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  • Symptoms getting worse... Is it Lymes???

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    Old 10-06-2004, 12:09 PM   #1
    imyy4you
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    Symptoms getting worse... Is it Lymes???

    Hi, I am new to these boards I am quite confused about what is going on with me. I am sicker every day. I have been to a Rheumatologist who says possible Lupus. I have been to a neurologist for my severe headaches. I have been to a ENT for vertigo. I have had spinal taps, blood work, Mris, Cat scans, I have been in the ER twice with severe vertigo and headaches. They thought I had Meningitis. Just to let you know that my Neuro and primary Dr both suggested Lymes but it was negative in the blood twice and in the spinal tap once so it was dropped and they looked elsewhere. Everthing is coming up negative. Now , my primary Dr wants me to get a more detailed Lyme test done. I am sicker every day. I sterted with vertigo, then headaches and low grade fever , joint and muscle pain of course came next and extreme fatigue. Over last weekend I developed some sores in my mouth and on my tongue and have a slight upper respiratory infection, not enough to go on antibiotics but I know its there. Started with sore throat, sore glands in my neck and my chest hurts when I take a deep breath. These symptoms can be Lupus or Lyme disease. I see infectious disease Dr on Friday for a full Lyme workup just to rule that out completely. The headaches have also been bad in the back of my head. This is not your normal headache its like pressure in my head that starts in the back of my head and radiates up and behind my eyes . I feel like my eyes are going to pop out of my head and my whole head feels hot when this happens. :eek My Neurologist gave me Pamelor for the headaches which helped somewhat in the beginning but I feel the headaches coming back. I see him again the end of October. I also see a cardiologist for palpitations and he put me on atenolol. But let me just tell you over the past few days I have had elevated blood pressure 130/90 which mine is never high even being on atenolol, a fever of 99-100 which I have had all along but just feel it more now, pulse rate of 100 or higher and my face is flushed oh and nausea that just started. I seem to be getting new symptoms every day. I was on Pred for a few weeks but gave me side effects so I came off of it. I am on no meds now for these symptoms. Oh and the worst part is I feel like I am losing my mind, I am so fogged and confused about everything and MAJOR mood swings. I feel like a different person. I went totally phychotic on my husband this past weekend, he just looked at me in shock. I am moody at work and cry all the time. Depression is a major factor in my illness. I have seen so many Drs but have not gotten a definate diagnosis. I feel like I have gotten no where. I have been sick since July after returning from a family vacation to Florida. Could all this be linked to Lyme??? This is a mystery. I know I am sick but every time I see a Dr and things are normal, maybe they think I am crazy. Please I am in desparate need of advise. I need answers soon. Maybe the infectious disease Dr. will have some answers . I would feel more comfortable if a Dr was monitoring me more closely. Thanks for all the advice in advance. Kim in NJ

     
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    Old 10-06-2004, 01:27 PM   #2
    SpreadItAround
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    Re: Symptoms getting worse... Is it Lymes???

    Kim,

    Check out my thread:
    [url]http://www.healthboards.com/boards/showthread.php?t=213011[/url]

    I've been having the same exact problems that you are having for two years. The same type of "headaches". You know, not headaches in the traditional sense but a dull ache, pressure that starts in the back of my head and radiates to the front, around my left eye. Feels like I need to let air out of my head. Read my thread for the other symptoms (dizziness, palpitations, chest pain, fatigue, muscle twitching, stiff neck, nausea, sore throat, sleeping problems, etc., etc.) but we're in the same boat.

    I've had every test under the sun (sleep study, MRI, EEG, spinal, SPECT, etc., etc.), some more than once, and nothing, nada. The only positive I got was two seperate but partially positive ELIZA tests for Lyme which one of the doctors dismissed outright.

    I've been diagnosed with occipital neuralgia, migraines and insanity. The people close to me started to think that I was a hypochondriac, depressed, insane, etc., etc., because they don't understand how someone could be so symptomatic and yet have no positive diagnosis for anything from any of the doctors I saw.

    Ah, Pamelor, I was on that, along with a laundry list of drugs you can read about in my thread.

    Anyway, last week I saw an infectious disease specialist who is Lyme literate and she looked at all my tests, listened to my symptoms, talked to me (about where I live and my hobbies) and came to the conclusion that I have Lyme disease.

    Believe me, because of all the misdiagnoses and the fact I'm not sure if I ever got bitten by a tick, I never got a rash or anything, I'm still not convinced.

    But you know what, it sure sounds like it. My Dr. is going to put me on an IV antibiotics treatment for 30 days and take it from there. A mantra I'm sure you can relate to: I'll try anything at this point. So, I'm cautiously optimistic.

    One thing that I've learned is that you have to keep at it. No matter what the doctors tell you, do not accept the fact that you have to feel sick. One of the first neurologists I saw told me that it was possible that I may have to live with whatever it was for the rest of my life. Bzzzz. Sorry! Wrong answer! I immediately switched doctors. Find someone who really cares, someone who listens to you. Because I know, I started to doubt myself but then thought about it. How could I have possibly gone from an indestructable healthy-as-a-horse type to a complete disaster? It's certainly not in my head. You know how you feel and how crappy it is and it's your body, you know when something isn't right and you are sick. Stick to that and don't let anyone tell you different.

    I'm here for ya if you want to talk about it, it's creepy how similar our cases are!

    Tom in CT

    Last edited by SpreadItAround; 10-06-2004 at 01:43 PM.

     
    Old 10-06-2004, 01:40 PM   #3
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    Re: Symptoms getting worse... Is it Lymes???

    Hi imyy4you -

    Sounds like my story for the last five months. The only thing I have tested positive for is active ebstein barr virus. I am waiting on the fourth lyme and coinfections test - done by igenex.

    The other symptom that has been at the forefront of what I have been dealing with is digestive issues. I was just tested for bacterial infection of the small instestine and it came back positive yesterday.

    I am a bit discouraged though because at this point I wonder if all of these infections are starting because my immunity is so low or did it start as digestive problems and bloom into all this other stuff? I don't know.

    I have been getting those headaches too. As well, I get this rash now and then - I also my skin gets so red after being in a hot shower or if I lean on something.

    So strange...

    I hope you find some answers soon.

     
    Old 10-06-2004, 01:47 PM   #4
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    Re: Symptoms getting worse... Is it Lymes???

    wow, sure sounds like you have lyme to me. if dr thinks it may be lyme, even tough tests show neg, they should treat you anyway. the tests are not very good ones. try suggesting to your dr to treat you as if you had lyme to see if your symptoms subside a bit, i bet they will. if it is lyme, you really need to be treated long term to kill it off, and you need to see a good LLMD.
    good luck and i hope you feel better real soon
    karen

     
    Old 10-06-2004, 01:55 PM   #5
    imyy4you
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    Re: Symptoms getting worse... Is it Lymes???

    Hey Tom In CT,
    Thanks for replying to my Lymes issue. I did read your thread and it is very interesting and yes all the symptoms are similar. I have only been sick since July but only recently getting worse. I drove right through a red light today without even blinking. I NEVER do that. Thank god no cars were coming. No cops either. I honestly think I am going crazy. How could someone be so sick and all testing comes up normal?? I do not remember getting bit by a tick either but I did have a clear fluid filled rash on both arms before all the other symptoms started. I do remember that but thought it was something I got from the gym, you know using all the machines after other people. I didnt think anything of it at the time. I never had the bullseye rash. I never saw or felt a tick on me or believe me I would have freaked out if I saw it on me. Just the thought of it freaks me out. I did mention the rash to all the physicians I saw and they said either Lyme or Lupus. I am sorry that you have put up with your sickness for 2 years. My goodness. I hope the IV helps you. I am sure it will. Ya know I do remember a tick being on the back of my leg but this is years ago and I remember running into my husband to get it out of me. I was freaking. It was like 5 or 6 years ago. Could this be from that tick??? I dont think so. Thats just something I remembered. Well I will update you on the Infectious disease Dr on Friday. I also have an appt with Robert Wood Johnson Lyme clinic next month to start treatment if needed. That is a well know hospital in New Jersey. Hopefully they can help me. Keep me posted on your treatment. Good luck.

    Kim

     
    Old 10-06-2004, 02:45 PM   #6
    ncgirl88
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    Re: Symptoms getting worse... Is it Lymes???

    Those liquid filled clear bumps sound like the rash a woman I know had. She was diagnosed with Ehricliosis (i think that is how it is spelled) - a tick coinfection. She was lucky in one sense in that she found the ticks embeded in her thigh so there was no question.

    I ran a red light for the first time last month.

    Hang in there!

    ncgirl

     
    Old 10-06-2004, 06:44 PM   #7
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    Re: Symptoms getting worse... Is it Lymes???

    Hi imyy4you, welcome to the board!

    First, no Lyme test is completely reliable. From what I understand the one most doctors run first, the ELISA or titer, is the least reliable. Do you have copies of your results? Spinal taps show Lyme in only about 5% of cases. I have never heard of a Lyme knowledgeable doctor doing a spinal tap to check for Lyme.

    Be aware that often, infectious disease doctors are not the best to see regarding Lyme. This is not to say the one you see will not be knowledgeable, but if he/she is not do not despair. It is very important to see a Lyme knowledegable doctor. Besides Lyme, ticks can also transmit several co-infections--Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is important to be tested for these because many people who have Lyme are co-infected. To me your symptoms sound like Lyme and one or more of the co-infections.

    There is an excellent Lyme doctor in Jackson. Would you like the name?

    Hang in there okay? Good help is available and you are not alone.

    Last edited by ticker; 10-06-2004 at 06:45 PM.

     
    Old 10-07-2004, 03:08 AM   #8
    imyy4you
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    Re: Symptoms getting worse... Is it Lymes???

    Hi Ticker, Thanks for the note. I am seeing Dr Seigel at Robert wood Johnson Hospital November 4th. He is a Lyme specialist but in the meantime, I need something done til then being that I am so sick. Maybe this ID DR could start doxy or something until I see the Lyme guy. In case that doesnt pan out could you give me the name of the Lyme Dr. in Jackson. I may need second opinion or something. Thanks again for replying to my thread.

    Kim in N.J.

     
    Old 10-07-2004, 06:49 AM   #9
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    Re: Symptoms getting worse... Is it Lymes???

    Hi Kim. The doctor in Jackson is Dr. Emilia Eiras. Maybe you could get an earlier appointment with her.

    Good luck! Keep us posted.

     
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