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  • Lyme Disease? Symptoms for almost 4 years

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    Old 04-06-2005, 04:48 PM   #1
    vs1988
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    Lyme Disease? Symptoms for almost 4 years

    Hey all

    I'm a 16 year old male. I've been on Healthboards for a while now, couple of years actually, looking for answers to what might be going on with me. My symptoms started almost 4 years ago with tinnitus out of nowhere. Since then, new symptoms have shown up slowly. I'm going to try to list them all:

    tinnitus
    muscle twitches
    back/neck pain
    elbow/knee pain
    joints crack and pop
    tremors
    feeling tired
    weird rashes that come and go
    sensitivity to cold (shivering in warm weather)
    fingers turn purple in cold
    vibrating sensation that wakes me up as I'm about to fall asleep
    itching when hot
    muscle pain/soreness
    swollen lymph nodes
    tingling/numbness in face, hands, and feet
    heart palpitations
    sternum/rib pain
    TMJ

    I'm sure there are more, but that's all I can list off the top of my head as of now.

    Over the past year or two, I've been surfing Healthboards looking for info, and going to various doctors as well. I've seen an Ear/Nose/Throat Specialist, a cardiologist, a neurologist, and my regular MD several times with no dx.

    Tests I've had done:

    CBCs
    ESRs
    TSH/T4 Thyroid tests
    comprehensive metabolic panel
    MRI w/ contrast (for tinnitus)
    Hearing Test
    1 POSITIVE Lyme ELISA
    2 NEGATIVE Lyme WBs

    Can anyone offer any insight, input, or advice for me? I've been struggling with this for a while now, and I just want to get to the bottom of it. However, there are the issues of not being sure if this is indeed Lyme, finding an LLMD, being able to afford one, convincing my parents.

    EDIT: I live in the Northeast, where Lyme is big, and in previous summers I have gone hiking in the nature refuge behind my house in shorts and no tick spray. I also mow the lawn and areas close to the woods in shorts and sometimes no shirt. I never noticed a bullseye rash, but my first symptom (tinnitus) developed several weeks after a flu-like illness IIRC.

    Vince

    Last edited by vs1988; 04-06-2005 at 04:50 PM.

     
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    Old 04-06-2005, 04:57 PM   #2
    outinthe_woods
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    Re: Lyme Disease? Symptoms for almost 4 years

    Welcome to the Lyme Board, Vince.

    I just went over this with my LLMD on Monday.

    His bottom line (as is probably at least most of ours) is: If you can get your doc to give you AT LEAST 3 weeks of Doxy as a trial - you'll either have Herks and feel worse, or not have any reaction. That may help you to feel the questions are a bit more clarified.

    I'm herxing strongly right now and Brain Fog may confuse my statement to you, but I'm sure others will come along and help you! Hang in there!

     
    Old 04-06-2005, 05:00 PM   #3
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    Re: Lyme Disease? Symptoms for almost 4 years

    Hi vs1988, welcome to the board! I am sorry you have been sick for so long.

    You have had a positive Lyme test, a bullseye rash and yme symptoms--you need to be treated. The rash alone merits treatment. No Lyme test is completely reliable. Regarding the Western Blot test, the CDC requires a large number of bands to show for it to be positive, but many Lyme doctors focus on which bands show. Results can also vary by lab. Tests should be run by a Lyme reputable lab. Besides Lyme disease, ticks can transmit several co-infections. It is important to be tested for these also because many people who have Lyme are co-infected.

    I also suggest that you have a complete thyroid panel done. When was your thyroid tested previously? Request that in addition to the tests you had done, also get the Free T3, Free T4 (in addition to T3 and T4), and thyroid antibody tests. These are not usually run but are necessary for a complete view of your thyroid. Realize that even if your test results are in the normal range, they may not be optimal for you. When you get these tests done, post your results and I will try to help you interpret them. Sometimes people have Lyme and thyroid disorders.

    It is very important to see a Lyme knoweldgeable doctor. If you tell which state you are located in, I will tell you of the closest Lyme doctor to you that I know of.

    Are your parents aware of all of your symtpoms, the rash and the positive test?

     
    Old 04-06-2005, 05:06 PM   #4
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    Re: Lyme Disease? Symptoms for almost 4 years

    Hi gerribear. I don't think the trial med idea is a good one. Some people who have Lyme do not herx and some do not herx until the fourth week. If the doctor does not prescribe a high enough dose of antibiotics to treat Lyme, (which many do not) it may not occur.

    Also, if someone has a co-infection or if their strain of Lyme does not respond to the med they are taking, they may not have any reaction.

    I respectfully disagree with this theory, because there are too many variables involved for it to be so cut and dried.

    I hope you feel better soon

     
    Old 04-06-2005, 05:22 PM   #5
    vs1988
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    Re: Lyme Disease? Symptoms for almost 4 years

    Hey

    Thank you guys for your responses.

    Ticker, I did not have the bullseye rash. I still have the results of my Thyroid tests though. They are:

    TSH: 1.63 w/ range of 0.7-6.4
    T4 is 1.5 w/ range of 0.9-1.4.

    My parents know about my symptoms, but feel that it is "all in my head". I've seen so many doctors, and had so many tests done which were considered "normal" that my parents have concluded that I'm a hypochondriac. Whenever I talk about my worries and symptoms, they tend to get mad and tell me it's nothing. I talked a lot about this when I posted on the Thyroid boards for a while because I thought what I had was a thyroid problem.

    I am located in CT. However, I've already obtained a list of LLMDs from someone else from another website. I'd still like to hear what doctors you know that may be near me.

    Vince

     
    Old 04-06-2005, 05:34 PM   #6
    ticker
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    Re: Lyme Disease? Symptoms for almost 4 years

    Hi vs1988.

    When did you have the thyroid tests done? You really need to have the other thyroid tests done.

    Sorry about thinking you had the rash. Although a bullseye rash is a definite sign of Lyme, only about 50% of people who have Lyme ever get a rash.

    I am very sorry your parents are not supportive. You are not a hypochondriac. Ask your parents if they would read the book "Everything You Need To Know About Lyme Disease" by Karen Vanderhoof-Forschner. Lyme disease is the second fastest growing infectious disease in the US after AIDS. It is very prevalent.

    There are two doctors I know of in CT who come very highly recommended: Dr. Stephen Phillips in Ridgefield/Wilton and Dr. Charles Ray Jones in New Haven, CT. Dr. Jones is a Lyme pediatrician and is the best one in the country. I hope your parents will agree to let you see one of these doctors.

    Keep us posted okay?

    Last edited by ticker; 04-06-2005 at 05:37 PM.

     
    Old 04-06-2005, 05:47 PM   #7
    vs1988
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    Re: Lyme Disease? Symptoms for almost 4 years

    Hey Ticker

    I had the Thyroid tests done in June 2004 I believe.

    Thanks for the book suggestion. Unfortunately, I don't think my parents will read it. They are not very open-minded to new things, and I've tried showing them my own research I found on the internet before. They just told me to stop looking on the net and focus on school.

    The person I talked to on the other site also suggested Dr. Jones. There's a few problems with being able to see him. I'm not sure if my insurance will cover it, and right now we're saving for me to go to college, as well as paying a lot of stuff for my brother and sister. Second, I cannot convince my parents to let me see an LLMD because they are convinced I don't have Lyme. I think the best option I have is to convince my regular doctor with my research, and get him to get me a referral, or at least call Dr. Jones and consult with him over the phone. Would this be a good plan?

    Thank you

    Vince

     
    Old 04-06-2005, 06:48 PM   #8
    ticker
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    Re: Lyme Disease? Symptoms for almost 4 years

    Hi Vince. You should have the thyroid tests done again and include the ones mentioned. They could be much different now.

    Unfortunately, many Lyme doctors do not accept insurance because the insurance companies often do not reimburse them. People usually pay up front and then submit the bills for what the company will reimburse. You have a positive test and symptoms. You need to be treated. Your health is the most important thing. I know finances are difficult, but I really hope your parents will change their minds.

    Yes, I think it is a good idea to see if your doctor would consult with Dr. Jones. Sometimes though, doctors who do not understand Lyme think the treatment for it is extreme. Lyme requires much stronger treatment than many infections. I think a consult would be a great place to start.

    Keep us posted okay?

     
    Old 04-06-2005, 07:13 PM   #9
    vs1988
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    Re: Lyme Disease? Symptoms for almost 4 years

    Hey Ticker

    I think I'm definitely going to try to get my doctor to speak with Dr. Jones. The only problem is I have to wait until my physical in August to be able to do that. My parents won't take me to the doctor for what they believe is a non-existant problem.

    But when I do get to speak with my doctor, I'm not sure how I would word it to him. Should I print out all the stuff that I've looked up on Lyme? And I realize that Lyme might not be the problem, and other stuff has to be ruled out too. I will suggest the Thyroid panel that you talked about, would it be worth it to ask for an ANA as well to rule out autoimmune disorders? I'm not sure if my doctor would listen to my requests though, cause of my age and all, and the fact that I've seen him for these seperate symptoms so many times, and being told it wasn't anything to worry about.

    Vince

     
    Old 04-06-2005, 07:50 PM   #10
    ncgirl88
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    Re: Lyme Disease? Symptoms for almost 4 years

    You had a positive ELISA! So what did the doctor's say about that? Then two negative WBs - interesting....

    Did you go through IgeneX? That is what I would do if I were you. It might cost you unless you find an LLMD that accepts your insurance but IgeneX is the way to go.

    I tested negative through John's Hopkins though clinically the doctor felt I had it. I have/had Lyme, Ehrlichia, and Babesia.

    Quest even tested me for the coinfections.

    Got treatment - am improving...

    You are not crazy you are sick...I have been there - my Mom was the only one who really stood by me and didn't question my sanity.

    Keep on searching and don't give up. I didn't have a rash at all until I started meds...I had a little red dotted one on my legs but that was it.

    Take care and keep us posted Vince.

     
    Old 04-07-2005, 12:32 PM   #11
    vs1988
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    Re: Lyme Disease? Symptoms for almost 4 years

    Hey ncgirl88

    With the positive ELISA, the doctor said that "it wasn't a specific test" and that the "WB is accurate".

    I tested through Quest I think.

    I have an appointment with my regular doctor in two weeks for stomach problems that have not gone away. I think that might be a good time to bring up the subject of Lyme, though I'm not sure if he'll take it seriously if I do the "oh by the way..." thing.

    Vince

     
    Old 04-07-2005, 12:35 PM   #12
    ncgirl88
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    Re: Lyme Disease? Symptoms for almost 4 years

    Hey Vince - Very interesting - I swear to God - well not really God - How about I swear to Quest! What is the deal. Yeah, the Western Blot Quest did on me through John's Hopkins was so accurate that it didn't pick up the lyme that had been floating around awhile as well as all the myriad of coinfections I was tested for.

    Went through Igenex - Equivocal IgM - Positive IgG and Babesia and both hme and hge forms of Ehrlichia...so scary how these labs are useless when it comes to this stuff.

    Has to be a clinical diagnosis - Please find an LLMD fast. Some do take insurance...just be sure to ok the doctor with Ticker and the Board since there a few unscrupulous ones.

    Take care and don't give up

     
    Old 04-07-2005, 12:38 PM   #13
    ncgirl88
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    Re: Lyme Disease? Symptoms for almost 4 years

    Oh and about the stomach problems - I have had them from my throat to the other end - No fun! The only thing that has seemed to help the most for me so far is doxycycline - so what ever is attacking it most - probably the ehrlichia for me is being controlled by the doxy. When I am on doxy my stomach rarely hurts. Just something to consider.

    It is so hard once you start abx therapy because you think is my stomach hurting from the meds or from the bacteria - for me it was from the bacteria and I am so grateful that I figured out the doxy is the one that gets it otherwise I might have ramped down on the meds with doctor approval and then let the bacteria take over again....

    Anyway, the stomach issues go hand and hand with tick borne illness for many and most doctors don't understand this.

     
    Old 04-09-2005, 10:31 AM   #14
    vs1988
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    Re: Lyme Disease? Symptoms for almost 4 years

    Hey

    Thanks for your advice ncgirl88.

    A really weird thing just happened a few minutes ago, that really bothered me. My mom was on the phone with her friend, who had gotten bitten by a tick either yesterday or the day before. Her dr. has her on antibiotics as a preventative measure against Lyme. My mom was the one who told me all this information; so I thought maybe she was warming up to the idea of letting me get tested and see an LLMD. I was shot down completely. She told me "you were never bitten by a tick, you LOOK fine, and you're completely paranoid. Just because someone else has it doesn't mean you do. There is NOTHING wrong with you. Drop the discussion."

    I then asked her what about my symptoms for the past few years? She said "they're all in your head!"

    This really angered me. I know that I don't feel well at all. It's weird, because some of my symptoms cannot be seen (like tingling/pain), but even the ones that can be seen (even my doctor noted I have muscle tremors, which is why I was sent to a neurologist) she completely denies and says that I'm either "faking" the tremors, or they are "from stress".

    Even if I can convince my doctor to refer me to an LLMD/consult with an LLMD, and get me tested through Igenex or a reputable lab, my mom will still probably reject it, and since I'm a minor and she'd be the one to pay for it, that's what would happen.

    I'm sorry, but I just had to vent. This is really frustrating.

    Vince

     
    Old 04-09-2005, 12:54 PM   #15
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    Re: Lyme Disease? Symptoms for almost 4 years

    Vince, this is very upsetting. Many people who have Lyme, and other diseases too, look fine but it does not mean they are. You have every right to be angry and frustrated.

    Lyme disease is the second fastest growing infectious disease in the US after AIDS. It is very prevalent. CT has a huge number of cases.

    Do you have a teacher, guidance counselor, parent of a friend, or adult relative who you can confide in who may be able to help?

    Definitely do speak to your doctor candidly about what is going on. Remind him of the positive ELISA. Remind him of your symptoms. Tell him you would like to see a Lyme specialist to confirm or rule out tickborne illnesses. This is would be the best situation. If there is no way possible, see if he would consult with Dr. Jones.

    Hang in there okay?

    Last edited by ticker; 04-09-2005 at 01:00 PM.

     
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