Herpes meds - where to buy them, how much does it cost and which ones do i need?

[Crux]

Hi Y'all;

My own personal virus is herpes zoster, shingles. I've had outbreaks for decades, but I didn't know what it was until about 5yrs. ago, when I had concurrent neuropathy. That type of pain took me to my knees.

Although I didn't try meds. for it, I did try numerous supplements, herbs, and amino acids. B12 has been the very best against shingles for me. It also has antiviral properties that prevent outbreaks in my case.

I've read that zinc also has antiviral properties and has been tested against herpes 1 and 2.

 

[ukxmrv]

I took zinc during the early years of ME but didn't notice any good effects on my viral symptoms. B12 did nothing either in injection form or other. Valtrex on the other hand helped within the first week.

Crux, if you find the info on zinc and H1 and 2 can you please post a link here? Would be interested to see if dosage etc is relevant.

 

[cureminded]

Hi, Cureminded.

You can find them in the detox and methylation forum, which is part of these Phoenix Rising forums. The reason I wrote methylation protocols (plural) is that there are several in use now. I have proposed one of them, the so-called Simplified Methylation Protocol (below). However, Freddd, who posts in Phoenix Rising forums also, recommends a somewhat different protocol, which works better for some people. There are also several others in use by various practitioners, in ME/CFS as well as in autism and in some other disorders. I don't think we are yet able to predict which will work better for a given person. The essence of these protocols is that they contain some form of folate (preferably methylfolate, but some use folinic acid) and high-dose B12, either taken sublingually or injected. Hydroxocobalamin works for about two-thirds of PWMEs, based on our clinical study, but some people need methylcobalamin.

Best regards,

Rich

Hi Rich,

Thanks for your answer. I realized later how the forum works and where to find all the info. Sorry to have taken up your time with this. Thanks for all the information you provide here. It really helps me to see the big picture and understand why things have been going the way they have. I was convinced that it was all just the EBV with me, but now I realize that the EBV was just a step in the wrong direction. My immune system was already weak when I was a child.

I was hoping to get my GP to agree to order some tests at the ELN in the Netherlands (since that's where I live) in order to figure out what it is that I would need to get started on. Could you please advise which tests to take? (And what rationale to give for having these tests for that matter?) I was thinking it was only the methylation tests at 1st, but saw Marlene's results and what she did seems to be a lot more extensive. Would you be willing to read those and clarify (interpret I mean)?

I started realizing just 5 weeks ago that what I'm experiencing is probably CSF. Haven't been able to find a doctor who understands much, did manage to find one who confirmed that it must be CFS since they couldn't find anything else. She prescribed B12 (hydroxy) which seems to help a little bit and also l-carnitine (sigma tau) which made me hyperactive and restless like I'm on caffeine. So I lowered the dose for now. I'm also taking a bunch of other stuff like zinc, selenium, chrome, lysine (for the EBV), calcium with magnesium, etc.

I was planning to start antivirals initially and decided to prep with vitamins, etc. to support better immunity, then read your intake and Fred's and decided to try the B12 protocol and see what happens. After I saw the bigger picture, I thought I might try without the antivirals at first, since there is probably a larger problem at the base of things. The more I'd like to start with something, the more I drown in this sea of information though. I would really appreciate some advice on the starting point.

Many thanks,
Cureminded

 

[richvank]

Hi, Cureminded.

I'm sorry that I have not responded to your post until now. Thanks for the reminder in the private message!

If you do all the testing at ELN, listed below are the tests I would recommend. It would be best if you could order all of them, but I understand that they cost money. I have used the wording that is on the ELF order sheet.

1. Methylation panel
2. Glutathione-tot., Glutathione ox./red.

(If you specify "Methylation pathways panel (USA version)," you should receive numbers 1 and 2 above, and in addition, you should receive a measurement of methylcobalamin, which is helpful for detecting a functional B12 deficiency.)

3. Vitamin panel 16
4. Elements in blood III
5. Amino-acids (under "Miscellaneous") This is a blood test.
6. Amino-acids (under "Urine").
7. Organic acids (under "Urine")
8. Faeces Culture (basic) +parasitology+Helicobacter pylori

These additional tests will determine whether there are deficiencies in the vitamins, minerals, or amino acids that are needed by the methylation cycle and related pathways, and they will also give a general picture of how your overall metabolism is operating and what the status of your digestive system is.

These are the tests I would recommend for people in general who have ME/CFS. There are other tests that would be helpful in certain particular cases, depending on the issues involved.

I hope this is helpful.

Best regards,

Rich

 

[cureminded]

Hi, Cureminded.

I'm sorry that I have not responded to your post until now. Thanks for the reminder in the private message!

If you do all the testing at ELN, listed below are the tests I would recommend. It would be best if you could order all of them, but I understand that they cost money. I have used the wording that is on the ELF order sheet.

1. Methylation panel
2. Glutathione-tot., Glutathione ox./red.

(If you specify "Methylation pathways panel (USA version)," you should receive numbers 1 and 2 above, and in addition, you should receive a measurement of methylcobalamin, which is helpful for detecting a functional B12 deficiency.)

3. Vitamin panel 16
4. Elements in blood III
5. Amino-acids (under "Miscellaneous") This is a blood test.
6. Amino-acids (under "Urine").
7. Organic acids (under "Urine")
8. Faeces Culture (basic) +parasitology+Helicobacter pylori

These additional tests will determine whether there are deficiencies in the vitamins, minerals, or amino acids that are needed by the methylation cycle and related pathways, and they will also give a general picture of how your overall metabolism is operating and what the status of your digestive system is.

These are the tests I would recommend for people in general who have ME/CFS. There are other tests that would be helpful in certain particular cases, depending on the issues involved.

I hope this is helpful.

Best regards,

Rich

Thanks Rich. This is very helpful. I am seeing a physician who works with the ELN next month. I believe she is even based in the same building. She did mention that most of the tests are very expensive and that she would like to try simpler stuff first. I will discuss the tests that you specified with her.

 

[heapsreal]

Hi Rich,

Thanks for your answer. I realized later how the forum works and where to find all the info. Sorry to have taken up your time with this. Thanks for all the information you provide here. It really helps me to see the big picture and understand why things have been going the way they have. I was convinced that it was all just the EBV with me, but now I realize that the EBV was just a step in the wrong direction. My immune system was already weak when I was a child.

I was hoping to get my GP to agree to order some tests at the ELN in the Netherlands (since that's where I live) in order to figure out what it is that I would need to get started on. Could you please advise which tests to take? (And what rationale to give for having these tests for that matter?) I was thinking it was only the methylation tests at 1st, but saw Marlene's results and what she did seems to be a lot more extensive. Would you be willing to read those and clarify (interpret I mean)?

I started realizing just 5 weeks ago that what I'm experiencing is probably CSF. Haven't been able to find a doctor who understands much, did manage to find one who confirmed that it must be CFS since they couldn't find anything else. She prescribed B12 (hydroxy) which seems to help a little bit and also l-carnitine (sigma tau) which made me hyperactive and restless like I'm on caffeine. So I lowered the dose for now. I'm also taking a bunch of other stuff like zinc, selenium, chrome, lysine (for the EBV), calcium with magnesium, etc.

I was planning to start antivirals initially and decided to prep with vitamins, etc. to support better immunity, then read your intake and Fred's and decided to try the B12 protocol and see what happens. After I saw the bigger picture, I thought I might try without the antivirals at first, since there is probably a larger problem at the base of things. The more I'd like to start with something, the more I drown in this sea of information though. I would really appreciate some advice on the starting point.

Many thanks,
Cureminded

https://docs.google.com/document/pub?id=1QEmWar_CwKfWaHhpzamSWgEAjd2S44CTUTiJk9QIeY0
Some of the tests listed in the link maybe covered by the health system there and worth persuing.
U seem like u may be a good candidate for antivirals especially with shingles viruses reactivating all the time.

cheers!!!

 

[cureminded]

https://docs.google.com/document/pub?id=1QEmWar_CwKfWaHhpzamSWgEAjd2S44CTUTiJk9QIeY0
Some of the tests listed in the link maybe covered by the health system there and worth persuing.
U seem like u may be a good candidate for antivirals especially with shingles viruses reactivating all the time.

cheers!!!

Hi Heapsreal. That's true thanks for the info. As far as I understood not all tests of the ELN are covered. And those that are, are only covered if requested by a GP or a pysician that works in a hospital. Crazy system here. The physician I will be seing isn't one of those, so I would have to ask my GP to request the tests and I don't know if she would be happy with that, but I might just try.

Had the EBV IgG finally tested yesterday. Don't think it's the VCA IgG though, that is normally tested here. Trying to find that out. For now not trying the antivirals yet. My GP romised to schedule an appointment with an ifectiologist that she knows.

I don't think I have the shingles virus though. That's HHV6 right? You must have confused me with someone else.

 

[heapsreal]

Hi Heapsreal. That's true thanks for the info. As far as I understood not all tests of the ELN are covered. And those that are, are only covered if requested by a GP or a pysician that works in a hospital. Crazy system here. The physician I will be seing isn't one of those, so I would have to ask my GP to request the tests and I don't know if she would be happy with that, but I might just try.

Had the EBV IgG finally tested yesterday. Don't think it's the VCA IgG though, that is normally tested here. Trying to find that out. For now not trying the antivirals yet. My GP romised to schedule an appointment with an ifectiologist that she knows.

I don't think I have the shingles virus though. That's HHV6 right? You must have confused me with someone else.

sorry that was crux who had shingles virus.
Are u finding lysine helpful?
r u in europe? if u are it might be alot easier for you to get immunovir which would be helpful to improve your immune function and has helped others with ebv etc

 

[cureminded]

Hi Heapsreal,

I have never taken more than 2 lysine pills a day, I usually take just one and to be honest I am not sure if it really helps. Maybe I need to take a higher dose. I'm based in the Netherlands. Immnovir is not reimbursed here for CFS unfortunately.

 

[Crux]

Hi Y'all, Hi UKXMRV ;

Sorry I missed your question asking for links about the antiviral properties of B12, Zinc, and Copper, as well. These reports mostly use petri dishes, and that we are not , but here they are anyway. I believe it's impossible for a single substance to perform in isolation, and I think that's why test results vary.

http://www.mdpi.com/1424-8247/3/6/1711

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC86580/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3283972/

http://mail.benthamscience.com/ccb/samples/ccb3-3/0003CCB.pdf