Going backwards

[eloquentladybug]

I was diagnosed with PA about 22 years ago. I think my reading was 75 at the time. I was very weak and could barely function at all. I live in the States. Actually I found my symptoms in a Merk manual and asked my doctor for a B12 test. He was angry at me for suggesting it but it turned out that was the problem. After about 4 doctors I lucked out upon a doctor that taught me how to do the injections at home and when I reported that I got terrible symptoms if I went a day without an injection. He said, "Well, you know your body" and prescribed daily injections for me for years and years. I improved greatly in some areas and not so much in others so I accrued permanent damage in regards to some symptoms. Then my doctor said my B12 test showed too high and wouldn't prescribe any more B12 for me. I tested at 1500. I tried sublingual. The shots were 1000. The sublingual was 5000. I daily let the sublingual soak into the tissues under my tongue for 20 minutes and it was working as well as the injections did and so I went on for years and years. I wonder if anyone else has experienced this: Once when I was taking injections they sent me a different brand and it didn't work. It was hard to convince them of that but they did switch back to the original company they used and then I was okay. So I improved on the injections and I was maintaining and improving in some ways on the sublingual B12 then I noticed the consistency of the sublingual changed from a syrup to a watery consistency and it didn't work. I tried other brands...don't work and I have been plunged into a nightmare. One brand works a bit better than the others but I'm going backward instead of maintaining or going forward. I am experiencing many symptoms I remember from before I was diagnosed and treated. Been to two doctors so far. I test now at 2000. They insist I don't need B12. I try to tell them about active and inactive. I try to tell them about the new information coming out on B12 deficiency as per Dr. Chandry's clinical studies and his book which he would send to them for free. They don't want to hear anything about it. It is hard for me to go around to Doctors. One of my permanent symptom is weakness and lack of stamina. I use up three days of my energy store to go to a Doctor's appointment. If I sound desperate. I'm sorry. I'm feeling quite desperate. Thank God for this Website. Latest bloodwork is everything looks pretty okay except I am 187 LDL was is way to high. So the Doctor insists it's the high cholesterol that is causing my legs in increasingly go numb and my lack of balance but these are the distinct symptoms that I've had because of B12 deficiency and it seems to me prudent to try injections first. I do have high LDL and I will work on it but the doctor won't even consider that I might had high LDL AND B12 deficiency. Besides I never heard of these symptoms for high cholesteral. Would appreciate any information, help or advice. Are there any specific articles about testing high for B12 in the blood but not really getting into the cells of the body where it is needed that I can show these doctors? Thanks for being here.

[fbirder]

"Dr. Chandry's clinical studies"

He hasn't done any,

[eloquentladybug in reply to fbirder]

Oh, thanks for your reply. I thought I read that he did. He was investigated in England, right? The toxicity thing and they found nothing to prove it and I know that he said it was good that he took meticulous notes but I thought somewhere in there it said clinical trials. Oh well.

[fbirder in reply to eloquentladybug]

He used to prescribe B12 for everything. He even told one person on here that he didn't have MS, but a B12 deficiency - based on a phone chat. In the end the General Medical Council banned him from prescribing B12 or steroids (another of his favourites) for fastigue. He was also banned from carrying out any private work outside the NHS or from practicing outside his firm.

He claims to have made loads of discoveries about B12 but has never published anything. Which means he has done no clinical trials. All he has done is prescribe B12 to everybody - and claimed great success when it worked in a small fraction.

[eloquentladybug in reply to fbirder]

I thought he wrote a book that you can buy and he will send to Doctors for free. Oh, there's a difference between being 'published' and writing a book. That is a letdown. I thought that I could cite him to Doctors as this expert. Thinking of him as my ace in the hole so to speak. Back to the drawing board

[eloquentladybug in reply to eloquentladybug]

Who is our champion if not Chandry? We have no champion?

[eloquentladybug in reply to fbirder]

Who is our champion if not Chandry? We have no champion?

[fbirder in reply to eloquentladybug]

I don't think we need to look far for a champion.

Martyn Hooper MBE. Chair of the Pernicious Anaemia Society, works alongside top researchers in the field, co-author of at least two published papers, author of three books on the topic including the best I've read - What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency. I gave my GP a copy of this book, and he said he was surprised at how little he knew. He then passed it around his colleagues in the practice.

Martyn tries to work with the medical profession. It is thanks to him that NICE have decided that they need to write proper guidelines on B12 deficiency.

His Blog - martynhooper.com/about/

The Book - amazon.co.uk/About-Pernicio...

PAS and NICE - pernicious-anaemia-society....

[eloquentladybug in reply to fbirder]

Thanks again fbirder

[eloquentladybug in reply to fbirder]

):

[Nackapan]

Sounds awful. You know your body Your levels will be high theh are meant to be.

Get help from PAS if you can.

List your b12 deficiency symptoms write to your doctor saying yoh cannot function without b12 treatment.

With a PA diagnosis injections are for life.

I've never heard of high cholesterol causing thises symptoms.

You csnt exercises without b12 to help your cholesterol levels to come down.

Was your folate checked vit D iron.

Hope your doctor sees sense

[eloquentladybug in reply to Nackapan]

Thanks for your reply. My iron, folate were good. Vitamin D was a little low. I have doubled up on my daily Vit D. Yes, I do think this is the place to get help. Lots of knowledgeable people here

[Hidden]

Numb legs are a classic sign of high cholesterol as is tingling. I’m not a doctor but it sounds like his suggestion has some merit and if it’d were me for all sorts of reasons I would not want high cholesterol and round want to bring it down.

[eloquentladybug in reply to Hidden]

Thank you for your answer. I didn't know it was a classic sign of high cholesterol. The LDL kind I assume. I amlearning about how to get it down. My LDL was 187. which I guess is very high. Strange cause I am careful to eat healthy. There is still more I can do I suppose

[Leils]

Sorry to hear you aren't getting the help you need.

Are you able to order supplies to self treat again? That might be your best option

Regarding cholesterol. Numerous studies have shown people with high cholesterol actually live longer so try and avoid statins if you can.

Did they check your vitamin D?

Very interesting to hear that sublinguals helped you almost as much as injections. Something I'm hoping to try possibly in the future as I was only diagnosed in 2019.

[Bellabab in reply to Leils]

I agree - the statin usage is highly suspect and I refuse to take them. If there is also diabetic type two diagnosis the use of statins may well mean its difficult to reverse the diabetic type two by losing the tyre around the waist that has worked for hundreds of people.

[eloquentladybug in reply to Bellabab]

Yes, I would avoid taking statins or any drug unless I have just tried everything I could reasonably try in terms of diet and lifestyle first

[eloquentladybug in reply to Leils]

Yes the sublinqual worked for me as well as the injections but I didn't use it like directed. I think it says keep under tongue for 30 seconds or so. I kept it under my tongue once a day for 20 minutes until it was all soaked in. I would apply it under the tongue and then do stuff on the computer cause you have to keep your head up. Just a little tip *wink* Vitamin D was a little low. Easy to correct. I take twice the amt. daily now. But it seems they have changed the formula and it's watery and stopped working for me. But the quality of alot of things has gone down lately. Have you noticed? Or is it just America? I would be quite willing to self treat and I will look into it but I think I can assume buying enough to daily inject is going to be beyond my ability to pay. I am barely making it now.

[Leils]

There are papers showing functional B12 deficiency if you google it and an MMA test may be something you could try...

[eloquentladybug in reply to Leils]

Hi Leils. I read about the MMA test and I asked her, the doctor I am speaking of, to please give me that test as it is just a urine test and will test B12 in the cells where it does the work B12 is supposed to do as opposed to the blood test which shows a high level but could be inactive and not doing any good. She wasn't interested.