posted
Our LLMD gave up on us. My wive had been seeing him for a little over 6 months.
She was perscribed doxy (300 mg a day) for three months. He then switched her to Azythromycin (250 mg a day) for three months.
She has not seen any significant improvement in the 6 months. Maybe a little but not much.
We always wanted a stronger treatment. We think my wife had it at least 7-8 years before treatment, maybe a lot longer.
The doc was always resistant to a more agreesive approach. He always said this slow approach would work.
My wife has been very bad for about the month. After severla calls to him. He told her there was nothing he could do. He has NEVER had this low dosage not work. She should go back to her doctor for other tests. We had been going to "ther doctors" for 7 years of tests.
Her western blot was significant but not at a CDC level. The doc was convinced it was significant when we started.
I have never heard of a doctor giving up on a patient. I read many stories here baout treatment taking years with multiple ABX.
We were not happy with him before this. We have been looking for a new LLMD because we wanted a more aggressive treatment.
I am writing this not to slam the doctor. He is well regarded in the lyme community. I am sure he has helped 1000s of people in his 20+ years in the field. Obviously, he was not a good fit for us.
I JUST NEED TO VENT!
I feel better now
By the way we are researching two new doctors now. One of them is in FL and the other is in LA.
It's funny, the old doc and the tow new one are all about an 8 hour drive for us. Go figure....
We
Posts: 65 | From Georgia | Registered: Oct 2007
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Alv
Unregistered
posted
Dr S in FL is worthit ....to go !
I do not know about her load..but I would have been dead with that dossage ( I have all co-ifenctions ) and if that is the case..you need to address them all at the same time ...no kidding around !
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daise
Unregistered
posted
It sounds like it actually wasn't an LLMD you saw.
Any doctor can call his or herself an LLMD. That doesn't mean they are actually Lyme-literate.
If it's a doctor who really is Lyme-literate, it needs to be an LLMD who is also an ILADS doctor.
posted
I don't understand his reasons, but I am not here to bash him.
Based on the number of papers he published and the talks he has given at lyme conferences, I would definately call him a LLMD.
I attribute it more to being set in his ways. The treatment he wanted us on my work for lots of people. Just not us
Posts: 65 | From Georgia | Registered: Oct 2007
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posted
B and M...If it's any consolation to you, I've seen quite a few people over the years dumped by their LLMD's.
But in my opinion, they weren't very good "LLMD's" if they're dumping people.
I'm glad you have leads on other drs. Be sure to talk to SEVERAL HAPPY SATISFIED CUSTOMERS before traveling another 8 hrs for a new dr!!
If you need help, please contact me!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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jamescase20
Unregistered
posted
Yes, thats insane, I took 1200!! rulide which is like zith, and 600 mg doxy or 500!! mg minocin, art, superart hhcaps, after switching to bart then babs tx now babs and all 3...lariam art, etc. u get the picture. I have all 3 and still sick in 4.5 months now, it takes time, but 300mg doxy according to the tick guide wont do it.
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bettyg
Unregistered
posted
b and m, so sorry to read this! but it sounds like you needed someone DIFFERENT anyway.
now you can some more research and find happy customers as tutu said!
b/m would you PM the name of the llmd you were seeing? want to verify they ARE on good llmd lists!!! thanks!
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Peacesoul
Unregistered
posted
Just a thought........ Some dr's drop patients because they are non compliant. Was your wife taking all his advice?! Is she a smoker? Did she get all the tests he suggested?
My friend is a doc and she will drop patients only if they cannot comply. If the patient does not comply, then they cannot be treated successfully.
posted
This only thing I can think of that we might have done was to push for a more aggressive treatment. We always wanted her to be on more than one ABX
Posts: 65 | From Georgia | Registered: Oct 2007
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posted
Aggressive treatment for lyme, etc gets docs in trouble with state medical boards. This may be the only reason for this action. And it happens fairly often that doctors who know patients need aggressive treatment are afraid to give it. Because if they do, the board may remove or restrict their license, hit them with big fines, and then they can't help anyone.
If anyone wants to be mad about this situation, aim it at the people who caused it, not at the docs and patients on the receiving end.
And some people do get well on low doses of monotherapy. But not everyone, and this doc may have assumed that people who didn't come back had gotten well, when in fact they went elsewhere because they felt they needed a different treatment.
Posts: 8430 | From Not available | Registered: Oct 2000
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Peacesoul
Unregistered
posted
quote:Originally posted by B and M: This only thing I can think of that we might have done was to push for a more aggressive treatment. We always wanted her to be on more than one ABX
Sounds like Lou hit the nail on the head. Dr's do fear they will be targeted.
But the fact that he dropped you because you pushed is pretty unprofesional. He should have at least be honest about why he dropped you.
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posted
Like I said earlier, I am not trying to bash the doctor. Or even disuade other people for going.
He was a member of my EPO insurance plan. That was great. He was the first voice my wife had that wasn't telling her that it was probably depression.
I think it was his trying to stay under the radar along with our pushing for a more aggressive treatment.
I had not seen any other posts about it happening to other people. Now I know otherwise.
I guess we cn attribute it to not being a good fit for us. At least we were able to start treatment with 6 months of some level of ABX in her system. That was better than we had during the past 6 years.
Posts: 65 | From Georgia | Registered: Oct 2007
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posted
Assuming he was afraid of the repercussions should he treat more aggressively, he should have explained this to you.
If that is not the reason why, I find it extremely ironic that he has restricted his treatment approach regardless of the situation.
This is similar to the philosophy of the IDSA; if you don't respond the way we think you should within the time frame we think you should, you must not have Lyme.
Posts: 129 | From Virginia | Registered: Feb 2008
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
You have not mentioned coinfections.
Were you tested for them? Do you suspect them? What's his position about them?
Sometimes that can be the problem.
Though frankly, I had not made very much progress at all by six months into treatment. However, that was not a sign at ALL that I wasn't going to. Patience, trust, switching meds and doing more than one med at a time (including Flagyl/cyst-busting meds), and treating babesia were key.
I wouldn't feel very much confidence in an LLMD who felt this way. Six months to a year or more to get better is not unusual. In fact, I'd say it's downright typical. Good luck with a new doctor!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
bill, i just looked; i had this llmd as being RETIRED!!! **********
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I know exactly what you're going through. I had something similar happen with my LLMD. It's hard saying something negative about LLMD's, even if it's the truth, and I understand that concern.
I also understand that other patients feel a strong bond for the compassion and help a lot of these doctors offer, and they know these doctors are in tough positions, but we can't stick our heads in the sand and make excuses for others constantly -- even LLMDs -- when our lives are on the line too.
Just because someone means well doesn't mean they aren't our enemy and or harming us. Think about all the doctors who you saw, those you fought with, who claimed it was in your head. Do you think they had hostile intent, that they all meant to be arrogant *******s? No, most of them meant well, but in the end, they were still the enemy.
Sometimes we have to go to war and struggle against -- and even abandon -- those who have good intentions.
So what am I saying? You have to find another LLMD and I really empathize with your concern for this current LLMD as well as your frustrations and disappointments with having him give up on you.
The dictonomy of being a Lyme patient. Both loving and being angry or even hating those who we depend on. Doctors.... in general.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I imagine that money was a primary concern for seeing that particular doc in the first place. That's par for us.
Do you qualify for state Medicaid, since your insurance company won't pay for a real LLMD, apparently. Tell Medicaid people that! Fight for it!
Each state operates Medicaid differently. But usually you can then CHOOSE your Medicaid insurance company. Choose wisely! Hurray!
The VA refused to help me (this was before I figured-out that I have Lyme)--they just babysat me at appointments. I was told by Medicaid people that since I am a veteran I must go to the VA.
I told state Medicaid people that the VA refused to help me. I fought and fought and fought that. Went over their heads to higher authorities in the State health department: veterans are not eligible for Medicaid? I won.
There are other strategies ... other ways ... a number of them.
Perhaps you could see an LLMD outside your insurance system (out of pocket,) and you could get meds paid for with Prescription Hope:
I contacted them and yes you can use their services ($7.00 per month, per med) if you have insurance, if your insurance has turned you down for Lyme meds.
posted
The only coinfection my wife was tested for is bart. The doctor said that only bart would change the way he treated us. All other coinfections would be handled by his treatment.
As for cost, we are not rich but according to the government we probably are. We would not qualify for aid. This doctor accepted our insurance. Others do to. I understand thatmany of the most recommendaed doctors on this board do not. Mainly because of the meddeling on treatment methods.
Cost of treatment is not the most important factor, but if we find a doctor who uses flexible aggressive treatments and is covered under our insurance.....why not
Posts: 65 | From Georgia | Registered: Oct 2007
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daise
Unregistered
posted
Hi B and M,
I urge you to get the best LLMD you can. This is too important.
Now is the pivotal time.
Please ... seek a real, live LLMD who actually is lyme-literate to help. They are worth it--and so are you!
There's nothing like a great LLMD who is helping you. Lyme is a sophisticated pathogen and coinfections compound it.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I agree with everyone here. Go the distance. Pick the best. Dr. F is a great pick, the guy is very good. If you wanted to fly, Dr. L in New York -- well you know all the great doctors. You should receive the list this morning sometime, and I'm certain you'll be very pleased and find exactly the care you need for your wife.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I am yet another person who was "fired" from their "LLMD". In fact, there have been, at a guess, 1/3 of patients fired from this LLMD.
I strongly suspect you are not an "original".
I was much worse off by the time I left this doctor. He insisted in Oral abx: I used to purchase the HUGE container of amox from the drugstore: the one that the pharmacy receives the drug in, and truly it split the difference from time to time; overall, I went downhill, and after being "cured" by him (I was very ill at the time), I went significantly downhill.
I was bedbound by the time I went to see Dr. S. in California.
I'm now considerably better: one year later. Don't dally: this doctor did you a favour. The sooner you find a real LLMD, and Real LLMD's have more than one arrow in their quiver, the better.
I'd say that I was fired because my illness was non-compliant to the doctor's protocol, and I'm betting for the vast majority, this kind of "non-compliance" is the case. We all know that bad science is when we throw away the results of the experiment that go against our hypothesis. This is so incredibly irresponsible, because they're dealing with peoples' lives, and that has such far reaching ramifications.
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Can I just ask in which State this "LLMD" works?
Posts: 209 | From Montreal, QC, CAN | Registered: Jan 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Ditto, I'd like a summary by PM if you can possibly help me. I need a patient report (anonymous of course) so that when other patients see this doctor they can read about others experiences.
Help me out if you can.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi,
I don't know anything about the doctor you are talking about, but sometimes making a change is the best thing you can do.
I had to leave my prior doctor who had treated me for two years and go to New York. It was the best decision I ever made, I needed a really knowledgeable doctor. I was way to ill.
I would be considered a non-compliant patient by most doctors and they probably would have dumped me, but my LLMD hung in there with me and now I am better.
I hope things get better for you and your wife.
Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
Well, I always thought things did happen for a reason.
We went to see out new doctor this week. His treatment ideas are much different than the previous doctor.
Our initial appointment lasted almost 8 hours over two days.
The doctor is an allergist as well and my wife got shots to supress her overreactive system, we actually left with her feeling physically better than when she walked in.
All of the is thanks to Geneal as she gave us the name of her doctor. Thanks! Posts: 65 | From Georgia | Registered: Oct 2007
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