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    Old 12-06-2004, 03:03 PM   #1
    CFD 333
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    Well, I went to the doctor

    As the title says, I went to the Tick Borne Illness Center in Chadds Ford, PA. To give you a little history into my illness, I've been sick since September, 2003 and have since then been diagnosed with Lyme Disease via Western Blot/Elisa. My syptoms were and still are mostly neurological (fatigue, panic attacks, constant anxiety, brain fog). I was probably undertreated in the past with 1gm IV Rocephin for 6 weeks and Doxycyline 200mg twice daily for 6 weeks after that. I responded only slightly but then relapse a few months later (don't know if it was coincidence or not). I figured I would go see Dr. Schuchman since i've heard some things about him from other forums. He explained to me that the IV Rocephin dose was half what it should have been and that he doesn't believe the doxycycline would help me at all at this point. Of course, he wants to make sure that I actually still have Lyme Disease bacteria or any other possible co-infections. He is doing the PCR test on blood and urine to try and detect the actual presence of Borrelia B. and that he won't treat me until I get a positive test. His reasoning was, if the organism is there, eventually it will show up. If it doesn't, then he believes that instead of throwing antibiotics at the problem we must do something else.

    After the visit, I must say that I'm conflicted. Should I put all my trust into this one test? I'd have to say no, obviously, since I know none of the tests can be completely reliable. Of course, a year ago if the Western Blot/Elisa tests didn't show positive, I would have never even considered Lyme disease ever again! So this leaves me wondering now. We discussed that there are several cases where after appropriate treatments, there have been times where patients symptoms did not resolve until years later, but they did so without further antibiotic use. So what gives? What is actually going on? Well, he informed me that certain immunological processes may have been set in action by the bacteria that don't go away just because it has been eradicated. This being coined "post-Lyme syndrome", which may exist or may not, no one really knows, but is really the immune system gone 'haywire'. I had a friend who was treated for a year with only oral antibiotics and it still took her an additional 3-4 years without anymore medications before all her symptoms resolved...but they did in fact resolve completely and she was much more sick than I am! So what happened with her? Did she really need all the medicine or did she in fact have a syndrome that just needed to resolve on its own? Makes you wonder doesn't it? I'm getting to the point where I would rather just see a Chronic Fatigue doctor than a Lyme disease doctor. At least they can help manage my symptoms for now until they eventually disappear on there own. Am I wrong for thinking this way? Is this just frustration talking? Who knows...all I know is one day I was just fine and the next I wasn't and haven't been since. You know, I just can't shake the feeling that more Rocephin may damage my body further...i know this is possible. Why take the risks and what if the insurance company battles me on this? Why not just use oral medications? What's the big deal? If you don't even know if I truely have Lyme disease, why should I take such risks?

    Last edited by Administrator; 02-27-2012 at 07:32 AM.

     
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    Old 02-23-2005, 11:44 AM   #2
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    re: Well, I went to the doctor

    I want to update what has happened with this post. I only returned to Dr. Schuchman's office one time after my initial visit and never returned again. I was very displeased with this gentleman. If you read my above post, you will note that on my first visit he was intent of finding Lyme DNA in my blood or urine through PCR testing and was going to keep doing it every 2 weeks until they showed up positive.

    I go back a second time about 2 weeks later to get the results and he tells me he hasn't received them yet! "Why didn't anyone call me and tell me not to come in?", I ask. He said, "Well, with your symptoms I would definitely say that you have Lyme Disease." Without ever getting the results of such expensive tests he tells me we should go ahead and put me on IV Rocephin! He totally abandoned his previous protocol and just decided to go with it!

    Come to find out, he has his own little IV Rocephin infusion room and I would have to go there everyday for the first week and then every other day after that to get them done! I couldn't believe my eyes and ears...so I told him, "There's just no way I'm coming back here every day for infusions. There is no need for that." I explained to him that I was on Rocephin for six weeks in the past through home infusion and it didn't work for me, but the process worked wonderfully. I had a nurse come to my house to install it and she came once a week to change and clean it...that's it...that's all you need. So I asked him, "If I wanted to try the Rocephin again, could I do it through home infusion?" His answer to this was classic, "Well....if you want to go through home infusion, I don't deal with them....I do the infusion here so I can keep an eye of them...If you want to do home infusion, you're going to have to get your family doctor to do it...I don't do that." WHAT?! ARE YOU KIDDING ME?! I was shocked!

    That was it for me! At this point I realized that this guy was a crook! He's selling Rocephin like candy and making quite a fortune doing it! Unbelievable. And that's not even the end of the story...It took me another month and a half, 4 phone calls, and a signed letter to finally get those damn lab results faxed to my doctor. When I got them everything except the ELISA/Western Blot came up negative anyway. Even better, after they told me my insurance company would cover the cost of these lab tests, guess what? They didn't. I have to pay out of pocket for them now which will cost me around $350!

    I was really close to calling my insurance company and claiming fraud...for a the longest time I doubted whether he ever even did the lab work and just charged my insurance company for it, but now I have the actual report from the lab, so I guess he really did them. Of course, those records could have been faked, but I have no proof of that....yet. I'm thinking of writing them a letter threatening them to drop the bill or I will run to the newspapers and report them to the Board because of questionable practices, but I need to consult a lawyer on that first.

    Long story short, avoid this doctor at all costs.

    Last edited by Administrator; 02-27-2012 at 07:34 AM.

     
    Old 02-23-2005, 12:51 PM   #3
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    re: Well, I went to the doctor

    Dear lamotta,

    Just like you I was on the Rocephin IV for a total of 9 weeks and 1 day and then my liver enzymes went crazy. The infectious disease doctor said no more because he didn't want to exchange an even worse problem for the one I already had. He had me sit out 3 weeks with no meds and I am now on Doxy 100mg 2x day. Probably not enough but a start. I felt I was responding to the IV for the smaller symptoms but as his pharmacist said the Rocephin is to kill the bacterial infection not get rid of the smaller symptoms. So we felt we were on the right track. If it was doing its job then the symptoms would go away, which some of them were. He also had an infusion room but I only had to go once a week to get the bandage changed and do blood work. His staff taught me what to do and as you know it was quite simple. I'm concerned that your doctor felt like you had to go to him on a daily basis.

    I have seen a few advances since the start of the Doxy but wonder if it would be more if the dose was increased? My doctor's staff told me that he would continue to treat as long as I was making progress. The only problem is that he and the pharmacist feel that sooner or later the dose they have given me will work. I think they err on the side of safety. Not real sure yet! I was targeting for at least 3 months on the IV but will have to now go with the next best thing and hope it will finish the job the Rocephin started.

    About the length of time to get rid of the symptoms I have to tell you this. One day when I was at the doctor's office his pharmacist got out a new book (huge one) that he had requested one of his reps buy him. I don't know if it was the AMA journal or what, but if not I'm sure something similar. The pharmacist read the Lyme info to me and was quite intrigued with some of the info herself. It stated that you can have the symptoms for a year or more until your immune system kicks in and takes over and gets rid of the lyme. This is a recent publication and I don't know what they are basing it on but I'm sure his office believes it. I wish I could but am afraid to even test the waters. Our biggest problem is that the CDC and a lot of doctors are just not up to date. To believe or not, who knows!. I will continue with the Doxy for as long as he lets me and hope the symptoms at least decrease and I see a light at the end of the tunnel. The question is am I taking a baby aspirin dose for a migraine so to speak? I'm not sure anyone knows.

    I wish you luck and like me I know you are following some of the promising "stars" on the boards and hope for direction to a cure. I just want to be "me" again, nothing special just "me". Please keep us posted on your journey as I will you on mine.

    betterdaysforme

     
    Old 02-23-2005, 01:04 PM   #4
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    re: Well, I went to the doctor

    Hello lamaotta,

    First of all, may I say, that I always find your postings very interesting and challenging.

    It is my understanding that there is no test that is commercially available to prove that you have Lyme or that it has been cured.

    So, is your argument because there is no reliable test that you will not seek treatment for Lyme, until the little buggers make you cry “Uncle”?

    Tks for sharing

     
    Old 02-24-2005, 08:53 AM   #5
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    re: Well, I went to the doctor

    Lamotta,

    SO sorry for your experience! I think it is a travesty for anyone to be taken in any setting. Add the medical community and it becomes heightened all the more. Add to that, someone with an illness with no known cure, and it is unforgiveable in human terms. And no, you should not have to pay a red cent for your time with this place.

    Hope you can move forward soon with clarity as to your treatment. Try and not let the fact that all do not have your best interests at heart get in the way. Just learn, and move on, stronger and wiser. cj

     
    Old 02-24-2005, 11:09 AM   #6
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    re: Well, I went to the doctor

    It is unfortunate that doctors like these exist and that they in turn indirectly give the good LLMDs a bad name. I am sorry you had to experience this and I would report him if I were you...Take care...

     
    Old 11-16-2007, 10:56 AM   #7
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    re: Well, I went to the doctor

    when i came to dr scuchman i was a wreck.
    memory loss
    general neuropathy
    fatique
    anxiety
    hearing loss
    bal blah

    after 3 months of rocephin and azithro
    i have noticed significant change.
    my friends even comment on how i have become a different person.

    this guy was so helpful (even giving his home number in case of emergency


    i am sure every one rubs every one the wrong way, but this guy has done nothing but good for my life.

    honestly!

     
    Old 11-16-2007, 02:05 PM   #8
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    re: Well, I went to the doctor

    I also was treated by this doctor - After he drains every cent he can from your insurance (and I got a nice bill too), your done, well or not, he can care less. I was far from well at the end of treatment and I didn't get better after treatment like he wants you to believe. He told me (life's not fair with this disease). Only thing fair to him is how much money he can make off of you and your insurance.

     
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