The Chickenpox & Shingles Poll

[erin]

I had chicken pox aged 35, it was horrendous. I thought I was dying. Never got back to normal since then. I'm still sick and exhausted.

 

[Sushi]

@Sushi - I hope it clears up quickly.....

Thanks! It is clearing, hopefully it will be gone in a few more days. I started taking Valtrex within 24 hours and that probably was important.

 

[Sushi]

Many people find that Tagamet (cimetidine) is more effective against herpes infections, but it crosses the blood brain barrier, and consequently has greater side effects. I tried it once and had a negative reaction to it and had to stop it, but the reaction to it dissipated within hours.

Poking around in my home pharmacy, I also have some Tagamet. Maybe I'll try taking it after finishing the Valtrex? I didn't take many tabs out of the box, so I probably reacted to it too. Don't think I could tolerate 2 drugs at once that I am reacting to. Thoughts?

 

[Hell...Hath...No...Fury..]

I had chickenpox aged 11. No shingles yet.

Just thinking of childhood stuff, I had a strange 'virus' when I was 8 that was never named or diagnosed as we were on holiday at the time so had to see the holiday camp GP, who said it was viral.

I woke up one day, no pain that I remember but one half of my body was pretty much paralysed and my leg would drag when i walked. I could only half smile. I still managed to play table tennis with my good arm.
I think I went back to normal after a few days. Never found out what is was or what caused it.

 

[zzz]

Poking around in my home pharmacy, I also have some Tagamet. Maybe I'll try taking it after finishing the Valtrex?

That sounds to me like a reasonable thing to do if you're still having symptoms at the end of the Valtrex treatment. In general, antivirals have their biggest effect against shingles the closer they're taken to the start of the outbreak. Due to your (probable) reactions to both drugs, I would think that simply sticking with Valtrex for the main course of treatment is the way to go, as the efficacy of Valtrex in shingles treatment is much better established. This means that any effect from starting Tagamet after a week would probably be minimal at best, but I agree with you that it doesn't sound like a good idea in your case to take both Valtrex and Tagamet at the same time.

The post-herpetic neuralgia that typically accompanies shingles comes from damage to the nerves by the virus. The early antiviral treatment, such as in your case, minimizes this damage, and the nerves typically are able to heal completely. It sometimes can take a while, though. In my case, even though I started acyclovir within a day of the rash's appearance and took it for a week, I had nerve pain that lasted for several weeks. By the end of this time, the nerve pain had completely disappeared, though, and it did not return. Some people have this nerve pain for much longer, or even for life, but in general, these are cases where the start of antiviral treatment was delayed.

 

[Sushi]

The post-herpetic neuralgia that typically accompanies shingles comes from damage to the nerves by the virus. The early antiviral treatment, such as in your case, minimizes this damage, and the nerves typically are able to heal completely. It sometimes can take a while, though. In my case, even though I started acyclovir within a day of the rash's appearance and took it for a week, I had nerve pain that lasted for several weeks.

Did you have pain immediately with the onset of the rash? I only had mild pain for one day. Haven't had any since though there is a bit of itching but that may be from the rash drying up.

 

[zzz]

Did you have pain immediately with the onset of the rash?

Yes, I did.

I only had mild pain for one day.

It sounds like you were very fortunate.

Haven't had any since though there is a bit of itching but that may be from the rash drying up.

Yes, the itching is normal and should go away quite quickly with the rash. It seems like you had a rather mild case of shingles, and I would think that the week of Valtrex should be quite sufficient to treat it.

 

[MeSci]

I had chickenpox aged 11. No shingles yet.

Just thinking of childhood stuff, I had a strange 'virus' when I was 8 that was never named or diagnosed as we were on holiday at the time so had to see the holiday camp GP, who said it was viral.

I woke up one day, no pain that I remember but one half of my body was pretty much paralysed and my leg would drag when i walked. I could only half smile. I still managed to play table tennis with my good arm.
I think I went back to normal after a few days. Never found out what is was or what caused it.

Chickenpox aged 5, immediately followed by apparent Bell's Palsy which left one side of my face paralysed. No shingles (yet).
And I just found that I posted this in 2015!

 

[Hell...Hath...No...Fury..]

Chickenpox aged 5, immediately followed by apparent Bell's Palsy which left one side of my face paralysed. No shingles (yet).

The GP we saw said what I had was like Bells Palsy but because the whole body was affected instead of the face, he ruled it out. I still wonder though

 

[Valentijn]

The GP we saw said what I had was like Bells Palsy but because the whole body was affected instead of the face, he ruled it out. I still wonder though

Temporary hemiplegia can probably have several different causes. But it's also a symptom of a mitochondrial disease, MELAS.

 

[NelliePledge]

I had been exposed to chicken pox as a young child when my baby brother had it but I didn't. Then age 28 around 3 weeks after I'd had a bad gastroenteritis I caught it. I was covered in spots and couldn't sleep for discomfort they caused. Worst thing I'd had until ME I'm in my 50s now but not, to my knowledge, had shingles. I'd never heard of internal shingles that sounds quite scary. I didn't start getting mild ME symptoms until early 40s only diagnosed early 50s. But I feel this point of gastro plus chicken pox was a big factor. I later went through a hugely stressful period with both parents ill one died when I was 40 then the other had severe dementia for 12 years. my parent's dementia was like a permanent grief that only lifted 18 months ago when they died.

Unfortunately I'm in the uk I haven't had any viral tests so no knowledge about whether I might benefit from antivirals. I could go private but don't have the confidence as I've heard the costs can quickly rack up. I take lysine and olive leaf for their antiviral properties as I have a feeling this is important. I get the sore throat swollen glands symptoms with ME when my symptoms are worst.

 

[tudiemoore]

Had Chicken Pox as a child. It must have been rather mild as the only thing I remember was the strange, to me then, of exposing other children to it!
I had shingles in my sixies--also mild but scary. Started at my hairline, just over my eye but progressed very little. I immediately went to my doctor and had meds and a regimen which seemed to have treated it well. (Don't remember what this included!)

 

[PeeWee]

My partner Elle had chicken pox as a child. As an adult, the onset of her cfs was an illness & rash diagnosed as shingles by a number of medical professionals & treated with Acyclovir. Then the illness & rash returned again & again. The 5th time the rash appeared our doctor said it couldn't possibly be shingles & refused to prescribe Acyclovir - subsequent rashes were bigger & more frequent, which led us to believe the antiviral had acted on the illness, whatever it was. Now, just over 3 years later, Elle doesn't have rashes anymore, but the cfs remains.

 

[heapsreal]

Zantac ive found helps reoccurring shingles but i also up my famvir when it happens. The research on zantac i think said that it works on shingles as it blocks the effects of T suppressor cells and allows more T cells to fight vzv. From what i can recall???

Pain management is suppose to also help reduce the incidence of PHN.

Might be important to keep an eye on blood pressure as there is an increased risk of stroke within the first 30 days after shingles outbreak. My initial shingles episode shot my bp up very high for several months. I stayed on bp meds for about 12 months. This could also be because shingles was on the side of my head??

 

[MeSci]

Pain management is suppose to also help reduce the incidence of PHN.

I had to look that up - post-herpetic neuralgia.

 

[anni66]

me too! good to meet someone else 'special'

My daughter had chickenpox at 4 and shingles at 9. Glandular fever trigger

 

[heapsreal]

I had to look that up - post-herpetic neuralgia.

Also a condition called mollarettes meningitis which is a chronic form of either varicella the shingles virus or herpes 1 virus. Read up on these and they sound very similar to cfsme, possible that mollarettes is a sub group and quite possible that ebv, cmv etc cause a mollarettes types of condition.

Very hard to get diagnosed with mollarettes meningitis as a lumbar puncture is required and quite often a person has had several of these over the years before the viruses are found in the spinal fluid. The treatment is antivirals.

Many doctors ignore the fact chronic viruses exist outside of hiv and hepatitis but mollarettes is essentially a chronic form of shingles or viral infection. Im sure most drs have never heard of mollarettes.

 

[Sushi]

Many doctors ignore the fact chronic viruses exist outside of hiv and hepatitis but mollarettes is essentially a chronic form of shingles or viral infection. Im sure most drs have never heard of mollarettes.

One of my doctors is giving me LDI (low dose immunotherapy) for varicella to try to prevent post-herpetic neuralgia.

 

[MeSci]

One of my doctors is giving me LDI (low dose immunotherapy) for varicella to try to prevent post-herpetic neuralgia.

Yikes - a website on Mollaret's Meningitis

http://www.mollarets.org/mollarets-meningitis-info.html

gives the following info:

"Dr. Jon Stone, the leading expert on FND stated, "Any neurological disease, including Mollaret's is a powerful risk factor for FND - I have seen FND co-existent with all types of neurological disease.". If you have medically unexplained symptoms along with Mollaret's, you can get more information about FND here and ME/CFS here."

The first link is to a scary, weird site that I have commented on here before.

Here seems a more sane site: https://academic.oup.com/cid/article/43/9/1194/425988/Recurrent-Benign-Lymphocytic-Meningitis

 

[heapsreal]

@MeSci
Mollarettes is something i have seriously considered i have as my cfs started with chickenpox at 31yo after having chickenpox as a child. I wonder if alot of my symptoms since then is varicella sine, which is basically shingles but without a rash.

What i thought was strange was that when i explained my brain fog to other cfsers id say that it feels more foggy on the left side of my head which most thought was strange. 2015 and 2016 when i had 2 biggish shingles eposodes and was when i stopped avs temporarily, it was on the left side of my head where the brain fog feeling has been. Between the 2 episodes i had multiple smaller shingles outbreaks on the left side of my head but not as bad as was on the antivirals.

Meningitis its common for blood pressure to go up significantly, which mine did shortly after the first shingles rash outbreak in 2015 and was 190/120. I stayed on bp meds for 12 months and now its fine. Even now i have these left sided headache episodes that floor me and headache pills dont help. But i find increase my av dose, adding lysine and zantac which sorts it out within 2 to 3 days if i catch it early. Usually leaves me drained for a few more days.

Probably explains why i feel alot better on antivirals and why many blood tests show i have some sort of ongoing infection. Maybe very similar to dr lerners ebv patient group??

Also not uncommon to find cfsers who's onset was chickenpox or shingles and probably many who have the rashless shingles/herpes sine?? Varicella virus is not often mentioned in cfsme as much as many other viruses.