Julie Rehmeyer's Mold Avoidance Recovery Story

[Cort]

Cort submitted a new resource:

Julie Rehmeyer's Mold Avoidance Recovery Story - Award winning journalist finds to her surprise that mold avoidance works

Julie has written several pieces on ME/CFS.In one she described her experience with mold avoidance:

As a result, I got contacted by a patient who argued that mold was actually a big part of the problem for many, maybe most, maybe even all ME/CFS patients. And she linked me to a blog post about someone who was trying mold avoidance — extreme mold...

Read more about this resource...

 

[JennyJenny]

I am pretty sure she has Environmental Illness, not ME/CFS.

I believe in the hit and run Mady Hornig virus theory and the SEID diagnostic criteria. The sudden virus and never recovering or never recovering from Mono or other sudden flu flu-kike virus is true ME/CFS and even though mold can contribute to our illness it is not Environmental Illness and EI is not ME/CFS. Although heaven forbid, you can have both.

And even though I also believe that the categorizing of ME/CFS that just came from Australia is correct and it can relapse and remit and remit and so on, I don't think mold avoidance is the answer for recovery though mold can contribute to the exasperating of them. I think we have something eating at our neurons just like the medical information that just came out that the family of herpes viruses are now found to be destroying neurons and behind Alzheimer's and MS and other neurological disorders and just may be what is happening to us ALONG with genetics allowing it to happen instead of being able to fight this off.

 

[Cort]

I am pretty sure she has Environmental Illness, not ME/CFS.

I believe in the hit and run Mady Hornig virus theory and the SEID diagnostic criteria. The sudden virus and never recovering or never recovering from Mono or other sudden flu flu-kike virus is true ME/CFS and even though mold can contribute to our illness it is not Environmental Illness and EI is not ME/CFS. Although heaven forbid, you can have both.

And even though I also believe that the categorizing of ME/CFS that just came from Australia is correct and it can relapse and remit and remit and so on, I don't think mold avoidance is the answer for recovery though mold can contribute to the exasperating of them. I think we have something eating at our neurons just like the medical information that just came out that the family of herpes viruses are now found to be destroying neurons and behind Alzheimer's and MS and other neurological disorders and just may be what is happening to us ALONG with genetics allowing it to happen instead of being able to fight this off.

That's interesting about Environmental Illness. About 15 years in with ME/CFS I developed a really severe case of multiple chemical sensitiviities. (It happened oddly enough after I pushed myself really hard to exercise and was able to for a bit).

While I do think there's a connection between ME/CFS and MCS I think its probably tangential. The severe MCS I developed never affected in the slightest my ability to exercise or my energy levels - it just created all sorts of other problems.

I thought I never fit the mononucleosis/viral trigger mode until I learned that some cases of mono present gradually with increasing fatigue and muscle pain. I certainly had the sore throat that it often causes.

I think there are many different kinds of ME/CFS.....there may be different kinds based on what kind of infection you had. Different infections would trigger kinds of ME/CFS. Another confounding factor is the fact that an infection today can have results 5 years in the future. IM increases the risk for MS decades later...

One thing about Julie is that she could not exercise prior to mold avoidance. When I visited Dr. Rea in Dallas he had MCS/EI patients on the bikes pumping away prior to going into the sauna to sweat the chemicals out. They would hit the bike - do the sauna - hit the bike - do the sauna.

I tried to hit the bike and do the sauna ONCE...

The rest of the time I just did the sauna

 

[JennyJenny]

I think there are many different kinds of ME/CFS.....there may be different kinds based on what kind of infection you had.

Yes, I think EBV is a springboard for many of us. I had the worst case of MONO the doctor ever saw and I actually think it got that bad because I already had Fibro. This was 1980 and I do believe my family doctor (as they were called back then) sent me to an infectious disease specialist as I remember an entirely different doctor navigating everything but it was my family doctor that was a former military doctor who pulled me from school and work and for several months I was told do nothing but sleep. Period. A few months later and I went back to school part time and then when school let out I was allowed to return to work. And the doctor said to me, you will never have the same energy you once had and you will never be the same. Because as we all know, they KNEW something was going on back then and that you could be compromised for life and whether he knew it was ME or not I don't know. Plus back then your family doctor was a one man show and they really did treat everything especially if a former military doctor that REALLY had to be ready for and up on everything.

And then it took them 24 years to Dx me with CFS and Fibro Dx 2-4 years prior (can't remember) and I had that for 25 years before Dx'd. )This prior sentence is truly a grammatical mess as I am sure much of what I wrote and usually write.) Like my medical life since at least age 13.

And yes, I believe ME/CFS can onset due to many issues but I think in its truest sense we were hit with a virus that our immune and neuro-immune genetics were waiting for. Otherwise everyone with EBV or H1N1 would be like us.

 

[Susan Hampson]

I did a mold sabbatical . I had complete remission of symptoms after 2 weeks. Hiked 3 miles no pem. Stayed in Tecopa California. . When I came back to NJ I was pretty well for a month. Felt great and was making plans. Then.... after about a month cfs crept in . I am back to cfs. . I reacted to my winter coats and my car. From what I have read from Erik Johnson and Lisa Peterson I believe the outdoor " pollution (mold)) in the winter in NJ is messing up my immune system. My original diagnosis was fibromyalgia. I got rid of the fibro by using a modified Pridgen Protochol (( valtrex 500mg and Celebrex 200mg) .

I had 2 day day exercise test done showed cfs. One by Dr Betsy Keller and one at Georgetown by Dr James Baraniuk. We are selling out large home and downsizing so I can travel west again next winter. After feeling normal there is no going back. Hopefully next year I will write my recovery story.

Plan on tent camping over Easter break with my son . He has Aspergers .

 

[Susan Hampson]

I had high igg antibodies to Epstein Barr. After this I pushed my GP to give me valtrex and Celebrex. I think thiere is an insult to the immune system and then the parasites viruses Lyme candida etc get out of whack. I had treated the candida Epstein Barr parasites etc which did help me improve but by avoiding the offending agent ( man made chemicals interacting on a large scale with the modern world, ( I think everyone's theories are correct like eight slices of a pie. In general , )
I become well again. . Them back to civilization cfs crept in.

 

[Cort]

Good luck!

I did a mold sabbatical . I had complete remission of symptoms after 2 weeks. Hiked 3 miles no pem. Stayed in Tecopa California. . When I came back to NJ I was pretty well for a month. Felt great and was making plans. Then.... after about a month cfs crept in . I am back to cfs. . I reacted to my winter coats and my car. From what I have read from Erik Johnson and Lisa Peterson I believe the outdoor " pollution (mold)) in the winter in NJ is messing up my immune system. My original diagnosis was fibromyalgia. I got rid of the fibro by using a modified Pridgen Protochol (( valtrex 500mg and Celebrex 200mg) .

I had 2 day day exercise test done showed cfs. One by Dr Betsy Keller and one at Georgetown by Dr James Baraniuk. We are selling out large home and downsizing so I can travel west again next winter. After feeling normal there is no going back. Hopefully next year I will write my recovery story.

Plan on tent camping over Easter break with my son . He has Aspergers .

 

[Lissa]

Bumping this thread..... Julie's book is out! WOOHOO!!!

 

[Cort]

Bumping this thread..... Julie's book is out! WOOHOO!!!

I'm about 2/3rds through...its a great read...she is quite an author!

 

[Lissa]

I'm about 2/3rds through...its a great read...she is quite an author!

My copy was delivered last night. Unfortunately I had already left the house (which is currently being remediated.... been out of it for 3 full months now!) and was headed back to our temporary apartment when I passed the UPS truck. My husband stopped by the house on his way to work this morning and grabbed it for me. He says it looks great--- and he threatened to get the jump on reading it first! Hahaaaaa! There may be dire consequences!!! I can't wait to get my hands on it!

 

[Susan Hampson]

I am buying a few copies. I have relapsed a bit.


Got lazy and slacked off on the mold Avoidance. The weather being rainy and cool seems to make me much worse . We are traveling to London and Paris at the end of June. . I have wanted to go to Paris my whole life . I felt like I was dying and wanted to see Paris before I died. Now I just want to go back to Death Valley.
Everyday I fight the urge to get into my car and drive west.

I do much better in hot sunny weather. If I start going downhill again in the fall I plan to travell by myself for a bit.
I was wondering if anyone else " left" THIER family to do this. It is temporary and I believe necessary for me to get better. It seems to be a social taboo. My kids are teenagers and self sufficient.
I love my husband but I am compelled to go after a remission in Death Valley.


Reading Julie's storry lead me to reading about Erik Johnson and mold. An environmental trigger makes sense due to the Cfs " outbreaks".

 

[Hip]

I just had a thought: I wonder if mold avoidance in the desert does indeed reduced mold exposure, but not in the way that people think. The usual idea is that the dry desert air is free of mold spores and mold mycotoxins, so taking a vacation in the desert reduces mold exposure, and thus the symptoms of mold sensitivity/allergy/chronic inflammatory response syndrome (CIRS).

But I thought of a possible alternative (or additional) explanation: that the hot dry desert air might help kill off any chronic mold infection in the nasal and sinus cavities — mold infections that Dr Joseph Brewer hypothesizes may exist in ME/CFS patients' noses.

Breathing hot dry desert air is known to dry out the nasal mucous membranes, and since mold is killed when there is no moisture, this may kill off these nasal infections more effectively that the antifungal nasal sprays that Dr Brewer is experimenting with as an ME/CFS treatment.

If this is true, if the hot dry desert air can improve ME/CFS or CIRS symptoms by killing off a sinus and nasal mold infection, then perhaps you would not need to go to the desert: using a domestic dehumidifier unit and an electric air heater in your room at home to create the same dry air conditions of the desert might work just as effectively. Dr Myhill says here that once the air humidity goes below 40%, the mold in your home is killed off, and she recommends dehumidifiers as an alternative to taking a vacation in a mold-free environment like a desert.

OK, a dehumidifier in the home is not as exciting as a desert adventure, but might be more sustainable and convenient in the long term.


According to this dehumidifier capacity online calculator, in order to get my own room, which is 35 cubic meters in size, down to a very dry 1% humidity (when the outside humidity is 80%), I would need a dehumidifier with a performance of around 25 pints per day (of water extracted from the air).

Or to get the humidity down to 25% (still pretty dry), then a dehumidifier with a performance of around 17 pints per day would suffice.

(I am not sure how accurate that online calculator is; I think it would also depend on how much fresh air from outside enters the room every hour — which will depend on whether you have an open window or ventilation).


According to this chart, at 80% humidity and a temperature of 20ºC, the 35 cubic meters of air in my room would contain a total of around 480 ml (0.8 pints) of water vapor.

 

[AquaFit]

Very practical advice Hip, thank you! I know of someone who moved out of the Arizona desert because she contracted ME after being exposed to desert dust. Always something!

https://u-earthblog.com/2015/06/11/...ert-dust-are-they-dangerous-for-human-health/

 

[Susan Hampson]

We have done dehumidifier 's air filters, infrared saunas, bioidentical hormones. I have a light box. I am even thinking of trying a tanning bed. I am 53 years old and was careful about sun exposure. At this point I just want to feel better.

It went to 80 and sunny. Stopped coughing and felt well. Still get tired but at least I feel ok for about 1/2 of the day. If I were just tired I would just deal with it for a few more years. I am on disability was a community pharmacist.

This is bearable to me. Made of an antifungal/ antibioticnasal spray that seems to help a little. I made this up myself using antibacterial and antifungsl models.

The part I cannot stand is my loss of cognition. Feel like a zombie . Can't even interact with my family 1/2 of the time. Have drifted apart from friends and feel very lonely. Can't make plans . Feel physically sick. If I try to push through it I have a complete meltdown.

I am taking showers if I feel triggers. For example I was at a supermarket and my head fogged up felt sick. Went home and took a shower and felt better. " decontamination " seems to help. I am going to start tent camping in my Dad's yard again. We had a cool rainy weather streak and I got really much sicker.

We are packing up our possessions putting them into storage and. Moving to an apartment temporarily. We need to downsize anyway. I have joined a mold avoiders Facebook group and I can really realte to their experiences.

 

[grapes]

I just had a thought: I wonder if mold avoidance in the desert does indeed reduced mold exposure, but not in the way that people think. The usual idea is that the dry desert air is free of mold spores and mold mycotoxins, so taking a vacation in the desert reduces mold exposure, and thus the symptoms of mold sensitivity/allergy/chronic inflammatory response syndrome (CIRS).

But I thought of a possible alternative (or additional) explanation: that the hot dry desert air might help kill off any chronic mold infection in the nasal and sinus cavities — mold infections that Dr Joseph Brewer hypothesizes may exist in ME/CFS patients' noses.

Breathing hot dry desert air is known to dry out the nasal mucous membranes, and since mold is killed when there is no moisture, this may kill off these nasal infections more effectively that the antifungal nasal sprays that Dr Brewer is experimenting with as an ME/CFS treatment.

If this is true, if the hot dry desert air can improve ME/CFS or CIRS symptoms by killing off a sinus and nasal mold infection, then perhaps you would not need to go to the desert: using a domestic dehumidifier unit and an electric air heater in your room at home to create the same dry air conditions of the desert might work just as effectively. Dr Myhill says here that once the air humidity goes below 40%, the mold in your home is killed off, and she recommends dehumidifiers as an alternative to taking a vacation in a mold-free environment like a desert.

OK, a dehumidifier in the home is not as exciting as a desert adventure, but might be more sustainable and convenient in the long term.


According to this dehumidifier capacity online calculator, in order to get my own room, which is 35 cubic meters in size, down to a very dry 1% humidity (when the outside humidity is 80%), I would need a dehumidifier with a performance of around 25 pints per day (of water extracted from the air).

Or to get the humidity down to 25% (still pretty dry), then a dehumidifier with a performance of around 17 pints per day would suffice.

(I am not sure how accurate that online calculator is; I think it would also depend on how much fresh air from outside enters the room every hour — which will depend on whether you have an open window or ventilation).


According to this chart, at 80% humidity and a temperature of 20ºC, the 35 cubic meters of air in my room would contain a total of around 480 ml (0.8 pints) of water vapor.

Very interesting.....