Hello to everyone! Im glad to have found a support group for this troubling disease. I am 37 years old and on March 29th 2015 my daughter and I went for a walk in our back woods. I live in PA. A few days later, I felt sudden onset shortness of breath. Continued to get worse, developed heart rate in the 160's and a bundle branch block according to EKG. Then to sum it up, I felt like I was dying. Was admitted to hospital, had several tests, but no answers and was sent home. Continued for 6 weeks with this, feeling like absolute hell with new and awful symptoms appearing everyday. My anxiety was horrible, for I didn't know why I was so sick, was missing work and not being a very good Mom. I couldn't get off the couch. I am an RN of 16 years and wracked my brain daily with what this could be. Then one morning I woke up with severe hip/knee/back/neck pain when I suddenly had a lightbulb go off! I HAVE LYME DISEASE! Did not recall a tick bite though. Lyme titer came negative but demanded to be put on Doxycycline immediately. My doctor did and I slowly began to feel better. My EKG now is completely normal. I feel lucky to have the knowledge and know to be an advocate for myself. I feel so sorry for the people who went down this road for months with no answers. I just couldn't imagine that.
My question for you all, is did I catch this in time? I am day 15 of 30 days Doxy. Continue to feel better each day with minor set backs such as trembling, nausea, calf pain, shortness of breath. Way better than it was. It troubles me though that everyday/night my temp has never gone below 99.0. its always anywhere between 99.0-100.5. Is this to be expected? Thanks to all of you for reading my story. Im glad to be here with you all. I rather not have ever experienced Lyme, but it is what it is and I need to repair myself physically, emotionally, spiritually for it has stolen it from me!
Erin I Would love a friend to chat with. No one quite understands this illness unless you had it! Yep, all my doctors were clueless. Looking back on it all, it really makes me very upset. I just hope that the 30 days kicks it out of my system but I keep reading everywhere that 20-30% of acute Lyme patients go on to have it chronically. The thought of that puts chills in my spine. I made an apt with an LLMD where I live but they are booked to October!!!!!! I can't handle that! Is there a website that you know of that has a list of LLMD?
PA is also a hotspot. For goodness sakes I live in the woods/country. Docs just don't get it. So frustrating. The more people I tell I have Lyme to, the more I realize how many other people do too. I feel there should be a vaccine for this. Ive never suffered like I did these past 2 months. Good talking to you! KIT!
Sounds like you are on the right track. leigh. A couple of things there is no eveidence LONGER ABX treatment has any phisological benfit.So while symptoms can persist beyond the initial dosage, the immune system continues to work. The body takes loner to heal.
Real infectious disease docs are finding some success with pulse therapy. I have reviewed some of the initial studies, and it looks good. Continuous ABX is very harmful and in fact has lead to some severe problems for the general population. We are seeing some outbreaks of some strange things.
There is so much nonsense out there about lyme its hard to separate sometimes. However while about 10% - 20% have symptoms that persist beyond a few weeks, over 80% of that number recover fully within 18 mos.
It is a good example of how activism without scientific knowledge can harm patients. Unfortunately, for Lyme patients, politics continues to get in the way of what should be a cooperative effort toward better research, more accurate tests and more effective treatments.
The lab that vaccine was in sight of Willy Burgdorefers window. did a lot of math for those people....... FWIW it is going to save Millions of lives one day. It is now in the hands of the NIH who put into in the US army labs. With some minor variations it is an EBOLA vaccine. It has been used for other purposes as well.
Willy was convinced that the ILDAS stood in the way for their own purposes.
I am from PA too. When I got bit, I did not develop a rash so my Primary Care Physician did not want to order the Lyme test. I insisted and it came back positive. I am on a 14 day course of Doxycycline now. It feels weird to have something I do not understand. I hope to find answers here and wish the best for you Leigh.
Hello there! So i am finishing day 60 of my doxy today. I feel 100% better and thank God for that every day. I on occasion have some butterfly like muscle twitches and chest discomfort but hope that will go away eventually. Its not a big deal. Can you clear something up for me though? I have so much about the cyst form of Lyme. My ID doctor doesn't believe in it. What are your thoughts? Should I have taken more than just doxy? Thanks so much for your time. There is so much info online I don't know what to believe. Disturbing.
Leigh
tj1 said:
The lab that vaccine was in sight of Willy Burgdorefers window. did a lot of math for those people....... FWIW it is going to save Millions of lives one day. It is now in the hands of the NIH who put into in the US army labs. With some minor variations it is an EBOLA vaccine. It has been used for other purposes as well.
Willy was convinced that the ILDAS stood in the way for their own purposes.
Hello there! Sorry for delay in response. I'm kinda still figuring out how to use this website. Im sorry you were bit. Ticks are just awful where I live. I am a nurse at a local hospital and we are seeing so many cases, resulting in pacemakers often. Today is my last day of doxy. I did a total of 60 days. Phew that was a long road. I am 100% back to myself thank the dear Lord. I have some strange muscle twitching still but its no big deal. How are you doing? BTW, they say atlas 28 days of doxy. Please try to convince your doctor to do so.
Leigh
PhoenixRisen said:
I am from PA too. When I got bit, I did not develop a rash so my Primary Care Physician did not want to order the Lyme test. I insisted and it came back positive. I am on a 14 day course of Doxycycline now. It feels weird to have something I do not understand. I hope to find answers here and wish the best for you Leigh.