You only get shingles once????

[heapsreal]

Hope you can get what you need @heapsreal . I have no idea how to get any immunoglobulins tested any more. I guess I could beg my GP but she will just look at the guidelines from Aus. and say 'I can't get them,' most likely.

If they come back low, I guess that evidence for if I see a specialist and probably further testing and maybe ivig. I think it's too far above a GP's pay grade to prescribe ivig. My last plan than is to do a course of valcyte but the cost is becoming further out of reach as the Aussie dollar which was 70cent US there abouts but now it's around 60cents in the US dollar. The generic valcyte I can buy is in usd so it will cost that bit too much. Generic tab is 7usd each so that's $11 a tab in Aussie dollars, struth it's giving me the , but.....

 

[vision blue]

My sores are back on my head today. Three in a cluster. Onlt been a couuple weeks since they had cleared up. When i push on them, sends odd waves of pain and funny sensations in head. Guess its way ive been extra dizzy last week or so. Sometimes when the sorres surface, I feel better. Not always tho. Didnt realize i was brewing another this time- just resigned myself to feeling dizzy daily

@heapsreal ok on testing but i thought you said you have the swabs at hone now so youll be ready

 

[heapsreal]

ok on testing but i thought you said you have the swabs at hone now so youll be ready

I have a swab at home now to try and catch it. Dr gave me the swab and an authority form to handover to pathology when ready.

That sounds similar to my experience where I feel unwell, headaches etc than I get the sores/rash which lasts about 5 days and once I feel better.

 

[heapsreal]

I got some blood work results today. It's probably the best it's been in 20yrs. Strange as I've eaten the unhealthiest diet this year, been ultra inactive due to the headaches and knee injury and I have felt worse in the past but not by much.

A few things suprised me. My cholesterol was lowest it's ever been. My neutrophils although within normal range were the highest I've seen them. My lymphocyte T cells were all good other than cd8 which was 1 point out of range. Immunoglobulins were all normal. I see my dr in a few days.

I initially relapsed just as covid hit in 2020 and my antiviral famvir wasn't available. Had a weird constant headache for 3 months. Had several shingles rash type episodes with worsening headaches. I have been constant with famvir for atleast 12 months. I can't get viral titres tested but going by my immune markers I think ebv and cmv are probably suppressed for now.

The shingles/sores/rash I get on my head I think it's shingles but not 100%. Thinking if I wasn't on antivirals maybe the shingles rash would be worse. The only way I'm going to confirm it is if I catch it early and swab a pustule. Sometimes I get the same pain in my head but don't get a rash. It's possible it's just chronic herpetic neuralgia causing the headaches. So my fatigue may not really be cfs but fatigue etc from nerve pain.

Next step, treat the nerve pain which we have been trying for 2 years. Antidepressants, anticonvulsants to prevent pain and traditional pain killers if needed, plus ice packs etc. Really only the pain killers help and or I jack the lyrica up high for a day.

About 2016 I had a different dr who is now retired. He was sports dr and use to doing Cortisone shots etc. One day I had enough of the pain and asked for Cortisone shots in my head with lignocaine and he was happy too. Probably 4 or 5 shots in my head over the area where the shingles were. It was painful but the lignocaine numbed it quite quickly. I think this help the nerves alot and reduced the inflammation . The effects lasted months. My current Dr won't do this and he doesn't know who he could refer me too. I might just plead with my dr to do it.

I had 2 good years before 2020 when everything went south.

 

[vision blue]

I have a swab at home now to try and catch it. Dr gave me the swab and an authority form to handover to pathology when ready.

That sounds similar to my experience where I feel unwell, headaches etc than I get the sores/rash which lasts about 5 days and once I feel better.

Thanks for clarification did hecalso give you a vial to put it in? Is the swap wrapped up/sealed and does it have a manufacturer nane? what does it lok like? Also, does the order form he gave youvsay zoster PCR?

interesting same type of symptom pattern. Too wiped out to type more now

 

[heapsreal]

Thanks for clarification did hecalso give you a vial to put it in? Is the swap wrapped up/sealed and does it have a manufacturer nane? what does it lok like? Also, does the order form he gave youvsay zoster PCR?

interesting same type of symptom pattern. Too wiped out to type more now

Here's a pic of the swab and container it comes in etc. The request form says viral pcr swab. I guess not only varicella but also hhv1/2 and other common viruses that cause a rash.
As far as varicella virus all I can really do is famvir. Going by the lymphocyte testing I don't have any systemic viral issues, which is probably controlled by the famvir. Next is to controll the inflammation and nerve pain, which is going to be hard.

I was on 300mg lyrica twice a day which helped alot with the pain and slept like a baby. Problem was I was putting weight on faster than a new born baby and appetite wasn't really effected so must do something to metabolism. I was on 150mg lyrica at night and take extra if needed but basically on 150mg morning and night. Also trying zoloft but only on 25mg, if I go higher I can't sleep, so can't tell if zoloft at a proper dose would help. I may try Duloxetine again.

Honestly I think it could be sorted with Cortisone shots in the area. Medication wise I'm just going around in circles. One more thing I could try but is pricey here is botox, which is used for nerve pain.

Last whinge, but the one neurologist I saw was an absolute bitch and now I know why she has a short waiting list. All the other neurologist had 18month waiting lists. But I know what I need and that's an injection in my head/scalp.
I'm extremely tempted to rig up something myself.

 

[Judee]

Another thing to research is red marine algae. It's supposed to help with shingles as well. I think it may have a high iodine content though so I'm guessing that could affect sleep cycles. Anyway, just something to be aware of.

Of course this page has ads so not sure about the info: https://www.water-for-health.co.uk/our-blog/2017/11/red-marine-algae-for-hpv-and-other-viruses/

Another one with ads: https://www.taoofherbs.com/articles/130/redmarinealgea.htm

Maybe you could mix this in with your shampoo as well??? (Just a thought.)

I find small amounts of Ginkgo help with me with neuropathy, tinnitus, and tremors. Maybe it would help you with nerve pain???

 

[heapsreal]

This crap is happening so frequently. I have a couple of days of headaches and more often getting pain in my lower ribs that rap around from the front, around the left side to my back. No rash or anything just pain. After a couple days of this the spots come out on my head on the same spot as the pics at the beginning of this thread. The rash isn't overly itchy but headaches more painful that side but whole head if buggered. Spots/rash last about 5 days.
I have the swabs here to swab a pustule but because it's in my hair the spots don't seem to progress into pustules. Not that it's going to change treatment, just convince my Dr abit more that it's varicella. He hasn't given me any alternative of what it could be. The antiviral cream stops the spots getting bigger and turning into a big rash.
So I just up my famvir to 500mg x4 for a few days. Recently been using ranitidine when spots appear, suppose to increase the life of T cells to fight varicella. Then just pain meds and extra lyrica etc.
I don't normally track everything when it happens but since September I've written down the date when the spots occur.
25th Sept
5th October
4th November
18th November
3rd December
I'm not sure the virus is actually getting suppressed as headaches are constant and intensity increases during those couple of days before the spots come out and when spots are gone, headache intensity is reduced.

 

[pattismith]

I currently have Herpes recurrence once a month for 4 months (HSV), but I couldn't say if it can happen with varicella.

You said your CD8 are out of range, are they low or high?

 

[heapsreal]

I currently have Herpes recurrence once a month for 4 months (HSV), but I couldn't say if it can happen with varicella.

You said your CD8 are out of range, are they low or high?

Cd8 still high, just out of range.

 

[pattismith]

Did you check if your scalp rash follows any scalp dermatome?

Shingles (adam.com)

Cd8 still high, just out of range.

and did you get a test for IgG subclasses, IgA? Herpes recurrence often comes with some immunodeficiency...

 

[Treeman]

headaches more painful that side

Have you been checked for neuralgia?

 

[heapsreal]

Did you check if your scalp rash follows any scalp dermatome?

View attachment 50073

Shingles (adam.com)


and did you get a test for IgG subclasses, IgA? Herpes recurrence often comes with some immunodeficiency...

All my subclasses were fine.

 

[heapsreal]

Have you been checked for neuralgia?

I saw a neurologist and before I walked in the door and sat down she just said oh I've seen your type, I bet 100% it's chronic migraine. She was a cow. I didn't really get a chance to talk. My wife was with and when we walked out, she turned to me and said what a bitch. I was still blown away, trying to process everything. My main thing I wanted from it was an mri. It shows white matter lesions and an empty Sella. I never went back to her. All other neurologists have 18month long waiting periods. I now understand why this one only had 3 month waiting period because nobody goes back for the 2nd consult.

These legions I believe a present in migraines,infections, MS, other autoimmune conditions etc. My gp said then that we need to keep your BP down and cholesterol down. That was about.

I'd say some of my headaches are post herpetic neuralgia but when rash is present it seems like the virus is actually reactivating. I've thought about the zoster vaccine but my igg levels say they are high and I have good protection against shingles. This was in 2015 before I had shingles and was looking at stopping antivirals. Several days after stopping antivirals I got my first shingles episode.

I'm at a loss as to what else to do.

 

[heapsreal]

Did you check if your scalp rash follows any scalp dermatome?

View attachment 50073

Shingles (adam.com)


and did you get a test for IgG subclasses, IgA? Herpes recurrence often comes with some immunodeficiency...

The dermatone that looks like it effects me is V3.

 

[lenora]

@heapsreal.....High doses of lysine are good for herpes. My husband has problems frequently and has found lysine better than many of the meds and ointments prescirbed by his doctor.

Also, have you gone to a dermatologist? You may get an answer there....although getting proper diagnoses can be difficult. Anyway, it's another avenue.

Your body should have lysine around the clock. I had the shingles vaccine about 2 years ago.....I haven't had problems with that since (but I'll be forever frightened of them). Still, the vaccine was given as two injections over a month or 6 wks. Somewhere in that time.

Good picture of dermatomes @pattiesmith. We should all be aware of them and which parts of the body are affected. Medicine is tough. So many disease and trying to figure things out is simply not that easy. Lenora

 

[pattismith]

@heapsreal.....High doses of lysine are good for herpes. My husband has problems frequently and has found lysine better than many of the meds and ointments prescirbed by his doctor.

I found lysine very efficient to prevent HSV1 reactivation, but I don't think it works against HSV2, Zoster nor EBV.

 

[heapsreal]

I found lysine very efficient to prevent HSV1 reactivation, but I don't think it works against HSV2, Zoster nor EBV.

That's my experience with varicella. Lysine didn't help me at high doses throughout the day.
Was someone similar on FB and she eventually found someone to help. She got IV acyclovir and it out her into remission for last 2 years. No hope in hell getting that in Australia where everything is tightly controlled by the govt and drs don't practice medice and only follow govt guidelines.

 

[lenora]

When I had shingles, I was bedridden for a year, not a few months. Mistake on my part to have written that info.

This was before the anti-virals were used....so lysine was one of the methods I tried. I did take it round the clock, it interfered with my sleep but so did the shingles themselves.

I can only remember that I used any product with lidocaine in it. They've now increased the amount of that to 4% in things like Aspercreme and other products. I used sprays, roll-ons....and my neurologist had prescribed an ointment made by a compound pharmacy. Use Ivory soap for bathing and washing your hair. Allergies are made much worse. Rinse all sheets twice....it may help.

I was terrified of hearing even the word "shingles" and on my own (b/c doctors could decide b/c of cysts in my spinal cord....but it was spur of the moment at my drugstore and it has been just fine. No reappearance of the shingles and yes, I still have pain from having had them. Do whatever you can to avoid those things....people have no idea how bad the illness can get.

Sorry that lysine hasn't worked on the varicella. Yours, Lenora

 

[lenora]

Hi @pattismith. I can't find my reference to having shingles only once but, of course that isn't true. I've actually had them four times. Now we can mistakenly spread them ourselves if we aren't aware of the early signs.

I do know that I never want to deal with that illness again. You lose your mind! Yours, Lenora