TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here are the notes I managed to take at the 2011 ILADS conference on this topic:
2011 ILADS Conference
Identifying Environmental Illness & Mold Exposure in Patients with Persistent Lyme Disease
Dr. N. 10/29/11
The toxicity of mold is not well understood. Mold illness leads to chemical sensitivities. Many lyme patients have immune suppression/immune system damage first (due to mold, etc.) then they get lyme disease.
Usually, the cause is indoor mold from water intrusion. The key to this is a musty smell in the basement or other part of the house. A person with mold illness typically will have a white cell count of 3-4.
Mitochondrial disease: Dr. N. had this plus chemical sensitivity. Mold exposure in her home was the problem. (When she bought the house, the living room had a large, built-in aquarium in the wall complete with koi. A shed outside sheltered the aquarium. The mold from this structure was sucked into the house and sent throughout the house.) As a result, everyone in the family got Addison�s disease.
There is a $699 urine test to test for mold problems (it is a mycotoxin test).
Symptoms of a person with mold illness include: clothing tags itch them so they cut them off, bra gets too tight as they wear it (due to skin�s reaction to it)
If the mold is very toxic, you have to get rid of all of your possessions, including all clothing. It cannot be salvaged. If you wash and dry your moldy clothing at another person�s house, you will infect their dryer.
If you have this type of illness, you should prewash all new clothing.
Once a person with this problem gets away from mold, they will get sick the first 5 days (called �unshielding,� I believe), so they must stay out of stores for those days. Don�t go shopping. She advises giving these patients oxygen during this period. She recommends 2 hours per day for 18 days.
She also advises IV nutrients of they can afford it. She advises them to spend 10 minutes in the sauna after a few weeks away from the moldy environment. If they can tolerate that, they can slowly work up to 30 minutes.
She also advises 4 grams 4 times per day of cholestyramine.
She said that Dallas has the best allergy testing. She gave the following website: EHCD.com
She advises this type of patient to build a safe bedroom to detoxify all night. They cannot drink water in plastic ever again, only in glass containers. She mentioned Mountain Valley water as coming in glass containers. Then, you carry your water with you in a small glass container throughout the day.
Regular detergent and fabric softeners make these patients sick, also air fresheners, perfume, diesel exhaust. Husbands often disbelieve that these things are making the wife sick, and the marriage suffers. Women generally show these sensitivities before men. The men just go right to severe illness and skip the sensitivities phase.
If the patient has adrenal insufficiency, they may notice that they get teary at movies and commercials that are sentimental, etc.
She mentioned giving patients DHEA, 5 mg per day for 2 weeks and then increasing the dose. This helps with anxiety.
Toxicity may now have become the most common cause of adrenal insufficiency.
These people will have dysautonomia (usually diagnosed as POTS). They will go to sleep for hours after eating. So, to avoid going to sleep at work, they will skip meals. (She had this and she did this. She also described how weak the condition made her as a practicing MD. She eventually had to stop work.) The following website explains how to treat POTS: NDRF.org She stated that dysautonomia must be treated.
She gives alpha lipoic acid to all of her patients.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Thank you, TF. I really appreciate the notes you and others took as I could only watch very little myself. I am taking the notes with me to my next appointment.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
She also mentioned a porcelain face mask a person could breathe through to avoid getting sick from diesel exhaust during unshielding.
And, a porcelain trailer that a chemically sensitive person can live in.
She said the safe bedroom in a regular home would have wood floors, and not pine as it has too many resins in it.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks, TF. Very nice of you to provide these notes for us.
The presenter also has her own website with more detail (just Google her name).
For anyone who wants to purchase the DVD of this, or other presentations from the ILADS conference, here's the link:
posted
Did anyone happen to catch what she had suggested for testing the home with, it sounded really good, by the time I got a pen and paper I forgot it!!
Just got cable, Internet and power back since Sunday. We got nailed with that freak snowstorm. I'm finally getting a chance to ask about it!
Posts: 845 | From Northeast | Registered: May 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Thanks Keebler, I found it. They are called mold plates. There is a phone number to order them.
It helps you identify what kind of mold it is. If you get your house tested you can tell the company what species you need readings on.
Posts: 845 | From Northeast | Registered: May 2011
| IP: Logged |
I had the tag/bra sensitivity. I only wore camis when I was sick, or if I was at home, just a loose sweatshirt.
When we got rid of the moldy mattress (Select Comfort Sleep Number beds used to be prone to mold, but they "fixed" that problem with chemicals and never recalled the faulty mattress, thanks so much Select Comfort!), I had that perdiod of days I thought I would die. It was SO HORRIBLE!!! I had to stop all herbs/meds.
I have found what you posted to be true. Mold causes a lot of Lyme-like symtpoms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Alice, based on this doctor's talk, she would say the answer is, "Yes."
She said that mold damages the immune system or suppresses it. So, based on what she said, your childhood home damaged you, then you got lyme, then more mold exposure and that was finally too much for the immune system to handle.
She talked about the childhood home affecting a person for life. So, in your case, the affect didn't show up until the system was stressed even more. I got the impression that the doctor was very familiar with such a scenario.
I remember her talking about putting mold plates in the rooms you wanted to test for mold. I got the impression you want to mark the plates so that you can identify the readings in each of the tested rooms. Some could be bad and others not.
In the case of her home, all of the rooms were affected as the outdoor air was sucked into the house past the moldy area, thus contaminating the entire house.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
This is the closest any physician has gotten (publicly) to the idea of mold avoidance as a treatment for chronic illness. Thank you for posting TF.
Posts: 713 | From Los Angeles | Registered: Oct 2007
| IP: Logged |
posted
Alice, you kind of have to a little digging on the website to find it, but it's there and a lot if information on it too.
I sit like a pretzel too Posts: 845 | From Northeast | Registered: May 2011
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I am on the same page as what you are all discussing. Yes, I think mold is a HUGE piece of the puzzle for A LOT of us, if not most of us. I didn't realize it was a primary issue for me until finally looking into it based on Dr. K's suggestion. I believe the house I grew up in was the beginning of starting illness in me. I seemed normal, but wasn't a robust, super healthy child. The walls didn't start completely crumbling until I was older. Then I was stumbling over hurdle after hurdle. Finally, it wasn't until I worked in a sick building that had flooded (and the carpet got moldy) did I crash into a level of sickness that was unlike anything I had ever known. Still didn't know mold was anything serious. Then you know the drill, doctor after doctor after doctor..... Lots of diagnosis, and then finally chronic lyme. Stayed with this diagnosis for about 15 years. Only THIS YEAR did I learn of the seriousness of mold, and that it was the likely culprit of bringing me down. Such a shame. Now, time to try to repair the damage. From my own experiences, I've come to learn it is never "just Lyme" for those of us suffering chronically.
This is a good thread. Thanks for sharing your notes TF. I pay attention to all of the mold threads. It's such a big issue that so many people don't pay enough attention to.
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I can't sit like a pretzel. Go numb right away.
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here is the info from the website about mold plates:
MOLD P & K Microbiology � 866 871 1984 for malt agar mold plates 70.00 per room with speciation. 4 colonies/1 hour OK.
You'll see it under a heading that includes the words "Mold Tests."
She didn't explain what mold plates are. It sounds like they are these special plates that you set in various rooms and then give them to a company to see what mold they captured.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
James1979
Unregistered
posted
Alice - I think it's important to use natural products for those items that come in contact with our skin. I would consider it serious. The skin absorbs anything that it comes in contact with.
Even if you just wash your hands with antibacterial soaps, the triclosan enters your skin immediately and is in your blood within 30 minutes. Later on they can detect it in your urine. And that's only from washing the hands for a few seconds! Imagine what's going on when we put soap all over our body in a shower, or even take a bubble bath.
IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Well, I must say the more I think about this doctor's presentation, the more I wonder if I was not also a person who started out being sick from mold and then went to lyme disease.
My mold problems began as soon as we moved into a rented house. I was going to the ear, nose, and throat doctor for one problem after another for the 3 years we lived in that house.
The final problem was black mold growing inside my ear! The pain was ungodly. Drove me to leave work and go to the ENT, emergency appointment.
(The doc said that when the mold in my ear shot off spores--to reproduce--that caused the instant pain. He said it was the most painful condition they see in their practice. He put me on narcotic painkillers.) He took some of the black mold out of my ear and showed it to me. He asked me if we had mold in our house.
We then realized that there was a small crack in the basement wall that was always wet and had some black mold growing on it. This crack with mold was only about a foot long or less and the mold grew on it--no more than 1/2 inch wide.
I only thought of it when the ENT said that only people with depressed immune systems got black mold in their ear. He said others would fight it off and never get this condition.
When I told him we had this small patch of mold on our basement wall, he said to report the house to the Health Dept. We moved out instead. Then, all my ENT troubles ceased.
Interestingly, I can date the beginning of my lyme symptoms to very, very shortly after moving out of that house into my current house which backs to a woods.
My symptoms were just short and episodic at first, so it took a lot of thinking to figure out when they really started.
Regarding the mold in the rented house, I never went into the basement except maybe once every 2 weeks for a few minutes. But, the furnace in the basement sucked in air from the basement and blew it all over the house.
So, the spores from the black mold were being spewed throughout the house.
Why did that house make me sick and not my husband? Don't know, but it was very obviously the house that was continually sending me to the ENT as my illnesses totally stopped as soon as we moved out of there.
I never went to an ENT before that house or after.
So, I certainly followed the pattern of what Dr. N. was talking about. (She said that generally women would exhibit the mold sensitivity and not men. That was our case.)
To all those who notice any black mold growing on your basement walls, suggest you kill it and keep on top of it so that it doesn't affect your immune system like mine was obviously affected.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Dr. N in her talk said her husband and dog eventually got sick but not for 2 years after her. She has done some out of the box type stuff to get well. She is now able to practice medicine again.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| IP: Logged |
posted
The $699.00 lab test she was talking about is with Real Time Lab. She mentioned it once in her talk.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
| IP: Logged |
posted
The clinic she went to to get well is in Dallas. He is the best MCS dr in the World and was trained by Dr. Theron Randolph in Chicago who has passed away in the 90s. This clinic has been around for 30 years and that is where you can order the ceramic mask and tubing. http://www.ehcd.com/Posts: 871 | From orange county, ca. | Registered: Jan 2006
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
How about leaf mold from trees? I always get sick in the autumn & it struck me that it could be due to a reduction of my immune function due to leaf mold.
I moved back up to the northeast & I've been worse up here than I was in the south. It's much more damp here than it was in SC. I'm thinking I have to move to a place that is dry & sunny again. I don't know if I can deal with this climate here anymore.
I think there's more days with low pressure weather, EMFs & pollution here than there was in the south, too. I wasn't sure what exactly it was that made me feel worse here. I do like things about this area but if it makes me ill here - I have to reconsider.
It's really inconvenient but we have to do so much to be well these days. Thanks for the info about the conference notes TF.
I was feeling pretty good in the south but after about a month being up here - I went back to feeling ill again. I don't want to have to move again but it seems like it's the only way to start feeling better. There's no way I'm going to get away from the leaf mold here.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Cool]](cool.gif)
Printer-friendly view of this topic