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Reoccurring chickenpox and shingles.

lenora

Senior Member
Messages
4,857
I've had shingles 4 times in total.....3 one after the other. Talk about miserable! That word strikes fear every time I hear it.

Have you had the immunization that prevents something like 95% of all attacks. My doctors couldn't make up their minds about whether I should have it, and one day I remembered with full force exactly how miserable that illness is. This was probably 8 years ago, or whenever the new 2 part immunization came into effect.

I've been fine since and can only hope the virus is never activated again. Pure misery. Yours, Lenora
 

Hoosierfans

Senior Member
Messages
395
Ok, so call me shocked. I had an appointment with my allergist / immunologist today (the doc who prescribed IVIG last year) and came away with the following recommendations:

1. Trial of albumin, 1 x week for 4 weeks for hypotension / hypovolemia / POTS

2. Go get the shingles vaccine (thanks all here who suggested it)

3. Talk w my autonomic neuro about doing plasmapheresis, to try and rid my body of all the GPCR antibodies (my doc was up to speed on Prusty’s research and all the docs in Germany doing plasmapheresis / a pheresis for LC, and he even started discussing WASF3 (!))

4. Script for Famvir, 500 mg 3 x day for the “probably smouldering shingles with out a rash”

It's also noteworthy that shingles can occur without a rash too. (https://www.medicalnewstoday.com/articles/321217#_noHeaderPrefixedContent)

Thanks @Treeman for letting me know such a thing exists. It’s exactly what my pain feels like. It’s horrible and 24/7 and all over my arms, legs and face (yeah typically shingles is one sided so this would be a weird presentation).

My doc def believes in the “smouldering viruses” theory and thinks this may be why my pain has been so severe and gone on for 5 years now with no let up.

Let’s hope the Famvir knocks it down, and then insurance let’s me do plasmapheresis for all the nasty antibodies I’ve got swimming around!
 

Treeman

Senior Member
Messages
764
Location
York, England
Good news @Hoosierfans concerning the recommended treatment.

I have been accepted for HELP Apheresis in Germany in the new year (there are waiting lists) however I'm aware that it may not give the desired results if the shingles keeps occurring. I'm presently suffering my second outbreak on 4 months.

. Go get the shingles vaccine (thanks all here who suggested it)

I've been advised not to have this due to a weakened immune system. Or any live vaccine.

My idea is the same as above, knock the virus out and clean the blood of the nasties. Good luck with it.
 

Hoosierfans

Senior Member
Messages
395
@Treeman that’s great news about the HELP a pheresis! I’ll be counting down the days for you!

I can’t remember — have you tried IVIG to boost your immune system? As I understood your post, you’ve been treating mostly w acyclovir? Or have you been using Famvir as well?
 

Treeman

Senior Member
Messages
764
Location
York, England
@Treeman that’s great news about the HELP a pheresis! I’ll be counting down the days for you!

I can’t remember — have you tried IVIG to boost your immune system? As I understood your post, you’ve been treating mostly w acyclovir? Or have you been using Famvir as well?

I'm on scig, so yes, but it's still not helping me. It's a low dose (0.37g/Kg)(although my IgG is now within the normal range) but I think the persistent virus are just not been held at bay by the treatment.

I'm attempting to get an increase in my dose, but it will be a big challenge.
 

lenora

Senior Member
Messages
4,857
Just make sure you're as healthy as possible when you go for the shingles vaccine.

Shingles is easily transferred from one body part to another....so be careful. I was bedridden for a year. Not much fun as it was truly miserable. Yours, Lenora
 

Hoosierfans

Senior Member
Messages
395
I'm on scig, so yes, but it's still not helping me. It's a low dose (0.37g/Kg)(although my IgG is now within the normal range) but I think the persistent virus are just not been held at bay by the treatment.

I'm attempting to get an increase in my dose, but it will be a big challenge.
Dang! Wish it was helping more. I did high dose IVIG last year for 9 months and it didn’t help (1.5 g / kg). My doc said that he sees 30% of patients respond to IVIG, 30% respond to antivirals and 30% respond to plasmapheresis / Rituximab…..so I’m hopping like you that if I combine the antivirals w something that clears the blood (hopefully plasmapheresis but I could also revisit IVIG in combo), that that will be a winning combo. 🤞🏻🤞🏻🤞🏻
 

junkcrap50

Senior Member
Messages
1,321
My sibling has been real sick the past 4-5 weeks with shingles and simultaneously with several other infections: bad HSV1 outbreaks, chest rash, yeast infection, and shingles. All while already being on 1g valacyclovir 2x/day as a cold sore prophylactic! Just finished a medical residency, really burned out, and taking several months off. Put on Famvir for 2 weeks, but hasn't done much for shingles or cold sores, so is going to be on it for 2 more weeks. (I'm aware of genetic resistance to acyclovir for VZV & HSV, but my ID/CFS specialist said it's very rare, so doubtful to get any action/change of drugs.)

I am very, very worried - petrified really - about sibling getting ME/CFS from this month of infections. Sort of / maybe already has it as mild from covid vax injury. Of my family of 4, two (me and parent) are pretty much disabled from ME/CFS. 3rd family member (other parent) decades ago had ME/CFS for just over 1 year after mono but cured/in remission ever since. (Cured self with going to gym & exercise, oddly - so maybe not true or long term me/cfs but met criteria). Just can't have 3 family members so sick with ME/CFS as it already feels like illnesses is having it falling apart.

I need to and will make a new separate thread about my sibling to see if anyone has advice and what else to do, on top of everything my knowledge/experience and what we're doing (extreme rest, immune supplements, high dose vit C & D, peptides, antioxidants, NAD+, Rx meds).

Does shingles just take a very long time to get over?
Briefly, anything to help avoid developing ME/CFS?
 

Treeman

Senior Member
Messages
764
Location
York, England
There's a relatively new shingles vaccine on the market called Shingrix. It doesn't contain any live viruses and is more effective than previous shingles vaccines.
I've asked my immunologist if it's a live vaccine (the new one you mention) and can I have it. He said no, but it appears they don't really know. This is what I'm up against sadly.
 

Hoosierfans

Senior Member
Messages
395
@junkcrap50 — I had seen your other messages about your sibling. I’m so so so sorry. I know you’ve pulled out a lot of tools in your arsenal. 👍🏻

My doc put me on Famvir 500 mg 3 x day, which is on the high end of what I’ve seen prescribed. It seems to be the better of all the antivirals for getting into the peripheral nerves.

Other recommendations I’ve seen — ALA, B1 (both for nerve health / pain). Depending on the level of pain / distress, consider pain medications like lyrica, gabapentin, Tramadol, some of the anti-epileptic classes of meds. I HATE all these meds bc of their side effects and possibility of dependence, but it’s important to try and fend off a “chronic pain cycle” getting started and taking root. So worth a short term use to fend that off. IV ketamine could also be helpful (and not addictive, less side effects). LDN of course.

Topical stuff to help calm the pain and recenter the nervous system — cold baths, ice packs, breathwork, grounding, gentle yoga, nerve flossing, vagal nerve stimulation. Whatever feels good and soothing to the nervous system will also help that pain cycle not take root. A “big gun” tool in that toolkit is Stellate Ganglion Blocks.

Weirdly the suggestion here for taking calcium seems to be helping me the past few days.

I’m sure I can think of more but for now that’s what I’ve got.
 

Treeman

Senior Member
Messages
764
Location
York, England
Dang! Wish it was helping more. I did high dose IVIG last year for 9 months and it didn’t help (1.5 g / kg). My doc said that he sees 30% of patients respond to IVIG, 30% respond to antivirals and 30% respond to plasmapheresis / Rituximab…..so I’m hopping like you that if I combine the antivirals w something that clears the blood (hopefully plasmapheresis but I could also revisit IVIG in combo), that that will be a winning combo. 🤞🏻🤞🏻🤞🏻

I've been ill a long time and according they say even with immunoglobulin it will take a long time to recover.

I did start to see some improvements after about 4 months but then I caught a infection and it knocked me back. I'm still in that poorer situation at month 8 of immunoglobulin.
 

Hoosierfans

Senior Member
Messages
395
@junkcrap50 if you want me to put you in touch with an awesome stellate block doc, I can. He’s happy to chat by phone or text with patients and is UNBELIEVABLY caring. He’s had a lot of success in long COVID patients and some in ME — basically he told me the shorter time sick the better luck he’s having with SGB helping. Since your sib is just a month in, it might be a great time to do that and try to head off me/CFS at the pass….
 

Treeman

Senior Member
Messages
764
Location
York, England
need to and will make a new separate thread about my sibling to see if anyone has advice and what else to do, on top of everything my knowledge/experience and what we're doing (extreme rest, immune supplements, high dose vit C & D, peptides, antioxidants, NAD+, Rx meds).

I'm I'll with ME/CFS and hypogammaglobulinamie. My daughter is the same and my wife has long covid with a ME/CFS diagnosis.

The NHS has genetically tested us and I'm waiting for the results (it's been 11 months now!)

I think if you were seeing my consultant they would consider there is a family genetic thing going on.
 
Last edited:

Violeta

Senior Member
Messages
2,843
My sibling has been real sick the past 4-5 weeks with shingles and simultaneously with several other infections: bad HSV1 outbreaks, chest rash, yeast infection, and shingles. All while already being on 1g valacyclovir 2x/day as a cold sore prophylactic! Just finished a medical residency, really burned out, and taking several months off. Put on Famvir for 2 weeks, but hasn't done much for shingles or cold sores, so is going to be on it for 2 more weeks. (I'm aware of genetic resistance to acyclovir for VZV & HSV, but my ID/CFS specialist said it's very rare, so doubtful to get any action/change of drugs.)

I am very, very worried - petrified really - about sibling getting ME/CFS from this month of infections. Sort of / maybe already has it as mild from covid vax injury. Of my family of 4, two (me and parent) are pretty much disabled from ME/CFS. 3rd family member (other parent) decades ago had ME/CFS for just over 1 year after mono but cured/in remission ever since. (Cured self with going to gym & exercise, oddly - so maybe not true or long term me/cfs but met criteria). Just can't have 3 family members so sick with ME/CFS as it already feels like illnesses is having it falling apart.

I need to and will make a new separate thread about my sibling to see if anyone has advice and what else to do, on top of everything my knowledge/experience and what we're doing (extreme rest, immune supplements, high dose vit C & D, peptides, antioxidants, NAD+, Rx meds).

Does shingles just take a very long time to get over?
Briefly, anything to help avoid developing ME/CFS?
I had shingles in 2017, was in bed for 2 1/2 months, thought I was going to die and didn't care if I did.

Still dealing with postherpetic neuralgia, and just the past few days it is lessening.

Let me know if your sibling is having trouble keeping food or water down, there's a homeopathic remedy for that.

This is from a Dr Aziz:
Grapefruit seed extract (GSE) has been used historically for bacterial, viral, and fungal infections including yeast infections. Initially discovered as an anti-parasitic back in the early 1900's it was then researched for its ability to preserve and protect fruits and vegetables as it inhibited not only parasitic infection but also fungi and bacteria. GSE has since been reported to protect against a broad spectrum of bacteria and may inhibit many types of fungi and yeast.

(I put it in a capsule, it doesn't taste good)

I put some essential oil in the capsule with the grapefruit seed extract.

(I use a combination of organic essential oils that I bought on Amazon.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5628516/

To get serious about the yeast infection, which really harms the immune system, something like Interfase Plus by Klaire labs helps break down biofilm so that antifungals work better.


Yeast infections rob the body of zinc, it's good to supplement zinc.

There were some foods that I have to stay away from, chicken and eggs, strangely enough (shingles virus is from "chicken pox") being the most important, but also chocolate.

The yeast causes production of acetaldehyde, which goes to the brain, causes lots of problems.
Xylitol and tea break it down. There are a few other things, too, but I would have to go to my notes, if you are interested.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,076
Location
australia (brisbane)
Most people who have read my threads know that I think viral stuff is the main driver in my cfsme. Especially varicella/shingles and cmv. But I think with myself and possibly others, there's ongoing bacterial infections maybe lyme, maybe coinfections of lyme or the coinfections in lyme like mycoplasma can come seperate from lyme but I believe they can add extra strain to the immune system.

The end of last year, the last 6 months and until April this year, I was having reoccurring shingles every 3 weeks or so, even though I was on antivirals, but I believe the antivirals did reduce the severity.

My last shingles episode was April so it's been a long 'remission' of the shingles for me. I think what has initially helped was doing a course of cycloferon. This increases your natural interferon and this increases your nk function. I think this probably helped any viral or bacterial stuff I had going on. I did this for a couple of months.

I then started on an antibacterial/lyme type of a protocol with a couple of different antibiotics as well as herbals that are used in lyme and its coinfections. I alternated between different antibiotics and herbals. I'm now just using 1 antibiotic and several herbals.

I think this antibacterial treatment has taken the strain off my immune system and with the antivirals, has kept the shingles away. My migraines have reduced, probably because of reduced shingles flares which are on my head, so the migraines are probably a sort of post herpetic neuralgia.

The herbs I have been using are typical herbs used in lyme and I just rotate several in and out every couple of weeks since June as well as a few antibiotics eg doxycycline, roxithromycin, bactrim, flagyl. The herbs Serrapeptase for helping break down bacterial biofilms, cryptolepis, grapeseedextract, artemesia, Japanese knotweed. Again I don't take them all at once but rotate them in and out generally 1 antibiotic and 2 herbals currently.

I'm not superman but we are in the process of selling our house and moving 16hrs north of where we are now. It's cheaper place to live so we should be debt free, one of our main reasons. So cleaning up our yard, which is like a rain forest and I had 3 weeks leave off work and went hell for leather loading my trailer for of general rubbish and garden rubbish and taking it to the dump etc. I lost count how many times I went to the dump. At the end of the day I was tired and sore but not cfs exhausted and didn't crash. A couple of times I had to have a day to chill but I think that's probably normal. Last year this would have been impossible.

The other thing that's helped me improve aswell is losing 30kg simply by stopping lyrica and changing over to toprimate for migraine prevention. Lyrica is a good drug for nerve pain but long term you really have to weigh up the side effects of the wt gain and for me it didn't matter how strict I ate, the wt climbed up slowly. I still use it very intermittently if I feel a migraine type headache coming on and will club myself with it, but it's not very often.

That's my current uptake on things and it seems to be controlling the reoccurring shingles and avoiding big cfsme crashes.

Cheers👍
 

lenora

Senior Member
Messages
4,857
About 10 years ago, I developed shingles, wretched shingles with one outbreak following another. I had 3 altogether.....and a 4th one when I was in my early 40's. I found the first outbreak wasn't as bad as subsequent ones.

Yes, it's miserable and just about drives you out of your mind. Let's just say there isn't much of your mind left when it's over. My doctors were undecided as to whether I should have the Shingrex vaccination, but one day I went into a grocery store pharmacy and had the first of two immunizations. I haven't had anything since and I had no side-effects whatsoever. It's difficult. Shingles eft me bedridden for about a year, the rash just about drove me insane, most doctors couldn't recognize it and finally I found relief in a cream purchased through a compound pharmacy (with a prescription). While it didn't erase the effects, it did help. I still suffer from post-herpetic problems as a result of the outbreak(s).

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. I hope everyone can take advantage of the vaccine....it would save a lot of heartache and ongoing pain for those who are willing. Sure, there will always be "stories of what didn't work." But I honestly feel this is one that we should try for ourselves. If nothing else, we've done everything possible. It doesn't sound like much, does it? Just try living with it. Yours Lenora
 

Treeman

Senior Member
Messages
764
Location
York, England
hope everyone can take advantage of the vaccine....it would save a lot of heartache and ongoing pain

What the immunologist found with me was that I have an initial good response to vaccines but that response soon disappears.

So it would possibly only provide me with a short term protection.
 

Violeta

Senior Member
Messages
2,843
I haven't had an outbreak since 2017, but I do have postherpetic neuralgia intermittently during every day.

Every now and then, especially if I eat chicken or eggs, I get one or two small spots of shingles along the same nerve (my face 😣)

I got the Novavax vaccine this past Tuesday and have been having a bit more pain and one spot as of yesterday.

I am not regretting getting the vaccine, but I think it's interesting that it can make postherpetic neuralgia and worse and even make shingles return in an every so slight way.

When my daughter had COVID in August of this year, I didn't get COVID but I did get a couple of days of the same symptoms as when I came down with shingles.