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  • I May Have Lyme - Insight Appreciated!

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    Old 04-12-2008, 08:42 AM   #1
    jwick25
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    I May Have Lyme - Insight Appreciated!

    Hello,

    I am new to these boards and am hoping to gain insight on my current situation. Here is the background (I apologize if this post is too long):

    In May 2007, I was on a cruise with my husband and wound up with a bullseye rash on my arm. Upon returning home, I had a doctor's appt., so I took my digital camera that had a picture of the rash (arm had already healed). Doctor advised that there was no reason to test for Lyme because I had no physical symptoms.

    A few weeks ago, I started to feel sick with flu-like symptoms. My first day out of work was March 17th. I have not yet returned. I was experiencing shaking (mostly at night), diarrhea, major lightheadness, chills, extreme fatigue, weakness, etc. I spent 4 nights in the hospital. The doctor believed that I had a nasty viral infection but ran many tests to rule out other problems. Since being released, I have had some days that are not too bad and others that make me feel I am trapped in a nightmare. Symptoms include: Stiff neck, bone pain (legs), heavy limbs, shaking, weakness, extreme fatigue, trouble falling asleep, motion sickness (when reading or watching tv), weight loss, loss of appetite, blurry vision at times, memory loss (short term), difficulty concentrating, headaches and unexplained menstrual pain.

    A couple of days ago, I had a follow up with my doctor. I took some printed information on Lyme Disease with me and discussed it with her. I also brought the picture of my rash from last year. I was sent to the blood lab to be tested to Lyme, Ehrlichia and Q-fever, as well as a few other general tests. I am actually hoping that I test positive for Lyme Disease, as it is treatable, and I will finally have a concrete answer as to what has been affecting me.

    After reading several messages on these boards, I am concerned about test accuracy, proper diagnosis and treatment. I have begun the search for an LLMD (Philly and surrounding areas) so that I can plan my next steps once my results are in.

    I am growing more frustrated and scared by the day, as I feel I am in a race against the clock to figure out what is making me so sick. The thought of an undetected problem affecting me while no one is able to diagnose me is horrifying. I would greatly appreciate any insight that could be offered, as I know little about this disease and its treatment.

    Thank you for taking the time to read my message. I appreciate it!

    jwick25

     
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    Old 04-12-2008, 09:53 AM   #2
    darion4
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    Re: I May Have Lyme - Insight Appreciated!

    Hi,

    I really feel for you. I've experienced all of the symptoms you describe. I was bitten by something in the Caribbean 13 years ago that gave me scary looking dark, spreading rash. A few months later I got sick with a horrible flu and back ache, and since that point I've had symptoms ranging from numbness in my arms and legs to vision problems and everything in between. I've seen almost 20 specialists in the ensuing years and was tested for everything from MS to brain tumors to chronic fatigue syndrome. Over and over again I was told, "you're fine... your tests are normal..." I've had months and even a couple years at one point where I've been symptom free, but sooner or later it all comes back, and these past 2 years have been the worst. I'm only in my 30's but have lower energy levels than some 80 year olds! I also have chronic dizziness/light-headedness, which makes going about my daily routine very challenging. Ironically, it was my optometrist who suggested it could be Lyme Disease, and that led me to travelling 1200 Km to see a doctor who specialized in Lyme. Long story short, I'm now in the process of getting some treatment, although I'm sure it will be a l-o-n-g haul since I've had this for so many years. My advice would be don't wait. Fight to get in to see someone who will take this seriously because if it is Lyme, the sooner you get treated the better off you'll be. Please keep us updated!

    kd

     
    Old 04-12-2008, 02:14 PM   #3
    jwick25
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    Re: I May Have Lyme - Insight Appreciated!

    Quote:
    Originally Posted by ticker View Post
    Hi jwick25, welcome to the board!

    I am sorry you have been so sick. From what I understand, a bulls-eye rash is a definite sign of Lyme. The rash alone merits treatment. It is great that you took a photo of your rash.

    Do you ever have night sweats, shortness of breath, and/or heart palpitations?

    If you need a doctor recommendation, let us know. I believe you may be closer to the NJ Lyme doctors. I know of two in Jackson and West Caldwell. There is one in Howell who is supposed to be knowledgeable, but I don't know if he is.

    I hope you can get answers soon.
    Hello Ticker,

    Thanks so much for the reply. I have experienced night sweats, shortness of breath and, possibly, heart palpitations. My doctor thought a murmur might have been heard. Initially, I could not sleep at all. For the past couple of weeks, falling asleep is the challenge. Once asleep, I do sleep through the night...for the most part. However, no matter how fatigued I am, I will lay in bed for up to 2 hours before being able to fall asleep.

    Thank you, also, for the other information you provided. I actually called a Dr. E in Jackson, NJ today. They put me down for an early May appointment. In the meantime, I plan to contact local hospitals to ask about Lyme specialists. I am hoping to find someone in the Philly, Abington, Doylestown, Newtown, PA area. Although my test results have not yet come back, I'd like to meet with a specialist regardless of the results.

    I'll keep you posted!
    jwick25

     
    Old 04-12-2008, 02:20 PM   #4
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    Re: I May Have Lyme - Insight Appreciated!

    Thanks for the response. I can't imagine what you, and so many others, must have gone through (and are still going through)...dealing with this for such a long time. It is such a shame that there is not a better awareness about Lyme, as seems to be the case. The worst is when a doctor looks at you as if you must be imagining things. So many tests were run on me, and they all came back negative so far. I'm happy about that, but desperately want to know what the problem is. My most recent symptoms include upper leg aches and intense pain during menstrual cycle. I would think that the Philadelphia area should have its share of specialists as this is a common area for ticks/Lyme. I hope to find a reputable Lyme specialist and get in for an appointment asap.


    I wish you all the best!
    jwick25

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    Old 04-12-2008, 02:52 PM   #5
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    Re: I May Have Lyme - Insight Appreciated!

    Hi jwick25. Dr. E. comes highly recommended. Usually hospitals and large medical clinics are not the best place to go for tick-borne illnesses.

    I asked about night sweats, shortness of breath, and heart palpitations because they are hallmark symptoms of the co-infection Babesiosis. It is similar to malaria.

    Sleep problems can be Lyme and hormone related.

    Good luck! Do keep us posted.

     
    Old 04-13-2008, 02:08 PM   #6
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    Re: I May Have Lyme - Insight Appreciated!

    Hi,
    I read your post, and thought I'd add my 2 cents-- First of all--you found this board, which is a great resource..search all things Lyme related in old posts..ask questions, use all the knowledge that is accumulated here, or just vent !! I am waiting for blood results from Dr Raxlen in NYC---I got his name here, after reading all the raves about him. There are people from further away than Philly, that travel to see him---so maybe it's an option for you...Whoever you use, make sure they use Igenex labs for the blood work--they seem to be one of 2 or 3 labs that get accurate results.
    I wish you all the luck........Hope you are feeling better.............Doug

     
    Old 04-13-2008, 03:44 PM   #7
    jwick25
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    Re: I May Have Lyme - Insight Appreciated!

    Quote:
    Originally Posted by Braveheart07 View Post
    Hi,
    I read your post, and thought I'd add my 2 cents-- First of all--you found this board, which is a great resource..search all things Lyme related in old posts..ask questions, use all the knowledge that is accumulated here, or just vent !! I am waiting for blood results .....Doug
    Hi Doug,

    Thanks for your message! These boards certainly do seem to offer a wealth of information. Like you, I am anxiously awaiting my results. I would definitely be willing to travel to NYC to see a wonderful doctor, so thank you for the information.

    Earlier today, my mom told me about a local doctor who treated the daughter of a close friend several years ago. While not an official LLMD (are any official, or is LLMD simply a term used to describe those who have an awareness?), I've heard wonderful things about him. After examining the friend's daughter, his first instinct was that she most likely had Lyme. He sent her blood work to 2 labs...one local and the other in NY. All results came back positive. She was treated and fully recovered. The doctor's awareness of Lyme and the actions he took make me feel that using him may be an option. I will still meet with an LLMD, but it's nice to know of another option close to home...just in case.

    I hope everything goes well for you and you are feeling good as soon as possible!

    Best of luck!
    jwick25

     
    Old 04-14-2008, 08:28 AM   #8
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    Re: I May Have Lyme - Insight Appreciated!

    Hi jwick
    I became sick last spring and was under the care of neurologists, infectious disease dr and my regular md. To make a long story short after a round of rocephrin last spring I am now experiencing symptoms again and it is scarey because I dont want to get as sick as I was last year. I am waiting for blood test results because the blood work I had done at Quest lab here is %98 wrong according to my doctor even though it was positive for lyme he thinks I may have a co infection. Try and find a lldr near you or consider traveling to NJ. or get your blood checked out by Ingenex. Good Luck !
    Barb

    Last edited by Administrator; 03-11-2018 at 04:52 PM.

     
    Old 04-14-2008, 04:04 PM   #9
    jwick25
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    Re: I May Have Lyme - Insight Appreciated!

    Thank you, Barb!

    I do have another question:

    I was given a few names of doctors who specialize in Lyme. Some are Infectious Disease doctors, others are Rheumatologists. Does it make a difference who I visit? I've heard that IDs have a reputation of not taking Lyme seriously. Am I better off with a Rheumatologist?

     
    Old 04-14-2008, 05:12 PM   #10
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    Re: I May Have Lyme - Insight Appreciated!

    Hi jwick25. I recommend seeing a Lyme doctor who has been recommended by a Lyme patient, Lyme support group, or reputable Lyme organization. Who recommended these doctors?

    Often infectious disease doctors and/or rheumatologists are not the best to see for Lyme unless they specialize it treating it.

     
    Old 04-15-2008, 09:31 AM   #11
    jwick25
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    Re: I May Have Lyme - Insight Appreciated!

    Quote:
    Originally Posted by ticker View Post
    Hi jwick25. I recommend seeing a Lyme doctor who has been recommended by a Lyme patient, Lyme support group, or reputable Lyme organization. Who recommended these doctors?

    Often infectious disease doctors and/or rheumatologists are not the best to see for Lyme unless they specialize it treating it.
    Hi Ticker,

    So then, is seeing a reputable MD (internist/family practice/primary care doc) who is known to have an awareness of Lyme a good thing? I kept thinking that I had to see a "specialist" of some sort, but now I think that may not be the case. There is a local MD who diagnosed/treated someone I know (family friend). After one appointment, he strongly suspected Lyme. He had her blood work sent to a local lab AND a NY lab. Both came back positive.

    I was wondering if the term LLMD is simply how the community refers to Lyme aware doctors, or if this applies to doctors with some sort of additional training or certification. If it is simply a term used to describe a Lyme aware doctor, I'd feel much better seeing the MD I discussed above. Now that I think of it, many of the LLMD lists I've seen include family doctors/MDs.

    Could anyone clarify for me? I just want to make sure I'm heading in the right direction.

    Thanks again for the help. These boards are proving to be extremely helpful! Hopefully, I'll be able to offer some advice to others someday soon. )

    jwick25

     
    Old 04-15-2008, 10:45 AM   #12
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    Re: I May Have Lyme - Insight Appreciated!

    LLMD- Lyme Literate MD. So basically a doctor who has studied and treated Lyme, (and realizes that there is such thing as "chronic" lyme, and who will actually treat you long-term). My doctor is a general practitioner.. he is also happens to be an "LLMD" (there is no certification, per se.. but he is on the ILADS board). So no, you don't have to find a specialist, but you should be seeing somebody who knows and understands Lyme, and is willing to treat you- for as long as necessary.

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    Old 04-15-2008, 12:38 PM   #13
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    Re: I May Have Lyme - Insight Appreciated!

    Thanks for the clarification. This definitely helps. Still no test results, but it should be soon. I really appreciate the advice I've been offered because it is helping me to plan ahead accordingly. I so badly want to get treatment, regardless of what I have!

    Thank you!
    jwick25

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    Old 04-17-2008, 06:20 AM   #14
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    Re: I May Have Lyme - Insight Appreciated!

    Just an update. Wound up in ER last night. Results came back...mostly negative with 1 Lyme (is it titer?) indistinguishable. More blood was taken at the hospital, and when the results come back, the doctor will compare. I still want my bloodwork sent to NY. The ER doctor - shocker - was trying to chalk everthing up to anxiety. I could have strangled him. I have a Primary Care appointment today and am going to insist that he get me to someone who can help with this.

    jwick25

     
    Old 04-17-2008, 10:55 PM   #15
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    Re: I May Have Lyme - Insight Appreciated!

    This thing you hear people referring to as "lyme" is really a bacterium called Borellia, with Borrellia Burgdorferi (Bb) being perhaps the most common strain in the states so far. Those tests you've gotten are only sensitive to antibodies your immune system might have produced for Bb, but if you're very ill then it is very unlikely your immune system has produced any antibodies for it. This means you may well continue to test negative, until you have recovered somewhat.

    What you need to do for yourself right now: get plenty of sleep every night, drink plenty of water, avoid ALL caffeine, and refined sugar, and take some vitamins, and minerals. Try at least 800mg daily in divided doses of a good quality magnesium preparation. The mag should help you sleep better. (Bb rapidly depletes the mag from your body, and causes anxiety, tremor, heart palps and beat skips, twitching, and insomnia.) DO NOT take any multimineral preparations though. Take at least 8,000 milligrams a day in divided doses of calcium ascorbate (non-acidic Vitamin C) after meals. Take a good quality B-complex. And get plenty of sleep, and get plenty of sleep!

    Also, consider detox bath to help your body start clearing out some of the toxins from your lymph system. 3-4 cups of mag sulfate (Epson Salt) and 1 cup of sodium bicarb in a regular sized bathtub. If you've got one of those garden tubs, add more of the mag and bicarb. Water should be above your body temp, but not feel hot to you. You might have to add a little hot water during the bath to make sure the temp stays above 98 to keep your pores open. Exfoliate yourself entire body first with a firm, dry brush, shower, and then soak in your bath for 30-40 minutes. I've found that two days on, then two days off seems to work good for me. (total of about 4 detox baths weeky).

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