Guest guest Posted March 24, 2012 Report Share Posted March 24, 2012 Cee Cee- Sent you a couple emails with name of someone who can refer you to a Lyme doctor. Outrageous you already have a picc line placed but are not being treated for Lyme. Hang in there. Aandraya Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2012 Report Share Posted March 24, 2012 Hi Cee Cee,I read your email last night before I went to bed and I hear your desperation loud and clear. Feel free to call me as a friend and I will send you a private email message with my phone number. If you can't afford the phone call you can call me and I will call you back. I have some of the same diagnoses you have and I can sure share with you what I have done. I am involved in heavy duty Lyme and coinfection treatment now myself, often not feeling very good at all, but I know what the options are if I don't do treatment. We are stuck between a rock and a hard place. I have improved considerably already, but for me there is a long long way to go. So I keep whacking away at it.I have to say a few things... first off, you can't not eat. Your body is already going through so much and this will lower your ability to get well and will not rally your immune system if you don't eat or forget to eat. How about juicing? I would treat your situation like you have cancer and juice for heavy nutrition, focusing not on fruit which would feed candida and fungus, etc., esp. with mold exposure, but focusing more on greens, adding only as much fruit as necessary to make the juice taste good, with things like red beets for sweetness. I had cancer 13 years ago and did a lot of juicing and took herbals. I know how hard it is to eat when you have no appetite, but just sipping juices made by you may gradually help you to start feeling better, esp. since you have nutritional deficiencies. Protein could be from some good source of protein put into a juice shake too. I know Dr. Mercola uses protein powders for his morning juice, also raw eggs from a good natural source. The anemia is a situation that needs to be handled asap. Always cook with an iron skillet if you have anemia and take iron. My husband has hemochromatosis which means he has too much iron and it is genetic... his dad had it too, so I don't use anything iron in cooking. He gets rid of blood which is not reused because he has Lyme too and people with Lyme should never give blood to be used by the general population. It should be discarded. Also don't forget about taking Vitamin C in high enough doses to help build up your immune system again. It is so important. Linus ing wrote books about the benefits of Vit. C and when you are sick you need so much more of it. It helps when nothing else is working. My husband megadoses with Vit. C when he is sick and it really helps him. I don't megadose, but I do take a lot of Vit. C.Have you tried colloidal silver to help with the fungal issues? I know it helps a lot with fungus in the mouth. I use it sometimes. I just am recovering from a case of gastritis which affects my appetite, which can be caused by a ton of different things, including viruses. I've had it a half dozen times since getting CFS and fibro which now I believe was Lyme from the very beginning 26 years ago. My situation has been complicated by many of the same things you have, but not all. I have more support than you do and my older brother paid for my treatment with an LLMD for the first year. My father-in-law paid for my husband's treatment. I'm sorry you don't have this advantage. We are on our own now financially to deal with our illnesses. My doctor prescribes Doxy and Rifampin for me currently, but about 2 months ago added in injections of Bicillin which I get from animal medical supply stores (my husband gives me injections). Some people do give themselves these injections, but more difficult to do. My LLMD believes the Bicillin can be just as effective for many people as IV meds and has seen remarkable changes in people. The Bicillin with needles and syringes costs me about $35 for probably 4 months worth of injections. You have to take heavy probiotics and antifungals during this time to counter the heavy injections and oral antibiotics - Bicillin is a type of penicillin which is long acting and usually used for cattle. The combination of Doxy and Rifampin are to address the Bartonella which I have. I had at least 3 different negative Lyme tests, but I am not concerned about that. I finally got a positive Lyme test through IGeneX 3 years ago and know it to be accurate. I am sure you have Lyme and coinfections, plus fungal issues - they attract all kinds of nasty things TO you so if you have the port for IV already it seems like it would be a natural to start getting some Lyme meds in and try once again to recover. Don't give up. Some of us have been near death or thought we were, but are gaining strength. I think we may have something else that is unique to Lyme and coinfections which maybe others with just Lyme or coinfections don't have... maybe it is some type of parasite delivered through bird mites, don't know. Possible, however. But as you get stronger that aspect can be addressed down the line. That is what I am doing. I too hate that my life must involve so much thinking about health. I have two young granddaughters too that I want to be around for. When I got cancer 13 years ago I asked God to just give me time to see my daughter graduate from high school and was not sure I would get it. I had late stage uterine cancer. I got what I wanted. Then she graduated from college, is married and has children. My kids are a big part of my joy. Now I want to see my granddaughters graduate from high school. I think for me this whole process is getting right with God too. This comes first. Let the people in your church know your needs. They can help. Almost all churches have people that want to help. I'm workin' on my own spiritual life and it is a work in progress.From: "Aandraya" <aandraya@...>bird mites Sent: Saturday, March 24, 2012 11:13:23 AMSubject: CeeCeeCee Cee-Sent you a couple emails with name of someone who can refer you to a Lyme doctor. Outrageous you already have a picc line placed but are not being treated for Lyme. Hang in there.Aandraya------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2012 Report Share Posted March 24, 2012 Cee Cee,This didn't go through the first time, so see below. From: Goldstein@...To: bird mites Sent: Saturday, March 24, 2012 12:41:29 PMSubject: Re: CeeCeeHi Cee Cee,I read your email last night before I went to bed and I hear your desperation loud and clear. Feel free to call me as a friend and I will send you a private email message with my phone number. If you can't afford the phone call you can call me and I will call you back. I have some of the same diagnoses you have and I can sure share with you what I have done. I am involved in heavy duty Lyme and coinfection treatment now myself, often not feeling very good at all, but I know what the options are if I don't do treatment. We are stuck between a rock and a hard place. I have improved considerably already, but for me there is a long long way to go. So I keep whacking away at it.I have to say a few things... first off, you can't not eat. Your body is already going through so much and this will lower your ability to get well and will not rally your immune system if you don't eat or forget to eat. How about juicing? I would treat your situation like you have cancer and juice for heavy nutrition, focusing not on fruit which would feed candida and fungus, etc., esp. with mold exposure, but focusing more on greens, adding only as much fruit as necessary to make the juice taste good, with things like red beets for sweetness. I had cancer 13 years ago and did a lot of juicing and took herbals. I know how hard it is to eat when you have no appetite, but just sipping juices made by you may gradually help you to start feeling better, esp. since you have nutritional deficiencies. Protein could be from some good source of protein put into a juice shake too. I know Dr. Mercola uses protein powders for his morning juice, also raw eggs from a good natural source. The anemia is a situation that needs to be handled asap. Always cook with an iron skillet if you have anemia and take iron. My husband has hemochromatosis which means he has too much iron and it is genetic... his dad had it too, so I don't use anything iron in cooking. He gets rid of blood which is not reused because he has Lyme too and people with Lyme should never give blood to be used by the general population. It should be discarded. Also don't forget about taking Vitamin C in high enough doses to help build up your immune system again. It is so important. Linus ing wrote books about the benefits of Vit. C and when you are sick you need so much more of it. It helps when nothing else is working. My husband megadoses with Vit. C when he is sick and it really helps him. I don't megadose, but I do take a lot of Vit. C.Have you tried colloidal silver to help with the fungal issues? I know it helps a lot with fungus in the mouth. I use it sometimes. I just am recovering from a case of gastritis which affects my appetite, which can be caused by a ton of different things, including viruses. I've had it a half dozen times since getting CFS and fibro which now I believe was Lyme from the very beginning 26 years ago. My situation has been complicated by many of the same things you have, but not all. I have more support than you do and my older brother paid for my treatment with an LLMD for the first year. My father-in-law paid for my husband's treatment. I'm sorry you don't have this advantage. We are on our own now financially to deal with our illnesses. My doctor prescribes Doxy and Rifampin for me currently, but about 2 months ago added in injections of Bicillin which I get from animal medical supply stores (my husband gives me injections). Some people do give themselves these injections, but more difficult to do. My LLMD believes the Bicillin can be just as effective for many people as IV meds and has seen remarkable changes in people. The Bicillin with needles and syringes costs me about $35 for probably 4 months worth of injections. You have to take heavy probiotics and antifungals during this time to counter the heavy injections and oral antibiotics - Bicillin is a type of penicillin which is long acting and usually used for cattle. The combination of Doxy and Rifampin are to address the Bartonella which I have. I had at least 3 different negative Lyme tests, but I am not concerned about that. I finally got a positive Lyme test through IGeneX 3 years ago and know it to be accurate. I am sure you have Lyme and coinfections, plus fungal issues - they attract all kinds of nasty things TO you so if you have the port for IV already it seems like it would be a natural to start getting some Lyme meds in and try once again to recover. Don't give up. Some of us have been near death or thought we were, but are gaining strength. I think we may have something else that is unique to Lyme and coinfections which maybe others with just Lyme or coinfections don't have... maybe it is some type of parasite delivered through bird mites, don't know. Possible, however. But as you get stronger that aspect can be addressed down the line. That is what I am doing. I too hate that my life must involve so much thinking about health. I have two young granddaughters too that I want to be around for. When I got cancer 13 years ago I asked God to just give me time to see my daughter graduate from high school and was not sure I would get it. I had late stage uterine cancer. I got what I wanted. Then she graduated from college, is married and has children. My kids are a big part of my joy. Now I want to see my granddaughters graduate from high school. I think for me this whole process is getting right with God too. This comes first. Let the people in your church know your needs. They can help. Almost all churches have people that want to help. I'm workin' on my own spiritual life and it is a work in progress.From: "Aandraya" <aandraya@...>bird mites Sent: Saturday, March 24, 2012 11:13:23 AMSubject: CeeCeeCee Cee-Sent you a couple emails with name of someone who can refer you to a Lyme doctor. Outrageous you already have a picc line placed but are not being treated for Lyme. Hang in there.Aandraya------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2012 Report Share Posted March 24, 2012 Cee Cee,All of the information I gave you is just from my own experience, but I hope it gives you some ideas and comfort. From: Goldstein@...To: bird mites Sent: Saturday, March 24, 2012 12:41:29 PMSubject: Re: CeeCee Hi Cee Cee,I read your email last night before I went to bed and I hear your desperation loud and clear. Feel free to call me as a friend and I will send you a private email message with my phone number. If you can't afford the phone call you can call me and I will call you back. I have some of the same diagnoses you have and I can sure share with you what I have done. I am involved in heavy duty Lyme and coinfection treatment now myself, often not feeling very good at all, but I know what the options are if I don't do treatment. We are stuck between a rock and a hard place. I have improved considerably already, but for me there is a long long way to go. So I keep whacking away at it.I have to say a few things... first off, you can't not eat. Your body is already going through so much and this will lower your ability to get well and will not rally your immune system if you don't eat or forget to eat. How about juicing? I would treat your situation like you have cancer and juice for heavy nutrition, focusing not on fruit which would feed candida and fungus, etc., esp. with mold exposure, but focusing more on greens, adding only as much fruit as necessary to make the juice taste good, with things like red beets for sweetness. I had cancer 13 years ago and did a lot of juicing and took herbals. I know how hard it is to eat when you have no appetite, but just sipping juices made by you may gradually help you to start feeling better, esp. since you have nutritional deficiencies. Protein could be from some good source of protein put into a juice shake too. I know Dr. Mercola uses protein powders for his morning juice, also raw eggs from a good natural source. The anemia is a situation that needs to be handled asap. Always cook with an iron skillet if you have anemia and take iron. My husband has hemochromatosis which means he has too much iron and it is genetic... his dad had it too, so I don't use anything iron in cooking. He gets rid of blood which is not reused because he has Lyme too and people with Lyme should never give blood to be used by the general population. It should be discarded. Also don't forget about taking Vitamin C in high enough doses to help build up your immune system again. It is so important. Linus ing wrote books about the benefits of Vit. C and when you are sick you need so much more of it. It helps when nothing else is working. My husband megadoses with Vit. C when he is sick and it really helps him. I don't megadose, but I do take a lot of Vit. C.Have you tried colloidal silver to help with the fungal issues? I know it helps a lot with fungus in the mouth. I use it sometimes. I just am recovering from a case of gastritis which affects my appetite, which can be caused by a ton of different things, including viruses. I've had it a half dozen times since getting CFS and fibro which now I believe was Lyme from the very beginning 26 years ago. My situation has been complicated by many of the same things you have, but not all. I have more support than you do and my older brother paid for my treatment with an LLMD for the first year. My father-in-law paid for my husband's treatment. I'm sorry you don't have this advantage. We are on our own now financially to deal with our illnesses. My doctor prescribes Doxy and Rifampin for me currently, but about 2 months ago added in injections of Bicillin which I get from animal medical supply stores (my husband gives me injections). Some people do give themselves these injections, but more difficult to do. My LLMD believes the Bicillin can be just as effective for many people as IV meds and has seen remarkable changes in people. The Bicillin with needles and syringes costs me about $35 for probably 4 months worth of injections. You have to take heavy probiotics and antifungals during this time to counter the heavy injections and oral antibiotics - Bicillin is a type of penicillin which is long acting and usually used for cattle. The combination of Doxy and Rifampin are to address the Bartonella which I have. I had at least 3 different negative Lyme tests, but I am not concerned about that. I finally got a positive Lyme test through IGeneX 3 years ago and know it to be accurate. I am sure you have Lyme and coinfections, plus fungal issues - they attract all kinds of nasty things TO you so if you have the port for IV already it seems like it would be a natural to start getting some Lyme meds in and try once again to recover. Don't give up. Some of us have been near death or thought we were, but are gaining strength. I think we may have something else that is unique to Lyme and coinfections which maybe others with just Lyme or coinfections don't have... maybe it is some type of parasite delivered through bird mites, don't know. Possible, however. But as you get stronger that aspect can be addressed down the line. That is what I am doing. I too hate that my life must involve so much thinking about health. I have two young granddaughters too that I want to be around for. When I got cancer 13 years ago I asked God to just give me time to see my daughter graduate from high school and was not sure I would get it. I had late stage uterine cancer. I got what I wanted. Then she graduated from college, is married and has children. My kids are a big part of my joy. Now I want to see my granddaughters graduate from high school. I think for me this whole process is getting right with God too. This comes first. Let the people in your church know your needs. They can help. Almost all churches have people that want to help. I'm workin' on my own spiritual life and it is a work in progress.From: "Aandraya" <aandraya@...>bird mites Sent: Saturday, March 24, 2012 11:13:23 AMSubject: CeeCeeCee Cee-Sent you a couple emails with name of someone who can refer you to a Lyme doctor. Outrageous you already have a picc line placed but are not being treated for Lyme. Hang in there.Aandraya------------------------------------ Quote Link to comment Share on other sites More sharing options...
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