Ongoing Immune Reaction - Shingles

[MeSci]

I don't know the answer to this but I am not sure it is quite so straightforward. Would you have mentioned the adverse effects listed in the drug information sheet?

I have only once tried a drug of the zopiclone class (z-drugs), which was zolpidem. I had such severe dysphoria (feeling terrified, disorientated and unable to control my thoughts) that I was sure I was having a stroke. Fortunately, a doctor neighbour came round and said he had had exactly the same problem and I managed to calm down without going to accident and emergency.

I guess none of it would be a problem if all prescribed drugs were only available through a physician - so getting them would entail advice from the physician and checking the diagnosis (the sleep problem might be due to an endocrine tumour perhaps). And it is interesting that zopiclone is a banned substance in several countries - presumably for a reason.

I guess it would not be a problem if all prescribed drugs were only available through a physician:

AND physicians were all competent and took the time to explore and explain all possible contraindications, interactions and possible adverse effects, and gave patients this info in writing along with advice on what to do in the event of problems.

But in all my 62 years, this has rarely if ever been the case, and I have had numerous adverse effects from prescribed meds. Even when I have pointed out adverse effects, they have been ignored/dismissed. One severe adverse effect which caused hospitalisation, permanent damage and loss of already-meagre income was not picked up by any of the doctors I saw throughout the 7 years I was taking a medication. It took a comment on here and a Radio 4 health programme to switch on the little light bulb over my head, and my decision/request to change medications. During those years of worsened health, doctor after doctor was blaming me for it, and being rude and abusive, so that I was driven to change surgeries to a more-distant one (and I have no transport).

I have had no adverse effects from drugs bought online, perhaps because I do have the time to explore all the things that doctors have not, and make very careful and well-informed decisions.

I know that this is not the case for everyone. Life is complicated.

 

[PeeWee]

@heapsreal 'Dermatologist will more than likely diagnose folliculitis or dermitis'

We are fairly certain that the dermatologist Elle saw understood the rashes as a symptom of the illness rather than a separate matter, but if the eventual biopsy result is one of these diagnoses we will be asking how often people have to give up work entirely for a period of over a year (and counting) as a result of the illness and exhaustion that arrives with folliculitis or dermititis.

 

[MeSci]

When I had prostate cancer i did not decide rationally. My wife had to overrule me and get myself cured. My brother in law was not so lucky.

I'm sorry to hear about this.

 

[MeSci]

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.

I found this page on Mollaret's meningitis.

 

[user9876]

I would hope that anyone taking what is a prescription drug is doing so because it has been prescribed by a doctor and that the doctor is aware of the side effects and when necessary monitoring for them. For example, I know when my wife was on anti-virals (along with many other things) the doctor did regular kidney and liver function tests and when they started to go wrong the doctor reduced or removed the antivirals.

The idea of people buying drugs on-line and unsupervised is quite scary to me. Not only because of things like the diagnosis may be wrong or side effects not properly watched for and managed but also because there is a huge volume of fake drugs.

I don't know the answer to this but I am not sure it is quite so straightforward. Would you have mentioned the adverse effects listed in the drug information sheet?

No I wouldn't have mentioned the adverse effects, and the GP who prescribed it for me didn't either. He probably expected me to read the drug information sheet and find out for myself, which quite reasonable, and which I did.

Sometimes its best to consult the pharmacist giving the drugs as well as the doctor around safety and side effects. My experience is pharmacists like to be asked and are happy to look things up for people.

 

[minkeygirl]

I'm sorry to hear about this.

My point, which I forgot to note, is that going into an appointment all unicorns and rainbows, thinking you are set if you just smile while handing over your of symptoms is, imo naive. You have to go in like a warrior but expect to be disappointed.

This fiasco got me to get off my butt to change my insurance (to something much more expensive) so I can go see someone who is actually qualified instead of being foisted on someone who my insurance deems "adequate".

 

[Undisclosed]

This thread has been taken quite a bit off-topic related to a conversation about medical advice.

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.

Swapping information and experience is much different than giving medical advice. One of the reasons that the Phoenix Rising forums exists is to swap information and experience. If it wasn't, we wouldn't have over 664,000 posts. I don't recall reading anywhere on this thread where members were told they can't swap information and experience. We do have a rule about not giving medical advice and it's very specific. You can read about our rules here.

Jonathan Edwards said: ↑
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.

Yes, members do give very specific directives that breach the 'No Medical Advice' rule. You don't see medical advice very much here any more as the moderators contact members and ask them to reword their posts so the rule isn't breached. There are reasons why we have this rule and it's not at all about stifling information. We are a non-profit and we have to live up to some legal and ethical ramifications. If you read the 'No Medical Advice' rule, you can see that we have left it quite wide-open for members to discuss medical issues. In a nutshell, the rule states:

Insisting that a member has a specific diagnosis, must utilize a specific treatment or protocol, or must take a specific amount of a supplement or medication, is all considered to be medical advice and is not permitted on these forums.

There are some gray areas at times which the moderation team has to make decisions about.

@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?

Of course the Phoenix Rising forums are meant to be for people with ME/CFS -- that's the point of the forums. That being said we do not exclude caregiver members, researcher members, doctor members or any member who has some interest in ME/CFS. The rules we have are rules that all members need to follow no matter what their health status. The only we thing really require that because the forum is about ME/CFS, that the posts are related to ME/CFS in some way. Of course, we allow non-ME/CFS discussion in the Community lounge.

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

Nobody said anything about shutting the forums down. No staff at any point would suggest shutting the forums down related to the rules. The only reason we would ever consider it would be if we no longer had any staff to run the forums.

As already stated, we are asking one small thing re: the 'No Medical Advice' rule, nothing more. Also, it's important not to dismiss the opinions of other members. Please refer to the 'Forum Guidelines' where it states among other things:

Please remember that members are offering their personal opinions in posts. Everybody has unique beliefs so please don't try to invalidate another member's beliefs simply because you disagree with them. Opinions are debatable as long as the debate remains constructive.

Regarding the rule, the ONLY restriction is avoiding giving specific and prescriptive medical advice. If you think somebody has breached the rule, please report it and avoid discussing it in the middle of a thread. All it usually takes to correct it, is a few word changes.

Please avoid any further off-topic posts.

Thank you.

 

[MeSci]

I would hope that anyone taking what is a prescription drug is doing so because it has been prescribed by a doctor and that the doctor is aware of the side effects and when necessary monitoring for them. For example, I know when my wife was on anti-virals (along with many other things) the doctor did regular kidney and liver function tests and when they started to go wrong the doctor reduced or removed the antivirals.

The idea of people buying drugs on-line and unsupervised is quite scary to me. Not only because of things like the diagnosis may be wrong or side effects not properly watched for and managed but also because there is a huge volume of fake drugs.

Sometimes its best to consult the pharmacist giving the drugs as well as the doctor around safety and side effects. My experience is pharmacists like to be asked and are happy to look things up for people.

At least 2 of the last 3 drugs I have been prescribed long-term are supposed to involve regular blood checks, at least initially. I was never called in for blood checks.

As for pharmacists, one of the pharmacists at my pharmacy called me in for a prescription med review and asked me if I was taking desmopressin for my muscles.



Sorry if this is off-topic. I wrote it before reading @Kina's post.

 

[heapsreal]

I would hope that anyone taking what is a prescription drug is doing so because it has been prescribed by a doctor and that the doctor is aware of the side effects and when necessary monitoring for them. For example, I know when my wife was on anti-virals (along with many other things) the doctor did regular kidney and liver function tests and when they started to go wrong the doctor reduced or removed the antivirals.

The idea of people buying drugs on-line and unsupervised is quite scary to me. Not only because of things like the diagnosis may be wrong or side effects not properly watched for and managed but also because there is a huge volume of fake drugs.




Sometimes its best to consult the pharmacist giving the drugs as well as the doctor around safety and side effects. My experience is pharmacists like to be asked and are happy to look things up for people.

Im guessing everyones a big boy and girl and should be taking full responsibility for their own actions.

Theres been some in the past who have taken avs unmonitored but most from memory are getting blood work and working with a dr.

As for online drugs, again overhyped about fakes etc. A few years ago now, pharmacies in the uk were dispensing fake cholesterol meds and didn't know it. This was throughout the uk.

I have used online meds as they have been cheaper, i have a prescription even though i dont get asked by the pharmacy and by law im allowed to order in 3 months worth of medications for personal use in from overseas , never a problem and they have worked fine. People need to do their own research on alot of this stuff. People with cfsme generally arent rich so using online pharmacies can be a good way to make significant savings from the exact same medicine bought locally, especially medicines used for long periods .

But if an individual is to frighten to go outside the norm than they can still pay for overpriced meds in their country. Also remember alot of meds are off label for cfsme so will cost more.

You might be surprised at how many do use online pharmacies to save alot of money that are also monitored by their gp. We arent all junkies shooting up in some alley way.

 

[minkeygirl]

I have used online meds as they have been cheaper, i have a prescription even though i dont get asked by the pharmacy and by law im allowed to order in 3 months worth of medications for personal use in from overseas , never a problem and they have worked fine. People need to do their own research on alot of this stuff. People with cfsme generally arent rich so using online pharmacies can be a good way to make significant savings from the exact same medicine bought locally, especially medicines used for long periods .
.

A prime example is Valcyte. One month in US $1400/month (that was the cheapest I found). From an online pharmacy $409/month.

 

[potbatch]

I walked into my immunologist appointment armed with 2 years of labs with proof of an immune disorder. Numbers don't lie, but he would not treat me until I had a psych eval. Would he have asked someone with MS or RA to do this? I doubt it.

We can certainly relate to this experience. Many doctors consider that patients who keep copious records of what is going wrong with them to have 'health anxiety'. It is very difficult for a patient with ME to get taken seriously by an NHS doctor.

 

[potbatch]

I would just like to thank everyone who left information in response to my post about my wife's condition. All very much appreciated. We were especially interested to hear about Mollanet's Meningitis which seems like a possibility here and is something we can raise with the doctors. Thanks to heapsreal for that. Thanks too for Kina for clarifying the situation about advice. It is good that we are able to share information here as long as we pay attention to the wording. Unfortunately very few doctors know much at all about ME so the information and experiences we can share on this forum are absolutely invaluable. Thanks again to everyone who responded.

 

[PeeWee]

Just to say that without her daily notes, records of test results and photographs, Elle would have arrived at her appointment with a dermatologist (for which she had waited months) with no evidence of rash or skin problem at all! Both our own doctor and the dermatologist have found the background useful, perhaps especially the photographs and the records of the private tests she has had - both asked for copies of some of the information for their own records.