Curious, recovery timeline

[Ctadds1]

Hello all

I hope everyone is doing well

I have a quick question that I am curious about. I am wondering how long have you been receiving treatment, how often are you receiving treatment, and if you have made a full recovery or still suffer from symptoms.

I am a 37yo female who was diagnosed B12 defiencient in June of 2020 (level of 142). No official PA diagnosis (negative test result even tho we all know the test is unreliable). I have injected at different frequencies along my journey but currently doing weekly. It’s been a slow climb with many many peaks and valleys. Sometimes I think B12 has been the answer to it all and sometimes I think something else may still be wrong with me. I’ve been tested for many things (mri, heart ultrasound, thyroid, vitamin deficiencies, Lymes) all coming back normal. In the past 3 months I have had a baby and contracted Covid which has put me into a serious regression. Lots of symptoms that I have not had in some time (balance, internal vibrations, headaches, achy weak muscles, fatigue, short of breath, ringing ears, trouble swallowing ). Every regression makes me wonder if something other than B12 is to blame. I start to question everything and question whether or not to seek out a medical professional and start digging further. I do not like doctors and have lost most my faith in them. All they do it try to give me anti depressants or anxiety meds. Mind you I am not depressed or anxious.

I’m just really wondering if it’s ok to still have symptoms 2 years into my treatment. I know my body has been through a lot recently and I’m sure that is a contributing factor but it scares me to think it may take me years to recover again.

As always thank you for the wisdom and kind words

[Ally2022]

Hi there, are you based in Aus, I had the same thing happen to me, for me 2 weeks post birth with my baby is when my symptoms went nuts, am still struggling to get proper help here from doctors and am looking into SI now

[Ctadds1 in reply to Ally2022]

I’m in the US. I have a pretty good doc who prescribes me B12 every other week and I get them in my own the opposite weeks. I had my baby at the end of March and it’s been tough bouncing back

[Nackapan]

Firstly congratulations!! Having a baby naturally depletes your b12 .

Having covid will put your body under further strain.

Increase your b12 regime for a period and supplement with the post natal vitamins.

What you have said all very familiar .

I'm older but one of my daughters 31 and suffers the rollercoaster

You will improve again.

Stay calm.

Enjoy your baby .

Rest and accept any help available.

Tc

[jade_s]

Congratulations!

Yes absolutely can be a b12d flareup as others already said. With neuro symptoms you might be better off going on daily with cyano or every other day with hydroxo. Some of us also need more than 400 mcg folic acid. I take 5mg folic acid daily and still need to inject 2x day, 6 years on!

[Pickle500]

I think it can help to try to get to the bottom of why you had a deficiency, although hard.

I started out assuming it was dietary, since I'd had many years of low meat intake. Like, red meat once a week and otherwise fish and the odd bit of chicken.

I also didn't show as having a PA related issue.

But I've since begun to realise that my symptoms could not correlate with dietary deficiency. My problems started with stomach/abdominal pain and a trip to the GP who sent me for a colonoscopy, which removed polyps. Then they found a thyroid nodule and other issues before I realised that alcohol seemed to give me a strange reaction. Then they diagnosed 'stress' and offered to sign me off the job I'd already left.

I now very strongly suspect I have an absoprtion issue in my gut, potentially dysbiosis. I think this may have started with heavy boozing in my twenties, but the trigger was a year of major work-related stress.

All that aside, I believe I do have a non-PA related absorption issue in my gut. And that would suggest that many other nutrients have not been absorbed very well over time either.

My symptoms were major neurological and neurospychiatric - quite alarming. And during my treatment I took sublingual methyl and adeno, which definitely worked and accelerated my progress. I continued on sublingual and still do today, over 1 year on.

I wonder if you can get to the bottom of your deficiency. Then perhaps it may reveal that you could have gut related issues that need to be treated. Or your diet needs to change, perhaps.

Also, you may have other B vitmain deficiencies like Thiamine (B1), B6 or B9 (Folate). Especially if you have internal tremors (I have those too but are slowly regressing with daily massive intake of sublinguals).

Try sublingual doses, 5 per day and not before 3pm.

[Nackapan in reply to Pickle500]

So you are absorbing the sublingual b12 .Do you have injections as well as sn absorption issue?

Glad you making progress

[Pickle500 in reply to Nackapan]

I inject weekly, SI. I wonder if Im one of those lucky few where the B12 molecule actually works under the tongue.

Thank you

[Nackapan in reply to Pickle500]

I tried but when my sublingual s ran out felt no difference.

Glad they are helping you

[Ctadds1]

Thank you so much for the response!! I did have a stool test done and it flagged disbiosis! I failed to mention this in my post. Doc told me to up my probiotic intake and that’s all that was said. My folate and B6 come back sky high but B1 was low so I supplement that along with sublingual B12 and injections. I too believe I have some kind of absorption issue.

[Nackapan in reply to Ctadds1]

Yes it sounds lijd you need to Increaee your injections at this time.

[Pickle500 in reply to Ctadds1]

I have found that rolled oats can settle my tummy upsets, taken everyday.

I do also think that sleep plays a major role. So I hope your little one isn't torturing you too much on that front!

[Sunshine1932]

Very quick response.

I have never had a baby or Covid

But I was diagnosed 2018 and my B12 was 142.

Had all the same tests as you

Never been told I had PA but given information as if I did have it.

Soon to have the MRI on my brain for MS

I was self injecting randomly and it wasn't until I started every other day that I seen progression.

I had a lot of nerve pain and still do to the point a needle in my right leg was so painful but now it has eased.

I have what I call flare ups and generally I have them when

I do too much

Lack self care

Eat rubbish food

Or have a lot of stress in my life.

I'm a great believer that medicine or B12 is only half the treatment. I still believe we have to take care of ourselves. Do I always take care of myself? Of course not as life takes over but the more flare ups I have the more painful it gets, so the more I try to look after myself.

The only other deficiency I have is low ferritin but I'm working on that.

I take a daily multivitamin

Daily B Complex

Daily Magnesium

All my vitamins are plant based so no synthetic. I get them from together vitamins.

Today I am ordering liquid Silica.

My final words would be to get support from GPs as we do, fellow members like here but most importantly

Listen or ask what your body needs.

Our body was looking after itself long before doctors and nurses came along.

Much love and congrats on your baby.

[CG12345]

If it’s gut dysbiosis it may very well take more than just adding probiotics. Usually you need to start by healing the gut lining/leaky gut (if you have it) and then taking specific probiotics than can help target specific issues. If you can afford to it’s worth finding a good functional doctor / practioner who is knowledgable on the gut to guide you through it.

If not, Dr Will Cole (and his website) is a foundation of knowledge and a good starting point.

[Brainfoglady]

I think it take years to heal the nerve damage from b12 deficiency. Plus every time you get a bug or are under stress the symptoms return with a vengeance. Am 3 years in now and although my brain and body have improved I'm a shadow of my former self. You have been though carrying and having a baby plus covid. Maybe you need more frequent injections. I have managed (after a fight) to get one every three weeks. Have also found that. methlcobalamin (b12) oral spray, and a supplement called liposomal glutathione (which helps with energy production in the cells) helps quite a bit. It's expensive but for me worth it. I use B-complete oral spray available on amazon which contains all the B vitamins. Arm yourself with all the information from the knowledgeable folk on this site. Good luck, hope you get some relief soon.