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
Lyme throws off all the hormones, and body systems. My thyroid has been a wreck the entire time I've been fighting Lyme. Bloo sugar has been all over the place, etc. While it's good to have those checked, the main thing you need is a test for Lyme and other tick borne diseases. People often get other coinfections along with the the Lyme.
The most reliable blood testing is done by a company in CA, which specializes in tests for tick borne diseases, Igenex. A good LLMD would have you tested for Lyme and at least babesia, as if you have that it will have to be treated before Lyme can be treated.
Lyme is diagnosed using both blood tests and a diagnostic impression. I'm not an MD, but my impression is that you have Lyme. A negative test is not an indication of a lack of the Lyme infection. It just indicates that you have a negative blood test. Maybe you don't have enough antibodies for a positive test... yet.
I hope that Dr. House works from the Lyme angle first, because if you have it (and I'm virtually positive that you have it, as they said to me when I walked into a Lyme support group meeting... by the time you get here, you HAVE it!), you need to have Lyme and other tick borne diseases treated before these other symptoms will abate. Good luck!
I really appreciate everybody's advice and I pray that you all are recovering/coping well. I hope to be out of my hell soon as well.
I just try to keep remembering that everything happens for a reason...
Keri
Anything that ever pops up on your body MUST be documented with a photograph before it fades or disappears completely. Then you keep that photo forever as part of your permanent medical history which should also contain copies of lab and test results.
specialists without finding out what's wrong with you. The name of
Dr. Qingcai Zhang comes to mind. He treats people with lyme with
Chinese treatments. I have not been to him but have read favorable
things about him on this site. If you google his name, he has an
interesting website. His number is : 212-573-9584 and is in the city,
Many times people may not test positive for lyme on the Igenex or
Western Blot tests. They, like myself, may still have it. You can
also google lyme literate doctors. I myself would feel more
confident seeing a lyme literate person. That's just me. That's
who I see now. Good luck with this and thanks for you post.
The thing that I am the most confused about is that all the symptoms Keri described would also qualify as"dysautonomia" related to an over--active sympathetic nervous system. That explains the adrenal surges that seem like "panic" or anxiety.
The disease has me puzzled because I have had several diagnoses and all are correct - it just depends on what type of dr. you see. Assuming you can avoid the uneducated drs who say it is "all in your mind," there are excellent drs who come at the "beast" (my word for this disease) from different angles.
Dr. Watkins of the Dysautonomia and Mitral Valve Prolapse Center in Birmingham, Alabama has a wonderful website that lists all of your symptoms, Keri. They deal with the autonomic nervous system dysfunction.
Then, the Fibro and Fatigue Centers (located throughout the U.S.) are very good at testing for co-infections and if you look at the list of symptoms for cfs and fibro, there is an amazing similarity to your list of symptoms and to mine. They diagnosed my fibro and cfs.
Then, there is the immunologist, Dr. Nancy Klimas, that I saw in Miami - she ran sophisticated labs and was the first to find my untreated Lyme. She found a co-infection of HHV6 (also found by the Fibro and Fatigue Center folks) and noted a low/normal thyroid level, a Vitamin D deficiency (which is very common with the beast, so see if someone will test you for it) and she said I have a weak immune system (also common). The trouble for me is that all three doctors are seeing the same thing and coming to different conclusions.
Keri, please look at the Dysautonomia symptoms. Then, check out the wonderful cfs website, aboutmecfs.org for a symptom list. Then look at wonderful Lyme sites (like this one!) and see the symptoms folks have. They are all very similar if not the same. I am being treated by all 3 doctors with Dr. Klimas in the lead since she found the Lyme and is the most current on the research. I don't want to make this all more confusing for you, but I do think seeing more than one knowledgeable (and that is extremely important) doctor can lead to a team approach to getting well. I am sure there are drs in your area working on Dysautonomia and the immunology of cfs and Lyme.
Do any of you other folks have similar stories of having other diagnoses that seem correct as far as they go but are like the 3 blind men describing the elephant? You know, one said it was a thin, rope like animal because he felt the tail. One said it was a long snake like animal because he felt the trunk and the last blind man said it was a sturdy strong animal like the trunk of a tree because he felt the leg. I am just curious to know if you think there is anyone who looks at the whole elephant.
I really hope you find relief very soon, Keri.
That's a very interesting question Hope51, and a lot of interesting information as well. I think that one of the reasons that Lyme can be so hard to diagnose, aside from the poor tests that are generally used, is that it does have many components of an autoimmune disorder. The best, as you put it (and I've called it that too at times, because of it's sheer scope) can and does not only play hide and seek, but also often reeks havoc with all the body's systems.
I think that my Lyme doctor comes closest of all the physicians I've had, of being the one to look at all other possibilities, or health concerns and issues concurrent to Lyme. And it pains me a bit to say that.
What I think I'd like to add to what you said, because you framed your comment very well, is that until Lyme symptoms are treated, if a person does have Lyme, oftentimes it's virtually impossible to see what else might be there until that part of the equation is remedied or at least well on the way. I know that's true for me. But at the same time, my LLMD does take a look at various contributing factors as treating Lyme doesn't stand in isolation. If that sounds like a contradiction, in part it's because it is. But it's also true. Some things can be treated concurrent to the Lyme, some (to my understanding) be treated before. For me, treatment of Babesia Duncani was vital to treatment of Lyme. The first LLMD went first and hardest at the Babesia.
I've noticed that only when some of my symptoms have been gone for a good while, is it then that I realize they're gone! It's been ages since I've had ringing in my ears, and now that I'm on Dr. Zhang's protocol, and my feet are feeling all puffy, as if they're swollen on the bottoms, I realize that it's been a bit since I've had that feeling as well. I think I'm herxing from the HH had he uses for bartonella.
For instance, I have a thyroid problems, which are probably one of the most stubborn of all of my symptoms (aside from sleep, pain and fatigue), in terms of treatment. Even as my Lyme is treated, I'm still dogged by hypothyroid symptoms. I need to see if going on a different thyroid hormone (Armour as opposed to Synthroid) will help to stablize and ease the symptoms. I think that the Synthroid is not only failing to do what it needs to do (though it does help) is making my hair fall out and I'm sick of that one!
So, it all comes down to hair! Well not really, but being female, a lot comes down to hair! :)
The thing I want to impart, above all, is hope. It sounds as though you are early on in this fight, Keri. Get to a LLMD and don't waste time. The particulars of the rest of this you can cover over time, if you need to. But first get to an LLMD . They will likely recommend a test for Lyme through a company called, Igenex (there is one other that's very good, but I can't recall the name now), and may order a test for coinfections (as the tick oftentimes gives the individual more than one infection) as well. The doctor's diagnosis will be based on this and diagnostic impression. Diagnostic impression comes first in the guidelines as there are many false negatives in the testing, due to various causes for many reasons.
The sooner you're treated, the easier it will be to help you recover and the better your outcome. The thing I want to impart, above all, is hope. It sounds as though you're early on in this fight, Keri. Get to a LLMD and don't waste time. The particulars of the rest of this you can cover over time. The sooner you're treated, the easier it will be to help you recover and the better your outcome.
It sounds to me as though you may have a bit of babesia going on, along with the Lyme and maybe another coinfection. The air hunger symptoms, and palpitations are hallmarks of Babesia. Do you also notice any balance problems? Close your eyes while in the shower and see if you list to one side or another. I did, but at my age when it started, wanted to try to pretend it away.
Oh, and I can add to what RosaQ said. I'm on Dr. Zhang's protocol. I've had a very hard time tolerating large doses of antibiotics, but luckily managed to tolerate the antimalaria drugs used for Babesia. This program is working! I am in my 5th month of Dr. Zhang's herbal treatment, am still under the care of my LLMD (agreed, RosaQ, it's best that way, but Dr. Zhang and an LLMD to oversee the patient in person) and doing better with this protocol than I was on low dose abx alone. Much better! Currently doing a bart herx with a change up in the herbs, but that's good too!
For background, I have been on abx off and on for two years, and had two periods, one of 5.5 months of treatment for Babesia Duncani and Lyme using Mepron and azithrymycin, and another period of treatment for 7 months using Malarone and azithrymycin., after prolonged time away from Rx meds, during which break I did a bit better in some ways but was losing ground in others. Tried various other antibiotics, but was unable to tolerate them. Treating Lyme is all about balance. My impression from speaking with Dr. Zhang and with my LLMD is that Dr. Zhang's protocol does better if you can tolerate abx meds first or continue while on his herbal protocol (true for me as I had to add azithromycin back in during this treatment), but that Dr. Zhang's protocol is good as a stand alone program. I sense that it works best after a person has had a good course of abx, though.
But Lyme can cause any and all of the symptoms that you've listed, Keri, and it's pretty much known for causing anxiety, depression and other psychological symptoms. The spirochete crosses the blood-brain barrier, and does it's work in the brain as well as the rest of the body. Those symptoms are also helped by the treatment.
Okay, that's enough from me! Best wishes too all.
Unfortunately I feel as if my doctor is moving too slow for me and I feel as if I am getting worse by the day. Another member on this site recommended an LLMD close to me and I am going to give him a call tomorrow to get an appointment.
This has been going on for too long with no answers.
Please pray for me as I will pray for all of your in your struggles.
What doesn't kill you makes you stronger :)
Or so I have been trying to tell myself...
Keri
Did anybody experience hair loss during all of this?
I have been and at first I thought it was due to the stress (still could be) but I feel like it is getting increasingly worse. I took a shower tonight and couldn't believe all the hair that came out in my brush.
This just keeps getting better and better :)
By the way, you have lovely long, shiny hair. About hair loss, I did and am still experiencing it. It's so frustrating! Lyme plays on all systems of the body and one of them is the most commonly affected is the hormone system, which for many of us end up being our thyroid. The thyroid, in turn, affects a chain of hormones that cascade from there on down, as if the thyroid is the head of the hormone clan. As you may know, the health of your hair, skin and nails is a hallmark of health in general, or lack thereof.
I've been going through frustrating periods of loss and then regrowth for quite some time. I was misdiagnosed for over six years with fibromyalgia and chronic fatigue and so my treatment was significanlty delayed. Of late it's all been trending towards loss without the cycle of regrowth. I'm pretty certain that my hair loss is thyroid related. And even though I'm doing somewhat better it stubbornly persists. I'm pretty sure that mine is now related in part, at least, to being on the prescription, Synthroid, which can in some individuals cause hair loss. I'm looking to be put on Armour Thyroid instead, as it doesn't have this side effect. I need to chat with my doctor.
FYI, most people do fine on Synthroid, and the Armour Thyroid can be a bit tricky to regulate, so most physician's don't deal with it. But overall, being hypothyroid, and untreated for it, can cause hair loss. Too little thyroid treatment for a hypothyriod condition can also cause hair loss. The good news? I've not read of anyone who went bald in the process. But get your thyroid checked out at the same time that you see your LLMD and mention your hair loss to your Lyme doctor as well. It's another important symptom of Lyme. She/he is most apt to be responsive, of all of your medical care givers, in the instance that your thyroid tests in the low normal range, which sometimes happens. It's quite possible to test in the low normal range and still suffer from hypothyroid symptoms and require treatment. Doctors who are more current in their practice of medicine treat thyroid according to the patient's symptoms and not just the test. Plus, the guidelines for hypothyroidism are shifting and and what was once in the low normal range is now considered to be abnormal, though it's been my experience that many doctors aren't aware of this. An LLMD is more apt to be aware of these trends. They see and treat a lot of thyroid problems..
Your list of symptoms, all of them, read like a laundry list of Lyme and coinfection symptoms. Take the list with you to the doctor. In the meantime, though I'm not a doctor, I'd say to be careful with any aerobic activity, until you've seen the LLMD and gotten instructions on how to care for yourself. I can feel that you're very concerned by your heart palpitations and breathing difficulties. They are upsetting.For me, a several month period of working on a graduated exercise program (walking) sent me into a severe downward spiral. The heart symptoms? Those and the air hunger that you're experiencing, are worsened by aerobic activity. In fact for me, it was this downward spiral that forced me to look outside of my fibromyalgia diagnosis for a new diagnosis, which ended up being Lyme, Babesia Duncani and Bartonella.
Take it easy, and see your new LLMD.
Let us know how it goes, please.