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Omg...i Might Be On To Something

Rachel--24

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lindalee Enthusiast
lindalee
Posted

Carla, bare with my spelling please. I think this cold I'm getting over messed that area of my brain up.

The caller asked the dr. about her husband. He had been bitten by a tick and had Rekesiol Disease. He said that Lyme testing was not enough. In other words, what is common in your region...Rekesiol goes to the brain and is degenerative. Dr. Becker is a holestic dr. but said that he needed to go to an infectious disease expert and do a whole panel tick analysis. Besides the above treatment- he said estragulas boosts the immune system. (oil of oregano gel caps 1 am and 1 pm and 5-8 drops under tongue am and pm.

Take a good vit. with the cabbage , kale , brussel sprouts, cabbage added - this they reccomend to cancer patients to build immune system I think.

The other notes I took were on IBS. Do you want those?

I just Googled beta glucan ... apparently it's from wheat, oat and barley along with some other things ... doesn't sound gluten-free, but I bet those other two you mentioned are.

I've never ordered that. www.bioinnovations.net is the web site. I do take his oregano and noni.

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Judyin Philly Enthusiast
Judyin Philly
Posted

hi all

lindalee, can't find it don't think we get it here on comcast

julie..still no word on Evie..sorry

judy

CarlaB Enthusiast
CarlaB
Posted

Though I should say yes to the notes on IBS, I'm ignoring it right now .... :P

Thank you for the info about Lyme.

Green12 Enthusiast
Green12
Posted

Laura, sounds like quite a day you had, glad that is all over for you :) . How do they treat EOS if one gets a dx?

And yes, where is Richard? Must be still looking for his mojo.

Judyin Philly Enthusiast
Judyin Philly
Posted
Laura, sounds like quite a day you had, glad that is all over for you :) . How do they treat EOS if one gets a dx?

And yes, where is Richard? Must be still looking for his mojo.

thanks juliem..wondered about this for laura too.

i don't know anything about this condition.

prayers still coming for you happy lady laura.

judy

rinne Apprentice
rinne
Posted

I am taking Noni along with the Samento, the salt/c are considered to be natural antibiotics if I understood what I read correctly.

Laura, I am glad your test is over and hope you get some answers. I think that's great that you found someone who is able to give you some information and support.

CarlaB Enthusiast
CarlaB
Posted
I am taking Noni along with the Samento, the salt/c are considered to be natural antibiotics if I understood what I read correctly.

Laura, I am glad your test is over and hope you get some answers. I think that's great that you found someone who is able to give you some information and support.

How much samento are you taking? How much Noni? Or is Noni a juice?

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miamia Rookie
miamia
Posted
Miamia,

I see you. :) Did you get your results today?

Andrea-

They told me I have to call tomorrow that the results had not come in yet. I finally talked to my regular doctor though and I have an appt. Next weds. but I started today on the mediciene for the candida I ma nervous about the die off reaction and my reaction to the mediciene in general, but I have to really get rid of the yeast to find out what role it is playing in how badly I have been feeling. I know with candida diet is so important but it is so hard for me to contemaplate cutting anything out when there is so little "In"- in terms of what my body will tolerate. Thanks for checking on me I really appreciate it

Miamia

lindalee Enthusiast
lindalee
Posted

Rhine, I'm not familiar with the Samento. Do you just take a reg. Vit C with the himalyan salt in water?

miamia Rookie
miamia
Posted
Well I took the VitB-12 three times now and I reacted every time. I'm suppossed to take 10 drops 2 times a day. Last night I had an obvious reaction so right now I took 5 drops and still had an obvious reaction. Of course the drops arent just B-12. They have alcohol, stevia extract, flavoring and glycerin. :angry:

I dont wannna take it anymore.....it burns my mouth and makes my face swell up. :angry:

I dont get reactions from my food anymore because I'm only eating my 5 safe foods.....so I'm not happy when I DO get a reaction from something I'm taking. I dont even know what the point of trying to take supplements is when they all have other stuff in them that I cant tolerate. :(

Rachel-

For a while my doc was giving me a shot of b12 that way is was straight b12 without anythign else. Could this be a possibility for you?

Miamia

lindalee Enthusiast
lindalee
Posted
Rachel-

For a while my doc was giving me a shot of b12 that way is was straight b12 without anythign else. Could this be a possibility for you?

Miamia

Miamia, I think if you give those shots yourself its like $10 a month. Are you eating yogurt? I eat it alot and love it now.

rinne Apprentice
rinne
Posted

Both products are from Open Original Shared Link and they are tinctures.

I am taking 15 drops a day of the Noni.

I am scaling up on the Samento, currently at 6 drops a day and every third day I increase it by 1 drop. The maximum dose will be 34 drops and I will rotate 12 1/2 days on and then 1 1/2 days off for at least three months. Apparently it is just as important not to take it as to take it because when you pause the bacteria take the spirochetal form which is easiest to kill.

CarlaB Enthusiast
CarlaB
Posted
Both products are from Open Original Shared Link and they are tinctures.

I am taking 15 drops a day of the Noni.

I am scaling up on the Samento, currently at 6 drops a day and every third day I increase it by 1 drop. The maximum dose will be 34 drops and I will rotate 12 1/2 days on and then 1 1/2 days off for at least three months. Apparently it is just as important not to take it as to take it because when you pause the bacteria take the spirochetal form which is easiest to kill.

How much did you start out with?

miamia Rookie
miamia
Posted
Miamia, I think if you give those shots yourself its like $10 a month. Are you eating yogurt? I eat it alot and love it now.

I can't eat yogurt- no dairy!! I wish though I always liked it when I was younger but I have not been able to eat it for along time. I never looked into doing the shots myself I ahveen't had one in a while.

Miamia

lindalee Enthusiast
lindalee
Posted

Can you eat the kind you make that is fermented? I think you can get a lactose free starter.

AndreaB Contributor
AndreaB
Posted
Andrea-

They told me I have to call tomorrow that the results had not come in yet. I finally talked to my regular doctor though and I have an appt. Next weds. but I started today on the mediciene for the candida I ma nervous about the die off reaction and my reaction to the mediciene in general, but I have to really get rid of the yeast to find out what role it is playing in how badly I have been feeling. I know with candida diet is so important but it is so hard for me to contemaplate cutting anything out when there is so little "In"- in terms of what my body will tolerate. Thanks for checking on me I really appreciate it

Miamia

We'll be waiting along with you for your results. I hope you do ok with the candida treatment. :(

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

Miamia...I'm anxiously awaiting your eos results. I get all nervous when people are getting their test results back. :lol:

Laura....same goes for you but wont be feeling nervous until sometime next week. :P

I'm glad its all over now...I know its exhausting going through all this stuff. Is it treated just by eliminating the offending foods? How do you determine which foods are problematic?

Carla,

Is the Dr. in New York an LLMD? Is that why your friend went here to see him? Are you planning on seeing him regardless of your Igenix results or are you waiting to see what comes back first?

Wow...I am full of questions tonight. :lol:

Sooo....I have decided that I wanna be a BioSET lady. :D

I'm really into all the scientificness...even though I dont quite "get it" yet. :unsure:

Of course it actually has to WORK for me as well.....thats an important factor...cant forget that. :P

If it doesnt work....forget it...I'll stick with my yogurt and cheese job. :D

I told my mom about this tonight.....she laughed and said "Well....if the treatments work and your excited about it....you can always just tell your story online." :huh:

I'M SERIOUS THOUGH. :angry:

She said I would probably need to almost be a Dr. to do this.....I dont think so but I'm gonna find out what is required. B)

rinne Apprentice
rinne
Posted
Rhine, I'm not familiar with the Samento. Do you just take a reg. Vit C with the himalyan salt in water?

I take Vitamin C powder mixed with the salt or Vitamin C tablets. I'm currently just taking 2 1/2 grams of salt and 2 1/2 grams of Vitamin C each day.

How much did you start out with?

I started with 1 drop of the Samento.

The Noni - the first day 5 drops, then 10 the next day and on the third day 15 and I've stayed with 15 a day since then.

I started the Noni 3 days before the Samento.

I've had the B12 injections and it is possible to get the methylcolbamin (spelling) for injections. They have made a big difference.

AndreaB Contributor
AndreaB
Posted
Sooo....I have decided that I wanna be a BioSET lady. :D

I'm really into all the scientificness...even though I dont quite "get it" yet. :unsure:

Of course it actually has to WORK for me as well.....thats an important factor...cant forget that. :P

If it doesnt work....forget it...I'll stick with my yogurt and cheese job. :D

I told my mom about this tonight.....she laughed and said "Well....if the treatments work and your excited about it....you can always just tell your story online." :huh:

I'M SERIOUS THOUGH. :angry:

She said I would probably need to almost be a Dr. to do this.....I dont think so but I'm gonna find out what is required. B)

Not a bad idea. You'd definately know what it feels like to be in the other persons shoes.

I would think it would require lots of schooling, but I'm not sure. Keep us posted, as usual.

CarlaB Enthusiast
CarlaB
Posted

Go for it, Rachel! With your journey to health you would have a special advantage over other people who are Bioset ladies!!

This NY doc is an LLMD. My friend's daughter was really sick last summer and they remembered a tick bite, so they took her to a Lyme Pediatrician in New Haven, Conn. He said that the daughter was too sick for it to be from that recent tick bite and started asking my friend questions about her own health and said the daughter got Lyme from the mother. He said he couldn't treat her, but recommended a NY doc. Apparently the other LLMD that is a little closer to me is in PA, but he's not recommended by a group I can't remember the name of while the one in NY is, so my friend went to the one in NY.

I am going to go no matter what the Igenex results are because my understanding is that they have a high possibility of having a false negative in someone who has been sick for years. Is that right? He said he was positive she had it before he even got the blood work done.

This is all so odd to me ... she and I had been trying to figure out together what was wrong with us when I lived here three years ago. We have the same symptoms, that's why we were always talking about it and sharing ideas.

Thanks for the info, Rhonda.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
This is all so odd to me ... she and I had been trying to figure out together what was wrong with us when I lived here three years ago. We have the same symptoms, that's why we were always talking about it and sharing ideas.

I will answer before Rinne does.....

Hmmmm....Lyme Clan B)

rinne Apprentice
rinne
Posted

Rachel, so you are on your way to being a real Voo Doo woman..... :lol::lol: I think that is great.

Miamia, I hope this medication helps you and that you get some answers soon.

Carla, I know what you mean. I think about the friend of mine with Lyme that I hadn't spoken to in twenty years being the one that made me look at Lyme; if I hadn't heard from her I might still be looking at dietary issues only. I think of it as 'already connected'.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I am going to go no matter what the Igenex results are because my understanding is that they have a high possibility of having a false negative in someone who has been sick for years. Is that right?

Yup...its right. I posted some info about that last night. The sicker people usually will get the false negative result......because all of their antibodies are tied up with the Lyme. They will ususally test positive after being on antibiotics for awhile....because the antibodies are "freed" up once the Lyme starts dying off.

CarlaB Enthusiast
CarlaB
Posted
Carla, I know what you mean. I think about the friend of mine with Lyme that I hadn't spoken to in twenty years being the one that made me look at Lyme; if I hadn't heard from her I might still be looking at dietary issues only. I think of it as 'already connected'.

That's odd, too. In my case, she got diagnosed in Oct., I got tested in Nov. and didn't even know she was diagnosed. Her Ignenx isn't back yet, so it was within just a couple weeks of each other that we were tested. The doc is waiting to put her on antibiotics until he gets the co-infections results back. He uses an integrated approach -- antibiotics, supplements, etc. -- which I know because I've already looked him up on the internet. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel, so you are on your way to being a real Voo Doo woman..... :lol::lol: I think that is great.

ROFL....

:lol::lol:

Yeah....first I gotta get rid of the brainfog so I can actually *understand* how to be a Voo-Doo woman. :lol:

Like Carla said.....I will totally be able to relate to the BioSET patient and the patient would be able to relate to me. :D

I think if I got better and they knew I'd been just as sick as they are....it would give them alot of hope. :)

First things first though....I gotta see if it works. :unsure:

The doc is waiting to put her on antibiotics until he gets the co-infections results back. He uses an integrated approach -- antibiotics, supplements, etc. -- which I know because I've already looked him up on the internet. :)

This is exactly like my Dr.....same thing...waiting for the co-infections....and he also uses an integrated approach. I should get the results of the co-infections soon. :)

I got bad news tonight. I didnt get in to see the LLMD who is coming in December. I didnt make it...I'm 4th on the waiting list for March. :(

There is no *guarantee* that I'll get in when she comes in March. I'm just on the waiting list but I have a good chance. The existing patients are booked first and if theres anything left....the new patients can get in.

I'm not too bummed about it....it might work out better since by March I'll know more about whats going on with the Lyme, co-infections, etc. I think I'll be much better prepared by then and I'll have a better idea of what type of things I'd want to discuss with her.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      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
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      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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