Detection of Mycotoxins in Patients with CFS

[pirt]

The RTL test I was referring to is a urine test for mycotoxins to see if they're present in your body.

Oh sorry, I did not. After nearly getting in a fist fight to get the ENT to write the scrips and the costs involved with RTL tests... I'm just going on how I feel.

 

[pemone]

I'm curious how many of you on the Shoemaker protocol have a lot of experience taking cholestyramine, and are any of you using a protocol for it that involves taking days off?

Shoemaker's standard protocol teaches that you need to take cholestyramine every single day, two to four times a day (based on factors like age). I am not convinced that this is necessary. You should be able to take cholestyramine for some contiguous number of days, and you get the benefit of clearing some of the toxins during this time on the binder. The days that you are not taking cholestyramine, obviously you do reabsorb toxins. But the overall net effect should be to start clearing toxins from your body, as long as you are not getting re-exposed to new toxins. Sure, you clear toxins less rapidly if you take days off.

Why would you want to take some days off between cholestyramine rounds? The reason is because cholestyramine interferes with fat absorption and - critically - fat soluble vitamins. Those are pretty critical things and I would tend to be cautious and want to have plenty of days when I can absorb those nutrients.

The analogy to this would be a chelation protocol, where you take a bile binder or a chelating agent for a limited duration, then take time some time off to let the body re-absorb critical minerals. No one would ever say you are not chelating just because you do not take the chelator without any pause for months.

 

[Gingergrrl]

Sorry for jumping in this thread on page 47 and asking questions that I am sure have already been answered but am too tired to read the whole thing. I have a few questions after finding ongoing mold in my home for the third time:

1) is Real Time Labs the most accurate test? Is it ever covered by insurance?

2) what is the medical treatment for mold if you test positive (in addition to ensuring it is removed from home.)

Thank you in advance to anyone who responds!

 

[Forebearance]

You might want to ask this in the "Addressing Biotoxins, ..." section, @Gingergrrl.

 

[Gingergrrl]

Sorry, I thought I was in the biotoxin section this time! Not sure how to move my post and am not on my own computer right now.

 

[Forebearance]

No prob! I don't know how to move it, either. I love your dog, by the way.
I'll try to go answer your questions in the appropriate section.

 

[foxy loxy]

Just saw a Lyme specialist in MD and asked him what he thought about the Brewer Protocol. He said he never saw any patients benefit from it... I told him I have talked to a handful of Brewer patients that swear by it... He didn't down it but seemed skeptical of everything... and definitely didn't seem to approve of Shoemaker either for that matter!?

He thought Cholestytamine helped brain inflammation sometimes but not through "toxin removal." He rattled off something too lofty for me to follow... interesting how much the medical world disagrees! Leaves the poor patients feeling very confused.

I am definitely a curiosity case. He is making me get a CT scan of my nose, not sure what he thinks he is going to see? Anyone else get this done? Can you see a mold infection?????? I definitely am not a congested or allergic style patient, but I do have odd neuro gnawing sensations in my nose!

Thinks possible dysautomia (POTS) so getting checked for that. Seems like it can cause a bunch of neuro probs...

He also is having me retest for mold mycotoxins at the infamous RealTime Labs... oh boy!!! and this time he says it is only two hundred bucks... can anyone vouch for this? sigh... I wish money grew on trees!!!!

 

[Forebearance]

Hi Roxanne,

Well, I think we CFS and Lyme patients have to rely on our own good judgment a lot. We can often be more up on the latest treatments than some doctors are. It's possible this guy is not doing the Brewer protocol in exactly the same way as Dr. B. does it.
Yes, that sounds around the same amount I paid for the second RTL test.
I hope you get something worthwhile out of this doctor!

 

[Ifish]

Just saw a Lyme specialist in MD and asked him what he thought about the Brewer Protocol. He said he never saw any patients benefit from it... I told him I have talked to a handful of Brewer patients that swear by it... He didn't down it but seemed skeptical of everything... and definitely didn't seem to approve of Shoemaker either for that matter!?

He thought Cholestytamine helped brain inflammation sometimes but not through "toxin removal." He rattled off something too lofty for me to follow... interesting how much the medical world disagrees! Leaves the poor patients feeling very confused.

I am definitely a curiosity case. He is making me get a CT scan of my nose, not sure what he thinks he is going to see? Anyone else get this done? Can you see a mold infection?????? I definitely am not a congested or allergic style patient, but I do have odd neuro gnawing sensations in my nose!

Thinks possible dysautomia (POTS) so getting checked for that. Seems like it can cause a bunch of neuro probs...

He also is having me retest for mold mycotoxins at the infamous RealTime Labs... oh boy!!! and this time he says it is only two hundred bucks... can anyone vouch for this? sigh... I wish money grew on trees!!!!

It seems your doctor does not understand the time lines involved. There doesn't seem to be a reason to retest for mycotoxins this soon. My oldest daughter functioned fairly well before treatment and it took her 8 month before any improvement. No one in my family retested within the first year of treatment. I did retest after a year, but the main reason for doing so is to try to determine the effect of using an infared sauna.

One problem with the lyme doctors is that this new mold information raises the possibility that many present and past lyme patients never had lyme at all. It would be hard to accept the fact that you have treated so many patients for a disease they never had. My family of four treated for lyme disease intensely for four years before giving up on it altogether. But now we are improving with Brewer's mold treatment. I'm not saying you don't have lyme, I'm just saying this might be the reason for your doctor's reluctance rather than a well researched rejection of the mold paradigm.

Many lyme doctors now say mold is a cofactor preventing successful lyme disease treatment. Very few are willing to say at least some patients never did have lyme but were suffering from mold exposure.

 

[Ifish]

Brewer's paper has finally been published. I was in to see him last week and there is quite a number of exciting things going on. I will report on that when I have time.
The unfortunate aspect of this study is that so many had to drop out due to side effects. During my visit with him I asked if he feels Nystantin is equally effective as Ampho B. He replied that he believes they are equally effective. He further stated that he may consider publishing another study on the efficacy of Nystantin.

The paper was published here: https://globaljournals.org/papers/

Here is the full text: https://globaljournals.org/GJMR_Volume15/5-Intranasal-Antifungal-Therapy.pdf

The following is the abstract:

Intranasal Antifungal Therapy in Patients with Chronic Illness Associated with Mold and Mycotoxins: An Observational AnalysisJoseph Brewer, Dennis Hooper, Shalini Muralidhar
GJMR (2015) Volume 15 Issue 2: 29-33.
Category: NLMC Code: QV 252 · Added: Apr 24, 2015 · Rating: οο
· Link

Exposure to mycotoxin producing mold and mycotoxins can be associated with numerous adverse health consequences. We previously reported that patients with chronic illness frequently had a history of prior exposure to water damaged buildings (WDB) and mold. Additionally, the vast majority of these patients had mycotoxins present in the urine. We have postulated that the mycotoxin producing molds were likely harbored internally in the sinuses of these patients. In the present analysis, patients with chronic illness and a positive urine mycotoxin assay were treated with intranasal antifungal therapy, either amphotericin B (AMB) or itraconazole (ITR). AMB was associated with local (nasal) irritation adverse effects (AE) in 34% of the cases, which resulted in discontinuation. In patients that remained on therapy without AE, we found that 94% improved clinically. Additionally, we found that the urine mycotoxin levels decreased substantially in patients that improved on therapy. Similar findings were seen with ITR, however the number of patients treated was much smaller.
Keywords: toxic mold, mycotoxin, chronic fatigue syndrome, intranasal antifungal therapy.

 

[Gingergrrl]

Brewer's paper has finally been published. I was in to see him last week and there is quite a number of exciting things going on. I will report on that when I have time.

@Ifish Sorry for stupid question, but where is Brewer located? Is there anyone comparable in Los Angeles area or does Brewer do Skype consults? I have not had a chance to read any links yet.

Many lyme doctors now say mold is a cofactor preventing successful lyme disease treatment. Very few are willing to say at least some patients never did have lyme but were suffering from mold exposure.

My doctor (actually a total of three Drs since 2012 including my current ME specialist) all do not feel that I have Lyme. I have been tested twice and am negative on all bands and also negative on bartonella and babesia. My history is having a serious injury (neurotoxic and mitochondrial damage from Levaquin) followed closely by severe mono from EBV. I test positive for other viruses including coxsackie B4.

I have been exposed to mold in my home for close to a year (long story and this is third remediation attempt- we do not own and are at the mercy of the owners who we are getting ready to sue if they do not fully and quickly correct it this time.) I believe the extra burden of the mold has given me histamine issues and not allowed me to fight these viruses (I am still IgM positive for EBV and VZV three years after mono) but I do not believe that I have Lyme and neither do my doctors.

So not every doctor tells you that you have Lyme (although my ME doctor has and will tell someone they have Lyme when their symptoms and tests match up which mine don't.)

 

[foxy loxy]

Can't wait to hear what all you learned Ifish! Here is me hunkering down for the long haul. It just seems crazy, because I am not "stuffy" or seem to have allergies of any kind! I decided to ditch the test, until at least my year is up. I am going to keep at this! sniiiiiiiiiff!!! Gurgle!!! I am like five months in!! Can't notice any improvement yet...but ANY would be welcome!!!

ps. Sounds like the Mupiricin possibly breaks up biofilm! I think I better stick with that...

 

[foxy loxy]

BTW anyone notice hair loss on the protocol? My haaaaaaair!!!!!! is slowly vanishing... hate it!!!

 

[Akhess01]

Hey guys- been awhile. Serious question for hose of you on Brewer and maybe IFISH will know: anyone experience facial numbness on the protocol? I have been consistent in it for three months and two weeks ago woke up with facial numbness in my right side. Was hoping it would pass but it's still persistent. I called ASL pharmacy and the pharmacist said numbness is listed as a side effect but that's all she could tell me. My pcp of course told me to call my prescribing doc but I am the only patient the doc prescribes to so he has no idea. I left a message for Dr Brewers nurse to call me but I'm thinking it is highly unlikely she will call considering I'm not his patient. Anyone help me out here???

 

[Ema]

BTW anyone notice hair loss on the protocol? My haaaaaaair!!!!!! is slowly vanishing... hate it!!!

I just read that high TGF-b1 is associated with hair loss...many with mold illness have this.

 

[pemone]

The cost of the Realtime urine mycotoxin test is $699 including shipping from within the US. If you're outside the US you pay for shipping the sample.

Regarding the mold antibody tests, I had a blood test done through Quest for less than $100. It tests IgG against 14 or 15 molds.

The IgG tests are showing immune response that leads to antibody development. I thought the whole point of the HLA gene problem was that certain types of biotoxins do not get seen by the immune system, leading to perpetual cytokine and inflammatory responses.

The Realtime Labs urine mycotoxin test is looking for presence of the actual toxin, not the antibody response to the toxin (which would not be present in patients that have high measured levels of the mycotoxin!).

Having said this, the Realtime Labs test seems absurdly expensive for what it measures. Has anyone found alternatives to this test? It's measuring three metabolites in urine. $700 for that is too expensive. Do we have any good alternatives?

 

[Ifish]

@Ifish Sorry for stupid question, but where is Brewer located? Is there anyone comparable in Los Angeles area or does Brewer do Skype consults? I have not had a chance to read any links yet.

Dr. Brewer practices in Kansas City, Missouri. The last I have heard is that the expected waiting time for a new patient to be seen is in excess of two years. One possibility in your part of the country is Janette Hope in Santa Barbara. If you google her name you will find some papers she has written about mold related illness.

It is my understanding there is a second doctor in the Kansas City area that is gearing up to treat patients suffering from mold related illness. However, it is early in the process and I don't feel I should broadcast his name. I wll be glad to provide his name by private message to anyone that would like to look into this.

 

[psz]

The IgG tests are showing immune response that leads to antibody development. I thought the whole point of the HLA gene problem was that certain types of biotoxins do not get seen by the immune system, leading to perpetual cytokine and inflammatory responses.

The Realtime Labs urine mycotoxin test is looking for presence of the actual toxin, not the antibody response to the toxin (which would not be present in patients that have high measured levels of the mycotoxin!).

Having said this, the Realtime Labs test seems absurdly expensive for what it measures. Has anyone found alternatives to this test? It's measuring three metabolites in urine. $700 for that is too expensive. Do we have any good alternatives?

There is one done by Biotrek for $185 - I did it through americanmedicallabs.com. They used to use Realtime Labs but switched to Biotrek some time after July 2014 (when I first used them).

The Biotrek test is similar to RTL in the sense that it measures ochratoxin, aflatoxin and trichotheces. Additionally it measures citrinin.

I don't have too much information about it though, e.g. how did they get their normal range and whether the results are measured in relation to creatinine.

 

[Forebearance]

BTW anyone notice hair loss on the protocol? My haaaaaaair!!!!!! is slowly vanishing... hate it!!!

Now that you mention it, I've been having more hair loss in the past few weeks. Luckily I started with a lot of hair. That is too bad that you are experiencing this!

 

[Forebearance]

Hey guys- been awhile. Serious question for hose of you on Brewer and maybe IFISH will know: anyone experience facial numbness on the protocol? I have been consistent in it for three months and two weeks ago woke up with facial numbness in my right side. Was hoping it would pass but it's still persistent. I called ASL pharmacy and the pharmacist said numbness is listed as a side effect but that's all she could tell me. My pcp of course told me to call my prescribing doc but I am the only patient the doc prescribes to so he has no idea. I left a message for Dr Brewers nurse to call me but I'm thinking it is highly unlikely she will call considering I'm not his patient. Anyone help me out here???

I have not experienced facial numbness. It would concern me if I did.
Are you taking Ampho B? If so, I would consider switching to Nystatin, or cutting back on the dose.
(of course that's just layperson's advice)