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Originally posted by Sooner Steve:
I certainly agree if you are referring to the vast majority of MDs. But what about the LLMDs, do they do a good job of treating Lyme and answering questions? I won't have my 1st LLMD visit until 2010 so I don't know what to expect.

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Its hit or miss. I guess its kinda should be weighted whether you can do research on your own or not and how good your LLMD really is .

Dr's (even LLMD ) see you once a month at best. they dont spend anymore time on your case than this.

If you dont bother to do your own homework and research most likely you will get a canned treatment which might be effective or not . You may miss on treatment modalities which could be curative for you.

Plus there is so much beyond prescription abx in treating it that you simply wont be able to address it with just one person (well not unless you see him many many times - )

I believe in doing everything in my power to treat it .

Good Dr is a great resource -dont get me wrong, but I believe its only one resource out of many one could use.
 

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Posted by Lymetoo (Member # 743) on :
 
We ask a lot of questions that we just wonder about sometimes and don't want to "bother" our LLMD's office with it... at least that is it for me. (I'm no longer in treatment, but love being able to ask stuff that I can find out ASAP here.)

I know I used to have questions just about everyday when I started treatment. You can't call your LLMD's office everyday!!!!

It's also comforting to know that others understand exactly what we're going through.
 

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Posted by seekhelp (Member # 15067) on :
 
Advice is free here. LLMD's office charges $1+ per minute. I'll take collective information for free from patient's of all the very best dream team NY LLMDs' patients over one nurse's opinion who doesn't know me from anyone. I thought about it one time and calls to long distance LLMDs are a complete waste of money and time. Really, what are they going to say except herx or stop meds due to possible allergic reaction? Liability is too great to say otherwise. We can all read med inserts to determine allergic symptoms.

When long-distance as most docs are, They can't see you in person, do physicals exams, or other objective evaluations. I could be dying and they'll just say go to the ER. Then once in the ER, rest assured they won't be talking to the staff there no doubt. They don't get involved in that type of stuff.
 

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Posted by randibear (Member # 11290) on :
 
well when your doctor charges 175 per visit and says absolutely no phone consults, make an appt, and you have to wait at least a month to get in....

ta da....

you ask here and believe you me, you get better advice, cheaper, and friendlier, and less stress of driving for two hours to get there.

if we could all get in at any time and have free phone consults 24 hours a day, there wouldn't be a need for this board either.
 

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Posted by Sick Tick (Member # 23003) on :
 
Experience with the disease as opposed to education only I think. Our MD's are a great resource, but unless they have experienced the disease, they cannot answer many of our questions.

You will learn to love this site when at 10pm you have a question and several people respond with their own experiences. Very comforting to hear that others have had the symptoms you have had., And none of us wants to go to our MD with every little symptom....the weird ones especially...and overwhelm the poor docs!

That said, the MD is the one with the intense medical background, and also the one with the prescription pad (hah!) We need them, and anything in the way of medicine and even herbal treatments, detox, etc. we discuss here really should be double checked with an MD prior to being initiated
 

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Posted by Lymeorsomething (Member # 16359) on :
 
LLMDs are supportive, but they don't have all the answers. This stuff isn't the flu where you can take a swig of nyquil and feel better the next morning. It's highly complex and typically manifests in a number of unsettling ways.

So one could also ask the question: Why not be as informed as possible?

Second guessing is part of the learning process.
 

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Posted by sutherngrl (Member # 16270) on :
 
Second guessing is how we got here in the first place! And thank goodness we did second guess.

I trust my LLMD, and if you don't you will have a miserable time. But it took me a while to get there, since I spent 2 years going from so many doctors that could have cared less that I was sick as a dog.
 

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Posted by Brussels (Member # 13480) on :
 
Find a single professional who is experienced and knowledgeable about all these fields below:

- all killing protocols on earth, not only for the Borrelia but for any other infectious agent that lyme patients suffer (abx, herbs, homeopathics, eletromagnetic frequencies and their interaction if combined)

- all cleansing protocols on earth (herbs, drugs, suplements, homeopathics, EMR treatments, saunas, massages, enemas, parasitic cleanses, how to eliminate heavy metals, plastics, and the 100,000 chemicals that a person could have in their bodies causing disease)

- all immunomodulating and imunostimulant protocols on earth (herbs, homeopathics, chemicals etc)

- many chronic diseases on earth, as lyme mimics dozens of diseases (that would include the knowledge of a rheumatologist, neurologist, endocrinologist, etc... even a dentist, all combined)

- allergy specialist (and how to solve the allergy problem, specially for the MCS people)

- someone with thorough knowledge of diet / nutrition / exercise and that can advise you on that

- .....

It's impossible to be knowledgeable and EXPERIENCED on all these fields (human life is too short).
 

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Posted by randibear (Member # 11290) on :
 
i trust my gastro without question -- no doubt about it. i won't let anybody else near me and i tell him that.

besides he's cute....and i've known him for over 20 years through his three marriages..

he's a keeper.
 

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Posted by JR (Member # 16898) on :
 
Well, I trusted my LLMD- and followed his advice only.

I never changed the course of my treatment because of information I got from a website or without running it past my LLMD.

I kept it simple. You'll go crazy with all the different answers you'll get for the same question.

There are however invaluable tidbits to be gleaned from fellow patients-such as-

'dipping flagyl in olive oil before taking-goes down a lot easier.'
 

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Posted by METALLlC BLUE (Member # 6628) on :
 
I did the same thing JR did. I trusted my LLMD and followed his advice only. I "never" changed course during my treatment. 7 years later I was still sick at 35%. People had been telling me over and over for about 5 years that my LLMD was wrong, that he wasn't treating my illness aggressively enough and he wasn't treating my co-infections correctly.

I told them "How do you know I have co-infections?" Other Lyme patients said "Because it's patently obvious, you have XYZXYZXYZ and you're not getting better. I told them that my tests were negative. They had explanations for that too -- but none of them had "proof". They only had opinions made over the internet. I chalked it up to them just seeing what they wanted to see and that they weren't trained to give me credible nor objective advice.

So, 7 years later, I went to a new LLMD. My girlfriend who also has Lyme (which was a total coincidence when we met, I had no idea she was sick too), told me gently, but consistently, that she was certain I had co-infections and needed a much more thorough evaluation. I trusted her more than anyone else, so I took her suggestions.

They ran exhaustive testing. I had asked Dr. D, my previous LLMD -- over and over if he was absolutely sure I didn't have Babesia, Bartonella or other hormone regulation problems. He said "No, you don't have those, and even if you did the Tetracycline and Biaxen would have taken care of it." I trusted him and while I asked a lot of questions he always had a confident answer. Asking questions isn't enough.

The LLMD I'd seen for 7 years was wrong.

I began antimalarial treatments for Babesia. Some of them didn't work and then suddenly I used a different drug for Babesia and a couple symptoms drastically improved within a month. My blood testing came back positive for a variety of infections that were left untreated -- most of these tests were done by just a regular lab. Quest. No one had bothered running the right tests, including my prior LLMD! He was right about one thing, I had a serious case of Lyme that was resisting treatment but I also had Bartonella, Babesia, Rocky Mountain Spotted Fever (which did respond to the Tetracycline), as well as Mycoplasma, S Chartarumi, excessive hypercortisolism and chronic heavy metal toxicity.

So I now have some "credible" tests identifying many problems. Some diagnosis are still clinical too though, but they're open for constant discussion even as I explore the treatments.

So what's the point? Even LLMD's need to be challenged and your care is "always" up for discussion and evaluation no matter how confident anyone is. If another patient is very coherent and clear about a differing point of view, not only should you discuss it with your doctor but you should research it yourself and not be persuaded away from investigating just because your LLMD seems trustworthy and confident. Nor should you avoid advice from other patients. Just because other patients are giving you info over the internet and they lack a degree in medicine doesn't mean they're wrong. Discernment is needed, not assumptions.

So, keep it simple like JR, and you might get well. Keep it simple like I did, and you might just waste 7 years.

My recommendation for all patients is to always read Dr. Burrscano's guidelines. Lyme Disease and associated problems are complex. You must remain open minded and vigilant in processing any information you uncover, even if it seems absurd. If your LLMD isn't utilizing Dr. Burrascano's methods and running thorough testing -- or at least staying up to date on what the latest and newest treatments and testing methods are for "all" tick born infectious diseases, then you should be very cautious and skeptical. Find out who the LLMD's are that show the best results for the most patients and try to see the best one you can given your capabilities.
 

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Posted by Gahagan (Member # 21194) on :
 
Learning what I can on my own gives me a sense of empowerment.
 

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Posted by seekhelp (Member # 15067) on :
 
Metallic Blue hit the nail on the head. Buy the best LLMD possible for your team your finances can buy. That's my plan moving forward. As WC said, there really are probably 5-`10 in the country worth the money.
 

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Posted by Hopeful2010 (Member # 22958) on :
 
This disease is so complicated, even if you do figure out which co-infections you have. It can effect every system in your body. One doctor can not provide you with all the information you need for such a complicated problem even if he is a complete genius. There simply is not enough time in a visit to cover everything. That is why this website is so helpful because we can find other people that have experienced what we have and maybe they solved the problem you are trying to solve. That's why you see post's like: green thing growing out of toe, anyone else?
 

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Posted by O2Btickfree2 (Member # 9742) on :
 
For one thing Doctors dont seem to have a lot of time period. If people are like me i ask questions but something new comes up before i go to see the doc. Given the hassle we get from docs period i for one want to see if what im experiancing is a common thing lymies have or just me. I dont want to sound like a complaining person.

Seems when i get home from doctor and i look up info i have more questions unfortunatly i wont see the doc in a while. Mine is avalible. But i want to not be someone who is bugging my doctor for trivial information.

Plus i think its encouraging to hear your not the only one dealing with these weird symptoms.

I wouldnt even have been treated for lyme had this sight not been avalible when i was first looking for what was wrong. So im glad its here and such great people who are willing to share there lives.
 

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Posted by D Bergy (Member # 9984) on :
 
90% of doctors aren't worth a warm bucket of spit, so unless you have one of the 10% that really have a good grasp of your situation, your in trouble.

This forum can save you a lot of grief, if things are not going along as they should.

Dan
 

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Posted by seekhelp (Member # 15067) on :
 
Yep, a good doc would treat the patient specifically, run all appropriate tests, consider other diagnoses. I personally feel most docs, including most LLMDs are too time strapped to be exceptional. Also, your office is only as good as their staff so they need to be highly educated too.

In my all years of seeing a doc, I never met one who I really felt portrayed any sense of compassion towards the patient. That said, sidestep them, educate yourself and love thyself. From all tetimonials I've read on the forum, I believe Dr. H in NY is the bees knees of LLMDs with his testing, breadth of treatment, and knowledge. I'm not a patient, but just my opinion. If he gets a Bionic 880, WOW!
 

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Posted by METALLlC BLUE (Member # 6628) on :
 
I see him. Honestly, I don't think he gets it entirely. He's no Burrscano. Aggressive, yes. Utilizes treatments outside the box, you bet. Gets results, definitely.

I believe that what drives him in his pursuit of excellence is the complexity of treating cases which others either fear treating or simply don't have the experience to treat. I think he sees puzzles to solve. If he can't figure out the puzzle, then there isn't a puzzle to solve and it's the patient which is the problem. He implied -- during my last visit with him -- that my "mental" health is why I'm not seeing results in recovery. My mental health isn't perfect given I have Lyme but it's definitely not my attitude or "emotions" causing me to remain ill. I know this for a fact given I've responded very well in the past to Tetracycline and other medications. The problem is I can never seem to get beyond a certain mark before falling ill again. Also I responded to Bactrim. I couldn't stay on it though.

That's not a mental health problem, that's an issue with not receiving the right antimicrobial therapy that I can actually tolerate. Not my fault, at all.

That's my opinion. I'd still recommend him inspite of his shortcomings but I sure as hell would make sure to also tell anyone who I recommended to go in educated, record notes/tape, and to not allow themselves to be intimidated, even if they feel it while in the appointment.

At first I thought it was a personality conflict that I possibly had some part in, but now I realize it's not me, it's him. I've been told he had Lyme Disease by another patient. I wouldn't be surprised.

The only physician I know of to be the pinnacle of success -- with no obvious shortcomings -- is Dr. J. Unfortunate for me that I'm 31 and not 13.

[ 12-27-2009, 11:15 PM: Message edited by: sixgoofykids ]
 

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Posted by seekhelp (Member # 15067) on :
 
Sadly, the shortcoming for the patients of Dr. J is he's under fire constantly, in court, and I'd be doubtful how long an 80+ yr is going to practive medicine! It sure sounds like what he's achieved is more than stupendous.
 

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Posted by Hoosiers51 (Member # 15759) on :
 
Sometimes you just want to hear other people's experiences, from their own point of view.

The LLMD's can advise you, but they can't tell you what it feels like, unless they had Lyme. Even if they did, not everyone responds the same.

That's why you often see questions like, "Is X normal?" or "Anyone ever had X symptom?"

People want advice from people who have been through it.

Also, your doctor doesn't often tell you in exact terms how often a certain drug helps people. They just tell you what they think you should take. It is natural to want to know how other people are doing on the same drugs you are on....to give it a more person-to-person feel.

Even if your doctor does say, "Mepron works for about 70% of my patients," it is nice to hear from some of those people....to see how they felt when they were herxing, how they knew when it was time to go off it, what is "normal" and what's not, etc.

Sometimes patients can answer those questions better than doctors, because those questions are based on how something felt from the perspective of the person going through it.
 

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Posted by farraday (Member # 21494) on :
 
I have three doctors. One is a pain specialist who sees me most frequently (about 6 weeks). One is a psychiatrist who sees me several times a year. And one is a LLMD who sees me every two to three months. All of them get all of my test results and know what meds I take.

I delivered Dr. B's protocol to all three. My LLMD works with him so he knew it very well. He said it was good but a bit too tough for me at my age and condition to handle so he would soft pedal it.

My pain doc grabbed it and said thank you so very much. I need to learn as much as I can to help others patients as well as you! She is on board with my LLMD.

My psychiatrist has seen me for many years. She adjusts my sleep and mood stabilizers and is also on board with the other two docs.

And then my husband helps. His scientific background allows him to read articles that I cannot. He watches me day after day and observes how I am. He attends every doctor visit with me.

We both read the posts here and learn an incredible amount! This is a wonderful resource and one would be foolish to miss out on it. We are ultimately responsible for our own health and must participate actively in getting well again.

My brother and nephews are all doctors, specialists and highly trained. None of them has any idea how to diagnose or treat Lyme and probably could care less. They are stone age doctors...good at what they can do, but very limited and unimaginative. My cousin and I are both ill with Lyme but are definitely not supported by them.

Mom died of ALS. So did another cousin. We think she may have had undiagnosed Lyme that went untreated. I have many of her symptoms and have been told I am prone to get it...by doctors who had no idea of my history.

She had the attitude that the doctor knows best and she followed him blindly. I refuse to do that! And I absolutely refuse to get ALS!!!
 

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Posted by ninjaphire (Member # 18234) on :
 

quote:

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Originally posted by seekhelp:
LLMD's office charges $1+ per minute.

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Where can I find your LLMD, and how hard do you think it will be to kidnap him ?

Mine charges quite a bit more.
 

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Posted by seekhelp (Member # 15067) on :
 
lol. Good one.
 

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Posted by sixgoofykids (Member # 11141) on :
 

quote:

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Originally posted by seekhelp:
If he gets a Bionic 880, WOW! [/QB]

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quote:

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They have their limitations because 7 or 10 years of study, plus 20-30 years of experience is just too little to cover what lyme or many chronic diseases are.

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How many chronic diseases can our medicine cure for sure? Not a SINGLE ONE!!!!

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