posted
Specifics can't be shared here except thru PM's... I was successfully treated for 4 yrs and have been off abx for 5 1/2 now. I got really good care from him and I spread the word all the time!
You will probably be PM'd by Wild Condor who will tell you he's not any good .. but remember, she's never been treated by him.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I see him and he's a wonderful doctor who has taken me from about 57 wicked symptoms down to the last 3 and we gaining on them right now !
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
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posted
what's the deal with wild connor's opinion then? how can you even HAVE an opinion about a doctor you haven't even seen?!
Posts: 220 | From Kansas | Registered: Mar 2010
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posted
Dr. C is not a member of ILADS because, well, I don't want to say too much on here. He told me this, so I'm sure if you are interested, you can ask him yourself. That is the only thing that scares me. I have been seeing him for 3 years. I'm sure if you want to be aggressive, he will help you do that. I've not wanted to be too aggressive because I cannot affort to herx, plus, I've had to learn the hard way about my stomach and probiotics. It was sure nice to hear there are people here who are getting better under his care. I'm not crazy about the fact that he is not with ILADS, but it was not his fault. If I had a choice, I would probably see an ILADS doctor, but I don't driving wise. I am grateful that Dr. C is brave enough to treat at all and he is active now both politically and educationally. So, who's complaining? I just think the guidelines are pretty cool.
posted
That is the thing though. He doesn't go by the guidelines. Hey please, don't get me wrong. Any doctor who is willing to stick their neck out for us is a hero. I love Dr. C. It just worries me that for me anyway, we don't go by the guidelines.
-------------------- Dying is easy. Living is harder. Posts: 257 | From owensboro kentucky | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I used to see this doc. I think WildCondor is speaking not from her own, personal experience, but from her collective experience of working with more Lyme patients than any of us ever have probably. She can speak for herself as I don't know her history well enough.
I just believe she consults with endless patients and gets testimonials of success/failure with LLMDs all around the country and forms opinions with this data. She seems to know a lot about many of the LLMDs working today.
As everyone knows, inidividual results will vary by patient with any LLMD. Just be educated as you can to have a fighting chance and make your decisions. That's all one can do in this web of horror called TBIs. I personally am ready to try to follow Dr. B-treatment guidelines just once to see if it helps. If not, I don't see the Abx rouse as an option much longer.
While I respect all LLMDs for even willing to pull out prescription pads IF their hearts are in the right place, this to me doesn't make anyone my 'hero.' Getting me cured/in remission does. This is our lives on the line, our livelihood, families, etc. Just getting treatment doesn't mean we'll get better. Getting the absolute best treatment gives us a fighting chance if we even buy in to the chronic Lyme Dx to begin with. Anything less is actually costing me $$$ I desperately can't part with when ill.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Without Dr. C, I would either be dead or very, very ill, so he is my hero. Yeah, I'd rather be cured, but beggars can't be choosers. Also, I am sure that Dr. C would go the guidelines with me if I asked. I just can't afford to herx. Oh well, good luck everybody, and once again, God bless the ones who are willing to stick their necks out for us when so many others aren't.
quote:Originally posted by abigail: Also, I am sure that Dr. C would go the guidelines with me if I asked.
He most likely WOULD! But I'm with you, I was hexing enough on what I was given, didn't need a worse herx, thank you very much!!
I have no clue what sixgoofy edited from my statement!
Seek.. I'd like to know how many times you saw Dr C also! Bet it wasn't more than twice.. IF that.
I also talk to Lyme patients from around the country, seek. I have for 9 1/2 yrs now. I know who is getting well and who isn't also!
I was "cured" and so were many others.... hundreds and probably thousands.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Not sure than any one set of guidelines is the perfect answer to all cases of LD. I mean guidelines are not set in stone like some kind of commandements.
I think many LLMD's use the ILADS guidelines as a go by, or a starting point; but most interject their own treatment protocols based on what results they have seen personally work for patients; and hopefully based on each patient as an individual.
Just because the ILADS guidelines have been used and proven effective in many cases; doesn't mean other protocols don't work just as well.
Most LLMDS don't advertise their treatment protocols, even though they work, because they don't want to loose their license; because then how many people can they help?
I see LLMDs that have researched LD for 20 and 30 years that have a high success rate of cure, but they are not publishing this information because they would be putting themselves at too high of a risk.
But Dr B can, because he is not practicing any longer. He is not at risk of loosing his livelyhood at this point. It doesn't mean that his guidelines are the only ones that work. And it doesn't mean that they don't work.
This is my opinion.......it takes a certain amount of time to get well, and the exact protocol might not even matter that much.
As WC has seen the Dr B protocol work; even though she herself was on antibiotics for 4 or more years; I'm not sure that she has made the rounds and actually studied in detail all other protocols...... those that are not published for the whole world to see.
I respect WC for her work in the lyme community; and thank goodness there are ppl like her out there; but I think it is wrong to judge any LLMD without having done his protocol yourself and then making a judgement.
Also many ppl go to one LLMD, then 2 or 3 years into treatment they change to another more aggressive one, and get well a year later. Isn't it possible that they were just going to get well in that amount of time anyway?
I mean it does seem to me that from what I can see that the majority of chronic lymers get well somewhere between 2 and 5 years, no matter what protocol or protocols they indulge in.........aggressive or less aggressive.
I'm not promoting one over the other, but I do see that both work.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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PS.. I also admire WC for her fine work in our community.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm happy to answer more in a PM if interested. What SG says does make some sense to me. This whole disease/treatment guessing just sucks period. It's criminal. One thing I DO NOT buy into is the notion that yr 3 rolls around and boom insufficient protocols will cure someone - nope. Maybe improvement will occur, but I'm not reading many here reach 'normalcy' if I look at the big picture.
Good job Lymetoo helping others for so long. Not having that level of knowledge makes me have to read everything I can and dig into other people's histories to make my best educated guess on what may or may not work - that's all it is...a guess. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Thanks for replying here, seek. I do hope you find the answer for you to get well SOON!!!! It's all about finding what "bug" combo you have and then getting the right meds for it.
Not an easy task.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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WildCondor
Unregistered
posted
Hey guys and gals,
To clarify, I have never personally met or been treated by Dr. C in MO. However, over the past 10 years through my website feedback, support groups, and social networking, I have seen a large quantity (hundreds) of patient feedback reports and the results on Dr. C are discouraging overall. When I say discouraging, I mean that the consensus seems to be that he is notorious for under-treating and using mono-therapy which may be fine for some people, but not for serious cases.
Out of respect for Lymetoo, and other patients who are under his care, I will not elaborate with negative feedback on this subject on this forum.
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