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Crashing after B12 Injections, lost weight that I can't regain

Messages
11
Please bear with me. My cognitive ability isn't the greatest.

I'll try to provide some background info on me. I'm a 22 year old male who has had Lyme disease for about ten years. My chief complaints were always brain fog, eating makes me sick, fatigue, and depression. The good news is that the depression and eating sickness went away after IV antibiotic therapy. I was put on high doses of methylb12 injections and 7.5mg of deplin. I'm guessing that's what got rid of the depression. The bad news is that I'm overall worse off now. I've had autonomic neuropathy for about a year. I have more fatigue now and a lot less motivation. I have anxiety and sound sensitivity that makes me isolate myself. My overall cognitive ability is somewhat worse. The first half of the day is almost useless hours because that's when my symptoms are worst.

My LLMD put me on 5ml of hydroxob12 twice a week, and 1000mg of ALCAR after getting my 23andme results back. I've done the injections for 2-3 weeks. I experienced some "positive nerve pain" at first, but that went away quickly. The b12 makes me feel more relaxed at first, and I can think more clearly. But then the proceeding days my symptoms get worse and worse. I get join pain, cold feet, itching, malaise, and old symptoms come back. From what I've read this is because I'm depleted folate and other things?

I'm at a weight of 117 lbs at 6', and I've been unable to gain weight. I've had increased appetite and have been eating more then when I weighed 125 lbs. Could the weightloss be related? Should I stop B12? Should I be using Methyl B12?

Here are the supplements I am currently taking: CoQ10 400mg, D3 5000 ui, B-1 100mg, Niacin 50mg, Chelated Magnesium 200mg, Potassium Gluconate 595mg, ALCAR 1000mg, 5ml of hydroxob12 twice a week, burbur/parsley drops, magnesium oil

I know I'm missing relevant information. Typing this out took a lot of effort, and I feel burnt out. If you ask for "x" info or details, I can give it. I'm going to try to add additional information when I'm able to.
 
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Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Please bear with me. My cognitive ability isn't the greatest.

I'll try to provide some background info on me. I'm a 22 year old male who has had Lyme disease for about ten years. My chief complaints were always brain fog, eating makes me sick, fatigue, and depression. The good news is that the depression and eating sickness went away after IV antibiotic therapy. I was put on high doses of methylb12 injections and 7.5mg of deplin. I'm guessing that's what got rid of the depression. The bad news is that I'm overall worse off now. I've had autonomic neuropathy for about a year. I have more fatigue now and a lot less motivation. I have anxiety and sound sensitivity that makes me isolate myself. My overall cognitive ability is somewhat worse. The first half of the day is almost useless hours because that's when my symptoms are worst.

My LLMD put me on 5ml of hydroxob12 twice a week, and 1000mg of ALCAR after getting my 23andme results back. I've done the injections for 2-3 weeks. I experienced some "positive nerve pain" at first, but that went away quickly. The b12 makes me feel more relaxed at first, and I can think more clearly. But then the proceeding days my symptoms get worse and worse. I get join pain, cold feet, itching, malaise, and old symptoms come back. From what I've read this is because I'm depleted folate and other things?

I'm at a weight of 117 lbs at 6', and I've been unable to gain weight. I've had increased appetite and have been eating more then when I weighed 125 lbs. Could the weightloss be related? Should I stop B12? Should I be using Methyl B12?

Here are the supplements I am currently taking: CoQ10 400mg, D3 5000 ui, B-1 100mg, Niacin 50mg, Chelated Magnesium 200mg, Potassium Gluconate 595mg, ALCAR 1000mg, 5ml of hydroxob12 twice a week, burbur/parsley drops, magnesium oil

I know I'm missing relevant information. Typing this out took a lot of effort, and I feel burnt out. If you ask for "x" info or details, I can give it. I'm going to try to add additional information when I'm able to.


How much was your average weight before getting sick? How quick did you drop down to 125?Are you getting enough of the other b vitamins? Doesn't have to be a lot but for one you definitely need b2 as that will be severely deficient if you weren't supplementing it. I would also never use any form of b6 besides P5P and never above 10 mg if I were you. You are taking plenty of folate with that high of dose of deplin, do not think that is the issue. Have a look in my sig for some methylation support ideas. Have you been tested for Pyruloria? Lyme can often times cause this as well. How is the blood work any abnormalities there? It could be something like anemia or parasites. Eat gluten or Dairy? Whats a daily recorded food log look like to you? I have a large background in fitness and nutrition, though being sick now exercise is kind of a joke. :(

What are you using to treat the lyme as of now? There are other things I want to say and possible stuff to look into but this is a good enough start for now.

p.s. You should also watch your potassium intake, try and take a powdered supplement form and get plenty through the diet, methylation will rapidly deplete potassium reserves, talk to your doctor first before trying any new regime though. The RDV is 4000mg which no one ever usually gets on normal western diets.
 
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Messages
11
How much was your average weight before getting sick?How quick did you drop down to 125?

I weighed about 140 lbs before getting sick. That was about ten years ago though. It didn't happen overnight. It happened very gradually.

Are you getting enough of the other b vitamins? Doesn't have to be a lot but for one you definitely need b2 as that will be severely deficient if you weren't supplementing it.

I'm not sure if I am.

You are taking plenty of folate with that high of dose of deplin,

I'm not currently taking deplin or methylb12 injections. It's been over a year since I stopped taking those.

Have you been tested for Pyruloria?

From the description of it and the symptoms of it, it doesn't seem like something I have.

Eat gluten or Dairy?

I eat some dairy, no gluten.

Whats a daily recorded food log look like to you?

I'm going to work on a food log today.

What are you using to treat the lyme as of now?

A one week antibiotic regimen every two weeks.
 
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Messages
11
What should I do if I think I'm folate deficient? I feel like continuing to take b12 is just making me worse. I want to say the weight loss started at around the time I started the hydroxyb12. I'm switching over to 1000 mcg methyl b-12 sublinguals. Does a conservative dose of metafolin have the potential to make things worse?

I think I might have anemia. When I took my b12 today I started getting chest pain. I've already been experiencing very low energy, and light headedness.
 
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Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Ok well sometimes de tox can cause symptoms from folate and b12, however since you are only taking b12 alone then you definitely probably caused some amount of folate deficiency now, and that b12 doesn't really go to much use without being alongside some folate, they are dependent on each other for absorption. Some people feel better with higher doses of folate, and some with lower. It really depends on you I cannot say. Personally I am surprised you were able to handle those high doses over a year ago with no issues. I mean it sounds like you had de tox but I also have lyme and when I tried to bump doses that high, literally every time I would get a reaction as if I was taking speed and need to cut way back and use a bunch of niacin to get to a normal state again. Many other people with lyme told me similar or read about others with same issues, some here too. In that sense I guess you are lucky that you can tolerate it more without episodes of feeling doped up on amphetamines or something lol. .

If you have an LLMD that you are seeing now he should be doing blood work on you every so often right? Also I would maybe try and get on some herbs to take alongside your current treatment cause it can help alot, targetting more co infections, getting the cyst forms of the bacteria and over all making the abx more effective. Stephen Buhner of Healinglyme.com has a bunch of protocols and few books you can use for guidance, the herbs he suggests do not negatively react with antibiotics like others you would not want to take with it. Having a food log would help me personally as a nutrition backgrounded person to see whats going on with your weight loss, at least from the aspect of diet habits. So to re iterate as of now you are only taking hydroxyb12 then? You definitely need to get on methyl folate to take alongside it, maybe talk with your doctor to find a dose that would work best for you or get back on your old doses, since they weren't too problematic in terms of reactions. I might want to switch to methyl b12 injections if I were you cause in most cases it seems the most pure, and practical form, however that is your personal call. Some say they do better with hydroxy b12 as well but that is totally a personal decision. Really while still having the lyme its kind of a challenge to find what symptoms come from what, whether the disease process itself or treatments used to help cure it.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Oops forgot to add, you also need the vitamin b2 at least 50mg a day to take when you take the methyl folate, and maybe other b vitamins as well if you desired. 10mg of each different version at highest, your potassium levels might drop way too low otherwise as it creates an impossible demand for it. Methylation treatment while cause massive need for higher levels of potassium at times. Usually most people can cover this with taking 3000mg a day, you want to be careful with that though because if you go much higher then that you run the risk of hyperkalemia which is just as potentialy fatal as hypokalemia. Get the b vitamins as separate versions and again if you take b6 only as P5P and never more then 10mg a day. One last thing to do is avoid all foods with folic acid in it, this will cause paradoxical deficiency of folate by means of methyl trap, where you get high blood levels of folic acid but absorption of methyl or natural folate sources becomes blocked.
 
Messages
11
Right now I've stopped the hydroxyb12 and am taking 1000 mcg of methyl b12 sublingual daily.

I messaged my doctor about my concerns so I'd assume they'll have me get bloodwork when they respond. I'm not going to add any supplements since I'm already changing a lot of different things right now. (stopping medications)
 
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Messages
11
Personally I am surprised you were able to handle those high doses over a year ago with no issues.

I read from this post that people with Lyme wouldn't reaction to the protocol. Maybe that's why. Today I took about 7mg of Deplin, and my body immediately relaxed. I also realized that I have the MTHFS gene. My understanding is I will need more higher doses of methylfolate. Is that correct?

I'm haven't been able to find what the best brand of AdoCbl is. Would you have a recommendation for a good potassium supplement?
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Right now I've stopped the hydroxyb12 and am taking 1000 mcg of methyl b12 sublingual daily.

I messaged my doctor about my concerns so I'd assume they'll have me get bloodwork when they respond. I'm not going to add any supplements since I'm already changing a lot of different things right now. (stopping medications)

Yeah blood work would be a good idea to see where you are at with a few other things. I would take at least 5000mcg of the methyl b12 a day though, thats a very solid dose and will help a lot without doing injections. Also be sure to take enough folate alongside it. Wait twenty minutes after for the folate and always take methyl b12 on an empty stomach at least 20 minutes from any meal. The best brands for methyl b12 are jarrows and country life.

In regards to your second post I don't really know, I can say I had a reaction to it as I got far too agitated, fried, and that amphetimine type high from taking too much of it. When he says non responders though I think he meant people who don't get fully better from the methylation protocol, this is because the endo toxins from the lyme are still there and need to be de toxed. It is important to keep a methylation protocol while treating the lyme though or you will not de tox well enough. I have the c667t heterzygous mutation for folate. Anabol naturals is the best adeno b12 brand here is a link.

http://www.iherb.com/anabol-naturals-dibencoplex-10-000-30-sublingual-tablets/9849

Its 10,000mcg so you may have to break pills into smaller pieces.

For potassium get the powder potassium gluconate from NOW brand name. Be sure never to take too much potassium in one day though, too much is as dangerous as too little. The RDV is 4000mg, talk to your doctor before starting anything new.
 
Messages
11
Yeah blood work would be a good idea to see where you are at with a few other things. I would take at least 5000mcg of the methyl b12 a day though, thats a very solid dose and will help a lot without doing injections. Also be sure to take enough folate alongside it. Wait twenty minutes after for the folate and always take methyl b12 on an empty stomach at least 20 minutes from any meal. The best brands for methyl b12 are jarrows and country life.

In regards to your second post I don't really know, I can say I had a reaction to it as I got far too agitated, fried, and that amphetimine type high from taking too much of it. When he says non responders though I think he meant people who don't get fully better from the methylation protocol, this is because the endo toxins from the lyme are still there and need to be de toxed. It is important to keep a methylation protocol while treating the lyme though or you will not de tox well enough. I have the c667t heterzygous mutation for folate. Anabol naturals is the best adeno b12 brand here is a link.

http://www.iherb.com/anabol-naturals-dibencoplex-10-000-30-sublingual-tablets/9849

Its 10,000mcg so you may have to break pills into smaller pieces.

For potassium get the powder potassium gluconate from NOW brand name. Be sure never to take too much potassium in one day though, too much is as dangerous as too little. The RDV is 4000mg, talk to your doctor before starting anything new.

Thanks for all the info. It's been very helpful. Do I need to be taking P5P? Does taking higher doses of Deplin counteract folic acid buildup? To what extent do I need to be avoiding it?
 
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Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Thanks for all the info. It's been very helpful. Do I need to be taking P5P? Does taking higher doses of Deplin counteract folic acid buildup? To what extent do I need to be avoiding it?

Do not consume any folic acid, methyl folate will help drive it out of the system, with higher doses of methyl folate you need adequate b2 because it will deplete someone told me at least 50mg of b2 with the folate if above 3000mcg a day. "IF" you take b6 only take P5P and never more then 10mg a day, that is a personal decision though. I read too much on stories of toxicity even at low doses to make it seem worth while, P5P is less prone to that, some with conditions like Pyroluria do need additional b6/P5P though sometimes at pretty high doses. The amount they would require though needs to be carefully titered to the amount of pyrroles found in urine testing. Sometimes its a genetic issue since birth, other terms a severe deficiency of zinc and b6 will happen with an infectious cause which is treatable without longer term supplementation.
 
Messages
11
Do not consume any folic acid, methyl folate will help drive it out of the system, with higher doses of methyl folate you need adequate b2 because it will deplete someone told me at least 50mg of b2 with the folate if above 3000mcg a day. "IF" you take b6 only take P5P and never more then 10mg a day, that is a personal decision though. I read too much on stories of toxicity even at low doses to make it seem worth while, P5P is less prone to that, some with conditions like Pyroluria do need additional b6/P5P though sometimes at pretty high doses. The amount they would require though needs to be carefully titered to the amount of pyrroles found in urine testing. Sometimes its a genetic issue since birth, other terms a severe deficiency of zinc and b6 will happen with an infectious cause which is treatable without longer term supplementation.

When you say folic acid are you referring to just the supplemented form?
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
When you say folic acid are you referring to just the supplemented form?

Folic acid is also in all a lot of food as a fortified additive, especially breads and the like. You need to read ingredient labels and make sure its not listed. You don't want to eat anything with folic acid in it or take it in the supplemented form.
 
Messages
11
For potassium get the powder potassium gluconate from NOW brand name. Be sure never to take too much potassium in one day though, too much is as dangerous as too little. The RDV is 4000mg, talk to your doctor before starting anything new.

Edit: nvm
 
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