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.
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
And thank you for saying I have long shiny hair. This picture was taken about a month before I got sick and I still looked like a healthy person.
Now I look like I got ran over by a semi about 5 times. I've lost close to 20 pounds and I am losing hair like crazy. Not to mention the blood shot and swollen eyes.
I really appreciate all of your advice. I had my thyroid blood work run and that came back "normal" according to my doctor. I am still waiting on the results of my thyroid antibodies and the results of my thyroid ultrasound. I am concerned because I have so many lumps in my throat area.
I posted a separate discussion post about this but has anybody every heard of Dermatomyositis or Polymyositis? I got the results back from my EMG this morning and some of the findings were abnormal. They want me to go to a Neurologist to get tested for these things. However, while reading online I found that these things are typically treated starting with cortisone shots. I know cortisone shots can be bad for people with Lyme.
This is such a neverending cycle!
Ask any questions that are on your mind. There are good people here who can point you in the right direction, or help you see that you're not alone and that things will improve. Many of them have done extensive research and have lots of resources at their fingertips. And if not, can point you to someone who does have information on the resources. There is so much strength in our sharing here.
I keep a banner on my ancient cell phone, so that each time I open it, I see, Believe, hon. :) That's a bit of a play on being from Baltimore, (hon), and I've changed the saying over the course of my treatment, but each saying reminds me of the good things that are happening, and that I am healing. This stuff makes a world of difference in recovery.
All of this Lyme stuff is so overwhelming in the early going. You just need a starting point right now and a point person as well. An LLMD is a good point person, because unlike other physicians, they know about so much about the where, why and how of how Lyme can affect so many of the body systems and end up looking like and mimicking so many other illnesses. A good LLMD will help you get on track and keep you on track.
Of course the thyroid tests that you are having are important. And I've not heard of Dermatomyositis, but I have to say that I just glanced at list of symptoms and all the symptoms there are also part and parcel for Lyme. It can be baffling and confusing. I'm not making a judgment on whether this is or isn't, but just urging you to get your tests, but move on to the Lyme doctor as well.
Just take first things first and phone that LLMD. From there you'll be tested and a lot of your questions may be answered in just those first tests and in that first visit with the doctor. The intake appointment with LLMDs is usually quite comprehensive. I recall sitting in mine, over two years ago with my daughter (who is your age), because I was too sick to take in all that was going on, and wanting to cry because FINALLY, after all this time, someone understood and all of my strange symptoms. They weren't at all strange to this doctor and with that reassurance a huge weight came off of my shoulders. I was no longer alone in this thing. Had I not been so totally exhausted at that point, I would have cried in relief!
I'm not a physican and your physician may see something that causes him to suspect this Dermatomyositis as culprit in your symptoms and concern for your thyroid beyond a hypothyroid state, but it may be that all this turns out to be Lyme related. Get the tests, and see what the outcomes are, but get yourself in to see a an LLMD too. All of this may unravel to be Lyme related. The lists of symptoms covered by Lyme are so long and overwhelming. It's no
wonder you feel overwhelmed. Most of us have been pretty certain, at some point prior to treatment, that we may be losing our minds, or dying. Those are also common feelings. So many of the symptoms of Lyme and the coinfections that many or most of us have, are also symptoms of other illnesses, so it can all be quite baffling. The good news then? It's that with treatment, so many of these things start to abate or disappear entirely.
Just to help yourself out right now, check these links on thyroid. It's vital to be an informed patient. Also if you have your blood test results, check them against these numbers. http://thyroid.about.com/od/gettestedanddiagnosed/a/normaltshlevel.htm
http://thyroid.about.com/cs/testsforthyroid/a/freet3.htm
One article talks about the new standards for thyroid testing, which my LLMD confirmed. The point is that many doctors now realize that though their patients test within the normal limits, their bodies are functioning as though they're hypothyroid and many physicians are now treating the patient and not just the numbers. Now, of course, if your test numbers put you at the higher levels of normal, then a doctor would have to think more than once before treating for hypothyroid.
By the way, have you noticed any loss of hair on the outer third of your eyebrows? That's also a hypo-t symptom.
Take the thyroid issue and your test results along with you when you see your new LLMD. I'm willing to bet that you'll get the help that you need there. I can't stress too much that you need to get an appointment with a good Lyme doctor.
Okay, hon. First things first. One step at a time. And you are on your way to healing.
My husband is amazing but he works a lot and I am lot to deal with right now.
My job has been really amazing during all of this and they are letting me do a lot of work from home because I can barely drag myself into the office in the morning - especially in the NYC subway!
Laurie -
You have no idea what your kind words and advice mean to me. Your posts actually bring me to tears. I have my mom and my husband on my side but to actually be able to communicate with somebody that knows the struggle I am going through is amazing. I really appreciate all of your kindness and admire your strength through your struggle as well. I am so happy to hear how well you are beginning to do.
I feel like my mom being here will help me a lot. She will be able schedule these doctors for me and be by my side when my brain is fuzzy and I don't even remember what to ask these doctors or tell them what my symptoms are. I am hoping to be able to see this LLMD next week and I will follow up on the rest after if he doesn't have all the answers I am looking for.
Above all I just want to be happy again. It would make me almost crazy when my doctors would tell me that this was all anxiety and depression. I got married almost 1 year ago to the most amazing husband in the world, I have amazing friends and family, I was working out and in the best shape of my life, I have a good job and I live in NYC. I had nothing to be depressed about! Other than the fact that I felt like I was dying. I remember when I hit my lowest point and I felt my sickest (about 2 weeks into this). I actually wrote a goodbye letter to my husband and my mother because I was convinced I was going to die in my sleep one night. It was the scariest moment of my life.
Everyday is still scary. I am taking Klonopin to sleep at night (unfortunately). I hate taking a drug that is so addictive but until I am on the correct medication to get me better I really don't have a choice.
I was never much of a religious person before this either and I have recently started to pray. I need to believe in something right now.
There is a really beautiful song that somebody told me about today.
It's by Rob Thomas and it's called "Her Diamonds".
I guess his wife has an autoimmune disorder similar to lupus and he wrote this song about her and about how helpless he felt because he couldn't do anything about her pain. I listened to it with my husband and we both cried.
Thank you again Laurie for being so nice and bringing some sunshine into my day :)
I'm so glad that my words helped you in some way! That pleases me and brings a smile to my face and is satisfying to me as well.
Your mom will make an amazing difference in your recovery. Have her take tons of notes when you see your doctor. My daughter did this for me at time when my brain simply could not process simple information. She even made me a spread sheet for daily supplements and medications, color coded! :) Short term memory was shot and my ability to make correlations was kaput! The good news then? Well, you can see my writing now, and though there will be a word here and there that are wrong or misplaced (some of that is due to the format with the small dialogue box in which to type), I am light years ahead of where I as two years ago when I started treatment. There is every reason for hope, hon. Lots of them!
Oh, I'd like slap the doctors and health care providers who tried to convince you that this was all in your head! But hon, it's such a common theme in dealing with Lyme. My LLMD once told me that one of the ways he can tell if someone has Lyme, is that they've been told along the way that they were head cases. Of course I make light, but the point is that Lyme causes these symptoms, and treatment will ease them. The anxiety that you feel is a hallmark of Lyme.
Your life was just fine as it was, as it was for most of us when this hit. I too was a active, an avid trail hiker, loved to do renovation on this old house, loved pedaling my bike around, and used to figure skate as well. It all came to slamming halt. But it will get better. Always remember that.
I'm so, so sorry that you had to go through such a rough and terrifying time, hon. This shouldn't happen to anyone, let alone someone so young. But, get treatment and you're going to heal. You'll get back to doing things that you used to do, feeling the way you used to do, but with more gratitude than ever.
As for the klonopin, use whatever it takes to help you have quality of life while you heal, and deal with the rest when you're well and your body can handle it, is my take on this illness. Above all, you need good sleep in order to heal from this illness. That's when your body repairs itself. So it's vital. I tried for ages to not take a lot of medications, and was smacked in the face when my LLLMD finally told me, point blank, that I wasn't going to heal until I had my pain managed. For me that meant pain medication, as none of the other therapies available to me had managed this pain. My pain levels have been constantly high and head to toe. This past spring, I finally was ready to take that step and it's allowed me a quality of life that I hadn't seen in ages. So we do we need to, while we need to, and for me when I'm better, I think I'll be off of this small amount of medication for pain. But there's no percentage in needless suffering. Take the medications that help you. That's what they're for. I now look at them as tools for healing.
I hear you on your spiritual views. I think that many or most of us also find ourselves delving into our own spirituality. I know that I have, and what I've found, I'm sure, has aided my healing. I mean that. It takes faith of some kind to help put this into perspective and see hope. And there is hope. If you haven't, look into some mindfulness meditation. It will help to keep you in the moment, and that helps healing. It takes practice, practice, practice, but it works!
Okay, dearheart. I listened to you song last night and I cried too. I guess I needed the release. Let us know how you do, please. Blessing to you and yours this day.