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Stetson28

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There is an actual protocol in treatment for this. Each step has to be done in order and not before you reach a certain level of healing in each step do you proceed to the next. You can't just get VIP and start using it. Your Lipase levels have to be continually Checked even while on it. I've been working on mold for 3 years now. I had some great advisors and I enjoy science and read a lot. But not until I got a doc trained in this and encouraging me to stick with it - do I feel I'm making headway. I have to look at the small improvements because nothing is coming fast. But I've got a lot going on.....so I will take longer. Diet is really important. There is also a sorting to figure out things as to reactions and why etc. For me, we know I had a tick bite and was very sick when it got found. So that is a complicating issue. I test positive to coinfections. And genetically have the worst ones and inability to throw off mold or toxins. And I have some significant autoimmune issues going on. I would suggest you find a doc trained in this. My doc (and Ryans) after initial consult will do phone conference. So that's an option if you don't have a doc or can't travel. My sister and her son have this too. Even though her doc doesn't have the certification as a CIRS or Lyme doc - she knows what she is doing. So the Docs are out there, you have to search for them. I'm like you, spent lots of money and had a lot of dead ends. But each journey has brought me more answers.
Issie
Thanks Issie,
So along the way did you ever discover any beneficial remedies for particular ailments? I don't disagree that mold is likely a contributor as well as genetics but at this point Lyme and Mold docs are no longer in the budget. Thanks, Thomas.
 

Issie

Well-Known Member
Thanks Issie,
So along the way did you ever discover any beneficial remedies for particular ailments? I don't disagree that mold is likely a contributor as well as genetics but at this point Lyme and Mold docs are no longer in the budget. Thanks, Thomas.
I'm working on it. Having a slow go with so many facets to my picture.
I think the binders make a difference, because as you release them, it helps bind them and eliminate them from your body. I had a time finding one I could tolerate. Finally, she said to try Rice Bran along with either apple pectin or citrus pectin. Apple pectin is inexpensive, but citrus is pricey. I did, however, get both and rotate between them. I also got bentonite clay and take that some of the time. Sasprilla is good to help not only detox, but helps with the herxing. I got a tinture and put it in a tea that helps break down biofilm - called (cistus incanus) along with liquid green whole leaf stevia. Stevia helps with lyme. They are finding all sorts of uses for it.

I really feel I had helped myself before I saw the doctor by using some herbals from Supreme Nutrition. The herbals we are using are in a tinture form, extremely bitter - but needing less of that now. In fact, I'm needing less of a lot of things now. So I must be getting some better.

I am more sensitive now. I will react to more things and faster. I think I was always sensitive, felt bad and didn't connect why. I think since cleansing - I notice what I should have noticed before. That's all good. You have to go as chemical free as possible. With every thing.

I did my own mixture for MARCONS. I need to see if it works before I put it out there. I think it is, but we will test again and see. It's all over the counter.

Make sure you drink clean water. I distill and add Himalayan salt to add the minerals back. My diet is low amylose and low lectin and anti-inflammatory. That means - no root vegetables (except onion and garlic) no bananas. No grains, refined sugar, dairy. And no legumes. I try to eat as organic as possible. I find I don't tolerate nuts well. I can do a little almonds and I use tons of coconut. Everything coconut. It helps kill all sorts of things and helps get rid of yeast. I use coconut milk with full fat. I buy organic Thai Kitchen coconut milk and mix one can of water with it. Use it for everything. Good in coffee.

Some people may not be able to do this next suggestion - I put turmeric, ginger and cinnamon powders and stevia with coconut milk in my coffee. You can add more MCT oil - if you like, for an energy boost. It also allows me to only have this for breakfast and helps with intermittent fasting. The reason this may not work for some is it may create a detox response and be more inflammatory. For some, it helps pain. For others- it creates pain. I think some of the response is it dilates veins and that may not be right for everyone. It's also very warming herbs and could heat up the constitution too much. Some need more cooling herbs. It will help with blood flow and circulation.

It's also important to do parasite cleanses. My doc addresses that first. I had already done many cleanses before I saw her. But she puts people on Alinia. Its normally for giardia. (Interesting that they are finding that in CFS people.) But she says it will get more organisms than that one. I had to back down on recommended amount - too potent. But that one is expensive. She said it was one she felt was really important. I had it compounded and it was cheaper. Not planning to be on it more than 3 months.

I know how it is to not have the funds. And I've had plenty of people come to my aid when I was desperate for advice and ways to do things myself. I still have to space things out and try to be conservative. Hope some of this helps.....it's a lot of trial and error. I've wasted a lot of money over the years. But you never know when you will hit on the right combination and it make a huge difference.

Issie
 

Jo-Jo

Member
Ryan submitted a new resource:

Falsely diagnosed Fibro/CFS for nearly 10 years. - Turned out it wasn't Fibro/CFS. Everyone should rule out CIRS/Mold Illness first.



Read more about this resource...
First thank you so much for the great information. Forgive me if this question has been addressed. Can exposure to mold suddenly become a problem? I had to have mold remediation two years ago. When I got sick 7years ago it came on after a mild flu. Within a few weeks I had to close the business I had spent 10 years building. Because I got sick so fast I haven't considered mold nor Lyme or parasites even though I was working with horses. I had just had my gallbladder out and had lost a lot of weight so I guess I'm wondering if those of us who got sick suddenly were run down and susceptible to a perfect storm of invaders. I would love to just get the neuroquant MRI but the usual issues,money,doctors and brain fog are challenging.
 

Jo-Jo

Member
Issie
May I ask how much Dr. Smith charged? I did my telephone consult with Dr. Ackerley, but am not absolutely sure she is the doctor I want. I will be starting my sabbatical in the Prescott or Payson area, and Scottsdale is closer than Tucson. I really want the neuroquant, but will wait until I get to Arizona, maybe by end of August.

Really sorry to hear all you are dealing with, but now there is hope!
I hope this is okay to post. I'm in Tucson and just learned of dr.Ackerley. Can I ask what the reason was for your hesitation to use her? Getting to Scottsdale would be challenging but I can't waste any more money. Anyone out there in Tucson who want to get a support group going?
 

Stetson28

Member
just my personal opinion I spent a lot of money on a lot of interesting exotic tests most of which told me what I already knew things were broken and working at variable diminished capacities. None of these test however gave me a clear-cut path of treatment or Enlightenment to Better Health. Having over to do again starting at the beginning when I first became sick I would probably look at two particular tests which happened to be the cheapest. The first is on your next blood draw ask to see the color of your blood within the clear drawing tube forget oximeter the color of blood tells the tale for oxygen in the heme. If you have dark burgundy blood like I did you know you probably got bad anaerobes living the High Life in that enviroment. And the 2nd test is a live 2 hour minimum microscopy from a microbiologist or parasitologist not a hemotologist or phlebotomist. You can tell a lot from looking at the size shape surface structure interior Etc of the human cells to rule out many anemias vitamin deficiencies free radical damage and even leaky gut proteins. And after about 2 hours under the slide you'll possibly notice some interesting Critters crawling out of your red blood cells. Spiroketes (maybe lyme) and some of the vector born infections are quite easy to spot and dont even require staining. The trained professional will even be able to identify several species of yeast and even in some cases some fungus and of course the biofilm with its conglomeration of simbiotic, neutral and bad inhabitants. Everybody gets into arguing over the accuracy of antibody tests and PCR DNA testing blah blah blah if you have a relatively High count of parasites and or spirochetes visible in your open blood you are probably less than optimal.
 

Stetson28

Member
I'm working on it. Having a slow go with so many facets to my picture.
I think the binders make a difference, because as you release them, it helps bind them and eliminate them from your body. I had a time finding one I could tolerate. Finally, she said to try Rice Bran along with either apple pectin or citrus pectin. Apple pectin is inexpensive, but citrus is pricey. I did, however, get both and rotate between them. I also got bentonite clay and take that some of the time. Sasprilla is good to help not only detox, but helps with the herxing. I got a tinture and put it in a tea that helps break down biofilm - called (cistus incanus) along with liquid green whole leaf stevia. Stevia helps with lyme. They are finding all sorts of uses for it.

I really feel I had helped myself before I saw the doctor by using some herbals from Supreme Nutrition. The herbals we are using are in a tinture form, extremely bitter - but needing less of that now. In fact, I'm needing less of a lot of things now. So I must be getting some better.

I am more sensitive now. I will react to more things and faster. I think I was always sensitive, felt bad and didn't connect why. I think since cleansing - I notice what I should have noticed before. That's all good. You have to go as chemical free as possible. With every thing.

I did my own mixture for MARCONS. I need to see if it works before I put it out there. I think it is, but we will test again and see. It's all over the counter.

Make sure you drink clean water. I distill and add Himalayan salt to add the minerals back. My diet is low amylose and low lectin and anti-inflammatory. That means - no root vegetables (except onion and garlic) no bananas. No grains, refined sugar, dairy. And no legumes. I try to eat as organic as possible. I find I don't tolerate nuts well. I can do a little almonds and I use tons of coconut. Everything coconut. It helps kill all sorts of things and helps get rid of yeast. I use coconut milk with full fat. I buy organic Thai Kitchen coconut milk and mix one can of water with it. Use it for everything. Good in coffee.

Some people may not be able to do this next suggestion - I put turmeric, ginger and cinnamon powders and stevia with coconut milk in my coffee. You can add more MCT oil - if you like, for an energy boost. It also allows me to only have this for breakfast and helps with intermittent fasting. The reason this may not work for some is it may create a detox response and be more inflammatory. For some, it helps pain. For others- it creates pain. I think some of the response is it dilates veins and that may not be right for everyone. It's also very warming herbs and could heat up the constitution too much. Some need more cooling herbs. It will help with blood flow and circulation.

It's also important to do parasite cleanses. My doc addresses that first. I had already done many cleanses before I saw her. But she puts people on Alinia. Its normally for giardia. (Interesting that they are finding that in CFS people.) But she says it will get more organisms than that one. I had to back down on recommended amount - too potent. But that one is expensive. She said it was one she felt was really important. I had it compounded and it was cheaper. Not planning to be on it more than 3 months.

I know how it is to not have the funds. And I've had plenty of people come to my aid when I was desperate for advice and ways to do things myself. I still have to space things out and try to be conservative. Hope some of this helps.....it's a lot of trial and error. I've wasted a lot of money over the years. But you never know when you will hit on the right combination and it make a huge difference.

Issie
Issie i meant to ask you if you ever got to the vip treatment stage in the mold protocol. You mentioned it being multiple stages and was curious if you ever tried it and received benefit. Ps the rice bran has been a good addition.
 

Issie

Well-Known Member
I hope this is okay to post. I'm in Tucson and just learned of dr.Ackerley. Can I ask what the reason was for your hesitation to use her? Getting to Scottsdale would be challenging but I can't waste any more money. Anyone out there in Tucson who want to get a support group going?
I heard Dr Ackerly wasn't taking new patients. I live in Phoenix. If I lived in Tuscon, I might would try to see a doc down there. But Dr Smith is a certified doc of Shoemaker too. Had a good recommendation of Dr Smith. Was told Dr Smith is cheaper. If she doesn't know --- she will. She tries to get the answers. She continues her education. She is a sweetheart.......
Issie
 
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Issie

Well-Known Member
I'm not to the VIP Point yet. Since my mold/fungus is internal and not from external continued exposure and I have bad genetics and faulty immune system - it seems to be taking me much longer than some. I will also need to be careful when I do try VIP because of my mast cell issues. (It can make it worse.)
I'm glad the rice bran is helping. It is me too. I also rotate either apple or citrus pectin with it.
My latest big help is cistus tea with sasperilla and green leaf stevia in it.
Issie
 
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Lindsey

New Member
Hello, of all the research, blogs, testimonials, etc that I have done over mold in the last year this truly might be the BEST info. packed post I have read! I have a few questions because I can tell you actually know what you are talking about and it's refreshing!

I am working with Dr Shoemaker as well as a local Dr. and he has me taking CSM and Welchol together. I will start in the next few days as I've been out of town and I didn't want any reactions. I am also being tested for MARcoNs next week. I have removed myself from my environment and feel about 80% better in about 3.5 months! I moved into our RV. I did take some stuff from my environment but not much. I was detoxing with saunas, bemers, foods, coffee enemas. My questions are:

1: Do you think you have gotten better without CSM?

2: Were you sensitive before the CSM and did you handle it ok? I keep trying to talk myself out of it and I know it's what is the key to getting better! I have got to take this stuff but I keep researching on to why not to. Which led me to your post and might be the reason I go for it!

3: I see where you mention Insurance? I have positive test for mold and shows a immune issue for sure! Is this something Insurance covers? CSM is affordable but the Welchol is $600!

4: Did you follow a strict diet? I asked Dr Shoemaker about a diet and he said eat everything I want?! I have lost about 45 pounds over this deal and need to gain weight. Up until I moved,I was VERY sensitive to all kinds of food and about everything and now I am able to eat without many triggers.

Sorry so long! Thanks again for your great post! I loved everything about it and it should be the first thing a person reads when they find out they've been exposed! This and Shoemakers website! Take care!
 

grapes

New Member
Hello, of all the research, blogs, testimonials, etc that I have done over mold in the last year this truly might be the BEST info. packed post I have read! I have a few questions because I can tell you actually know what you are talking about and it's refreshing!

I am working with Dr Shoemaker as well as a local Dr. and he has me taking CSM and Welchol together. I will start in the next few days as I've been out of town and I didn't want any reactions. I am also being tested for MARcoNs next week. I have removed myself from my environment and feel about 80% better in about 3.5 months! I moved into our RV. I did take some stuff from my environment but not much. I was detoxing with saunas, bemers, foods, coffee enemas. My questions are:

1: Do you think you have gotten better without CSM?

CSM seems to be needed if we have the HLA gene.

2: Were you sensitive before the CSM and did you handle it ok? I keep trying to talk myself out of it and I know it's what is the key to getting better! I have got to take this stuff but I keep researching on to why not to. Which led me to your post and might be the reason I go for it!

Sensitive before the CSM? Not sure what you mean. Did fine with CSM.

3: I see where you mention Insurance? I have positive test for mold and shows a immune issue for sure! Is this something Insurance covers? CSM is affordable but the Welchol is $600!

I used primarily CSM.

4: Did you follow a strict diet? I asked Dr Shoemaker about a diet and he said eat everything I want?! I have lost about 45 pounds over this deal and need to gain weight. Up until I moved,I was VERY sensitive to all kinds of food and about everything and now I am able to eat without many triggers.

No.

Sorry so long! Thanks again for your great post! I loved everything about it and it should be the first thing a person reads when they find out they've been exposed! This and Shoemakers website! Take care!
 

Lindsey

New Member
I do carry the HLA gene. Dr Shoemaker actually said my genes are quite rare? Not sure why? I should have asked but regardless I do carry the gene.

What I meant by the sensitivities is, I am reactive to lots of meds, supplements, smells and foods because of all this mess. I'm always scared to try anything new because of the sensitivity issues. I think my body is strong enough today to try it! I was just curious if people have bad side effects from CSM or if most tolerate it ok?

Thanks so much for answering my questions so quick!
 

Issie

Well-Known Member
I couldn't take CSM, neither could my sister or her son. We are using Rice Bran with either apple pectin or citrus pectin. My sis and her son are also using Chlorella as a binder. It made me throw up. I've been afraid to try it again.

As for a special diet - most definitely yes. Low amylose and low inflammation diet.

As for being sensitive - another BIG yes. I have MCAS and am super sensitive to lots of things. I have to use a lot less of most everything and start very low and go slow.
Doing Lyme treatments with mold detoxing has been a good thing for me.

I got my results of my yearly ultrasound today. Before, I had 5 tumors, the largest having been biopsied and found to have mold/fungus in it. Today, there were only 3 large enough to measure. The largest one has shrank by .5. So Dr Fry may have been right when he said the glomus fungus he has found can cause tumors and doing mold and fungi detox - may get rid of them. I will be continuing. I'm really encouraged.

I too have the really bad and rare genetics. So it will be harder to detox and we will be more susceptible for future issues. My mold problem is internal and my home is clean.
Issie
 
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Ryan

Active Member
Hello, of all the research, blogs, testimonials, etc that I have done over mold in the last year this truly might be the BEST info. packed post I have read! I have a few questions because I can tell you actually know what you are talking about and it's refreshing!

I am working with Dr Shoemaker as well as a local Dr. and he has me taking CSM and Welchol together. I will start in the next few days as I've been out of town and I didn't want any reactions. I am also being tested for MARcoNs next week. I have removed myself from my environment and feel about 80% better in about 3.5 months! I moved into our RV. I did take some stuff from my environment but not much. I was detoxing with saunas, bemers, foods, coffee enemas. My questions are:

1: Do you think you have gotten better without CSM?

2: Were you sensitive before the CSM and did you handle it ok? I keep trying to talk myself out of it and I know it's what is the key to getting better! I have got to take this stuff but I keep researching on to why not to. Which led me to your post and might be the reason I go for it!

3: I see where you mention Insurance? I have positive test for mold and shows a immune issue for sure! Is this something Insurance covers? CSM is affordable but the Welchol is $600!

4: Did you follow a strict diet? I asked Dr Shoemaker about a diet and he said eat everything I want?! I have lost about 45 pounds over this deal and need to gain weight. Up until I moved,I was VERY sensitive to all kinds of food and about everything and now I am able to eat without many triggers.

Sorry so long! Thanks again for your great post! I loved everything about it and it should be the first thing a person reads when they find out they've been exposed! This and Shoemakers website! Take care!
Lindsay,
Thank you so much for the kind words. I wish I would have had this info earlier as well. It had to come the hard way unfortunately as most Dr.'s don't know about this condition. So many suffer needlessly.
1. One thing I have learned in all this is there are so many opinions. You have to sift through them and find what feels right to you. In my opinion you can do this without CSM, but I highly recommend you try it. I believe, as do most Dr.'s in this field, that CSM is powerful. Only 5% have trouble with it from what I have learned although it's not real pleasant for many.
2. I handled CSM ok for a couple months. I then started to get diarrhea from it which is the opposite reaction. After a couple months of that I stopped for awhile and did Bulletproof's Activated Charcoal. I wasn't sensitive to CSM, just that I would take it on and off because of what it did to my bowels. I would for sure go for it if I was you though.
3. Insurance is finicky on all this. When your Dr. codes what it's for he may need to code it for something else like chronic diarrhea or stomach pain. Insurance covers CSM and Welchol for me, but Welchol was harder for them to cover. One time I did have to pay $600. I also ended up getting the CSM without sugar from Mixtures Pharmacy in AZ. I had to pay out of pocket, but my stomach handled it better. Much more nasty tasting though.
4. Yes, I followed a very strict diet and still do. I'm not sure in context why your Dr. would tell you to eat anything. I'm sure they would want you staying away from sugars, white flour, and other evil foods as I call them. I sure miss having a donut or a candy bar but haven't had a single spec of sugar in a year. I followed the No-Amylose diet until my Shoemaker labs came back normal after about 6 months. Since then I have followed a very healthy diet similar to the paleo diet or the keto diet. In your case with needing to gain weight I would look into Brain Octane from Bulletproof and XCT oil. All those healthy oils will be good for you as well as other healthy fatty foods. I really like Dave Asprey's diet recommendation. Others who think similarly will be a good guide for a healthy diet that fits your needs. Some of it may be trial and error for you. I also did a lot of juicing.
Hope that helps!! God bless!!
 
Hi Issa, Ryan and others,

I know this thread is quite old but wondered if folks would be willing to talk more about their experience with binders.

At the risk of sharing TMI (avert your eyes if talking about GI issues makes you squeamish...): I started Bulletproof activated charcoal about 3.5 weeks ago prescribed by Dr. Vera at Dr. Klimas’ clinic for possible CIRS. I’m prone to loose stools and this has made things even worse, which I’m surprised by since I thought most became constipated with binderss? And strangely, while I was told it could make my stool black in fact my stool turned lighter in color (greenish? sorry, I know, gross). I’m worried it may be speeding up my transit time and worsening malabsorption?

After 2+ weeks I also started getting random episodes of dry heaves, sometimes several times a day and not always obviously linked to the charcoal but likely since that’s my only recent addition.

My question: are these symptoms to push through or is this what you mean by your body rejecting the binder? How do I know I need to back off and start with rice bran or pectin? My follow-up appt isn’t til end of Feb and I have a call in to the doc but thought I’d get info on other people’s experience as well.

Many thanks
 

Issie

Well-Known Member
I dont do well with anything that is chared, meat or charcoal powders. I tried 2 different kinds and it caused naseau for me too. It will absorb nutrients too. I do much better with Rice bran and citrus pectin. But Cholestrymine is preferred binder for mold, if tolerated. (I didn't.) Some use bentonite clay. We had a horrible time finding me binders I could tolerate.
Issie
 
Thank you Issie!

When you say “couldn’t tolerate” is that due to nausea? Vomiting? Did you also have the loose stools Ryan and I had or no? Sorry if that gets too personal, just hoping for any insight.

So you’ve continued the rice bran and pectin for several years, yes? Do those have to be also taken on their own away from other food? Multiple times a day? So many questions, sorry.

Thank you so much.
 

Issie

Well-Known Member
Yes, away from food and at least 2 times a day. I haven't been on them continuously for the whole 2 years. We haven't been successful with getting MARCONS under control with me. That is one of the first things that should be resolved and we can't seem to get it resolved for me. Also because of my having mast cell issues and chronic Lyme - I have more problems with inflammation. So it's on going. My doc says I'm in the very hard to treat category.
As for loose bowels with Charcoal, I dont remember that. But with most detox you do get loose bowels and it burns. That's toxins coming out and a sign it's working. But it shouldn't be so often and so much that it would be considered colitis.
Issie
 

Farmgirl

Well-Known Member
Thank you Issie!

When you say “couldn’t tolerate” is that due to nausea? Vomiting? Did you also have the loose stools Ryan and I had or no? Sorry if that gets too personal, just hoping for any insight.

So you’ve continued the rice bran and pectin for several years, yes? Do those have to be also taken on their own away from other food? Multiple times a day? So many questions, sorry.

Thank you so much.
Hello everyone. I get herx, nausea, vomiting to most everything.

@Issie You are so helpful.
@LittlestEngine We have a nice group here and we can help one another so I don't have a problem with talking about all this.

I have been having GI issues(too loose, too many x a day) since July after being on AB for a year. Lots of vomiting, daily nausea. I must take Zofran just to keep my pills down.

I am going on a cleansing soon, which I do frequently. This includes bentonite clay, a detox mix with charcoal and pectin, IR sauna as much as tolerated, green teas, and organic vegetables juices. Usually these types of things help. It is a lot of work, and it takes a lot out of me. I have MTHFR Double 1298 so I take Glutathione daily. Have you been checked for genetic defects? That can play into the pace at which you detox. I always start smart and work up the amount of treatment slowly.

I don't take rice bran or psyllium, but rather gelatin. Easy on the gut.

Hope you feel as better as you can soon! It is hard to have ME and then add on medication and treatment side effects. Hang in there! You are not alone.
FG
 

Stetson28

Member
Green stool assuming you're not juicing with a lot of chlorophyll is a sign that food is moving too fast through the large intestines the green is actually bile that is not mixed with bilirubin to turn brown to be reabsorbed in the colon. Yellow or pale clay stool assuming you don't have a giardia infection is usually inflamed blocked up liver bile ducts and or gallbladder insufficiency.
The charcoal can really mess with nutrient absorption so timing is everything.
Citrus and apple pectin both work well but for cost-effectiveness I have found psyllium husk and rice bran to be the most effective for daily use. The only difference I have found between rice bran psyllium husk is that psyllium husk bulks and expand congiles like gelatin and rice bran absorbs like sawdust.

If you haven't already I would consider testing your stomach acid levels and pancreatic enzymes.
 
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