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Hydroxocabalmin injections side effects

littlebird6180

Senior Member
Messages
119
I started the hydroxob12 injections - first twice a week starting about 4 weeks ago. My skin started to break out badly (I'm 36 and haven't had a breakout for about 15 years or more) - it took me a while to make the connection that it was worsening with the injections because at the same time, I started using a vitamin C serum. But thinking it was the vit C, I stopped that immediately but my skin only got worse.

My doctor stopped the injections because of a really bad overall crash I've been having and my last injection was about a week to 10 days ago...however, new spots continue to form. I feel like a teenager again. I read that it was a detox but wondering how long it took to clear up for those who have experienced it.

Thanks!
 

Knockknock

Senior Member
Messages
212
I started the hydroxob12 injections - first twice a week starting about 4 weeks ago. My skin started to break out badly (I'm 36 and haven't had a breakout for about 15 years or more) - it took me a while to make the connection that it was worsening with the injections because at the same time, I started using a vitamin C serum. But thinking it was the vit C, I stopped that immediately but my skin only got worse.

My doctor stopped the injections because of a really bad overall crash I've been having and my last injection was about a week to 10 days ago...however, new spots continue to form. I feel like a teenager again. I read that it was a detox but wondering how long it took to clear up for those who have experienced it.

Thanks!
Interesting.
I was going to start getting shots to. I wasn't sure if to use hydro or merhyl.. some Doctors say hydro is good. But many others say you get the best out of methyl.
Methyl12, is the most active form, exellent scavenger.
It can even be very positive for nerve damage repair when use in high doses.
Maybe what you said is true about the detox.
What was your dose x shot?
What is your condition?
Did you test for any co infections?
Why the doctor prescribed you hydro V12? For what??
 

aaron_c

Senior Member
Messages
691
Hi @littlebird6180

Have you considered taking B12 orally? I also wonder if you might benefit from trying methylcobalamin instead of hydroxycobalamin.

You might check out this thread, where they discuss paradoxical folate deficiency. In your case, this might occur if the hydroxycobalamin was unable to collect a methyl group to become methylcobalamin, thus trapping methylfolate which is unable to finish the cycle and become tetrahydrofolate (THF) without methylcobalamin. This only makes sense to me if the hydroxycobalamin is somehow competing for transport with methylcobalamin, and I'm not sure it does that. But if this is the problem, then taking methylcobalamin instead should change it.

If folate deficiency is part of the picture too, then you would need methylfolate and/or folinic (NOT folic) acid.

Good luck with all this!
 

littlebird6180

Senior Member
Messages
119
Thank you.
Interesting.
I was going to start getting shots to. I wasn't sure if to use hydro or merhyl.. some Doctors say hydro is good. But many others say you get the best out of methyl.
Methyl12, is the most active form, exellent scavenger.
It can even be very positive for nerve damage repair when use in high doses.
Maybe what you said is true about the detox.
What was your dose x shot?
What is your condition?
Did you test for any co infections?
Why the doctor prescribed you hydro V12? For what??

I have POTS, CFS/ME, Hashimotos' and I am homozygous for MTHFR along with several other mutations.

I've had a full range of tests to rule out other things.

The dose was 1ML.

Hi @littlebird6180

Have you considered taking B12 orally? I also wonder if you might benefit from trying methylcobalamin instead of hydroxycobalamin.

You might check out this thread, where they discuss paradoxical folate deficiency. In your case, this might occur if the hydroxycobalamin was unable to collect a methyl group to become methylcobalamin, thus trapping methylfolate which is unable to finish the cycle and become tetrahydrofolate (THF) without methylcobalamin. This only makes sense to me if the hydroxycobalamin is somehow competing for transport with methylcobalamin, and I'm not sure it does that. But if this is the problem, then taking methylcobalamin instead should change it.

If folate deficiency is part of the picture too, then you would need methylfolate and/or folinic (NOT folic) acid.

Good luck with all this!

I do also take oral b12 (not consistently), Niacin (every day) and folinic acid (every day).

I'll definitely explore the options with my doctor.

Just curious about the acne specifically and if anyone has had this side effect and how long it lasts.
 

Knockknock

Senior Member
Messages
212
Thank you.


I have POTS, CFS/ME, Hashimotos' and I am homozygous for MTHFR along with several other mutations.

I've had a full range of tests to rule out other things.

The dose was 1ML.



I do also take oral b12 (not consistently), Niacin (every day) and folinic acid (every day).

I'll definitely explore the options with my doctor.

Just curious about the acne specifically and if anyone has had this side effect and how long it lasts.
I have never heard of that reaction before.
What is homozygous for MTHFR, alone with several mutuations?
I mean what exactly that means? And what mutuations? If you dont mind me asking.
 

littlebird6180

Senior Member
Messages
119
I think it will make the most sense if I just share the letter that my doctor sent me explaining the mutations I have and why I need the treatment I do.

I've read several other reports of skin breakouts from the hydroxo shots - guess i'll have to cast a wider net online to search for my answers.
 

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I think it will make the most sense if I just share the letter that my doctor sent me explaining the mutations I have and why I need the treatment I do.
When it comes to methylation SNPs, your doctor doesn't really know what he or she is talking about. It's just regurgitating a fair bit of the Yasko crap, which is mostly wrong.
 

littlebird6180

Senior Member
Messages
119
When it comes to methylation SNPs, your doctor doesn't really know what he or she is talking about. It's just regurgitating a fair bit of the Yasko crap, which is mostly wrong.

That's quite a bold thing to say without explaining what you mean or providing sources or details. My doctor is considered one of the top ME doctors in the world. I'm not saying there isn't a chance she might be wrong but to just make such a declaration without further information seems inflammatory.
 
Messages
15,786
That's quite a bold thing to say without explaining what you mean or providing sources or details. My doctor is considered one of the top ME doctors in the world. I'm not saying there isn't a chance she might be wrong but to just make such a declaration without further information seems inflammatory.
The research into those SNPs either contradicts many of those claims, or it doesn't exist. CBS +/+ is beneficial, not problematic. VDR Taq +/- has almost no impact. MAOA is a gene, not a SNP, but the SNP she's probably referring to is not capable of doing anything. The BHMT SNPs have little or no impact. MTRR only has a significant impact when +/+ or compound heterozygous. And you have the most common and "average" version of COMT V158M.

The only SNP there which is really meaningful is MTHFR C677T. That one indicates a possible need for folate supplementation or eating more veggies, but that's the one thing she isn't recommending. The recommendations which are there don't seem to have any basis, beyond Yasko's ridiculous claims.

Otherwise intelligent doctors sometimes play "Methylation" to keep patients happy. They really shouldn't.
 

aaron_c

Senior Member
Messages
691
@littlebird6180 I hope you will report back if/when the potential detox reaction abates and you are able to take hydroxycobalamin shots again without the reaction.

Do you know how many of the people you read suggesting this is a detox reaction have "seen the other side," so to speak? I would personally be suspicious of someone claiming a detox reaction who still gets said reaction from taking the supplement/drug in question. Or at least I would be suspicious if they couldn't point me to people who have made it through successfully.

Don't get me wrong, I think it's great that you are going to see for yourself what happens, and I wish you the best of luck. Hopefully someone will pop up here with a pertinent and helpful story. If all else fails, however, you may want to look into Freddd's list of methyl-trap or "paradoxical folate deficiency" symptoms. Acne is on the list.
 

littlebird6180

Senior Member
Messages
119
@littlebird6180 I hope you will report back if/when the potential detox reaction abates and you are able to take hydroxycobalamin shots again without the reaction.

Do you know how many of the people you read suggesting this is a detox reaction have "seen the other side," so to speak? I would personally be suspicious of someone claiming a detox reaction who still gets said reaction from taking the supplement/drug in question. Or at least I would be suspicious if they couldn't point me to people who have made it through successfully.

Don't get me wrong, I think it's great that you are going to see for yourself what happens, and I wish you the best of luck. Hopefully someone will pop up here with a pertinent and helpful story. If all else fails, however, you may want to look into Freddd's list of methyl-trap or "paradoxical folate deficiency" symptoms. Acne is on the list.

Yes, it's a bit frustrating because all the threads claiming it's a detox end without any follow up from the OP. So there's nobody confirming this theory.
 

Knockknock

Senior Member
Messages
212
I think it will make the most sense if I just share the letter that my doctor sent me explaining the mutations I have and why I need the treatment I do.

I've read several other reports of skin breakouts from the hydroxo shots - guess i'll have to cast a wider net online to search for my answers.
Even more intresting lol, we may share thesame doctor.. im sure uounwant to keep prived the name since your covered up, my Doctor is also there..
Dr NK, Dr IR, Dr V.. those are the 3 main doctors there my is Dr V.
 

littlebird6180

Senior Member
Messages
119
The research into those SNPs either contradicts many of those claims, or it doesn't exist. CBS +/+ is beneficial, not problematic. VDR Taq +/- has almost no impact. MAOA is a gene, not a SNP, but the SNP she's probably referring to is not capable of doing anything. The BHMT SNPs have little or no impact. MTRR only has a significant impact when +/+ or compound heterozygous. And you have the most common and "average" version of COMT V158M.

The only SNP there which is really meaningful is MTHFR C677T. That one indicates a possible need for folate supplementation or eating more veggies, but that's the one thing she isn't recommending. The recommendations which are there don't seem to have any basis, beyond Yasko's ridiculous claims.

Otherwise intelligent doctors sometimes play "Methylation" to keep patients happy. They really shouldn't.

Again, can you provide me with a source and the research you are citing? I'm not going to challenge my doctor based on one person claiming their treatment approach has no basis and that she "doesn't know what she's talking about". That language just isn't helpful, but having real concrete information with sources and links is always welcome.

This is also a sliver of my treatment plan from my doctor, which is based on a very comprehensive investigation into my health from every angle...including monitoring b12 blood levels which have been low as well as many other levels. My genetic profile was not all that was used to make these recommendations.

Like most treatments, it seems that a lot of it seems to be trial and error and there aren't that many hard rules when it comes to treating ME. More often it's gathering as much information as the doctor can, and then custom tailoring a treatment plan for you which takes a tremendous amount of trial and error and time.
 

littlebird6180

Senior Member
Messages
119
Even more intresting lol, we may share thesame doctor.. im sure uounwant to keep prived the name since your covered up, my Doctor is also there..
Dr NK, Dr IR, Dr V.. those are the 3 main doctors there my is Dr V.

Yes, I think she's pretty commonly known so it wouldn't take much investigating. She's the best doctor I've ever seen in my life and I've seen (and wasted so much time on) hundreds. I hope your experience is also positive.

I also feel nearly the same level of confidence and gratitude towards my cardiologist who works frequently with NOVA.
 

Knockknock

Senior Member
Messages
212
Yes i do!
They is really good!
I believe they could be better. but the medical stablishment dont allow her to be.
They dont do funding, she gets very limitted resourses,
They know if some one can really crack down this illlness is her.
She was strong believer that CFS its some form of AIDS from the 1990's, like an infectious disease, a Retrovirus, as we all know she was an HIV Dr, still have Hiv/ AIDS patients.
She has expresed so many times that if she didnt knew better & the Aids word wasnt taken "she will call our diaese AIDS."
When retrovirus XMRV was found she said she knew it, she was very exited about it, but later everything crumbled.
She know this illness is an infectious disease.
If some one know is her.
Google her from 1992 when she started treating the outbrake of cases in miami with None HIV AIDS like illness.
She knows every doctor that have focus and pointed to the infectious contagious etiology od this desease have encountered a hard wall infront of them from the gov agencies and the medical stablishment.
So now she doesnt focus in who cause it, but in fixing & treating individually the disfuntions to make patients better."
 
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Messages
15,786
Again, can you provide me with a source and the research you are citing? I'm not going to challenge my doctor based on one person claiming their treatment approach has no basis and that she "doesn't know what she's talking about".
In the case of MAOA R297R it's largely down to basic genetics. A synonymous variant which produces exactly the same amino acid ("R" = Arginine) will almost never have an impact. The research from http://sci-hub.cc/10.1097/jcp.0b013e3181ac4aaf is sometimes used to claim it does have an impact, but that research demonstrates that it's not statistically significant. The only statistical significance from that paper is for a haplotype, which is often a nice way of saying that the researchers pushed the data around until it gave a false positive result. So in this case, with no corrections made for multiple comparisons, and a small sample size, even the haplotype is probably insignificant.

There are no problematic up-regulations of the CBS gene, unless you have three copies of it (Downs Syndrome) or half of it has been lopped off in an experiment (mutant lab yeast). CBS C699T "+/+" has been found to be mildly beneficial in the published research, with no evidence of even the possibility of harm ever shown: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2366099/

VDR Taq is again a synonymous variant. It's in the coding section, and produces exactly the same amino acid with either version. Any impact seen in research is probably due to it being in tight linkage disequilibrium with VDR Bsm, which is in a non-coding section of the gene and might be capable of having a very small impact. Yasko reports VDR Taq and VDR Bsm opposite of each other, meaning everyone using her interpretation will be flagged as being +/+ for one or +/- for both. VDR Taq is the one to ignore.

There's no research into the Yasko BHMT SNPs. Hence, she's making stuff up, and your doctor is just repeating it. Unfortunately I can't prove the lack of something's existence, so if you do find proof of such research, please do share it with us.

Some of the MTRR variants have very little or no impact. Others do, but on that gene they have to be homozygous (+/+) to have an impact. I'm not sure if that's explicitly stated in something published, but all of the MTRR research I've looked at shows that the +/+ mutations which have a substantial impact have almost no effect when +/-. The most common significant mutation is A66G +/+, which is discussed somewhat at http://www.ncbi.nlm.nih.gov/pubmed/12416982?dopt=Abstract

I don't deny that COMT V158M can have an impact on enzyme function either way (though the human body seems very well-equipped to handle the variations in function), but you've got the most common and "balanced" genotype for it. 50% of humanity has it.

MTHFR +/+, which doesn't seem to be discussed for treatment, indicates a 70% reduction in enzyme activity. This isn't very uncommon, however, and the primary risk associated with it is birth defects in the fetus of an affected mother. But research also shows that risk disappears if the mother is supplementing a normal dose of folic acid (active folate might be a better idea) or eating a diet with a good amount of vegetables. http://digitalcommons.unl.edu/cgi/viewcontent.cgi?article=1123&context=lawfacpub
 
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Knockknock

Senior Member
Messages
212
valentijn,
What you just said seem very interesting but hard to understand.
You challenged from the bigining what "little"bird said about the gene mutations& what she shared with us from her doctors at nova. but i dont see in your post anything that really show other wise.
Yes i think many that YASKO's work and hypothesis are not proven in a large clinical trial, but they are working out for many patients, thesane thing when XMRV was found, they tested invitro many HIV art's drugs, they found raltegravir and tenafovir to be selective against the retrovirus, that was never proven in vivo.
But as we all know many people have inproved on insetres( raltegravir) and travuda(tenafovir) , the double effect antiretroviral and antiviral( action against herpes) may explain the benefit.

This disease have been "(neglected)" if you want to call it that way for many years. Real reserach on the etiology and cause have been very limited, always sorrounded by mistery. Every time a research shade light& pin point to an infectious agent( pathogen).
Transmisible the reaearch is later disproven or dismissed by the gov agencies.
If you have a "Car" an your car is not funtioning propertly let say"it has a noise, you need to get a real mechanic and check what is the problem to really fix it, other wise you can change many parts and the problem persist.
Thesame happen to ME/CFS.
Every time something seem to be promising the study is dismised or never replicated for many diferent reasons either controversy or lack of funds from the Gov agencies.
In my opinion there has to be some sort of gen variation or mutation in me/cfs and probably in many other chronic auto immune diseases, if not gene mutation for sure we have a methyliation problem, our body is not using binding the esentials minerals and vitamins that we need to funtion properly, to provide the righ Cytotoxic molecules for our Nk cell to punch thru and effectively killing viruses and bacteria especially "cancer cells".

There has to be something changing our body, there has to be something changing our DNA, transforming our cells" only retroviruses are know to do that", Retroviruses have been sorrounding this illness from the beginning, Me/cfs but also many others autoimmune illnesess, Ms, Als, now they have the theorie of "HERV" wich i personaly believe its Bf and just a way out to this huge mess since there is so much awareness this days.
Bottom line is yes something is changing our gene expresion our DNA. Thats a fact"
 

Knockknock

Senior Member
Messages
212
In the case of MAOA R297R it's largely down to basic genetics. A synonymous variant which produces exactly the same amino acid ("R" = Arginine) will almost never have an impact. The research from http://sci-hub.cc/10.1097/jcp.0b013e3181ac4aaf is sometimes used to claim it does have an impact, but that research demonstrates that it's not statistically significant. The only statistical significance from that paper is for a haplotype, which is often a nice way of saying that the researchers pushed the data around until it gave a false positive result. So in this case, with no corrections made for multiple comparisons, and a small sample size, even the haplotype is probably insignificant.

There are no problematic up-regulations of the CBS gene, unless you have three copies of it (Downs Syndrome) or half of it has been lopped off in an experiment (mutant lab yeast). CBS C699T "+/+" has been found to be mildly beneficial in the published research, with no evidence of even the possibility of harm ever shown: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2366099/

VDR Taq is again a synonymous variant. It's in the coding section, and produces exactly the same amino acid with either version. Any impact seen in research is probably due to it being in tight linkage disequilibrium with VDR Bsm, which is in a non-coding section of the gene and might be capable of having a very small impact. Yasko reports VDR Taq and VDR Bsm opposite of each other, meaning everyone using her interpretation will be flagged as being +/+ for one or +/- for both. VDR Taq is the one to ignore.

There's no research into the Yasko BHMT SNPs. Hence, she's making stuff up, and your doctor is just repeating it. Unfortunately I can't prove the lack of something's existence, so if you do find proof of such research, please do share it with us.

Some of the MTRR variants have very little or no impact. Others do, but on that gene they have to be homozygous (+/+) to have an impact. I'm not sure if that's explicitly stated in something published, but all of the MTRR research I've looked at shows that the +/+ mutations which have a substantial impact have almost no effect when +/-. The most common significant mutation is A66G +/+, which is discussed somewhat at http://www.ncbi.nlm.nih.gov/pubmed/12416982?dopt=Abstract

I don't deny that COMT V158M can have an impact on enzyme function either way (though the human body seems very well-equipped to handle the variations in function), but you've got the most common and "balanced" genotype for it. 50% of humanity has it.

MTHFR +/+, which doesn't seem to be discussed for treatment, indicates a 70% reduction in enzyme activity. This isn't very uncommon, however, and the primary risk associated with it is birth defects in the fetus of an affected mother. But research also shows that risk disappears if the mother is supplementing a normal dose of folic acid (active folate might be a better idea) or eating a diet with a good amount of vegetables. http://digitalcommons.unl.edu/cgi/viewcontent.cgi?article=1123&context=lawfacpub
I forget to mention something,
You just said something about "ARGININE"
I have been on valtrex ( valacyclovir)for a year alone with many other suplemts, magnesium, CQ10, transfer facror colostrum etc.. I have improvements in diferent aspects with all this, but i notice that after i read that" LYSINE", has antiviral anti herpes action especially preventing reactivation and outbrakes i started to take it two pills daily, i feel since them i have improve more.
Im not sure if the improvements are the result of been on supplemts and valtrex for a year or if this has also to do with taking lysine but since im taking it i feel much better( my illness onset started about 1 year and a half ago, i was lucky enough to go see a good Me/Cfs doctor withing a year and get the right diagnostic to started treatment.
Will like to kow if anyone else is using LYSINE and if you have got any positive results.
 
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Messages
15,786
You just said something about "ARGININE"
It's one of the amino acids appearing in the enzymes produced by genes. Supplementing it wouldn't be related to the context in which I mentioned it.
In my opinion there has to be some sort of gen variation or mutation in me/cfs and probably in many other chronic auto immune diseases, if not gene mutation for sure we have a methyliation problem ....
I think a genetic cause is somewhat likely for at least some ME/CFS patients. But we have the common methylation mutations at the same rate as the general (healthy) population. So a genetic methylation defect is unlikely.

There has to be something changing our body, there has to be something changing our DNA, transforming our cells" only retroviruses are know to do that",
There are other alternatives, both to causation of the disease and to how DNA can "change". In the case of mitochondrial DNA mutations, they can be confined to different tissues due to chance at the embryonic stage, and the prevalence of the mutated mitochondria compared to non-mutated mitochondria can shift as we age. Thus the mutant mitochondria can end up dominating in a tissue (the eyes, the muscles, etc) and cause it to malfunction sometime in adulthood, instead of early childhood when most genetic diseases would manifest.
 

Knockknock

Senior Member
Messages
212
I agree about the gene mutation, but how can you say we have same methyliation as healthy populations if many studies have show that the methyliation cycle is very diferent in Cfs than in healty control.
Im not talking about Yasko's, Im talking from way back.
Nathan and many other doctors Researchers have notice un normal methyliation issues abnormalities in cfs not found in healthy control.
Jaja you just talk like if you were a scientistic very sure of what you are saying -:), no disrespect sarcasm or offense, are you??
Maybe you are and we dont know.
Now can you explain me since you said genetic.
How do you explain husband and wife totaly diferent genetics, developing ME/CFS at thesame time or around thesame time frame?? With a few months or years of each other?
The only thing that connect them is exchange of bodily fluids and daily living.
Two totally diferent persons perfeclty healthy individuals for 3 decades, them developing ME/ CFS, CIFIDS like symtomes 99.9% and diagnostic confimred by very knowledgebles doctors.
Can you explain This???