Last loading dose on Monday but my brother said he can't face it, he needs to sleep he feels so ill and much worse than ever. Has anyone felt so very ill, like this, he can barely function and is suffering terribly from the sleep deprivation.
I've read on here that you feel bad to start with but no one has said about the sleep problem and feeling so ill.
A retired Doctor had said that John has subacute degeneration of the spinal cord and not the Multiple sclerosis he was supposed to have and that he has been very badly treated for twenty years....my blood boils. The damage done is going to be permanent but he would of been cured if treated with b12 at the beginning. The lovely doc said that my brother should have the Methylb12 jabs every other day for 3 months etc. Continuing for life on usual regime but as he feels so deathly I can't see the injections happening for a while.
Any advice.
Thanks.
M.
Written by
Marymary7
To view profiles and participate in discussions please or .
So sorry to hear that your brother is finding his treatment difficult to cope with. Martyn Hooper, the chair of the PAS, suffered sub acute degeneration of the spinal cord.
There is a chapter in the book "Could it be b12" about MS and how B12 deficiency can be misdiagnosed as MS.
Some people experience a drop in potassium levels when they start b12 treatment (hypokalaemia).
If you are members of the PAS perhaps they can point you to some useful info. I don't really know what else to say other than I sincerely hope your brother is able to continue with his injections.
I have that book thank you. We are both short of funds, is it worth joining in the hope that M Hooper will advise? I did email but they can't get into ping pong email which I can understand. I'll join if you think they will directly speak with me...I need help from someone. I wish Dr C wasn't retired and that he lived around here. Thanks for the links. I will get some potassium and floradix for John. And say use the magnesium oil he has got.
I do not supplement potassium but eat potassium rich foods eg bananas.
Have you talked to GP about potassium?
I read there can be side effects from taking potassium supplements depending on other health conditions a person can have.
I am not a medic just a person who has struggled to get a diagnosis.
I think the PAS could pass on useful info. They can't give diagnoses as they are not doctors. Members can leave messages on the office phone and someone will get back to them, may take a few days to get an answer. In the past they have intervened on behalf of some people who have not had correct treatment by writing letters.
Some people don't respond well to methylcobalamin. It may be worth trying an unmethylated form to see if that works any better.
Personally I find I sleep better with methyl but we are all individuals and respond differently.
I'd really recommend talking to the doctor who is treating him - looking at exactly what symptoms he is experiencing at the moment. Some may be temporary - a lot more pain tends to be very common which could disrupt sleep but it may be that there are other things going on - particularly if he was also anaemic or has other conditions.
Thank you. If you see my other posts the doctor was vile and we have since read the notes on line and I could shout at that ignorant vile doctor neglecting my brother who feels at deaths door. It wasn't much better with other doctors in the practice, I honestly think this is going to end up as a malpractice case if John doesn't pick up.
He has had hydroxi jabs. Doctor C said the b12 is flooding my brothers brain and the byproducts are making him ill, homosytsine I think.
Is your brother receiving methyl as stated in the post or hydroxo as in your response or are you saying that he was having hydroxo but is now on methyl?
I did mean to say the retired doctor that you spoke to rather than the GP who mistreated your brother. Is this Dr C?
Johns doc has him on Hydroxy one. Retired brilliant Dr. C said to SI with Methyl every other day after loading, last one due on Monday. I can't see John agreeing to any jabs as they are making him worse after an initial improvement.
okay - just twigged that you are probably talking about Dr Chandy and B12d.org. Have you been back to him about the problems J is having. I presume the GP only did minimal loading doses with hydroxo and now has him on maintenance doses of ever 2/3 months - would be useful to know which - may be in past post but ... if the hydroxo didn't cause the same sort of reaction as the methyl is causing then I would personally recommend going back to hydroxo but continuing with maintenance regime of every other day - but back to recommending that you contact Dr C again
Doctor C said the b12 is flooding my brothers brain and the byproducts are making him ill, homosytsine I think.
I think there may be some misunderstanding here somewhere. Homocysteine levels rise when somebody is B12 deficient. Taking B12 (of any form) will reduce homocysteine levels, not raise them.
I've seen more than one person state that starting B12 supplements will 'release' homocysteine, thus causing many of the bad effects some of us feel when we start supplements. I've no idea what the source of this is - but it's wrong.
I'm one of those people that felt terrible after a single methylcobalamin jab. So bad that I gave away the rest of the package.
Hi, so sorry that your brother is feeling so ill. I only got as far as the third injection with my starter doses and felt so ill also that I had to stop, I, like him felt like I was going to die. My b12 was 85 so very low. I have since tried sublinguals and the boost spray and now can't seem to even multivitamins without feeling terribly ill. Neither my doctor nor myself have any idea what to do. I have posted on here before with my problem and I don't think we are alone in what is happening to us. Can I just stress that it don't just feel ill I really feel if I take any more it would kill me. I have quite a few neurological problems now, all in the space of 3 months and cannot work so if anybody out there has any ideas on which way for people like us to go to for help it would be so appreciated.
I'm sorry you feel so bad I know how horrible it is and the fight to get better is just not helping some people. What we need is a complete intergrative health care with nutritionists expert doctors and alternative practitioners.
Hello KathyN. Like Ndodge, I also remember you and your post. Your B12 is very very low so it's no wonder that you feel so ill and have neurological problems.
Your body cannot function without B12 and your GP should be actively looking for answers to help you. He / she needs to find a way to get B12 into you!
Perhaps he could give the PAS a ring for advice? Doctors do ring Martyn, on occasion (if they're interested enough). If your GP agrees to ring, it might be a good idea to ring Martyn first to go through your issues with him so he'll be 'primed' for the call.
Or your GP could refer you to either of the two consultants who deal with treating those who are sensitive to B12 (their details are on the PAS website). Think I may have mentioned this before, so excuse me if I'm repeating myself.
Also - with those neurological problems you need an urgent referral to a neurologist. Has your GP done this?
Sorry to bang on about this but I'm cross on your behalf. Your GP needs to stop the head scratching and find a solution PDQ.
Have you tried talking to Martyn - he may be able to offer further suggestions. But I know what he'll say - you need B12 (but you know that, I think).
I know that it's really difficult dealing with GP's when you feel so ill - have you printed off any of the information in the pinned posts (on the right hand side of the home page) to take to your GP. One of them gives a clear diagnostic and treatment path so your GP should not be lost for ways to find help for you.
I think a good place to start would be the consultants who deal with B12 allergy issues. The PAS information contains email addresses - perhaps you or you GP could email one of them? Or even give them a ring. They would certainly be able to advise on ways to try and get B12 into you body. Why not give this a try first thing on Monday? Please, please do not just sit and wait 😀.
There are ways of delivering B12 to those who are sensitive to it. I seem to recall someone once saying, a while ago, that they have to have the B12 IV, along with a drug (can't remember what) to calm and control the reaction (done in hospital every time they have the B12). Might be worth asking your GP to also investigate this.
As I've said before, if I come across anything that may help, I'll let you know.
I wish there was something I could offer, other than a few words.
Hi Marymary7. When I had my loading doses of Hydroxocobalamin I also suffered from insomnia (it's listed as a possible side effect in the patient information leaflet). So it's possible that this may be a side effect - but not certain as there are other reasons for suffering insomnia.
Like Gambit62, I also had much better sleeping patterns when I added methylcobalamin to my B12 regime. In fact, I had undisturbed sleep for the first time in years!
So it might be worth swopping to the methylcobalamin to see if there's any improvement...from what you have said before, and what you say above, it sounds as if your brother needs to continue with alternate days of B12...especially as the initial indications were that he felt some improvement (if I recall correctly?).
Did you manage to get the community nurse to go to his house and give him the injections - ridiculous to expect him to go to the surgery in his current situation. Or perhaps he'd let you or another family member do the jabs for him? It's very easy and there's lots of advice here if you decide to go down that route.
No idea about the byproducts flooding your brother's brain...perhaps others may comment.
I remember your previous posts and the terrible trouble you are having with your brother's GP.
Seriously suggest that you change his GP if this is at all possible.
And have you thought about going back to see a nuerologist to query the MS diagnosis. Another MRI scan perhaps? Might also be a route to getting him better treatment. I know how difficult it is to challenge the medical profession so I send you both virtual packages of strength 😀.
Sorry I can't offer anything but a few words and really hope that things begin to improve for you both very soon.
Thanks for helping. We can't go back to that GP and even others there have written things about John when we looked at records online. They tried to give him antidepressants when he was already on his knees....the list goes on ......I despair of that surgery.
I'm hoping to get John onto the methyl which we have thanks to a very kind member giving us some. I have to screw up courage to do it and he has to hope it doesn't make him as bad as now. Yes the start of loading he was stronger and went out.....it's the not sleeping I think. He said it's like having flu and feeling like death.
John would need the GP to refer to the neuro and says he's had lots of MRA's , they say result - ms, but others say ( retired Dr C ) as only spine lesions could be Subacute degenerative spinal thing and his b12 was so low and untreated. That's what I thought but the vile GP lost all patience with me and I thought he would explode. He wrote in capitals that the consultation was exasperating etc. I can see from notes that John asked for b12 tests for years which I told him to ask for, the snide comments are sickening to read and practically mock J as if he is clutching at straws.
Dr. C said that John had to fight through this difficult stage.
I will try to get all the supplements and get him to take them.
Is he also taking folic acid potassium and magnesium, these are needed to help the B12 work but can drop when having B12 injections which can also make you feel ill. The injections can also affect iron levels. Hope he starts to I,prove soon.
Taking folic acid again, it was prescribed before, I got him magnesium spray for his restless legs but he's not keen so doubt he's using and potassium was raised to me and I think I should get him that and maybe some floradix iron but he is resistant to taking things and says he doesn't like it and it makes him bunged up but that has been improved as his intestines seem to be working fast for once.
Spatone is a gentle iron supplement. Potassium should come from food as it can be dangerous if you have too much. If you are on Facebook there are a couple of really good support groups with lots of information.
I have nothing to offer in the way of a suggestion, but I sincerely hope the b12, maybe methyl, will make a positive difference. So sorry your brother (and you) are suffering in this way.
Please let us know if the methyl helps, if you decide to try it, that is.
Mary, I'm relatively new to the PAS part of the forum but not to Healthunlocked. I am so upset to read this post, I could weep for you and your brother.
I'm not going to advise on the B12 - there are people on here with far more experience than I, and I am still part-way into my self-injected loading doses (long story, irrelevant to you).
There are a couple of things I would like to offer, though. Have you ever heard of Low Dose Naltrexone? I don't wish to add new information, if it is so, and even more to think about into your equation, but if you haven't heard of it, and you have some head space to have a quick look, do Google it and see what you think. If you have any questions you want to ask, feel free. If you don't think it relevant, ignore it with my blessing.
The other thing i want to ask is what country are you in? You say a retired doctor diagnosed spinal lesions as a result of low B12 - was this Dr C? Can you get that diagnosis verified? The reason I ask is that you may well have a case of malpractice and it might be an idea at some point to get some initial legal advice.
I'm willing love and healing over the ethers to you and your brother. x
Thanks for your good wishes and taking the trouble. Yes I have read all about Low dose naltrexone and John had tried it by private prescription for four months or more, at first he thought it gave him more energy but it was wishful thinking and he has finished up the last if it.
I read everything I can in a desparate bid to help. Dr. C is off the record, he is the top most expert in this and we had a phone chat. Without a decent GP in the practice it's so hard. I think they are all ruled by the one we saw last who was obnoxious. Yes we are in the UK which you would think would be modern and up to speed with all this.
I hope you have the answer to your health problem.
M, I'm really not trying to push LDN, but 4-6 months is nothing. It needs to be taken for at least 18 months to even begin to nibble at the horrendous damage inflicted by John's illness, so don't give up on it. In addition, newer information states that the dose can be raised to 20mg per day, as needed. It doesn't interfere with any other medication, there are no contraindications other than the taking of opiate pain killers so it's worth just keeping on it. And he needs to take high doses of vitamin D3 as well as vitamin K2 (as Mk7) to aid the action of the drug.
If John thought it helped him at first, it did, but the initial upsurge can be so short and sharp before the real repair sets in when there seems to be a relapse that you can think it's not working. That he felt better for a bit is no coincidence and it is doubtful that it is a placebo effect, otherwise it would have been maintained. The damage is simply too great to be addressed in so short a space of time.
Hi, I'm so sorry to read about what your brother is going through. It's great the Dr C has been able to give you some advice, but as to your (potentially negligent ) brother's GP, is it possible to change to another practice? To have an understanding GP could make all the difference in gaining access to other treatments. I wish you both all the best.
Marymary7: my 23 year old daughter has suffered similarly. The doctor kept giving her B12 injections once a month for her pernicious anemia and then kept commenting that her level was not coming up. This went on for years. In April she stopped sleeping and eating and I knew something was really wrong. After many nights of googling and fights with doctors she received a week of loading doses and started taking sublingual B12 methyl cobalamin, methyfolate and B6. It took about a month but she is starting to get her life back! She is sleeping and happy again. You have to give it time to work but it does. Hang in there
This is my first post, although I have been slowly grasping information from all these wonderful minds in the PAS over the past six months.
My story is redundant, so not worth your time now. Only want to say I am feeling A LOT better after months of repetitive bloodwork, a positive IF antibody test, followed by an equivocal test and so much more.
I'm in Texas, and Dr's here prescribe Cyancobalimin (not available in UK, thank goodness) - it's synthetic and has adverse reactions for most. Hydroxocobalimin, on the other hand, can be methylated and absorbed in the purest form - Methylcobalimin, but not if you have one or more MTHFR gene mutations. I would highly recommend logging on to 23andme to order a human genome testing kit. Yes, it's expensive ($199) - but provides invaluable information for methylation pathways as well as connections with haploig groups that will open a crazy new work if ancestry information if you are interested. You don't have to participate in the ancestry area, but some find it beneficial and fun.
The raw data you'll receive is about the same as me trying to speak Japanese. The next step is to upload to Seeking Health Institute where for $45 StrateGene processsd data and sends a report showing gene mutations - very important in understanding methyl pathways.
Every individual will have different SNP's (gene mutations) that prevent absorption from nutrients. Also supplements/foods/histamines +++ that are helpful or harmful. Most understanding how the importance of living with less stress, better sleep, optimal nutrition, excercise and generally enjoying the body God gave us. The best way to get there is to understand what is causing you harm, eliminate those as much as possible and discover individual methyl pathways that are the foundation for wellness.
I'm attaching a UTube where Dr Ben Lynch explains the huge difference between folic acid and methyl-folate. If u don't care to view it, the Cliff Note version is that Folic Acid is not the same, it takes a LONNNNG time to convert into methyl folate. In the meantime extra folic acid builds up in the body causing adverse reactions. There are alarming links to the significant rise in autism showing that Folic Acid given in high doses to pregnant and nursing mothers could very well be the cause. (All testing for folic acid was performed on rats. They quickly transform Folic Acid into methyl folate, the majority of humans do not, especially if you have one or more MTHFR mutations. I have 1 heterozygous Folate SNP - MTHFD1,m. And 2 MTRR (Methionine SNPs) MTRR A66G, (heterozygous) and MTR C524T (homozygous).
One additional comment: I have 3 healthy grown children. I was prescribed the usual prenatal high folic acid vitamins. Each time I began taking them I felt weak, very flu-like and had unusual muscle aches/headaches. My Dr was smart enough to know these side effects were a red flag. Instead I took B vitamins, C, D, selenium, magnesium, potassium, low dose iron. ✔️✔️✔️ - three healthy babies that might have been jeaoardized by potentially harmful e high doses of synthetic folic acid found in pre-natal vitamins.
Here's the link to understanding Folic Acid vs Methly Folate.
Hang in there, I hope I didn't make an already difficult situation more confusing. I'm certainly not a Dr., and genome testing results are baffling without a really good Dr to interpret.
The body needs two forms of 'methylated' B12 - methylcobalamin and adenosylcobalamin. There are some repeorted cases of people who have problems converting methyl to adenosyl so hydroxo would certainly be better for them.
The evidence seems to be that although MTHFR affects your ability to methylate B12 it predominantly affects methylating folic acid. In the case of B12 higher does of hydroxo will get over the methylation issue. Please see this information in the pinned posts
Cyanocobalamin can be as effective as hydroxocobalamin. it should not be used by anyone who has a sensitivity to the cyanide molecule eg lebers syndrome (where cyano can cause blindness, but hydroxo won't). Some people find it more effective than hydroxo. On average people retain hydroxo in the blood twice as long as cyano but there are significant numbers of people for whom the opposite is true and they retain cyano longer than hydroxo. The big disadvantage for hydroxo in the UK is that this fact has been used to justify very long periods for standard treatment and loading doses so these will be given monthly in the US with cyano but only every 3 months (2 months if neurological problems, and GP has the nous to spot the difference).
And cyano is available in the UK and occassionally used where there appears to be a sensitivity to hydroxo - we have one UK member who has been on cyano for over 45 years, clivealive .
betwelve thank you for all this v interesting research, I have a lot to investigate. From just the film I see that Folic acid causes the insomnia ....so that has been making my brothers sleep even More of a problem. Until I can learn more I think he needs to eat more leafy greens.
Thanks for taking the time to tell me all of that. Will investigate.
I sleep for 5 days straight when I get an injection of Mcb after being without it for several months. Im without it for so long only because i cannot access It & Dr wont run Schillings test for diagnoses.
Thank you Lif3sav and Gambit62 my brothers sleep is so much better now. He is having Methylcobalamin jabs twice a week and Methyfolate drops and is much happier although sadly now mostly in a wheelchair.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
New doctor, old ignorance
please help 
Badly treated B12D(/PA?), can heart attack risk increase??
