Hi all,
(Sorry for the lengthy first post - I will try to make it shorter in the future... )
I am new to this fantastic forum and would like to introduce myself and the issues I am currently facing:
I am living in Germany (Europe's #1 Lyme country... ) and suffering from stage 3 Lyme disease and chronic Bartonella infection - likely caused by a tick bite in 2002 - since late 2008 (only finally diagnosed in 2010), and due to prolonged antibiotics therapy, I now also am affected by CFS/mitochondriopathy.
Due to the Bartonella infection (which is currently treated with Levaquin with yet unknown outcome) and the fact that I have the COMT Met/Met variant (causing decreased deactivation of stress hormones), a hyperactive nervous system, and a permanent feeling of subtle anxiety for no known reason are my current main issues (against which I am taking "some" Clonidine and 3 mg of Bromazepame per day).
In addition, I already know that my phase 2 detox system is negatively affected by reduced GSTP1 activity, a "null" GSTM1 and two NAT2 variants making me a slow acetylator - which caused several issues with my tolerance of antibiotics in the past...
I am also undergoing treatment for CFS/mitochondriopathy, which included - in addition to several other vitamins, minerals etc. - the following i.v. injections twice a week:
Due to the fact that the above treatment didn't seem too successful, my doc and I changed this on Thursday last week to become
It started on Thursday afternoon with severe headache, tiredness and feeling completely powerless (and I first thought: well, finally, there is something going on!), but then throughout Thursday night, I got severe symptoms of anxiety and agitation:
I did some thorough resarch of the posts in this forum and developed some theories that could possibly explain what happened to me:
1) I might have been experiencing immediate conversion of active MB12 and AB12 to Glutathionyl-B12 as described by Freddd for my first series of injections:
2) Changing the MB12 and AB12 combo to HB12 as for my most recent injection might have produced more stable active forms of B12 and (re)started the methylation cycle for the very first time, thereby causing all my symptoms perceived.
3) I am completely unsure how to classify the reactions my body developed to that most recent injection: Would/could this be
Do you think my assumptions in 1) to 3) about what happened to me might be valid?
Regarding 3) specifically:
I will have my MTHFR being analyzed within next few weeks, but from my description, are you able to discern (or maybe at least provide an assumption) which one is more likely?
For now, I have stopped any B12 intake until the symptoms will be down to the level I am used to.
Would you recommend that I start with 5-MTHF even before I know the results of my genetic testing (note that I never took any 5-MTHF so far, only folic acid which always tended to cause issues)?
And would it be more advisable to stay with the i.v. a combo of HB12 and Glutathione/ACC (which I now know I am responsive to...) or remove the Glutathione and ACC from the injection and continue with MB12 and AB12?
(Note that I wouldn't be surprised to receive different advice here due to the different points of view of Freddd's and Rich's protocols.)
Thanks a million in advance for any help!
Best regards from Germany,
awl29
(Sorry for the lengthy first post - I will try to make it shorter in the future... )
I am new to this fantastic forum and would like to introduce myself and the issues I am currently facing:
I am living in Germany (Europe's #1 Lyme country... ) and suffering from stage 3 Lyme disease and chronic Bartonella infection - likely caused by a tick bite in 2002 - since late 2008 (only finally diagnosed in 2010), and due to prolonged antibiotics therapy, I now also am affected by CFS/mitochondriopathy.
Due to the Bartonella infection (which is currently treated with Levaquin with yet unknown outcome) and the fact that I have the COMT Met/Met variant (causing decreased deactivation of stress hormones), a hyperactive nervous system, and a permanent feeling of subtle anxiety for no known reason are my current main issues (against which I am taking "some" Clonidine and 3 mg of Bromazepame per day).
In addition, I already know that my phase 2 detox system is negatively affected by reduced GSTP1 activity, a "null" GSTM1 and two NAT2 variants making me a slow acetylator - which caused several issues with my tolerance of antibiotics in the past...
I am also undergoing treatment for CFS/mitochondriopathy, which included - in addition to several other vitamins, minerals etc. - the following i.v. injections twice a week:
- 5mg of Methylcobalamin
- 10mg of Adenosylcobalamin
- 2 amps of Glutathion 600mg
- 3 amps of NAC (300 mg acetylcysteine)
- 3 amps of Vitamin C (1000mg).
Due to the fact that the above treatment didn't seem too successful, my doc and I changed this on Thursday last week to become
- 3mg of Hydroxycobalamin
- 2 amps of Glutathion 600mg
- 3 amps of NAC (300 mg acetylcysteine)
- 3 amps of Vitamin C (1000mg)
It started on Thursday afternoon with severe headache, tiredness and feeling completely powerless (and I first thought: well, finally, there is something going on!), but then throughout Thursday night, I got severe symptoms of anxiety and agitation:
- complete sleeplessness even though increased doses of Bromazepame and Clonidine
- psychiatric symtoms (severe depression even up to temporarily feeling suicidal)
- really severe panic attacks with coughing and crying for several hours
- tremor of arms and hands when trying to do fine motor activities
- strange thoughts and dreams, a feeling like continuous brain fog
- hugely reduced ability to concentrate
- transient numbness of fingers, feet (especially heels while lying in bed).
I did some thorough resarch of the posts in this forum and developed some theories that could possibly explain what happened to me:
1) I might have been experiencing immediate conversion of active MB12 and AB12 to Glutathionyl-B12 as described by Freddd for my first series of injections:
The mechanism is pretty simple. Glutathione, whether infused or precursors like NAC/l-glutamine, combines with (...) specifically mb12 and adb12, the two active forms. It combines with these two forms at least, virtually immediately, and without limit. It would appear that 1mg of glutathione can combine with 4mg of cobalamin. As the body's entire load of cobalamin is said to be 2.5 to 5 mg, 1.25mg of glutathione is enough to destroy 100% of the body's entie load of active and inactive cobalamins. When it combines with cobalamin forming glutathionylcobalamin for some reason it becomes a preferred excretion form being excreted even more rapidly than cyanocbl, the preferred speed champion for kidney excretion. This can be easily seen by anybody who takes b12 of a large enough dose. Suddenly the urine becomes MUCH redder very suddenly providing very visual evidence of the rapid excretion of far more than can be accounted for by the most recent dose.
2) Changing the MB12 and AB12 combo to HB12 as for my most recent injection might have produced more stable active forms of B12 and (re)started the methylation cycle for the very first time, thereby causing all my symptoms perceived.
3) I am completely unsure how to classify the reactions my body developed to that most recent injection: Would/could this be
- real "detox" symptoms (due to Lyme or Bartonella toxins or amalgame)?
- the paradoxical folate deficiency symptoms that have been described by both Rich and Freddd as the consequence of some break up in the methylation cycle - again quoting Freddd:
Then when the methylfolate enters the cell for a DNA transaction and finds no cofactor in the form of mb12 the methylfolate is flushed out of the cell. This was identified by Rich as the "methyl trap", sometimes also called the "methylfolate trap", which was first hypothesized perhaps 50 years ago. This gives a high serum level of methylfolate yet induces severe folate deficiency symptoms so may look paradoxical but isn't caused by taking folic acid or folinic acid.
Do you think my assumptions in 1) to 3) about what happened to me might be valid?
Regarding 3) specifically:
I will have my MTHFR being analyzed within next few weeks, but from my description, are you able to discern (or maybe at least provide an assumption) which one is more likely?
For now, I have stopped any B12 intake until the symptoms will be down to the level I am used to.
Would you recommend that I start with 5-MTHF even before I know the results of my genetic testing (note that I never took any 5-MTHF so far, only folic acid which always tended to cause issues)?
And would it be more advisable to stay with the i.v. a combo of HB12 and Glutathione/ACC (which I now know I am responsive to...) or remove the Glutathione and ACC from the injection and continue with MB12 and AB12?
(Note that I wouldn't be surprised to receive different advice here due to the different points of view of Freddd's and Rich's protocols.)
Thanks a million in advance for any help!
Best regards from Germany,
awl29