It is high mold season and so, mold exposures are a constant threat where I live -- not to mention pesticides, smog, etc. I have been symptomatic and so, went back to the environmental DR.
She has recommended that I do a course of oxygen inhalation with a ceramic mask for 2 hours a day for 2 weeks and then use on it only on an as needed basis for exposures after that.
She has also recommended that I do a phosphatidylcholine IV push followed immediately by a glutathione IV push, once a week for 8 weeks.
She wants me to do UVB light treatments to my recirculated blood at the same time as the IV pushes but their supplier for a critical component in the treatement process is closed for a month and they are unable to perform this treatment until mid August.
She also has recommended that I continue using the decontamination process (I have already shared this method on another string) if I take a mold hit followed by an at home cleansing:
- immediate sinus irrigation with usual saline solution which includes 1 drop GSE
- a very hot water bathe soak with 2- 3 cups epsom salt followed by a normal shower.
- a cleaning out of intestines by doing a coffee enema
She was happy to see that I walk vigorously every other day in order to sweat while moving and that I am aware of air quality levels and always try to exercise when levels are least toxic. She did say that saunas are also beneficial at a deep level but because money is so tight, what I am doing is really good, to keep it up.
I am already on N-A-C and alpha lipoic acid to supplement bodies natural glutathione production which she wants me to continue doing.
She was very happy with my progress, said I am much better than hwen she last saw me in November 2007. She feels that I am doing a good job with my daily personal health care. I told her that several other people with MCS (includes mold allergy sufferers) have aided me with sage advice. She agreed.
Made me feel pretty darn good about myself as this will be the first IV push I have ever had and I rarely see Dr's or take any meds, its been over 2 years since any steroids or epinephrine, which some of you may know is the only treatment the medical community can come up with for mold allergy exposures.
The principal to give the body what it needs so it can heal and become less sensitive is proving to be true for me. I am encouraged over all. Now I just need to get past these last few exposures and stay away from problem areas -- like potted plants and gardens! Here in the south, mold thrives in these environments. Knowing this and realizing that I can take a hit simply by standing or walking too close to a raised bed or old potted plants outside a building is making a big difference for me lately.
I look fwd to any insights or information anyone can share about these treatments.
I'm new to this forum but wanted to comment on your post. I, too, suffer mold problems. Where have you found your information? I saw an enviro doc for a while & got some help but not nearly there. You live in the south? Can you recommend a doc or where I can find somebody to help? I've looked on AAEM. Not sure where to turn. Any help would be greatly appreciated.
Both my Dr in Atlanta (member) and the two I see in Dallas (fellow) are listed on AAEM. My allergist originally referred me to these doctors. After I posted this string, I experienced some really big crashes so I moved to Texas which is arid compared to GA. There is such a wealth of knowledge here as there is a large EI community. I just keep asking questions and talking to as many of the old timers with EI that I can as they are often some of my best resources.
This illness is so complicated, there are so many layers to it, it can be quite overwhelming at times. I have learned that it is imperative that you become your own healer, learn all you can and make the best decisions you can based on what your body is telling you and what you can afford. It takes great commitment and daily effort to get better. There is nothing though that will work for long if you are not successful with avoidance. Even the specialist will tell you that.
Were you able to decontaminate from the place where you were poisoned? That has proven to be a big factor in healing for many, especially with mold.
In Dallas I went through provocation neutralization testing and am now on sub q neutralization mold antigen therapy. It was rough going initially but I am now able to take the shots and do see relief. Here I learned that I am severely allergic to the rain molds, leptosphaeria and phaeosphaeria. We are now in the rainy season here in Tx, and I am holding my own fairly well. Of course rainy here is nothing compared to GA. All my Dr’s have agreed that I must not live in the east again.
I also found out that I have serious food allergies with symptoms like tingling feet and dizziness that I would never have associated with allergies. Getting on a rotation diet with all safe foods has made a really big difference for me, allowed my total load to go down and stopped some pretty debilitating symptoms. I am not in pain all the time anymore, it's a real blessing.
For the first time ever I am living in an EI safe house, no formaldehyde or mold and 10 years off gassed. There are no carpets, no cabinets and the house has heavily filtered air and water. I have improved a good bit with avoidance and this has also helped to lower my total load. I am now unmasked and fully aware of all my sensitivities. Am clearly seeing what my detox reactions are as opposed to exposure reactions.
I have also learned since being here that many people with severe MCS have an infectious disease in their past. Many have lyme disease (my case) or epstein barre. This really disrupts the detox pathways and when you couple it with mold poisoning, it becomes a nightmare. It is believed that only about 10% of the cases of lyme disease are correctly diagnosed.
I have also been learning recently about the possibility of biotoxin or neurotoxin illness. A good book to read about mold poisoning is Mold Warrior. The DR. who wrote it, is the one who has a protocol for this illness. I would go to VA to see him but there is no safe housing there for me so I am thinking about exploring Dr’s here who can diagnose and treat it.
I do have a wealth of physicians here who can treat EI, just very little money with which to do it. I got quite sick from the phosphatydal choline and glutathione push in Atlanta but have had success here with taurine, vitamin c and trace mineral drips. Have only needed very limited oxygen therapy on an as needed basis only. Never did the UVB light treatments to my blood and no one here does it so really don’t know how good a therapy it really is.
I tested for neurotransmitters and found no surprise there, very low. Same time am learning about the methylation detox pathway (can’t afford the test). Many of the same supplements are needed for both so am getting double bang for my buck. Have done some detoxing, do feel better and am so far hanging in there with high pollen and fungus counts, was 11,000 total here yesterday!
I hope that there is something in what I am saying that helps you. There are so many directions you can go in and all of it is important. I have to take it slow and try to get the most bang for my buck. Hard to do with no insurance or job. Hope your situation is better.
Let me know how it goes for you,
Last edited by sharewithme; 04-01-2009 at 12:00 PM.
So happy for your response...meant so much to me!!!
Thank you, thank you for your response. So much I want to share. I have done some of the same TX's you have & also UVB.
I am sorry for what you've gone thru & so happy to hear that you are finding results & answers. You gave so many helpful tips, I appreciate that. Like you said, you have to be your own healer. I haven't had the opportunity to talk to others going thru this...so I do appreciate so much that you have responded. I think we go thru these experiences to help others...as difficult as they are for us. I have learned alot about mold exposure & have much more to learn....things I can teach my kids & others....something I was unaware of.
I hope we get the opportunity to talk further, there is so much benefit with sharing with others! Thanks so much.
Last edited by moderator2; 04-02-2009 at 09:28 AM.
Iím really glad we are able to connect and that my words feel supportive. Yours do too. It does make a huge difference to have someone who understands. Having you now as a friend lifts my spirits - you have a kind way about you. I look forward to many communications between us.
Do you feel that the UVB was of any help? And if so, what did it help with? Are you able to sauna? I was advised not to do it with lyme because of the way it affects the autonomic nervous system. Iíve already done a bunch of it with far infared and gotten benefit although it did wipe me out more than once.
I hear you loud and clear about educating and helping others. That is the real blessing to all this for me.
Thank you for your kind words....so nice to connect with others!
At first I did not think the UVB was good for me. I wanted to go gung ho & get them rolling & did 2 a week for 2 weeks (was told as long as there was a day between that was fine). The afternoon after the 1st I noticed I was really wiped out energy-wise but didn't make the connection (very low energy was pretty normal for me at that time). I cont'd for the 4, then realized this exhaustion was not getting better....it lasted 1-1/2 months!!! I was so exhausted, practically couch-bound during that time....no energy. I didn't feel it was right for me. Had a friend do some muscle testing on me which told me to wait awhile, let my body recover & try again more slowly...which is what I did. Enviro doc thought my body was just really toxic. I think I've surprised her alot. I waited a couple months & tried again....got a little more tired for a day or so but not exhausted. I haven't had anymore at this point but probably will again. I do feel my energy level has changed dramatically & I feel it has to be due to the UVB's. My EBV reaction had been very high & my hopes are that it knocked it down. The adminstrating nurse thought my reactions were strange but I talked w/another patient who said she went to bed the day of her UVB...she had lymes.
Enviro doc never suggested saunas to me (and they did them in the office). I do know that the hot shower (steam) really helps me feel better from my sinuses...not quite a sauna. Did you do the sauna at the doc's office? I've seen where you can buy them but my funds are limited these days.
I have a long way to go but having my energy back to a more functional degree has really helped me to keep going. So many changes & so many to go...I learn every day.
Hope you have a great Monday!!! Thanks for sharing. Peggster
I know that if you have die off from any bacteria like lyme or from candida, you can get sick from it and can then get better once all the waste is out of your system. I assume the same is true for viruses. Seems like that would be highly likely with this treatment as UVB light is used in the operating room to kill off bacteria, etc.
Glad you are better, to have more energy again is fantastic - a daily struggle for so many of us.
I have not heard of it being used anywhere else other than Dr in Atlanta. I know it is used in psoriasis treatments and I have talked to several people online who had their possessions treated after toxic mold exposure, they say it was successful at killing mold and eliminating mycotoxins. That's it, no one else until you.
I have done saunas as a way to detox. And found it to be pretty effective for the first layer of detoxing. I have recently been told it is not good for people with lyme though so I am not doing anymore until I find about that. I did not do sauna in Atlanta as I got too sick after the glutathione phosphatydal choline pushes. The Dr. told me I needed to go to the clinic in Dallas. She was the third Dr. to tell me that and since I kept getting so sick as to be literally debilitated every summer I decided I really had no choice anymore. My life was destroyed over and over again, I just got too sick, literally could not take care of myself and since I am alone this was super bad news. Turns out they were right as I am extremely allergic to the rain molds and the East lands of the U.S. are not a safe place for me because of this.
Did your ENT say whether you have candida in your sinuses? Is common for many of us with mold allergy and will cause many infections with lots of blockage until cleared up. If you have growths that is of course another matter, have heard that surgery is what is recommended for that but have no personal experience with that. Sorry to hear that is such a problem for you, I can sympathize.
Thanks for letting me know about the UVB, is interesting to finally get some feedback,
Last edited by sharewithme; 04-07-2009 at 10:24 AM.
I also live in the Southeast (Atlanta area), for the past several years I have been sick, sick, sick with everything from Vestibular balance problems, cognitive dysfunction, GERD, Klebsiella pneumonia, diverticulitis, neuropathy and more... never had a problem before I started a new job here.... finally it was determined that I had long term exposure to Stachyboytris at work. Needless to say I have had every test and drug which up to this time has not worked....
I am scheduled to start the I.V. treatment of phosphatidylcholine, Glutathione, and Alpha lipotic acid treatments.
Any insights, comments, ...
Sorry you are going thru a similar journey. I am still looking for answers....still suffering, although much better than when I first learned about mold hypersensitivity. I am seeking info presently about mold inspection/remediation of my home...no water intrusion but apparently enough dead spores to create debilitating symptoms for me. Have you heard any good remediators, etc in our area? It's such a drastic decision to move out, leaving all belongings behind or putting more $ trying to get the house good enough. Would love to hear from others who have had positive outcomes with this illness. I have had a few UVB treatments & Glutathione push...I feel the UVB helped with the Ebstein Barr that was creating alot of fatigue for me. Hope that helps a bit. Good luck with your treatment. Share has offered alot of great info of her experience...I am grateful to her for her sharing & knowledge.