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Mold
Sept 19, 2017 14:04:28 GMT
Post by Little Bear (LB) on Sept 19, 2017 14:04:28 GMT
Hi everyone!-
I just received my test results. I have one of the mold sensitivity patterns.
I have tried to read about Shoemaker's mold, but I'm unable to retain any of the information.
My doctor said that my Melanocyte Stimulating Hormone (MSH) is too low and my Trans. Growth Factor beta 1 (TGF-beta 1) is too high. My doctor said that these are symptoms of a damaged immune system. And explains why I am not getting better.
I started Cholestyramine today. I have to take this med. 4 times a day.
I have to get a MARCONs test in a couple of weeks. I giggled the first time that I saw the word MARCON, I pronounced it like the cookie Macaroon! LOL! If I understand correctly, the doctor will just swab my nose for this test.
I tested my house for mold. I just got the results for this also. From what I can see from the results, is that our house has very small trace amount of common nontoxic molds. So at least we don't have to bulldoze our house! LOL!
I really have to try hard and read about this mold thing going on in my body. It's just so hard for my to learn new things. I have to constantly reread things in hope that pieces of the information will start to stay in my brain.
my doctor is fairly new to learning about Shoemaker's mold protocol. I asked him if I might herx while taking the Cholestyramine. He said that he hasn't had a patient that herxed from this medication. Well, I guess that we will see how I do with this med. I usually don't do well with any meds.
I really hope that this mold thing is the missing piece to my puzzle! I am so sick and tired of being a human guinea pig!
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Post by nosila on Sept 19, 2017 15:35:29 GMT
Wow, best of luck to you! That's great news about your house. I've always had this fear that I would have problems with mold and try to find a place to live.
I know mold has been a big piece of the puzzle for some people. I hope it helps you find some relief!
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Mold
Sept 19, 2017 15:45:54 GMT
DJ likes this
Post by Admin/ Traveler on Sept 19, 2017 15:45:54 GMT
LB, have you ever been in contact with "Mr Mike" from healingwell? He deals with mold issues - MARCONS and other types. I know that he wouldn't mind an email from you - he is such a very kind and generous man!
I know some believe they have herxed on Cholestyramine, but not many do usually. Just go slow and watch for a herx, and slow down if you have to!
I used to worry about it as well. I live in a more southern state and there's always enough humidity, so there's mold everywhere! But, the only time I have had an issue with any symptoms when around mold has been when I've been in areas with large amounts of mold and I"m the one cleaning it. I figure I should expect some issues under those circumstance (and I've quit doing that!!!!). I'm one of the lucky ones for sure!
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Mold
Sept 20, 2017 2:08:18 GMT
Post by Little Bear (LB) on Sept 20, 2017 2:08:18 GMT
LB, have you ever been in contact with "Mr Mike" from healingwell? He deals with mold issues - MARCONS and other types. I know that he wouldn't mind an email from you - he is such a very kind and generous man! I know some believe they have herxed on Cholestyramine, but not many do usually. Just go slow and watch for a herx, and slow down if you have to! I used to worry about it as well. I live in a more southern state and there's always enough humidity, so there's mold everywhere! But, the only time I have had an issue with any symptoms when around mold has been when I've been in areas with large amounts of mold and I"m the one cleaning it. I figure I should expect some issues under those circumstance (and I've quit doing that!!!!). I'm one of the lucky ones for sure! Hi Traveler!-
Thank you for recommending Mr Mike! I would email him, but I guess I don't have any questions right now. And a lot of information that I receive can be very confusing and overwhelming for me at times. This whole mold lingo is like a foreign language, that my brain can't handle right now. I would feel bad , like I was wasting his time. I know that he would take the time to email me, and help answer any questions that I had. He was always very helpful on the healing well lyme board. I hope that he is doing well.
Thanks for the heads up on herxing! So far , so good for me!
Have you ever treated yourself for mold using herbs? Or heard of other people using herbs to treat their mold issues?
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Mold
Sept 20, 2017 18:09:26 GMT
Post by Admin/ Traveler on Sept 20, 2017 18:09:26 GMT
No, I have not ever treated for mold. As I said, the only time I have issues with mold sensitivities, is when I'm the one cleaning up a moldy area (only did it once though!!) - so I just avoid that now! LOL! As long as I never allow things to get out of hand, I don't have issues. It happened while I was bed ridden - I wasn't exactly trying to keep up on the "hidden" cleaning, like in cabinets. I do know that Buhner has a mold protocol though, you can find it here: Buhner mold protocol
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Mold
Oct 10, 2017 12:24:08 GMT
Post by DJ on Oct 10, 2017 12:24:08 GMT
Hi everyone!-
I just received my test results. I have one of the mold sensitivity patterns.
I have tried to read about Shoemaker's mold, but I'm unable to retain any of the information.
My doctor said that my Melanocyte Stimulating Hormone (MSH) is too low and my Trans. Growth Factor beta 1 (TGF-beta 1) is too high. My doctor said that these are symptoms of a damaged immune system. And explains why I am not getting better.
I started Cholestyramine today. I have to take this med. 4 times a day.
I have to get a MARCONs test in a couple of weeks. I giggled the first time that I saw the word MARCON, I pronounced it like the cookie Macaroon! LOL! If I understand correctly, the doctor will just swab my nose for this test.
I tested my house for mold. I just got the results for this also. From what I can see from the results, is that our house has very small trace amount of common nontoxic molds. So at least we don't have to bulldoze our house! LOL!
I really have to try hard and read about this mold thing going on in my body. It's just so hard for my to learn new things. I have to constantly reread things in hope that pieces of the information will start to stay in my brain.
my doctor is fairly new to learning about Shoemaker's mold protocol. I asked him if I might herx while taking the Cholestyramine. He said that he hasn't had a patient that herxed from this medication. Well, I guess that we will see how I do with this med. I usually don't do well with any meds.
I really hope that this mold thing is the missing piece to my puzzle! I am so sick and tired of being a human guinea pig!
I hope things work out for u with this mold situation! I am like u I have to read things so many times to understand it and get very frustrated over it. I know I drive my hubby nuts getting him to help me understand things that I read! I have problems sometimes when some one is explaining things to me also! It's so frustrating! I know I frustrate a certain friend I get to help me sometimes, but she understands. I send her things to read n explain to me sometimes!
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Mold
Oct 17, 2017 22:55:45 GMT
Post by Little Bear (LB) on Oct 17, 2017 22:55:45 GMT
Hi DJ!-
Thank you for your response. You are always so nice to me. Thank you!
-------------------------------------------------------------------------------------------------------------------------------
Once again I had hope for a worthless medication. The problem with the Cholestyramine that I am taking is that it isn't "pure". I found out the hard way that it is full of additives and sugar.
Everyone wonders why I am so angry all the time. Dealing with stupid doctors that claim that they can "cure" me, spending a lot of money on worthless medications, and feeling like shit daily is enough to make anyone freaking crazy!!!
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Mold
Oct 19, 2017 20:48:14 GMT
Post by Admin/ Traveler on Oct 19, 2017 20:48:14 GMT
I wouldn't have ever learned anything if I hadn't started taking notes on what I was reading! LOL! I'm doing lots better now, but I still take a lot of notes, and use a ton of bookmarks!
See about contacting a compounding pharmacy that is willing to do pure Cholestyramine for you. I'm pretty sure that's how others have gotten it.
I know what you mean about the doctors!!! Most of the doctors cringe when they see me walk into the room - and these are hubby's docs!!!! I don't have one any more! LOL! A little self education by the patient really throws them into a panic!
Let me know if I can be of any help, LB - I'll be happy to help in many different ways that we can discuss if you choose.
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Mold
Oct 20, 2017 2:28:31 GMT
Post by Little Bear (LB) on Oct 20, 2017 2:28:31 GMT
Hi Traveler!-
Thank you for your response!
The doctor that tested me for mold sensitivity recommended that I get the Cholestyrime through a compound pharmacy. When I spoke to the pharmacist on the phone, I was told that 1 month of the medication would cost me $425. That is too much money to spend on something that I don't even know if it will work for me or not. My spare bedroom already looks like a pharmacy from All the different meds, supplements, and herbs that I have tried through the years. So, I called the doctor and he told me to look at goodrx.com. He said that I would be able to purchase a canister for $40!!! He told me that the canister would last me through the whole month.
The thing that nobody knew was that in every 9 gram scoopful, I was only getting 4 grams of the Cholestyramine that I needed. Who knows what is in the other 5 grams in each scoopful. I tried looking up the ingredients online. It looks like worthless sugar and fillers. The canister only lasted me about 10 days. I even showed it to the pharmacist from where I purchased it. She was in shock, because they usually only look at the total weight of the medication to figure out how many days it will last.
I had an appointment with my LLMD recently. She said that she knew of a compound pharmacy that will hopefully be cheaper than the $425. I am waiting to hear back from her.
You are always a big help to me! Thank You!
I hope that you are doing well with your treatment and your herbal schooling!
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Post by Admin/ Traveler on Oct 20, 2017 16:44:19 GMT
WOW!!!! That's expensive stuff!!! There's no way I could ever afford to use it! I'm just stunned at the prices of things lately!! I do hope that GoodRX or your LLMD will be a real help in getting this for you! Aw! Thank you, LB!! I don't see it, but I'm very grateful that you feel I have been of help to you too. Treatments are interesting (LOL - aren't they always???) and school is slow due to life stuff, but I'm still making progress! I'm nearing the half way point in my Intermediate courses!!!! YAY!!!
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Post by MisterMike on Nov 6, 2017 1:38:17 GMT
LB - if I can ever be helpful please let me know. Contrary to what Trav graciously said, I'm certainly no expert, but I have learned some tidbits through this journey which I'm more than happy to share.
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Mold
Nov 6, 2017 16:55:03 GMT
Post by Admin/ Traveler on Nov 6, 2017 16:55:03 GMT
Mr. Mike!!! Thank you so much for joining and reaching out to LB!!! You know, we could always use your knowledge and understanding of these things!!! And, yes - I just said that again!!!! You're a good egg, charlie Brown!
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Post by Little Bear (LB) on Nov 7, 2017 3:14:48 GMT
LB - if I can ever be helpful please let me know. Contrary to what Trav graciously said, I'm certainly no expert, but I have learned some tidbits through this journey which I'm more than happy to share. Hi Mister Mike!-
Thank you so much for your very kind response! How have you been doing lately? I hope that you are doing ok?
How long did you treat yourself for mold? Did you notice any improvements using Cholestyramine or the nasal spray?
I saw my doctor for a nasal swab in the beginning of October. They said that they would contact me as soon as they got the results back. I'm still waiting to hear from my doctor. Either they forgot about me, or maybe it takes awhile to culture the nasal swab?
Thank you again for taking the time to help me! It is very much appreciated!
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Post by MisterMike on Nov 8, 2017 23:46:39 GMT
Hi Little Bear! I have taken Cholestyramine off and on for a number of years, but honestly have never been ever to take it regularly (between working a 40+ hour job and taking a gazillion other things throughout the day) plus my doc has wanted to focus on more "pertinent" infections for me. That being said, I do feel Cholestyramine is an extremely important part of clearing mold issues and encourage you to do it as often as directed. Is it having any effect so far? Regarding the BEG Nasal Spray I've actually have had excellent success with it and as of July I am MARCoNS free! (trumpets, fanfare!) I'd squeak to your doc for lab results as it shouldn't take that long. If Shoemaker makes your head spin (which he does to everyone) I'd suggest looking into Dr Neil Nathan's work: www.neilnathanmd.com/Hope this helps a little! MM
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Mold
Nov 9, 2017 1:13:17 GMT
Post by Admin/ Traveler on Nov 9, 2017 1:13:17 GMT
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Post by Little Bear (LB) on Nov 9, 2017 17:31:45 GMT
Hi Little Bear! I have taken Cholestyramine off and on for a number of years, but honestly have never been ever to take it regularly (between working a 40+ hour job and taking a gazillion other things throughout the day) plus my doc has wanted to focus on more "pertinent" infections for me. That being said, I do feel Cholestyramine is an extremely important part of clearing mold issues and encourage you to do it as often as directed. Is it having any effect so far? Regarding the BEG Nasal Spray I've actually have had excellent success with it and as of July I am MARCoNS free! (trumpets, fanfare!) I'd squeak to your doc for lab results as it shouldn't take that long. If Shoemaker makes your head spin (which he does to everyone) I'd suggest looking into Dr Neil Nathan's work: www.neilnathanmd.com/Hope this helps a little! MM Hi Mister Mike!-
First of all........ CONGRATULATIONS!!!!! What wonderful news to hear that you had great success with using the BEG Nasal Spray!! It is always hopeful to hear about things that have helped others! Thank you so much for sharing!
Thank you so very much for taking the time to answer my questions! I truly do understand that you are very busy with work and continued healing. I hope that you continue to make progress every day!
I think that I was having some improvements using the Cholestyramine. For example: I had a couple of days that my fatigue was somewhat better. I didn't have enough energy to run a marathon, but I was able to do some things around the house and not struggle so bad. I also had some days that I didn't make any spelling mistakes in my daily journal. I noticed this while taking the cheap Cholestyramine powder. I wonder if I got the "pure" powder, if it would help me more. Is there even such a thing as pure Cholestyramine, Or does the compound pharmacy add things to the powder also. I have to ask my doctor about this.
I wonder if the Cholestyramine was binding to mold toxins or if it was binding to Lyme and cos. This is the first binder that I have noticed helping me somewhat. I have tried charcoal, and Byron White Detox 2 as binders in the past. I didn't notice any relief from either of them.
I will try calling my doctor today about my results from my nasal swab.
Thank you for mentioning Dr Neil Nathan! I will see if he has anything on youtube. Sometimes watching a video is easier for me than trying to read.
Thank You!
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Post by MisterMike on Nov 10, 2017 18:16:14 GMT
Hey LB! You're very welcome. Glad I can help in a small way.
Cholestyramine does come in a pure form and many have had good success with it, BUT in my opinion it is not necessary to have good results (i.e. any cholestyramine is better than none) and the pure stuff is extremely cost prohibitive. The last canister of Cholestyramine (which is sugar free just not "pure") I got only cost $10. Ask for Cholestyramine Light.
My understanding is it is just a mycotoxin binder and not Lyme and co infections, but I could be wrong.
Also try to sweat as much as you can. If you have access to a sauna that can be invaluable to try to move those toxins out. Detox baths are great too.
Good luck with the results of your nasal swab!
MM
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Mold
Nov 11, 2017 1:56:29 GMT
Post by Little Bear (LB) on Nov 11, 2017 1:56:29 GMT
Hey LB! You're very welcome. Glad I can help in a small way. Cholestyramine does come in a pure form and many have had good success with it, BUT in my opinion it is not necessary to have good results (i.e. any cholestyramine is better than none) and the pure stuff is extremely cost prohibitive. The last canister of Cholestyramine (which is sugar free just not "pure") I got only cost $10. Ask for Cholestyramine Light. My understanding is it is just a mycotoxin binder and not Lyme and co infections, but I could be wrong. Also try to sweat as much as you can. If you have access to a sauna that can be invaluable to try to move those toxins out. Detox baths are great too. Good luck with the results of your nasal swab! MM Hi Mister Mike!-
Thank you so much for your response!
Oh, I am sooooo glad to see that you also used the Choestyramine in the canister! This helps ease my mind. I was starting to wonder if I messed up by not getting the "pure" stuff. I personally couldn't afford $425 for 1 month supply of a medication to "try". My spare bedroom already looks like a pharmacy from all the meds, herbs, supplements that I have tried over the years.
I wrote down about asking for the Cholestyramine Light incase I ever need to use that med again. Thank you for clarifying that it's a mycotoxin binder.
I got a sauna a couple of years ago. I try to use it daily for detoxing. I have noticed at times that my sweat smells like ammonia, mold, metal, fungus. I always wonder if I am breathing back in the toxins since I can smell them. I wish that I could be hooked up to oxygen while I was in the sauna to make sure that I was breathing clean air. Sometimes the stench would linger on me even after taking a shower! Sorry, TMI!!! LOL!
Thank you for suggesting calling my doctor for the nasal test results! The doctor said that I need the BEG Nasal Spray. The compound pharmacy told me that it would cost $80 for 1 month. I hope that this will get me one step closer to healing.
Thank you for taking the time to share with me your experience and knowledge!
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Post by MisterMike on Nov 12, 2017 23:27:34 GMT
Awesome! Glad things are moving along positively. Good luck with the BEG spray treatment. I had the best success with it compared to everything else I tried for MARCoNS and ridding yourself of MARCoNS is an essential early step to clearing your mold issues. Here's a little more info about what they can do (from this excellent site: biotoxinjourney.com/marcons/)"MARCoNS will further lower MSH (MARCoNS make hemolysins that cleave MSH rendering it useless), increase cytokines, and lower T-reg cells resulting in Chronic Fatigue symptoms of body aches and debilitating exhaustion. As MSH is further lowered by MARCoNS, fatigue and chronic pain due to reduced endorphins and increased cytokines will ensue. In addition, hormone imbalances, mood swings, leaky gut, alternating constipation and diarrhea, lower melatonin (poor sleep), and low ADH (Antidiuretic Hormone) are all the result of too low MSH. When MSH falls too low, the body initially raises ACTH (Adrenocorticotropic Hormone) and Cortisol in response to the increased stress thereby keeping the person functional – although the candle is burning at both ends. However, over time the body loses the ability to compensate resulting in ACTH and Cortisol values that fall below normal level – adrenal fatigue sets in. Related to ADH, an imbalance between lowered ADH and plasma Osmolality (a measure of body hydration) results in the person being unable to hold water (frequent urination) and may lead to frequent static shocks due to the higher than normal salt levels on the skin – along with lower back pain, fungal overgrowth, depression, allergies, obesity, and other symptoms associated with chronic dehydration. Incidentally, C4a and TGF-beta1 are typically quite high in people with Biotoxin Illness, also called Chronic Inflammatory Response Syndrome (CIRS). In some, MARCoNS can suppress these two CIRS markers." Best of luck and please don't hesitate to reach out either here or through my email if you have any other questions. MM
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Mold
Nov 13, 2017 8:30:03 GMT
Post by Little Bear (LB) on Nov 13, 2017 8:30:03 GMT
Awesome! Glad things are moving along positively. Good luck with the BEG spray treatment. I had the best success with it compared to everything else I tried for MARCoNS and ridding yourself of MARCoNS is an essential early step to clearing your mold issues. Here's a little more info about what they can do (from this excellent site: biotoxinjourney.com/marcons/)"MARCoNS will further lower MSH (MARCoNS make hemolysins that cleave MSH rendering it useless), increase cytokines, and lower T-reg cells resulting in Chronic Fatigue symptoms of body aches and debilitating exhaustion. As MSH is further lowered by MARCoNS, fatigue and chronic pain due to reduced endorphins and increased cytokines will ensue. In addition, hormone imbalances, mood swings, leaky gut, alternating constipation and diarrhea, lower melatonin (poor sleep), and low ADH (Antidiuretic Hormone) are all the result of too low MSH. When MSH falls too low, the body initially raises ACTH (Adrenocorticotropic Hormone) and Cortisol in response to the increased stress thereby keeping the person functional – although the candle is burning at both ends. However, over time the body loses the ability to compensate resulting in ACTH and Cortisol values that fall below normal level – adrenal fatigue sets in. Related to ADH, an imbalance between lowered ADH and plasma Osmolality (a measure of body hydration) results in the person being unable to hold water (frequent urination) and may lead to frequent static shocks due to the higher than normal salt levels on the skin – along with lower back pain, fungal overgrowth, depression, allergies, obesity, and other symptoms associated with chronic dehydration. Incidentally, C4a and TGF-beta1 are typically quite high in people with Biotoxin Illness, also called Chronic Inflammatory Response Syndrome (CIRS). In some, MARCoNS can suppress these two CIRS markers." Best of luck and please don't hesitate to reach out either here or through my email if you have any other questions. MM Hi Mister Mike!-
I looked up the website that you mentioned above. Wow! lots of information. Thank you for quoting some of the more important information about MARCoNS and low MSH (which I have both). Personally for me this actually makes sense. I can check "YES" to almost all of the symptoms listed above.
I got diagnosed with overgrowth of Candida and leaky gut before I knew that I had Lyme. I tried Nystatin tablets and Diflucan but neither of the meds helped me. Maybe because I didn't know that I was also dealing with mold.
My doctor never tested me for C4a. He only tested the TGF-beta1. My TGF-beta1 was too high. Do you think that it is necessary for both to be tested?
Since my TGF-beta 1 is high, this means that I have CIRS. Correct?
-Quote from website above: " Before beginning BEG spray, it's important to have baseline testing of VCS and MMP9. This is important in the event that BEG spray causes a detox reaction. This happens more often for those with a Methicillin Resistant variant and usually within the first week. Intensification of symptoms can also occur in those with especially high MMP9.
If symptoms worsen and VCS falls first in column E followed by column D, then you must stop treatment and recheck MMP9. If MMP9 is rising and VCS is falling in the face of a HERX, this is indicative of active Lyme. Non-Lymies will have stable MMP9."
VCS= Visual Contrast Sensitivity (Test) MMP9= Matrix metallopeptidase 9
I had the VCS test done at my doctors office. Since I failed it, he decided to order lab work. The tests I had were: HLA Dr by PCR, MSH (Melanocyte Stimulating Hormone), VIP (Vasoactive Intestinal Peptide), TGF-beta1 (Transforming Growth Factor Beta-1), and Leptin. He never ordered the MMP9.
I think that my doctor did recently order some more lab work to be done. I am currently waiting to hear from them. Hopefully it includes the MMP9. If not, I will mention it to him.
I don't understand what/where "column E and column D" are on the website. Maybe it is a chart that the doctor has.
Quick question. Do I have to take a probiotic while using the BEG Nasal Spray?
Thank You!
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