Bev....you are a NUT!! :lol:

I think I might be the most "poisoned" but I'm definately not the Lymiest. :P

Murph....Wow...I'm sorry for all you've gone through. :(

This is a very supportive thread...we sometimes pour our hearts out here....break-ups, deaths, family problems...we've been comforting each other for over a year now....through all the rough stuff that we've encountered. There are some great "listeners" here. :wub:

Just wanted to say if you ever need a place to "get stuff out"....we're always here. :)

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      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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