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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. cyndyd

    Menopause causing digestive issues?

    I have B12 deficiency. I was sick 2003 to 2006. Recieved cyano shots. My first symptom was stomach full feeling, and it progressed to very bad GERD/burning/weight loss. I had many other symptoms eventually. I did get better slowly with B12 supplements. 2009 I switched to Methyl B12 and...
  2. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Freddd, Do you have a link, story, or any info on B12 deficiency in children or newborns? I have a daughter who is also low in B12. She is 30 yrs old. She has an 8 month old daughter who has been sickly for 3 months. Colds, stomach issues, the start of pnemonia (sp), diarrea that took...
  3. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    One more question Freddd, Isn't the other dibencozide 10 mg instead of the Country Life brand at 3mg? Do folks take one a day?
  4. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    I am getting low on Bright at the moment. I will try to get one without the folic acid. Also next order same with the dibencozide. I think I have the brands noted somewhere. I do take the solgar folate and have since I switched to your suggestions. I take the potassium everyday too 99mg...
  5. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Freddd, I am doing ok. I have recently had stomach issue return. It is still on again off again. I continue to take the fab four daily. I am not so committed to the basics. I do try to get them in, just not all of them everyday. The gastritis creeps up on me still. I was having the heart...
  6. cyndyd

    B-12 - The Hidden Story

    I was not sure where I should post this link, so it is here twice. It talks about Gerd issues. Many folks here have bacterial overgrowth, and this gives some solutions. http://chriskresser.com/get-rid-of-heartburn-and-gerd-forever-in-three-simple-steps
  7. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Hi Freddd! I hope I can still post here. I just came across this link to Gerd, and a possible solution to someone. It talks about the overgrowth of bacteria. I know some of us have a big problem with that. http://chriskresser.com/get-rid-of-heartburn-and-gerd-forever-in-three-simple-steps
  8. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

  9. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Idie, I am ok. I have sinus problem's again. I have been given a few round's of antibiotic's, but problem's keep coming back. I have an appointment tomorrow with GP. She will probably want to do an xray of sinus next. I have tried everything to relieve this, but none work. This started in...
  10. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Rockt, When I take my supp's I take zinc, c, and magnesium at the same time. I always try to take my supp's with meal, as these can cause stomach upset. I always try to take those with full stomach. Try this. Hope it helps. Working up slowly to full dosing is a good idea if you have bad...
  11. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Little Bluestem, I posted a slow way to start Freddd's protocol back on post #34. Go back and read that post. If I were you I would definately get my potassium level up, and keep it there. Supplement and try to eat foods with potassium also. Please don't be scared to take the protocol...
  12. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Hi Rockt, Are you taking everything on Freddd's protocol? Please don't forget it does take time to heal. I had cyano injection's for 3 year's, and then switched to methylB12 sublinguals, + Freddds whole protocol. The cyano injection's did help, but were not going to heal me. The switch was...
  13. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Idie: I do not have Freddd's email. I did email Kevin, and asked him for it. Hopefully he can get a response from Freddd. I told Kevin if he can't give us Freddd's email, to tell Freddd we are concerned, and send our love. How are you?
  14. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Meryl, Dry eye was a symptom for me also. Vitamin A might help with that. I don't know your age, but being 50, or older, and post menopausal are reasons for dry eye. Others are certain types of drugs used to treat high blood pressure, such as central-acting agents and diuretics...
  15. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Valentijn, I'm not sure what you mean by "at odds"? I am certainly not here to push anyone. I am just discussing what I went through, and how I healed. My crash came when I had surgery, when I shouldn't have. Doctor's had no idea how sick I was at the time. I had no diagnosis of B12...
  16. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Justy, The only thing I don't see on your list that I took is Fish Oil, Calcium and dibencozide (adenosylB12) This is a repost from Freddd on Potassium: First, let me say that you should know where your potassium tends to be, whether high or low or midline. The differences in symptoms of a...
  17. cyndyd

    Feeling COLD?!

    Snowathlete: I have vitamin B12 deficiency. When my symptoms were at their worst, I was freezing all the time. I live near Buffalo NY where we have pretty long winter's. It was very difficult for me to say the least. I did not have chill's, like if you had an infection, just cold. I am...
  18. cyndyd

    son 30 what to do? his ultrasound came back fine doc thinks it is all in his head!!!!

    This is the link to the above thread. Detox: Methylation\B12\Glutathione\Chelation\... (28 Viewing) Are derangements in the detoxification mechanisms at the heart of ME/CFS? Hash that subject out here.
  19. cyndyd

    son 30 what to do? his ultrasound came back fine doc thinks it is all in his head!!!!

    Hi Sue, I have read every post here. I don't see anywhere if your son has ever had a vitamin screen testing done. I am vitamin B12 deficient. This deficiency affected my whole body head to toe's. This is a link to the thread on this same site. My story and symptom's are on this thread. (...
  20. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Valentijn: WHEN I WAS AT MY WORST I WALKED TWICE A DAY. I WAS DETERMINED NOT TO LET THIS GET THE BEST OF ME. I HAVE ALWAYS WORKED ON KEEPING MY BODY FIT. I WAS TURNING TO PUDDING. I KNEW I HAD TO KEEP MUSCLE'S GOING. IT WAS VERY HARD DOING EXERCISES WITH THE PAIN I WAS EXPERIENCING, BUT...
  21. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    TO MERYLG, Your quote: I have discovered I get major side effects from Methyl B12 and Methylfolate...leaving me with some problems to sort. Maybe I could tolerate much reduced doses WHAT PROBLEM'S ARE YOU HAVING WITH THESE SUPPLEMENTS? PLEASE DESCRIBE. ALSO, YOUR B12 LEVEL OF 470 IS...
  22. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Justy: FIRST OFF, ARE YOU TAKING POTASSIUM WITH THE MB12 INJECTIONS? THIS IS VERY IMPORTANT TO EVERYONE HERE THAT IS USING MB12. ON START UP WITH MB12, IT CAN CAUSE POTASSIUM TO DROP. ALWAYS SUPPLEMENT AND EAT YOUR POTASSIUM. SECONDLY: PLEASE LIST ALL SUPP'S YOU ARE TAKING. A LIST OF...
  23. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    THIS IS A POST FROM THE PREVIOUS WEBSITE WRITTEN BY SOYCOFFEE. IT IS A WAY TO START SUPPLEMENTS SLOWLY IF THAT IS WHAT YOU CHOOSE TO DO. This is a reprint of my general slow, specific titration method, for those who are anxious about startup symptoms. The one that Arya posted was designed...
  24. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    LIVEFREE: IDIE, AND I BOTH SUFFERED A LONG TIME WITH THE GASTRITIS. WE KNOW HOW BAD IT IS. I WAS ON EVERY PPI OUT THERE BEFORE DIAGNOSIS. NONE DID ANYTHING. THE PROTOCOL IS THE ONLY THING THAT HELPED ME OUT OF ALL THE DRUGS I WAS GIVEN. I DO BREAK DOWN WITH THE PPI'S ONLY WHEN NEEDED NOW...
  25. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Message body Douglas Laboratories B-complex with Metafolin Pure Encapsulations B-complex plus with Metafolin BioCare B-Plex (no folic acid or B12) The dibencozide should be by Source Naturals. THE TOP THREE ARE REPLACEMENT SUGGESTIONS FOR THE (Jarrows) B-RIGHT. PICK ONE...
  26. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    This link is for any newcomers to the thread. It is information on symptoms, and an explanation to why some have this condition. There is a protocol here that has been changed a bit. I will post the replacements for the changed supplements next. Do not reply at this link. Come back here...
  27. cyndyd

    Poll: Freddd's B-12 Treatment Plan

    I see that there are a few here that report crash with protocol. I can say from experience that you have to try to get through those worsening of symptoms. It is part of the healing process. It is your body waking up. The nerve's are coming alive again. Hang in there. Some folks need to...
  28. cyndyd

    Wrong Diagnosis Site - Fredd's Protocol

    Hello all. I have been on Freddd's protocol since 2009. I started B12 cyano treatment in 2006. Cyano injection's once a week for about a year, then once a month. The switch to methylB12 etc. made all the difference to me. Doctor's didn't diagnose me. I am one who didn't have enlarged...