I've had Lyme for over 30 years, all of my cartilage has been munched away by the bacteria Borrelia Burgdorfi, it loves carilage, I have none, its in my handss wrists spine ankles knees neck and shoulders. Fighting it all these years, I developed Mast Cell Reactive Syndrome, which is a nightmare in itself. I have an excellent doctor, and in treating the MCAS, much pain and inflammation, with the pain meds, is managed and tolerated. It was developed on Plum Island, they infected the ticks, then infected the deer, thing is, deer swam the short distance to the connecticutt mainland. I was 38 years old when I caught it, it has affected me most of my life. I am 73 now, and it was natural healing, strict diets, the Grace of God, that has kept me surviving. There are no reparations for people like me, but, I managed a rich life of nature and homesteading, had a son and raised him as a single mom. Self piity is not allowed in my home. I have tried to get rid of it, and I think it is suppressed right now, but due to the MCAS, I have to be very careful of herxing, the last one had me in the ER going into anaphylaxis. My current doc said it is too late for antibiotics, the amount I would have to have would kill me. I am still healthier than a lot of women my age, but my peers and friendship circle are all old hippie gals who have been anti vax and natural healing before it was embraced by a lot of folks here. I am talking about the women who live in a chemical world, eat tons of crap, and have taken pharma all their lives, not my peer group. My immediate acreage is tick free thanks to the army of chickens I have kept for these 35 years, and I don't wander off my property too much anymore, like hikes and stuff, because a 1 mile walk does me in, anyway. Lyme disease may or may not be cured, but I know there are a lot of snake oil vendors out there, I know, because i have tried them all.
Wow...I am sorry that Lyme has affected you so adversely...I do know others that were permanently disabled and I know this is not something you would choose...but you do the best you can and it sounds like you have chosen to live a good life...did you know when you were bitten by an infected deer tick? Did you have the bull's eye rash? What treatments did you try?
It was 1985, I had the rash, got the flu like symptoms 24 hours later.. I was visiting Vermont to scope out some land and a small cabin for myself, I had taken the train from Florida, where I had been living taking care of my father. On the train ride back I was sick with fever, I thought it was the flu. Nobody knew about Lyme at that point, I thought it was a spider bite I had gotten at the friends farm I was staying out when I went to Vt. Symptoms started bothering me bad as I approached menapause, I thought the arthritis was just misalignment from care giver lifting etc, was tested for it in 1998, came back negative My current doctor did some more sophisticated testing to search for the bacteria, and bingo, it was discovered. Psychologically it was a grieving practice to accept a chronic disease, I never got sick with other stuff, was not one to go to the doctor for common illnesses you catch from your kid when they bring home stuff, lived on Advil, hot baths, ice packs for years. I tried silver, fasting, raw diets, parasite cleanses that were harsh, and herbal, colonics, far infra red, reiki, church healings, the triad of black walnut, artemisia and oregano oil, eating every naturally fermented thing I could buy. I did not know about mast cells, and it is just being discovered as the result of long term illness, molds, chemical sensitivity, NSAIDS, alcoholism, and a possible genetic condition. Treating the MCAS has greatly improved my pain, my brain fog, inflammation, occasional GERD, chronic congestion of sinus, ears, etc. I feel better but I would love a frikkin hot dog with sauerkraut with a nice Belgian white beer, but, healing is one day at a time and I am so grateful for so much. I can be a crippled bitch some days, or feel like it, but I stay away from people then and smoke a joint very much doctor approved, and stream a series or watch youtube, study scripture, I am grateful. Avoid tick bites by all means. I was an avid nature walker and would wade through the most brush ridden wetlands, always in the brush or woods or by the shore, have been bitten many times, they get on your clothing and find a way to skin, if you go bushwacking, hunting, fishing, any outdoorsy thing, even gardening, you have to cover yourself, and check everything when you come in , they can be in your socks and you dont know it. And if you are blessed with some land, get chickens!!! Free range them. Mine are fenced in 3/4 an acre, but once we have a hard frost they have their way all in my gardens till snow, and then they are out till I start planting, of the flowers start coming in. I was raised to remember things could always be worse, and it's helped through life. Bio weapons are here, they will be used, God have Mercy.
Yes. Snake oil. This is exactly what I was getting at in one of my posts where I mention that obtaining treatment is like a wild west landscape!
MCAS. I remember a book that talked about a protocol for it for people with sensitivity. It is called Toxic by Dr. Nathan. It deals with mold, Lyme, mcas, etc. It sounds like you have a great doc and something that is working. I only mention it because you might be able to glean a bit from it.
Herxing. That one would always catch me off guard. Always. For what ever reason I would always think that it would react as flu like symptoms. BUT because it had colonized in my CNS, of course I would get brain inflamation, which would in turn manifest itself as servere depression and suicide ideation. Thankfully my husband started to recognize what was happening. CBD oil would help at this point as I would relearn once again.
It sounds like herxing gets life threatening for you. I am sorry.
thank you. Yes, i was following a strict parasite cleanse, after the 8th day, I had terrible gerd in the middle of the night, followed by head to toe hives, my skin was covered, by the time I got to the ER my pulse was almost 190 and my B/P was 74/32, they had to bolus an IV of a st rong antihistamine and steroids, as the histamine was leaving my body, I had seizures. I am scared to eat ketchup now, lol, because any histamine containing foods could trigger a mild reaction or a crisis. I have an excellent doctor, she is focused on auto immune issues and MCAS. Years and years of my immune system fighting the Lyme bacteria caused the MCAS, Luckily, the maintenance is simple, Claritin, Pepcid AC, and Singular, all put the MAST cells at ease. Believe me, I would have tried Ivermectin, but I dare not risk a die off that would cause a herx reaction again. I have an epi pen I hope I never have to use. Adding to this, I also take Quercitin, Liposomal C B and folic acid liquid, NAC, CoQ10, Special Probiotics, Alpha Lipoic Acid, D, Zinc, Fish Oild and Cod Liver Oil, Selenium, Ginger, Magnesium, and Weed, which I grow myself.
I've had Lyme for over 30 years, all of my cartilage has been munched away by the bacteria Borrelia Burgdorfi, it loves carilage, I have none, its in my handss wrists spine ankles knees neck and shoulders. Fighting it all these years, I developed Mast Cell Reactive Syndrome, which is a nightmare in itself. I have an excellent doctor, and in treating the MCAS, much pain and inflammation, with the pain meds, is managed and tolerated. It was developed on Plum Island, they infected the ticks, then infected the deer, thing is, deer swam the short distance to the connecticutt mainland. I was 38 years old when I caught it, it has affected me most of my life. I am 73 now, and it was natural healing, strict diets, the Grace of God, that has kept me surviving. There are no reparations for people like me, but, I managed a rich life of nature and homesteading, had a son and raised him as a single mom. Self piity is not allowed in my home. I have tried to get rid of it, and I think it is suppressed right now, but due to the MCAS, I have to be very careful of herxing, the last one had me in the ER going into anaphylaxis. My current doc said it is too late for antibiotics, the amount I would have to have would kill me. I am still healthier than a lot of women my age, but my peers and friendship circle are all old hippie gals who have been anti vax and natural healing before it was embraced by a lot of folks here. I am talking about the women who live in a chemical world, eat tons of crap, and have taken pharma all their lives, not my peer group. My immediate acreage is tick free thanks to the army of chickens I have kept for these 35 years, and I don't wander off my property too much anymore, like hikes and stuff, because a 1 mile walk does me in, anyway. Lyme disease may or may not be cured, but I know there are a lot of snake oil vendors out there, I know, because i have tried them all.
Wow...I am sorry that Lyme has affected you so adversely...I do know others that were permanently disabled and I know this is not something you would choose...but you do the best you can and it sounds like you have chosen to live a good life...did you know when you were bitten by an infected deer tick? Did you have the bull's eye rash? What treatments did you try?
It was 1985, I had the rash, got the flu like symptoms 24 hours later.. I was visiting Vermont to scope out some land and a small cabin for myself, I had taken the train from Florida, where I had been living taking care of my father. On the train ride back I was sick with fever, I thought it was the flu. Nobody knew about Lyme at that point, I thought it was a spider bite I had gotten at the friends farm I was staying out when I went to Vt. Symptoms started bothering me bad as I approached menapause, I thought the arthritis was just misalignment from care giver lifting etc, was tested for it in 1998, came back negative My current doctor did some more sophisticated testing to search for the bacteria, and bingo, it was discovered. Psychologically it was a grieving practice to accept a chronic disease, I never got sick with other stuff, was not one to go to the doctor for common illnesses you catch from your kid when they bring home stuff, lived on Advil, hot baths, ice packs for years. I tried silver, fasting, raw diets, parasite cleanses that were harsh, and herbal, colonics, far infra red, reiki, church healings, the triad of black walnut, artemisia and oregano oil, eating every naturally fermented thing I could buy. I did not know about mast cells, and it is just being discovered as the result of long term illness, molds, chemical sensitivity, NSAIDS, alcoholism, and a possible genetic condition. Treating the MCAS has greatly improved my pain, my brain fog, inflammation, occasional GERD, chronic congestion of sinus, ears, etc. I feel better but I would love a frikkin hot dog with sauerkraut with a nice Belgian white beer, but, healing is one day at a time and I am so grateful for so much. I can be a crippled bitch some days, or feel like it, but I stay away from people then and smoke a joint very much doctor approved, and stream a series or watch youtube, study scripture, I am grateful. Avoid tick bites by all means. I was an avid nature walker and would wade through the most brush ridden wetlands, always in the brush or woods or by the shore, have been bitten many times, they get on your clothing and find a way to skin, if you go bushwacking, hunting, fishing, any outdoorsy thing, even gardening, you have to cover yourself, and check everything when you come in , they can be in your socks and you dont know it. And if you are blessed with some land, get chickens!!! Free range them. Mine are fenced in 3/4 an acre, but once we have a hard frost they have their way all in my gardens till snow, and then they are out till I start planting, of the flowers start coming in. I was raised to remember things could always be worse, and it's helped through life. Bio weapons are here, they will be used, God have Mercy.
Thank you for sharing...God bless you and yours...
Yes. Snake oil. This is exactly what I was getting at in one of my posts where I mention that obtaining treatment is like a wild west landscape!
MCAS. I remember a book that talked about a protocol for it for people with sensitivity. It is called Toxic by Dr. Nathan. It deals with mold, Lyme, mcas, etc. It sounds like you have a great doc and something that is working. I only mention it because you might be able to glean a bit from it.
Herxing. That one would always catch me off guard. Always. For what ever reason I would always think that it would react as flu like symptoms. BUT because it had colonized in my CNS, of course I would get brain inflamation, which would in turn manifest itself as servere depression and suicide ideation. Thankfully my husband started to recognize what was happening. CBD oil would help at this point as I would relearn once again.
It sounds like herxing gets life threatening for you. I am sorry.
thank you. Yes, i was following a strict parasite cleanse, after the 8th day, I had terrible gerd in the middle of the night, followed by head to toe hives, my skin was covered, by the time I got to the ER my pulse was almost 190 and my B/P was 74/32, they had to bolus an IV of a st rong antihistamine and steroids, as the histamine was leaving my body, I had seizures. I am scared to eat ketchup now, lol, because any histamine containing foods could trigger a mild reaction or a crisis. I have an excellent doctor, she is focused on auto immune issues and MCAS. Years and years of my immune system fighting the Lyme bacteria caused the MCAS, Luckily, the maintenance is simple, Claritin, Pepcid AC, and Singular, all put the MAST cells at ease. Believe me, I would have tried Ivermectin, but I dare not risk a die off that would cause a herx reaction again. I have an epi pen I hope I never have to use. Adding to this, I also take Quercitin, Liposomal C B and folic acid liquid, NAC, CoQ10, Special Probiotics, Alpha Lipoic Acid, D, Zinc, Fish Oild and Cod Liver Oil, Selenium, Ginger, Magnesium, and Weed, which I grow myself.