Hi Looloo!
Nice to hear from you!!
You are going through so much. It's horrid, it's constant, daily.
BTW, chicken px and shingels are anyway completely the same for you as a patient = herpes varicella infection. Usually once infected (if naturally or vaccinated) those viri stay life long along your nerves. The lower the immune system, the more likely they regrow in numbers, along nerves = shingles.
Also mild chickenpox - bit of rash but no other symptoms- after first vaccination/infection is possible when in contact with wild strain, only few typically very infectious blisters should form.
Shingels due to location along a nerve just hurt like hell. (I hope you did not have it full blast)
Mild chickenpox rash doesn't hurt, but is highly infectious (so is the saliva) and if passed on to pregnant non-immune women a real huge problem for the fetus.
Breathing in the virus is enough to get infected, no need to touch or speak to in direct conversation.
In German they are called 'wind pox' because they are so infectious/contagious, that an infectious person can infect you from ca10m away = carried by the wind.
That's what one has to take care of most:
who to have contact with and not to mingle amongst strangers (e.g. shopping) as long as being really knowingly contagious. Shopping can get a real trap for pregnant women, for wee babies/newborns. Once they are older, usually no problem, hardly a way to excape them anyway but the timing is important. Don't get me started on 'pox parties', people do not understand the difference and danger, even well meant.
After 60 yrs of age its actually recommended to do a h.varicella immunisation to boost the IgG without obvious sickness to prevent shingles from breaking out. But there are always the odd one out and no one shoe fits all.
Anyway, getting side tracked. ;-)
how did you go with the pillcam?
How was the swallowing? When did it come out? Any discomfort in the stomach until it was passed on into guts?
It's a great tool, isn't it.
It really should show the surface of all your intestine very well, ulcers, stenosis, I hope they give you some pics. It's very interesting to look at.
As to what to do I am a bit empty in my brain (yes!), because the pillcam is really one of the last options we still have on our list (and not done yet), but our calprotectin level is 0.
If the calprotectin level was up, I would ask for medication trials like IBD patient receive, if that made sense and was an option. There is an inflammation that this white blood cell protein is found in the first place. How to tackle the inflammation in general.
The problem: those 5 ASA and equivalent treatments (have a search for IBD treatments, there are quite many it seems, but I have zero experience) are horribly expensive and I suspect no one gives it just like that for a trial.
Like I would have wished for a iv. immunoglobulin trial treatment, 2 in 3 weeks apart to see, if our symptoms were GI autoimmune disease related. This seems one way to treat them. Of course immonoglobulin is a human product = infection risks = expensive = hard to get, hence no way to get the hands on for a trial.
A trial - my argument - if not contradicted due to other medical issues, is always diagnostic as well: if it worked or not.
We had a 3 month+ neuropathic pain trial and did not work. At least the pregabalin we ease out now, keeping Amitrtiptyline for the night (for a better sleep). Would Amitriptyline be something? It's meant to help with abdominal pain (not for depression as it originally was labelled for).
If anyone reading this has an idea, we would be so, so happy to hear about it.
In our desparation I ordered L-Glutamine.
Looloo, I am very sorry to say, that I am pretty much helpless and not useful for any suggestions, that could be a real good 'arming' for consultation.
I am not sure if I was happy or not to find something with the pillcam. I guess it depends, WHAT is found.
I wish you all, all the best!!!!!!!
Kind regards!