In short Lyme has ruined my life.

[sicmetals23]

Thought I would post this as a topic for others to read and perhaps get some assurance that they are not alone in their suffering with Lyme. Unfortunately as so many of us know Lyme disease is treated by many medical professionals as a fake disease. Well I for one disagree with this on just about every level. Then on the flip side you have "quacks" that are trying to do nothing more than extort money from you by miracle cures and treatments. I think it is obvious to most that have late stage Lyme that there is not some fix all, and that holding on to an electrode while counting backwards and crossing your legs isn't going to somehow reverse the damage done by Lyme. I have been living with I now for over 3 years, my condition has not really improved much over that time, just new symptoms, new issues, new pain and swelling and overall poor health. I have arrived now at the threshold of having surgeries to help correct some of the damage cause by Lyme, and honestly it is really difficult to continue. I have a very strong constitution, and desire to succeed in everything in life, but still have always maintained the understanding that not everything is 100% achievable or attainable sometimes. But Lyme has really killed that side of me, the constant pain is exhausting, the bills, the agony and doubts, it just goes on and on. If anyone wants to vent feel free, at this point I think it is all a lot of us have left.

 

[chocolatecoveredpickles]

I've had Lyme for 15 years and have been treating it for 10 months with no improvements. I'm just grateful to finally have a diagnosis, and reading stories from other people with Lyme has been incredibly helpful. Hopefully I can get some practical help and maybe even be of help to someone else with Lyme.

 

[Donewithpain74]

Thought I would post this as a topic for others to read and perhaps get some assurance that they are not alone in their suffering with Lyme. Unfortunately as so many of us know Lyme disease is treated by many medical professionals as a fake disease. Well I for one disagree with this on just about every level. Then on the flip side you have "quacks" that are trying to do nothing more than extort money from you by miracle cures and treatments. I think it is obvious to most that have late stage Lyme that there is not some fix all, and that holding on to an electrode while counting backwards and crossing your legs isn't going to somehow reverse the damage done by Lyme. I have been living with I now for over 3 years, my condition has not really improved much over that time, just new symptoms, new issues, new pain and swelling and overall poor health. I have arrived now at the threshold of having surgeries to help correct some of the damage cause by Lyme, and honestly it is really difficult to continue. I have a very strong constitution, and desire to succeed in everything in life, but still have always maintained the understanding that not everything is 100% achievable or attainable sometimes. But Lyme has really killed that side of me, the constant pain is exhausting, the bills, the agony and doubts, it just goes on and on. If anyone wants to vent feel free, at this point I think it is all a lot of us have left.

I've had Lyme for 15 years and have been treating it for 10 months with no improvements. I'm just grateful to finally have a diagnosis, and reading stories from other people with Lyme has been incredibly helpful. Hopefully I can get some practical help and maybe even be of help to someone else with Lyme.

Do you mind me asking what some of your symptoms were? I have been sick for the last 3 years and would just like to live "normal: again. Be able to walk without difficulty. Be able to not feel like my feet are incased in concrete. To be able to hold onto something without it just dropping out of my hand. The damage that has been done to my nerves and the constant pain is exhausting. Like you, I am now having to have surgeries to take care of the damage that was done during treatment that they did when they couldn't figure out what was wrong with me.
ALSO, how were you finally able to be tested for Lyme and how long after symptoms started were you tested?
I feel your pain and it does help to know you are not alone.

 

[Donewithpain74]

Do you mind me asking what some of your symptoms were? I have been sick for the last 3 years and would just like to live "normal: again. Be able to walk without difficulty. Be able to not feel like my feet are incased in concrete. To be able to hold onto something without it just dropping out of my hand. The damage that has been done to my nerves and the constant pain is exhausting. Like you, I am now having to have surgeries to take care of the damage that was done during treatment that they did when they couldn't figure out what was wrong with me.
ALSO, how were you finally able to be tested for Lyme and how long after symptoms started were you tested?
I feel your pain and it does help to know you are not alone.

 

[Wpwpoet]

Forever. 23 years ago I was bit and 22 years ago I was bit again. My life was ruined. Constant aches and pain. Some days are better than others and the amount of ibuprofen I have to take daily will kill me. The fatigue I use massive amounts of ginseng with gets me through the day. I used to take doxy two months out of the year but that made me so photosensitive that I had to stop. Now I just try to endure

 

[sicmetals23]

I had Lyme for a suspected 18+ months at the time of my diagnosis. I was able to get a test by a local doctor who was brand new to the area. She was appalled that other physicians refused to test me for the disease. My body is so damaged at this point that I might as well die. Lyme or the result thereof is a slow killer. Things continue to decline, cognitive abilities and and everything else. Doctors just seem to blow it off, we live in a very ignorant society today.

 

[LymeSurvivorVeteran]

I'm here to offer all of you a glimpse of hope. I was misdiagnosed and untreated for over 7 years and lost my ability to do anything and everything completely bedridden and now almost 20 years later am still here kicking like a chicken. I know it's hard and it's not easy. I was able to get out of bed and get moving for the first time in over 7 years withing just a month of starting antibiotic treatment. You can't listen to just anybody or just any doctor. Get the best help and even if you just the get the advice of better doctors from far off just get the treatment local and use their guidance. You want the best care possible. I used a med that was considered medicore when it came to lyme and it changed my life. It was the delivery system that was the most important and trust me it worked. And no not IV. I'm not going to go against any one treatment but I know desperation can send you in circles and if your not careful you will just end up broke and if not worse well you know.... The big thing is keeping your head on as straight as possible with all the cognitive issues and write your steps down. Treat yourself like a kindergartner and make good decisions. But most of all you have to have faith that you will get healed and it can happen. I am a walking proof. I still have limitations but where I was, and where I am at; is just absolutely two different worlds. So, yes you can get better but only you can do it and so if your relying on anyone else they will tire and give up. You have to have someone who will be there for you at all times and only one comes to mind. You have to have the best doctors or use their treatment protocols with your local doctors which can be tricky but no hard with online docs. There are all sorts of ways of navigating treatment and yes alot of resistance. I was in a period where you lost your license if you treated lyme then it became acceptable to treat and bingo I was diagnosed later that year. Thought it was too convenient so I had them test me twice at two different labs. Came up with multiple strains and over 7 years no treatment due to a garbage and corrupt medical system, that is paid not to treat lyme, and or face consequences. I will be releasing a guide as I've had access to the best doctors and best of it all. I was personally became friends with the number one doctor in the country for Lyme and internationally and so I have a weatlth of information from so much along with many other doctors that I had working on me. I"m one of the more severe cases as I have severe MCS and had alot to contend with not be able to take certain meds and only able to take one antibiotic but I'm here over 22-23 years later and I'm still fighting and know things that can help all of you. One of my doctors actually was a guard on Plum Island where Lyme was supposedly engineered as a vector bourne illness. He was a Supersonic jetfighter pilot in the war and after became a guard there. His part in the whole Lyme scandal made him want to right his wrong as little as he had to do with it and became a doctor and started treating patients and going against the system to get results. He was around 80 when he got Alzheimer's and retired and was a wonderful added weapon to my arsenal against Lyme disaese. I was fortunate to have him and his information still pulsating in my brain. I had him and a team of the 12 top lyme doctors and it took me everything and cost me alot but I am still here and life is good. I am telling you all this to give you hope and I want to share and help as many as I can and I just don't know if it's something anybody is interested in or not. I have so much first hand info on what does and does not work for me. And all the gimicks along the way. But the money I have spent on Doctors and more importantly the time I've lost because of all that time and Lyme just destroying my body. I just want to help people and I know what I know nobody can get anymore because these people are either dead and or they got Lyme them self. I know the history of Lyme the protocols and all the nonsense of it all and I also know what works and time is not on your side to mess around I can tell you that. You need good help and you need it right away and I'm here to help as much as I can but I just don't know any other way then to drop in here and let you know I will be putting out a Lyme disease guide. That is if I get enough feedback that warrants it. I want to help so feel free to ask anything. But be patient as I am only one person that is why the Guide is so important to me getting that done. It will help you navigate Lyme from beginning to end around all the politics of the disease and all the doctor issues, hopefully getting you to a better state and saving you time and money that you just don't have. It's up to you as I'm not here to force this on any of you but if you are interested I will check back in on this once a day and get back to any answers or questions. I have people that have asked me to do a book and I just honestly want to help the best and at the sametime the most I can. I've got information you just can't get anymore as those who had it literally are either dead or have alzheimers now. So let me know and message me or put something in this forum and I'm here to help. I am only one person but I am going to find a way to help as many as I can.

God Bless,
LymeSurviorVeteran