Lyme Disease Veteran here to help as much as I can

LymeSurvivorVeteran

LymeSurvivorVeteran

Member
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
 
do you want to list any symptoms you first encountered, like fever etc?
i know a person with recurring fevers, headache, palpitations; but all blood results come back negtive.
is there a urine culture that gives any result?
 
The tests are very inaccurate. Mine were positive but your lab does matter as the way they test it. I tested positive at Lab Corp and Quest. But there are false negatives but no false positives. So you can test negative and still have it according to all my doctors but I tested positive. Which I went 7 years misdiagnosed so it went everywhere so early detection can be harder. I would say get more blood tests from different labs and then see and follow up with your doctor and as far as the urine goes, I've never heard of that if it even exists. I would just get yourself a copy of the results for yourself as well. My doctors for ages lied about my results and I was testing positive for heart attacks but they wrote too young to have them on my chart and told me that I was not having anything go on. The nurses that I got to know real well told me different and so I requested my tests years later, which I wished I had done earlier. And low and behold they were just doing the same bloodwork over and over again lying. So be your own advocate and get a LLMD right away. My big mistake was trusting mainstream doctors. They are mainly just gatekeepers to save the insurance companies money. Get your results and they will say black and white the results most of the time. And anything that is not just take them to a good Doc for interpretation. But always get the advice of good Doctor. And that is hard these days and it was hard in early 2000 when I was mis-diagnosed even more but for different reasons that were political. Keep your head and get good help. You can even send your results to doctors out of your area so just get a doctor to do them where you are at and if you can't locate a good Doc then send them to them and do a video or phone consult and maybe they know someone in the area or keep using them. The blood test though you need to do it more than once and remember false negatives. Some Docs go off symptoms alone but I wanted the test results. Even when I tested positive I asked for a retest from a different lab to be sure an it came back as well. Which shocked my Docs as Quest was so non-sensitive nobody usually came back positive. That was when they knew I was bad off. So I guess I would say keep moving forward don't give up and persistence will get answers. Don't trust lies and deceit of the medical industry. Get your results yourself and look at them. It's not hard to figure out if they are lying and another good Doctor will confirm it. Either way your going to need a good doctor. I don't know if you believe in God. But I would pray that God puts one in your life. You need answers and a good Doctor but put your faith in God to provide it all and do your due diligence. And getting antibiotics early the right ones like Doxy are imperative for your outcome and how far it goes. Also, the longevity of your dosing as it only comes out of cyst form once every 30 days. So inadequate treatment will be no good either. God bless you and your family during this hard time I will pray for you and all family. God will get you through this just do your best and leave the rest to him. But be your own advocate I can't stress this enough. Get your paperwork on everything and read it until you understand it or get someone who does. It's tough but you can get through this.
 
As far a symptoms: retrograde temp I would drop which is common. Heart palpitations. Reactions to caffeine and anything with any stimulant effect including allergy meds. I had to stop all refined sugars. Fatigue that just got worse until literally in bed all the time. Anxiety started in from the damage to my nervous system. Vision issues, cognitive issues(aka brain fog). I was having some general symptoms of weakness at the very beginning and I knew something wasn't right ended up in the Gerneral Doc, then went to GI doc with some gi issues, and eventually cardiologist after 100's of ER visits in one year just running me in circles. I was wiped out and young and made no sense. The meds caused me issues and wrong diagnoses that put me into wrong directions managing that. So it can get very confusing separating what is Lyme and just bad care. I would say fatigue that set on quick and got to the point where I couldn't even drive or walk around the block without collapsing. But that was over the course of the first 6 months but it went fast. Eventually stuck in bed. Extreme hearing sensitivity. Sounds were debilitating in the 3 to 4 month. i had neuro Lyme so I had some issues other's don't experience right away. Shortness of breath easy exhaustion. It goes so fast that you end up bad quick if you don't get treatment fast. Adrenal fatigue. Sharp pains in stomach and heart area. General malaise. Just one thing after the next. It will run you in circles if you don't get to the actual problem running in circles doctor to doctor never treating the actual underlying issue. Keep your head on straight and keep a Journal and get the results and look right away. Do not trust the medical system until you know you have good
Doc and you will know because you will see results and the test's will match the treatment. Hope this all helps. Any questions just ask.
 
I will be working on that shortly. Been very busy lot of family members passing with the covid shot. Took me down this last year. Also having some MCS reactions due to some new neighbors. But I'll be working on it and I will let you know. God bless have a great day.
 
Thank you, my son is dealing with same symptoms, I would appreciate any advice you can give. We are currently seeing a cardiologist for his racing heart. Strangest thing, if he eats one bite of something that has sugar his heart starts racing, and this is sitting down. We have a Lyme doc but no help still, she is more holistic and I think he should be in antibiotics. We use Dr Rawls protocol because it’s all we can get. His newest test say 1 band positive Borrelia with 2 IND. He also test positive for babesia, and has in between for erlichia, he is 23 this has ruined his life. I have been fighting for him for years so many docs. It’s disgusting. His last tests said positive bartinella now this new test says negative. We used IGENx both times. I hope you can point me in the right direction I would be so greatful. Thank you
 
I am so sorry I am only getting back to you now. For some reason I did not see your email and only found it today cleaning out making space as my email was getting full. I am glad I saw and am sorry to hear about your son. I was very young myself when I got it and so I understand your frustration and what your going through along with your son. First and foremost before I say anything as a disclaimer always get the help of a Licensed Doctor and Medical Professional. I am only giving you infromation of what helped me and each case can be very different and severe in different areas. Here are the things that helped me the most:

  1. Look up online an LLMD and look into Vitals.com and Healthgrades.com and check their reviews diligently. Your going to need a good doctor a LLMD(Lyme Literate Medical Doctor). Lots of politics around Lyme treatment don't fall for it and get yourself a good doctor. Not one out to rip you off and waste time.

  2. Antibiotics: Yes I used them and would not be here if I did not. I didn't go traditional IV as the Lyme spirochete can only be killed when it comes out of cyst form which is only once every 30 days. You want to keep antibiotics going so that it kills them 24/7 and so I used eryped ER capsules 250mg. Now most docs will tell you erythromycin will not work for Lyme but is a macrolide antibiotic just like the rest and well I am living proof that it works. I took it with kefir and you want to space it out as far as possible. Your going to need probiotic which is available in any grocery store. You need to put back the good bacteria while killing Lyme when using antibiotics to protect your gut and your immune health so he stays strong and can fight it. Expect bad days and good days all just part of the process and stamina this all out. Your are in for a journey.

  3. Food: You want to get him on a Anti-inflammatory diet. Easy diet for me has been chicken, veggies, and potatoes. Keep his potassium up. Look up online foods to buy and avoid for anti-inflammatory diet. Get him good fats as well. This will do huge. He will start to lose weight and my dietician put me on peanut butter and jelly for lunch and helped huge. Has to be organic jelly or it will drive him nuts. Avoid all refined sugars, any caffeine, basically anything that is a stimulant. This also counts when it comes to meds. Watch out for things like allergy pills with decongestants. Anything stimulating.

  4. Avoid trigger: This part is hard as his lifestyle is going to become restrictive and you want to avoid triggers to get him strong and it can be so much and hard to bear at times. For me it was: fragrances, chemicals. cleaners etc, humidity, hot weather, cold weather, storms as they would come in the pressure which puts pressure on the body, foods, sugars, caffeine, meds like crazy, laundry detergent. fabrics not 100 percent cotton including the core, air quality, overdoing it. This is not something you work off our out of. Do not think your going to just think it or work it away. It's a stamina and keeping your spririts up. God will help in this if you believe. Trust me. There is lots more but your situation is going to be dictated by what co infections he has as there are over 300 that come with Lyme disease. Yes that's right and that is why so many differences. Also, you have the brown legged tick and the black legged tick and that also changes how and what you get from them as they are different as well due to area.
    Black legged tick is from mice. Brown legged tick is from Deer. Very important to know which you think your came from. Your symptoms will be based on which one and which co-infections and strains of Lyme were transmitted. This can all be tested for but keep in mind there are false negatives but no false positive's. So if he's got it he's rare and he's got it. If he comes up negative retest and try a different lab. For me it was 7 years before they would test me due to the politics of the disease in the early 2000's. Doctors would lose their license for treating it and in some places it's still that bad so remember your not just fighting a disease but the politics against treating it as well. Lyme was the only disease that only a paritial IDSA panel decided on how to treat it and did just that under an emergency meeting without the other memebers. Only a few and if I remember correctly 2 of the 8 IDSA panel members chose how not to treat and how to treat Lyme disease. That's right and the other members were outraged and made it known. Look up the documentary Under our Skin. Not the movie with Scarllet Johansen. You will want to watch that right away so you understand what your up against and also so you don't let them push you around and our your son's treatment will suffer.,

  5. Never trust what they tell you; That's right the doctors, nurses, or hospitals will and do lie all the time. So make sure you get copies of all tests and look at them and google what you don't know or talk to a doc online for in depth explanation. They lied to me for 7 years. Trust me they wil and do. The IDSA panel tells doctors how to treat and they have been told so long not do anything helpful outside a few weeks antibiotics when it takse 30 days just to hit the lyme bacteira once on that day the cell walls open and allow antibiotic in. This is so impotant. Get your blood testa and copies of all tests. Stay organized your going to need and your son is going to need it even more as it can start to affect his cognitive and mood as it did me. He may start to get extreme anxitey and even overtime have trouble doing basic tasks. Now mine went on misdiagonosed for 7 years but still it took 6 months and I was bedridden. Fully healthy to allergic to eveythign and not able to do nothing. I even had trouble processing images and watching TV it got so bad and my hearing was heightened overtime to wear I couldn't handly anything. Siezures were my only relief as aftewards I would blackout and get some rest. Prepare your world and stay orgainzed. Get good treament now so it doesn't get that bad. Do not mess around and don't allow yourself to be pushed around. But accept help now and get a support system in place you may need it long term. I'll pray you don't.

  6. Get a Western blot blood test and get copies. This will tell you whether he has it or not. Also get tested for any co-infections.


  7. Babesia; you said he had it I think but either way this one really is tough. Look up air hunger. I still struggle with this but after 7 long term antibiotics it has helped but for me my adult asthma came back on from when I was a child just when I was getting it under control. Breathing is like they say. Those who half breathe half live. Well it left me housebound for 20+ years. So get to treating this right away. This will affect his breathing and so much more. You want to not exercise it away but get good treatment as it's like asthma you can't excercise real asthma away, but you can try to keep your lungs in the best shape possbile while doing it but don't push it.

  8. Fatigue: Do not push yourself or your will hurt yourself. Don't get cocky or tough it out attitude. Your going to go through alot and pushing him will only make him weak and his immune system as well. Keep things in moderation and timing everything to get the best outcome. Look up chronic fatigue sydnrome.


  9. Adrenals- With lyme comes adrenal issues long term. Get tested and aquainted with it read up on it. This will cause the fatigue and if not treated properly with rest and the right foods will get worse. Part of the reason he's reacting to the sugar and so much more.
There is so much more I want to tell you but worn out right now. Message me any questions I will be on the lookout for them. Get a good doctor and fight the good fight. If you don't believe in God now's the time and if you do now's the time to pray and use faith to give him spitual healing on top of everything else. He's going to need it and it's been proven in hospitals that faith heals. So send your questions and once again so sorry to hear anyone outside myself is having to deal with this. God is good keep your head and bless you and your family. He will be in my prayers and tell him not to be the tough guy and push himself as there will be plenty of time where that will be needed, but pushing yourself will cause setbacks. I'm free to talk to him if he needs or you. Just let me know. Typing wears me out more. Godbless
 
Don't fall for gimics there are lots of sales gimicks and cons trying to castor oil desperate people if you know what I mean. Lyme disease gets to be very expensive very quick so focus your money on what counts the most. Any questions just ask
 
Also most protocols are out of the country and do not work and kill people so do your research. Marshall Protocol is one of these that has killed people when administered in Costa Rica.
 
One other thing I have a wealth of information that you just can't find out there because I had the best doctors but one passed away and he actually worked on plum Island where Lyme disease was supposedly started off the coast of Lyme Connecticut. I'm in the process of writing a book with all the information I've been hand from them and my other top 12 doctors from holtorf medical. I'm trying to do it so I can pass along the information to help others. I'm just in a financial situation right now where I'm trying to get stable enough to where I can do just that and also have the energy to do it. But either way I have a wealth information that I know can help and if used earlier will help your son's significantly so any questions you ask. I'm trying to get that done as well so it can get out there to help lots of people and yeah so that's where I'm at. But ask all the questions you need because you need to get his help started as fast as possible because lime replicates every 30 days. When it comes out of that cyst form it also doubles the amount in his body and then doubles upon doubles upon doubles every 30 days. It's like the worst credit card debt in history floating in his bloodstream. It's a long story short if you don't get it on it fast it gets out of control real fast. That's why it's so important you get a Lyme disease doctor. I just started using Google voice just thinking why was I typing the whole time. But either way God bless any questions do you ask I'm going to try and get the book lyme guide finished I want it to be as usable as possible for many. That way people get treatment fast and the treatment they need and get back to life instead of being put down by the system and by lack of information and just not being laid out properly. Either way God bless have a great day and tell your son hang in there God is good and God loves him. God bless you both have a great day.
 
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