Reoccurring chickenpox and shingles.

[Wayne]

I'm not so sure I could make it through another outbreak, thus the vaccine was a no brainer. Believe me, that left me terrified for years.

Hi @lenora -- It sounds like your experiences with shingles were pretty "searing", and certainly not something you'd ever want to experience again. In the following video, Dr. Eric Berg (D.C) expounds on the importance of Vit. D in preventing and/or treating shingles (I think he makes great videos). He (and others) say lysine can also be very helpful. -- Here's to you never getting shingles again!

How to NEVER Get Shingles Again

 

[heapsreal]

In regards to the shingles vaccine, I was hesitant as it was quite expensive. But I also wasn't sure it would work on me as I have high level on antibodies to varicella from all the previous chickenpox and shingles infections.

The idea behind the vaccine is to increase your antibodies. I think in me and probably in many cfsers, shingles reactivates because of our low natural killer cell function. I think we need a strong adaptive immune system (antibodies) as well as a strong innate immune system (nk function, neutrophils and T cells) to keep shingles suppressed.

I think it's probably the reason behind most viral reactivations in cfsme, we need strong innate and adaptive immune systems. There's threads on here where people have lost there antibody titre to ebv, that's another protective mechanism that these dam viruses don't have, to hold them back.

 

[Treeman]

Hi @lenora -- It sounds like your experiences with shingles were pretty "searing", and certainly not something you'd ever want to experience again. In the following video, Dr. Eric Berg (D.C) expounds on the importance of Vit. D in preventing and/or treating shingles (I think he makes great videos). He (and others) say lysine can also be very helpful. -- Here's to you never getting shingles again!

How to NEVER Get Shingles Again

I watched the video, but don't think it's applicable to me.

I have loads of vit d in me as testing has shown. I sunbathe every opportunity I get and still have tan lines from the summer. But I still get repeat shingles infections.

Vit d may support the immune system but when one is in such a poor state it needs more support than vit d can offer.

 

[Hoosierfans]

Starting Famvir today. Please say some special prayers for me. I need relief from this pain and burning and dizziness that has been non stop for the last 5 years.

Gonna start at 250 3 x and then move up to 500 3 x after about a week.

 

[Hoosierfans]

Starting Famvir today. Please say some special prayers for me. I need relief from this pain and burning and dizziness that has been non stop for the last 5 years.

Gonna start at 250 3 x and then move up to 500 3 x after about a week.

So it’s been an interesting couple of days. I honestly didn’t think I’d feel anything from the Famvir this soon, but my burning pain is down, dizziness is down, brain fog is a bit clearer and my lightheadedness is down — my body feels more stable. But today I’m getting slammed w a migraine, which I don’t usually have. Hopefully it’s those nasty viruses in my brain / vessels dying. But even with the migraine, it feels like it’s doing something slowly positive…so I’m hopeful.

Anyone else get headaches / migraines on Famvir?

 

[Wayne]

Anyone else get headaches / migraines on Famvir?

Hi @Hoosierfans -- I once tried Acyclovir (I believe similar to Famvir) and got a pretty severe headache from only taking about a 1/2 dose. I stopped when I felt it was creating too much toxicity for my body to handle. I sometimes think about trying it again and see what happens.

 

[Hoosierfans]

@Wayne thanks for the feedback.

I went through years and years of “lyme” treatment where the common mantra was “you’ll feel worse before better” and “herxing” was a good thing…I followed that but just got worse and worse…convinced by the mantra that “better” was on the other side. It never was.

I think it’s super wise to listen to our bodies. I’m def feeling better in some ways, and worse in others, so on balance it *feels* like this is the right thing — especially bc it’s hitting one of my major symptoms (the all over burning pain) in a significant way. But yep, I will def keep an eye out for what is “too much.” Cheers.

 

[Wayne]

I went through years and years of “lyme” treatment where the common mantra was “you’ll feel worse before better” and “herxing” was a good thing…I followed that but just got worse and worse…convinced by the mantra that “better” was on the other side. It never was.

Just to mention, I once read a testimonial by a guy who kept getting worse and worse from whatever Lyme treatment he tried. His body just couldn't handle the dieoff. He then discovered he was low on iodine, brought his levels back up to normal, and was then able to handle Lyme dieoff.

Who knows how many people that would work for, but certainly something to consider. I've read that as much as 80% of the population is iodine deficient, especially new mothers, who's pregnancies require lots of iodine from the fast developing fetus. I've also read people can get cancer from having low iodine levels.

Iodine and Apoptosis - Implications For Immunity, Autoimmunity, Leaky Gut, Methylation, Cancer, etc.​

 

[Hoosierfans]

Yeah iodine is a huge issue and correcting it helps a lot of people. Not me tho — I tried it and even in minuscule doses I felt horrible brain symptoms). And we did that while I was treating “Lyme” (if I ever really had Lyme; I’m not convinced I did)

 

[Wayne]

especially bc it’s hitting one of my major symptoms (the all over burning pain) in a significant way.

Just to mention... I read an amazing testimonial on Amazon by a guy who discovered grape seed extract completely eliminated some systemic body wide pain--after taking just a single capsule. His pain has stayed in remission as he continues to take it. Who'd a thunk it?

 

[datadragon]

In the following video, Dr. Eric Berg (D.C) expounds on the importance of Vit. D in preventing and/or treating shingles (I think he makes great videos).
I have loads of vit d in me as testing has shown. I sunbathe every opportunity I get and still have tan lines from the summer. But I still get repeat shingles infections.
Vit d may support the immune system but when one is in such a poor state it needs more support than vit d can offer.

In brief, during an active infection, perhaps getting calcitriol 1,25-dihydroxyvitamin D3 the active form from a doctor might help rather than the over the counter 25-D which requires magnesium, zinc and vitamin A for conversions and VDR function. Both zinc and Vitamin A can become deficient and less available to utilize during prolonged inflammation/infection and likely why the typical over the counter D doesnt work for everyone for this usage when taken alone. This does not require genetic mutations in those areas as Dr Berg thought, only excessive inflammation/infection that is chronic being present leading to the low Zinc and Vitamin A levels.

IL-17A increase is shown as a cause of reactivation in different study, and vitamin D supplementation reduces IL-17-producing CD4+ T-cells and effector-memory CD4+ T-cells https://www.jbc.org/article/S0021-9258(20)60573-7/fulltext https://n.neurology.org/content/84/14_Supplement/S38.001 The mechanism of 1,25(OH)(2)D(3) (which is the ACTIVE form of vitamin D) repression of IL-17A expression was found to be transcriptional repression, mediated by the vitamin D receptor (VDR). https://pubmed.ncbi.nlm.nih.gov/21746882/ Problem is more with conversion and availability of the active form of Vit D and proper VDR function compromised by the low zinc/Vitamin A and conversions by magnesium deficiency needed for cytochome P450 enzymes that also can be impacted by chronic inflammation/infection.

 

[Hoosierfans]

brief, during an active infection, perhaps getting calcitriol 1,25-dihydroxyvitamin D3 the active form from a doctor might help rather than the over the counter 25-D which requires magnesium, zinc and vitamin A for conversions and VDR function. Both zinc and Vitamin A can become deficient and less available to utilize during prolonged inflammation/infection and likely why the typical over the counter D doesnt work for everyone for this usage when taken alone.

Ok, I’m totally confused. Someone hopefully can help me out. The “over the counter” form of Vitamin D I have always taken is D3 (whether by pills or patches, and always has some K2 with it).

I now have a script from my doc for 50,000 IUs and it is D2 (1.25 mg capsules) so the opposite of what @datadragon is saying above.

Despite years of supplementing with D3 (again, over the counter via tinctures and patches), I don’t get out of the 20s on my blood levels. And, I have the VDR mutation.

So what should I be doing in this instance? Is the script D2 going to help?

Interestingly over the counter D3 was hard for me to tolerate…couldn’t do any more than 3,000 IUs per day or it woud make my anxiety, skin burning and dizziness worse. But I’m tolerating the high dose D2 just fine.

 

[datadragon]

The “over the counter” form of Vitamin D I have always taken is D3 (whether by pills or patches, and always has some K2 with it).

The "over the counter" form of Vitamin D (cholecalciferol) needs to be converted to calcifediol (25OHD3) which is the form doctors normally measure (which you seem to be ok with your levels), and then converted to the active form calcitriol (1,25-dihydroxyvitamin D3) that uses the VDR for some of Vitamin Ds functions (but not all). Your doctor is able to test the active calcitriol 1,25-dihydroxyvitamin D3 (the active form) at the exact same time that they test calcifediol (25OHD3) as usual by the way to see any issues in conversion at the time of the test. https://www.labcorp.com/tests/081091/calcitriol-1-25-di-oh-vitamin-d and https://www.labcorp.com/tests/081950/vitamin-d-25-hydroxy
https://pubmed.ncbi.nlm.nih.gov/29713796/

Your doctor can also prescribe calcitriol 1,25-dihydroxyvitamin D3 the active form which may be more helpful during active shingles infection for example according to that research since the conversions can be problematic during that time. Zinc and Vitamin A are also needed for the Vitamin D receptor to function properly and those can also be lowered during chronic inflammation/infection so if even the 1,25 form isnt working great by itself in those special cases, those nutrients I'm mentioning can be potentially added as well temporarily which is also new information.

I now have a script from my doc for 50,000 IUs and it is D2 (1.25 mg capsules)

See here, let me know if you still have a question. https://www.healthline.com/nutrition/vitamin-d2-vs-d3#TOC_TITLE_HDR_2

Despite years of supplementing with D3 (again, over the counter via tinctures and patches), I don’t get out of the 20s on my blood levels. And, I have the VDR mutation. Interestingly over the counter D3 was hard for me to tolerate…couldn’t do any more than 3,000 IUs per day or it woud make my anxiety, skin burning and dizziness worse. But I’m tolerating the high dose D2 just fine.

According to the latest research, around 30ng/ml seems to be more of the optimal level for some people, with 20-30 being normal while its looking like there are differences among the population with those who have VDR mutations, get negative effects from D unrelated to turning on immune system, or are blood type A, its possible that your genetics actually favor a much lower level of vitamin D naturally unless you are currently under a severe infection/inflammation/covid state and at least for me, and perhaps also for all blood type A's as I'm finding, just handle inflammation differently which is why we have all those mutations in inflammation pathways and MTHFR mutations etc, and is why I dont always discuss what works for me yet as it may differ a bit for some others.

We are all unique...just like everybody else.

Vitamin D is converted to active form and utilized when you also take magnesium, and helps keep your levels optimal around 30 ng/ml. Magnesium does not continue to raise Vitamin D levels over 30ng/ml but brings them back down when higher back to around that level. Magnesium was found to have a regulating effect, raising and lowering vitamin D levels based on the original starting baseline 25(OH)D levels. In those people who had a baseline 25-D level of 30 ng/ml or below, magnesium supplementation raised up their 25-D level as expected. However, In those who started out with higher 25-D baseline levels starting around 30 ng/ml (75 nmol/L) up to 50 ng/ml (125 nmol/L), magnesium supplementation LOWERED THEIR 25-D levels back down, not raised 25-D levels to even higher levels that some suggest is an optimal level (it appears its not according to many new research findings that needs to be reconsidered). Magnesium regulates vitamin D levels, low magnesium impedes your body's ability to utilize vitamin D, even when it's present or taken by supplementation. Magnesium deficiency shuts down the vitamin D synthesis and metabolism pathways. https://academic.oup.com/ajcn/article/108/6/1249/5239886

 

[heapsreal]

The "over the counter" form of Vitamin D (cholecalciferol) needs to be converted to calcifediol (25OHD3) which is the form doctors normally measure (which you seem to be ok with your levels), and then converted to the active form calcitriol (1,25-dihydroxyvitamin D3) that uses the VDR for some of Vitamin Ds functions (but not all). Your doctor is able to test the active calcitriol 1,25-dihydroxyvitamin D3 (the active form) at the exact same time that they test calcifediol (25OHD3) as usual by the way to see any issues in conversion at the time of the test. https://www.labcorp.com/tests/081091/calcitriol-1-25-di-oh-vitamin-d and https://www.labcorp.com/tests/081950/vitamin-d-25-hydroxy
https://pubmed.ncbi.nlm.nih.gov/29713796/

Your doctor can also prescribe calcitriol 1,25-dihydroxyvitamin D3 the active form which may be more helpful during active shingles infection for example according to that research since the conversions can be problematic during that time. Zinc and Vitamin A are also needed for the Vitamin D receptor to function properly and those can also be lowered during chronic inflammation/infection so if even the 1,25 form isnt working great by itself in those special cases, those nutrients I'm mentioning can be potentially added as well temporarily which is also new information.


See here, let me know if you still have a question. https://www.healthline.com/nutrition/vitamin-d2-vs-d3#TOC_TITLE_HDR_2


According to the latest research, around 30ng/ml seems to be more of the optimal level for some people, with 20-30 being normal while its looking like there are differences among the population with those who have VDR mutations, get negative effects from D unrelated to turning on immune system, or are blood type A, its possible that your genetics actually favor a much lower level of vitamin D naturally unless you are currently under a severe infection/inflammation/covid state and at least for me, and perhaps all blood type A's as I'm finding just handle inflammation differently which is why we have all those mutations in inflammation pathways and MTHFR mutations etc, and is why I dont always discuss what works for me as it may differ a bit for others. We are all unique...just like everybody else.

Vitamin D is converted to active form and utilized when you also take magnesium, and helps keep your levels optimal around 30 ng/ml. Magnesium does not continue to raise Vitamin D levels over 30ng/ml but brings them back down when higher back to around that level. Magnesium was found to have a regulating effect, raising and lowering vitamin D levels based on the original starting baseline 25(OH)D levels. In those people who had a baseline 25-D level of 30 ng/ml or below, magnesium supplementation raised up their 25-D level as expected. However, In those who started out with higher 25-D baseline levels starting around 30 ng/ml (75 nmol/L) up to 50 ng/ml (125 nmol/L), magnesium supplementation LOWERED THEIR 25-D levels back down, not raised 25-D levels to even higher levels that some suggest is an optimal level (it appears its not according to many new research findings that needs to be reconsidered). Magnesium regulates vitamin D levels, low magnesium impedes your body's ability to utilize vitamin D, even when it's present or taken by supplementation. Magnesium deficiency shuts down the vitamin D synthesis and metabolism pathways. https://academic.oup.com/ajcn/article/108/6/1249/5239886

I was already taking 1000iu of vitamin D daily for awhile and tested low. I upped it to 5000iu daily for several weeks and my levels barely moved. I then took 50000 iu of D3 3 times a week for 3 weeks, then for 2 weeks and then once per week and that got it to the high normal range. Now I take 50000iu when ever I remember, maybe fortnightly but also take a combo pill that has a 1000iu vit D in it daily also.

I think I needed the 50000 D3 iu the break through a barrier.

 

[datadragon]

I was already taking 1000iu of vitamin D daily for awhile and tested low.

See the bottom part of my post above, adding magnesium is one thing that the research shows can be helpful for Vitamin D levels rather than taking more of the Vitamin D itself. The main part of the post is just saying that under certain conditions like with shingles, if you are able to take the active form via a prescription that would be seem to be the most effective at that time based on whats in the research.

 

[Hoosierfans]

(cross posted) Hey all — any ideas here? I started Famvir two weeks ago, roughly. First few days of 250 mg 3 x day gave me pretty significant relief from my 9/10 burning pain, dizziness, fatigue etc. Probably 40% overall improvement in my condition (I’m mostly bedboubd).

Then it stopped and hasn’t done much since. All symptoms returned. I’m gonna bump up to 500 mg 2 x day and see what happens.

Interestingly, after I started the Famvir, I got my viral labs back. EBV is reactivated. No active HSV 1 or 2 or Varicella zoster, and IGGs for those weren’t crazy high (unlike EBV IGG which is through the roof).

We started this with the idea that I was having “shingles without the rash” or maybe smouldering HSV-1 (due to the burning pain). I’m seeing different views on whether Famvir hits EBV.

What would you ask from your doc? Switch to something else (like high dose Valgancyclovir or TAF)? Or keep going with the Famvir?

 

[heapsreal]

(cross posted) Hey all — any ideas here? I started Famvir two weeks ago, roughly. First few days of 250 mg 3 x day gave me pretty significant relief from my 9/10 burning pain, dizziness, fatigue etc. Probably 40% overall improvement in my condition (I’m mostly bedboubd).

Then it stopped and hasn’t done much since. All symptoms returned. I’m gonna bump up to 500 mg 2 x day and see what happens.

Interestingly, after I started the Famvir, I got my viral labs back. EBV is reactivated. No active HSV 1 or 2 or Varicella zoster, and IGGs for those weren’t crazy high (unlike EBV IGG which is through the roof).

We started this with the idea that I was having “shingles without the rash” or maybe smouldering HSV-1 (due to the burning pain). I’m seeing different views on whether Famvir hits EBV.

What would you ask from your doc? Switch to something else (like high dose Valgancyclovir or TAF)? Or keep going with the Famvir?

2 weeks is a short time on antivirals, so I'd be tempted to stay on longer. I've found antivirals may not necessarily stop the viruses reactivate but work mostly on stopping the virus replicating ie reactivating being the virus waking up and causing inflammation etc and replicating is growing more of the virus. So antivirals I think stop more of the virus growing mostly, so slowly over time lowers the viral load. Each outbreak should be less and less.
This happened with me when I first started antivirals for ebv/cmv and then the last few years with shingles. With each shingles episodes the severity and eventually the frequency reduced. I think it takes some of us years to get the viral load low enough to a level that our immune system can control it.

You could look at increasing the dose during a flare up as well as something like immunovir to increase nk function. But generally it takes 3 months atleast to notice if someone is a responder to antivirals. I think with you initial improvement is a positive sign, I just think it's going to take time to lower the viral load and you might not be able to fully stop the viruses reactivating but the reactivation will reduce over time.

 

[lenora]

When I had my bouts of shingles the anti-virals were just being introduced and my doctors were wary.

I do know that I used lysine around the clock and that helped, but it's hard to overcome the virus(es). I was bedridden for a good year BUT did recover, albeit with less strength. That was 3 different outbreaks plus a 4th (much easier) some years earlier.

@heapsreal has more experience in using antivirals than I do. Follow his advice and see what others have to offer. And then really think about getting the newest shingles vaccine(s). Two doses about a month apart. I believe it's called Shingrex. I had no side-effects except a sore arm, as per usual. I just hope it works. Are you able to walk to the bathroom? Try building yourself up again....but only if you can. Yours, Lenora

 

[Hoosierfans]

Thanks @heapsreal. That all makes a lot of sense. I definitely am planning on staying on antivirals for the longer term (6 months at least).

I wonder if combining antivirals would be a good idea…or pulsing in another antiviral when my symptoms really flare (right now my baseline is a 7/8 out of 10 w 10 being the worst, but I have a flare every 5 days or so where it hits a 10/10).

 

[heapsreal]

Thanks @heapsreal. That all makes a lot of sense. I definitely am planning on staying on antivirals for the longer term (6 months at least).

I wonder if combining antivirals would be a good idea…or pulsing in another antiviral when my symptoms really flare (right now my baseline is a 7/8 out of 10 w 10 being the worst, but I have a flare every 5 days or so where it hits a 10/10).

I don't think it would hurt to try. I have done similar where I was on famvir regularly and added valtrex for a week during a flare up. But honestly I think just consistency and time is what does it. As time goes on, the flares are not as severe and don't last as long. But I'm all for experimenting. I just kept up the nac for liver health etc and other general supps for all-round health.
Good luck.