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  • Possible Neuroborreliosis-what would the herx feel like?

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    Old 02-09-2005, 05:08 AM   #1
    SuzU
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    Possible Neuroborreliosis-what would the herx feel like?

    Hi, I'm still in the diagnosis phase. Actually, I've been diagnosed with Lyme by a homeopathic practitioner using a VEGA machine, but being a nurse and a skeptic, I'm still awaiting the blood work. I have all of the symptoms of Multiple Sclerosis, yet nothing is showing up on my brain MRI's. (I've had two in the past 5 1/2 years.) Of course, my conventional blood work for Lyme has been negative, and last week I had a spinal tap that was also negative for Lyme. Still waiting to hear on the MS front what the tap says.
    I'm seeing Dr.E in NJ. She drew blood to send to the appropriate labs, but I'm in that three week waiting period before results come.
    Since my symptoms are currently all neurological, like MS (though I've had a history of joint pain, fibromyalgia type symptoms, rashes, lymph nodes, headaches, etc dating back to when I was thirteen...) what should I be looking for if I have a herx? I see people describe flu-like symptoms, but does that happen with neurologic lyme? I'm asking because I've been on some homeopathic treatment while I'm awaiting my blood work results and some days I feel better, other days I feel much worse. The homeopathic doctor said I should expect my neuro symptoms to get worse first, but for how long, and is it normal to have a few days of feeling better and a few days of feeling much worse? I just wanted to hear from other folks experience. Even with antibiotics-(which I'm not on yet) what happens with neuro-lyme? Thanks!

    Last edited by SuzU; 02-09-2005 at 05:10 AM.

     
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    Old 02-09-2005, 06:55 AM   #2
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    Re: Possible Neuroborreliosis-what would the herx feel like?

    Hi SuzU, welcome to the board!

    Many people who have Lyme were first diagnosed with other diseases, including MS. From what I understand, a spinal tap is not an effecteive test for Lyme because it shows up in less than 5% of cases. No test for Lyme is completely reliable. The ELISA, or titer, is the least reliable of all and the one most doctors run first.

    When Lyme is a possibility, it is very important to see a knowlegeable doctor. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlcihiosis (HME & HGE), Bartonella, and Mycoplamsa. Many people who have Lyme are co-infected. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. I am glad you are seeing Dr. E, she comes highly recommended.

    I know it is hard waiting for results. Going through treatment can be difficult, especially if you have been sick for some time. You must focus on the end result of getting better. It is normal to feel worse before feeling better. Herxes vary individually because the disease affects everyone differently. Symptoms usually get worse during the herx and you may get new ones. It is important to document your symptoms daily. One way is to list the top three you are having each day and give them a numerical rating from 1-10. Then over time, you can pinpoint when the herxes occur and how you are responding to the medications. Many people experience a herx approximately every four weeks or so.

    It is also normal to have symptoms flucutate in severity and location and to have good days then bad ones. It can make you crazy, but it helps to know it is normal.

    Hang in there okay? You are on your way to better days and you are definitely not alone. Keep us posted on your results.

    Last edited by ticker; 02-09-2005 at 07:07 AM.

     
    Old 02-09-2005, 07:54 AM   #3
    SuzU
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    Re: Possible Neuroborreliosis-what would the herx feel like?

    Thanks, Ticker.
    I see your name a lot-I feel like I'm talking to a regular celebrity!
    Yup, the waiting is the worst part, especially with this body crumbling all around me.
    Those folks that were dx'd with MS first-do they still have MS, or were they found to have Lyme instead, and if so, has the treatment been effective over the long term? MS is so unpredictable and can go into remission for long periods, so pardon my skepticism but I would wonder if it is a response to Lyme treatment or just a remission.
    Blessings to you.

     
    Old 02-09-2005, 08:05 AM   #4
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    Re: Possible Neuroborreliosis-what would the herx feel like?

    Good luck Suzu. Ticker is our own celebrity!! Very famous and loved around here. Very reculsive tho, do not know whether ticker is male or female, don't know how he/she knows so many docs, don't know what he /she looks like or how old. OH!! So I guess Ticker is one of those mysterious celebs!! Keep wating to see his /her picture in a tabloid--- he/she is so sought after for those photos on the cover!!! OK, ok, so I am kidding. We cannot share any of that info here--but ticker is our very own celeb and we wouldn't have it any other way!!! Just think if ticker could tell us where he/she lived, my God!!! That poor person would NEVER get any peace. I guess the rules are a good thing for folks like our beloved ticker. See ya!!

     
    Old 02-09-2005, 08:27 AM   #5
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    Re: Possible Neuroborreliosis-what would the herx feel like?

    Hi SuzU, sorry you're so sick, welcome to the board.

    When I herx my neurological problems are worse, especially my first herx. I could not think at all, couldn't look at the computer screen or understand written words, couldn't find my parents house in my own hometown. I could barely talk because I didn't remember common words.

    Things are better now. I hope you get better too, keep us updated.

     
    Old 02-09-2005, 09:19 AM   #6
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    Re: Possible Neuroborreliosis-what would the herx feel like?

    Shoot, Laurie... I've been to Ticker's place - great hacienda, right Ticker?
    (just gotta use a little imagination - I'll look for ya at the next Ticker bash - we'll have it at her place, OK?)... I've (cj) wn hair with a few gray streaks, green eyes...
    cj

     
    Old 02-09-2005, 12:12 PM   #7
    outinthe_woods
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    Thumbs up Re: Possible Neuroborreliosis-what would the herx feel like?

    Hello, SuzU:

    I have neurologic Lyme (confirmed by spinal tap = for the conventional doctors out there - lol) and my experience started with loss of memory, leading to job loss, inability to drive or speak coherent sentences, balance problems, etc etc.and the physical joint and muscle pain, foot and hand burning, blurred vision, (check out Ticker's list of symptoms on this board - it's great and I've had almost every one of them!) The first neurologist (after a neg. MRI and positive SPECT scan) wanted me to start Aricept for Alzheimer's..the second said it was depression .. the third I haven't heard from after another MRI...she/her office are not good about communication or returning phone calls. I had extreme inability to concentrate or retain what I had "read" (which was only a sentence or two at a time) illegible handwriting.
    I (through another patient) eventually found an LLMD and after years of treatment, (I had 3 abnormal bands) I can finally "function". A doctor who listens to his patient's symptoms is a true blessing, because we become our own greatest diagnosticians.

     
    Old 02-09-2005, 02:00 PM   #8
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    Re: Possible Neuroborreliosis-what would the herx feel like?

    Dear SuzU,
    I have neurological Lyme and know what you are talking about. You can pull up my first thread and see all I went through to get to this point. I not only had a neurologist tell me I had MS but then an MS specialist. After you read my story you will see how glad I am that I didn't go on MS meds. After being on an IV of Rocephin my liver went crazy and I am now on Doxy. When I was off the meds for 3 weeks I felt I really regressed - equilibrium, insomnia, hair falling out, leg twitching. All the old things that bothered me before Rocephin came back. Hopefully the Doxy I'm on now will kick in soon and start me back on the right track. As Ticker said all herxes are different for each individual. I had read about so many bad ones that when I finally herxed it didn't seem so bad. I may have to eat my words with a Doxy herx but that's okay. At least it will be a herx. I look forward to one that makes me feel like I'm herxing then I will no for sure it happened. My symptoms have never gone away in over 4 years so I knew it wasn't MS plus I'm 57 and a little too old to be getting MS. Hang in there and I hope your tests come back with some kind of answer for you so you can start to get better.
    Again pull up my first thread by keying in my name and see if our symptoms are alike. Good Luck and follow your gut instinct.
    betterdaysforme

     
    Old 02-09-2005, 02:31 PM   #9
    SuzU
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    Re: Possible Neuroborreliosis-what would the herx feel like?

    Thanks everyone for your responses. You guys are the best. It is so comforting to know I'm not the only one who has been called a nut job by multiple medical professionals, lol.
    Betterdays-I've been following your case. I think the difference between us is that I have symptoms, but can't get anyone to dx me, because everything has come out negative. (I'm not complaining-I'd rather NOT have MS than have it-but everyone at least acknowledges that I have EVERY stinkin symptom of it, and no one bothers to offer me any treatment because they can't see proof of anything clinically. Very depressing and frustrating.)
    I have the whole nine-weakness, TREMORS that I hate the most right now, I can barely type this. Inability to type, feed myself, buttons and bottle caps are tough for me. My legs and arms shake whenever I bend or move. Sometimes I feel like a bobble head doll because even my neck, lips, and jaw tremor. Aside from that are the bladder problems, eye movements, etc. Aside from total paralysis (I'm relieved to say) I've had every symptom of MS known to man, woman or beast.
    So I'll be anxious to see what my blood work says, because at least that will give me a starting point.
    Thanks for letting me rant and for being so kind.
    Blessings.

     
    Old 02-09-2005, 08:07 PM   #10
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    Re: Possible Neuroborreliosis-what would the herx feel like?

    Hi SuzU. Wow, I have never been called a celebrity before!

    I do not know a lot about MS, but isn't it difficult to diagnose like Lyme disease is? I can understand your skepticism. It is scary when testing is not definite. Have you seen a highly recommended MS doctor? I suggest seeing experts in both fields and following your instincts. See what the Lyme doctor thinks when you get your results back. There is a Lyme doctor in Ridgefield, CT who I believe has done quite a bit of research on a Lyme disease/MS connection.

    Try doing a search of "Lyme Disease and Multiple Sclerosis." You may find some information.

    Last edited by ticker; 02-09-2005 at 08:08 PM.

     
    Old 02-09-2005, 08:32 PM   #11
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    Re: Possible Neuroborreliosis-what would the herx feel like?

    Laurie you are cracking me up!!!

    Thanks for the celebrity status--it is definitely new to me! Keep your eyes out for The Enquirer. I have given them an exclusive. I will be the one on the cover who is about to be trampled by a Godzilla-sized tick. The CDC buidling is in the background and it is completely shut down. As the gargantuan tick looms above me, I cower in the dark shadow of its engorged being while I ponder methods of extermination. With one shrill whistle, I summon my brigade of guinia hens who hungrily devour the arachnid. The world is saved!

    Thank you so much for your wonderfully kind words, they mean a lot!

     
    Old 02-09-2005, 08:45 PM   #12
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    Re: Possible Neuroborreliosis-what would the herx feel like?

    Hey cj--come on over!! We will out-do ourselves again!

     
    Old 02-10-2005, 05:51 AM   #13
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    Re: Possible Neuroborreliosis-what would the herx feel like?

    Usually when I write LOL--I am laughing on the inside, really. THIS time I was cracking up out loud! Especially about the CDC being shut down in the backround! Knowledgable, funny and a great imagination! Who but a celebrity could have it all?

     
    Old 02-10-2005, 07:02 AM   #14
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    Re: Possible Neuroborreliosis-what would the herx feel like?

    Ditto!! Giant dead tick at the doorsteps of a defunct CDC... Ticker, come on, tell us your REAL name. ghostwriter ticker...
    too fun!!

     
    Old 02-10-2005, 03:55 PM   #15
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    Re: Possible Neuroborreliosis-what would the herx feel like?

    I am glad you guys like the scenario! Thanks for the compliments.

    CJ, if I told you my name, the looney catchers would hunt me down!!!

     
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