Thursday, May 28, 2015

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

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

Monday, May 18, 2015

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

    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 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

Friday, April 24, 2015

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

*  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]

Wednesday, March 25, 2015

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:
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.

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

5.  Merck Pharmaceuticals:
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.