Do Abnormal Mold Markers Really Mean Exposure to Mold/Toxins?

[SueJohnPat]

I wouldn't bother with the HLA DR for the reasons already stated. It's also my understanding that C3a and C4a are not specific, as Shoemaker implies. However, I know a number of people who tested greater than 20,000 for C4a, started practicing serious avoidance, and saw those numbers drop fairly quickly. This was almost always accompanied by an improvement in health, and often a decrease in PEM symptoms. Though anecdotal, this is one of those interventions that seems to produce consistently positive results; probably more so than anything else I've come across on PR.

Had I not addressed mold and moved from a toxic house I'd still be in the dark ages of my illness. Since implementing avoidance I've virtually eliminated a nasty case of electrical hypersensitivity, halted the progression of my food sensitivities, and regained my tolerance of medicines. All of which has enabled me to make further health gains. I also have reason to believe it factors into my PEM. I shudder to think where I'd be without it, which is why I try to drop an endorsement for mold avoidance whenever it comes up on the forums.

I am doing a mold sabbatical in Death Valley. I did not have any of the " test" to " prove I have mold illness but, I was ill with a cfs like illness over 20 years ago while working in an old pharmacy. ( the previous pharmacists was 34 years old and died of a massive infection after surgery for a hernia. ) I changed stores and got better.
I am just following the Protochol ( on cholestyramine now) . Our current home has some mold and water damage ( which we remediate but still need to do more. , no one else is " sick"
I have enough symptoms which have improved with mold avoidance and cholestyramine , fish oil etc.

As a pharmacists I was trained to rely on double blind studies, period. however with this illness there has been virtually no money for real research spent until recently. Frankly I think it makes sense that I have some underlying inflammatory condition that increases oppurtinstic infections. I call it aids " lite" Glad to here you improved .

I only started to get slightly better with a few really noticible long term improvements by listening to my gut ( -and treating it!) I live in New Jersey ,

 

[flybro]

I'm allergic to penicillin, and often wonder how badly i'm affected by mold.

I have fibro and mcs dx from uk rheumy from uk cfs clinic.

I think i've noticed symptom flares at this time of year near, damp corner in garden, where fence has lot of bright greeny/yellow powdery stuff. Is this a likely cause of increased flu symptoms?

Also have a constant battle with mold in bathroom. I do have very lengthy baths too, and often trigger night sweats after baths.

I know i'll never move again, unless it's in a box, so no option on that.

What other options are available to me? ANYONE? thank-you.

 

[Gingergrrl]

I am doing a mold sabbatical in Death Valley.

Best wishes with this and keep us posted how it goes.

I did not have any of the " test" to " prove I have mold illness

We had environmental testing on our old unit which confirmed extremely high levels of stachybotrys (toxic black mold) and 19 other types of mold. We had to move and get rid of all of our belongings. I did some medical tests with a mold specialist and ended up using nebulized glutathione and some mild binders to try to detox the mold. I have not re-read this thread and apologies if I already stated this further up! I have calcified nodules in my lungs that indicate mold plus other nodules that are being monitored b/c unclear what they are. For us the mold exposure was blatant but the testing confirmed it on all levels. Am sorry you are also going through this, it was rough.

I'm allergic to penicillin, and often wonder how badly i'm affected by mold.

I am also allergic to penicillin but never thought of the connection before .

What other options are available to me? ANYONE? thank-you.

Am not sure if you are in an apt or own your own home but in apt, you could ask your landlord for mold testing and remediation (although many do not cooperate with this even though it is the law). In a house it is easier and you can initiate the process on your own. We ended up having to pay for most of the testing ourselves in former rental b/c landlord would not cooperate after the initial air testing that he ordered came back highly positive for 19 kinds of mold. He brought in remediators who did such a crappy job that we paid for testing of the air vents after they were done and the numbers had gone up vs. down. In our case, we had to move b/c I was so ill from the mold, I was no longer able to eat food.

 

[Dufresne]

I am doing a mold sabbatical in Death Valley.

I think the worst part of my trip to Death Valley was having to use the internet at the general store and being subjected to an endless loop of frontier-tweaked Americana. They ran two CD's continuously and they weren't even on shuffle. All day, every day. I imagine the employees had, against all odds, developed the ability to block it out. It still gives me chills.

Oh! Susanna, do not cry for me;
I come from Alabama, with my Banjo on my knee.

 

[SueJohnPat]

Best wishes with this and keep us posted how it goes.

I am doing about 3 packs of cholestyramine a day . We got a humidifier and close the basement door. I don't go down there anymore and I have done a few coffee enemas. I have been having a big improvement . Played golf for two days in a row ( never did this before for 7 years, was afraid but I did not have payback) where a few weeks ago could barely leave the house. I think my car is " bad" ( I told my husband to switch cars with me., ) I had left the sun roof open a few times when it has rained. Will have car detailed to see if this helps.

I told my husband who has depression , son has add. Husband is not convinced that the mold could be making me so sick but he is coming around that I am improving.
Husband is not quite convinced but I a, starting to believe this is it.

I and I am paying attention to how I feel around " stuff" Took off a sweater that I had air dried down the basement. I leave for Death Valley on Oct 16th. Went down the basement today with a guy who is going to throw stuff out. ( feel sick a little while later , took a shower washed my hair changed clothes. Feel a little foggy in the head.

Will let you know how I do after Death Valley. At this point I want everyone to leave the house. Thinking maybe my sons add and my husbands depression may improve.


I think I am cautiously optimistic. I think if I keep improving we will have all the envoiromintsl testing done. Financially it is the worst time I wish I had done this in the beginning but.... it is very insidious .
Thank You everyone here for your advice and support.

We had environmental testing on our old unit which confirmed extremely high levels of stachybotrys (toxic black mold) and 19 other types of mold. We had to move and get rid of all of our belongings. I did some medical tests with a mold specialist and ended up using nebulized glutathione and some mild binders to try to detox the mold. I have not re-read this thread and apologies if I already stated this further up! I have calcified nodules in my lungs that indicate mold plus other nodules that are being monitored b/c unclear what they are. For us the mold exposure was blatant but the testing confirmed it on all levels. Am sorry you are also going through this, it was rough.



I am also allergic to penicillin but never thought of the connection before .



Am not sure if you are in an apt or own your own home but in apt, you could ask your landlord for mold testing and remediation (although many do not cooperate with this even though it is the law). In a house it is easier and you can initiate the process on your own. We ended up having to pay for most of the testing ourselves in former rental b/c landlord would not cooperate after the initial air testing that he ordered came back highly positive for 19 kinds of mold. He brought in remediators who did such a crappy job that we paid for testing of the air vents after they were done and the numbers had gone up vs. down. In our case, we had to move b/c I was so ill from the mold, I was no longer able to eat food.

 

[SueJohnPat]

Hello , I got back from Death Valley November 2nd. I did not experience extreme reactions to much. I did have a bad feeling when I put on a second hand mink coat which I lived in last winter. I think I am reacting to " mystery " toxin . Ugh! My house seems ok. My car is not good I avoid driving it. I drive my husbands.

While in Death Valley I felt more " normal" than I have in years. By the end of two weeks I hiked a 3 mile trail up part of a mountain ( felt it was probably not a great idea , did not know the trail got so steep and narrow.)
After the hike I just felt good! I was overjoyed I never thought I would be able to do anything like that again.

I felt well for about 3 weeks . I baked and shopped and was making plans to return to work but...... Then symptoms started creeping up on me.
Thanksgiving went to in laws for Thanksgiving. I got emotional and overreacted. Some of my in laws say the n word and yell at the tv. I used to just ignore it but my son is from South Korea. My husband gently tried to tell them to knock it off but it is not always successful.
They mentioned about my kids listening to n ( rap) music. I thought it was a joke but my older son has better social skills then I do and said they were really mad. I do not understand this at all. I know this is offensive but I was catastrophising everything and started crying. My main symptom from mold is I get very emotional over annoyances.

Went outside and cried felt why do I have to spend Thanksgiving with people who scream the n word at the tv.
I could tell this was a mold reaction because it was so intense. Maybe they have heads full of mold.
I felt the need to stay outside.

I am getting that " cfs" feeling again.I saw them last night in Philadelphia. Next day felt blah. Detoxed coffee enema fish oil Epsom salt bath. Feel better today. They live in the city of Philadelphia. I always attributed feeling lousy after seeing them because we have nothing in common which never bothered me that much before I got ill. My husband never mentioned to them that I went away.

I first became ill when my mother in law was living with us ( she would watch my children) and I could not deal with her living with us going through really bad pain and tiredness. She thought I was miserable and I probably was, Could not stand feeling judged she did not understand how much my career meant to me. She told me all I care about is money. I liked earning money but I loved my job as a community pharmacist.

Maybe being in Philadelphia I get reactive, maybe I get a big dose of mystery toxin and I feel crazy. I thought is was my in laws which I was never close to but I never get upset when I see them at the shore or the beach.

I think I am reacting to outside air. This is really overwhelming because It is impossible to avoid.
Anyone else have this issue and how do you live like this.
After Christmas I am going to stay at a friends house to see if it is my house I am reacting to or the whole Philadelphia area.

 

[nystew]

@Valentijn Thanks for your reply. I had seen similar comments about Dr. Shoemaker comparing HLA types to worldwide types too, although I don't remember where I saw it either. Do you know of any postings that can really confirm this? Also, even if 90% of those in the States have the HLA type that contributes to mold susceptibility, that doesn't necessarily take away from his treatment results. In essence, I'm just trying to figure out if ANY of the tests that Dr. Shoemaker recommends are worth it, or if they would just be reflective of general inflammation. I have also seen info on Gordon Medical Associates' website that talks about them successfully using Shoemaker protocols in treatment. There is also controversy about the usefulness of RealTime Laboratories tests for mold toxicity, but that is another story. So, any elaboration on the general topic would be appreciated.

Thanks,
Scotty81

Real Time labs can make any test positive for mycotoxins. I do believe my illness is from long term mold exposure but not everyone with ME/CFS has been exposed. Just know that since I've been back to my apartment after 2 years out, it all started again. There is a facebook group Reclaiming Health. I was treat in US by Dr Irene Grant in Tarrytown. She treated me with ampoterincin B and antifungals. Brewer and Shoemaker protocol very different. Grant said becasue i have MTHFR I don't detox well. I don't know what to think anymore. Check out Sharon Kramer Noonan. She exposes a big cover up in the justice dept. about it.

 

[nystew]

That's amazing! So you moved to a new building and left every possession behind including books, documents, clothes, etc...?

Is your mold Doctor a Shoemaker certified Doctor or does she do her own thing?

That type of situation is appealing as it is not so extreme. It does sound expensive -- the move and leaving all behind etc. I would do that. I also think for the same money I could do Ampligen. Both would be even better!

In the US Ampligen just concluded the second phase trial in November.