Shingles again WTF

[Seven7]

1) Take pictures so you can document how many times you get it a year.
2) Up or change antivirals or add 2 different types (just a thought I am not doctor).
3) I think you need to raise NK or won't be much else u can do, so maybe focus on that, if you cannot get activity at least test numbers.

I hope you get better soon.

 

[heapsreal]

1) Take pictures so you can document how many times you get it a year.
2) Up or change antivirals or add 2 different types (just a thought I am not doctor).
3) I think you need to raise NK or won't be much else u can do, so maybe focus on that, if you cannot get activity at least test numbers.

I hope you get better soon.

I been taking pics although not always easy to photograph as its amongst hair.

Im trying with things for nk function but i dont have access to nk function testing anymore, so i dont know how these things are helping. Its strange here with testing as many things i can't get done like america eg viral titres, just wont test them ??

Immunovir helped increase numbers slightly but too costly to maintain . Also was on it when first got shingles so was feeling negative towards using it. But now im on inosine which is more affordable to maintain so will keep it going longer than i have done in the past.

I do want to try some higher dose herbs for immune system but will chat to dr about it.

I plan to use this thread to help keep a record too. Its now 12 months since first shingles episode .

Thanks

 

[Vineyard1]

I know you are the NK Cell "go to guy "for ideas on how to increase their activity but have you tried Transfer Factor to add to your repetoire?....wishing you peace and perseverance!

 

[heapsreal]

I know you are the NK Cell "go to guy "for ideas on how to increase their activity but have you tried Transfer Factor to add to your repetoire?....wishing you peace and perseverance!

Lol. Yes tried transfer factor from prohealth. Nk function testing i had was in a research study so i cant get it done outside of that. I wish i could then i wouldhave tested these products with nk testing.

I sometimes think nk function testing isn't standard as they would find too many cfsers will low nk function and have to treat it somehow and also they can deny antivirals etc while its not a standard test. Low nk cell deficiency ie low numbers is a recognized disorder and treatment for them is prophylactic antivirals and antibiotics. Psychobabblers and other biological causes of cfs deniers wouldnt want this???

I need to research it more but maybe valcyte isnt that effective for vzv. I'm starting to think famvir is the drug for vzv?

@lnester7 i know you're a big believer in ldn for nk function. I am thinking of it but cost is a factor here as everything in australia is expensive and being on tramadol and occassionally codeine for pain, im just not sure I'd get value from it.

 

[Gingergrrl]

@heapsreal I am so sorry to hear that you have shingles again and WTF is right . I hope you are feeling better very soon.

I have a question for you since you are now sadly an expert on shingles . I have had two doctors now tell me that it is possible that the VZV virus can affect the phrenic nerve (or other nerves?) to the diaphragm. I have never had shingles but have tested IgM+ for VZV for close to two years. I had a minor case of chicken pox once at age 11. It is a long-shot and I have not been up to Stanford yet to see the autonomic neurologist. I just wondered if you have ever heard of "zoster sin herpete" where it affects internal nerves but no outward shingles?

 

[heapsreal]

@heapsreal I am so sorry to hear that you have shingles again and WTF is right . I hope you are feeling better very soon.

I have a question for you since you are now sadly an expert on shingles . I have had two doctors now tell me that it is possible that the VZV virus can affect the phrenic nerve (or other nerves?) to the diaphragm. I have never had shingles but have tested IgM+ for VZV for close to two years. I had a minor case of chicken pox once at age 11. It is a long-shot and I have not been up to Stanford yet to see the autonomic neurologist. I just wondered if you have ever heard of "zoster sin herpete" where it affects internal nerves but no outward shingles?

Yes i have heard of zoster sin. I think pre shingles it was possible some of my viral symptoms were vzv and maybe why i responded well to famvir. Also mollaret's meningitis which is a chronic form of vzv and not always outward signs of infection like shingles.

As for the nerves to the diaphragm , I dont think they know for sure unless an autopsy was done. I had chickenpox like pustule rash on both shins after shingles on head. Theres apparently no nerves there to be infected but it infected that area, im guessing it doesnt have to be a nerve or vzv could be a systemic infection like any other virus. Thats how shingles makes me feel . So in your case it might do, just not in the traditional thinking of medicine.

You have tried antivirals?? I know u have answered this before but hard to keep track of everyone .

I think the longer one has cfs the more we realise how much medicine doesnt know, but it doesnt stop some drs making out they know everything or dismissing something because its not common or wasnt taught.

Good luck.
If u find anything interesting on vzv please post.
Cheers

 

[maryb]

Are you still taking antibiotics @heapsreal ?

 

[Violeta]

If varicella zoster is like ebv in that it relies on heat shock protein as is seen in this study

http://onlinelibrary.wiley.com/doi/10.1111/j.1348-0421.1998.tb02349.x/full

then reducing cellular heat shock protein through reducing endoplasmic reticulum stress might help.

Berberine HCl does help that, but it also for me seems to cause autoimmunity issues. It's a tricky problem, we all know viruses are so tricky. Reishi and chaga are good in that they balance immunity. Two days ago I would have given more possible choices maybe with respect to diet, but my sore throat and cough came back overnight.

PS: Does anyone know how to support neutrophil levels?

 

[heapsreal]

Are you still taking antibiotics @heapsreal ?

Yes alternating courses bactrim and augmentin basically to keep chronic sinuses down which seems to be doing a good job.
My dr actually said maybe its a staph infection then said maybe not as the rash is in a definite pattern like shingles . 2 weeks i see dr for testing done on rash. It seems to be responding to famvir.

 

[heapsreal]

PS: Does anyone know how to support neutrophil levels?

I have tried maybe herbal immune boosters like astragalus etc??

 

[Violeta]

I have tried maybe herbal immune boosters like astragalus etc??

Okay, thanks, I have some, I'll try to get consistent with it.

Also, zinc and A help the immune system fight viruses, I hadn't been taking that for a couple of weeks.

 

[Gingergrrl]

@heapsreal

Yes i have heard of zoster sin.

Thanks and was just curious as a friend told me of zoster sin herpete and I was not familiar with it. I have no idea if it pertains to me, only that I test IgM+ for VZV on every test for almost two years and two docs have told me that this virus can affect the diaphragm/breathing and I have very weak muscular ability on breathing tests. It's a long-shot but something I want to try to get more info on.

I think pre shingles it was possible some of my viral symptoms were vzv and maybe why i responded well to famvir. Also mollaret's meningitis which is a chronic form of vzv and not always outward signs of infection like shingles.

I've never had shingles and am not familiar with mollarets meningitis. What is that? Will Google it shortly. Never mind, just Googled it and it does not match my symptoms at all.

As for the nerves to the diaphragm , I dont think they know for sure unless an autopsy was done.

I am afraid that whatever is affecting my breathing will not be found until autopsy (or may never be found.) I know it is probably not connected to VZV but cannot rule it out at this point.

I had chickenpox like pustule rash on both shins after shingles on head. Theres apparently no nerves there to be infected but it infected that area, im guessing it doesnt have to be a nerve or vzv could be a systemic infection like any other virus. Thats how shingles makes me feel . So in your case it might do, just not in the traditional thinking of medicine.

I agree that it could be doing something internally that traditional medicine at this point in time cannot understand.

You have tried antivirals?? I know u have answered this before but hard to keep track of everyone .

Yes, I took Famvir at 1500 mg/day for eight months with no benefit (or side effects) and then I tried Valcyte for 2-3 months off & on but did not tolerate it at any dose. I was IgM+ for EBV, HSV 1&2 besides VZV and IgG+ for a few others like HHV-6, etc.

I think the longer one has cfs the more we realise how much medicine doesnt know, but it doesnt stop some drs making out they know everything or dismissing something because its not common or wasnt taught.

At this point, am really not sure what I have except definitive viral re-activation, POTS/dysautonomia, MCAS, etc.

Good luck.If u find anything interesting on vzv please post. Cheers

I definitely will and if you learn anything re: VZV affecting breathing/diaphragm please post or PM me as well. Thanks again!

 

[zzz]

@heapsreal, have you tried Dr. Goldstein's treatments for shingles? Zantac (ranitidine) would be the first choice here, and then if that didn't work within a few days, Tagamet (cimetidine). Tagamet is more powerful, based on anecdotal reports, but also may have more side effects.

Many people are aware that Dr. Goldstein used these drugs for treating EBV, but he also used them successfully for treating VZV as well.

 

[heapsreal]

@heapsreal, have you tried Dr. Goldstein's treatments for shingles? Zantac (ranitidine) would be the first choice here, and then if that didn't work within a few days, Tagamet (cimetidine). Tagamet is more powerful, based on anecdotal reports, but also may have more side effects.

Many people are aware that Dr. Goldstein used these drugs for treating EBV, but he also used them successfully for treating VZV as well.

I have read about them but not alot or for vzv. Thanks i will look into it further. Good to have other options as i only have famvir to use.

I did stop famvir for a short period when i increased valcyte dosage ? Thinking valcyte would have it covered but now i know.

Cheers for that.

 

[heapsreal]

@zzz do u have some links handy to zantac and vzv?

Cheers

 

[heapsreal]

https://flutrackers.com/forum/forum...imetidine-immunomodulatory-effects-re-viruses

Interesting info on zantac for herpes viruses . I need to reread it and search other articles but looks like it works by inhibiting t lymphocyte suppressor cells, which helps increase t cell response and it also said increases nk function .

Dosage mentioned were zantac 200mg 3 times during the day and 400mg at night. Continue with treatment 1 to 2 weeks after lesions heal.

Looks like a very cheap generic drug. Also a 12hrs release pill at 150mg. Not sure how slow release would effect dosing.

The concerns are that it can stress the liver so would be a concern for long term use and would need regular blood work?? From memory i think it can increase blood levels of some other drugs similar to probenecid , but im not certain and need to look into it further .

Looks like an interesting and cheap alternative . Interested to hear if anyone has any experience with it for shingles etc.
Worth chatting with the dr about this.

 

[PatJ]

Have you ever tried painting the area with iodine to relieve pain?

http://www.curezone.org/forums/am.asp?i=869568

The lesions from the Shingles are slowly healing, but still very painful. Most of the time its a burning pain, rather like a bad sunburn. Sometimes the pain becomes deep and severe. Wombat's Lugol's salve was always comforting, but a couple of days ago, in a fit a pain and desperation, I painted the healing lesions with Lugol's. To my amazement, I had eight hours of relief. Last night I painted the whole area around the lesions which remains slightly red and hot to touch. I had the best pain free night I have had since the Shingles first began. I painted again this morning and had eight hours of relief.

I don't know what the mechanism of Lugol's easing the pain might be, but it works and that has been such a relief for me.

 

[minkeygirl]

@heapsreal Wouldn't that much zantac mess up your gut? Doesn't it reduce stomach acid? if you have low acid to start this may not be good. Don't really understand the science behind it so I may not know what I'm talking about. Again lol

 

[heapsreal]

@heapsreal Wouldn't that much zantac mess up your gut? Doesn't it reduce stomach acid? if you have low acid to start this may not be good. Don't really understand the science behind it so I may not know what I'm talking about. Again lol

No idea. Just repeating what i read. Looking back at some old threads it seems some did well on 1 to 2 doses a day.

 

[minkeygirl]

No idea. Just repeating what i read. Looking back at some old threads it seems some did well on 1 to 2 doses a day.

I remember reading how as you get older you have less stomach acid. And what we think is problem of having too much acid, is actually not enough. That's just sticking in my head.

I'll be curious to see what you find out. Another cure.