I'm sorry you aren't having any success. I'm in a different position because I am just beginning my treatment, or attempt at it after 5 years of being sick.

My advice to you is to try another doctor. Different people connect better with different doctors, and just because a doctor has built a name with others does not mean that he is right for you. Especially if you are not having success with your health, that is reason enough to look elsewhere. That is his job, afterall, and if you find his credibility questionable, keep searching!

You don't need to cut ties. I wouldn't say anything nasty on your way out the door or anything--just thank him, and don't schedule any appointments until you try other avenues. That way, if you don't find someone better, you can come back to him.

Don't give up and don't EVER feel guilty for not connecting with a doctor just because he has a reputation.

Feel better and best of luck,

How about this one?
http://flash.lymenet.org/ubb/Forum3/HTML/004140.html http://www.drcharlescrist.com

HUGS,
Cheryl

It is a chronic disease, after all.

I am not well after a lot of treatment, but when I stop, I get worse. At this point, it seems like the situation that AIDS patients and diabetics are facing. The treatment doesn't cure, but prevents death in many cases.

Sorry about your situation. Maybe you should try elsewhere. Give both of you a break, make you feel like you are doing something, even if it doesn't work out. Worth a try.

There are people who get to the point of being without symptoms, but if you have had it a long time before you start treatment, getting cured is maybe not the right goal. Look for remission of symptoms, the longer the better.

You do realize that some doctors and their family members haven't been cured either? This is a wily germ and we need better treatments. If the NIH and CDC were doing their jobs, a lot more research would be funded, and we might have those better treatments. Instead of fighting so hard to get any treatment and having to prove we are still infected.

As an aside, this is only your second post in all that time of getting treatment? Seems like many people only come here to vent or get help and then disappear. It slants the discussion. And then when they get well, they disappear completely. This is understandable but we are missing that voice, which is one that needs to be heard.

[This message has been edited by lou (edited 09 December 2004).]

The answer was easy. We switched LLMDs. Just as in the non-lyme world, all doctors are not going to be the right ones for all patients.

I know it's suffocating being confined to a handful of doctors across the U.S. who are Lyme literate, but regardless, we need to do what we feel is best for ourselves. If that means switching LLMDs then that's perfectly okay. You need to do what you feel is right for you regardless of what the consequences may or may not be.

I ask that you please not imply I am only using this resource as a means to vent. It's true, I am a first time user, but with no agenda other then to obtain insight, information, compassion and understanding.

I simply didn't know the forum existed until last night.

Regards

quote:

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Originally posted by lou:
I think doctors who treat chronic diseases get just as frustrated as the patients when nothing seems to work.

It is a chronic disease, after all.

I am not well after a lot of treatment, but when I stop, I get worse. At this point, it seems like the situation that AIDS patients and diabetics are facing. The treatment doesn't cure, but prevents death in many cases.

Sorry about your situation. Maybe you should try elsewhere. Give both of you a break, make you feel like you are doing something, even if it doesn't work out. Worth a try.

There are people who get to the point of being without symptoms, but if you have had it a long time before you start treatment, getting cured is maybe not the right goal. Look for remission of symptoms, the longer the better.

You do realize that some doctors and their family members haven't been cured either? This is a wily germ and we need better treatments. If the NIH and CDC were doing their jobs, a lot more research would be funded, and we might have those better treatments. Instead of fighting so hard to get any treatment and having to prove we are still infected.

As an aside, this is only your second post in all that time of getting treatment? Seems like many people only come here to vent or get help and then disappear. It slants the discussion. And then when they get well, they disappear completely. This is understandable but we are missing that voice, which is one that needs to be heard.

[This message has been edited by lou (edited 09 December 2004).]

[This message has been edited by lou (edited 09 December 2004).]

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I wonder if it can be communicated about - outside a doctor/patient consultation?? Do you think you can have a chat (by phone) just about your concerns and how you feel (not physically) to his responses to you?

Do you write down what he says at each visit, so that at the next one when he contradicts himself, you can show the previous visits notes? Still, you don't want to pay to sit there and have an "argument" of he said, she said, etc.

But, also as someone said basically not all people get along very well, and perhaps you two are not a good match?

I don't know what to say and am discouraged to hear it - I think we share the same doc - unless you're speaking of another very famous doc. I cannot afford all the pharmaceutical grade supplements either, so I simply don't buy them, apart from sometimes some Cordymax or Reishimax, which I then take at the lowest dose on bottle.

He knows I don't have pots of money either and in my case has been pretty good about omitting tests which are not absolutely crucial, whereas otherwise he'd do them....and also given me options between drugs - more expensive or cheaper - BUT, I am in the early stages of treatment, only a few months in.

I do hope you can either "heal" the relationship and put it all straight and get over any clashes - or that you find a doc who you can get along really well with. I guess sometimes when a relationship just goes alittle wrong, it's hard to make it good again.

I know people who go to him and have done REALLY well, but I also know one person who has gone to him for nearly 20 years and has been up and down like a yo-yo, and is now not well (still or again, not sure how to see it) - and she is also, like you, discouraged.

DLL

Thanks for your reply, I appreciate it.
Best of luck

quote:

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Originally posted by dontlikeliver:
Perhaps he is frustrated FOR you, not with you? I don't know. Regardless, it's un-necessary for him to make sarcastic comments. Perhaps it's a communication issue where if you're confronting him with something you're sure he said at the last visit, which then contradicts what he's saying at the present visit - he may feel attacked in some way.

I wonder if it can be communicated about - outside a doctor/patient consultation?? Do you think you can have a chat (by phone) just about your concerns and how you feel (not physically) to his responses to you?

Do you write down what he says at each visit, so that at the next one when he contradicts himself, you can show the previous visits notes? Still, you don't want to pay to sit there and have an "argument" of he said, she said, etc.

But, also as someone said basically not all people get along very well, and perhaps you two are not a good match?

I don't know what to say and am discouraged to hear it - I think we share the same doc - unless you're speaking of another very famous doc. I cannot afford all the pharmaceutical grade supplements either, so I simply don't buy them, apart from sometimes some Cordymax or Reishimax, which I then take at the lowest dose on bottle.

He knows I don't have pots of money either and in my case has been pretty good about omitting tests which are not absolutely crucial, whereas otherwise he'd do them....and also given me options between drugs - more expensive or cheaper - BUT, I am in the early stages of treatment, only a few months in.

I do hope you can either "heal" the relationship and put it all straight and get over any clashes - or that you find a doc who you can get along really well with. I guess sometimes when a relationship just goes alittle wrong, it's hard to make it good again.

DLL

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I have also felt like a couple of questions didn't get proper answers, but it could be because I ramble on with a million questions and perhaps I don't give him a chance. But, I have to add I get this with my local doctor also - in that I go in intending to get an answer to something and leave realizing oops I still don't know the answer to that.

Anyway - I do wish you all the best.

DLL

[This message has been edited by dontlikeliver (edited 09 December 2004).]

[This message has been edited by dontlikeliver (edited 09 December 2004).]

good luck.

quote:

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Originally posted by lymesux:
I would agree that if you are not getting better after this long maybe a new doctor or second opinion is in order.

My honest opinion is that your venting did sound like you were essentially dissing a llmd who gives alot of his life to the lyme effort.

I'm sure that wasn't your purpose but just as a bystander since I don't see him and doubt i will for other reasons - I think that we all here should refrain from complaining about llmd's in particular online. IMHO.

I hope you don't take that harshly, I don't mean it that way.

I would definitely urge you to see another doctor, every doctor/patient relationship is different and you need to find one that you can work with and that you feel comfortable with.

I'm sure if you post in Seeking a doctor you would be able to find another llmd in your area.

good luck.

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I don't know if you'll come back to this website or not, but I hope you will get to read this.

Please don't be discouraged by the commentary to your post. People are clearly emotional, and I think there is a lot of misinterpretation of what was written. I also think there was some out-of-line judgement calls--sounds like some folks need a nap. It is hard to clearly express yourself in a forum like this, in writing because people read the words how they wish to.

Just to add my thoughts, I did not take your post as venting or dissing or anything of the sort. I also would not be the least bit offended if you did diss a doctor because I think that's what we're here for--to be sympathetic to your experience. By the way--I can relate to it, and have "dissed" my frist LLMD (much more harshly than any of the comments you made), with no regrets! If that offends someone,well, don't read my post. Ahhh, the first amendment, how I love you.

Ok Kate, you can email me anytime. I think you sound like you have a very clear idea of what went on during your visits, and frankly I am much more confrontational than you, and make no qualms about it. Reputation doesn't eliminate a person's every flaw. Nor does a fancy label (LLMD). Don't feel bad at all about what you said!

Please email me if you get the chance, and you can find support that meets your expectations on here--just not from everyone, so don't give up.

And yes I've been in your shoes but no i haven't dissed my llmd's on the forum.

I am sorry if you feel I was coming down on you personally but my point was just to say that I don't think people should say anything that seemed bad about specific doctors and I added IMHO.

I also wished you much luck and told you I believed you might want to find a new doctor.

My thoughts still stand - I wish you luck.

Btw, this is what I mistook as being 'negative' talk about the doctor: I am SO confused about all the "success stories" I've read about in regard to this doc. Without fail, everytime I see my doc he contradicts what he told me in the prior appt. I confront him and he just blows me off or makes semi sarcastic jokes. I literally have a closet full of half used prescriptions (none covered by ins usually), remedies, supplements and vitamins. NOTHING seems to be his choice of treatment for very long. I am largely beginning to feel like an experiment with my sole purpose being a means to obtaining data. Not too mention there seems to be zero concern for side effects, or financial implications. I simply cant spend $200 a MONTH for "pharmacy quality" vitamins when I'm spending hundreds on non convered abx!!? IF something WORKED perhaps I'd find a way but nothing has EVER worked! WHO are all these people who have had great success??
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I never "dissed" anyone nor was I "venting." I was explaining my experience and looking for someone who could relate and help. I am very discouraged and saddened by the judgment shown toward me on this website. I don't think it is kind to express your "opinion" if you have never walked in my shoes. I would never say anything unkind to someone in need nor would I pass judgement on something I had no experience with. This website is apparently not for me.

i feel your frustration, it's one thing most of us here share. hope it gets better soon.

one thing that crossed my mind was if you are sure of the right diagnosis....

just as it is hard to diagnose lyme, it is hard to diagnose some other things that share many of the same symptoms. lupus for one example.

or a 'stealth virus' - another BIG can of worms. even leaky gut syndrome...

at any rate just my 2 cents worth, "if all you have is a hammer everything kind of looks like a nail" may be in the mix.

i see a naturopath, not a llmd. i have all the diagnostic criteria for lyme disease. BUT my doctor says that having lyme antibodies in the blood does not necessarily mean you have lyme disease.

as if anyone needs any more confusion and frustration!!

did make me think that the test bowen research (?) does may be the way to go. i guess they actually culture the lyme bacteria and/or co-infections from your blood.

i MYSELF would be wondering after that much time in treatment by a renound llmd, if there isn't something else going on.

best wishes to you, kate!

btw there is a LOT of good information here especially in the "newbie info" that some of the old-timers (or lymers) have put together.

as frustrating as it is to get an initial diagnosis and treatment, i can imagine what you are going through.

I finally went to a non-LLMD who specialized in chronic fatigue. He dx'd us with mycoplasma and with a form of black fungus (I've forgotten the scientific name) and used an unusual IV protocol (the Bradford Protocol) to treat us for that.

During that time I found another LLMD through Lymenet. The fatigue guy that we were seeing (local) completely supported me in this, and was happy to learn more about LD (and has since dx'd it in several of his patients, whom he is now referring to LLMDs).

I didn't think much of the Bradford protocol at the time, but looking back I'm pretty sure it helped set us up for success with the LD/TBD protocol we are doing with the new LLMD, with whom I am extremely pleased. We've made more progress than I would have believed possible in the past year.

In my (way too long) experience with doctors, sometimes you just have to get lucky and find that one person who has the perspective that will work for you.

I wish you the very best of luck.

I also changed LLMD's (only after a few visits) because he contradicted his diagnosis and treatment and he wasn't giving me the right amount of orals I thought I should be getting.

He was referred to me here and some think he is a good doctor.

But, inside, I knew something wasn't right between he and I.

So, I'm seeing the new LLMD in January.

I think you are right in posting exactly what you did - I also posted something similar about the LLMD I ended up leaving.

I took your post as YOUR point of view and YOUR experience - not that you were badmouthing the doctor. I totally got what you were saying and I can only hope that if there are any others out there with the same problem - they will read your post and know they aren't the only person w/those problems...

If I were you, I'd start taking notes. I'd write down everything he said and read it back to him. Take those notes with you into the next appt. with him and if he contradicts anything, you have proof right in front of you.

I don't like sarcastic doctors. I tend to think that those type of doctors have somewhat of a 'god' complex.

I have received several "off line" emails from people who not only share the exact experience but appreciate knowing they too aren't alone. This was not an easy topic to broach simply because our doctor(s)is so hihgly regarded. No one wants to take the risk of speaking up for fear they may be standing alone in the end. Thankfully, I'm not.

I have amazing respect for my physicians plight. That has never waivered.

Best wishes

Of course, I'm discouraged that you (and my other friend) have not improved at all under his care, I also know that many do improve greatly, and I feel hopeful from that.

Unfortunately, I think that this kind of thing just happens with some people no matter who they see - i.e. what/who's not good for you is good for someone else, and vice versa, etc.

I hope that you will find someone who will make a difference and whom you will not feel is blowing you off, etc.

And, maybe something has been missed as far as your dx is concerned.

All the best,
DLL

I am lyme postive and have been for a long time. Don't be discouraged,lyme effects everyone differently so it only makes sense that treatment does as well. I would love to hear from some of the people who have gotten significantly better! I think that's all I needed ..a little restored faith to keep me going & to perhaps see things in a new and different light

quote:

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Originally posted by dontlikeliver:
Well, I do appreciate hearing feedback from others also, whether fantastic success stories, and even the "failures" - as I may learn from it all in some way.

Of course, I'm discouraged that you (and my other friend) have not improved at all under his care, I also know that many do improve greatly, and I feel hopeful from that.

Unfortunately, I think that this kind of thing just happens with some people no matter who they see - i.e. what/who's not good for you is good for someone else, and vice versa, etc.

I hope that you will find someone who will make a difference and whom you will not feel is blowing you off, etc.

And, maybe something has been missed as far as your dx is concerned.

All the best,
DLL

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I know and agree, the disease all affects us differently and the treatment also - not one size fits all, which is probably not easy for a doctor or patient to figure out what will work for whom.

I have a friend who no longer posts here basically because she's got her life back. Gone from totally bedbound and in pain, to working full time and leading a very physical life. She is also a patient of our LLMD. So, for her it's been very successful and she is very happy.

As for myself, so far things are going OK on the treatment, I'm pretty new at the treatment, but not the disease (15+ years). And, I think in the last 10 days/2 weeks I am finally seeing a small improvement on Mepron and Biaxin which I've been on since July. So, I am currently encouraged by this.

But, I can feel your frustration. Who wouldn't be frustrated after 2 years on abx and no improvement, no matter who the LLMD.

In the case of the famous doc, his success stories don't really seem to need this forum and don't speak up for him. Plus, we know what he has been thru, the fact that he kept treating people despite enormous opposition and personal suffering on our behalf, and he has, for no compensation, made himself available to speak to groups all over. Hoping that he would reach other docs, but these audiences turn out to be only patients.

So, in the face of all this, knowing his commitment and never having seen this side of him, it troubles me very much when a newby shows up and complains, first crack out of the box. So, I stand by what I posted earlier, and suggest that newbies make themselves known in less controversial ways, establish their character as a reasonable person, and do not engage in what appears to be reputation sullying of people who are not here to defend themselves.

Yes, I know no one is perfect and there are sometimes legitimate problems, which can be discussed without identifying the doctor, unless they are ducks.

If Kate needs encouragement, and don't we all, it is possible to have gotten this without mixing in criticism of a doc in this way. If I were her doc and found this out, I might wonder if she would be better off elsewhere. Docs have in the past been tipped off to patients who complain in public in a way that identifies them. Maybe some forgiving souls will not hold it against the patient, but if it were me, I would get mad!

I respectfully disagree. I don't feel we hear only one side of the story. I've seen good posts about doctors who fit the "Famous Lyme Doc" description, and don't think those should be discouraged because they only present one side. If anything, we hear the good side too often from people who have never even seen the doctor...and patients are only helped when this is balanced. As you wrote higher up, "we are missing that voice, which is one that needs to be heard."

I think we need to hear ALL sides. Kate's viewpoint, and need for support, is EXTREMELY valid and should be welcome here.

The doctor and his supporters are more than welcome to post on Lymenet where appropriate, as you just did. HOWEVER, that does not make Kate's experience any less valid or less valuable. Nor does it change her need for support.

unless they are ducks.

IMO, what makes a doctor a duck is in the eye of the patient. It doesn't make sense to me that patients who see a certain set of doctors can say bad things about them, but patients who have comparable experiences with another set of doctors must stay quiet.

Kate is a Lyme patient with legitimate experiences, just like most everyone here. I very much feel it helps Lyme patients to find others who have been through the same situation, which seems to me to be what Kate was looking for- talking about her frustration yet not badmouthing. The situation when seeing a well-known doctor is very unique, and I don't agree that she could have received the same support by following your guidelines.

However, you do make a good point that the doctor could see it and that it could thereby affect her care. That is something all of us need to be aware of when posting, and then decide from there if it is worth it personally.

Cheryl

quote:

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Originally posted by lou:
The problem with these kind of posts is that we hear only one side of the story, and it is not fair to have a doc described so well that the identity is obvious, but that doc does not have any chance of clearing his or her name by telling the other side.

[This message has been edited by lou (edited 11 December 2004).]

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I think it is important to find out the faults as well as the good qualities. When I make doctor referrals, I try to give examples of each doctor's downside, so the person can decide if that is acceptable, or something they can't work with.

I do think it is VERY important that each person is free to find a doctor that works for them. No doctor is going to be right for every patient. Most of all for Lyme. There are so many potential protocols, most of them with very little in the way of studies to back them up.

Sometimes you just need to see someone who can take a fresh look. Sometimes the patient can't hear what needs to happen from a certain doctor.

When I used to be a physical therapist, I would sometimes get frustrated with a patient who I felt wasn't listening to what I was telling them. They would repeatedly do an activity that would get them into pain.

The they would go to another therpist for a session, and come back with a brilliant insight! They would tell me how the new therapist told them the exact answer to their pain. Guess what it was? Exactly what I had been telling them for months! Somehow, they had been able to hear it, finally.

When this first happened, it was upsetting to me, feeling I was somehow doing my work wrong. Over time, I learned that I also could do this for other therapist's patients. It had more to do with a fresh voice, than my method of teaching.

Both patients and doctors need this fresh voice when things get stuck. Optimally, you could let your doctor know you wanted another opinion, and could still return.

But if not, I think you have to go anyway. It's your health. Sometimes you have to let go of something old before a new opportunity will present itself.

Can someone PLEASE tell me how to disable this?

quote:

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Originally posted by lou:
The problem with these kind of posts is that we hear only one side of the story, and it is not fair to have a doc described so well that the identity is obvious, but that doc does not have any chance of clearing his or her name by telling the other side.

In the case of the famous doc, his success stories don't really seem to need this forum and don't speak up for him. Plus, we know what he has been thru, the fact that he kept treating people despite enormous opposition and personal suffering on our behalf, and he has, for no compensation, made himself available to speak to groups all over. Hoping that he would reach other docs, but these audiences turn out to be only patients.

So, in the face of all this, knowing his commitment and never having seen this side of him, it troubles me very much when a newby shows up and complains, first crack out of the box. So, I stand by what I posted earlier, and suggest that newbies make themselves known in less controversial ways, establish their character as a reasonable person, and do not engage in what appears to be reputation sullying of people who are not here to defend themselves.

Yes, I know no one is perfect and there are sometimes legitimate problems, which can be discussed without identifying the doctor, unless they are ducks.

If Kate needs encouragement, and don't we all, it is possible to have gotten this without mixing in criticism of a doc in this way. If I were her doc and found this out, I might wonder if she would be better off elsewhere. Docs have in the past been tipped off to patients who complain in public in a way that identifies them. Maybe some forgiving souls will not hold it against the patient, but if it were me, I would get mad!

[This message has been edited by lou (edited 11 December 2004).]

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