Update on OTT schedule and our health

Unfortunately, health at our house is still problematic. It is, however, improving — at a snail's pace. We are still aiming to put out an issue this summer.

A couple weeks ago we had a very bad pair of days due to smoke coming down from Canada. It made things here worse, but luckily it did not stay around. In fact, the air quality this summer has been pretty good.

Unsettled Our Toxic Times schedule

Due to technical issues at the end of last year, and more recently, health issues at CIIN, the publishing schedule of OTT is way out of wack. We have put out two issues so far this year: Jan/Feb and March. We were working on getting a June issue out, but it is pretty late for that. IF things go as planned, we will have the next issue out the door in early July. We do apologize for this, but MCS can be very unforgiving.

In the meantime, our office is open its usual hours: 

Monday thru Wednesday, 10am until 5pm, and

Thursday and Friday, 10am until noon.

We are in the Mountain Time Zone.

On a brighter note, we have just recently put up our new web site. Same address: ciin.org. The old site had not been updated in maybe 10 years. The new one is designed to be friendly for small format devices like tablets and phones. Research by our Web Master indicates that a very high proportion of users are now searching the web using those small format devices. 

No major change like this goes without problems that need adjusting. If you run into any issues in trying to navigate the new site, please send a brief note to John at: JOHNW@CIIN.ORG. Use the subject line "web site issue" so I can identify these messages quickly.

Thanks for being patient (unless you are not being patient) as we work our way through this rough period.

-John

Delay in September OTT

Because of a hard drive failure, the upcoming September issue of Our Toxic Times will be delayed by at least a week. If things do not go smoothly, I will let you know.  -John

Problem with the link in the Ontario Ministry of Health story in OTT

In January's lead story in Our Toxic Times, there is a link in the paragraph under the headline that points to the Canadian document that is the subject of the story. That link has a problem. Clicking on the link below in this post will take you straight to the document.

Ontario Ministry of Health and
Long-Term Care Is Taking MCS, CFS,
and FM Seriously
Time for Leadership: Recognizing and Improving Care for those with
ME/CFS, FM and ES/MCS by the Task Force on Environmental Health
Phase 1 Report by Howard Hu, MD, Task Force Chair, July 2017
The report is available at:  www.health.gov.on.ca/en/common/ministry/publications/reports/environmental_health_2017/task_force_on_environmental_health_report.pdf

 However, the problem is easy to fix so you do not need to come to this blog each time. Keep reading.

The problem is that because the link appears to brake over two lines, it actually does not contain the information on the second line and thus will only take you part way to the document. Clicking the link will take you to a page on the Canadian site where you will find reference to and a link to the document.

If you copy the link from the PDF version of OTT, there will be a space in the link address at the point it rolls to the next line, so when you paste it into a browser, simply REMOVE the space after "reports/" and it will take you straight to the document. Sorry for this inconvenience.

The document is 58 pages long and well worth a look.
-John

Another site to learn about Porphyria

I just found another Porphyria web site, and this one looks to be helpful as an introduction to the disease. Be sure to also look at the posts from November 02, 2016 and March 25, 2015.

To find and print out an entire list of drugs that have been rated in regard to Porphyria, go to the March 25, 2015 post, click the link under the American Porphyria Foundation, click the "Accept" button under the Database information, and then click the "...click here" link under the blank boxes on Drug Class, Type, etc. Be ready because the whole list is over 50 pages.
-J

A Late Update on New Office Hours

I know this is late "news" but better late, etc.

CIIN has newer office hours:
Monday thru Wednesday 10am until 5pm, Mountain Time
Thursday & Friday 10am until noon

Also, we will be closed for Christmas 2017 starting December 21st.
We will be back to work at 10am on Monday January 8th.

Thanks.

New hours starting April 17

The Chemical Injury Information Network will be changing its office hours starting April 17th. We will be open Monday, Tuesday, and Wednesday from 9am until 5pm, Mountain Time.

This is mostly for our benefit, but it will also help correct a complaint sometimes heard that we close too early, especially for people on the west coast.

This change will not affect anything else about CIIN's operations.

Things lost from the Internet can be found

Can’t find something on the internet that used to be there? The “Wayback Machine” should probably be your next step. 

Officially known as the Internet Archive, it is an organization that for over 20 years has been making a very credible attempt to keep copies of everything on the ‘Net. And not just a one-shot picture. It takes copies year after year so you can see how a web site evolves.

If you are unfamiliar with the Wayback Machine, here is a link to a very brief and interesting introduction to it:

http://askbobrankin.com/internet_archive_and_the_wayback_machine.html?awt_l=O.RjN&awt_m=JbzaQ.Q4oeP6SL

By the way, AskBobRankin.com (which you can see is part of the above link) is a tech site I’ve followed for many years. I have found it to be reliable, interesting, and non-geek friendly. You might give it a look too.

p.s. For people with Multiple Chemical Sensitivities, please remember that avoidance is the only sure way to make things better. Easier said than done, yes, but the effort must be made to start regaining some quality of life.

p.p.s. Our web site for the Chemical Injury Information Network is at ciin.org  Give it a look if you are not familiar with us. 

I hope you have a good day, week, month, year, lifetime.

-John Wilson

Brain retraining to help deal with MCS

A member gave me this information:

For those who are interested in the brain retraining programs that can help deal with MCS, Ashok Gupta, the originator of the Gupta Programme is giving workshops November 8-9 in Chicago and November 12-13 in Los Angeles. His program is similar to the one by Annie Hopper. More info can be found at www.guptaprogramme.com/live-workshops

 A couple of our members have told us that this kind of brain retraining helped them deal more successfully with the stress of MCS. -J

Another MCS/Porphyria & drugs update

This is an update to information on drugs in the March 25, 2015 posting below.

For those who are interested in drugs and MCS, especially those who have looked here before, the South Africa Porphyria web site has made some good changes that will be helpful to MCSers looking for guidance about what drugs may be usable for the chemically sensitive.

Look at the Professionals link, and click on Prescribing in Porphyria.

Please keep in mind a couple of things:
1--Porphyria and MCS are not identical, but Porphyria guidelines regarding drugs have proven very helpful for those with MCS.
2--Porphyria organizations are generally not supportive of MCS. MCS sufferers tend to trigger symptoms at much lower porphyrin levels than regular Porphyria patients.
3--Do not expect MCS or environmental illness to be mentioned on any Porphyria web site, but their drug lists and protocols have proven helpful.

-John

p.s. Antibiotics are commonly referred to under the heading "anti-ineffective."

CIIN closing its bulletin board

As of June 30th, CIIN will close its bulletin board. It has been up for several years and has very few users. Very, very few. On top of that, trying to keep the spam off the board has been nearly a full time job. When I was able to control the spam, the legitimate comments stopped too.

When we find a place to replace the BB, we will post here and on our Twitter account about it. CIIN is on Twitter at   twitter.com/ourtoxictimes

As of now we have heard about a Facebook page that might be suitable. We'll let you know. -J

The IRS will never...

This is off subject for ToxTalk, but I can't fathom the number of times people have fallen for scams regarding the IRS. And since it is just past the filing deadline, people who have problems with their taxes or who are terrified of the IRS might get hit by these kinds of scams.

So here is a blurb from the IRS web site:

The IRS reminds people that they can know pretty easily when a supposed IRS caller is a fake. Here are five things the scammers often do but the IRS will not do. Any one of these five things is a tell-tale sign of a scam. 

The IRS will never:

    Call to demand immediate payment, nor will we call about taxes owed without first having mailed you a bill..

    Demand that you pay taxes without giving you the opportunity to question or appeal the amount they say you owe.

    Require you to use a specific payment method for your taxes, such as a prepaid debit card.

    Ask for credit or debit card numbers over the phone.

    Threaten to bring in local police or other law-enforcement groups to have you arrested for not paying.

If you get a phone call from someone claiming to be from the IRS and asking for money, here’s what you should do:

    If you know you owe taxes or think you might owe, call the IRS at 1.800.829.1040. The IRS workers can help you with a payment issue.

    If you know you don’t owe taxes or have no reason to believe that you do, report the incident to the Treasury Inspector General for Tax Administration (TIGTA) at 1.800.366.4484 or at www.tigta.gov.

    You can file a complaint using the FTC Complaint Assistant; choose “Other” and then “Imposter Scams.” If the complaint involves someone impersonating the IRS, include the words “IRS Telephone Scam” in the notes.

Remember, too, the IRS does not use unsolicited email, text messages, or any social media to discuss your personal tax issue. For more information on reporting tax scams, go to www.irs.gov and type “scam” in the search box.

The IRS is huge and can be scary, but in my several contacts with it, the people have always been ... what's the word I'm looking for?... Oh yeah, Human! There are certainly exceptions, and those exceptions have bred the image of the IRS being frightening. Just do not let the scary reputation of the agency lead you into being a victim of scammers.  -J

Mast Cells vs MCS

Lately we have been hearing talk of Mast Cell Disorders with a few people thinking Multiple Chemical Sensitivities (MCS) and Mast Cell Disorders might be the same thing. There is a correlation between MCS and Mast Cell Disorders ­ much the same way there is a correlation between MCS and the Porphyrias.

People with MCS have 3* times the amount of the neurotransmitter known as substance P** as normal people. One of the properties of substance P is that it can activate mast cells by nerve conduction. This mast cell activation is what gives MCS sufferers many of the symptoms of Mast Cell Disorders. 

The major difference is that MCS mast cell symptoms wax and wane with exposures which can affect the amount of substance P an exposure is generating.  For Mast Cells Disorders that suffering is constant yet not as extensive as seen in MCS. -C

References:
*  Kimata, H.: “Effect of exposure to volatile organic compounds on plasma levels of neuropeptides, nerve growth factor and histamine in patients with self-reported multiple chemical sensitivity,” International Journal of Hygiene and Environmental Health, February 2004; 207(2):159-163 [CIIN 0112-KIMA-04-005]
**  Meggs, W.J.: "Neurogenic Inflammation and Sensitivity to Environmental Chemicals," Environmental Health Perspectives, August 1993; 101(3):234-238. [CIIN No. 0112-MEGG-93-005a]

Update on the existing set of Porphyria drug resources

Update on the existing set of Porphyria drug resources

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 September 19, 2012, post on this subject.

 -------------

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 more 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 (listed in no special order) 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 disclaimer if you wish, and then click “Accept.” You will be taken to the actual database. The “Drug class” box says All, but you can choose which type of drugs you are interested in – there is a dropdown list. The next 3 boxes can be left empty. In the “Safety” box, choose OK or BAD. This will limit the results to those drugs that have been shown to be either OK or not OK.

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

This site gives the option of printing out their entire list, but bear in mind it is at least 55 pages long.

 

2.  Porphyria drug database for the United Kingdom:

Takes you to the NAPOS database. See the next entry.

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

3.  NAPOS:

www.drugs-porphyria.org/epnet.php

Click “Home” at the bottom of the page. On the next page where it says pick your country, choose the UK so things will come up in English. On the bottom of the next page, which looks like the first page, click “Continue.” On the next page, click “Accept” at the bottom of the box (reading the disclaimer is, of course, optional). On the next page in the “Choice of drug …” box, choose the top “Enter” button and read the key to the classifications. Below that is the place to enter the drug you are interested in using either the brand/trade name or the generic name. And spelling is very important.

This site seems quite comprehensive but is not as convenient for general searching because there is no way I have found to search for anything but specific drugs – one at a time.

4.  European Porphyria Network:

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

Read the short disclaimer and then click on "Accept and continue" to see their Safe List.

5.  Merck Pharmaceuticals:

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.