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   twitter.com/ourtoxictimes

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 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

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

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]

Wednesday, March 25, 2015

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 need drug intervention, and there are web sites that can be of significant help for choosing drugs that could be safe(r) for MCSers. So here 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 will more likely be better tolerated by those with serious chemical sensitivities.

The following web sites (listed in no special order) provide information on numerous drugs and how they are generally tolerated by MCS sufferers:

1.  Merck Pharmaceuticals:
www.merckmanuals.com/professional/endocrine-and-metabolic-disorders/porphyrias/acute-porphyrias
--Scroll down 2 pages or so. In the box labeled "Drugs and Porphyria*" click on crossed, double-headed arrows to go to Merck's full list.

2.  Porphyria drug database for the United Kingdom:
--Takes you to NAPOS database. See the next entry.

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 next page, which looks like the first page, click “Continue” at the bottom of the box. 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” so you can read the key to the classifications. Below that is the place to enter the drug you are interested in. This site is not as convenient but is quite comprehensive.

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.  American Porphyria Foundation:
www.porphyriafoundation.com/drug-database
--Read the disclaimer if you wish, and then click “Accept.” On the next page, I just use the Generic or Brand name boxes. Read the definitions so you know what you will be looking at. This site gives the option of printing out the entire list, but bear in mind it is at least 56 pages long.

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.

Wednesday, August 20, 2014

Glyphosate is a known teratogen, meaning "monster-maker."

Below is a brief section from an interesting and frightful article from www.truthout.org about the most widely used herbicide in the world. I've seen hundreds of warning stories about Roundup™ but this one caught my attention — it seems especially well written. If you are at all interested in this, please read the whole article by following the link in the headline:

One Little Piggy Had Birth Defects

By Jeff Ritterman, M.D. 
Truthout | Op-Ed Friday, 08 August 2014 

… 
Glyphosate and Birth Defects
  

Glyphosate is a known teratogen, meaning "monster-maker." Studies conducted on rats and rabbits since the 1980s have shown an astonishing spectrum of birth defects associated with glyphosate, including absent kidneys, missing lobes of the lungs, enlarged hearts, ventricular septal defects (holes in the heart), extra ribs, and deformed and absent bones of the skull, spine, ribs, sternum and limbs.

But if birth defects in rats and rabbits have not been enough to get our attention, we are now seeing high rates of spontaneous abortion and birth defects in human infants born in areas where glyphosate is being sprayed. This is particularly true in Argentina, Paraguay and other parts of Latin America where GM acreage has increased significantly. A group of researchers in Argentina noted alarmingly high rates of miscarriages and birth defects in families living within meters of glyphosate spraying. They decided to conduct a study with animals in the laboratory.

The scientists exposed frog and chicken embryos to glyphosate. The herbicide caused birth defects in the embryos similar to those seen in human infants. They were able to demonstrate that glyphosate attacks the Vitamin A (retinoic acid) signaling pathway, which is crucial for normal fetal development in vertebrates. Since the Vitamin A pathway is found in all vertebrates, it is likely that the piglet birth defects, too, can be explained by a glyphosate induced disturbance of this pathway during embryonic development.


    But, there's more.

Glyphosate's Role in Chronic Diseases
 … continued

Yes, there's more and none of it is good. -J

Thursday, August 07, 2014

Drug lists for MCSers revised

Please see the March 25, 2015 post for more current information.
 ______________________
We've told people for some time about 2 web sites that list drugs and whether or not they should be safe or safer for MCS. One of the sites, the one from Merck, is still up and running.

The other one, from the South Africa porphyria organization, seems to be down, gone. That is the one we preferred as it looked to be easier to use and more extensive. But do not be afraid. CIIN has copies of that list, and on the Internet, it can still be found via The Wayback Machine.

If you do not know about the Wayback Machine, you probably should. It is a service that takes snapshots of web sites and stores them in an archive — in theory all publicly accessible sites can be collected. Over time, zillions of sites are stored so they can be retrieved to see what sites used to look like, especially in the case of sites that are gone from the active web.

Anyway, you can get the South Africa list through The Wayback Machine at:
http://web.archive.org/web/*/www.porphyria.uct.ac.za/druginfo/drug-frameset-group.htm

To learn more about The Wayback Machine, try Wikipedia at: http://en.wikipedia.org/wiki/Wayback_Machine

My original post about the Porphyria lists and why they are important for MCS sufferers is in a previous post on September 19, 2012. Please read that, and there is a more recent and revised post updating the whole set of resources.

Saturday, May 10, 2014

Avoid moldy washers

The most efficient washing machines are generally front loaders, but those machines are subject to mold on the door seals. I hear that newer ones don't have that problem as badly. Don't know what they have done to fix the problem, and don't know how effective it works.

I have come up with a way to avoid the mold problem — after doing a load, leave the door open until the seal dries off.

Of course, that means in most cases the machine stays on; the light stays on, the control panel stays lit, and you are wasting energy.

I see two ways to deal with that:
1.  Unplug the machine. If the plug is easy to get to, that is the easiest answer. I'm not sure, but I don't think this will hurt the washer. However, if the plug is hard to reach, or if it is difficult to pull out, you can try method number two. (Which is the way I do it.)
2.  The machine is usually controlled by a switch that the is pushed in when the door closes. I use a folded piece of cardboard that I wedge between the switch and the door frame. After a few tries, I found just the right thickness that holds the switch in without damaging it. This has worked on two machines — no more mold buildup.

I hope this helps someone.
-John

Saturday, December 14, 2013

Cell phones - Not the only answere for long distance calls

Many people with chemical sensitivity issues also have electrical/wireless sensitivity issues (something that we at CIIN know very little about). That is not breaking news. Yet every week I talk to someone who has those issues and is still using a cell phone. Most of those people know it is not good for them, but the cheap long distance rates and convenience overrule them.

The convenience is hard to argue with, but there is an alternative for long distance, at lease for those who have or can get a wired phone. Calling cards! There are many available, and their rates can be really good. Some go as low as 1 penny per minute (I've seen lower too). Here is just a sampling:
callingcards.com
callingcardsplus.com
centcalls.com
pennytalk.com
callingcardsonline.com
And some, if not all, of the cell phone companies offer there own too.

Obviously, some are better deals than others. It pays to make comparisons. I've used Callingcards.com off and on for 10 years or more, and it's worked pretty well. I'm not trying to recommend them, just letting you know I've gone this route successfully. There have been rare times when I could not connect via a pay phone when I've been traveling, but as I said, that's been rare. And calling regularly from your home phone should pose no problems.

Two issues to keep in mind, other than the need for access to a wired line. First, the basic rate is not the only thing to compare. Some have maintenance fees, weekly or monthly. Some have connection fees for each call. You will need to figure what works best for the calling you do – lots of short calls, lots of long calls, a mix. It will take a little study.

Second, contacting these companies is usually done via the internet, and for MCS/ES people that poses a problem. You will probably need someone to do the basic search on line, but it looks like there are customer service numbers you will be able to call. I can't guarantee this, but it should be possible to get a card/set up an account that way. That is how you can "recharge" the card too.

The reason I bring this up in this blog is that electrical sensitivity is not something a person should keep challenging by using cells phones. It seems that, like chemical sensitivity, continued exposures make things worse over time. And MCS/ES people can feel pretty damned isolated. That means the telephone link is important.

By the way, I have found over the years that people who can get their chemical sensitivities under control (this means practicing avoidance seriously) often find their electrical sensitivity gets much better. I hope this helps someone.

Merry Christmas and Happy New Year — and Happy other holidays too.

P.S. For those with ES, you might find the post 'Wednesday, March 07, 2012
Search tool for antennas and towers' below helpful.

Wednesday, March 07, 2012


Search tool for antennas and towers

Thursday, June 06, 2013

The Wrong Cause

At CIIN, I talk to people every month who are most likely misidentifying the cause of their distress. A woman thinks her couch has somehow gotten contaminated, but it turns out her new neighbor cleans with chlorine bleach. A man thinks the sewer is venting into his house, but he has just started parking his car in his attached garage.

But the situation is usually not clear cut, and people too often latch onto the first thing that comes to their attention. And then they can find themselves working like crazy to make their life fit into the world that evolved from misidentifying the problem. It's like trying to drive a square peg into a round hole — even if you appear to be making progress, you are not fixing the problem.

My message, as poorly as it has come across here, is that if you think you have identified the cause of your trouble and no solution you come up with seems to fix it, consider the possibility that you focused on the wrong thing. Keep an open mind.

Well, I am done babbling for now. Good luck.

Tuesday, December 11, 2012

MCS hashtag for Twitter

In order for the MCS community to take better advantage of Twitter, we should have a hashtag to brand our messages. I have put out the tag "#ChemSensitivity" for all MCS-related tweets. By inserting this tag into each tweet, we can search all of Twitter for messages related to Multiple Chemical Sensitivities.

Here is an example from @ourtoxictimes of what this looks like:
#ChemSensitivity
(Misspelling alert! I meant HASHTAG not hahtag. Typing, another of my weaknesses. -J)

Hashtags in Twitter are a way for all writers to index their own messages without needing any central authority to be involved. It also allows a person to index a message for numerous subjects. However, Twitter etiquette says no more than 2 tags per message. I've seen tweets that are nothing but hashtags, and they become nearly meaningless.

We at CIIN are pretty new and inexperienced with Twitter, so we are not a source of help in making it work, but there are many sites with help already out there, and Twitter itself has pretty good help, I think.

A lot of MCSers do not or cannot use computers, but many of us can. Twitter and the blogs are places we can connect and pass on information, ideas and support if we just learn or start to use these social networking sources.

Wednesday, September 19, 2012

An MCS-friendly Drug list

The links in this post are obsolete. 
See the updated March 25, 2015 post.

In the February 2012 issue of Our Toxic Times (page 6), we published 2 lists of drugs that are likely to be better tolerated by those with Multiple Chemical Sensitivities (MCS). They come from web sites aimed at sufferers of Porphyria, a metabolic illness that is considered very rare. However, research has shown that many of those with MCS also test positive for one or more of the Porphyrias. That means there is a high likelihood that drugs tolerated by Porphyria sufferers will also be tolerated by MCS sufferers. It's not a guarantee, but it's a very good place to start. And these lists are something doctors can respect and work from, if you give them a copy of the list to keep.

The more extensive list is from South Africa where Porphyria is much more common than it is in the U.S.:
www.porphyria.uct.ac.za/druginfo/drug-frameset-group.htm


The other list is from the drug company Merck, and the link we gave is no longer active. I looked around the Merck site and found the list again at:
www.merckmanuals.com/professional/endocrine_and_metabolic_disorders/porphyrias/acute_porphyrias.html

If you end up copying and pasting these links, remember to close up any spaces that may show up. There are never spaces in web addresses. Also, FYI, if you find a hyphen in the middle of a word in a web address, it probably should not be there, especially if the address does not work when you try it.

Porphyria is incurable, the same as MCS. It is manageable (as is MCS) by avoidance. There is testing for Porphyria, but only 4 of the 8 known Porphyrias can be tested for, and it's not cheap, so testing is not something to jump into without some thought.

CIIN has a lot of information on Porphyria, but it is available only to its members. Take care.

Saturday, April 21, 2012

Foreign EMF resources

Electrical sensitivity is not something I'm very knowledgeable about. However, I ran into a couple web sites that look like they might be interesting. Both are out of Europe where they seem to take this condition more seriously than we do.

The first is out of Great Britain:
www.es-uk.info/news/

The second is from Sweden, but there are many links or pages that are in English:
www.org.feb.nu/index_int.htm
Once on the site, try these pages:
International Network: www.org.feb.nu/FEB/Addresses.html
International Links: www.org.feb.nu/FEB/Links.html

As you wander around the site, I'm sure you will find other pages in English, and you will find some links back to the U.S. Since this is not my area of speciality, I only scratched the surface here.

Good luck.

Wednesday, March 07, 2012

Search tool for antennas and towers

There is a web site that will let people look for cell phone towers and antennas. And other types of towers and antennas too. http://antennasearch.com/

This site may be of some help in locating a place to go that is more EMF-friendly. You input an address and it produces a report. So you need to have a spot in mind before this will be helpful.

If anyone has found a "big picture" source of this kind of info, please let me know. I suspect, but do not know, that a map of the country's worst and best EMF areas does not exist. If one does exist, it must be a bugger trying to keep it up to date. But if someone finds something like this, it would be good to know.

Thursday, February 16, 2012

MCS and medicine — not hopeless

The conflict between MCS and medications is tricky to deal with, but it is not hopeless. While there are no lists of tolerable drugs for MCS specifically, there are a couple lists on the Internet that have been compiled for those suffering from Porphyria.

Porphyria is a metabolic illness that afflicts many MCS sufferers. It might possibly affect the majority of MCS sufferers, but since not all varieties of Porphyria can be tested for, we just don't know. But in a practical sense, that doesn't matter because the lists provide a strong tool for doctors to use in trying to accommodate those with chemical sensitivities.

The doctors were very happy to have something in hand to refer to, especially a list that not only gave drugs to avoid but ones that were most likely safe to use.

The two lists we used for Cynthia's surgery are available at: www.porphyria.uct.ac.za/druginfo/drug-frameset-group.htm and www.merck.com/media/mmpe/pdf/Table_155-4.pdf. This Merck link is no longer active. I looked around the Merck site and found the list again at:
www.merckmanuals.com/professional/endocrine_and_metabolic_disorders/porphyrias/acute_porphyrias.html

Thursday, November 17, 2011

U.S newborn death rate is poor and slipping

Here are some low-lights from a new report about the death rate of newborns worldwide taken from Health Freedom Alliance:

"Babies in the United States have a higher risk of dying during their first month of life than do babies born in 40 other countries,.

United States dropped from No. 28 to No. 41 in the rankings of newborn death risk. It is now tied with Qatar, Croatia and United Arab Emirates. And behind South Korea, Cuba, Malaysia, Lithuania, Poland and Israel.

One of the bigger challenges in the U.S. is complications from preterm birth. The U.S. rate of preterm birth is double that of countries in Europe and Northern Africa."

There are many chemicals in our environment that can cause premature births, and ours remains a highly exposed population.

Wednesday, October 19, 2011

7 billion people

The world's population will hit 7,000,000,000 (7 billion) people on Halloween. When I was born, right after World War II, there were about 2.5 billion people on Earth.

What is the maximum number of people the Earth can support before things fall apart and only the very rich have any quality of life?

What kind of world are we leaving for our children? Good night.

Thursday, September 08, 2011

Possible tech issues on our web site

The CIIN web site is getting a little revamp. And for technical reasons (most of which I am clueless) the site may be down at times until things are fine-tuned and running normally again.

In case you don't know yet, CIIN now has a Twitter account under @ourtoxictimes. The entries there are not earth-shaking, but we try to keep people up to date on some basic activities -- such as when the newsletter goes to press and when it's mailed out.

Also, CIIN will be closed from September 27th until October 11th. We're going to try to take a trip during part of that time -- rest up during the other part of that time.

Wednesday, August 17, 2011

MCS Lemons-to-Lemonade Project

This comes from Cynthia Wilson, Executive Director of the Chemical Injury Information Network.

The Lemonade Project

Many members of our [MCS] community are house-bound. Some have risen to the occasion, but how? How are people who are fully or partially house-bound able to handle it? Specifically, how do they spend their time, what projects or hobbies have been helpful, have they found ways to be productive given their situation, have they found ways to create a business or a specific project, or anything else they can think of.


Dr. Robert Mayer, author of the recent, well received book Strategies for Surviving Chemical Sensitivity, The Basics, is planning a series of articles for our monthly newsletter Our Toxic Times on how people with MCS are coping — showing the most resilient aspects of the MCS community and possibly showing others how to live successfully within the confines of the illness.

For example, a woman in the northeast, photocopies educational material and distributes it to individuals in need. She's absolutely dedicated to informing those around her. "I can't do much, but I can do this," is one of her most elegant refrains.

For those who would like to write out their stories, they may be sent to: Lemonade at CIIN, PO Box 301, White Sulphur Springs, or emailed to lemonade@ciin.org. Please provide contact information, so if Dr. Mayer has questions he can contact you. If you think you need to be interviewed (by phone or email), please send a note to CIIN or email with your contact information, the best time to contact you, and a brief description of your own lemonade.