Hi Freddd,
Thank you very much for your previous reply. In reply to your question, I hope this isn't too much information.
My wife is lucky enough to rate a capital "A" for her Ataxia - specifically Cerebellar Ataxia which means damage to the cerebellum. A lower case "a" ataxia is a symptom of ill coordination, balance etc. you might get in another neurological disease such as MS which could be damage to the spine, cerebellum etc.
She had hints over a number of years of imbalance etc. but when she fell her internist finally ordered an MRI in 2004. The MRI revealed her cerebellum had shrunk more than one would expect due to age. Her first neurologist could not find a cause but he referred her to an Ataxia expert who discovered she had IgG antibodies to gluten (not an allergy). she also had a normal blood test for B12 (which says nothing about the brain). She went on a gluten free diet and we eventually proved her motor skills significantly improved as the antibody levels dropped - warranting a diagnosis of Gluten Ataxia. This is similar to Celiac Disease only the cerebellum is attacked instead of the gut. On average she continued to improved till mid 2007. After that she began to slowly decline again. A blood test showed she was also producing IgG antibodies to a milk protein so she went on a gluten free / dairy free diet. She kept slowly declining till March of 2010 but the milk antibodies had not declined enough to be sure if they were causing the decline or not. She then had a bad reaction to the Parkinson's drug Sinemet and had a series of whipsaw declines and partial improvements in motor skills up to the present. Much of the motor skill decline is may be due to Parkinsonian tremors (this does not mean she has Parkinson's disease).
She had peripheral neuropathy (burning and swelling feet) starting late October 2007 In January 2008 I began giving her a Natural Factors 1mg mB12 sublingual several times a week. I also had her rub L-arginine cream. In February 2008 she switched to Source Naturals 5mg mB12 sublingual several times a week. In July 2009 she began taking a Source Naturals 5mg combined mB12 & adB12 sublingual every day. Prior to July 2009 she was also getting a Nature Made B-complex 2 times a week. The L-arginine cream did reduce the swelling and some of the burning but the supplements didn't seem to have much impact on the burning in her feet. She did not appear to have any significant startup reactions to the mB12, aB12. We started your protocol in September 2010 with the intent of trying to provoke a reaction that might justify going on to subcutaneous injections. She got up to 5 mg mB12 2x/day (morning and evening), adB12 6 mg in the afternoon and 0.8 mg mFolate 3x/day by the end of September. She was also taking most of the recommended supplements including a Jarrow B-Right 2x/day. She then experienced a scary evening of moderate Serotonin Syndrome. After a night of taking vitals which were mildly elevated, it was decided to see her internist in the morning.
Immediately after the Serotonin Syndrome we stopped her SSRI (Celexa ) permanently and everything on your B12 protocol for a some days until her symptoms seemed to be gone. We started back with 5mg mB12 1x/day and added everything back in over the succeeding weeks. By December 2009 we had increased and changed the protocol to 50 mg mB12 1x/night, 51 mg adB12 and 5 mg mFolate 3x/day (this was probably too much mFolate).
At this point her sleep apnea had disappeared and her sense of smell seemed to have somewhat startlingly improved. We had a neurologist visit which covered many things including your B12 protocol. Since the protocol seemed to be effective we discussed moving on to injections. However I did not bring enough information with me to ask for the correct prescription for injections so I said I needed to check into it. Two other drugs were prescribed (an antiviral (acyclovir) and a dopamine agonist(Mirapex)) in that visit to see what effect they would have. We decided to reduce the B12 protocol to about 20% of the high (the number of sublinguals was getting painful) while trying the two other drug therapies for about a month each to see what effect they had. The Mirapex is particularly important because her Parkinsonian symptoms are the most bothersome right now.
Since then her sleep apnea occasionally appears at a very low level and her sense of smell seems to still be improved.
She was on a PPI for much of the last decade. She stopped a few months ago. She also has intestinal absorption problems even if she does not have biopsy proven Celiac Disease. She was low on iron, zinc, calcium etc. In the last 1-2 years those have all been improved with careful diet, supplements and verification with blood tests. Her uric acid has also been falling over the years to well below normal. In MS and other patients serum uric acid is correlated with a leaky blood brain barrier, a poor prognosis and increased levels of the free radical peroxynitrite. I first started giving her zinc every few days because it is a vitamin D cofactor. At her next blood test her uric acid level had jumped to a 4 year high. Since then she is getting 60 mg zinc 1x/day and temporarily 1000mg inosine 1x/day. In less than 5 months her uric acid levels have doubled from slightly below normal to the middle of the normal range. Some MS patients go into remission when their uric acid (and zinc?) levels reach high normal.
In June 2010 she had the following blood tests (among others):
FOLATE,RBC 439 ng/mL >280
FOLATE,SERUM >24.0 ng/mL >5.4
HCT FOR FOLATE 38.1 % 34.0-42.1
HOMOCYSTEINE,TOTAL 8 mcmol/L 5-15
METHYLMALONIC ACID 147 nmol/L 87-318
VITAMIN B12 @ 1754 pg/mL 160-840
I understand these give no indication of the levels in her CSF. She has not had the new B12 test yet either but it would not give information about the level in the CSF either.
Thanks in advance for commenting on this!
CFSbear
Hi CFSbear,
I think that I will use this one of your posts as a basis of response. For starters, tell me more about the severe ataxia. Did it start suddenly? For how long did it get worse and for how long has it been the same?
The only other issue I'll address before having that answer is in regards to the ratio of the adb12, mb12 and methylfolate. The suggested ratios of mb12 to adb12 that I have come across is in the neighborhood of 3x - 10x as much mb12 as adb12. When another person tried precise injections of adb12 and mb12, when he tried the large doses of adb12 mood and personality changes similar to those of mb12-CSF deficiency occurred. In my injection series of adb12 I approached from a titration point of view. The peak effect of adb12 was reached with 1mg of adb12 injected at the same time as 10mg of mb12. I achieve exactly the same effect with 6-9mg of sublingual adb12 taken at time of injection with mb12 10mg SC. I find that I only need 18mg of adb12 about once a week, whether in divided or single dose as long as taken at same time as the mb12 injection to provide the CSF penetrating diffusion gradient. Several people have needed somewhat larger daily doses of adb12, but not larger than the mb12 to maintain an equilibrium state with the adb12. My daughter does best on a single adb12 daily plus the mb12. For my body-adb12 equilibrium, I find about 3mg sublingual once a week maintains my body at an equilibrium with the adb12. However If I don't have the somewhat larger doses times with the injections I can't maintain the equilibrium with the CSF-adb12. 50mgs of sublingual adb12 seems rather excessive and there is no evidence that it does any good at all for ataxia in anything more than a much smaller dose. Also, the timing of the mb12 may be a problem. Morning is usually best for most people because of a delayed generation of melatonin in the evening from mb12 in the morning. An evening dose of mb12 could be causing a melatonin generation at other times of day causing daytime sleepiness.
Also, a few remarks on the 4 equilibriums -
Through a specific titration pattern of mb12, a person who has widespread startup responses can observe their continuation for 1-3 months or so and then a rapid falloff as an equilibrium is reached. Then, after an increase of another 5mg sublingual does nothing and the startup responses have essentially ended, one takes a 3mg sublingual adb12, a new round of milder startup responses occurs affecting energy, muscle pain, muscle deterioration and atrophy, exercise endurance, FMS tender points, non-neurological spasms. The startup symptoms of adb12 typically falloff quickly, usually less than a week when 1 pr 2 sublingual adb12 are taken. This equilibrium is reached quickly because of the specific uses that adb12 is put to and it apparently tends to stay parked in the mitochondria once there unlike the mb12 which is mostly circulating and subject to kidney excretion or collection and excretion by the liver. After this equilibrium is reached it takes about 3 days without mb12 for there to be startup effects from a single 5 star sublingual. No amount of cyanocbl or hydroxycbl appear to reach an equilibrium level of b12 where it is needed in the body as compared to 5 star mb12 or adb12 sublinguals, and many mb12/adb12 deficiency symptoms will cpontinue to worsen no matter how much hycbl or cycbl is taken or what it is taken with. Sufficiency is NEVER reached with them in anybody willing to report the details and do the trial.
I will be watching for your responses.
((. Finally I take 4800mcg of folate along with my b12 shot; is that the right amount to take? Should I take the folate on an empty stomach and wait 30mins before I inject??? Any answers to any of these questions will really be helpful!!!
