seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Some of you know the LLMD I currently see. For those who do, can you shed any insight on how the second appointment goes? Duration? Issues covered? Thoroughness? Types of drug therapy recommended (single vs. combination Abx)?
I've been perplexed by the original approach to some degree. I'm trying to determine if there is something more perhaps I'm missing.
I'm trying to get a better idea on some stuff. Please PM me as this shouldn't be discussed on the board.
[ 06-12-2009, 08:54 AM: Message edited by: seekhelp ]
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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bettyg
Unregistered
posted
help, my your are mysterious tonight.
you can show the drs. last INITIAL and state where you are going.
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
/\ Clarified it BG. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
He starts with a single abx then depending on your reactions to the protocol he will prescribe combos at a later time. He doesn't like the multi-combos but that doesn't necessarily mean he doesn't prescribe them.
Before I decided to give abx a break I was doing some doubles like plaq. and biaxin, There were 2 or 3 other doubles he had me try. Most of those I also pulsed flagyl.
Dr. C is brilliant and treats each case differently. Your in good hands.
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
What I'm tring to see is if he'll hit two forms of Lyme with a co-infection drug as well. Is it an asbolute no-no for this LLMD? Will the LLMD ever hit Dr. B dosing (i.e., 2000 mg Ceftin)? I'm looking at the long-term big pic. Again, feel free to PM me.
I'm looking for more than this Biaxin/Plaq stuff. That's a single drug in my eyes. The plaq is just candy to make Biaxin work better. Biaxin itself kills no co-infections so it's stretching the situation out more as usual.
People like TF beat this in a year using Dr. B's protocols. I NEED to win in a year too to save myself. This is an enormous trip and a lot of money so I want to make sure the investment is a winning one.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I know a few people that see him. They are not on this board though.
I called yesterday to get details. He's expensive and there are 3 of us. Plus a 13 hr or more drive.
The one thing I didn't like that the nurse said was that we would have to get special testing done in his office. Like for hormones, heavy metals, etc. Of course this means we would have to pay for that too. And the cost would be unknown until you get there. Most of us can't do that!!
I would prefer getting it done at a local lab so my insurance could pay.
To me he sounds like my dream LLMD! I would love to go see him but I think we are going to see Dr H in WI for now. Maybe in the future we will get to go?
I do not know about what he does for abx. Do you want me to ask my friends that see him?
Amy
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
I have been there for the second visit. He does recommend some additional testing, for allergies, etc. but it is entirely optional. I also think he charged only what the lab charged.
He seemed very cost-conscious to me. He even said part of his job was to help us spend our money wisely.
Posts: 984 | From US | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Amy, I'm not going to go into a super high level of detail publicly, but I'm letting you know he does not require you do all this testing. Almost everything is optional based on what a patient can afford and it's almost like pulling teeth to actually get him to run lots of stuff because he's cost conscious (good and bad depending on your outlook).
Jkmom, PM me and I'll give you some insight on something you wrote
What I simply want to know is his level of aggressiveness at the second visit. Does he ever get to NY docs level of Abx aggressiveness (i.e., treating multiple forms of Bb concurrently along with co-infections). Is it mono therapy forever? Do the treatment plans get more definitive? I ran down this road with my old LLMD and was extremely disappointed and made no true progress. My old LLMD was 2 hrs away...this one is 12-13 hrs!! I need to make tough decisions and see how likely it is this is a long-term solution that makes sense.
I'm becoming an avid believer babying this disease is a road to failure, especially for me. I'm concerned about Abx-resistance, treatment taking years and years and years, not being sure what I'm treating actually is the issue, etc. Whether I can handle the big guns is to be determined, but if it's never an option, I'm not sure I can pursue forever.
There's lots of stuff covered (hormones, detox, etc.), but you can read all that here. Self-educating is easy. At the end, it's about how willing is a doc to whip out the ole' script pad and do what it takes to win. If it was just knowledge, I could go w/o a LLMD and just listen to all of you. You easily have more collective knowlege about Bb / cos that any single LLMD.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Amy, Seekhelp is right. YOu don't have to do ANY testing you don't want to. He's very cognizant of our money issues. If you tell him money is tight, he will respect that.
Seek.. If you have protocols in mind, discuss them with him!!! He is very open to what the patient wants .. within reason.
So let him know your concerns, etc.
As for time issues, it's usually about 45 min to an hour for the seocnd appointment. Again, if money is an issue, tell him upfront that you need to get out of there in an hour ( or whatever ).
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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seekhelp
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Member # 15067
posted
My only issue Lymetoo is I'm not a LLMD and can't efficiently dream up protocols. I need my docs to hit it hard and decide the best course. I can guess to some degree, but I'd rather have someone w/true experience putting combo Abx/anti-malarial treatment together that will eradicate this as fast as humanly possible. Low and slow may work like many say, but I don't have years. I need to know if it's beatable within the next 6 months really. I've been treating for Lyme / Babesia now since Aug-08 with a break (been off work since Sep-07). That's sickening as it's nearing a year. I've had no aggressive multiple Abx treatment in this WHOLE period.
Money is an issue, but I want results and accurate protocols. The drive is far and the trip is expensive adding it all together. Saving $50 in the short-term can cost me many tens of thousands due to not working. I need a doc to get this. My old local LLMD never did. No matter what I said just went out the other ear because the doc had his set ways of treating and wasn't going to treat aggressively like Dr. B. The LLMD was clear and stood his/her ground. When seeing patients walk in who were there for 10+ years, I shook my head and said OK I'm at the wrong place. lol.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Still looking for true, real-life experiences that this LLMD is willing to Rx the type of protocol I outlined in earlier posts on this thread. PLEASE if you have been a long-term patient and have experiences, I'd really appreciate a PM. I realize one may not be comfortable divulging it on the forum.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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quote:Originally posted by seekhelp: [QB] Still looking for true, real-life experiences that this LLMD is willing to Rx the type of protocol I outlined in earlier posts on this thread.
WEll, I'm sure confused by what you've said. YOu referred to protocols mentioned here and I see none... and then say you can't dream them up.
If you can't come up with any, then follow what his protocols involve.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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feelfit
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How are you going to do more than monotherapy when you are having trouble getting up to dose with one med?
Just wondering Posts: 3975 | From usa | Registered: Aug 2007
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Well the person who made my appt had me under the impression that it would by costly! So thanks for the input.
Seekhelp if you want to PM me exactly what you are looking for I can send it to my 2 friends that see him. Maybe they will have some answers for you?
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Feelfit, I decided I'm pushing through more than I did before. Within reason. I gotta toughen up a bit more than I did to improve (if possible). I was able to do multiple full-dose Abx under our ID doc friend successfully. It's which ones that make a difference.
I believe most of us have issues with particular drugs and maybe the key is finding what we can handle. Drugs that hit the PA-450 pathway may be my downfall. It's nothing more than a guess.
Lymetoo, I didn't mean I can't come up with stuff. Of course I can read people's signature lines. I just meant I'd prefer to have my doc generate protocols that may address two forms of Bb concurrently (i.e., Biaxin/Ceftin and a co-infection treatment). I would always trust my doc's Dx on my co-infections and treatment over anything I can come up with. I have no experience other than reading the hundreds if not thousands of posts here on protocols Rxed by LLMDs country-wide.
I'm not trying to cause issues. I just simply have to figure out if the doc is willing to do this type of protocol if asked. Some docs would say no way out of habit (like my old local LLMD). Nice person, but no persuasion/begging in the world would make this doc do something over a specific level of risk the doc was comfortable with for personal reasons. This prior experience may not be the case at all here. That's all I'm trying to assess. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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