Toni Bernhard - How to Respond to Unkind Remarks When You’re Chronically Ill

And 0.8% of what I smear on my lower portions

 

I don't take it for a deficiency ... it helps with my deep muscular/vascular pain.

 

I take it for deficiency and the guidelines are woefully inadequate. Basically if you have signs of neurological damage from being low for too long then the guideline from the British haematological society is that the patient receives injections immediately. A lot of GPs prescribe incorrectly and don't understand the tests etc.

http://onlinelibrary.wiley.com/doi/10.1111/bjh.12959/full

"Treatment of cobalamin deficiency
Current clinical practice within the UK is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form (outlined in the British National Formulary, BNF, http://www.medicinescomplete.com/mc/bnf/current/PHP5867-drugs-used-in-megaloblastic-anaemias.htm). Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for 2 weeks. The BNF advises that patients presenting with neurological symptoms should receive 1000 μg i.m. on alternate days until there is no further improvement. However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternate day therapy after 3 weeks of treatment.

Patients presenting with severe anaemia may develop a transient hypokalaemia following treatment, the clinical significance of which is unknown (Carmel, 1988), and potassium replacement therapy may be considered. In patients presenting with anaemia, a reticulocyte response should be evident by 7–10 d provided the patient has adequate levels of iron and folate. If a haematological response is not achieved the initial diagnosis should be reviewed. A suboptimal response may indicate previously masked iron deficiency or presence of another co-existing cause of anaemia.

Maintenance treatment for patients presenting without neurological deficit is with hydroxocobalamin 1000 μg i.m. every 3 months. Those with initial neurological deficit should receive hydroxocobalamin 1000 μg i.m. every 2 months. No further testing for cobalamin levels is required. Although there is little evidence that more frequent dosing is harmful, specific objective studies demonstrating clinical benefit are absent, and the GWG cannot make specific recommendations."

 

I should also say that I take more than the recommended amount (4mg daily) because I find it helps with cognition. After a year of taking it though my numb hands and feet remain, so probably the damage for the deficiency is already done? Or perhaps it's something else?

My deficiency is probably partly due to the medication I've had to take for a long time which reduces folate B12 biotin etc, although RA, pernicious anaemia and Hashimotos runs in my family. The intrinsic factor test for PA has a low success rate (40-60% I think from memory) so the fact that I scored negative for this is pretty meaningless.

The threshold for deficiency of b12 in serum test is very low in the UK (100 ppm) whereas in Japan and other countries it is much higher (500ppm).

Basically there is very little in the way of clinical trial data and the diagnostic tests are poor and there is poor education amongst GPs with regards to using the guidelines that are in place.

Sounds familiar?

 

I do not have pernicious anemia. I don't know that I test low for B12.

I take it because it improves energy level and cognitive function. I am currently applying it transdermally. I feel better if I do two doses/day, but it is so time consuming and messy that I rarely have time for a second dose. I was hoping that injecting would solve this problem.

I am currently applying 3.8 mg. Tests on animals with a different transdermal solution showed an 80% absorption rate. That would suggest I am getting around 3 mg/day.

 

I keep wishing Toni Bernhard were to write something that touched on the problems with PACE-type research, and how that relates to attitudes to ill-health. It does seem relevant to some of her work, and it would be helpful for helping make another group of people aware of the problems there.

 

I know I could figure it out, but would you tell what your dose is and how often you inject it? I am going to need some ammo when I talk to my doctor's nurse. Even the pharmacy tech at the pharmacy thought this was reasonable. It was in three bottle of 1 mg each that cost over $10 each.

 

My doctor prescribes Sterop brand which is manufactured/distributed in Brussels, Belgium, and my previous pharmacy imported them for us for an extra fee. 3 ampoules of 10mg hydroxocobalamine each, in 2ml liquid. I inject 2 per week intramuscular.

 

A bit late here replying...what to say to a person to whom you've explained your condition over and over ad nauseum, and she says, of course you can drive over to see me; it's only 30 minutes. You can do it if you try.

She's really an ex- friend, prone to bouts of mindreadingness, hostility.

I let her go gently: told her we don't have enough affection between us and that is necessary for being understanding. Also, I said, best of luck to you.