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» LymeNet Flash » Questions and Discussion » General Support » LLMD not returning calls

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Author Topic: LLMD not returning calls
katrinab
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Hi there, does anyone here have problems with their LLMD responding to their questions in a timely manner or at all? I am having problems with my LLMD refilling my meds on time (sometimes she doesnt do it for a week), answering questions via email, or she will tell me that she can answer a question if i call her at a certain time only to be told i have to come in for an appointment if i want her to answer my questions. people i know that see her say that she is just overwhelmed with patients and that alot of LLMDS are like this. I just dont like to be treated this way by someone im paying good money to. So id like to know if this is a common problem or if I should move on. She seems to be quite knowledgeable.
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poppy
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They are overwhelmed and some patients overdo contacts between appointments. Not saying you do, but there aren't many doctors of any kind who want patients to keep asking for things.
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aperture
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Maybe she could give you enough refills to last until your next appt.

That's what my LLMD does. Then, I don't need to contact him/her unless it's for some severe reaction/herx.

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aperture

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Dogsandcats
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Maybe you could call and ask the front or back desk people what their procedure is for questions, refills, etc.

It does seem like you have tried everything...confusing.

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God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

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Catgirl
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I've experienced the same type of treatment from 3 lyme docs. They are so overwhelmed. They just want us to stay on the meds they prescribed until we see them again (even if you have to drop one of the drugs).

It's sort of an unspoken thing in lyme land. I've heard that top docs will drop a patient for calling too much. Unless you're in the emergency room, don't take it personally (they're swamped). It is what it is.

There are too few of them to go around, and unfortunately, way too many of us. At least we are getting treated. Imagine if more people actually BELIEVED in lyme and sought out treatment (could be worse)!

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--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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katrinab
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idk i just wonder if she is in it for the money too sometimes. one of my friend who has lyme says that she is in business like everyone else to make money. when he went to see her last she said "stop buying supplements from the internet. you and others are making me lose money you have to start buying them here". we all pay her $125 a visit. a lot less than other LLMDs so maybe thats saying something. we all only have 30 min appts with her though, they arent like 1hr+ aptts like other LLMDS though. She also says she wont give refills because some of her old patients would get a prescription and never make a new appointment. alot of people do that, that doesnt mean you cant give refills! she just seems very money hungry. any thoughts on this?
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katrinab
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with the refill thing, i meant alot of regular patients do that, not just lyme patients. they go to a doctor, decide they dont like him/her and never book a second appt. for someone with chronic lyme 2 or 3 refills isnt usually enough anyways, so they will eventually have to return if they want to get better. my llmd's explanation on the no refill thing seems to make little sense to me.
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chastain
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im sorry, my llmd is really busy and always finds time to get back to me. i understand if a dr is swamped a call may be delayed, but its just not good medical care in my opinion if your dr basically ignores you.

and a doctor dropping a sick patient for calling a lot/being persistent is borderline unethical, in my opinion. dont be so grateful to have a dr recognize lyme that they treat you in a subpar manner.

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aperture
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If she was only in it for the $, she wouldn't be an LLMD risking her license and livelihood in the process.

I am so grateful for the sacrifice my LLMD is making. I could care less if he/she gets a tiny commission off of my supplements, as long as he/she tries their hardest to try to get me well in the process.

Let's say, your LLMD hypothetically charged $100/hr. In a regular Dr's office, she could see at least 6-10 patients in that hour, and most Dr's doublebook.

So, she could make well over $600-1000+++ in that same hour, in a regular clinic, without putting her neck on the line.

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aperture

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poppy
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I recently went to my PCP, who does not treat me for lyme. He charged $100, for about 5 minutes of his time.

Patients who do not have much medical experience can misunderstand how the world works these days.

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katrinab
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yes, i do not have much experience with LLMDS but all of what you are saying seems to make sense. I was coming at this from chastains point of view as being ethical, but if she is charging me alot less than most doctors and putting her license on the line then maybe she is doing her best. I know i dont like to be ignored, but maybe I should understand that there are alot of patients out there who are worse off than me and she must try to help them first. I live in MASS, and understand a new law was passed to protect LLMDs. why are doctors still afraid of treating lyme? any thoughts on this?
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aperture
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That law is not in the rest of the country.

Have you watched "Under Our Skin"?

I hope Keebler will chime in with some excellent links that explain all of the politics surrounding Lyme.

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aperture

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trubeee
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I hate to ask katrinab (only because I am not sure if you're allowed to ask), is this Dr. H? in MA? She's had great feedback from pts on ratemds.com! It might be helpful to read them. PM me if you'd like.
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chastain
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just want to add something-dr p in ct who is no longer practicing due to illness was one of the biggest lyme drs in the world. and guess what? he returned every phone call and spent as much time as needed with me.

im telling you, drs work with and for you. they absolutely deserve a break if overwhelmed, but a dr who for all intents and purposes ignores a patient is not a good doctor-period.

just because someone is a llmd, doesnt mean they are a saint, or even a great dr. all llmds are not created equal. hope everything works out well for you katrinab.

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aperture
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I wish we could stop dropping the "unethical" word so much on this board.

Drs can drop patients for any reason they like.

Regular Drs can pick and choose who they want as patients. There was one who refused to treat patients who were on disability, because of the extra paperwork involved. This is not unethical.

My former PCP misdiagnosed my husband when his kidney was completely blocked, due to retroperitoneal fibrosis growing in his belly.

She was calling in pain killers and phenergan without seeing him. That is unethical. When I complained in front of other patients during an office visit, she sent me a letter and fired me as a patient. She also had me banned from that entire health system.

katrinab: is she leaving you completely without meds during the time you are waiting on a refill?

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aperture

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chastain
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hi aperture, if you want to change words, how about immoral? surely it is immoral for a dr to not respond properly to a patient paying for care. sorry about your former pcp, thats awful.

but just because a dr can drop a patient, doesnt mean its RIGHT for them to. we should hold our llmds to the same standards as mainstream drs. period.

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aperture
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I agree chastain. Immoral fits. Sorry about the semantics. I don't hold LLMD's to a higher standard. Like you said, there are good ones and bad ones.

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aperture

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chastain
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glad we agree, aperture. wish you all the health in the world.
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aperture
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ditto chastain [Smile]

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aperture

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katrinab
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i know about the rest of the country but i hear doctors still are afraid to treat lyme patients here in MA even with the new law that was passed. i dont get it. no my doctor is not dr.H. I am left without any meds during the time it takes my doctor to call in a refill. it is awful sometimes because after being off antibiotic for only a few days the pain feels unbearable like i was before i got on abx. i just hear she is overwhelmed, and i dont know if i should switch to a new LLMD or if i will have the same experience. I know that $125 isnt alot to charge a patient with lyme compared to other LLMDS. but even the well known Dr. D in MA doesnt charge, takes state health insurance and has helped many. there is another LLMD in mass who also takes state health insurance. so i really dont know what to believe.
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katrinab
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i know about the rest of the country but i hear doctors still are afraid to treat lyme patients here in MA even with the new law that was passed. i dont get it. no my doctor is not dr.H. I am left without any meds during the time it takes my doctor to call in a refill. it is awful sometimes because after being off antibiotic for only a few days the pain feels unbearable like i was before i got on abx. i just hear she is overwhelmed, and i dont know if i should switch to a new LLMD or if i will have the same experience. I know that $125 isnt alot to charge a patient with lyme compared to other LLMDS. but even the well known Dr. D in MA doesnt charge, takes state health insurance and has helped many. there is another LLMD in mass who also takes state health insurance. so i really dont know what to believe.
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aperture
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Wow, that's horrible to be left for days with no antibiotics, in the middle of active treatment. I don't think that is about the politics of treating Lyme. I think that is poor patient care. In that case, I would look elsewhere.

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aperture

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chastain
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i concur a thousand percent with aperture. you should most definitely move on, in my opinion.
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katrinab
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I am looking for others opinions who have LLMDS. Should i move on to new doctor? thanks
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momindeep
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You have to weigh the pros and cons of staying with your LLMD...if the cons outweigh the pros then it is time to move on.

There is no gaurantee that a new LLMD would be any better either...

I do have to agree that not having access to continuing medications is extremely troublesome.

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sammy
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My doctor NEVER gives refills on meds. You have to schedule a follow up every month. Then they will decide to keep or change your antibiotic protocol.

They also charge closer to $300 for about 20min. It costs much more when your appt goes longer. Obviously when you have more problems to address, your appt will be longer than 20min, it is going to be much more expensive. They will charge more. I accept this because I appreciate their wisdom and guidance. Their time is valuable to me.

My LLMD's office also charges for phone calls (cost varies based on time needed to respond to the call). I understand this, they are so busy taking care of patients. They need you to only call if absolutely necessary. Like if you are terribly sick, having some sort of med/allergic reaction, need real medical guidance. Something that absolutely cannot wait until your next appt.

Otherwise, if it is not an urgent problem or question, try to make a list for you next appt. That way you don't forget to address anything.

Talk with your doctor next month about the refill situation. Ask her directly how she wants you to deal with this next time. Does she want you to fax, email or call? 2 wks or 1wk ahead of time? Or maybe she will give you an RX to have on hand?

I know my doc doesn't like me to run out of antibiotics but they also don't like refills. They prefer that I make a follow-up appt before I run out of meds. Maybe your doc is the same.

Sounds like you have a good doc katrinab, you need to try to talk with her. Don't give up on her yet.

Remember, doctor's are people too. None of us are perfect. We all have our flaws. We all get stressed and have bad days. We all get bogged down by work. Maybe things are not going so well with her staffing right now... You don't know until you ask.

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bcb1200
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I assume you are talking about the MA LLMD, Dr H?

She is not in it for the money. She is a very good doctor. In my experience, the reason why she doesn't call / reply to emails is due to:

a) Her office is overwhelmed
b) Her office lacks technology (everything is paper based, no computers..very "old school"....this contributing to her being overwhelmed.
c) Her receptionist is a bit incompetent.

Keep trying. Dr. H is very kind and very good.

If her office inefficiencies get to be too much, you may have to switch. (I did)

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

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katrinab
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No again, I am not seeing Dr. H. I guess the cons outweigh the pros. I dont know of any doctors in mass that is as good a doctor as she is and charges the same price. I have talked to her about the refill problem and she said she would tell her assistant to mark on the calendar at the first of the month that i need a refill. Well this last time, i still did not get a refill and the assistant apologized for not doing it on time as promised. I said it was ok, but make sure it doesnt happen again cause this is like the 5th time!

Until I find a better doctor, I guess it is right to stay with mine. She also doesnt give refills until you call to ask for one and you have an appointment scheduled. she says this is because some people get a med then never come back. as i was saying, alot of people do that, not just lyme patients and those other doctors dont have this same policy. i think it is a way to ensure that she gets her money. perhaps i cant blame her, i dont know how much she has to pay her assistants and what not and according to everyone else here $125 isnt alot to charge a patient which is what i pay.

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JeniferM
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Er... I'm confused about the refills and people not coming back after they get the med. Is the doctor out something if they tack on a refill or two to an antibiotic? I've still paid for their initial time, diagnosis, and their prescription. I then pay the pharmacy for the meds.

My LLND expects me to visit her every 8 weeks or so. The three meds I'm on now don't come up for refill at the same time, so there's always one or another that I have to call the office to get them to send in a refill to my pharmacy. There was once over the Holidays where I pushed it too far past the 8 weeks and they said they would call in a 2 week refill, but I had to come and see the doctor before it ran out to get a refill.

Or are you saying that, if you call them between visits for a refill, they won't do it? And you're only getting one month's worth at a time? That's insane unless it's a medication that really should not be taken more than a month at a time in which case you wouldn't really be refilling it anyways.

I can understand not allowing too many refills in between visits since they don't want your liver or kidneys to fail or something. But 2 months at a time would seem relatively reasonable. My experience so far is relatively short, so I might be completely off-base.

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IgM: [18++,31+++,34++,41++,83-93+] [39 IND]
IgG: [41 IND]
Positive according to IGeneX. Negative according to CDC. Negative for co-infections.
Currently treating for Lyme, Bartonella, Babesia

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Catgirl
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Wait, Sammy, your doc doesn't give you refills? What happens if you are too sick to make your apt in person and you didn't schedule a phone apt? Do you just run out of meds? I guess I don't understand why they don't give refills.

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--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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