posted
I'm curious how many out there have LLMDs who tend to change their opinion, seemingly on a whim?
For background, I was diagnosed with lyme, and basically every co-infection, with positive antibodies to everything. Although my babesia was wa-1 only, and somewhat a low titer: 1:256.
The best improvement I had was while on Levaquin, but I had to stop after 12 weeks due to tendon issues. I think it got most if not all of the bart though, as my feet pretty much has stopped hurting.
My main symptoms remaining are breathing problems and fatigue. I also have some joint pain, but I think that is sort of 'damage done'. So my thought was that perhaps we didn't treat babesia enough.
I do have other health issues that could be causing the breathing problems however. So I'd think the first way to go would be to rule those out 100%.
But what I find odd is how one month my doc sort of dismisses babesia, as I didn't have that much improvement when I tried babesia meds... to the next month thinking it is a major problem. Yet seemingly his decision isn't based on tests or anything. In fact, the doctor/patient role almost seems in reverse, where I constantly ask if it's worth retesting babesia, as I'd like to see if my antibodies increased... yet my doc says there is no point to it.
But what struck me strangest was today, where he recommended I see a rather famous Lyme doctor (not sure if we are allowed to give any details here... so I'll just say Dr. H). It felt almost as if he was just passing me along. Although I expect Dr. H to be insanely expensive and not financially feasible for me anyway.
Just curious what people think. To me, the logical way to go would be: test babesia again, and if it really looks like it could be the root cause, do a trial of mepron/zith again. Instead now my doc seems in reverse mode, where he wants to bombard me with babesia meds, yet doesn't really want to do it himself (due to insurance), so he wants a different doctor to do it.
I just find it strange, like they are all simply guessing what to do next.
Posts: 584 | From NY | Registered: Feb 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Just wondering if he is an ILADS doctor with experience? Perhaps he feels out of his depth or as you said maybe it is fear of being dropped by an insurance company?
A few years ago one lyme doctor was dropped by an insurance company and they wanted all the money that they had paid him in the past as well. You can imagine how financially ruinous that would be.
Lyme and co-infection treatment is complex and does require some level of guess work based on the experience of the patient and doctor.
I believe that most Lyme doctors treat clinically rather than on some arbitrary pre-determined treatment guideline. That really works best for most lyme patients because there is such a wide variety of what is effective from one patient to the next.
We are lab rats in a way. Try something. Share your experience with the doctor. They base the next step of treatment on your experience tempered with their own experience/knowledge.
Tests are not accurate for a lot of valid reasons and Lyme is an evolving field. LLMD's are learning new things all the time and their opinions may change based on new knowledge.
Anyway, that is my take on it.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
He'd an ILADS doc with years of experience. Perhaps not tons and tons of experience, but he's an LLMD.
I think insurance was one of the key reasons for the recommendation (he sort of hinted at it).
But again, the thing I don't get is his ever-changing opinion. Yes, tests aren't 100% accurate. And yes, it's a clinical diagnosis.
But my symptoms today were exactly the same as last month. Yet the previous month he dismissed babesia, yet today its: 'bombard with babesia meds'.
I guess I'd feel better if I had an idea what he was basing his decision upon. Especially since I'm not the sort of patient who does well with bombarding me with anything... I don't think I even tolerated mepron particularly well. Mepron + malarone + quinine + zith all at once would probably kill me...
Posts: 584 | From NY | Registered: Feb 2009
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
There's nothing that says you can't ask him why he decided what he did...
I always go into my Lyme doc with a page of questions printed out twice - and I give him one copy and keep the other to take notes on so I can remember what we talked about. Thankfully, he doesn't mind me asking all these questions (and even has a good sense of humor about it).
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
ILADS just had their annual conference. That always has an impact on LLMD's decision-making.
Skip the testing. Take the Babesia meds - the amount that you can handle! See if you herx.
If you do, continue with treatment.
Dr. H gave the Babesia talk at the conference. I suspect that is the reason for the referral.
posted
How long did you treat Babesia? They say 4 to 5 months minimum. Most folks that have commented on their Babesia treatment have done much longer.
posted
You think you might still have babesia, you question his approach, and then say you are doubtful about babesia meds. I think the doctor is not the only one blowing hot and cold on this. Maybe he has picked up on your doubts and doesn't really know how to treat a patient who questions the meds. So maybe we have a wishy washy patient too. This is a team effort. So you need to come to a conclusion that suits you both.
And it also sounds like insurance is an issue and the other doc may have more experience in this pathogen.
Have you checked to see what the cost would be for the doctor he recommended?
Posts: 8430 | From Not available | Registered: Oct 2000
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For the past 6 months I've thought babesia may be causing my symptoms, and asked to retry babesia meds again. Each time my doc says if I didn't respond previously, he doubts it's babesia.
I don't doubt the meds. I'm very willing to do a mepron/zith trial again. However, I doubt my body can handle a full onslaught of babesia meds all at once.
But that's moot. My doc didn't suggest offer an onslaught of meds. He suggested a different doctor for the onslaught. One which I probably can't afford anyway.
I should also mention he never said came out and said: "I think you definitely have babesia.". He said he is confidant I was exposed to it.
The recommendation to see another doc for the babesia treatment was just as a 'trial' (he recommended 3 months), to see if it is babesia.
So basically I had about a year of 'not babesia', to this summer of (let's try mepron)... to several months of 'not babesia', to this month 'probably babesia'... which led to 'bombard babesia meds as a trial' (yet, again, my doc didn't actually offer me any babesia meds at all. And I specifically asked him for mepron.)
@gmb
Last year I did 4 months of malarone/zith. This summer I did 1 month of mepron/zith. He told me to stop it when I had mixed results and got somewhat itchy. At the time he said if I had babesia, I would have noticed a major improvement in that one month.
----
Last month when I questioned if one month was long enough to see any improvement, he said a 10 day trial is usually enough. Then said those who take mepron longterm probably aren't really treating babesia.
So see what I mean by wishy-washy? Last month 10-30 days was plenty of mepron for a babesia trial. This month, it's see another doctor and blast it with several drugs at once, for at least three months. I'd prefer a little consistency with what he says.
Posts: 584 | From NY | Registered: Feb 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
In my personal experience one month is not long enough to see improvement. It took 6 months before I saw positive changes. Given what your doctor believes about babesia I think you would be better off going to someone with a better understanding.
Your doctor may be right about those who need mepron long term. That said, who cares what is being treated as long as one has improvement?
Hang in there and keep working at it.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I was on four months or so of low dose malarone for definite babesia (two different positive tests) but still had symptoms. So, I went to a different doctor who treated me for lyme and babs at the same time, this time with IV. It took several months to finally knock it out, with artemisinin thrown in at the end. I had one episode of itchy skin, suspected liver issues, stopped mepron for a while, then restarted it.
So basically I had 7 or 8 months of babs treatment. Don't know what would have happened if he had started me out on a higher dose of malarone. And don't know if the lower dose knocked it down and mepron finished it off. Just a guessing game.
[ 11-03-2011, 09:41 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Boxer-mom hit the nail on the head.
As new info appears, the docs try to incorporate it into their practice.
Since your doc feels another doc has more advanced knowledge, they are doing the right thing by referring you there.
No test is 100% accurate. There is no hard and fast "cure manual" to follow, so it is a trial and error situation.
kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Unfortunately, because this doctor takes insurance, at the end of the day the insurance company rules.
We have started going to a new doctor for that very reason. The doctor that took insurance started backing off of treatment and not wanting to treat like he did in the beginning.
I truly believe that it's because the insurance companies are harrassing him. Very sad! So now we are in a situation where we have to pay out of pocket but we are receiving the right kind of treatment now.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
I think insurance may have played a bigger role in his decisions that I originally thought.
When I first saw him, he stated Babesia took 4+ months to treat.
Later on, he said it was 10-30 days to see improvement. And his babesia treatments were on the conservative dosing side too.
So perhaps he believes it does in fact take 4-6 months + to treat, but is afraid to say so, as if he did, he'd know I'd ask for babesia meds for that long.
Question for those who see docs who don't take insurance. Can you still use your insurance to pay for medications the doctors write?
If so, are there any problems getting scripts filled using insurance?
Posts: 584 | From NY | Registered: Feb 2009
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posted
Just a quick answer on insurance. If you have a PPO with out-of-network coverage, you should be able to submit your receipts from the doctor's visits-- and get some of that money back.
As for the meds-- we never had any problem. The pharmacy billed the insurance company as usual...no different than going to any other doctor.
Also, our LLMDs (we have two--one in VA for myself and my son, and one in Boston for my daughter) use Quest Labs and that gets billed to the insurance company.
So for us the biggest cost is the out-of-pocket portion of the doctor's bills, because we end up getting reimbursed less than half. The other huge cost are the supplements, because they are not covered by insurance.
Good luck. I'd go see Dr. H. Mary
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
Afraid I have an HMO, so no out of network benefits.
If I could afford Dr. H, I'd definitely consider seeing him. But financially it doesn't seem so feasible for me.
The price I got for the initial appt. only is around $1000. I expect I'd only see a PA too, not the doctor.
And cost of extra tests + supplements + possibly any meds my insurance doesn't cover, probably would boost that up quite a bit more. A three month trial, like my doc suggested, may end up costing several thousand.
If anyone here has seen Dr. H and have rough estimates of cost, I'd be grateful for a PM. But based on the initial cost alone, I think he's way out of my price range.
Posts: 584 | From NY | Registered: Feb 2009
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quote:This summer I did 1 month of mepron/zith. He told me to stop it when I had mixed results and got somewhat itchy. At the time he said if I had babesia, I would have noticed a major improvement in that one month.
I didn't notice anything in the first month. As Terry said, it took at least six months to see any results. I've been on Mepron now almost two years.
If you can't afford Dr. H., then try and get your LLMD to prescribe Mepron/Zith. The problem is, you need to be on it a long time, and to work up to high enough doses(2 tsp. bid) for it to be effective.
Posts: 964 | From san diego | Registered: Oct 2009
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posted
I think the length of time anyone needs babesia treatment is an individual thing, and you only find out by treating. And there are other drugs that can be used instead of mepron. If you watched the ILADS streaming presentation about babesia, coartem might be a possibility for you. You just take it a couple of days. Might have to repeat this, but it isn't an everyday med.
[ 11-04-2011, 12:04 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I'm hoping if I tell him Dr. H is too expensive for me, my doc will treat.
But again, not sure if insurance issues are a problem for him. or not. At the very least, it'd seem a zith-mepron trial would be worth doing.
I'll look into coartem too. The feeling I got from my doc was he was pushing the 'all or nothing' sort of treatment, and since he can't prescribe 'all', I'm not sure he'll do anything.
But I'll see. Again, he seems to change his opinion quite often, so maybe next month he'll decide to treat.
Posts: 584 | From NY | Registered: Feb 2009
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