Wrong Diagnosis Site - Fredd's Protocol

I am starting a post here for people from the wrong diagnosis site. Many of the people who posted on the wrong diagnosis site are on Fredd's Protocol and can share experiences and discussions that might help those on this site. The Wrong Diagnosis site has been changed and it is very difficult to navigate. I hope this gives all those people a place to reconnect. I also hope this is not a problem with the administrators on this site.

Idie

 

Idie, this is sorely needed. But do you know how to put a sticky on it so it does not scroll away "Just Like Fredd?"
Does anyone have any word from or about Fredd lately? I hope he will be back. The place is not the same w/o him.

 

I wish I did but unfortunately I'm still learning how to navigate this site. I have not heard from Fredd and I agree that he is missed. He always provokes debate which is very helpful. Hopefully he will reconnect soon. Are you also madanthony?

 

Hi - to get a sticky, you hit the black triangle "report post" on your own message and can then send a message that a moderator will see, requesting a sticky.

 

I havent been posting at that site since it moved. My head dont get around change much.

I hope someone is still there explaining ME to anyone who has its symptom complex.

 

Tania, people have left posts directing others here. But what Fredd used to do is go to the other topics and find people with these problems and trawl them in. There is no one doing that anymore.

Thanks, Sasha for the sticky info!

 

DrD, I thought you might find this of interest since it impacts the NMDA receptor:

http://www.ncbi.nlm.nih.gov/pubmed/12213817
A novel enhancing mechanism for hydrogen sulfide-producing activity of cystathionine beta-synthase.
Eto K, Kimura H.
CBS (3 regulatory domains activated by p5p, SAMe and redox [13])

CBS activity is induced by SAMe (via enzyme stabilisation) [14], testosterone [15], vitamin D [16], and by neuronal Ca2+/calmodulin [17,18]. CBS is modulated via redox (fe(III) & CO) [13,19] and notably inhibited by peroxynitrite [20
H2S is produced from cysteine by cystathionine beta-synthase (CBS) in the brain and functions as a neuromodulator. Although the production of H2S is regulated by Ca2+ and calmodulin in response to neuronal excitation, little is known about the molecular mechanism for the regulation in CBS activity. Here we show that four cysteine residues of CBS are involved in the regulation of its activity in the presence of Ca2+ and calmodulin. Sodium nitroprusside (SNP), a modifying agent for cysteine residues, enhances CBS activity, whereas N-ethylmaleimide, an alkylating agent for cysteine residues, completely abolished the effect of SNP. Site-directed mutagenesis of the 13 cysteine residues of CBS identified four cysteine residues that are involved in the regulation of CBS activity by SNP, and two of the four residues are involved in the regulation of the basal CBS activity. The enhancement of CBS activity by SNP is independent of nitric oxide production. In the presence of Staphylococcus aureus alpha-hemolysin, which permeabilizes the cell membrane, exogenously applied SNP enhances the activity of CBS in intact cells. The present study demonstrates a novel mechanism for the regulation of CBS activity and provides a possible therapeutic application of SNP for the diseases in which CBS activity is deficient.

Wiki says of calmodulin: CaM mediates processes such as inflammation, metabolism, apoptosis, smooth muscle contraction, intracellular movement, short-term and long-term memory, nerve growth and the immune response. CaM is expressed in many cell types and can have different subcellular locations, including the cytoplasm, within organelles, or associated with the plasma or organelle membranes. Many of the proteins that CaM binds are unable to bind calcium themselves, and as such use CaM as a calcium sensor and signal transducer. CaM can also make use of the calcium stores in the endoplasmic reticulum, and the sarcoplasmic reticulum. CaM undergoes a conformational change upon binding to calcium, which enables it to bind to specific proteins for a specific response. CaM can bind up to four calcium ions, and can undergo post-translational modifications, such as phosphorylation, acetylation, methylation and proteolytic cleavage, each of which has potential to modulate its actions. Calmodulin can also bind to edema factor toxin from the anthrax bacteria.

I also found this:
http://www.clinsci.org/cs/120/0099/1200099.pdf
...vitamin D...up-regulates expression of metallothionein, a free radical scavenger protein with photoprotective properties [120].
(I take 7000 mg D/day)
The enzymes of the transsulfuration pathway also have the capacity to catalyze the desulfhydration of cysteine. Recent studies demonstrate a role of the transsulfuration enzymes, cystathionine gamma-lyase and cystathionine beta-synthase, in catalyzing the desulfhydration of cysteine in brain and smooth muscle. The H2S produced from cysteine functions as a neuromodulator and smooth muscle relaxant. In glutamatergic neurons, the production of H2S by cystathionine beta-synthase enhances N-methyl-D-aspartate (NMDA) receptor-mediated currents. In smooth muscle cells, H2S produced by cystathionine gamma-lyase enhances the outward flux of potassium by opening potassium channels, leading to hyperpolarization of membrane potential and smooth muscle relaxation.

I see there is already a CFS site that knows about the effect of calmodulin, If you are not aware of it you may want to take a look: http://bb-cfs.blogspot.com/2010/07/m...egulation.html

 

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 red blood cells, but still have B12 deficiency. My initial B12 level was 261...........

Subject: my story

Oct 2003 start Now I know everyone is different,so you may have some or all of these symptoms. Get ready, there are a lot of them. First off was a bloated, full feeling after dinner. Only dinner. That lasted for a while then progressed to every meal along with severe gastritis. It worsened slowly then added chest pain with it. I then started to get weaker and weaker. I knew this was not normal for me. I am a hard working, fit, 50 year old female. I usually run circles around my teenagers.

This all slowly progressed until one night in May 2004. I was getting scared about the chest pain and dizziness I was feeling. I went to the ER. I was put on heart monitors and evaluated. I went home with a script for carafate (stomach coater) and blood work. I followed up with regular doctor whose 1st response was "why so many tests?" I explained how I'd been feeling and he gave me a script for antibiotics(UTI), and an acid reducer(Prevacid). I said "what about my chest pain?" He said "The antibiotics should take care of that". WOW! I might be blonde and female, but I'm not stupid! I was back in the ER the next month (June 2004) with the same symptoms, but worse. Doctors thought chest pain was costalcondritis. Still had UTI. No recheck. This round of antibiotics worked on UTI only. Had stress test, results negative.

In March of 2005 still getting worse. Doctor finally ordered Upper endescope and GI. Results were excessive stomach acid, mild acid reflux and hiatal hernia (small). We did more blood work. Nothing! Still on acid reducers. Gradually other symptoms started to appear. I called doctor more often and made no headway with him. All he did was prescribe muscle relaxers, and antidepressents! Ever try amytryptalene? Put me out a couple of days. Doctor usless never heard me when I said, "I dont want anything that's going to make me feel groggier!" Only tried those meds once. Threw the rest out. The only other test Dr. Usless tried was a gallbladder scan. Negative

I was losing weight. Tried to eat something from the 4 food groups to keep strength up. This was my diet for over a year. Boiled chicken, potatoes, carrots, toast and a can of ensure. Anything that digested easily. Earlier I was eating pudding, milkshakes, icecream, soft food. Doctor usless never told me dairy was out with stomach acid problems! I also lost hunger pang feeling. That took a year to come back.

More symptoms: Weakness: all over (especially in arms, legs and hands. Arms felt like wet noodles, and hands had slight tremor all the time.
Walking: stumbled frequently. If I took a walk (tried twice a day) afterwards my legs would have spasms the whole length. Palpatations under the skin, especially in calf area.
Balance..Would stumble upon rising. No balance in dark.
Muscle spasms: in arms and restless legs
Eyes: Stys, not focusing correctly, light sensitive, right pupil enlarged(freaky) and I saw blue flash out of the corner of my eye. No one ever explained that one! I could not watch TV with a lot of motion, or ride in car. I got carsick because eye's could not handle all the motion. If I went anywhere far, my hubby had to drive, and I had my eye's shut. If I was at stoplight, I had to focus on a single object, and not the moving traffic. Checked and no diseases
Light headed: vertigo, just not alert, felt high everyday.
Nauseated: everyday, strong odors like bus, smoke or gasoline made it worse
Cold all the time, not chills, just freezing
Low grade fever 97.7
Bladder: frequency and incontinent also repeated UTI
Weight loss: Went from 5'6 130 lbs to 115lbs
Short term memory: terrible
Speaking: hard to get words out and make sense. I would slur words frequently.
Skin: sensative, hurt when itching self especially legs
Shock feeling: back of neck (scary) felt like cattle prod might feel. Aching pain in neck, that went up over head to eye.
Heart: palpatations always at night in bed (rapid)
Allergies: allergic to inside and outside. Grasses, mold, and house dust being the worst. Started in early 30's
Pain: in places I never felt it before. back and neck, burning, stabbing pain. Doctor says, "Your not getting any younger you know" . I say, "Its not normal, I know my body!" Pain also between shoulder blades, and hip. All started in neck. I had a huge lump of twisted muscle in right side of neck. Pain in upper abdomen at sternum. Very sensitive. It got so bad, I could not even cross my arms. Doctor diagnosed my upper endoscope as, "your stomach is raw". Gut issues were very severe.
Muscles: soreness..shoulders, neck and back
Depression: set in slowly..very irratable to family members. Jumpy, edgy and nervous. Clenched teeth. All totally not me. Have never been prone to depression.
Excesssive yawning
detonation sounds only I could hear
Eyelid twitching
warm sensation on top of right cheek
metalic taste in mouth

I ended off work on disability. Dr. Usless did nothing more to help me. I kept calling and he finally said when are you going back to work? I said "I'm not better! He gave me one week. I had to go because of disability. I lasted one week, and was back in ER. They gave me some stomach concoction, and another stress test (neg). Dr. Usless said I had him stumped. NO referral NO NOTHING.

OK then. I'm home very ill, and know this doc hasn't a clue. S o I need a new course of action. I feel alone, scared, and frustrated. I have a job I can't do, a family, house to take care of, and all of us are worried. First stop is a stomach specialist. A woman! Dr. Mary listened, and tried a few meds. Some masked, but didn't take care of the problem (severe gastritis). My stomach hurt with whatever I ate. It didn't matter if I ate boiled chicken, or a hot chicken wing! Same results. I researched and thought I had H-Pylori (stomach bacterial inf.) We tried prev-pac (2 antibiotics and prevacid combo) WOW it worked! Guess what? A month later it was back. Tried it again. It worked for a while and came back again. I think it just helped calm the inflamation going on in there. 3rd try of prev-pac did not work.

Dr. Mary would take my chart home, and ponder.(at least she was trying) I also tried rhumatologist and endacronologist. All testing neg. I have an aunt on dads side with rhum arth.

I decided to try a doc here who I knew did stomach surgery, like gast. bypass. I thought he might have an idea about my problem. He ordered a gallbladder scan. Came back positive. I cried because I thought this was finally the answer. The boiled food diet I was on I was putting through the blender by then. Yuk! I entered surgery with thoughts of pizza, breyers vanilla with peach schnapps drizzled on top, and lobster. Within a week of surgery I was way worse. I totally crashed. Found out later that Nitros Oxide depletes body of B12. Working on finding out if that was administered. Would explain alot. Could not believe it.

Dr. Mary suggested I get an MRI on my brain. Called new regular doctor (also a woman) Dr. Michele, and she ordered one. My tests came back and showed unspecified areas. She referred me to Dr. Peter a neurologist. OK now i was really scared! Dr Michele was kind of leaning to MS. I have an aunt on dads side, and sister with MS. I tried not to freak out until I talked to Dr. Peter. I wanted to be told something. Put a name to all this! I just did not want a death sentence.

I have a sweet caring husband, and 4 kids. My youngest 14. What would happen to all of them without me? Many times I thought the worst. Please God no MS.

My appointment with Dr. Peter was long and exhausting. He tested me and we talked. He assured me that the leisions were not MS (HUGE SIGH OF RELIEF) He also told me he would not abandon me. He would figure this out! He ordered bloodwork. I cried because it was a relief to find a doc that was sincerely concerned. My second visit he ordered a lumbar puncture. I agreed.

In the meantime, I'm reading a column in the paper. A doctor question and answer column. It's called Dr. Gott. Someone asked about B12. He gave a few symptoms(research only gives a few also). I showed my husband, and he said to call the doc. Dr. Michele ordered it, and it came back low. I started injections in 2006. I asked Dr. Peter if we could put off the lumbar puncture. He said yes, but wanted to monitor me along with the shots. This took a lot of patience.

I received cyano B12 shots for 6 months once a week before I felt anything! It took almost 2 years to heal enough, along with physcial therapy to get my body going again. I was a mess! The whole time I had MS in the back of my mind. Nothing happened for quite some time.
Its a very slow comeback. Eventually I went to shots once a month. This was never enough, as I felt it before month was up. I took cyano sublinguals inbetween shots, but that didn't help much either. Eventually symptoms lessened. Not all went away. This after 2+ years of injections and subs.

I still have stomach upset.. My eyes will never be the same. Vertigo comes back once in a while. I still lose my balance sometimes. The pain is my biggest beef. Im back to work, and do too much, like the old me. I'm OK with that, and I deal with the pain by keeping busy. I've been called stoic. No meds. Do not want any. Stomach can not tolerate them anyway. I'm just determined not to let this get the best of me.


If I did not see Dr. Gotts article I'd probably be dead. I'm happy I'm alive. I found out after the diagnosis, that my Dads Dad had pernicious anemia. Inherited? Familial. My regular Dr. now screens all patients at their physcial for B12 because of me. Then there is my Dad. He passed at 73. He was diagnosed with Alzheimer's disease. I strongly feel he had B12 deficiency too. I did not know anything about this when he was ill. I was headed in the very same direction. His symptoms appeared, and he was gone in 3 years. He had a strict health care proxy.

All above written before I switched to active forms of B12.......

In March 2009 I found this website www.wrongdiagnosis.com "B12 deficiency commonly misdiagnosed". Did some more research, and decided to switch to the active B12 forms Methyl and Dibencozide. It was the best move I could have made. Within the next year all the lingering symptoms are pretty much gone. The worst for me being my stomach issues and pain. I walked daily last summer without any pain. I can now eat without gastritis. No vertigo, or restless legs. I finally have a pair of glasses I can see out of. (Reading is a hobby) Thankyou!!!

I just found out that my husband also 50, has a low level. His doc didnt even bat an eye at 345. I had him test B12 level, because of fatigue and low libido. I had to go too, and try to get him up to speed on the subject. My older daughter (27) had hers tested. Again, her doc didnt react. Hers was 311. Working on getting my 15 yr old from pediatrician
who wont check her to my own doc who will test her. We are all on the Methyl B12 and Adenosyl B12. Hope this helps someone else.

Update Nov. 4 2011
Thanks go out to Freddd, Kevin Millhill, Idie, and many more from old website. The site was a wonderful place to learn about this condition.

Today I can say I am pretty much healed of all above symptoms. Most recent revelation is the fact I am not allergic to anything now. I was just tested again, because of cronic sinus problems. Nettie pot is my new tool. lol I have also learned that because of what my stomach has been through I need prevacid when I take an antibiotic. If I don't take it the gastritis comes back for about 3 months. UGH! If I have vertigo now, it is sinus related, not B12 related. If I have pain, it is a joint (sacral area), and normal aging. All and all I really have nothing to complain about, and that feels great!

I am here now to help in any way I can.

 

Any stresses will make a person be using up more B12.. so not just due to anethestics but also surgery stress comes into things too.

Im glad to hear you've recovered from so different symptoms with treating B12 deficiency.

 

that's a pity. I think I used to find at least 1-2 people every fortnight wandering their forums who probably have ME but hadnt been diagnosed thou seeking for years and were wanting to know what they probably have. (I must of directed at least 100 people to to the PR site or the aussie ME/CFS site from there over the years).

 

I'm glad you got off the cyanocobalamin. The cyanide in it is easily handled by healthy people, but can create an additional problem on people who can't detox normally. Very glad to hear you're doing so much better!

One thing that wasn't very clear: do/did you have post-exertional malaise?

 

i found you guys. Yes this is very interesting. Regarding your comments on digestive enzymes, do you have any medically technical links on long term use of digestive enzymes, risks, etc.

I understand the burning a hole in your stomach, however the ones that i am taking are pH balanced. I don't have burning (yet) and have been on them about 2 weeks.

I noticed the rosacea flares have subsided. This is in accord with the fact that if i stop eating the rosacea fades away. My theory is leak gut and my inability to adequately digest proteins and carbs, as well as fats completely, leading to leakage downstream into the blood, causing an auto-immune type flare up (that manifests itself as rosacea). This theory has been proposed and i was quite surprised when the rosacea flares modulated. Anyways, i will not be fully convinced until it continues for at least 2 -3 months.

Speaking of NMDA, L-taurine is a modulator. It is one thing that definitely helps me sleep longer and better.

http://www.google.com/search?hl=en&...0l6766l14l14l0l6l6l0l547l2563l0.1.3.2.0.2l8l0

 

i found you guys. Yes this is very interesting. Regarding your comments on digestive enzymes, do you have any medically technical links on long term use of digestive enzymes, risks, etc.

I understand the burning a hole in your stomach, however the ones that i am taking are pH balanced. I don't have burning (yet) and have been on them about 2 weeks.

I noticed the rosacea flares have subsided. This is in accord with the fact that if i stop eating the rosacea fades away. My theory is leak gut and my inability to adequately digest proteins and carbs, as well as fats completely, leading to leakage downstream into the blood, causing an auto-immune type flare up (that manifests itself as rosacea). This theory has been proposed and i was quite surprised when the rosacea flares modulated. Anyways, i will not be fully convinced until it continues for at least 2 -3 months.

Speaking of NMDA, L-taurine is a modulator. It is one thing that definitely helps me sleep longer and better.

http://www.google.com/search?hl=en&s....1.3.2.0.2l8l0

 

Off topic (but Freddd always stated nothing is off topic)

Just wanted to post this interesting link with several references to the gut and serotonin. I am convinced that my B12 issue a few years back was due to gut and gut absorption issues even though i did not test positive for the Intrinsic factor Ab and PA was negative.

I know that several of the members of Freddd's site had/have gut related issues as well.

This link has several references regarding cutting edge research on IBS, Crohn's and serotonin. I don't have Crohn's, but i find this very interesting.

http://lib.bioinfo.pl/paper:17481962

http://www.dovepress.com/amino-acid-responsive-crohn39s-disease-a-case-study-a5846

 

DrD, you need an avatar (I am curious 2 see what avatar u will pick)

DrD's post: http://www.dovepress.com/amino-acid-responsive-crohn39s-disease-a-case-study-a5846
-----
I know quite a few people with Chrohn's so I will pass this on. This Dr. Marty Hinz has done research on depression too I see. Unfortunately you have to get medical establishment assistance for his stuff because he uses some delivery method I never heard of. It's not do-it-yourself, but if you can solve a lifelong problem in only a few days, it does look worth it!

Sally Pachaholic [sic!] in her book on B12 had said B12 deficiency could cause either Chrohn's or IBS (I forget which]. I had forgotton about that.

How how r u? Glad to see u made it here. We miss your informative updates!

I am curious about the digestive enzymes you take because I've heard that a lot of elderly people who really can;t afford much in the way of lots of vitamins settle on taking digestive enzymes as their highest priority health maintenance option (figuring that if they can just get the maximum vitamins out of the food they already eat, that would go a long way toward maintaining health). It sounds like a good strategy to me and I always wondered if I could skinny down on the amount of vitamins I take if I added digestive enzymes.

But I've never had the courage to try it because -- with all the vitamins I take, I'm afraid it would burn a hole in my innards.

I think I mentioned before about a guy telling his story on the web who said he kept asking his doctor why. Why did he have IBS? And whatever the answer was, why that, and why again? He finally got the answer that he did not make enough digestive enzymes! So he takes them and no longer has a problem. (I would have kept asking why myself. Because it is HCL hitting the small intestine that triggers the release of digestive enzymes. And many of us do not make enough HCL (including me, but so far I think I'm holding the line)).

Hm, I think I am about to ask what enzymes you take exactly and I think you are going to answer that that url in your other cryptic note is the product?

Responding to something on another website is a bit cryptic you know. I'm afraid I didn't even get it at first. I would like to point out this lovely feature here called an "edit" button. You can edit the note to replace it with something less cryptic or possibly delete it altogether. I notice my own quote was rather cryptic since I copied it from somewhere else, and it was really just a blatant attempt to get you contributing again. )

I used to get leaky gut under stress and for me zinc took care of it. It may be the digestive enzymes are helping you absorb zinc. (Or not, for there could be many ways to achieve the same result). Dr. Yasko says that high ammonia can suppress stomach acid which would suppress pancreatic enzymes. And high ammonia causes glutamate toxicity, something else you have had. I hope you are making sure to take enough magnesium? A more medically accepted reason for insufficint digestive enzymes is hyperthyroid. These are possible things to look into if these problems resurface.

So, DrD, what sort of avatar will you choose? It's like buying a car -- not just any avatar will do, you know.

Take care,
Rydra

P.S. I did not know that Freddd always stated nothing is off topic. I think it's great though. Health problems are very innterrelated. A whole lot of them can stem from a seemingly disparate base cause like poor digestion.

Also - if you ever run across a list of things to avoid because they disrupt your hormones, shoot it my way. I have discovered that I cannot function in the presence of flea control products because they work by disrupting androgen hormones (blocking the receptors). I'd be obliged. Take care

 

Cyndyd, I am also glad to see you made it here. I think your story is really inspiring and I hope a lot of people see it. I think your story would resonate with a lot of people here if they saw it, but it's hard to find things in this warren of threads. I wanted to say hi before but I thought I'd just leave your story on the top of the topic as long as possible to give more people a chance to see it. You were extremely helpful explaining startup symptoms and stuff like that that newbies always ask at the old site.

There was a topic somewhere in this warren in which someone asked if anyone knew anyone who had actually been helped by these protocols. I really didn't know your story before, but it is just the sort of thing they were looking for. If I had to guess I'd say it was under the Treatments thread. If I find it again I'll tell them to review your post.

Take care,
Ryrda
bt only that you were one of the people who had a good grasp on start up symptoms and titrations and all that stuff about Freddd;s protocol that newbies always ask.

 

Quote Originally Posted by merylg View Post
Hi Rydra,
Thanks for your reply. I basically agree with the approach you have explained to me, and I am some way along the path! I basically started a few months ago on the SMP, then moved on to Freddd's Methylation Protocol. I need to stock up on a few individual supplements and a few "showstoppers".

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.
I do tolerate the following: Hydroxy B12 (From Rich's SMP)
Adenosyl B12 (Dibencozide, active B12)
Folinic Acid (as Calcium Folinate)

I have a normal ESR. High Red Cell Folate 2087 nmol/L (776-1784) yet ?apparent functional deficiency.
Vit B12 470 pmol/L (145-637) but ?apparent functional deficiency.
Slightly raised CRP
Elevated IgA
Slightly elevated ALP (Other Liver Function Tests are OK) No evidence of Paget's on X rays or full body bone scan.
HLA B27 Neg but ??Psoriatic arthritis
RF Neg & most other Autoimmune screening tests Neg
Diagnosed Chemical Contact Allergies (by patch testing)
Diagnosed Salicylate Sensitivity
Food Intolerances
Food Allergies (True type) ...white potato, eggplant, coffee
IgE Allergies (Skin Prick testing) too many to mention
Drug Allergies & sensitivities...Plaquenil, Vioxx, Cymbalta, Pariet, Nexium
Widespread Arthropathy, Osteoarthritis spine, Degenerating discs, Bulging discs, Scoliosis

I am feeling really sick and like I have some serious metabolic issues going on. This is why I plan to have the genetic testing done, but I realise the limitations there. Thanks Rydra.

meryl PS I have recently seen a Rheumatologist, Endocrinologist, and my GP...among others
Meryl,
If you would care to repost this here: http://forums.phoenixrising.me/showt...Protocol/page2
I would be happy to give a try at helping you (with the help of that group of people).
I'd like to know everything you're taking. (You know judging from what you already wrote I am probably going to say your protocol needs serioous beefing up?!)
I don't know anything about driugs, since I don't take them.
Psoriasis and psoriatic arthritis (as well as allergies) responds greatly to high dose omega-3. (You know Fredd's protocol calls for omega-3 as part of the most basic nutrients? ) Well to avert allergies you need 7-9g/day. This is per The OmegaRX Zone by Dr. Barry Sears, PhD Lipid Science and author of the Zone Diet. The omega-3's have priority over arachadonic acids for the same enzymes and they use them up so that inflammatory cytokines cannot be poduced from arachadonic acid. It works. I searched out a paper for someone with psoriasis and vaguely recalled it saying that with omega-3 you can cause psoriatic lesions to actually heal over time so they don't just go into remission.

Life Extension cites studies that osteoarthritis is improved with SAMe. (So if we get your methyl cycle working, that will be a big part of it). However if you have osteoporosis, look at this paper: http://journals.cambridge.org/downlo...9cdaa4de02bcf5 and here's the bit inside (in which bone mass is increase with this ratio of ca:zn:cu:mn -- 1g:15mg:5mg:2.5mg):

perhaps the question we should be asking is: do dietary
supplements of Zn and Cu reduce bone loss in osteoporotic
patients? The most compelling evidence to suggest that they
do comes from the work of Saltman & Strause (1993). They
conducted a double-blind placebo-controlled study in which
a group of 137 post-menopausal women were divided into
four groups. Each group received a placebo, Ca (250 mg,
four times daily), trace minerals (mg/d Zn 15, Cu 5, Mn 2-5)
or both Ca and trace minerals. Bone mineral density was
measured at baseline and after 2 years of the supplementation
regimen. The results revealed that the percentage
changes in bone mineral density were: placebo 2-23, trace
minerals -1-66, Ca -0-5, Ca + trace minerals +1-28. The
change in bone mineral density in the group treated with Ca
and trace minerals was significantly different from that for
the placebo group (P = 0-036), clearly supporting a therapeutic
role for Zn and Cu in the treatment of osteoporosis.

If you have trouble absorbing copper and zinc it may be that you need more metallothionein. I thought I read DHEA raises that. It is known that DHEA also raises bone mass (it is known estrogen helps women absorb copper)). So have you tried hormone replacement? Because they say you should start at the top when trying to heal since hormones are FAR more difficult to get around than genes IMHO.

I have to go. I only barely looked at this, but I really have little time lately.

TAke care
Rydra

 

Rydra wrote:
I'd like to know everything you're taking. (You know judging from what you already wrote I am probably going to say your protocol needs serioous beefing up?!)

Hi Rydra,

Here is what I currently take daily:
5 x Vit D3 (to total 5,000 IU/day)
1 x Nattokinase
1 x Blackmores BioZinc (Zinc 25 mg, Mg 25 mg, Manganese 2 mg, 750 ug retinol equivs, Vit B6 50 mg)
1/2 x Folinic Acid (Calcium Folinate 250 mcg/day)
3 x D-Ribose
3 x 3 Magnesium (to total 900mg Elemental Magnesium per day)
2 x Vit C (to total 1 gm/day)
2 x Fish Oil (to total 2 gm/day)
1 x Lecithin (1.2 gm)
1 drop sub-lingual Hydroxy B12
1 x Adenosyl B12 (Dibencozide, Active B12, Country Life)

I was recently also taking 2 x Neuro. Health Multi (Holistic Health) but could not tolerate some aspect of it so stopped. I therefore need to replace a lot of things as separate supplements, plus some of it's ingredients are not compatible with Freddd's Protocol. So I'm working on that next!

Anyone is welcome to comment! Thanks for your help so far Rydra. I value your input! I realise I need to increase the Fish Oil, tried a liquid by teaspoonful once but too "ick", suppose it will be more gel caps then, or maybe Krill Oil?

meryl

 

Cyndyd, Idie, Mogy, can you get started helping Mery with whatever advice you have about starting up when you have reactions? I did not have startup issues. Also I lost track of the mods to Fredd's protocol - can you list what brands of various B vitamins yiou settled on? I think it was Pure Encapsulations? Not at all sure re: the dibencozide. I am in class so can't do too much with this right now but I'll get it in a bit. And I can list what I take but many seem to have issues with some of the ones I take.

Rydra

P.S. to Mery: Mery I realise that if you can tolerate folinic acid you may tolerate what I actually take, but you should consider that maybe it is the folinic acid holding you back from success (maybe you tolerate it, but does it work for you?). I tried going off folinic acid for 2 weeks and there was no change so I went back to the supplements I like.

Also, for anyone to help you effectively we need more detail about how you feel and what you are diagnosed with, or think you have (Do you have ME/CFS for instance? Neurological problems? We can help you with your other symptoms but you mentioned little about the methylation symptoms that cause you to find this website. I just think knowing a littl emore about those symtoms will help people. And when you say you have major side effects to the mB12, what are they?). I think the community can help more if we know more.

 

Mery
I typed up my vitamin list but I put it in a Word Table and it comes out gruesome here. But I have to go to bed now so hang on and I'll put it in tomorrow.
Please note that I am sensitive to many/most drugs and chemicals which account for that I am not symptom free 100% of the time. I am only learning the role chemicals play in knocking out my health protocol.

Rydra