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Omg...i Might Be On To Something

Rachel--24

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mftnchn Explorer
mftnchn
Posted

Just caught up reading. Life is kinda overwhelming these days but I haven't forgotten all of you. Countdown to departure is 11 days. Whew.

Julie so sorry to hear about your breakout.

I've continued my ups and downs but I think we are getting a handle on some of the stuff. My supplements have really increased and are so expensive. I figure I can try this for 4-5 months and if I am not a LOT better...I can't continue as we just don't have the resources.

Carla, not sure I can do whey regularly. I am doing small amounts of milk every few days, but have added in goat dairy.

I am going to be giving myself shots of Meyer's B vitamins; I tested well on ART for this but none of the oral B complexes (tried many) except one, and the Meyers tested much better.

Tomorrow the doctor is going to give me a bit of cysteine as an injection to see if I can handle it okay. We haven't found an oral one I can handle. That's the last trial before I leave.

Sherry

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miamia Rookie
miamia
Posted
I believe that in time the studies that are being done will reveal enough answers and that these conditions will be more understood and better treatments will be made available. :)

What type of problems would this cause for someone who may already have deficient sulfation due to mercury, genetics or some other cause??? :huh: Would the pathway become completey blocked? If I'm not mistaken this is the vaccination that babies are given at birth.

Even if sulfur levels arent low but the body is unable to convert to sulfate....enzymes such as PST are impaired.

Rachel

have you ever tried msm?

CarlaB Enthusiast
CarlaB
Posted
Hi, I'm here. I heard you.

So do you always read along or do you have some kind of telepathy to tell you when your name is mentioned? :lol:

It's good to see you! I'm glad Rinne bars are coming along! I'm sure Kassandra will join Rachel in the first to make them!

Carla, lovely photo

Thank you.

Carla, not sure I can do whey regularly. I am doing small amounts of milk every few days, but have added in goat dairy.

I think they make goat whey .... not sure, I haven't seen it, but haven't we talked about it?

I'm thankful I have no problems with the whey, it's really a staple for me when I have no appetite!

mftnchn Explorer
mftnchn
Posted

Hmm, I'll check that out.

Green12 Enthusiast
Green12
Posted
I too, would like to see more of you Rinne. :wub:

And I'm not the only one. :D

You definitely aren't the only one Andrea, I miss Rinne too!

I think they make goat whey .... not sure, I haven't seen it, but haven't we talked about it?

I know we've talked about Mt. Capra Mineral Whey, I think Rachel and I both mentioned it a while back.

It's a very high quality, mineral rich, goat's milk whey powder.

Sherry, I think I found it at my local health food store when I was taking it.

Thanks everyone for your comments :wub:

I have a phone consult with the LLMD tomorrow and then he will give instructions to my ART practitioner on how to proceed with my treatments and protocol.

Rachel, I would love to read the info you posted that I missed. I read through the most recent scientificness (of this morning or yesterday?) and it's very interesting. What do we do then to fix those detox pathways??

confusedks Enthusiast
confusedks
Posted
I'm glad Rinne bars are coming along! I'm sure Kassandra will join Rachel in the first to make them!

:D You know me well Carla! :lol:

rinne Apprentice
rinne
Posted
So do you always read along or do you have some kind of telepathy to tell you when your name is mentioned? :lol:

:lol::P

Perhaps it is that "long body" I mentioned once, that we are already connected and when we know eachother .... like picking up the phone to call a friend and there is no dial tone because they are on the phone. :)

At least sometimes it works out that way. :lol:

You definitely aren't the only one Andrea, I miss Rinne too!

:wub: So nice to find you here.

Andrea, you are like the light in the window, I think part of trusting it is okay to go away is knowing that Rachelville is cared for by you. :wub:

And Rachel, it is so fabulous to hear the clarity and energy in you, I just know you are going to enjoy everything you want to enjoy again, I suspect you will even rachel some of it and I hope the rinne bars are included in that.

I have rachelled many of them. :ph34r:

I'm excited to get them into shops this summer and I have come up with some other treats too, plus I started experimenting with baking using amaranth flour. I still seem to do best on a simple diet of meats, fish, vegies and fruit but have been allowing myself a little baking occasionally.

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jerseyangel Proficient
jerseyangel
Posted

Rinne :D I was just thinking about you the other day and wondering how you were doing!

I also am so glad to see you and hear that you're well and things are progressing nicely with the Rinne Bars. Can't wait to be able to try them :)

AndreaB Contributor
AndreaB
Posted

Rinne,

I'm not posting as much but I'm always reading and keeping up with everyone, as well as keeping everyone in my thoughts. :)

jerseyangel Proficient
jerseyangel
Posted
Rinne,

I'm not posting as much but I'm always reading and keeping up with everyone, as well as keeping everyone in my thoughts. :)

Me too :)

confused Community Regular
confused
Posted

I want to know more about these rinne bars.

paula

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel

have you ever tried msm?

No...only because I dont do well with any sulfur products I've tried. I've read that it can be helpful if you dont have problems metabolising sulfur.

Rachel, I would love to read the info you posted that I missed. I read through the most recent scientificness (of this morning or yesterday?) and it's very interesting. What do we do then to fix those detox pathways??

You would need to find out which pathway and go from there. Support the weak areas. Its probably most commonly the sulfation pathway. I think with the autistic kids its over 85% that have problems with that pathway due to a shortage of useable sulfates.

The only ways they know to help it is to restrict phenols in the diet (esp. salicylates). Salicylates will inhibit the PST enzymes up to 50%...which isnt good if these arent functioing 100% to begin with. Everything begins to build up when there is PST deficiency.

Besides the phenols and other toxins...neurotransmitters and hormones also need to leave the body and PST enzymes are required for this. If these enzymes are deficient the toxins accumulate and substances which would normally be harmless start to reach toxic levels.

Restricting phenols from the diet and from other sources takes a huge load off of the PST enzymes....making it easier for the body to detox.

Other than that Epsom salt baths and magnesium sulfate creams can provide the PST enzymes with sulfates that are lacking.

Chlorine also inhibits PST...so its best to use a fliter or bathball.

I'm using No Fenol enzymes to help break down phenols.

If you dont have problems with foods high in salicylates, aspirin, food dyes and othr food chemicals then you probably dont have problems with PST.

All of this stuff supports the pathway but I would think getting the mercury out would be the biggest help of all. If detoxification is improved it should help with getting the metals out.

I'll repost the scientificness about this later on today. :)

Perhaps it is that "long body" I mentioned once, that we are already connected and when we know eachother .... like picking up the phone to call a friend and there is no dial tone because they are on the phone. :)

At least sometimes it works out that way. :lol:

Rinne is psychic. :P

Andrea, you are like the light in the window, I think part of trusting it is okay to go away is knowing that Rachelville is cared for by you. :wub:

Yup...Andrea is still the mother hen around here. :)

And Rachel, it is so fabulous to hear the clarity and energy in you, I just know you are going to enjoy everything you want to enjoy again, I suspect you will even rachel some of it and I hope the rinne bars are included in that.

I cant imagine NOT racheling the rinne bars once I have the opportunity! :D

I'm excited to get them into shops this summer and I have come up with some other treats too, plus I started experimenting with baking using amaranth flour. I still seem to do best on a simple diet of meats, fish, vegies and fruit but have been allowing myself a little baking occasionally.

I cant wait to see where all of this leads! Rinne bars...rinne treats....rinne this.,..rinne that....LOL...I'll have a dozen of everything you got! :lol:

dlp252 Apprentice
dlp252
Posted
Rinne,

I'm not posting as much but I'm always reading and keeping up with everyone, as well as keeping everyone in my thoughts. :)

Me three! :P

tabasco32 Apprentice
tabasco32
Posted

Hey everyone

Glad to see you rinne. :)

So I stopped eating dairy or should I say ice cream for 2 days but then I started again. So does anyone know what to take for energy when you can't have the sugar to keep up? I get all shakey and stuff. I wan't to throw fits and scream.

I also went to a conference yesterday and they talked about zeolite. I know carla has used it but has anyone else had any experience with it? I am somewhat curious. I know that it is on the Cowden protocol.

take care

lisa

AndreaB Contributor
AndreaB
Posted
So I stopped eating dairy or should I say ice cream for 2 days but then I started again. So does anyone know what to take for energy when you can't have the sugar to keep up? I get all shakey and stuff. I wan't to throw fits and scream.

Could part of that be an addition to the dairy. If I remember correctly dairy has addictive qualities.

Nyxie63 Apprentice
Nyxie63
Posted

*sigh*

I need to get a new GI doc. <_<

rinne Apprentice
rinne
Posted
:D You know me well Carla! :lol:

Good, I am always glad to hear of potential customers. :):lol:

Rinne :D I was just thinking about you the other day and wondering how you were doing!

Hey, I was thinking about you too. :wub:

Rinne,

I'm not posting as much but I'm always reading and keeping up with everyone, as well as keeping everyone in my thoughts. :)

I'm glad to hear that Andrea. :wub:

It does feel a little bit like "the gang's all here" but then there are a few from our wild summer missing. It is wonderful though that there are new faces here and I'll try to stick around long enough to get to know them, you. :)

Rachel, where do we get PST from?

I knew I shouldn't be so obvious about displaying my psychic abilities, what will I do for a second act? :P:lol::lol::lol:

Yes, I see it now, rinne bars achieve global domination in the marketplace, everyone must eat them. :lol:

Hey everyone

Glad to see you rinne. :)

So I stopped eating dairy or should I say ice cream for 2 days but then I started again. So does anyone know what to take for energy when you can't have the sugar to keep up? I get all shakey and stuff. I wan't to throw fits and scream.

I also went to a conference yesterday and they talked about zeolite. I know carla has used it but has anyone else had any experience with it? I am somewhat curious. I know that it is on the Cowden protocol.

take care

lisa

Hi Lisa, nice to see you too. :)

I tend to go for protein if I get shaky, I find it helps to ground me.

Hi Paula, :)

Rinne bars are a treat I invented that I have been working at bringing to market, they are unique, they are not a substitute for anything but have all the richness and satisfaction of icecream without containing any dairy or gluten, low in calories (150), made with mostly organic ingredients....

It has been a real learning curve trying to figure out the best way to do it. This summer I have an opportunity to market them directly at a resort area that sees over a million people through its' gates and that seems like a good thing to do.

The conventional business world is way behind on gluten and dairy free food and I am in a very conventional place in Canada but more than that I just can't get behind all the usual ways people do business. It seems to me that between government regulation and the economies of scale, small business doesn't have the greatest chance for success but big in the usual sense doesn't appeal to me either. I think I have come up with a solution but I am not quite ready to announce it. You'll be among the first to know and meanwhile if you feel like stopping by for tea there are rinne bars in the freezer.

And Rachel, I feel like an evil genius in the kitchen, :lol: I've even come up with something which resembles an icecream sandwich and it is made with vegetables.

Green12 Enthusiast
Green12
Posted
People who do not have impaired detoxification dont have chronic lyme and other chronic infections. I think detoxification would be one of the main reasons some people are living with Lyme in their bodies without ever getting sick...and some of us are debilitated by it.

Just wanted to quote a blurb of what you posted yesterday Rachel, this is what so resonated with me.

The whole post did, but this summed it up so well.

I'll repost the scientificness about this later on today. :)

Thanks for the info, and I look forward to reading whatever else you post about it :)

So I stopped eating dairy or should I say ice cream for 2 days but then I started again. So does anyone know what to take for energy when you can't have the sugar to keep up? I get all shakey and stuff. I wan't to throw fits and scream.

Lisa, hang in there.

I would experience something similar when trying to eliminate something like dairy or sugar, literally having withdrawal symptoms like you describe. The good news is it does get better the more days you can stay away from it and everything kind of normalizes.

What worked for me besides staying away from it, was eating protein with whatever I ate throughout the day.

Could part of that be an addition to the dairy. If I remember correctly dairy has addictive qualities.

I think you are right Andrea, at least it sure feels like it when trying to get off of it.

I knew I shouldn't be so obvious about displaying my psychic abilities, what will I do for a second act? :P:lol::lol::lol:

....

It does feel a little bit like "the gang's all here" but then there are a few from our wild summer missing. It is wonderful though that there are new faces here and I'll try to stick around long enough to get to know them, you. :)

Rinne, Rachel is right you must be psychic!!

I just mentioned you last week too, about you coining the title "lyme clan". You must have been getting the vibes we were thinking of you :lol:

For your second act, you should appear before we think of you :P:lol:

Good luck with your Rinne bars, I hope you figure all the distribution stuff so you can get them out there for all to enjoy!!

Nyxie63 Apprentice
Nyxie63
Posted

Everyone,

I really need feedback on my GI appt this afternoon. I'm feeling very unsatisfied. Wondering if I'm right to feel this way or if I'm blowing things out of proportion.

Got the ejection fraction from the Hida scan. It was 68%. Ok, no problems there.

I talked to him about the allergy testing. He was "amazed" that I tested so high for wheat but my celiac biopsy came back negative. Ummm.....

I brought up the topic of Leaky Gut as a possible cause for all my food allergies, which he didn't want to pursue.... or even talk about further.

We did talk some about Lyme. He called it "Lymes" the entire time. Ok, no help there. He also said that Bart and Babs were rare.

To his credit, he did say that he thinks the abdominal pain might be from Lyme neuropathy. At least he knew that much.

I finally remembered to ask him about my low lipase level. His reply - low is good. I asked - but that low? My lipase was 21 (22-51) the last time it was tested. His reply - the lower the better.

He also said my problems weren't digestion-related.

He said there really isn't much more he can do for me re: abdominal pain. There are additional tests they could do, but he'd have to refer me to a dr in Philly for those.

He wants to see me again in 6 months.

Do you think I'm justified in wanting to find a new GI?

AndreaB Contributor
AndreaB
Posted

I don't know what to suggest Nyxie. :( Sorry.

Green12 Enthusiast
Green12
Posted
I don't know what to suggest Nyxie. :( Sorry.

Ditto Nyxie, I don't have any experience with GI docs and the testing and procedures they do so I can't shed any light or give you any suggestions.

I'm just sorry it wasn't a very satisfying appt and that you are bummed :(

Nyxie63 Apprentice
Nyxie63
Posted

Andrea and Julie,

Thanks for the sorrys anyway. I really don't know what to do.

Think it would do any good if I posted this on the "coping with" board here or over at LN? I'd really like to know if my perceptions are off or what.

Thanks again. :)

Green12 Enthusiast
Green12
Posted
Think it would do any good if I posted this on the "coping with" board here or over at LN? I'd really like to know if my perceptions are off or what.

I actually think that would be a good idea Nyxie.

You could post either in the Coping, Post Diagnosis, or Doctors categories, you might get some good feed back from others who have experienced what you did with your Dr.

You guys, I am totally crazy :lol:

I just read through the first 100 pages of this thread :o I was getting a little nostalgic I guess with Rachel mentioning it was near the 2 year anniversary of the thread, and then Rinne's recent posts.

It seems like a life time ago, yet I remember all of that like it was yesterday.

Has anyone kept in touch with Evie?

mftnchn Explorer
mftnchn
Posted

I don't know either, seems like what Rachel mentioned about researching everything thoroughly for herself--sometimes is our only option.

Like Julie said to me awhile back, it's especially hard when our doctors that we do have trust in don't agree. How much worse when we don't know if we can trust or not.

Sherry

mftnchn Explorer
mftnchn
Posted

I had some real problems with just a very small amount of IV cysteine that they tested me with today. So I'm not going to be supplementing any cysteine for now. I'm afraid of it.

So no glutathione and no cysteine, both of which tested as very low.

I like the whey idea, Julie, but don't really have time to research and purchase and no opportunity to do ART testing for it either. I'm going to keep it in mind though.

Sherry

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      Dangerously underweight, Perfect gluten free and insomnia

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      Hi guys,  I have been reading this forum for quite a while now, so I decided to create an account and post my story.  I've had celiac disease since September 2015 and yet over the years i have still eaten gluten and gradually went from 65kg to 43kg in a 9 year period. I am severely underweight and  and decided to go gluten free. Age - 34, Male  Weight - 94lb - 43 kg (look like a skeleton, ribs showing etc) Height - 170cm Main symptoms - Severe weight loss + severe brain fog Allergies - (all life threatening) - eggs, nuts, peas, lentils, sweetcorn and many antibiotics. I am on a 100% strict gluten free diet (all made at home) i.e. I only eat:  cooked chicken thighs (with salt+pepper) White rice Bananas, apples, avacados  Brocolli, spinach, beetroot Tuna Water After trying this diet for a week I suddenly developed severe insomnia and can barely get 1-2 hours of sleep, however when I start eating gluten again, my sleep is perfect. I have seen other threads on this forum from people experiencing the same thing, and other people recommending e.g. B12, magnesium etc. However, I highly doubt this insomnia is caused by a lack of vitamins+minerals. I am thinking this insomnia is caused by some kind of gluten widrawal. I am now eating small amounts of gluten daily to see whether the insomnia will improve and gradually reduce the amount of gluten, so my body gets used to the sudden change and the insomnia will stop I am fairly confident this approach will work,  but unsure. The main issue is, I am dangerously underweight now, but sleep is much more important, so I am in a conflicted situation. Your thoughts? Thanks!  
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