Ongoing Immune Reaction - Shingles

[Crux]

I am not quite sure what you mean by take heed

I mean, " to take careful notice".

I don't understand what you believe the purpose of a support site such as PR is for? I'm sincere.

 

[potbatch]

I understand that it feels like that. But the doctors you have seen in the NHS are probably doing the best they can for your wife. They are working to the best evidence known. Private practitioners tend not to do that and to my mind that is not 'trying to help' in an honest sense.

If your wife is actually running a temperature above 38 degrees she needs re-testing for infection or immunodeficiency by a mainstream physician in my opinion. ME/CFS is not known to cause fever in that way. The problem I see is putting everything down to ME/CFS - whether by the doctor or at home. There is no evidence that anti-virals are effective in ME/CFS as yet so there seems no point in following that avenue anyway. Forget the ME label if I were you. At present it does not help much because nobody knows what processes it is a name for. And by saying that I am not saying that there is no such thing as ME/CFS. There obviously is - lots of people have it. But it probably isn't a useful label when it comes to looking for treatment.

Our experience of the private sector, including Dr Myhill, has been rather more positive. Thanks for your advice nevertheless and it makes us think that perhaps we should give the immunologist another chance. My wife did see one a few months ago. She was given some basic tests then sent away with 'just' ME because they didn't show anything. But that was before the current high temperatures. The trouble is if we go through the NHS again it is likely to take many months so we will probably arrange to see the same immunologist privately. We are lucky to be able to afford this and we know that not everyone can. As you say in one of your other comments, the NHS 'is in a state of collapse'. Even then, we have no guarantee that the temperature will be high at the time when we see him. It is frequently above 38 but it is variable. We shall just have to hope for the best.

We thoroughly agree that ME is not a useful label when it comes to looking for treatment. My wife makes as little mention of it as possible and just presents her symptoms. But it is on her notes. It is the doctors who tend to attribute everything to ME.

 

[minkeygirl]

I mean, " to take careful notice".

I don't understand what you believe the purpose of a support site such as PR is for? I'm sincere.

I totally agree, why bother with a site if people can't tell of their experiences so others can gleen information? I took you to mean, listen to what people say, then make your own decisions. People can't sum up in short post all they've done and been through.

 

[minkeygirl]

Be your own advocate. You already know how hard it is with ME on her chart. If you feel something is not right, pursue it. I felt like I couldn't breath deeply enough. They all said my lungs sounded fine. I pushed for over a year to get a specific lab for an infection. High positive was 950. Mine was 1256. Now I'm getting treatment after being ignored and I feel better after suffering.

 

[minkeygirl]

@Crux Your comment about shingles. I read it that people here had shingles. Period. Not that Shingles is more common in CFS/ME? Can you clarify?

 

[Crux]

@minkeygirl ,

There are many people here with chronic shingles.

Here's my quote. From reading the threads about shingles and all, I've noticed a pattern, that many folks here have chronic shingles.

I mean, even though we are a diverse group, we have many sub-groups with common conditions and symptoms.

I believe that having the freedom to express this information as well as describe how we 'deal with it', is just.

One of the many brilliant qualities of PR is that we have a collection from which someone can notice the patterns and possibly discover or research to find , say , a biomarker.

Even in other conditions, there are many sub-groups, and various signs and symptoms.

Not everyone with MS has all the markers and symptoms.

 

[minkeygirl]

@Crux I totally agree with everything you said above. I can't imagine how sick i'd be without information I got from people here and then pursued some avenues.

I just wanted to clarify, which was you noticed a trend but are not saying that it is a documented fact.

 

[Crux]

I just wanted to clarify, which was you noticed a trend but are not saying that it is a documented fact.

Yeah, My butt would be busted if I tried to pass anything false or sketchy around here.

I'm with you about getting ideas here. I do search a lot to figure out what to try, but peoples' descriptions here are most detailed, and they return over time to add more to their personal experience.

You just don't find that at any other website.

 

[Jonathan Edwards]

The trouble is if we go through the NHS again it is likely to take many months so we will probably arrange to see the same immunologist privately.

That may well be a practical way forward. I used to think there should be no difference in the service received but simply the time factors and knowing you are seeing the named specialist can make a big difference.

 

[Jonathan Edwards]

I mean, " to take careful notice".

I don't understand what you believe the purpose of a support site such as PR is for? I'm sincere.

I see the purpose of PR as it is now (which may be rather different from what it was a while back) is to allow people with CFS/ME to share information about their experiences and the background research going on etc. etc. Lots of very useful discussions occur every day. But I personally do not think that should extend to making suggestions about taking prescription drugs to people you have never met who may obtain such drugs for a family member who may in fact be suffering from a problem that needs a quite different form of treatment. I think it would be reasonable for a regulatory body to shut the site down if that sort of suggestion was the main activity and I think that would be a great pity. As people know, a number of physicians have had their license to practice revoked for making suggestions without good evidence. I think we are sailing quite close to the wind if we do the same and it seems to me unnecessary since we have no good evidence that these drugs do actually do any good and there are lots of other helpful things people can be saying to each other.

 

[PeeWee]

There’s no question, as far as my reading has taken me, that shingles and cfs are often linked in individuals’ experience … and indeed in some research studies.

My previously active partner, Elle, was first diagnosed with shingles, by 2 different medical professionals, in April 2014 (rash accompanied by feeling terrible and terribly exhausted); she’s never fully recovered. At the 5th rash outbreak in May 2015 our doctor said it couldn't be shingles as it was too widespread on the body, so stopped prescribing shingles anti-virals - and the rashes became more frequent, of longer duration and more widespread. She arguably had 13 different outbreaks of rash in 17 months - none in the last 3. Rafts of tests have turned up very little. She has had to give up work and our lives have radically changed to accommodate the uncertainty of her health and the couple of hours rest necessary to get her through even the good days.

We've found the more information we can give doctors, the more options they come up with. We have photos of every rash there's been, with dates, & documentation of every test that's been done, with results. We'd recommend taking photos - if there's a rash & at any point anyone suggests its not shingles, what is it? Our doctor referred Elle to a dermatologist who plans to biopsy the next rash that appears.

Please let’s swap information and experience. Everyone here understands that most other posters are not medical professionals. Many of us, perhaps especially those in the UK, are ill or concerned for someone who is, but find medical professionals can offer little or no help. If something concerns or helps someone else, I want to read about it. Discussion and the telling of individual stories is vital when so little else is on offer - and of course also so that posters can be made aware through informed responses (as in this thread) if their experience may have a cause that is not cfs-related and maybe should be flagged (again) to medical professionals.

 

[potbatch]

Hi @potbatch ,

I had consecutive shingles outbreaks for 5+ years, it was torture. The neuropathy was indescribable.

I didn't go with antiviral meds. The doc said they were immunosuppressive. I'm already on corticosteroids.

None of the antiviral herbs or supplements worked very well, but B12 helped to an extent.

The most helpful interventions have been :

Reducing acidic foods, drinks, and supplements.

Stopping probiotics, especially lactobacillus types.

Taking antibiotics that reduce lactic acid producing bacteria. ( So far, penicillins have been the most effective.)

Some antibiotics have caused outbreaks because, I think they are not inhibiting lactic acid bacteria.

I know this may seem like a strange way to treat a virus, but it seems that some viruses may be pH sensitive (?)

My thoughts are with you and your wife.

Many thanks for your info and good wishes. Much appreciated.

 

[Crux]

But I personally do not think that should extend to making suggestions about taking prescription drugs to people you have never met who may obtain such drugs for a family member who may in fact be suffering from a problem that needs a quite different form of treatment.

No one is doing this.

 

[heapsreal]

If one thinks they are having problems with chronic shingles which is vzv, look into mollaret's meningitis which is a chronic form of vzv, can also be from herpes 1 and 2.

Can it be related to ME, of course especially if you have low nk function as this can make one prone to any virus reactivating etc.

Myself i was considering shingles vaccine before i stopped avs and was told i had good immunity to vzv, probably just had very high viral load to vzv. So after a month or 2 i stopped famvir and within a few days got shingles on my head which caused hypertension and weird rashes on both my legs that would flate up and down every few days.

I saw i supposedly good immunologist, useless as tits on a bull. Basically said keep doing what i was doing which was famvir and pain managemanagement for headaches. I got no relevant info i didn't already know .

My suggestion is talk it over with your dr about famvir which u may need long term and adequate pain relief which can help reduce nerve damage, drugs like lyrica and gabapentine or a low dose tricyclic . U may need a few days of prednisolone to help inflammation .

Just a fact about shingles is that there is an increased chance of having a stroke after an attack. I dont understand why but very possible for me when my blood pressure shot up. Shows its important to treat this infection for which antivirals are important .

Also rashes are common so u do need someone to diagnose it properly ?

 

[Tammy]

I forgot to add @Tammy has been using a successful protocol for EBV, I know its not the same virus but it may be useful to give it a try, it involves using l-lysine instead of antivirals plus other stuff, maybe she will look in.

Cats Claw, L-lysine, Licorice root, B12, Zinc, Vit C, Spirulina, Barley grass juice powder. @maryb.............I'm finally starting to see more improvement with my OI which is one of my most challenging symptoms.............took awhile but finally!

 

[minkeygirl]

@Jonathan Edwards Because you see the forum one way does not mean anyone else does. Maybe they don't want it to change. That certainly isn't up to one person to decide IMO. It it is my feeling that this forum is for us, those of us who are sick. What suits our needs. Am I wrong? Did that change?

There is plenty of talk here about research. There are posts about dogs and family issues and chocolate. There are people talking about their protocols and testing. That does not mean they are advising anyone on what someone should do. And if someone does, they can be reported to the moderation team and the post will be removed. @heapsreal shared his ongoing experience with shingles and urged @potbatch to see a doctor and get a diagnosis.

People are desperate and want and need to reach out to others who can understand the situation they are in. Where to turn. I can't imagine being sick and having no where to ask questions. There was no internet when I first got sick. I looked for ways to commit suicide because I didn't know where to look for treatment. PR and other forums have saved me. It's that simple.

In this thread, it is the 2nd time that I remember that you have talked about shutting the forum down. Is that even up to you or would you report us to someone? Who does that serve? How does that help anyone? It doesn't again my opinion.

 

[barbc56]

No one is doing this.

With all due respect, I disagree.

No one is saying you can't post experiences but there are many posts/threads where members are giving medical advice possibly without even being aware of this. Sometimes it's a matter of wording. Saying this is what worked for me or even someone else is much different than interpreting of bogus theories/tests and recommending treatments. I should add that this advice extends to any tests, even if they're conventional.

How many members are taking medications that need a prescrption but buying them from illegal sources because they think they need them? This information may be harmful especially if someone is interpreting their symptoms to a condition that may not apply and valuable time is lost where appropriate treatment would help.

What message is this giving?

Conventional medication doesn't have all the answers. But that doesn't mean alternative treatments do.

Information on how to find a doctor who has a better fit, ways of dealing with them all is very useful information.

Doctors come in all different sizes, and temperments. They're only human. Sometimes they are wrong and need to be called on that. The system is broken in many ways. That's the reality and where the focus of change should be.

This is not the same as doctor worship nor saying we shouldn't be our own advocates.

You could spend years on google and not even come close to what someone who has had years of study in medical school and experience knows.

There's a site called http://whatstheharm.net. It's eye opening.

I could go on and on but now now as it's late.

Barb

 

[minkeygirl]

Then report the offending post to the mods. That's the mechanism to handle it. Not to shut the forum down.

 

[barbc56]

Then report the offending post to the mods. That's the mechanism to handle it

Point taken. An important point and one often forgotten. Thanks.

I don't see anyone saying the forum should be closed. Maybe it's a matter of interpretation and I'm missing it?

Barb

 

[minkeygirl]

@barbc56 go back and read one of professor Edward earlier posts where he talks about a regulatory agency shutting the forum down. Exactly how would they know unless there was a whistle blower.

And everything is interpretation.

Sorry can't do the quote function but here is what he said which I copied

think it would be reasonable for a regulatory body to shut the site down if that sort of suggestion was the main activity and I think that would be a great pity.