The Guaifenesin Protocol
There is so much information out there about Lyme disease but yet there isn’t a lot of consistency to the info and research that’s out there. It’s hard to believe what the right path is for me and my recovery. A lot of treatments involve seeing what they call LLMD or Lyme literate medical doctors. Well we all know our medical insurance companies won’t cover any that. And it’s hard alone to live with a chronic illness and all the money it costs out of pocket in order to try and care for yourself. I’ve already gone down the path of seeing an alternative medicine specialist back before we knew my disease was Lyme. He was an endocrinologist and fibromyalgia specialist. I saw this man once a month for 18 months out in Marina Del Rey. Because it was so far and I physically was so sick and mentally, I had to have someone take me each month. Directions were too hard for me to follow by this point. My mind was just mush. I was on his medicine for a year and a half that he believed was going to help heal my illness and give me my life back. I was ready to get my life back so I dove right in. Now I’m not saying his protocol is bogus. There are thousands of women and men who say he has saved their lives with his protocol and medication. And if I had just fibromyalgia and if his theory was right then I most likely could’ve gotten better. But they do say this protocol is not for the faint of heart, and they were right. Let’s dive into a little bit of what this protocol that I dedicated 18 months of my life to shall we. This is going to be fun. 😜
The Guaifenesin protocol is what it was called. Sounds funny doesn’t it? I was referred to this specialist through a friend of someone who has this disease. She was so sick with pain that she was also bed ridden like me. She has been on this protocol for over 25 years and is living a much better and more functional life. So she will tell you it is worth it! But you have to live a very different life than anyone else around you and you have to follow this protocol to the T or you can do more harm than good to yourself. This man and his 60 plus years of research had determined that taking the medication guafenisen, pure guafenisen, would help our kidneys function properly. His theory is that fibro is a genetic disorder and that the kidneys have a genetic mutation to where they don’t filter out phosphates properly. So these phosphates build back up and get recycled back into our blood stream and create phosphate fluid like deposits all over our bodies that attaches to our muscles and ligaments, joints and even our brain matter depleting our atp and mitochondria which is what helps give our bodies energy! Forcing us to be bed ridden. He also believes that hypoglycemia and fibromyalgia go hand in hand. So he had a very strict diet we had to be on as well. I was to start out taking the smallest dosage of guafenisen in the morning and at night. Oh but here’s the kicker... we could not come in contact with any “salycilates” or it will block this medication from working and make you sicker.
What is a salycilate you ask? Salicylates are derivatives from salicyclic acid that is naturally taken from plants and is in many medications, cosmetics, topical creams, lotions, gels, cleaning supplies, dish soap, hand soap, and even toothpaste, chapstick ect. I could go on! I had to stay away from menthal, anything that had menth in the ingredient, anything that had Sal in the ingredient and blue 1 also was a no no. Also octisalate and homosilate which is in most of our sunblocks. I had to be careful when I walked on fresh cut grass, when I peeled fruit, when I cooked with any oils. I couldn’t chew gum or anything with mint in it. I couldn’t touch anything natural basically. When I had to look for all new products to use, I would spend an hour in the store reading ingredient labels like this for example:
The Guaifenesin protocol is what it was called. Sounds funny doesn’t it? I was referred to this specialist through a friend of someone who has this disease. She was so sick with pain that she was also bed ridden like me. She has been on this protocol for over 25 years and is living a much better and more functional life. So she will tell you it is worth it! But you have to live a very different life than anyone else around you and you have to follow this protocol to the T or you can do more harm than good to yourself. This man and his 60 plus years of research had determined that taking the medication guafenisen, pure guafenisen, would help our kidneys function properly. His theory is that fibro is a genetic disorder and that the kidneys have a genetic mutation to where they don’t filter out phosphates properly. So these phosphates build back up and get recycled back into our blood stream and create phosphate fluid like deposits all over our bodies that attaches to our muscles and ligaments, joints and even our brain matter depleting our atp and mitochondria which is what helps give our bodies energy! Forcing us to be bed ridden. He also believes that hypoglycemia and fibromyalgia go hand in hand. So he had a very strict diet we had to be on as well. I was to start out taking the smallest dosage of guafenisen in the morning and at night. Oh but here’s the kicker... we could not come in contact with any “salycilates” or it will block this medication from working and make you sicker.
What is a salycilate you ask? Salicylates are derivatives from salicyclic acid that is naturally taken from plants and is in many medications, cosmetics, topical creams, lotions, gels, cleaning supplies, dish soap, hand soap, and even toothpaste, chapstick ect. I could go on! I had to stay away from menthal, anything that had menth in the ingredient, anything that had Sal in the ingredient and blue 1 also was a no no. Also octisalate and homosilate which is in most of our sunblocks. I had to be careful when I walked on fresh cut grass, when I peeled fruit, when I cooked with any oils. I couldn’t chew gum or anything with mint in it. I couldn’t touch anything natural basically. When I had to look for all new products to use, I would spend an hour in the store reading ingredient labels like this for example:
I had to do this for everything I knew was going to come into contact with my skin. Which meant I had to give up using my coconut oil and any other natural products and switch to mainly chemically modified products. I had to bring my own shampoo and conditioner to my hair stylist so I didn’t worry about blocking. I had to bring my own hand soap everywhere with me for public restrooms. I had to watch out for the ingredient “blue 1” because that ingredient started showing up and blocking his patients from their medication. Let me tell you, blue 1 is in everything! Why does everything have to be blue these days! 😆
How do you know your blocking? You are sicker than a dog, your foggier and you have more pain and all kinds of other crazy things happening to your body. Now because there is no blood test or any test for that matter to show that you have fibromyalgia, this man says he can feel the phosphate build up in your body in specific areas on your back, neck, thighs, feet, arms and hip areas. And if the medication was working and you had the correct dosage, don’t even get me started on that, then you are clearing and doing everything correctly.
I basically was paranoid to touch anything after some time on this protocol and months of being sick and bed ridden I was under the impression that it was either a dosage flaw or I was using products that were not protocol safe. I thought I was going to go mental. Actually I feel like I did for a while. My poor husband and kids lived with a miserable human being for quite some time during this year and a half. But I was desperate. I was hopeful that this was my cure, my answer. Since no one else could help me and so many people were feeling so much better on this protocol than this was something I had to do if it could guarantee me a better life. I would do just about anything! But it got so complicated, one thing after another with this protocol and I was not progressing one bit. I ended up depressed and hopeless and made me not want to live this life any longer. What was I here for? I couldn’t do anything. I didn’t want to leave my house! I felt so useless and unproductive. This Dr and his theory and protocol seemed to be my answer to getting my life back. Why isn’t it working!? So I asked God many times to just take me home. There was no need for me on earth. I wasn’t getting better and I couldn’t be the mom I was meant to be to my kids, I couldn’t give my husband what he needed, I just felt so worthless. That wasn’t a life I wanted to live for the rest of my life, I felt like they deserved better than what I could give them. I was living in misery every day. I would try and hide it when I would go out in public. I let my kids social lives and extra curricular activities and sports be as normal as I could so that they wouldn’t see or feel my pain. It wasn’t their fault. But I was deteriorating mentally and physically. The decision to go off this medication and be done with the protocol was something I went back and forth with for awhile. If I did, would I get sicker? What if I didn’t give it a longer go? What if it really could work for me, I just needed to give it some time. He said every 2 months on the protocol was 1 years worth of clearing from the beginning of my symptoms. Well that was when I was in my early 20’s so technically I had a good 3 years on the protocol to really see results. But each visit it was something different and the dr told me I’m one of his top 5% of his sickest cases. And I felt like it too.
Something told me right before my sisters wedding to stop and give it a break for a bit. I knew I would be getting my makeup done and I wanted to get a spray tan so I didn’t look like death, and I just didn’t want to have to worry about it for a few days. So I went off of guafenisen. And sure enough I actually started feeling a tad better. I still have my flare ups and my bed ridden days, but they seem to be much more sporadic than when I was taking the medication. I honestly think that taking that medication was stirring up my Lyme disease and pissing it off. It’s not this dr’s fault, I do believe he was trying to help me. I actually blame the medical field and their crappy lab tests and the cdc criteria and their uneducated minds on what now is being considered as an epidemic. Somethings need to change and it needs to happen sooner than later. Too many people and children are suffering from this disease. All that to say, I still believe everything happens for a reason. God still has me close to Him, and I’ll admit I have lost some of that faith and hope I once had. But I know He is leading me towards something greater than I can see. This is my path for a reason. I will keep on going and we will keep on fighting. I have the greatest army that is behind me! We all have a story, this is mine.
How do you know your blocking? You are sicker than a dog, your foggier and you have more pain and all kinds of other crazy things happening to your body. Now because there is no blood test or any test for that matter to show that you have fibromyalgia, this man says he can feel the phosphate build up in your body in specific areas on your back, neck, thighs, feet, arms and hip areas. And if the medication was working and you had the correct dosage, don’t even get me started on that, then you are clearing and doing everything correctly.
I basically was paranoid to touch anything after some time on this protocol and months of being sick and bed ridden I was under the impression that it was either a dosage flaw or I was using products that were not protocol safe. I thought I was going to go mental. Actually I feel like I did for a while. My poor husband and kids lived with a miserable human being for quite some time during this year and a half. But I was desperate. I was hopeful that this was my cure, my answer. Since no one else could help me and so many people were feeling so much better on this protocol than this was something I had to do if it could guarantee me a better life. I would do just about anything! But it got so complicated, one thing after another with this protocol and I was not progressing one bit. I ended up depressed and hopeless and made me not want to live this life any longer. What was I here for? I couldn’t do anything. I didn’t want to leave my house! I felt so useless and unproductive. This Dr and his theory and protocol seemed to be my answer to getting my life back. Why isn’t it working!? So I asked God many times to just take me home. There was no need for me on earth. I wasn’t getting better and I couldn’t be the mom I was meant to be to my kids, I couldn’t give my husband what he needed, I just felt so worthless. That wasn’t a life I wanted to live for the rest of my life, I felt like they deserved better than what I could give them. I was living in misery every day. I would try and hide it when I would go out in public. I let my kids social lives and extra curricular activities and sports be as normal as I could so that they wouldn’t see or feel my pain. It wasn’t their fault. But I was deteriorating mentally and physically. The decision to go off this medication and be done with the protocol was something I went back and forth with for awhile. If I did, would I get sicker? What if I didn’t give it a longer go? What if it really could work for me, I just needed to give it some time. He said every 2 months on the protocol was 1 years worth of clearing from the beginning of my symptoms. Well that was when I was in my early 20’s so technically I had a good 3 years on the protocol to really see results. But each visit it was something different and the dr told me I’m one of his top 5% of his sickest cases. And I felt like it too.
Something told me right before my sisters wedding to stop and give it a break for a bit. I knew I would be getting my makeup done and I wanted to get a spray tan so I didn’t look like death, and I just didn’t want to have to worry about it for a few days. So I went off of guafenisen. And sure enough I actually started feeling a tad better. I still have my flare ups and my bed ridden days, but they seem to be much more sporadic than when I was taking the medication. I honestly think that taking that medication was stirring up my Lyme disease and pissing it off. It’s not this dr’s fault, I do believe he was trying to help me. I actually blame the medical field and their crappy lab tests and the cdc criteria and their uneducated minds on what now is being considered as an epidemic. Somethings need to change and it needs to happen sooner than later. Too many people and children are suffering from this disease. All that to say, I still believe everything happens for a reason. God still has me close to Him, and I’ll admit I have lost some of that faith and hope I once had. But I know He is leading me towards something greater than I can see. This is my path for a reason. I will keep on going and we will keep on fighting. I have the greatest army that is behind me! We all have a story, this is mine.