I just got a registered letter yesterday, that stated I'm being terminated from my well known LLMD's practice as he's "out of options for me".
Both medical and supplemental.
So I'm fired as his patient
I think its because of my colon issues since the summer.
ANd my many desperate calls to them, made them think I'm a nuisance!
I wouldn't have called if I would have been stable!
I've made an appointment to another LLMD Pysician assistant,- that appointment is at end of November- but I'm afraid he won't treat me because of my colon inflamation.
My anxiety is soaring through the roof.
What should I do? I'm panicking!
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
If you are having colon issues, read the recent thread posted by bcb1200 about parasites.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My lyme doctor suggests a good homeopath to get the colon and immune system strong. Then, resume treatment.
I think that is good advice. It should help you a lot.
If you start right away, you may be well enough to resume treatment by the end of Nov. or shortly thereafter.
Sometimes these things are blessings in disguise!
I got a shock like this once and it was the best thing that ever happened to me lyme-wise. I moved on to a doctor who got rid of all of my diseases for me!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
My first LLMD also let me go. It's a shock when this happens! I agree with the others though..it may be a blessing in disguise.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
It happened to me, and I believe that it was the same doc. I was devastated!
Yes, clearly you need to first get your colon in shape in order to withstand treatment.
That's very interesting, TF, that a homeopath can fix that problem
Talktel, PM me, if you like, since I've been there with the very same doc. It's terrible!
Posts: 3771 | From around | Registered: Mar 2008
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posted
I don't understand how you guys can just move onto another dr so easy. I just lost my dr because they came in and shut him down for treating it long term and now I can't find another that I can afford to go to. Can't e even find one in this state. sick
Posts: 538 | From Iowa | Registered: Apr 2006
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posted
It's better that he admits your beyond his scope than to keep treating you and never get you well. I'd do what TF said and find a homeopath or another natural type doctor to get your gut healed. You'd be shocked how much healing the gut will do for you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I think that it wasn't beyond his scope to treat me. I think there were still options.
I know he and his PA were annoyed at my phone calls when I was in crisis mode, and now they want to wash their hands off me because "their options" should be distanced from a colon inflamation.
I do not blame them at all for the colon inflammation.
I need those abx. I do better with them.
But they turned very nasty when I got that problem, instead of working with me.
He practices integrative medicine, I'm sure he could have come up with something to help the colon and treat the Lyme.
How do I find a good and affordable homeopath to get my gut healed?
and can it get healed?
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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posted
I healed my gut and at one point I was on an a mostly liquid diet due to my gut problems. So yes, it's not easy, and it takes a long time, but it can (and has to be) done.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I've heard of this happening to other patients (very sad). The lyme docs simply don't have time for patients who call them constantly, even though your reasons seemed valid. It's a sad fact that if they dealt with phone calls or emails all day, they would never have time to see patients (that's what my PCP told me).
So we are left with going to the ER for emergency stuff, or seeking other docs. But the next doc can do the same thing. They simply don't have the time. I think we all need back up plans (alternative docs).
All doctors are being pinched with time. There are too few of them and too many of us. Joining a local lyme group (yahoo) is a good way to find an affordable homeopath.
Don't forget about what Gael said above. I believe parasites are at the heart of all lyme patients' problems.
-------------------- --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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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Many of us have been in the same situation, in some form or another.
I know how it feels to go to an expert LLMD, but keep getting sicker and sicker.
Please take the others' advice and work on healing the gut.
I agree with TF. Even though you were seeing a well-known LLMD, he/she may never have gotten you well. This is a blessing in disguise.
posted
I wish my first llmd did this for me. Instead I wasted a year there doing nothing. Of course you wish you could do it on your terms, and I'm sorry it took you by surprise, but it may be just what you need. Good luck, everyone here supports you Posts: 169 | From The Poconos | Registered: Jun 2011
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posted
I do the same thing, I dont call my LLMD unless its an absolute problem, only for refills, etc. Been seeing him for a year now. Need to call him and let him know I've been off of abx for a few weeks since the biaxin shot up my stomach. Its much better now and am doing the Cowden protocol. So far ok, but had like a mild herx, all over slight pain, chills, etc. My only issue is the constant low grade fever and fatigue that comes and goes which is why I was still on abx, had stopped for 21 days but it all came back with a vengeance, severe fatigue, so we know its mycoplasma.
Repair your gut as much as possible, do Cowden, parasites, etc.
Posts: 532 | From Texas | Registered: Oct 2004
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I understand the fear you must feel. I would be very distraught if my doc sent me a letter like that.
I also agree with what everyone says, about healing the gut. I am now doing this and the pieces are coming together. It doesn't even make sense to do liver detox if your gut is not healed.
I accidentally came across a book that I find outlines in understandable terms what we need to do to get our bodies back.
The book is "Lessons from the miracle doctors". Here is a link to give you a general idea of the basics. I don't even take that many supplements other than enzymes and probiotics. I'm focusing on food and keep my body in the proper ph.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It may seem like a shock & trigger feelings of abandonment but it might be better in the long run for you. I can't believe that doctors do this but what can you do?
There's really alot of things you can do on your own. It takes time to study but I think it's worth it. If your intestines need to heal - it just takes time.
I never had a big intestinal problem but the anti-parasite protocols are helpful. You can do the herbal ones on your own while you are looking for another doctor.
You would think that your original doctor would have tried to help since they are probably why you may have intestinal issues to begin with (if it's from taking abx). You will just have to try to do it yourself. There's alot of help & support here & you can study things on the internet.
No need to get all stressed out about it. It happens & it's not your fault. If you got the proper help that you needed, you probably wouldn't have had to call their office so often. I'm just making assumptions here - but I don't think I'm too far from the truth. If not - please correct me.
In any case, getting stressed out about it will not help your health any.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
My NY LLMD gave up on me too and suggested I go see a chinese herbal doctor...
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
I was told, by the big LLMD in NY state "I am sorry, I don't think there is anything more we can do for you" simply because I did not like the fact that they kept wanting to change treatments every monthly visit when something did not work quickly enough for them.
In any case, I was finally able to stick to the routine that worked for me by seeing the wonderful PA; eventually I found a local doc who was willing to work with me & prescribe for me and I was able to stop driving to NY state, which relieved me of a lot of stress.
And I got better. It took many many years. The 2 years I spent going to NY made a huge difference; reading everything here helps tremendously. Reading the most recommended books helps. Sorting out what you think applies to you at any given time is your job.
Over the months/years, one problem gets sorted out and I come back here and focus on another. If you are very ill, this will not be a quick fix, but there are lots of things you can do for yourself, reading the tons of advice you will find here.
Unfortunately, I did need antibiotics and there is only one way to get those .... but you may be able to find a sympathetic regular doc by asking around. I did, others have. So try not to panic, you have some meds for now, take a breather, and try to trust that things will work out and things do happen for a reason.
BTW, the Buhner herbs seemed to work for me when I tried them, but it is a lot of pills to swallow.
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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I called my regular PCP today (who is lyme literate) to tell him that I got fired and if he would pinch hit until I get to the PA at the end of November.
He agreed to do that- which is unusual because he usually has no time.
He is the only lyme literate pcp around but he doesn't actively treat lyme.
He does have several Lyme patients in his practice.
He just called me back and said if I have a problem he'll take care of it util I get to the PA in November.
He told me now that he had left messages for the LLMD to call him in regard to my gut issues, and never got a call back.
Yes, I am very ill, and I have many Lyme related issues -and now colon issues.
I see I have a bottle of Samento in my cabinet that is unopened. So it should still be good.
Should I put myself on that until I get to the PA along with the bicillin?
I'm concerned about taking things when not under a doc's auspices.
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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posted
My osteopath made me sign a new patient contract saying I wouldn't bother him with nusance calls and if my visit went over an hour I would be charged extra.
He has a 9 month waiting list of new patients. Any emergencies are for the ER, other complaints are for my GP and I have a gastroenterologist for gut issues. I just started with an ALS pulmonolgist for breathing problems.
It takes a team of docs for a lyme patient.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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Yup, it takes a team of doctors for a Lyme patient.
And Hilary Clinton didn't even get to coin that one!
I want to call my gastro doc tomorrow to see if there are any meds for the colon that are not immune suppressing or steroids.
My PCP says that there are some safe meds. I should call the gastro doc tomorrow.
I know that the PA that I'm planning to see works in a center that practices alternative medicine. They treat colitis.
I'll give them a call tomorrow.
If not, I need a gastro in the NY area who is Lyme literate.
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Right on Talktel. I think alternative medicine is wonderful. You might want to just do herbs in the interim (give your colon a break). I'm just on herbs and malarone and feel better than I did on abx.
-------------------- --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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lymeboy
Unregistered
posted
I'm so sorry for having such a quick dismissive answer in my previous post. I am sure I'd be freaking out if I got such a letter from my LLMD. I can't even imagine the stress that brought on for you.
I guess my point is that I spent loads of time and money with docs who weren't going to get me well, but had no problems collecting my cash. So this could be a good thing for you. You definitely haven't found the right doc yet. And perhaps you haven't hit on a method of TX that works for you.
I'd do a lot of research before jumping to the next doc. Finding the right doc is one of the most important factors in treating properly.
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
RE - I spent loads of time and money with docs who weren't going to get me well, but had no problems collecting my cash
---
I can agree with that! It takes a bit of time to change prescpective on these things. I hope you will eventually feel more empowered to make some decisions that will improve your health over time.
The doctors just don't know how to help people so they feel that it's their perogative to shift the blame onto us. We are actually their employers...
It's an awful illness (or constellation of illnesses). I don't think anyone knows the answer. It's all trial & error. I just wish some of these physicians would have the b-lls to own up to the fact that they don't have the answers & stop charging us such outrageous fees.
Not all are bad but I do see alot of stuff here that should not be the norm of treatment for this or any illness. There are alot of alternatives to use in the meantime between doctors. They may not be a cure but they can help -
Some popular ones are the Cowden protocol, Stephen Buhner's books, Rife Machines, Dr. Zhang's herbs...
posted
Hi Talktel, I know how it feels to be fired from a doctor! It's horrible at the time, but for us it was the best thing to happen. Things are falling in place already for you! TRY NOT to stress about it if you can. It took me a long time to realize it was for the best. I was fired by my daughter's GI! So glad because it ended up being parasites and LYME that they did not find, or even check for via colonoscopy!
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
So sorry to hear that you are put in this position.
The whole idea of being "fired" by a doctor baffles me.
They are not paying us, we are paying them for a service so if anything, they work for us.
He or she decided to "quit" working for you and did so in a very unprofessional manner.
If your LLMD felt he or she could no longer work with you/help you then they should have told you in a face to face converstation - not in the form of a..oh by the way..letter.
Abandoning a patient? Where did your LLMD refer you to?
It is just a horrible thing to feel like we, the paying consumer, are the ones being "fired" by the doctor that we actual hire to help us. Messed up...
I hope that you are able to find another LLMD or ANY doctor that can help and guide you towards health...
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
I have a slightly different opinion on this situation.
If the doctor feels that he can't effectively treat you, for any reason, then he has a professional and ethical responsibility to terminate his role as your doctor. That would even include a personality conflict from him thinking that you are a nuisance due to too many calls.
I only wish more doctors would have the integrity to admit that they aren't being effective and tell their patients that they need to move on!!! In my case, that might have saved me 20 years of suffering with lyme, including 10 years after my initial diagnosis. It would have certainly saved me THOUSANDS of dollars of money wasted on specialists that weren't being effective!
I am currently trying to decide whether I am going to "fire" the physicians group that I have seen for the past 30 years. Is that fair to them? You bet it is! It's not called the doctor-patient relationship for nothing! When one side isn't holding up their side of the relationship, it's time to move on!
Posts: 177 | From Ohio | Registered: Aug 2012
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A patient should have the right to fire the docs if he/she wants. But can docs fire a patient because patient hit a rough spot and still needs care-if not more so?
I wasn't upset with them about the colon issue!
I thought they would work with me and try to get it healed, especially if they practice integrative medicine.
But I guess they have the option of laods of patients, and wanted to get rid of me.
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
No matter which way you see it, it just is not ethical to just dump a patient like that!
I agree if a doctor can no longer help you then he/she should refer you elsewhere - does not sound like that is what happened.
Most states PROTECT the patient from being medically abandoned from the doctor - even if the doctor cannot help the patient anymore they are still obligated to refer to another doctor - or at least the insurance company for a referal.
I know in your case that would do you no good - I am just trying to say that if he felt he could no longer help you then he should have discharged you in a different manner - face to face with some direction as to where to go.
It is sad to hear of you story and I am very sorry that this happened to you....
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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quote:Originally posted by Talktel: A patient should have the right to fire the docs if he/she wants. But can docs fire a patient because patient hit a rough spot and still needs care-if not more so?
In reality, the doctor works for the patient. So, no, technically the doctor can't "fire" the patient, but they can certainly say that they don't want to work for the patient.
You said in your last post that you always found the doctor to be obnoxious and arrogant. You also said that the PA was nasty during your last phone consult. Why would you want them to treat you?
The other thing that you may need to self-evaluate is whether you were a nuisance to them, and if so, how can you function differently with your next doctor/pa? Only you can answer that question, but you did say in one of your posts that you made many desperate calls to them. What caused you to make so many calls and what made them desperate? What could you have done instead instead of making so many desperate calls to the doctor? Maybe you could discuss how to handle issues that come up with your new doctor so you'll know what they expect.
Remember that doctors are in business to make money. If one patient is taking up an inordinate amount of time or resources, that cuts into the bottom line and disrupts their practice.
Posts: 177 | From Ohio | Registered: Aug 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I don't think any one doctor has all the answers. And that is partly because all the answers are not known.
So, take what a doctor can offer, and then find one that will go the next step, and so on. This is an individual thing, and it is probably not possible for the doctor to figure out who would help you next and suit you personally. It is hard for a patient to do this too, but really that is your assignment now.
You would not want to go to a doctor where you were unwelcome, would you? And unwelcome can just as easily be from lack of further ideas on treatment, as from too many phone calls.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I agree with the above, especially since you were there for so long. If you haven't been getting better after being there for 5 years, you're probably not going to get better with them.
This is a blessing in disguise. It's time to start from scratch and get better using a different approach!
Everyone here is pulling for you!
Posts: 169 | From The Poconos | Registered: Jun 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
These lyme docs simply cannot cover the whole body all the time. Not even our PCPs can (they farm patients out to specialty docs all the time). The lyme docs especially just don't have the time.
That said, I agree with TF, Pony and others. Moving on can be a blessing in disguise.
Sure, this doc knows tons about lyme, but he doesn't know everything. I for one would love to see more docs incorporate at least some of Dr. K's treatment/ideas, in addition to their own protocols. Homeopaths, chiropractors, acupuncturists, etc., can all help us where our docs fall short.
The reality is, people on this board know tons about lyme and everything else that ails them. We are so fortunate to have lymenet. Talktel, hang in there. You will find the right doc for you. :)
-------------------- --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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I just made an appointment to a Lyme lierate GI doc for this coming Monday.
Was that ok? I know nothing about him.
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's tricky with all of this... We don't know how effective a doctor is until we've paid to see them. It used to be that you could interview the doctor prior to paying for a visit. Maybe you could ask him/her some questions on the phone prior to paying for a visit?
We have to be assertive at times. It's difficult since doctors are such a high priced commodity but we should really make sure they are on the same level with us before we give them so much cash.
It comes down to the Latin "Buyer beware..." phrase. If I was buying a used car - I'd check it out before laying out thousands of dollars.
The other option is to withhold payment until after you decide if the doctor is worth it. If you don't like him, don't pay... I don't know how ethical this is but it has crossed my mind in regards to treatment. I don't know how ethical the doctors are if they do all the things I read about here...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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lymeboy
Unregistered
posted
This could be part of the problem right here.
Personally, I would do some research before going. Talk to former patients if possible.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Talktel,
You say that you "just made an appointment to a Lyme lierate GI doc for this coming Monday.
Was that ok? I know nothing about him." (end quote)
----------------
No, it is not "okay" to schedule an appointment with any doctor that you "know nothing about."
Where did you find out that he or she is "lyme literate"? Go back to that source and find out more.
Ask your local, area and state lyme support groups.
Has his office verified that he is familiar with ILADS?
Can his office direct you to any articles he may have written - or a book or two that he recommends to everyone? This will tell you more about his thought process.
Have you started a gluten-free diet so you may see if your stomach improves from that action? Many LLMDs strong suggest their patients go gluten-free.
Ditto for Dairy and Casein. Avoiding that category often solves stomach trouble.
Have you been able to drop all food additives? That often helps, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
He takes my insurance, so I don't have to pay, as I don't have a co-pay on my insurance.
He's published, and is known for being a Lyme literate GI doc who specializes in pediatrics.
I think I may have heard his name in the past once or twice.
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, then it sounds like you do know some things about him. Read all he has published. Still, ask others who may have seen him and get a cross section view of their experiences.
Backing up, you say that he is "known for being a Lyme literate GI doc who specializes in pediatrics." (end quote)
Known by whom? What are his affiliations?
Many IDSA ID doctors are "known" to know about lyme, too. But they do not.
Be sure he is ILADS "familiar" at the very least. After you read what he's published, it may be clearer as to if he's really lyme literate or not. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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He's definitely a Lyme literate doc with great credentials.
He's an expert with Lyme and tick borne infections and has spoken at a 2012 columbia University Lyme conference from their research center
I wish I can post about him here. I don't how to attach those documents.
He was director of gastroentorology in a well know medical center in NJ.
I wish I can give his name to the public. First inital is M. last initial is F.
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, Good. At first, you said you knew nothing about him and it's never good to walk into a cold appointment.
What you post now looks good. It's just that some doctors will say they know all about lyme but they do not. Glad you could find out more about him. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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