Wrong Diagnosis Site - Fredd's Protocol

[Rockt]

Thanks Rydra.

I use oil of oregano the same way as you - when needed. For example, I seem to get a lot of sore throats and if take o. of o. at the first sign, I can usually forestall a serious bout.

I took olive leaf extract once before and remember feeling a bit better, so I'll try it again.

 

[Little Bluestem]

I am fairly new here and in the process of reading though Freddds B12 - The Hidden Story thread. I am not on the Wrong Diagnosis site, but was told this is the place to post current questions about Freddds protocol.

I have purchased some Folopro and an eager to start taking it. Today I read that in early 2010 Freddd recommended getting up to 3 mg methylB12 before starting methylfolate. Is that still the thinking?

I also read about hypokalemia. I am currently taking 1000 mg Jarrow sublingual methylB12/day and have been for a couple of years. I have had tissue mineral analysis done and am low in potassium(K). At the last test it had responded little to supplementation. I am due for another test. Should I wait until my K level is normal before increasing the mb12? Should I have a serum K test done?

I have been taking Jarrow B-Right since Sept 1. For several years prior to that I took a coemzyme B complex that contained 25 mcg dibencozide. I recently finished a bottle of Now B12, which contained 300 mcg dibencozide. (The B-Right is the only one I am currently taking.) I do not know how much, if any, ab12 I absorbed from these. I am currently looking for pure ab12. Should I be taking ab12 before I start the methylfolate?

So far, I have not had a big reaction to the small amounts of mb12 & ab12 that I am taking. I do have a general tendency to be reactive to things. I want to avoid any big reactions if possible. Freddds Startup For People With Big Reactions says to discontinue L-carnitine before starting the Bs. Should I stop it at this point?

 

[DrD]

DrD, I was looking a little bit into rosacea...which has a long history of being blamed on h. pylori...looks like reviews have refuted that of late. I see that it's connected to gut issues though and look what I found about gut issues (I knew about this paper as I have had diminished HCL myself for at least 5 years) but I wasn't sensitized to CFS at that time. Here is a very interesting quote from the paper:
http://orthomolecular.org/library/jom/2002/pdf/2002-v17n03-p163.pdf

Niacin (Nicotinic Acid) a Putative Treatmentfor Hypochlorhydria: Re-analysis ofTwo Case Reports
Jonathan E. Prousky, N.D., FRSH;1 Claire Kerwin, N.D.
Parietal cells contain the largest concentration of mitochondria among all eukaryotic cells.

So that's probably why so many CFSers have gastrointestinal issues (and also infections because HCL is the PRIME defense against infection). And it's disquieting to me because I also have that issue. I take 1g. Olive Leaf Extract/day to ward off any issues from not enough HCL. If you think rosacea is connected to gut pathogens, you might try Olive Leaf Extract (it is a vasodilator though so if you have low b.p., then not a good idea).

Interestingly 5 years ago when I discovered I wasn't making much stomach acid I tried all kinds of things to raise my stomach acid levels but the only thing that would make my stomach growl was estrogen (after PMS there was life!). And yet it was a pathetic growl, like most of the parietal cells were gone or repressed at 48. I tend not to think about that because I have no pathogen growth and nothing upsetting me, but it is probably the reason I have to take so many vitamins.

I thought I'd mention that I used to have ulcer symptoms but I killed h.pylori with Olive Leaf Extract, Oil of Oregano, and 3 days of colloidal silver. Did that 20-30 years ago and no ulcers ever since.

hi Rydra, thanks for the interest in Rosacea. I keep this beast under control mainly through diet, although i had to recently go back on low dose doxycycline to get it fully under. It if stop eating the rosacea goes away. I always knew in the back of my mind that it, like so many other disorders and diseases, is related in large part to the gut. I must have researched rosacea more than any other disorder. It seems like such a simple disorder, but the medical world really has no idea what causes it. Most likely it is multi-causal (like other complex disorders, like autism, etc). I would love to take the olive oil but as you noted it is a dilator. If anyone ever needs a list of dilators let me know.....

I think the digestive enzymes are helping somewhat, due to the normalization of the stomach acid, that and assisting in the proper breakdown so it does not leak downstream into the circulatory/blood.

The gut, as you know, forms a very large part of our immune system as well.

Thanks for the interesting article on Niacin. (Niacin is the best way to induce a flush on rosacea, so the olive oil route would be safer for me)

By the way doxy at low dose has potent cytokine modulation effects. If you want more info on this one let me know.

 

[taniaaust1]

Tania - not sure from your msg what you think I said wrong? Maybe I was unclear but I was actually reporting what my doctor said to me - he wanted to determine if I had adrenal issues by measuring bp laying down and then standing...

So...not sure what?

Take care
Rydra

sorry Rydra to confuse you with what I was refering too.. I wasnt refering to you talking about your own case thou now you have explained you were and that you got that from your doctor (I wasnt even aware you had these issues yourself).

but that part saying it isnt possible for a person to have adrenal issues and have blood pressure going high when standing or have high BP and also have adrenal issues. .. my reference was refering to this view of what you said below.

. Blood pressure is supposed to rise a certain amount when you stand and if it does not you have adrenal issues. There are several other tests. You wouldn't have high blood pressure by any chance because the easiest way to tell is if despite having high blood pressure, your b.p. goes low.

Unfortunately that is the thing which having ME.. it often dont follow the normal medical rules that most doctors know as many strange things can be happening in the illness eg me who has had low sodium levels before, low cortisol (adrenal issues) and BP which goes sky high when i stand. There are others at this site which have ME, adrenal issues but have the high blood pressure all the time. So due to that I just got to say your doctor is wrong and there IS A CHANCE someone can have these issues with also high BP (due to the BP dysregulation etc which goes on in someone who has ME). but yeah.. low BP would be the more norm.

A doctor esp when it comes to ME people, should not rule out things and say there is no chance of you having something without proper tests done to rule them out

sorry i so strongly had to point that out.. im sick of doctors missing things due to lack of ME understanding which often leads to things going different to what they think could possibly happen.

...

sorry i still havent replied to your pm to me a while back. I will get there some time (I also have others in my inbox awaiting for a while to be replied to). Ive just been busy dealing with the pms currently trying to help me find good doctors or sort my meds/supplements out... its all a bit much.

anyway.. just wanted to let you know I still havent responded and will do some time.

best wishes
Tania

 

[richvank]

Niacin (Nicotinic Acid) a Putative Treatmentfor Hypochlorhydria: Re-analysis ofTwo Case Reports
Jonathan E. Prousky, N.D., FRSH;1 Claire Kerwin, N.D.
Parietal cells contain the largest concentration of mitochondria among all eukaryotic cells.

So that's probably why so many CFSers have gastrointestinal issues (and also infections because HCL is the PRIME defense against infection). And it's disquieting to me because I also have that issue. I take 1g. Olive Leaf Extract/day to ward off any issues from not enough HCL. If you think rosacea is connected to gut pathogens, you might try Olive Leaf Extract (it is a vasodilator though so if you have low b.p., then not a good idea).

Interestingly 5 years ago when I discovered I wasn't making much stomach acid I tried all kinds of things to raise my stomach acid levels but the only thing that would make my stomach growl was estrogen (after PMS there was life!). And yet it was a pathetic growl, like most of the parietal cells were gone or repressed at 48. I tend not to think about that because I have no pathogen growth and nothing upsetting me, but it is probably the reason I have to take so many vitamins.

I thought I'd mention that I used to have ulcer symptoms but I killed h.pylori with Olive Leaf Extract, Oil of Oregano, and 3 days of colloidal silver. Did that 20-30 years ago and no ulcers ever since.

Hi, Rydra (and the group).

I think you are right on about the parietal cells. In ME/CFS, there is mitochondrial dysfunction. The mitochondria do not produce ATP at as high a rate as normal. This has been shown by the testing at AcumenLab in the UK, and is documented in the paper by Myhill et al.

The parietal cells have such a large number of mitochondria because they need a lot of energy to push hydrogen ions (for making hydrochloric acid) into the stomach, against a very large concentration gradient. If they can't make ATP fast enough, they will not be able to move hydrogen ions into the stomach fast enough to maintain normal acid levels there.

I believe that the primary reason for the mito dysfunction is glutathione depletion and the partial methylation cycle block. This allows the rise of oxidizing free radicals and toxins, lowers the supply of substances needed by the mitochondria, such as carnitine and Co Q-10, and upsets the function of the membrane ion pumps, so that normal levels of essential minerals cannot be maintained.

The lack of suficient stomach acid causes many problems in the digestive system, including not killing the yeasts and unfriendly bacteria that come in with the food.

I believe that it is necessary to treat both the digestive system problems and the partial methylation cycle block in many cases of ME/CFS, because these two aspects have so many interactions. Neither can be brought completely to normal unless the other is in pretty good shape, too.

Best regards,

Rich

 

[cyndyd]

Dear Cyndyd,

Hi Cyndy---if you are reading this thread, could you do me a favor and send a private email to Fredd to see if he is ok. I used to have his private email but now I can't find it. I know that you, Kevin and Fredd emailed privately for a while. I am getting concerned because it has been a long time since Fredd has posted. thanks much!!

Idie

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?

 

[cyndyd]

To anyone who has radically improved from Freddd's protocol, especially those from Wrong Diagnosis, how long didi it take to feel... radically improved?

I've been at it since March. Had a decent improvement in physical energy, crashed big time, have gotten a decent degree of the physical energy back, (walking daily, less PEM), but still suffer badly from mental PEM and brain fog.

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 all it took. I would say it took me a year of Freddd's protocol to do the trick. It is hard for me to advise there, as I was already somewhat healed with the cyano. I can say there is a huge difference in the different B12's.

 

[cyndyd]

I am fairly new here and in the process of reading though Freddds B12 - The Hidden Story thread. I am not on the Wrong Diagnosis site, but was told this is the place to post current questions about Freddds protocol.

I have purchased some Folopro and an eager to start taking it. Today I read that in early 2010 Freddd recommended getting up to 3 mg methylB12 before starting methylfolate. Is that still the thinking?

I also read about hypokalemia. I am currently taking 1000 mg Jarrow sublingual methylB12/day and have been for a couple of years. I have had tissue mineral analysis done and am low in potassium(K). At the last test it had responded little to supplementation. I am due for another test. Should I wait until my K level is normal before increasing the mb12? Should I have a serum K test done?

I have been taking Jarrow B-Right since Sept 1. For several years prior to that I took a coemzyme B complex that contained 25 mcg dibencozide. I recently finished a bottle of Now B12, which contained 300 mcg dibencozide. (The B-Right is the only one I am currently taking.) I do not know how much, if any, ab12 I absorbed from these. I am currently looking for pure ab12. Should I be taking ab12 before I start the methylfolate?

So far, I have not had a big reaction to the small amounts of mb12 & ab12 that I am taking. I do have a general tendency to be reactive to things. I want to avoid any big reactions if possible. Freddds Startup For People With Big Reactions says to discontinue L-carnitine before starting the Bs. Should I stop it at this point?

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. Reaction's should be seen as your body waking up. Nerve's waking up. Healing starting. If you react to something it mean's your body needs it. Start slow, and work up to regular suggested amount's if it make's you feel better to do so. You have already been taking some of the supplement's so you should be fine. We are here to help you through this. Please post here so we can help you along with anything you need. You can stop the L-carnitine, and start it back up later. First thing....get potassium up.

 

[Rockt]

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 all it took. I would say it took me a year of Freddd's protocol to do the trick. It is hard for me to advise there, as I was already somewhat healed with the cyano. I can say there is a huge difference in the different B12's.

Thanks cyndyd.

I'm taking most of the things, but am still having trouble with several supplements including Bcom, Zinc and vit. E. I try to take one of each, (1/4 zinc - the only one I can reduce in size), a couple of times/week in an effort to work up, but I get side effects, (malaise felt primarily in my head), from these particular supplements and I fear it may be holding me back. Had the same problem with magnesium then tried mag glycinate and it's been fine.

Also tried Sam-e and TMG, but felt crappy and someone suggested "I'm not ready for these yet", whatever that means. L-Carnitine Fumarate is well tolerated and seems to help a bit, whereas Acetyl-L-Carnitine brings on malaise (head).

 

[mogy]

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?

Hi cyndyd and Idie,
Cort has Freddd's email, and he got a response from Freddd who plans to return to the Forum shortly. See the tread " Anybody heard from Freddd?"
cyndyd, have you had any correspondence with Kevin since he stopped posting? It would be great to find out how he is doing.
Thanks,
mogy

 

[cyndyd]

Thanks cyndyd.

I'm taking most of the things, but am still having trouble with several supplements including Bcom, Zinc and vit. E. I try to take one of each, (1/4 zinc - the only one I can reduce in size), a couple of times/week in an effort to work up, but I get side effects, (malaise felt primarily in my head), from these particular supplements and I fear it may be holding me back. Had the same problem with magnesium then tried mag glycinate and it's been fine.

Also tried Sam-e and TMG, but felt crappy and someone suggested "I'm not ready for these yet", whatever that means. L-Carnitine Fumarate is well tolerated and seems to help a bit, whereas Acetyl-L-Carnitine brings on malaise (head).

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 reaction. A lot of folk's here have had quite the rollercoaster ride with healing. Some have mild reaction's. I had worsening of symptom's before I healed. This is common. Try to work through those day's best you can. Don't give up.

 

[Little Bluestem]

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. Reaction's should be seen as your body waking up. Nerve's waking up. Healing starting. [SNIP]

Cyndyd, thanks for your reply. I just now read you start up post! I have been taking OTC potassium and drinking salt water with 1/8 tsp NaCl and 1/8 tsp KCl. I am overdue for a mineral retest, but at my last test the K had improved very little. If it is still not up, I am thinking about asking my physician for a prescription K. My mother has been on one for several years, so it may be a genetic thing.

Both of my parents are elderly and have a variety of health problems. I help them, including cooking their (our) dinner most days and driving them to their myriad health care appointments. They have 3 this week. While they can get along without me for a few days, I cannot be out of commission for very long. That is why I am concerned about start-up reactions.

L. Bluestem

 

[Idie]

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?

Hi Cyndy,

Thanks so much for trying to get a note to Fredd. It sure would be great to hear from Kevin. He has such a miraculous recovery that it be good to know if the protocol is still working for him. I'm doing good and my new shots seem to be working although each round of healing takes time. Right now I'm battling an upper respiratory virus so am feeling pretty miserable. I guess this is one of those 7-14 day deals.

How are you feeling? Like you I still have to be careful with my gut but it is so much better than it was a year ago that I am grateful for the improvement.

Stay in touch.

 

[cyndyd]

Hi Cyndy,

Thanks so much for trying to get a note to Fredd. It sure would be great to hear from Kevin. He has such a miraculous recovery that it be good to know if the protocol is still working for him. I'm doing good and my new shots seem to be working although each round of healing takes time. Right now I'm battling an upper respiratory virus so am feeling pretty miserable. I guess this is one of those 7-14 day deals.

How are you feeling? Like you I still have to be careful with my gut but it is so much better than it was a year ago that I am grateful for the improvement.

Stay in touch.

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 early winter last year too. Pressure, dizzy, and all over feel crappy. Dizzy especially when I am driving. Not spinning, just very woozy. My head feels heavy. When I get out of car I am better, and can work all day. The problem is that the drive is an hour!! This all started when hurricane Irene came up the east coast. It's been bothering me since.

I did get a response from Kevin. I sent you a private message. Let me know if you get it. I am off to do more sinus steaming. Take care

cyndyd

 

[Rockt]

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 early winter last year too. Pressure, dizzy, and all over feel crappy. Dizzy especially when I am driving. Not spinning, just very woozy. My head feels heavy. When I get out of car I am better, and can work all day. The problem is that the drive is an hour!! This all started when hurricane Irene came up the east coast. It's been bothering me since.

I did get a response from Kevin. I sent you a private message. Let me know if you get it. I am off to do more sinus steaming. Take care

cyndyd

I experience a lot of sinus pain and yellow mucous from the sinus cavity, (yuck, I know) and wonder if sinus problems exacerbate CFS? Has anyone been helped by treating sinus problems. I use the NeilMed sinus rinse but it doens't do much. Wondering about sinus surgery?

 

[Idie]

Idie, I am ok. I have sinus problem's again.

Hi Cyndy,

I didn't get your private email. I'm not sure how to access it. Can you advise me? Boy, that sinus stuff is miserable. My daughter suffered with that too. Oddly enough, once she got a big enough dose of b12 things improved dramatically. I don't know how you do it on that hour drive and being dizzy the whole way. Ugh. I remember that was one of my worst symptoms and it took more than 6 months for that to leave. If I don't keep my dose high enough that comes back. Let's figure out a way to send private email. Take care of yourself. I worry for you.

 

[cyndyd]

Idie, I am ok. I have sinus problem's again.

Hi Cyndy,

I didn't get your private email. I'm not sure how to access it. Can you advise me? Boy, that sinus stuff is miserable. My daughter suffered with that too. Oddly enough, once she got a big enough dose of b12 things improved dramatically. I don't know how you do it on that hour drive and being dizzy the whole way. Ugh. I remember that was one of my worst symptoms and it took more than 6 months for that to leave. If I don't keep my dose high enough that comes back. Let's figure out a way to send private email. Take care of yourself. I worry for you.

Hi Idie, To access your messages, click on your own name. Up in upper corner of page hit notification's. Click inbox. Messages should be there.

I had sinus xray yesterday. Should get results tomorrow. Last week I tried one of "grama's" remedies. Horseradish. I bought some shrimp, and made cocktail sauce as hot as I could stand it. The suggestion said to try to get one tsp. down. It punched a hole in the side of sinus that was being stubborn. I feel better, but not 100%. One more thing. I heard on the news last night that use of nettie pot's can cause a brain eating bacteria. Always boil tap water, or just use distilled water.

 

[Rockt]

I heard on the news last night that use of nettie pot's can cause a brain eating bacteria. Always boil tap water, or just use distilled water.

EEK! What next!?

I use NeilMed treatment - http://www.neilmed.com/can/sinusrinse.php - basically salt and baking soda in water, in a plastic bottle that you squeeze to flush the sinsues. I use filtered tap water - hope this won't cause brain-eating disease. Provides some relief, but I think it's relatively temporary because I've done it for a year and still have a yellow mucous discharge about once or twice a week.

 

[Idie]

Hi Cyndy

Ha! Feeling like I'm computer challenged. I clicked on my profile and could find nothing that said notifications. What am I missing?

Hi Idie, To access your messages, click on your own name. Up in upper corner of page hit notification's. Click inbox. Messages should be there.

I had sinus xray yesterday. Should get results tomorrow. Last week I tried one of "grama's" remedies. Horseradish. I bought some shrimp, and made cocktail sauce as hot as I could stand it. The suggestion said to try to get one tsp. down. It punched a hole in the side of sinus that was being stubborn. I feel better, but not 100%. One more thing. I heard on the news last night that use of nettie pot's can cause a brain eating bacteria. Always boil tap water, or just use distilled water.

 

[mogy]

Hi Cyndy

Ha! Feeling like I'm computer challenged. I clicked on my profile and could find nothing that said notifications. What am I missing?


Hi Idie,
Looks like cyndyd has not been around for a bit.
When you log on at the very top. The "Notifications" tab appears at the very top of the page. Right where you log on.
Hope this helps,
mogy