Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

lindalee Enthusiast

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Judyin Philly Enthusiast

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

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

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
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

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
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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



miamia Rookie
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

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

miamia Rookie
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
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

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
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, 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

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

AndreaB Contributor
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

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
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
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

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
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

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
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
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, 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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

    2. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

    3. - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    4. - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    5. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,261
    • Most Online (within 30 mins)
      7,748

    Pbaentine
    Newest Member
    Pbaentine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • marlene333
      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.