Hi. I'm online and happy to answer your question today.
Janice, I am sorry to hear about all the problems you have been having.
Have the medications you've been using offered you any relief?
Yes, until I get near any paper products, fibers, then I itch terribly.
I can understand how difficult it would be to stay away from paper products -- there are everywhere.
Would you say that there has been any improvement since the volcanic ash, at it's highest concentration, got in your body?
Yes, I've gone through tons of wet wipes and can't even get near msgazines, books, corrugated boxes, shopping is very difficult.
Sorry, yes there is about a 50% difference of ease, at the beginning ut was as though my entire body had fiberglass in it, causing extreme, sharp needle like pain.
I can understand that. How long did the doctors feel it would take for your body to clear the ash so you can go back to a normal life?
They haven't any idea, and since they don't have an answer, it's considered something like idiological, which means I'm not normal. This is very real and my husband has been my biggest supporter, he is well aware of airborne warfare, which this is that and touch. I'vew gone thru so many plastic gloves aqnd at times they aren't enough protection.
I have seen this before and, from what you have posted, it sounds like you are getting excellent care. This, however, can be a very difficult thing to treat -- especially since long term steroid use has so many serious side effects.
The good news? In my experience patients usually have a complete resolution of their symptoms within 12 months. I know. This is a long time, but with the medication you have been receiving and good old-fashioned tinicture of time therapy, these things more often than not get better.
Now. One other thing you could try if you wanted would be to to gather up copies of all your medical records and travel to a large University Teaching hospital.
At an institution like that you could be evaluated and treated by a team of sub-specialists who are at the cutting edge of their respective fields. The best thing about these large teaching hospitals is that consultations are available with Professors and leaders in their field by just walking a few steps down the hall.
Yes, I can only have the 2 treatments for the rest of this year, and they were administered in the emergency room when I had severe hives and my blood pressure was approximately 187 over 135.
I'm not sure how you feel about going through all the testing again for a "super sub specialist expert" second opinion. It is a lot of testing......all over again.
Wow. That is pretty high BP.
When I first went to my Dr., I told him to give me every test possible, with expecting to find the worst possible scenario. All 6 vials of blood proved nothing.
Well then, perhaps a trip to a huge medical center where they can do a huge panel of allergy testing, perhaps cutting edge, research-like blood work and special pathology examinations may be helpful for you.
The Mayo Clinic in Rochester, Minnesota is an excellent example of just such a place as this. That being said there are many excellent teaching hospitals all across the country and I am sure that there is one near you.
If you could tell me what large city you live near and how far it would be possible for you to travel in seeking treatment I would be happy to give you some names. Of course, you could also ask friends and associates or check the internet yourself. Let me know what you would like to do.
Are you still there?
I've definitely considered going to Mao Clinic or similar. I had hoped that perhaps in the medical field over in Hawaii, were volcanos are prevalent, perhaps others have experienced the ash and there would be some simple answer, or product to flush this from my system. I've tried the dry steam room, I'm tired of that plan.
It seems that you have tried a lot of things with limited help
It's a horrible way of life and I'm a very positive person. An average personality couldn't handle this, it's that bad.
I don't think that there is any need to travel all the way to Hawaii for treatment. Any breakthrough that they would have discovered at a medical center on the Islands would be shared with Doctors on the Mainland via meetings and Medical Journal publications.
And you are luck to have an understanding and supportive husband, too. (At least this is what I am always telling my wife lol!)
Is there any way to google or research the medical journals for an answer?
Not really. They are paid journals and they really don't offer their articles to the public for free. And, in any event, they are written in technojargin and "doctorspeak".....tough to understand unless you spent a few years in Medical School.
What would a super sub specialist do differently than what I've already experienced.
That is why JA was invented....so we could give you information that is understandable.
You might find a MD who's area of research is a reaction like you are having. At places like that Medicine is practiced at a "more focused", higher level then doctors in town are doing in their private practices.
But, as I said above, if you go there be prepared to be poked, prodded, scratch tested, imaged and seen by tons of different super sub specialists. It will not be fun but you might get an answer.
Sometime a doctor may take your specific case, write it up and present it at Grand Rounds. This is a lecture where the entire staff --sometimes up to a hundred doctors, student, professors etc, review your case in detail and discuss it at length. This will never happen at your regular doctors office.
Where would you suggest I go on line to try and find out if others have had this occur. I contacted the owner of the company which makes Volcanic Origins, (the body mask), and he didn't have an answer. My husband took some of the Volcanic Origins and placed it in a sterile dish, poured boiling water over it thru cheesecloth and a week later there was glass like looking properties in the bottom of the dish. This is what's in my body.
From what you have posted, I believe you should bring that glass like stuff your husband found, all your medical records and test results and go to a Large Teaching Hospital.
You are not going to find much by an internet search.
Does this answer your question to your satisfaction?
I see that you are typing and that could mean a couple of things: 1. you are actually typing or, 2, the chat system has frozen up. I'll give it a few more minutes and if I've not seen anything from you I'll switch over to the Q&A system. That system works a lot like 'text messaging' but, unlike the chat system, it almost never freezes up. We can continue to work on your question there. :o)