Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
KeriBaker
Hi All,
I really appreciate any help or advice anybody can give me.
I woke up the morning of June 26 and my world has not been the same since. I woke up with a terrible headache and stiff neck. I do get occasional migraines so I didn't think too much of it. I had a cup of coffee thinking this might help but shortly after that I got really really dizzy, short of breath, pounding heart and sweaty. My husband took me to the ER. They ran the normal blood work, did a chest xray and did an EKG. Everything came back normal and they basically sent me home telling me I had a panic attack. He actually told me maybe I should drink less coffee - even though I drank 3-4 cups on average per day before all this started.
Ever since that day I have gotten progressively worse. I have been back to the ER 6 times where I learned that they are good for nothing unless you pretty much have a limb hanging off. I have been to 25-30 specialists and they cannot find out what is wrong with me. I have been to GI doctors, ENTS, cardiologists, neurologists, vascular surgeons, numerous primary care physicians. I have even been to a psychiatrist (by request of my mother). He wouldn't even diagnose me with anxiety disorder because he feels there is something physically wrong with me.
I have finally found a good doctor here in NYC. They actually call him the "Real Dr. House". He is currently testing my hormones and thyroid and I am currently waiting for these results to come back. I just want to get some further insigt because if these end up coming back normal as well I want to be able to steer him in another direction.
I recently had an EMG done with my orthopedic surgeon on my arms and neck and so far this is the only thing that has come back abnormal. I have to go in next Tuesday to actually discuss the results, but the doctor doing the test told me that my muscles were extremely tense and this could be due to a lot of different things (back to square one).
I live in NYC and the 2 weekends before this whole thing started, I spend the weekend upstate (about 2 hours north of the city). I was laying in the grass getting tan, playing with the dogs and just having a good summer time. About 2 days before this happened I noticed a large bite/bump appear on my left pinky finger. It swelled up pretty bad for about a day but I never got any kind of "bulls-eye" rash. My finger stayed swollen for a couple of weeks and the bite turned almost a purplish color. I even showed the first ER doctor but he basically dismissed it.
I apologize in advance for the ridiculously long post but I am going to go ahead and post my full range of symptoms -
My symptoms are -
-pounding heartbeat all the time with occasional palpitations, sometimes worse upon lying down
-chest pain with a feeling as if I can't get a full deep breathe in. Saw a pulmonary doc and they did a breathing test. I did badly while breathing out.
-constant anxiety (which I have never had before). Don't know if this is part of what is going on or if this is because I am so worried about what is wrong.
-a constant feeling as if my throat is being squeezed, as well as a lump when I swallow. I have pain on either side of my throat where my thyroid is located (worse on the right side). I recently felt 2 lumps on the side of my windpipe which one of my docs said were probably just lymph nodes but I feel as if they are actually attached to my thyroid.
-almost constant tremors and shaking. This causes frequent urination and diarrhea.
-almost no appetite at all. The first 2 weeks of being sick I lost 15 pounds. When I do eat I have a constant feeling on indigestion and I get full very quickly. I then feel as if I have to burp and while trying I feel like I can't breathe.
-I have extreme muscle pains and joint pains.
-When I lie down I feel as if my jugular distends - each side depending on what side I am lying down on.
-I am always cold and shivering but my body feels like it is on fire inside.
-I went 5 months with no period. I just recently got one 2 weeks ago but it only lasted 3 days. Although I still have menstrual cramps even when I'm not on my period.
-I can see veins in my body that were never visible before. This might sound ridiculous but I feel like I see spider webs all over my legs, hips, arms, chest and neck - and they ache.
-frequent migraines.
-most recently - eye pain. Red eyes with blurry vision. I feel like my eyes are popping out of their sockets.
- A feeling of pressure/pain around my sternum area that makes me nauseated almost all the time.
-Insomnia. The only thing that helps with this is Klonopin because it is a muscle relaxer. The first 2 weeks of being sick I didn't sleep at all - at one point I went for 4 whole nights.
-Lately my neck has been severely stiff and I feel almost like there is a "poison" in my body. That is the only way I can think of to describe it. My veins feel like they are burning with it and my eyes are getting worse every day.
I went to see an opthamologist last week and he told me that I have 20/20 vision (while squinting) and there is really no reason for my eyes to be so red and inflamed. I am going back to see him next week so he can take a look at the muscles surrounding my eyes to see if they are inflamed as well. He said he might be able to give me more information that way.
Based on everybody else's experience - Does this sound like it could be Lymes?
I want to make sure I get tested for everything and do not leave anything out so I want to see whether or not this is something I should request from my doctor to be tested for.
If he does wind up testing me, what tests should be done? I heard that there is a lot of controversy surround Lyme disease and how accurate the tests are.
Thank you so much in advance to anybody that is able to help me.
My life got taken away from me 4 months ago and I just want it back :(
I got married almost a year ago and this should be the happiest time of my life and instead it is the most miserable.
Thank you again & God Bless.
Keri
I really appreciate any help or advice anybody can give me.
I woke up the morning of June 26 and my world has not been the same since. I woke up with a terrible headache and stiff neck. I do get occasional migraines so I didn't think too much of it. I had a cup of coffee thinking this might help but shortly after that I got really really dizzy, short of breath, pounding heart and sweaty. My husband took me to the ER. They ran the normal blood work, did a chest xray and did an EKG. Everything came back normal and they basically sent me home telling me I had a panic attack. He actually told me maybe I should drink less coffee - even though I drank 3-4 cups on average per day before all this started.
Ever since that day I have gotten progressively worse. I have been back to the ER 6 times where I learned that they are good for nothing unless you pretty much have a limb hanging off. I have been to 25-30 specialists and they cannot find out what is wrong with me. I have been to GI doctors, ENTS, cardiologists, neurologists, vascular surgeons, numerous primary care physicians. I have even been to a psychiatrist (by request of my mother). He wouldn't even diagnose me with anxiety disorder because he feels there is something physically wrong with me.
I have finally found a good doctor here in NYC. They actually call him the "Real Dr. House". He is currently testing my hormones and thyroid and I am currently waiting for these results to come back. I just want to get some further insigt because if these end up coming back normal as well I want to be able to steer him in another direction.
I recently had an EMG done with my orthopedic surgeon on my arms and neck and so far this is the only thing that has come back abnormal. I have to go in next Tuesday to actually discuss the results, but the doctor doing the test told me that my muscles were extremely tense and this could be due to a lot of different things (back to square one).
I live in NYC and the 2 weekends before this whole thing started, I spend the weekend upstate (about 2 hours north of the city). I was laying in the grass getting tan, playing with the dogs and just having a good summer time. About 2 days before this happened I noticed a large bite/bump appear on my left pinky finger. It swelled up pretty bad for about a day but I never got any kind of "bulls-eye" rash. My finger stayed swollen for a couple of weeks and the bite turned almost a purplish color. I even showed the first ER doctor but he basically dismissed it.
I apologize in advance for the ridiculously long post but I am going to go ahead and post my full range of symptoms -
My symptoms are -
-pounding heartbeat all the time with occasional palpitations, sometimes worse upon lying down
-chest pain with a feeling as if I can't get a full deep breathe in. Saw a pulmonary doc and they did a breathing test. I did badly while breathing out.
-constant anxiety (which I have never had before). Don't know if this is part of what is going on or if this is because I am so worried about what is wrong.
-a constant feeling as if my throat is being squeezed, as well as a lump when I swallow. I have pain on either side of my throat where my thyroid is located (worse on the right side). I recently felt 2 lumps on the side of my windpipe which one of my docs said were probably just lymph nodes but I feel as if they are actually attached to my thyroid.
-almost constant tremors and shaking. This causes frequent urination and diarrhea.
-almost no appetite at all. The first 2 weeks of being sick I lost 15 pounds. When I do eat I have a constant feeling on indigestion and I get full very quickly. I then feel as if I have to burp and while trying I feel like I can't breathe.
-I have extreme muscle pains and joint pains.
-When I lie down I feel as if my jugular distends - each side depending on what side I am lying down on.
-I am always cold and shivering but my body feels like it is on fire inside.
-I went 5 months with no period. I just recently got one 2 weeks ago but it only lasted 3 days. Although I still have menstrual cramps even when I'm not on my period.
-I can see veins in my body that were never visible before. This might sound ridiculous but I feel like I see spider webs all over my legs, hips, arms, chest and neck - and they ache.
-frequent migraines.
-most recently - eye pain. Red eyes with blurry vision. I feel like my eyes are popping out of their sockets.
- A feeling of pressure/pain around my sternum area that makes me nauseated almost all the time.
-Insomnia. The only thing that helps with this is Klonopin because it is a muscle relaxer. The first 2 weeks of being sick I didn't sleep at all - at one point I went for 4 whole nights.
-Lately my neck has been severely stiff and I feel almost like there is a "poison" in my body. That is the only way I can think of to describe it. My veins feel like they are burning with it and my eyes are getting worse every day.
I went to see an opthamologist last week and he told me that I have 20/20 vision (while squinting) and there is really no reason for my eyes to be so red and inflamed. I am going back to see him next week so he can take a look at the muscles surrounding my eyes to see if they are inflamed as well. He said he might be able to give me more information that way.
Based on everybody else's experience - Does this sound like it could be Lymes?
I want to make sure I get tested for everything and do not leave anything out so I want to see whether or not this is something I should request from my doctor to be tested for.
If he does wind up testing me, what tests should be done? I heard that there is a lot of controversy surround Lyme disease and how accurate the tests are.
Thank you so much in advance to anybody that is able to help me.
My life got taken away from me 4 months ago and I just want it back :(
I got married almost a year ago and this should be the happiest time of my life and instead it is the most miserable.
Thank you again & God Bless.
Keri
Yours certainly sounds like Lyme for sure. I have the name of a doctor in Toronto that I am trying to get a referral for. Its a hurry up and wait and this has been going on for almost four months. I got stuck out in Oregon and had to have someone drive me an my motorhome home. I could move my arms. If you are interested in chatting it would be nice compare notes. Barbara
I would love to chat!
Please feel free to message me and we can compare symptoms and where we have been on this journey so far.
My doctor treats Lyme so I am pretty sure he will order me the correct tests but if he doesn't I think I need to see a Lyme doctor as well.
Mine has been going on for 4 months as well - I miss my life :(
I am also in the NYC area.
My story is very similar to yours. Mis-diagnosed for 2 1/2 years, now in treatment for 1 year. I went to so many doctors, specialists, ER visits. A complete nightmare. I was a healthy guy, now 38 years old. My health too was robbed.
I knew I had been bitten by a tick. I told every doctor that. I insisted over and over that I thought it was Lyme. Several tests were done,all were negative. I later learned that most tests are not at all accurate. Lyme is clinically diagnosed by an LLMD; a Lyme Literate Medical Doctor.
Also important for you to know is that often with Lyme come co-infections. I happen to have Lyme and 2 co-infections. Co-infections, such as babesia or bartonella (the 2 that I have) are treated with different antiobiotics than Lyme.
So, if I were you, I would QUICKLY get to an LLMD. It usually takes time to get an appointment with one. But, it's the only way you will get your life back if it is Lyme and/or co-infections. Also important to know is that most will not be restrained by insurance companies, therefore do not take insurance.
If you don't yet know of an LLMD, messege me if you would like the name of mine, he is brilliant, and has given me my life back.
My symptoms differ some from yours, but you could possibly have different co-infections. Every case is different.
I also had very bad breathing problems; "asthma". I have not had a single asthma attack, have not used a inhaler, havent seen my pulmonologist since I began treatment. My breathing is perfect.
Good Luck to you.
I have a really amazing doctor in the city and they call him "The Real Dr. House". He treats Lyme disease and I'm sure he can help me out with this. Maybe you could message me your doctor's information just in case my doctor won't order me the right things.
Can you tell me what tests they ran for you in order to be diagnosed? Can you also let me know what your symptoms were?
Did you actually see your tick bite?
Any info you have would be amazing. I just want to be diagnosed correctly so I can start some treatment. This has taken my life away. Before this started I was in the best shape of my life. I had just gotten married and never been happier. I have great friends and family, like my job and live in the best city in the country. So when all my doctors tried to tell me I just had anxiety I wanted to scream!
How long did it take for you to start feeling better again?
I definitely have that migraine with the aura as well. It is almost always constant and makes my vision terrible. What Lyme tests were done on you and how did you begin treatment if they came back negative?
Thanks!
im about to start bactrim rifampin and an herbal supplement called cats claw
I sent you a message.
Hi Kerri -
I haven't even started the tests yet! My dr is testing my thyroid first to make sure that is ok and then he mentioned we can look into Lyme disease from there. I hate waiting during all of this. I have been sick for 4 months and the absolute worst feeling is just not knowing what it is. I do remember a bite but I didn't have a bulls-eye rash. Are there tests to determine that you have this for sure? I feel like my dr isn't going to medicate me unless I have tests that come back positive.
I have the lumps/lymph nodes only on one side too. I think that is why my doctor wanted to double check my thyroid. I feel like they are swollen in a chain all up my neck towards my jaw.
My veins have been terrible as well. Along with them looking swollen, they are just more visible - everything. It looks like I have roadmaps on my thighs and hips.
This is the reason I came to this group. This is the only thing that seems to match ALL my symptoms. The thyroid problem matches some but not all.
My regular email is ksieracki26@gmail.com.
I can take a train to Westchester easily - did it take you a long time to get an appointment with your doctor? I really want to see an LLMD but I hear about all these crazy waiting periods and it scares me - I feel like I can't live with this for another day!
Thanks!