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    Old 12-12-2004, 11:16 PM   #1
    JPGuinness
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    Unhappy Desperately seeking help!!! Please read this long post, please

    I am in so much physical and mental distress, and I don’t know what options I have left for diagnosis/treatment. Somebody please give me some direction. I’ve posted on the headache board several times, but my problem is definitely more complicated than headaches alone. I would greatly, greatly appreciated it if someone could correlate any of these symptoms with Lyme Disease; or, moreover, any other disease/syndrome to which they have become more aware.

    I’ll describe everything chronologically

    1996 - I’m 16 y/o and I spent 9 days in the hospital for peri-carditis (inflammation of the sack that surround the heart). The doctors told me it is VERY RARE for a 16 y/o boy to develop this condition and it can usually be attributed to an atypical virus. After this occurrence I was basically healthy for the next 4 years; well, I did develop severe allergies and recurrent, persistent sinus disease (sinusitis).

    2000 – I start having horrible eye strain, “weird headaches” and a LOT of double vision and tracking problems with my eyes. The eye strain was way out of proportion to the computer work I was doing; the headaches were either low-grade perpetual pain and numbness all around my head (particularly on the left side) or they were severe headaches accompanied with a lot of dizziness (dizziness magnified my double vision and eye strain problems). I also became very depressed this year, which is pretty-much in direct contrast to my normal mood. I began seeing a psychiatrist, who diagnosed me with depression and suspected I have Panic Disorder as well – I am always a very high-strung, on-edge person. Ok, so, an Ophthalmologist determined that I lost binocular vision and my two eyes were no longer working in synchrony. I then had corrective surgery in August of 2000. Shortly following surgery, my strange headaches, dizziness and all-around un-wellness began to diminish. I was then fine until 2003.

    2003 - Severe headaches; all eye problems return; severe head pressure; pain in my jaw; strange, numbing/tingling feeling in my nose; peculiar pain in the corner of my left eye near the bridge of my nose; severe sinus disease. There symptoms persisted the whole year, despite other strange occurrences described below:

    Ok, in January, I was referred to an ENT and then it was discovered that I had severe sinus disease that was not responding to antibiotics and surgery was necessary, and, subsequently, performed. After surgery, the symptoms did not get better.

    During February I developed a fever of 103 F and it stayed at that temperature for a whole week. During this week, I could barely move my neck and had a horrible migraine as well as all the other aforementioned symptoms. At the end of this week, I developed chest pains that were very similar to the near-fatal peri-carditis I developed in 1996. I then went to the ER. Basically, they said flu-like and then discharged.
    March: same high fever as Feb.; same chest pain; same result.
    May: same high fever as March.; same chest pain; they performed Sinus CT scan and I had “Pan Sinusitis”, meaning all eight of my sinuses had dangerous air-fluid levels in them. So, I had immediate surgery, felt better and was basically symptom-free for three months.
    August; same high fever for a week; same chest pain; this time I had swollen lymph glands and a headache so bad I could literally not move a muscle of my body; also, my neck was so stiff I couldn’t move my chin down to my neck. I described to my GP, “…this is the worst pain I have ever experienced”. GP suspected meningitis and referred me to the ER, where they were to perform a Spinal Tap (lumbar puncture). While in the hospital, they discovered I had a return of the “Pan Sinusitis”, Tonsilitis and a dangerously high fever. More importantly, this time they confirmed I had once again developed peri-carditis (the same thing I had when I was 16). So, I stayed in the hospital for 10 days and, after returning home, felt better for the remainder of that year.

    2004 – No more fevers, no more chest pains. Headaches are worse and stranger than ever. I can’t see straight. I can’t interact normally in a social situation anymore b/c my eyes feel strained, I see double, and my eyes don’t want to fixate on anything. I am more depressed than ever. My sleep is all screwed-up.

    Following my last peri-carditis episode of 2003, I had several specialist looking for various disorders/diseases/syndrome(s) that could explain and perhaps provide an underlying cause to my problems. Rheumatologist, Immunologist, Nuerologist

    I had a test for Lyme Disease about 9 months ago. I thought the test was complete, but then I got a letter from the hospital saying, “…the test results for lyme disease were inconclusive” and, further, the letter said they need convalescent serum to complete the study. Well, I never thought to follow-up with that letter b/c I’ve been to every friggin’ doctor on the east coast for every disease/illness known to mankind and there was never an indication of any disease from any of those tests. So I figured I couldn’t have Lyme, b/c some other tests would have yielded an indication of this disease, right?

    Currently I am diagnosed with depression, atypical cyclic migraine headaches and atypical face pain. I still get horrible sinus infections and sinus congestion/inflammation seems to exacerbate all my other symptoms. I have taking a crap-ton of anti-migraine pills, including Depakote, Lamictal, Topamax, Verapamil, Midrin, Fiornel,…etc.

    So, what should I do? Just recently I discovered the symptoms of Lyme disease and it definitely sounds like a promising candidate. So should I call those people back and schedule some more blood work, in hope of diagnosing the Lyme Disease? If it is not Lyme, then what could it be??? Please – I am desperate for some direction here. I need these headaches and facial pain to go away. I want to be able to see straight, that is what I care about more than anything else. Not being able to use my eyes and having a lot of head and face pain is making my life miserable, as I can’t sleep, socialize or, more importantly, work. I’m a 25 y/o and I’m stuck in my parent’s house with no hope of getting out; and with no hope of being able to work any time soon. I am desperate. I’ve researched the internet from the beginning to the end. I’ve read every post from every hypochondriac from every message board from every health topic, and all the information seems arbitrary, inconclusive or otherwise irrelevant.

    I don’t want to go through another winter feeling this way and I don’t think I’m going to do it anymore. I’m at the very edge. I don’t know which doctors to see. I have yet to meet someone with my cluster of symptoms. I used to be a very outgoing, outspoken, extraverted, well-educated personable guy. Now, I am physically ill, depressed and lifeless.

    Thanks for reading

     
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    Old 12-12-2004, 11:31 PM   #2
    fotomom
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    Re: Desperately seeking help!!! Please read this long post, please

    Although I am not a "pro" about Lyme yet, I just wanted you to know I feel your pain and frustration... 17 months and I finally know what has been takening my life away from me... lyme disease.... I hope you find out what is the under lying problem and get better fast!

    This is a great group of people here and I am sure some one here will be able to point you in the right direction. From what I read sounds like some of your symptions could be Lyme.... its such a crazy disease!

     
    Old 12-13-2004, 12:10 AM   #3
    JPGuinness
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    Re: Desperately seeking help!!! Please read this long post, please

    Thanks for your response. Yes, this truly does seem like a good group of people on thie board. I really hope someone can point me in the right direction. I've been reading posts on this board for several years, using it kind-of like a research tool. But now I'm at a desperate place and I need to be more proactive about these undiagnosed problem I have.

    How were you diagnosed? Would it be to my benifit to see an infectious disease specialist (thats probably the only specialist I haven't seen)?

    Thanks,
    J.P.

     
    Old 12-13-2004, 05:29 AM   #4
    dealer1111
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    Re: Desperately seeking help!!! Please read this long post, please

    I am on Lyme expert - just someone living with it.

    Have you had collida pneumonia test?

    Ticker will post feedback here for more information.

    Please be patient and there is always hope if your fighting back.

     
    Old 12-13-2004, 05:57 AM   #5
    ncgirl88
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    Re: Desperately seeking help!!! Please read this long post, please

    Hi JP -

    I am sorry you are going through this. Welcome to the lyme board!

    I have to say that from what you write it seems there could be a strong possiblity that you may have lyme disease and/or tick borne coinfections. Ticker I am sure will be along and can give you more details about this.

    As far as seeing an Infectious Disease doctor - I would recommend instead that you find an LLMD (lyme literate M.D.) mine happens to be an infectious disease doctor as well. I had gone to an ID at Johns Hopkins but my tests all came back negative...when I went through IgeneX labs in CA suddenly my lyme test was positive as well as for two coinfections, Babesia and Ehrlichia.

    My eyes started to do that thing where they wouldn't track well, I had problems with my eyes adjusting to light as well as looking at computers or digital clock displays. The light stuff started a couple years ago.

    I had the symptoms of costochondritis which is inflammation of the ribs...I was having problems breathing and chest pain.

    I was having frequent infections too.

    Hang in there. Ticker will be along with more info. As well, he/she knows a lot about the LLMDs out there that are really good and he/she may be able to suggest one that is as close as possible to where you live.

    I will tell you JP - if your journey through getting a diagnosis is anything like my last 7 months you may go through moments of denial. Even if it seems like Lyme disease could be a strong possibility it will still be hard to believe even with positive results because the establishment is so entrenched that it is not that common and that it is the "disease of the month". I was tested twice through conventional labs and all my blood work came back negative. They say it is hard to test for the bacteria and you have to handle the blood properly. The fact that your test came back equivocal definitely requires that you pursue this.

    Do you remember having any really extreme reactions to any of the antibiotics you have taken for your sinus issues?

    Take care and I have a feeling you are on the right path now.

    -ncgirl88

     
    Old 12-13-2004, 06:13 AM   #6
    laurie864bla
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    Re: Desperately seeking help!!! Please read this long post, please

    Just wanted to add that Mark tested negative at Hopkins ID, Children's Natl Medical Center, Quest, LabCorp, and NIH in Bethesda, MD. He had to go to a LLMD for a DX and by then was very sick. No doctor believed that he had Lyme with every single symptom except the ones having to do with labido and menstruation--and he is 8!!! When everything else is ruled out, and sometimes when they aren't--(MS, fibromyalgia, chronic fatigue, RA)you must start to explore the real deal about Lyme. NOT what conventional medicine often tells you cannot be Lyme, or if you were treated for a month with ABX, that you are cured. NOT!! Good luck and keep coming here. Where do you live? Post that and Ticker will be able to give you the name of a LLMD to see hopefully near you. --L

     
    Old 12-13-2004, 08:02 AM   #7
    JPGuinness
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    Re: Desperately seeking help!!! Please read this long post, please

    Wow, you all are great! I'm about to go to work so I don't have time to post much. I live in McLean, VA, which is about 5 minutes from Washington, D.C.
    I really hope I'm going in the right direction now.
    Take care everyone,

    J.P.

     
    Old 12-13-2004, 08:47 AM   #8
    laurie864bla
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    Re: Desperately seeking help!!! Please read this long post, please

    Hi J.P.
    We live close to one another!! I could be mistaken, but I think the good doc around here in Singleton. I think he is in Lutherville, MD, and maybe in DC as well, or maybe that's another one. I think there are two around here. AAnd NO, not at Hopkins, Inova Fairfax, NIH, or Md University Medical Center!! If you can believe that! My son has been to 'em all, and every DX under the sunexcept for Lyme. Finally got him DX acurately, but it really sucked waiting so long and being made to feel like he or I were nuts most of the time. Mark sees Dr. Jones in CT b/c he specializes in pediatric cases. He is great and has helped us out with a lot so far. Our priest sees Singleton, if thats the right name. Really likes him a lot and she has had Lyme for many years and been very sick for a long time before seeing him. I understand he takes insurance which is HUGE in this Lyme game. Most do not b/c of the contraversy over long term ABX. Educate yourself, and come here for support. It's a great place and I would be in a rubber room without it. Let us know updates. --L

     
    Old 12-13-2004, 09:24 AM   #9
    fotomom
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    Re: Desperately seeking help!!! Please read this long post, please

    JP,

    Since my western blot test was postitive (just one panel though, and my elisa was positive in 2003) in the last 6 weeks I have seen my GP, A rehmatologist, my neurologist, 2 infectious disease Drs (one from UCLA) and an LLMD. 5 of the 6 agree that I might or I do have Lyme. 2 of the 6 were willing to treat. But one wanted a spinal tap to confirm that my symptions (bells palsy bi later, nerve damage in hands, FM, IC and so one...) were in deed Lyme.

    In the end I have decieded on the LLMD which my neurologist put it in good perspective..... He told me if this was his daughter going through this, he would only want her to see a lyme specialist not an ID Dr.... that helped me make my decision right away.

    I have only been on treatment for 9 days now. I mentally feel a little better, but I think its cause I now know I am getting the medical help that I need.

    I think if your pocket book could afford it, and you have lyme symptions I would skip the ID Dr and go to an LLMD.... the worse thing that can happen is that the LLMD says you don;t have it and you will be back to an ID Dr any ways to get further tests....

    Good luck!!

    Last edited by fotomom; 12-13-2004 at 09:26 AM.

     
    Old 12-13-2004, 01:58 PM   #10
    ticker
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    Re: Desperately seeking help!!! Please read this long post, please

    Hi JPGuinness, welcome to the board!

    I am sorry you have been sick for so long. I know how frustrating it is to be sick and not know why. Do not give up, you will find out what is wrong. Lyme disease and other tickborne diseases can cause the symptoms you describe. Lyme symptoms are known to wax/wane and migrate which you also describe.

    When Lyme is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and follow outdated treatment protocols. No test is completely reliable and a knowledgeale doctor will not rely soley on test results. Besides Lyme disease, ticks can transmit several co-infections, including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected and it is important to be tested for these by a Lyme reputable lab. Having a co-infection will affect treatment choice and progress. Some of your symptoms sound like they could be from Babesiosis.

    There is an excellent Lyme doctor in DC. His name is Dr. Kenneth Singleton. I am not sure if he is taking new patients. If he is not, I believe they can recommend someone knowledgeable.

    Hang in there okay? Keep us posted on your progress.

     
    Old 12-13-2004, 01:58 PM   #11
    JPGuinness
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    Re: Desperately seeking help!!! Please read this long post, please

    Ok, so all I have to do is find an LLMD. Does anyone know how I can do this? I will try to search for one myself later tonight, but if someone knows how to find one easily, please let me know.

    Laurie, you mentioned Dr. Singleton but you weren't sure if thats how it is spelled. I'm going to try and look that guy up also. Thanks.

    By the way, is a spinal tap (lumbar puncture) the definitive diagnosis for lyme disease, or can that test give false negatives just like the blood tests?

    Thanks for the help everybody. These boards really work well when we have a community of friendly people willing to help others. -J.P.

     
    Old 12-13-2004, 02:01 PM   #12
    ticker
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    Re: Desperately seeking help!!! Please read this long post, please

    Hi JPGuiness, I guess we were posting at the same time. I don't think you saw my previous post yet.

    Spinal taps show Lyme in less than 5% of cases. I have never heard of a Lyme doctor ordering a spinal tap to test for Lyme. No test is completely reliable and results can even vary by lab. A knowledgeable doctor will consider your entire history and will use a Lyme reputable lab for testing.

     
    Old 01-02-2005, 12:49 PM   #13
    bjkoch
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    Re: Desperately seeking help!!! Please read this long post, please

    This may be of interest. My friends mother (70+ years old) had been ill for a year and was no longer walking 2 doctors and 1 chiropractor told her she needed knee surgery. They were directed to a Naturopath (sp?) in the Twin Cities, MN, he finally diognosed her with Lymes Disease. You have had a much longer time going undiagnosed, so that could certainly be a factor. He put her on mega doses of Pharmaceutical grade supplements and within 3 days she was walking again and it has been approximately 1 year and she is without symptoms. It sounds like you need a specialist, someone that has been mentioned here, even if you have to travel to find the right one. All the best.

     
    Old 01-02-2005, 01:05 PM   #14
    dancergirl587
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    Re: Desperately seeking help!!! Please read this long post, please

    JP, I somehow managed to miss this thread and I just wanted to welcome you to the board and to say that we all understand your frustration. I also hate having to rely on other for everything, but I have hope that I and everybody else can overcome it. I hope you can get some answers very soon. God bless!

     
    Old 01-02-2005, 03:56 PM   #15
    Ozarka
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    Re: Desperately seeking help!!! Please read this long post, please

    JPGuiness,
    I too agree that lyme is a possibility. Have you also been checked for chronic strep infection ( a blood test/ and the lab does make a difference) or toxins such as lead and mercury in your body?
    Also, you can do some very advanced testing for allergies. A good naturopath (ND) or lyme doctor would probably be able to advice on labs.
    Though I certainly think lyme is possible, I wouldn't rule anything in or out, but would keep an open mind and keep searching.
    I hope you get to feeling better as well. All of the trial and error, though frustrating, will build a foundation for the correct diagnosis with the right doctor, naturopath etc.
    As you will find out in looking at these discussions, patients must, unfortunately, be their own advocates and put many of the pieces together of the puzzle.
    I hope you get to feeling better, encourage you to continue to post and question.
    Ozarka

     
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