desertwind
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posted
beaches; Sorry to hear your experience was much different then mine. Someone's "best" llmd could be the next persons "worse". While he did help me I can certainly see how his approach may not work for everyone. Best DW
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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map1131
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Wow old thread....I wish I could turn back time. I would have made an appt. with the best in US from the onset.
Money to fly and for hotel room etc would have been worth every dime, if a LLMD could have turned my illness around.
But I can't turn back time. I do know that the journey does serve a purpose in my life. What I thought was going to be my life, wasn't close to the journey that I've endured.
But I've truly been blessed along the way. I've had many angels from day 10. I've had 15 years of great healers and people, the rest of my angels that have become part of my journey.
So I'm just thankful for blessings.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6489 | From Louisville, Ky | Registered: Jan 2002
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posted
I'm with beaches, unfortunately. Polar opposite experience is all I'll say as well, I don't want to get in trouble for saying too much, but it was a horrible experience. Very disappointing. The "best" isn't the best for everyone. We're all so different.
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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map1131
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That we are. For sure! It is not understood exactly why.
A very smart LLMD told me 10 yrs ago... until they get to the very cellular level of what truly happens with these bacteria(s), will they even begin to find the cure for all.
Not just 75-90% that the numbers say are "cured" or go into remission.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6489 | From Louisville, Ky | Registered: Jan 2002
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posted
Add me to the list beaches and skies are on...
Sooooo overrated and disappointing
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beaches
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A top-notch doctor treats his/her patients with respect and dignity. A top-notch doctor does not yell at his patients. A top-notch doctor does not have a very ill person take 60 pills a day--all at max doses.
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Abxnomore
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It's way more than that. He has to understand the illness on every level, leave no stone unturned and use aggressive protocols that attack all forms of the spirochete. Every issue must be addressed, not just the spirochete and he has to be current and willing to work outside the box. Supplements and herb play a big role for many in recovery.
It's about bringing the entire body back to homeostasis.
Most LLMD's are not doing the above.
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randibear
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posted
Beaches, so true so true. A good llmd does not yell at his patients, does not say cruel things, etc.
They're kind, courteous and above all understanding.
Ive been to some real lemons and several times ive left offices completely in tears.
Good ones are hard to come by.
One dr told me as I was leaving, in front of other patients no less, "well I never thought you were sick in the first place". How unprofessional and downright rude....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
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posted
- A Top Notch LLMD or LL ND would also be familiar with all presenters and topics on the "radar" currently -- and continue to be active in educational opportunities.
Thanks to Tincup who just posted this in another thread. Some excellent presentations for our continuing education. Most are ILADS "minded" as is to the benefit of those seeking truth.
Re: the link for "Infectious Disease and CME Conferences" -- an important list but not limited to ILADS educated professionals -- and not limited to lyme or TBD, still relevant topics.
A top notch LLMD or LL ND would know who is truly lyme educated and who is not. They would know what pieces of wisdom might be able to be extracted from anyone in any connected topic, though, and also what pieces are to be challenged or may not apply to those with lyme / TBD. -
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beaches
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Keebler, I can guarantee you there's at least one "top-notch" famous LLMD who has authored a book and has done exactly what I stated above.
My kids are now seeing a great doctor who has gotten them to a much higher level of functioning (attending school, driving, going out, doing errands and light chores and even exercising sometimes) than any of the other 4, yes 4! LLMDs they've collectively been to. They still have a long way to go, but seeing progress has been wonderful after seeing them suffer so much for so long.
The difference with this guy is that he truly listens, he thinks outside the box, he has an actual dialogue with me, he asks my children excellent questions and he keeps up with current research. He is very respectful.
He understands that eventhough I am not a medical professional, I do my homework and have acquired a vast amount of knowledge over the years. This is quite a big difference from a famous LLMD who admonished me by saying "be quiet mother." Yeah, you don't get to say that to me, a mother of sick kids who is coating your pockets with plenty of money.
Any time I have asked this doc a question, he is aware of what I am referring to (for instance when I mentioned parasites, he mentioned Dr. K.'s protocol and offered his opinion) As a bonus, he has a lovely staff. Not once have I gotten an attitude from any of them, which is quite refreshing, having dealt with "difficult" staff in other offices.
Randi, sorry to hear you've encountered a few lemons yourself. There is just no reason for rude, unprofessional behavior.
Posts: 1885 | From here | Registered: Jul 2012
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posted
Beaches, I hear you loud and clear.. My experience is very similar! Glad you've moved on to someone more respectful that is also helping you and your family. There's no excuse for such arrogant behavior. I don't care who you are and if you're the "best" of the best. Show some respect and compassion for sick patients that are lining your pockets, very thickly, I might add.
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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beaches
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Yes skies! We are on the same page for sure. Thanks and I hope you are on a good path with someone else.
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Abxnomore
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posted
Personal experiences and discussions such as this provide much more usable information for members. We need real conversation and discussion taking place here.
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Keebler
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- beaches,
I'm not sure why my recent posts (book & conference links) seem to conflict with anything you said above. They don't.
I'm simply saying that a top notch LL doctor keeps up with education and has a broad range of vision with the ability to zero on on ALL points that matter.
That tendency / those attributes would not be the only criteria, of course. It's just one consideration of many. The best base of knowledge possible.
I think you are saying that there may be one who others think is top notch, even authored a book but is not really a good doctor (at least to all at all times). That's too bad. And that can happen. Sadly.
So, there are many points to consider as one does research from all points before selecting a doctor and also knows when to turn the ship around and find another one.
Still, when we must turn away for whatever reasons, it's important to grasp what knowledge or insight we might that is helpful in our journey
(whether from conversation, articles or a book -- but also know they likely got detail from others so look to the primary sources, too) . . .
and leave the rest behind as we seek out someone better suited to the vital task ahead in all matters and in a manner fitting someone who really can be called "top notch" for all the right reasons. -
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beaches
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Keebler, I just tried to PM you but I am on your "ignore list"
Anyway, I understand and appreciate what you are saying. I think you're missing my point to an extent, but that's OK.
Like I've said, my kids are on LLMD #5. I will soon see LLMD #4 (after not seeing anyone for a few years). I think I know what to look for and expect in a doctor.
The most important thing of all though is that a patient makes progress in his/her health.
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Keebler
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- Sorry, my PM function is off. But still, some have said they get the "on ignore list" reply.
I think you are saying that just because someone writes a book that does not make them top-notch? If so, true. And / or that even the most brilliant and well educated doctor may not actually be top notch. That can be true, too.
It is sad that even once we all figure out we need someone is is an expert in subspecialty with so few experts, that it still takes a while to find not just a top notch doctor but one who is well suited for the unique challenges of each person.
And disappointments in character, even in staff, can sure hit harder when our hopes and their reputation falter.
? -
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beaches
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Actually, I forgot to include the LLND. So that brings the total docs my kids have seen to 6 and mine to 5!
I promised them when they first got sick that I would get them better if it was the last thing I did and I told myself I would go to the ends of the earth to achieve that goal.
The biggest lesson I've learned is to give a doctor a fair amount of time and give different protocols a chance. My mistake was staying with a couple of them for way too long.
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Keebler
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- Yeah, a lesson I always learn too late . . . when to move on, realize when they don't know all they think they do or all that I need them to know.
I stayed with an otherwise good ND (with an otherwise great reputation) for 5 years because no other choice at that time but also he told me he knew all about lyme.
Turns out he only thought he did and then blamed me for wanting to be ill on some deep level when it turned out he knew nearly nothing about lyme, had not really even addressed it. Just thought basic herbs should do the trick.
At least now, ILADS has an education program that did not exist then. At that time, Google had not even started yet so we did not have the web to search.
"Ya gotta know when to hold 'em, know when to fold 'em . . . "
"The Gambler" (written by Don Schlitz). -
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beaches
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LOL Keebler, good to know I'm not on your ignore list.
And yes, just because a doctor is a famous author and held in high esteem by some as the "expert", doesn't necessarily make him a great doc.
It's unfortunate there are so few docs out there for us. I could tolerate an unpleasant, rude staff if the doctor was excellent and getting my kids better (and how sad that I'd be willing to tolerate that at all!) However, I will never again tolerate a rude, arrogant doctor whose pockets I am lining with very hard-earned money.
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randibear
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posted
Know when to walk away and know when to run....
Yeah ive run fro some toooo
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Keebler .. you might want to open your PM's and send one to beaches or skies .. or to me.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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beaches
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Keebler, so sorry to hear about your experience with that LLND. How awful for him to blame you for your own illness.
I think some do that to hide their own inadequacies from themselves....they don't know, so it's easier to just blame the patient.
I think it's great that ILADS has that program. We've actually met a couple of the docs who were doing preceptorships. I hope they can continue this program.
And goodness yes, what would we do without google? It gives us all a great opportunity to do research for ourselves.
"Ya gotta know when to hold 'em, know when to fold 'em . . . " So true!
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Keebler
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- He was not an LL ND after all, just a regular ND who vastly overstated his ability. And that is why I try so hard to help others avoid the same situation . . . and to share the best from the naturopathic world as it specifically can apply (and where it can't) to those with TBD.
Yes, indeed, so glad to have ILADS, the web and LymeNet . . . and all who help make this a strong component in our education since it's been dropped right into our laps to figure out so much on our own.
I have learned so much here from others so willing to share their experiences and links to articles, books, lectures, etc. -
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posted
And keep in mind that we DO HAVE good LLMD's who are NOT members of ILADS.
Some prefer to fly under the radar.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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beaches
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This is true LT.
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nefferdun
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Here i am having just seen my 4th LLMD/ND yesterday. I am cautiously optimistic. However I do not believe she/he has all the answers. I believe I need to find the answers. It would be wonderful to be proven wrong.
This one agreed with my diagnosis and treatment, just like 3 of the last ones did. After spending 7K to confirm my diagnosis, I am taking the same drug I ordered from India two weeks ago. In addition I am taking a huge amount of supplements. I thought I had the right supplements. Maybe I was missing something. It depends on which expert you are talking to.
For instance, the published LLMD, Dr. S, says boluoke does not work on biofilm because bioriflm is not a protein. The expert Dr. K says Cistus is the most powerful biofilm buster. I was on boluoke for two years until Sept 2013 when my blood showed "substantial biofilm". I am on it again but this time taking more of it more often. At $154 a bottle, I will give it a month. I am going to follow this exactly as directed and see what happens.
I will also take MY protocol, which is cistus, liposomal EDTA, Lipo vitamin C and glutathione, proactol and methyl cycle supplements. Why in the world are doctors still handing out tinctures and pills when everything can be made 1000 times more effective with liposomal technology?
This LLNP gave me N Acetyl Cysteine, which I am not supposed to be taking - being homozygous for CBS. I found it in the bag and shelved it for the time being. I was also given melatonin, which quit working for me years ago and gives me headaches but maybe this time will be different. And I was given L theanine, which I tried before and it made me nervous. Maybe this time, it won't.
As far as these doctor discovering anything - I knew when I had bartonella and suggested my own treatment. Same thing with babesia. When things did not work, I went to the GP and told him what I needed. I got better. I got worse. I told the GP to test me for PR and I was positive. I took horse wormer, started the diet and got better. I can't see GP any more as he is now a marijuana doctor. I ordered my own methyl cycle mutations test and had it analyzed. I requested heavy metals and environmental testing.
Dr. H by the way has very little to say about protomyxzoa. If PR is real, that is a very big stone he is not willing to turn over. Even if he wanted to address it, he can't because the state he lives in will not allow testing at that lab.
I would like to believe Dr. F is full of it because I don't particularly like him, having traveled thousands of miles to see what I thought was the best, only to be told he would/could not treat me. Even though I would like to believe PR is ridiculous, I have to say it is real. If your Best LLMD is not addressing it, having you tested and putting you on the diet, you won't get well.
I believe that WE are the ones getting each other well, more so than any doctor. I found out what and how much to take from kind people trying to help me on this site. i learned about everything here. I shared everything I know with you. We are the cutting edge of lyme research. We pick the brains of all the best doctors and share the information. We decide what works and what doesn't.
It would be heavenly to find "the guru of lyme", the one I can completely trust to get me well. I have struggled and worked so long and so hard, trying to keep on top of things with half a brain.
I am still trying to be optimistic.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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beaches
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nefferdun, that was an excellent post!
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Keebler
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- Still, a top notch LLMD would know the science of lyme, the detail that the ILADS researchers / presenters are talking about., even if not a member.
It's hard to say exactly what is meant by "ILADS educated" but I will try. Going through the ILADS physician training program is great, of course. But there is more to it.
Being ILADS "educated" is not an exact check list but that they have that scope -- they may not need to be a member or up front at meetings -- just backed up with the basics and up to date with as much knowledge as possible.
The education level is so very important. It can't have stopped when they graduated from medical college (as they barely get any lyme education there).
That knowledge about lyme / TBD can't be built on the CDC or IDSA or NIH, either.
It's also about knowing that every person with lyme is unique and they likely have far more going on than just lyme, far more. But no two are alike yet so much can be learned from all of their patients, and the group as a whole for what they face, etc.
just my take on it. I've never had access to a LL doctor for more than two visits, though from what I've read, ILADS conference presentations veiwed and what I need in a doctor (if I could afford one) . . . just my thoughts.
Respect for each patient and really being willing to "go there" with them, whatever it takes, how ever many changes or how much thought for what ELSE might work . . . through all this, should also be at the top. Can't have a good doctor without that. -
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beaches
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Well hopefully no doctor's education stopped once he/she graduated medical school.
I believe the vast majority of LLMDs (ILADS or not) have learned a great deal from their patients (at least the ones whose ears aren't plugged up with their own arrogance).
We are a unique bunch of patients. What other group of patients do you know who have had to take matters into their own hands and demand better testing, appropriate treatment, insurance coverage and legislation? It sure ain't the cancer patients.
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beaches
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Actually, come to think of it, AIDS patients had to do what we're doing now.
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LisaK
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my new llmd takes no insurance for the testing which was about $100. Treatments are around $80 every 18 weeks. That is it.
I rate my new guy a 9.9 compared to the previous one that wanted to put me on steroids, hormones, and everything else under the sun- and I felt terrible when I was with him
Plus he (old guy) listened to me, but HE was the Dr so HE knew best of course and wouldn't really budge from his protocol.
The new guy is insistant too, but the results are in the pudding. .... I am gettting better WAY faster with new dr than the other who was a more traditional LLMD type following what most of them follow.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3588 | From Eastern USA | Registered: Jul 2013
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posted
I agree that the good LLMD's should keep up with conferences and education. You can attend conferences without being a member!!!
A "good" LLMD is just that .. someone who learns from his/her patients and other doctors and is very educated on treating Lyme and coinfections.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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nefferdun
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Thanks beaches.
There is no argument about the benefits of seeing an ILADS educated doctor versus mainstream but Lyme treatment is not standard even among LLMDs. They have different opinions and different methods.
That is why it is important for us to keep up with the latest information. For instance, many of us have spent hundreds of dollars on methyl cycle mutation testing and analysis. This stuff is hard to understand.
When you hand your new LLMD your methylation results, he probably does not even look at it because it is too difficult for even him to grasp. He just hands you his recipe supplements for success without any regard for what your body needs or can tolerate.
I need a test and I need drugs so I am not going to argue. I just shelf the stuff I know I can't tolerate and continue to take what I know I can.
Most of us have a library of books on Lyme Disease. I sure do. Even these doctors that are supposed to be the best bash each other's theories and treatments.
Have you read Dr. S' book on bartonella? No one but him knows how to treat bart. It is a secret he does not share. You must go to see him. If you want you can pay $500 for a conference call but he won't tell you the secret because he can't advise you about drugs on the telephone. From what I have gathered from other's who paid for that call, HH2 in massive doses will help but the cure is sill his treasure and you need to see him personally for that.
Sure you should see the best LLMD you can afford but should you send yourself and your family into a financial crisis seeking that doctor when chances are it won't be the first one you visit? Sometimes you have to read and study and then trust your own intellect and gut to make the right decision for yourself.
Is there really a LLMD guru that leads all the others in the field, that cares mores, is better educated and up to date on every single aspect of all the latest technology and treatment? If there is, you and I won't be able to see him because when the word gets out there will be hundreds of thousands of people in line waiting to see him.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lax mom
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quote:Originally posted by Abxnomore: Too bad there's only about three of them in the whole country, all unaffordable for most. And even with the best their success rate is still not that high.
Case in point. A counterpoint did not hinder the flow of the thread Abxnomore. It just added to the conversation.
posted
A money-back guarantee!
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lax mom
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Well, if you scroll back to the first page, you will read the story of "aperture".
That is me.
The top notch Dr H saved my husband's life. An LLMD brought my little son back from autism traits to typically developing.
My family has truly lost EVERYTHING to treat with the best. I wouldn't change that for anything. I am so grateful knowing that I do not have to rely on nameless, faceless strangers to give me a protocol that could harm me...or heal me...who knows?
That's why I am so adament about being treated by a the best Dr you can scrape together...not taking advice from a stranger.
I may not have a full set of kitchen chairs, more than 1 outfit, but my husband is healed and my son is well.
Lyme is supposedly the disease for the rich...don't allow it to be...I didn't...even if that meant pawning my wedding rings to get to the best.
I am in the midst of being banned for good...to those who have supported me...Hugs.
Lots of divergent viewpoints. But there are quite a few things no one has brought up.
If I counted correctly hubby saw 11 different docs who would be called LLMD's during his 12 year illness. 3 of those were LLMD neurologists and he also saw the Dr B for awhile. And I am not counting all the alternative and ACAM docs he saw.
Anyway -- one major point that is very important to someone considering traveling to see an LLMD -- there are many restrictions placed on docs who see out of state patients.
Some docs will not prescribe meds over the phone -- every new med requires an in person office visit. That can become cost prohibitive if the patient has adverse reactions or intolerable side effects and needs to change meds in between appointments.
Also many of the big name docs have P.A.'s -- while they have training most do NOT have anywhere near the knowledge of the actual doc. And if you only see the big name doc every 3rd appointment or so treatment can get seriously off track.
And almost every doc hubby saw had a list of meds they were unwilling to prescribe due to potential side effects. Hubby had some of the best results with the more problematic meds -- quinine and clindamycin and levaquin and flagyl for example. Unless you know enough to ask -- the doc may not be willing to use all possible meds to try to treat your specific infections.
Someone did mention that Dr H because he is in New York cannot order tests from Fry Lab. But it goes beyond that -- he cannot order tests from Galaxy Lab either. No New York doc can.
Yes there are some labs that are better than others, but without Clongen and Fry bloodslides hubby would have never known he had such a severe babesia infection. And it was 10 years before anyone thought to test for babesia duncani (WA-1).
In my book a good doc will order a test from an unknown lab if the patient requests it and is willing to pay for it as most such tests frequently require payment up front even though eventually insurance may provide partial reimbursement. Tests from new and different labs provide learning opportunities for the doc as well as the patient.
The doc that hubby had the best relationship with both personally and medically was not one of the big name ones. The difference in the doc was that they did not watch the clock. They listened to the patient and were willing to try just about any med.
This doc was the first one who was willing to try malarone in 10 years since we never knew for certain if hubby's previous reaction to mepron was an actual drug allergy.
Not many docs give patients their personal cell phone number or will call hospitalized tickborne persons who are not even their patients. And not many docs will accept payment plans or barter with patients for their fees -- this doc has accepted artwork and even vegetables from patients in the past.
There are still some real compassionate docs who are in it for the patients. This doc probably does not have a super high success rate simply because many of their patients cannot afford the necessary meds or supplements to actually get them well. But the doc has not abandoned them or given up trying.
desertwind
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posted
I also believe that a top notch llmd is willing to look outside of the Lyme box and consider additional conditions that could account for symptoms. My extreme pressure headaches were not all related to Lyme and babs. My llmd knew enough to order an MRI to rule out differential diagnosis. Glad he did because we found a rare and serious brain condition that required numerous surgeries.
A top notch is also open and willing to speak with with other treating doctors so everyone is on the same page. No hiding lyme needed. My current brain surgeon and llmd work together to ensure best treatment.
I appreciate my llmd's assertive presence and see that as reflective of his willingness to speak loud and have a voice in the muffled world of lyme disease. He has always shown humility and compassion in his own sense of humanness. But...he is not the cure all for everyone.
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