You only get shingles once????

[heapsreal]

So they say???
I don't always get a rash or maybe a very mild rash on the left hand side of my head. It's been increasing and probably getting it monthly.
The last few I took some pics, some are hard to see because of my hair. I also get that MS hug type pain as well as bad headaches and increased lethargy.

Looking at the dates on the pics, I just finished a shingles episode on 13 Aug. Then an episode on the 25 Sept and rash resolved probably within 5 days as always on antivirals. The current episode started about 5 October and upped the famvir to 500mg 3 times a day for a few days. Currently the 9th Oct here and rash almost gone, headaches and lethargy present but eased alot. This episode my eyes have gone from one day being very watery to the next day dry as the Sahara.
I will attach pics here from 5/6/7th Oct.

 

[heapsreal]

So my dr always says it can't be shingles, although of recent times only had pics at the very tail end of the infection.

I see my dr tomorrow and need more meds for headaches but see his reaction to the pics. But I want to get the basic full blood work, lymphocyte subset tests, immunoglobulin testing which I haven't had for years. I have a connection with a phlebotomist and try and get some viral titre testing done for cmv, and maybe ebv if it shows up. Titre level testing almost impossible to get here. Hopefully more evidence these infections are chronic.

I don't think my gp will be comfortable prescribing me valcyte but will tell him I want all the tests done so I can see my old cfs dr and show him and get a prescription for valcyte/valgan which I will get online but always a danger of customs nabbing it, but due to the cost, having a prescription for them should minimise any risk of losing them.

I'm just constantly crap and get more shingles infections closer together. Hopefully can work out if it's immune suppression from low immunglobulins, possibly antiviral resistance or cmv is causing immune suppression.

That's where I'm at.

 

[brenda]

So sorry to hear about your recurring shingles. I have been on a support forum with many people reporting the same. Anti-virals have to be taken very early on to be effective so having them in is a good idea and taken at the very first sign. They did nothing for me.

I began to have another dose within four weeks of the first which was in my right eye but I knew what to do and stopped it in its tracks, hitting it with homeopathy, rife frequencies, pear juice, and the amino acid advised. Sorry need to look that one up if you are interested. Avoiding another one, again need to look it up, helps prevent re-occurance. I have had no more trouble.

 

[Treeman]

Hi, I take anti virals as a prophylactic and still get outbreaks. I have a constant small rash which I believe may be the infection just constantly active.

The immunologist wants me to take a swab and have it analysed, but they never gave me any swabs.

I have low immunoglobulins.

 

[lenora]

Hi @heapsreal.....It's highly possible that your Dr. may be right. Have you been to a proper dermatologist? You could have ringworm and that's a fungal not viral infection.

The supplement others may be thinking of is lysine taken in large amounts. Look it up, you'll find info on it.

I've had shingles 4 different times....and they do get worse with each outbreak. I took it upon myself, once I had spent a year bedridden b/c of them, to have the new vaccine. (I have a neurological condition that makes it impossible to get doctors to agree on whether or not the vaccine should be given). Antivirals were just beginning to be used in my last outbreaks (gee, 10 years ago, maybe?). I had the vaccine when it came out...the old one wasn't as protective. This is something like 95% lifetime protection. We'll see.

There is no question that they could drive anyone out of their mind....between the pain, the pain while healing and then neuropathic pain that stays. Try to avoid spreading them to other parts of the body....and yes, it takes some watchfulness. Use things like Ivory soap for your body and hair even. Wash sheets & towels at least twice, rinse twice. Horrible virus. It's up to each of us whether or not to have the "new vaccine"." Personally, I could not have lived with another round of them. Also, there is an ointment that your Dr. can prescribe from a compound pharmacy. That helps with the itching and healing. If that can't be done, buy something that has at least 4% lidocaine in it.....helps deaden the nerves. It's OTC. Yours, Lenora

 

[Tammy]

From my own personal experience, shingles can definitely be reoccurring. Sometimes with rashes sometimes without, sometimes with only 1 blister/spot that comes up.

 

[heapsreal]

So sorry to hear about your recurring shingles. I have been on a support forum with many people reporting the same. Anti-virals have to be taken very early on to be effective so having them in is a good idea and taken at the very first sign. They did nothing for me.

I began to have another dose within four weeks of the first which was in my right eye but I knew what to do and stopped it in its tracks, hitting it with homeopathy, rife frequencies, pear juice, and the amino acid advised. Sorry need to look that one up if you are interested. Avoiding another one, again need to look it up, helps prevent re-occurance. I have had no more trouble.

Amino Acid Lysine was it? I add it to my concoctions.

 

[ruben]

I did read about a poor girl recently, think it may have been on Twitter, who got shingles aged 8. She's now 14 but apparently now spends 20-24 hours a day in bed. Tragic.

 

[brenda]

Amino Acid Lysine was it? I add it to my concoctions.

Yes correct.

 

[lenora]

Hi @ruben. Poor child having shingles at age 8. It's not uncommon for young people to have them during periods of stress (a 14 yr. having a no. of school tests for example), and usually the first encounter isn't too bad.

It's the subsequent ones that do us in...."the gift that keeps on giving." It's very sad to hear that about a child, though.

@heapsreal.....bear in mind that large amounts of lysine taken around the clock help. Antivirals came out during my last (one hopes!) outbreak. The newest vaccine is comprised of two rounds of injections approx. one mo. apart. I'm glad I had them long before COVID struck....it was an easier decision.

Shingles are tough b/c the illness can really mess with the CNS. Scars can also remain, although that's the least of our concerns with them. Light sensitivity can mean sunglasses all of the time. It's amazing how many doctors really didn't recognize shingles. I had a stream of them come in to see what they looked like. I'm sure the aging population has something to do with it.

My neurologist was the one who finally diagnosed me, and the compound pharmacy ointment really helped. He's now deceased so I'm at the mercy of ????, just like so many of us. Even he couldn't believe the 4th outbreak. I do believe that doctors are more aware of them and how to identify an outbreak today. Yours, L.

 

[Tammy]

Re: L-lysine. I take a high dose of it at first signs. 4,000mgs 2x daily.

 

[lenora]

Hi @Tammy. It has been awhile since I've taken it, but I do know that lysine has to be in the system at all times. One problem with it is that it does interfere with the sleep cycle. Still, it's more than worth it to rid the CNS of shingles.

Do you know if it can taken in addition to the antivrals? Yours, Lenora

 

[vision blue]

The immunologist wants me to take a swab and have it analysed, but they never gave me any swabs.

I have low immunoglobulins.

I too have discussed swabs and never seem to get any.
My igg3 is low

To op- will pm you again.
Ive noticed it looks mow more like a cluster than one line. Could you have gotten a secondary reactivation of hsv?

 

[Tammy]

Do you know if it can taken in addition to the antivrals? Yours, Lenora

Not sure Lenora, I've only taken it with other herbal antivirals such as lobelia and propolis for shingles.

@heapsreal said he added it to his concoctions.

L-lysine never disturbed my sleep cycle or I should say it never made it worse.

 

[heapsreal]

I too have discussed swabs and never seem to get any.
My igg3 is low

To op- will pm you again.
Ive noticed it looks mow more like a cluster than one line. Could you have gotten a secondary reactivation of hsv?

I've had several swabs but I think I get them too late. This time I have a swab on hand and will keep my hair short so first sign of a pustule I will have my wife swab it after bursting the pustule. That is the plan.

I'm get my immunglobulins tested which I haven't had done in probably a decade. Back then all were normal other than igg that was high. If they comeback low then I guess it's work through an immunologist to try and get ivig. Otherwise it's just antivirals really.

 

[heapsreal]

Not sure Lenora, I've only taken it with other herbal antivirals such as lobelia and propolis for shingles.

@heapsreal said he added it to his concoctions.

L-lysine never disturbed my sleep cycle or I should say it never made it worse.

I only take lysine when I get the infection. I use 1000mg tabs, I'm not sure of the dose but it's atleast 4000mg. I start the day with 2000mg and then several doses throughout the day.

My current herbal infection fighters are astragalus, berberine, 3 mushroom complex,
I'm on a couple of adaptogens, siberian ginseng, withnia us a multitude of antioxidants.

I have traditional pain meds but have a treatment where I use dmso which is anti inflammatory itself but it can help draw drugs deeper from the surface so I use a lignocaine cream and a cortisol cream and it seems to help.
My gp is clueless but he works with me. He's tried several antidepressants on me for nerve pain but I just can't tolerate normal doses. He doesn't understand that many cfsers can't tolerate normal sort of doses.

 

[ruben]

When you read these stories about people left with these post viral health issues, I'm sure there's so many in the general population who are totally oblivious that these predicaments even exist. If you told various people that someone you heard about had been bedridden for say even say 6 months they would tend to think they would either get better or die. Many simply couldn't comprehend that that you could be that unwell for so long and just linger in that state for years or decades.

I did read about a poor girl recently, think it may have been on Twitter, who got shingles aged 8. She's now 14 but apparently now spends 20-24 hours a day in bed. Tragic.

 

[vision blue]

I've had several swabs but I think I get them too late. This time I have a swab on hand and will keep my hair short so first sign of a pustule I will have my wife swab it after bursting the pustule. That is the plan.

I'm get my immunglobulins tested which I haven't had done in probably a decade. Back then all were normal other than igg that was high. If they comeback low then I guess it's work through an immunologist to try and get ivig. Otherwise it's just antivirals really.

yes need to sampke ib first 48 hours you “unroof “ it. Can u tell me what kind of swabs you have? And what kind of medium do you put them in? Will the lab accept it that way.

the short time window is why i have not been able to do it. I also often have them just reabsorb rather than burst.

whats your wbc count?

 

[heapsreal]

yes need to sampke ib first 48 hours you “unroof “ it. Can u tell me what kind of swabs you have? And what kind of medium do you put them in? Will the lab accept it that way.

the short time window is why i have not been able to do it. I also often have them just reabsorb rather than burst.

whats your wbc count?

I just had it done at the pathology centre and they just swabbed the rash, I don't know what medium it was put in. I've also had a skin scrapping done on the rash. I think every time I've had it done all it has said was there was inflammation. I think I've got to it too late. I really need to swab it when there's pustules and burst one so they can swab the fluid.

Cause it's in my hair I don't tend to get any or many pustules or just find them too late. I'm going to try and be ready for them next time.

Wbc can't recall but neutrophils between 1-1.2. Lab ranges are 2-7.5. Usually say I'm moderately neutropenic. Lymphocyte subset test will show different t cells are high and say appears to have a viral infection. But can't be specific to the virus.

 

[Marylib]

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.