Need to delete this. [Deleted]

[Ryan]

This is exactly what has happened to me.

Now granted, I KNEW I still had mold in me plus the HLA gene--testing nine months ago proved it. That mold inhalation happened 4 years ago, and I started having problems 2 1/2 years ago. And I had clear brain inflammation nine months ago as well.

But the long-distance doctor who did the right tests never told me about "CIRS" (I would have researched it if he had), never told me that I needed certain supplements/amounts to aggressively lower the inflammation. And though I got a prescription for Cholestyramine, there was a whole lot I didn't understand about it's use, so my use was spotty. Nine months now of not treating things correctly (though I have been on the Rg3 spray and that helped my brain inflammation) and being on my own with miserable fatigue, low energy levels, bad crashing episodes, mito problems, the need for super high amounts of ubiquinol, brand new methylation problems, low nutrient levels, high RT3 and ordering many different kinds of valuable tests and treating the results on my own--two OATs, Spectracell, hair heavy metal testing...on and on.

Bottom line, I concluded that the mold plus high heavy metals I had to detox twice, caused what I thought was ME/CFS in me. Depressing.

But I was dead wrong all this time. I now know I have CIRS as of yesterday as I'm writing this. I have done my own reading the past 24 hours and am now on several supplements to lower the inflammation, others to get my glutamate up....and already have less fatigue the FIRST day of using the anti-inflammatory supps. I also now better understand how to use the cholestyramine, and started that better administration today.

And I have asked for a consultation with Dr. Shoemaker...

That is great news!! I hope that as more and more people find out that their main issue is something they've never even heard of that more and more people will start to get better. Also hoping Dr.'s will finally learn about this. I am on a two week vacation now and have never felt better. Treating less than 7 months. Keep it up and learn as much as you can. There is a certain science to getting better as you found out. Wishing you the best of luck!!

 

[grapes]

That is great news!! I hope that as more and more people find out that their main issue is something they've never even heard of that more and more people will start to get better. Also hoping Dr.'s will finally learn about this. I am on a two week vacation now and have never felt better. Treating less than 7 months. Keep it up and learn as much as you can. There is a certain science to getting better as you found out. Wishing you the best of luck!!

Hey Ryan, I'm curious--why did you use so many binders? (Cholestyramine, Welchol, Activated Charcoal, and many pectins.) Wouldn't have Cholestyramine been enough? I did start the CSM three times a day over ten days ago and was thinking sticking with it would be enough...

Also I don't think you mentioned having capillary hypoperfusion? Finding that term out was as life-changing for me as finding out I had CIRS.

Oh and why the sauna? Isn't the cholestryamine enough?

 

[Issie]

I'm using D Earth and Takesumi charcoal. I didn't tolerate cholestyramine. So far, so good. She put me on Alina - a pricey medicine - that treats parasites, protozoa and virus. She was in agreement with Dr Fry that I needed to do at least the 6 month regime of Doxycycoline and Diflucan for the mold/fungus similiar to Valley Fever called Funneliformis mosseae. My endocrinology doc also feels I need to do this. I was also given some things to address babesia. It has been an interesting couple of weeks - herxing. So we must be on the right track. Appears most of the things I was already doing is what she would have put me on. My list is above. She said stick with that. The journey continues.........
Issie

 

[Ryan]

Hey Ryan, I'm curious--why did you use so many binders? (Cholestyramine, Welchol, Activated Charcoal, and many pectins.) Wouldn't have Cholestyramine been enough? I did start the CSM three times a day over ten days ago and was thinking sticking with it would be enough...

Also I don't think you mentioned having capillary hypoperfusion? Finding that term out was as life-changing for me as finding out I had CIRS.

Oh and why the sauna? Isn't the cholestryamine enough?

In the beginning few months my body rejected Cholestyramine (CSM). I couldn't handle it. I should have started slower. I then switched to Welchol and had the same problem which was probably a left over problem from CSM. Finally activated charcoal got me going. The CSM and Welchol were working, it's just that I has a side effect only 5% of people get and we found out it's because I went too fast and didn't want to stop because I could feel the CSM working. But yes, CSM should be sufficient. You can also add pectins which is just green apples. I juice them. This is a healthy way to bind toxins as well. I am now doing CSM twice a day and activated charcoal twice a day. In the morning and evening I will have a small glass of juiced green apples (pectins). The sauna just helps speed all this detoxing along. Best of luck to you!!

 

[Lissa]

In the beginning few months my body rejected Cholestyramine (CSM). I couldn't handle it. I should have started slower. I then switched to Welchol and had the same problem which was probably a left over problem from CSM. Finally activated charcoal got me going. The CSM and Welchol were working, it's just that I has a side effect only 5% of people get and we found out it's because I went too fast and didn't want to stop because I could feel the CSM working. But yes, CSM should be sufficient. You can also add pectins which is just green apples. I juice them. This is a healthy way to bind toxins as well. I am now doing CSM twice a day and activated charcoal twice a day. In the morning and evening I will have a small glass of juiced green apples (pectins). The sauna just helps speed all this detoxing along. Best of luck to you!!

Ryan, may I ask what the side effect was? I also launched into the CSM as directed by my Shoemaker trained ND. I stepped it up over a few weeks until I was doing the 4 doses a day, plus the extra EPA and DHA oils. However, I've had a hell of a side effect --- it's like hot flashes I guess. I feel like I'm burning up, my face gets red, I start sweating profusely and then feel kinda claustrophobic(?).

It seems to directly coincide to taking the CSM -- about a half hour afterwards. And then it happens more times during the day too. And some nights I get awful night sweats. I do sense the CSM is working overall. My instincts tell me the reaction is a detox, but it feels like it's too much for me. I've reduced the dose to twice a day -- and sometimes less. I've also tried taking a slightly smaller dose.

I'm wondering if I need to switch to something else... one of my NDs is looking into it for suggestions. I'd be grateful if anyone here has experience like this and recommendations to offer. (My Shoemaker doc took note, but didn't seem to have anyone else experiencing that.... (???)

 

[Lissa]

This is exactly what has happened to me.

Now granted, I KNEW I still had mold in me plus the HLA gene--testing nine months ago proved it. That mold inhalation happened 4 years ago, and I started having problems 2 1/2 years ago. And I had clear brain inflammation nine months ago as well.

But the long-distance doctor who did the right tests never told me about "CIRS" (I would have researched it if he had), never told me that I needed certain supplements/amounts to aggressively lower the inflammation. And though I got a prescription for Cholestyramine, there was a whole lot I didn't understand about it's use, so my use was spotty. Nine months now of not treating things correctly (though I have been on the Rg3 spray and that helped my brain inflammation) and being on my own with miserable fatigue, low energy levels, bad crashing episodes, mito problems, the need for super high amounts of ubiquinol, brand new methylation problems, low nutrient levels, high RT3 and ordering many different kinds of valuable tests and treating the results on my own--two OATs, Spectracell, hair heavy metal testing...on and on.

Bottom line, I concluded that the mold plus high heavy metals I had to detox twice, caused what I thought was ME/CFS in me. Depressing.

But I was dead wrong all this time. I now know I have CIRS as of yesterday as I'm writing this. I have done my own reading the past 24 hours and am now on several supplements to lower the inflammation, others to get my glutamate up....and already have less fatigue the FIRST day of using the anti-inflammatory supps. I also now better understand how to use the cholestyramine, and started that better administration today.

And I have asked for a consultation with Dr. Shoemaker...

Please let us know how things go @grapes! I'm on the same path and interested in other people's stories...

 

[Ryan]

Ryan, may I ask what the side effect was? I also launched into the CSM as directed by my Shoemaker trained ND. I stepped it up over a few weeks until I was doing the 4 doses a day, plus the extra EPA and DHA oils. However, I've had a hell of a side effect --- it's like hot flashes I guess. I feel like I'm burning up, my face gets red, I start sweating profusely and then feel kinda claustrophobic(?).

It seems to directly coincide to taking the CSM -- about a half hour afterwards. And then it happens more times during the day too. And some nights I get awful night sweats. I do sense the CSM is working overall. My instincts tell me the reaction is a detox, but it feels like it's too much for me. I've reduced the dose to twice a day -- and sometimes less. I've also tried taking a slightly smaller dose.

I'm wondering if I need to switch to something else... one of my NDs is looking into it for suggestions. I'd be grateful if anyone here has experience like this and recommendations to offer. (My Shoemaker doc took note, but didn't seem to have anyone else experiencing that.... (???)

Mine was diarrhea which is opposite of what's supposed to happen. Yours sounds related to CSM as well. You could try Welchol although it's about 1/5 as powerful as CSM. I've heard good sources say the next best is activated charcoal. I use Bulletproof charcoal from Dave Asprey's site. Lots of people have to ramp up slowly with CSM. You could try activated charcoal for awhile and then give CSM a try again later at a smaller dose and see if it comes back.

 

[Issie]

My doc has me starting with only 1/4 tea spread out through the day. I've been on charcoal for 3 weeks now. It wasn't enough - but she upped it to 4 times a day rather than 2 times. I'm having the sweats, naseau, blurred vision, generally unwell feeling, no energy and this is before cholestryamine. I think it's from the herbs and Doxy with Diflucan. I'm also on Alinia. My herx started with the addition of Doxy and Diflucan. But I'm trying to treat not only CIRS but internal mold that was found in my biopsy. She is not sure if that is registering the positive CIRS or if I'm still exposed. Mine will be a bit of an experiment as we have two pathways to work on. I was exposed to mold through my parents house for almost a year while doing parent care. But I've been working on that exposure (on my own) for 3 years now. Finally have the labs and testing to confirm the illness. But still having issues.

I had 5 genetic markers of the HLA type and 2 were the dreaded ones of not only mold but biotoxins.

This will be a journey........I'm so thankful to have found this post and Ryan to have now found Dr Smith. I'm getting answers I didn't have.

I officially have the Brain Inflamed DX. 3 areas of my brain are swollen and pressing down on 2 other areas and compressing them. No wonder I have brain fog issues. I have a lot of inflammation. I often said my worst symptom is pain. So hoping this helps.

Issie

 

[HMBCheryl]

My doc has me starting with only 1/4 tea spread out through the day. I've been on charcoal for 3 weeks now. It wasn't enough - but she upped it to 4 times a day rather than 2 times. I'm having the sweats, naseau, blurred vision, generally unwell feeling, no energy and this is before cholestryamine. I think it's from the herbs and Doxy with Diflucan. I'm also on Alinia. My herx started with the addition of Doxy and Diflucan. But I'm trying to treat not only CIRS but internal mold that was found in my biopsy. She is not sure if that is registering the positive CIRS or if I'm still exposed. Mine will be a bit of an experiment as we have two pathways to work on. I was exposed to mold through my parents house for almost a year while doing parent care. But I've been working on that exposure (on my own) for 3 years now. Finally have the labs and testing to confirm the illness. But still having issues.

I had 5 genetic markers of the HLA type and 2 were the dreaded ones of not only mold but biotoxins.

This will be a journey........I'm so thankful to have found this post and Ryan to have now found Dr Smith. I'm getting answers I didn't have.

I officially have the Brain Inflamed DX. 3 areas of my brain are swollen and pressing down on 2 other areas and compressing them. No wonder I have brain fog issues. I have a lot of inflammation. I often said my worst symptom is pain. So hoping this helps.

Issie

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!

 

[Issie]

@HMBCheryl ,
She will do an initial consult for you to decide if you want her for $50. That will be applied to the first visit and work up with physical that cost $450. (Subject to change - prices in early 2017.) She spends hours with you getting history and did a very through physical (minus EKG) which included neurological testing. She is a sweetheart and very sincere in trying to help her patients. I felt an instant like for her and was completely comfortable with her. I didn't feel judged or questioned at all (unlike some other doctors). She has had a whole lot of exposure to different techniques and thought processes. She has trained and is now certified with Shoemaker. And also has trained under Klinghardt. She is very open minded and willing to dig and learn with you. If she doesn't know, she calls people that do to get answers.
She doesn't take insurance, but if you become a patient she will give you a coded bill to submit to insurance. If you go - tell her I told you about her. She is excited to have referrals. That being said - she is getting busy and people are flying from all over the country to see her. I like her. You feel her warmth and concern.

Issie

 

[Merida]

Wow. I just started with a naturopath ( grad of Bastyr ) several months ago. I was grateful that he ordered standard blood tests that revealed Lyme ( yes, know tick bite 2010) and other co-infections. From standard labs. But, When consulting with my board-certified infectious disease doc, he said the immune studies indicated past, not current, infection.

So, I got swamped with expensive chemical concoctions that I knew my body could not handle. I do not understand WHY we are supposed to get worse before we get better. I have experienced diverticulitis, urinary tract/ kidney infections, severe yeast that ulcerated the "nether regions."
But, when on the correct antibiotics/ antifungal agents I started to get better, not worse. So, I am not on board with this supposed phenomenon of Herxing and getting worse?????

Who has gone through all this Herxing business and gotten better?

 

[Issie]

@Merida, from what I understand about the process.....if our immune systems were working properly we may not have gotten the issues in the first place. Since they are not, our body accepts what it shouldn't have accepted and we recirculate the things that our bodies should have eliminated. When they have been stored in organs, muscles, blood and accepted as a part of us when the levels get to a toxic level we stay sick. When we start detoxing, not only do we have to make sure we are binding and eliminating them, we have to get them to move out of the stored areas. Some of these things form and live in biofilms. It's like a shield to avoid detection. When we break this down and get into what it houses and the immune system starts to detect them we may go through a detox or herx response. If we can take it slower and not "dump" too much to overwhelm the body - the response won't be as severe.
I came back positive for MARCONS and was resistant or ineffective to 7 antibiotics. One of which was Doxycycoline. No wonder it was doing nothing for me.
My doc is now thinking with my inability to take cholosterymine and getting worse with my mold treatments (from what I read - usually mold detox doesn't cause a severe herx) I probably am still having issues with Lyme and Babsesia and another confection that I was positive for. We have backed up and now treating that more than the mold. Still using binders (Takesumi charcoal, d earth, citrus pectin and zeobind (for heavy metals). I was taken off Alinia and had to lower my BEG spray down some. Starting to feel some better in last few days.

Issie

 

[Merida]

@Issie
Thank you for explaining the theory in Herxing/ detoxing. Yes, I appreciate biofilms and L - forms. And I read at Garth Nicolson's site - where he has found that most CFS people commonly have multiple chronic infections.

I also read that the immunoglobulins to various organisms may remain high for years after the immune system has vanquished the particular organisms. So, the definitive technique would to be to culture the organism from some tissue. Not always easy - I did that for years in clinical diagnostic lab.

I so appreciate you sharing your info, progress, and experience. I am just very confused at this point and don't know what to believe. I do remember that 7 years ago I took 2 weeksLevaquin (brand) for diverticulitis and my fatigue lifted!!!!! But, it gradually returned to its old level after 5 or 6 weeks.

Please keep sharing!

 

[Remy]

I think the occurrence of herxing is actually pretty rare and what most people experience is a worsening of their inflammatory symptoms courtesy of the new drug/herb/supplement. I don't think herxing is required in order to improve. I actually think herxing is a warning sign of increasing inflammation.

 

[Issie]

@Remy , well I have way more of my share of inflammation. So many markers off on that account.

Issie

 

[Farmgirl]

@Ryan, sorry to hear your diagnosis lost its way on the wrong road. That can be frustrating when you include the time lost that you could have gotten the correct help and the money/time spent down the wrong road. I, myself, had a lot of other diseases which could easily be found on lab tests, etc, though the doctors often could not explain why the problems we're so "weird"(like a low TSH and low T4 at the same time). So, those other multiple diseases created a "fog" on my road, to diagnosis, too. Plus, it must be so difficult for a doctor to "see" what we are feeling and what is the base cause. That is why searching for these biomarkers is SO important in ME/CFS. So, now that you have found your road, I hope the trip is a better one for you! Thanks for sharing!

 

[Farmgirl]

@Issie, can I ask what you & others do for detox? I have found juicing helps me a ton, but let's just saying the juice and I are not the best of friends. I also, at 55, feel I am going down hill faster than ever before, after having had this disease a large portion of my life. Anyways, i am MTHFR C1298C and detox is important. We are thinking about a home sauna. Are there older posts on this? I am also planning on trying fasting and charcoal/bentonite clay. Anybody got a helpful idea or two??

 

[Ryan]

@Ryan, sorry to hear your diagnosis lost its way on the wrong road. That can be frustrating when you include the time lost that you could have gotten the correct help and the money/time spent down the wrong road. I, myself, had a lot of other diseases which could easily be found on lab tests, etc, though the doctors often could not explain why the problems we're so "weird"(like a low TSH and low T4 at the same time). So, those other multiple diseases created a "fog" on my road, to diagnosis, too. Plus, it must be so difficult for a doctor to "see" what we are feeling and what is the base cause. That is why searching for these biomarkers is SO important in ME/CFS. So, now that you have found your road, I hope the trip is a better one for you! Thanks for sharing!

Thank you Farmgirl. I also had low TSH and T4 as well as other co-infections that showed up in the beginning. With you being MTHFR you will need to fight a little harder, but it's possible to improve. I've seen some videos of Dr. Hyman, some Shoemaker Dr.'s, and Dr. Mercola talking about MTHFR. The more you learn about it the more tools you will have to fight with. Wishing you the best of luck. One other thing you may consider for detoxing is CSM. Being MTHFR you may have to start very slow. P.S. A sauna was great for me. If you get one just make sure you learn how to replace nutrients properly.

 

[Merida]

Who else in this conversation has been diagnosed with, or suspected of having Lyme with/ without co- infections? I see that mold sensitivity can also be part of the Lyme continuim. I mentioned at another discussion - thinking everyone should look at the NorVect conference - especially Dr. Burrascano and Dr. Horowitz.
Horowitz (on a different lecture) recommends down regulating inflammation with : green tea extract, cucutmin, reservatrol, broccoli seed extract.
I am now looking at the Buhner herbal protocols. People seem to really respect this person.

Is this old news for everyone? I am still in shock here - to think I may actually have tick-related infections that may be responsible for newer symptoms: erratic blood pressure, severe sweating/ heating up episodes, swollen painful knee, diastolic heart dysfunction, left kidney disease, large urine output. I could have mold sensitivity, but live in a very dry area.

Anyone relate to this????

 

[Ryan]

Who else in this conversation has been diagnosed with, or suspected of having Lyme with/ without co- infections? I see that mold sensitivity can also be part of the Lyme continuim. I mentioned at another discussion - thinking everyone should look at the NorVect conference - especially Dr. Burrascano and Dr. Horowitz.
Horowitz (on a different lecture) recommends down regulating inflammation with : green tea extract, cucutmin, reservatrol, broccoli seed extract.
I am now looking at the Buhner herbal protocols. People seem to really respect this person.

Is this old news for everyone? I am still in shock here - to think I may actually have tick-related infections that may be responsible for newer symptoms: erratic blood pressure, severe sweating/ heating up episodes, swollen painful knee, diastolic heart dysfunction, left kidney disease, large urine output. I could have mold sensitivity, but live in a very dry area.

Anyone relate to this????

Yes, what you say is common. Many with lyme have CIRS, etc. There is not really any lyme test that is 100%. My Igenex test was $970 and came back as a question mark. Some say I have lyme and some say I don't. According to Dr. Shoemaker's work in most cases you treat CIRS first if you suspect you've had lyme for years. Lyme is treated first if you know it's fresh. Either way I think you may like this article: https://www.survivingmold.com/community/as-i-see-it-lyme-disease-and-cirs