Update on the demise of Our Toxic Times newsletter

Sorry for my delay getting this letter from Cynthia about what has happened at CIIN on the blog. Things have not been going well, but they are improving AT A SNAIL'S PACE. We do not anticipate restarting the newsletter. Keeping the web site and phone line going will depend on funding. I think Cynthia's letter below tells all you need to know about what has happened. Take care.  -john

Dear Friends, Members, and Business Associates:

 It is with great sadness that John and I have decided to close, at least partially, the Chemical Injury Information Network. The most obvious result of this decision will be the suspension of publishing Our Toxic Times.

 Last April, I almost died. By sheer luck we discovered I was reacting to paper – all paper. Once John removed all the books and other papers from our bedroom and bathrooms, I began to slowly recover. Though, any exposure to paper can start a nightmare reaction lasting four days or more.

 Bless John’s heart – he’s been working hard devising solutions to my paper problem, but to be honest, he hasn’t been able to find a solution to deal with my fear. And I am terrified.

 In the midst of this dilemma, John took a fall. At 73-years old, falls can be dangerous, and this fall was textbook bad. John got a grade three concussion and has a compression fracture of his T-7 vertebrae. His back will take three to four months to heal, and the concussion is also expected to take about three to four months to heal, if things go well. Unfortunately, they aren’t going well, and John’s been told it could take up to a year for him to completely recover.

 We do intend to keep the website up and current. We also hope to keep CIIN’s phone line open and to provide MCS sufferers access to the literature we’ve amassed. We hope eventually another 501(c)3 will want to take over CIIN’s extensive library.

 It has been a pleasure to have been of service.

 Sincerely,   Cynthia and John Wilson

Another Update on Porphyria drug resources

Another update on the existing set of Porphyria drug resources

Some Internet resources on drugs and Porphyria are no longer available. However, the one I most recommend (number 1 below) is still available and still my first choice.

Doctors trying to work with MCS sufferers can become frustrated by their patient's belief that all drugs are poison to them. And MCSers put themselves at additional risk when they refuse all pharmaceuticals in the belief that nothing can be tolerated. But, while it is true that MCS and drugs can conflict badly, there are some situations that absolutely need drug intervention, and there are web sites that can be of significant help for choosing drugs that could be safe(r) for MCS. So what follows is an update on a March 25, 2015 post on this subject.

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Chemical sensitivity (commonly known as MCS) and the metabolic illness Porphyria have a major overlap in symptoms, so drugs that are safe or safer for Porphyria patients will likely be better tolerated by those with serious chemical sensitivities. Keep in mind that porphyria organizations are not generally supportive of MCS, but their drug information and protocols can be very helpful.

The following web sites provide information on drugs and how they are generally tolerated by MCS sufferers even though you will not find MCS mentioned by name.

1.  American Porphyria Foundation:

www.porphyriafoundation.com/drug-database

Read the opening information, and then click “Accept.” You will be taken to the actual database. On the left side of the page, in blue, is the option of printing out their entire list. A good idea for MCS sufferers I think, but bear in mind it is at least 55 pages long.

On the right side is the “Select Search Options” set of boxes. In the “Drug class” box you can choose which type of drug you are interested in from the dropdown list and leave the next 3 boxes empty. Or you can put in a particular drug name. In the “Safety” box, you can choose OK or BAD to limit the results to those drugs that have been shown to be either OK or not OK.

Be sure to read the result definitions so you know what you will be looking at.

 

2.  Porphyria drug database for the United Kingdom:

Deadends.

www.drugs-porphyria.org/languages/UnitedKingdom/index.php?l=gbr

3.  NAPOS:

Deadends with nothing but general info.

www.drugs-porphyria.org/epnet.php

4.  European Porphyria Network:

No longer available.

http://porphyria.eu/en/content/drugs-and-porphyria

5.  Merck Pharmaceuticals:

A bit awkward to get to, but still available.

www.merckmanuals.com/professional/endocrine-and-metabolic-disorders/porphyrias/acute-porphyrias

Scroll down about 2 pages, and in a pale box on the right side it will say in red type "Drugs and Porphyria*". Click on that and it will take you to their drugs table.

 The information from these sites comes from respected medical sources and should go a long way toward giving doctors choices and more confidence in talking with MCS patients. These lists/sources are not fool proof, but they can make the difference between blindly choosing and making educated choices.

Continuation of the paper problem

Merry Christmas! And Happy New Year! And Happy Holidays of all kinds!

Not much has changed since the August 26 posting. We continue to try to establish CIIN as paper-free. It looks like we are finally on track to put out another issue of Our Toxic Times. Barring unforeseen problems, we will get it in the mail some time in January.

As I write this, we are starting our usual Christmas vacation. We will be back open January 6, 2020, at 10am Mountain Time.

Just for your information:  Cynthia started this organization in May of 1990! And the first newsletter came out in July of that year. I officially joined the organization in 1994.

Carbon filter masks

I have not purchased from this outfit yet, but I found what looks like a good source for those M95 carbon filter masks (or many other masks). It is:  iAllergy.com

Box of 20 masks for $62 and free shipping.

As I say, I haven't bought from them yet, but this looks very good. -jw

EMF tidbit about tablets

I know very little about electrical sensitivities, but I hear things occasionally that may be of interest to those who suffer from them.

One such thing is, I have been told by a small number of people that they found tablet computers were more tolerable than either desktop or laptop computers. Two people actually said they felt no reactions from a tablet. The most recent such report I got was just over a year ago, and in no case was a brand name mentioned.

I must emphasize that I have no way of knowing how accurate this information is, or if it will apply to newer tablets going forward.

Any person who is electrically sensitive is probably not reading this, but if you know someone who suffers from EMFs, you might consider passing this on. And if you do pass it on, also pass on that I do not know this for a fact. This is just something I have heard.  -JW

8/26 Saga of OTT and CIIN

Our hopes to put out a newsletter in August fell apart because of a number of problems. Continuing and additional health issues are a big part of the trouble, but delays in the total reorganization of the office have also gotten in the way.

For those who have not heard, in December (2019), Cynthia (our Executive Director and the heart and sole of CIIN) was slammed by an unrealized, and very serious, sensitivity to paper! This had been building for several years, but the symptoms were vague and subtle until suddenly they were life-threatening. Oddly, and to add a touch of humor to this disaster, it took a particularly offensive toilet paper to open our eyes. It smelled like wood chips to Cynthia — even I could smell it up close.

It soon became obvious that toilet paper was only the tip of the sensitivity iceberg. Once we started looking at all paper being the problem, we started making adjustments, and Cynthia’s health stopped going downhill. The more paper we removed from our living spaces, the more her health stabilized and actually began improving. It is a long, slow process making our lives essentially paper-free. 

When you consider that CIIN has one of the largest, possibly THE largest, private libraries in the world devoted to MCS, you will begin to understand the size of the undertaking. Add to that the fact that we have an enormous library of books of our own. Having to isolate the library from Cynthia is heartbreaking. We have both been avid readers all of our lives. Actually, I think heartbreaking is too kind a word. 

In any event, we are still here, still working with the chemically injured. However, without the newsletter at the moment, keeping in touch with our members is tough. I will try to be more diligent in posting to our Twitter account — @ourtoxictimes — and to this blog. If you get the chance, it would be helpful if you mentioned these two accounts to any other MCS sufferers you come into contact with. Obviously, many of them cannot enter the digital world, but possibly they could have someone check these two accounts for updates for them.

Thanks for listening. To those who have offered them, thank you for your prayers and good wishes. Take care of yourselves. -jw

p.s. CIIN's Twitter account is:  twitter.com/ourtoxictimes