posted
good interview... go dr.mercola!!!
Posts: 50 | From nyc | Registered: Aug 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
The million dollar line here from Dr. C:
"One of the things I would like to do is to call 1,000 former patients to find out what our long term success rate is, but I have just not had the chance to do that yet," Dr. C says.
Yeah, me and a million others would like you to do this. lol. I'd say it's time to pick up the phone and make time ASAP. Kind of important, huh? If you're going to come up with percentage improvement rates for all antibiotics under the sun, I'd work on this aspect first to make sure the treatment actually worked long-term!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Thanks Bea - Good interview
Posts: 448 | From minnesota | Registered: Feb 2010
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Yes, thanks, Bea. APART from not having found out about longterm improvement rates, Dr C sounds to have an organised , methodical approach.
**edited name of LLMD**
[ 06-02-2011, 12:59 PM: Message edited by: Lymetoo ]
Posts: 1647 | From UK | Registered: Nov 2008
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map1131
Frequent Contributor (5K+ posts)
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posted
Seek, maybe I can pick up the phone and call Dr C and tell him there was nothing he could do for me. Abx was my enemy and he didn't cause it to be my enemy. He tried his absolute BEST with me. For that I give thanks to God and Dr C.
I'd go back to Dr C in a heart beat if I need to.
I sure hope you never become allergic to the abx, seek. What would you do blame it on the first LLMD you went to see?
I know you would probably travel around the countryside looking for the "cure". Blame every LLMD along the way because they DON"T HAVE CURE.
They don't have the CURE for cancer yet. How many years and trillions of dollars have been used for cancer.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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But hubby was also one of those who did not do well with monotherapy and treating one infection at a time. But obviously he was not a typical Dr C patient -- he has zero antibodies on Western Blots. Plus he was one of those 1% who get IV antibiotics from this doc.
I wish there was better testing. I have always felt that those with arthritic lyme versus predominantly neuro lyme respond to different treatments. And the difference is probably in the strain of lyme they have. But it could be something else like which coinfections they have.
The problem with the statistics quoted is that they are based on whether you feel better after treatment x -- the stats are not based on whether you are in remission or consider yourself cured.
I have to agree with seek -- the long term outcome is much more important than short term gain. All short term improvement means is that you are hopefully treating the right problem -- i.e. that you have identified your infections.
In hindsight although the doc tried and hubby did have some minor improvements we stayed with this doc much too long. I think that is something patients need to be aware of. If something is not working in 6 months or a year then it may be time to move on. 3 years was too long -- and yes we stayed with our next LLMD for 3 years as well and that again was too long. Currently we are in between LLMD's and that is definitely not a good place to be.
I think it is good that this doc explains his protocol up front -- wish more docs would do that. It is so hard to figure out what to expect from a doc even after talking to other patients.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Well that was interesting what Dr C said about blood disorders. I have factor 5 leidon and a very high fibrin count. He talked about thyroid issues. I have hashimoto's and my thyroid is now dead, just a lump of scar tissue. He talked about the nasal swab. I had the swab and was positive for staph.
I had a very positive lyme test and was positive for bart too. I have also been positive to several viruses too.
After years of antibiotics I am only about 25% better. That 25% is way better then I was but not close to where I was before getting sick.
I'm starting to wonder if I need to treat the viruses too.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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seekhelp
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posted
I am not trying to start any brawls. Pam, I'm guessing I'm not your favorite here. lol. At least i'm not Debbie downer this time.
Of course I realize there is no cure for Lyme like cancer. I just find it unbelievable all these LLMDs promote high success rates, but don't bother following up with patients. This isn't treating a cut. These are EXPERIMENTAL protocols from most if not all LLMDs. I feel they have an obligation to do this follow-up to know if what they charge for has any merit.
We spend our life savings thinking they know the answers at times. A lot I got from the video shows the physician just wasn't sure what worked or didn't, but keep piling on stuff (i.e., Vitamin D). Definitely knowing impact of each item is a hellish task, but it is important to try to identify. Another example: Rifampin = 45% success rate - huh? Success how?
I'm not isolating any one LLMD. I fear they don't track long-term statistics because it isn't in their best interest to do so. We do this with vehicles, investments, and other services so why are they exempt from this needed process?
I respect Dr H in NY for standing up in a room and saying his patients relapse 99%+ of the time when off Abx and no maintenance protocols. It's a horrid story, makes me question the value of treating with Abx, but it's honesty. One doesn't go to the office with the belief nearly everyone who is treated realizes 'success' which I would guess means cured/remission to many.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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map1131
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posted
Bea, I don't want a brawl either. I just don't like to see Dr C attacked. He has helped many.
I think the world of him and I don't do LLMD at all since '04. Who's to say his way in the long term won't be better.
You and your husband have been through he!!. Whatever it takes to get there is what you, me and others do.
I just don't like to see Dr C bashed. I thought this was not allowed. Goodness LLMD are disappearing for one reason or another in the last 10 yrs.
I'm scared for everyone, all of us. But I know I bought the machine that is going to keep my head above water.
When the Lord has made contact in the most profound way possible....you know you have support. My problem anymore is I can't figure out if it's bart that is the enemy?
The last couple months, I've gotten very concerned with myself and trying to figure out what I'm dealing with. My instincts are now telling me I'm dealing with babesia also.
I haven't had babs sx since 2000. But I'm wondering if it's been hidden under the other crap or has a recent tick bite in the last year or two added that monster on top of me.
I want to know the rules of this board????/ Are we or are we not allowed to bash or put down the LLMDs or alternative docs that are trying to tx our sx?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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seekhelp
Frequent Contributor (5K+ posts)
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posted
I do not see it as bashing. Self-educating is more appropriate. Knowing what your treatment may look like before deciding to go is priceless.
Questioning does not equal bashing. Does it when you buy a car and ask for a CarFax report? If you look at a Consumers Digest to evaluate the best vacuum, are we wrong?
Same idea.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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map1131
Frequent Contributor (5K+ posts)
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posted
These LLMDs are not gods. They are trying the best way they know how.
My goodness if it wasn't for some of our LLMDs I don't think many of you would be able to post here.
But I also know in my own experience had I not seeked(no pun intended) another way to this madness.....I would not be at my computer able to write or help others.
I'm tired. I'm beaten by so much at this time. Not just from what's happened to me the past week.
What's been happening to me slowly but surely the last several months. I am not myself.
I do not recognize me. I'm having issues and I don't know where to turn. I've got Igenex order form in front of me. I don't know what to check off because I don't know the bad guys in my body.
I'm scared. More so than I've been in 7 yrs.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I saw Dr C years a go and really liked him. I just couldn't afford him or the long trip to get to him.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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I don't really think either Seek or I were bashing the doc.
And believe me that I can totally understand your confusion. Hubby just got out of the hospital for the 4th time this year. Right now I haven't been able to talk any of the docs into testing him for ehrlichia or rocky mountain spotted fever. He probably does not have those infections but with the fevers I thought those were reasonable things to test.
I hope you can figure out which infection is holding you back.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seek .. He says 97% GET BETTER .. that's not hard to believe.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
If I can just get rid of the babisia, I'll be happy. I think I have bartonella too, but this last tick bite (nov), made me the sickest out of the 10-15 years I've had lyme (didn't know it).
Has anyone here tried the Buhner protocol (Healing Lyme-book)? After hearing people still struggling with antibiotics, I'm thinking I may want to go this route after I get rid of my babisia. I looked up his book on amazon, and several reviews said it worked.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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CherylSue
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posted
Dr. C was the first LLMD I saw, and I did see improvement over time. I don't think his monotherapy, one size all, and accessibility was the best method for me, and I found an up and coming LLMD closer to me.
With her I improved even more. I felt that she was more patient, intuitive and more accurate at targeting the infections that were hurting me, not using just some formula.
I think Dr. C was the best when few doctors were treating Lyme, and he was one of the brave pioneers. I think over time he just became more tired and overwhelmed. He's good, but not one of the top 5, in my opinion.
However, we need to recognize that this field is so incredibly difficult, and the fact that these doctors are practicing at all is to their credit.I applaude them all.
Posts: 1954 | From Illinois | Registered: Aug 2007
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map1131
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posted
I've always thought since the last time I seen Dr C in '04, that I needed to write him a long letter and tell him where I went from him.
I've never sat down to say Thank you and tell him he was one of my angels in my life. I need to tell him what I've learned since I last seen him.
I know Dr C feels defeated somedays. He's a man that has given it so much for his sick patients. He feels defeat on many days as all of us do!!!!!!!!!!!!!!!!!
Can you image wanting to help, doing everything you can think of to help a patient and some patients no matter what you've given them.....
they can't improve. Dr C is the type man that something like this would effect him. He would wonder what have I missed about this patient?
What should I do next for this patient to get her out of that wheelchair? Why did my ALS patient die when I thought he was getting the best to get better? Why?????
That's the Dr C I know.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Amen, Pam. He feels it deeply and does his best to get people well. This video made me miss not seeing him for the past 2 years!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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GiGi
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Member # 259
posted
Dr. C. was invited by Dr. K. several years ago, to take part as a speaker/teacher in a three day seminar. Dr. C. declined. I was actively involved in this. Maybe Dr. C. would think differently today. It is a learning process that all doctors go through.
Dr. M. is a promoter, but I would not ring his bell if I were looking for a doctor to help me get well. He used to have a terrific website, but in recent years I seem to always run into a commercial for something.
It is tough to swim against the current.
Posts: 9834 | From Washington State | Registered: Oct 2000
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hiker53
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posted
I agree that Dr. M is not the greatest doctor, but I think very highly of Dr. C. He is open minded, encourages other treatments besides antibiotics--such as rife. He discussed dental cavitations with me etc. He had great respect for my decisions even if they did not agree with his. Truly a wonderful doctor who really is trying to help his patients.
Gigi, Just because he did not speak at a conference with Dr. K is not a reason to put Dr. C down. He encourages alternative medicine, but I am sure he did not want to mention them on the video.
posted
I would say so .. just guessing! I've never seen his site.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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annxyzz
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posted
The patients I know who have seen Dr C did not improve significantly . I AM SURE HE DOES HIS BEST . I am skeptical of spending thousands and ingesting ABX for MANY years to get well.
I have personally made progress with rife, herbs ,after 3 years of ABX ( part of this was self treating ) . I can say I function far better now, but am not sure an llmd would make a great difference unless I had a fortune. The unknown in this picture can bankrupt any of us and leave us with minimal progress .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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seekhelp
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posted
If you post that just one more time, I'll understand. lol. Six times was pretty good, but I still need to hear it one more. Kidding.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I'm on more than one abx - I appreciate his approach because he listens to me, my body and treats accordingly.
What's important to me is finding a doctor who isn't a one size fits all. I need my doctor to follow their typical protocol but if something in that protocol isn't working for me (too strong, reacting to it etc), to be open to listening to me, following the clues my body is sending him, and edit the protocol accordingly. Dr. C does that for me.
I'm not touting him as the very best. I simply don't know if he is, or who can really say they are the best. I can say I'm not emotionally attached to him or any doctor so I don't typically get too excited about arguments or back and forth banter... however, I did want to share my personal experience with him thus far.
And if in a couple years I'm not significantly well and he and/or I feel it's time to move on and try another LLMD, or treatments, I will do so with no ill will toward him.
This is a highly complex disease - seems to vary from person to person - not an easy one size fits all kind of deal. I realize that, understand that he isn't God, isn't all knowing. He is a medical doctor who knows a lot, has a lot of experience, has gotten many people well, has a huge heart and wants his patients well.
Posts: 256 | From Texas | Registered: Jun 2010
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posted
Very cool interview, a good discussion on treatments. I was wondering, does anybody who has seen him (or other llmds) that treating hormones while treating lyme and co. affected their treatment positively?
Posts: 113 | From south dakota | Registered: May 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
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posted
No I did the hormones for one year. I did not feel that they were helping me, so therefore I decided to stop the tx.
I was also using HGH shots in my tummy and believe me if I'm giving myself a needle I am trying real hard.
Today I might have more success with that type hormone stuff. But according to my new endro specialist....
they found blood test just as accurate or better than 24 hr urine. If Dr C believes that I would say she knows what she is talking about?????
All my hormones, gland productione yada, yada according to blood are good with exception she thought my thyroid replacement was too high and that I am post menopausal.
I just haven't decided if she knows me and understands the nightmare I've been thru.
I know lowering my thyroid meds was a train wreck and my PCP moved me back to what I was on 3-4 months ago.
A crying, insane, over emotional woman is not where I've been and I've felt like I've been in a train wreck since.
Lyme & co patients need a higher than just normal TSH to survive from what I'm reading and learning. I can't use energy crying and getting upset about things that happen in my life.
No, I don't think it has anything to do with post menopausal. I even doubt that blood test.
But what do I know? My body!!!!!!!!!!1
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Amanda
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Member # 14107
posted
I think Bea makes a good point.
IF you are with an LLMD and have not made at least some progress after 8-12 months, then its probably a good idea to go see another LLMD. Even if it is just for a consultation or 2. You know, fresh eyes might see something.
I have known so many people with Lyme, and after all this time, there is no one protocol or LLMD that works consistently well.
'Tis the pits, but there it is
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
I have a feeling the answer to his question will include both those who have remained well for a long time and those who will have needed further treatment. There just is no one-size-fits-all.
Posts: 13117 | From San Francisco | Registered: May 2006
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