am so confused. I want to see this LLMD badly. I keep hearing from patients that he will see you once every two months. I call the office and his staff isn't that friendly and says once per month period.
I would be driving 8+ hours to see this doc. I CANNOT MAKE A MISTAKE. What's the real truth? Is the staff uneducated on this piece? Correct? Doc picks who and when he wants to see? I understand if you're on IV Abx that it would be frequent.
I was seeing a LLMD who saw you once every six months. THat was just not for me. Half a year goes by before you talk to you doc. Before you know it, your life is done and you're sick.
I do not need feedback on his treatment protocols/approach. I have acquired this. I am only interested in his true flexibility with out-of-state patients.
Posted by Karen Mc (Member # 23354) on :
Hi seekhelp,
Im not sure who you are wanting to go see and in what area you are talking about.
I know that when I first started seeing my LLMD I was going every couple of months with perhaps a phone consult in between. I cant imagine going 6 months between visits unless you're stable.
Since Im still having MANY problems and he is having to keep changing my meds I am now seeing him evey 4 to 6 weeks. I am sure if I told him I needed to come every 2 months he would allow--which may end up happening as my funds are getting to be about nil-lol
I would suggest going to visit...let him get to know you and then he probably would allow every 2 months once he learns your situation.
Often the office staff is very hard to get though but once you meet and are a actual patient things may be more subject to change.
After all the DOCTOR is the one with the final say..not the office staff as to the frequency of visits.
I personally do not feel like my LLMD is just having me come more to get more money--he is actually trying to get me stable...besides its not like they have a shortage of patients...there is always someone else willing to take my appointment.
I feel blessed that he is willing to continue practicing and attempting to give me my life back
Good luck and I hope things work out for you.
Karen (:
I understand that your point is having to drive 8 hrs but wanting to get good treatment..perhaps he does phone consults as well that might fill in the 2 month gap??
If you are talking to patients of this Dr and they say they are going every 2 months then I can pretty much bet once you get in as a patient he'll do the same for you (:
Posted by unsure445 (Member # 15962) on :
It really depends on what you are taking. If I am on a combination of antibiotics I have to have any appt. monthly along with monthly bloodwork to make sure liver function is normal.
If I am on herbs with just one antibiotic it might be every 6 weeks. just herbs, every other month or every three months.
The office staff is probably giving you the likely scenario so you are prepared.
To be honest if you are on a combination of medications and having symptoms you will want the monthly appointment to check in and stay on track. Sometimes I push it out a week or so and I usually wish I hadn't.
There is a lot to keep track of and monthly increments seem to work the best.
Good luck!
Posted by Karen Mc (Member # 23354) on :
Thats a great point unsure....but just to throw it out there I am hours from my LLMD and because I am on a ton of meds...
abx combinations and supplements he keeps on top of my lab work as well
but he fills out a lab corp sheet and I am able to take it to my local lab corp collection area---
they have them through out the nation, so I dont even have to go to my local MD to have my blood drawn I just have to go (luckly) about a mile up the road from where I live (:
Posted by lymebytes (Member # 11830) on :
Depends on if you are on oral or IV abx.
The 3 LLMd's I have seen (for oral abx) - none have a "set" time to come back. One recommended at least once every 3 months w/a phone consult if necessary.
Most LLMd's want you there monthly especially if you are on IV.
I'd ask if they do phone consults if you are going to be on oral abx.
Posted by jennie46 (Member # 20953) on :
seekhelp,
I sent you a PM
Posted by Lymetoo (Member # 743) on :
Don't forget that you can see any dr you want to as often as you want to or can afford. (within reason, of course!)
Posted by seekhelp (Member # 15067) on :
Good point Lymetoo. Distance was prohibitive for me unfortunately. I guess I'm at the point of desperation and want to try Dr. B-type treatment. I know there are no guarantees, but that's how most here got well eventually.
Financially and logistically, once every 5-6 months sounds so nice. From a treatment perspective though, it gets muddy. Of course, others may have better luck.
I'd like to see a doctor....NEVER because I'm cured. lol. Wouldn't we all?
Oh this LLMD is CLEAR, CLEAR, CLEAR about NO PHONE CONSULTS ever.
Posted by cantgiveupyet (Member # 8165) on :
have you tried the blog.. not sure if you can contact thru there... or maybe asking if you can talk to the Dr when you call the office..so you can get the clarification that you need.
Have you tried contacting the local support group- I think there is one in that area.. they may know...or might even be able to put you in contact with the dr?
Posted by joysie (Member # 11063) on :
Check pms
Posted by sammy (Member # 13952) on :
If the doctor requires follow-ups every month he will probably only prescribe one month's worth of medication and deny requests for refills. That way you are forced to f/u on time each month. At least that's what my doc seems to do.
Seek, maybe you should try to call the office again and see if you get someone nicer...try midweek after the staff's lunch break, people tend to be happier after they eat.
Hopefully the doctor will be willing to work something out with you.
Posted by djf2005 (Member # 11449) on :
Seek-
Dr H (east coast) is very similar to Dr B treatment as he was trained by him and after you are set initially you can go to 2x a year or so if you like. More if you want as well, really no pressure.
They require LFTs and CBCs every month or so but beyond that you can go pretty much at your leisure.
I don't know about web MD so I cannot comment, only that it seems like there is an influx of people going there based upon what he posts and I am not sure how accurate that is.
Best
Derek
Posted by seekhelp (Member # 15067) on :
Thanks everyone. I appreciate your feedback. I'm trying to make a gut wrenching decision of Dr. H in NY vs. Dr. J in MD. Financially, Dr. H @ almost a grand for an initial visit is tough. I'm at the point where I've wasted almost three years of my life and this is my final decision. Anything but the very best is not acceptable.
The issue is managing expense, time, travel, etc. I want a LLMD who is agressive, accessible, thinks outside the box and will truly try to help. No boilerplate treatments. I want specific to me based on my test results and clinical issues.
I've gotten a lot of positive feedback about LymeMD. What is hard to know is if the online persona of LymeMD is the real thing when you come in person.
From a sure thing perspective, Dr. H seems like the winner. Dr. J is in my insurance network.....ughhhhh.. lol.
Sammy, none of the staff I've spoken to at Dr. J's office is that nice yet. I feel like they're reading off a script at times. BUT all I care about is if the doctor is great and helpful. Simple as that.
Posted by laurisabelle222 (Member # 16591) on :
He is kind, compassionate, and his blog is descriptive of how he thinks. So, if you like how he thinks through his blog, then you should like him in person.
He takes care of labwk, meds and tells me at the visit when he wants to see me again, keeping in mind how far away I am and what the current situation is, so I dont think there is a general rule of how often he wants to see you. he bases it on the situation.
So, Im sure you can speak to him about your concerns and u can work it out.
I wouldn't recommend going through the staff though. They are really detached and its my one main obstacles. When I speak to him, I always walk away feeling confident in my treatment.
Just make sure you address everything with him at the visit and not rely on the secretary.
Posted by purplemom (Member # 21064) on :
I think it could vary depending on how you are doing and what needs to be monitored.
I initially saw my LLMD once per month with several phone calls in between when I started because I was very sick and he is slowly increasing the meds as I could tolerate.
At this point I have moved up to every 2 months.
Posted by sometimesdilly (Member # 9982) on :
hands down, not a close one, go with Dr. H. Posted by seekhelp (Member # 15067) on :
Sometimesdilly, can you PM me with why you think so? Posted by seibertneurolyme (Member # 6416) on :
Seek,
Hubby has not been to either doc, but in my opinion Dr H would be the better choice. Several reasons for this -- number one would be experience. Dr H has been treating for 10 or 15 years compared to 2 or 3 years for Lyme MD. Also since Dr H treats tickborne illnesses exclusively I am sure he has seen many many more patients than the other doc who is also in general practice.
Some other reasons I would pick Dr H -- think he will test you for more secondary issues such as methylation defects or mercury toxicity for example. Also of course as you know I feel strongly that nutrition and herbs can be beneficial -- and the addition of herbs to a treatment protocol adds many more treatment options.
Let us know what you decide. I know you have had a tough time and are getting very frustrated with the lack of progress. I do agree that some new eyes are probably needed at this point.
Best wishes.
Bea Seibert
Posted by randibear (Member # 11290) on :
i saw my doc every 30 days because he wnated to do bloodwork because of the meds.
i live about 2 hours away.
Posted by seekhelp (Member # 15067) on :
Bea, I think you're dead on. While LymeMD sounds great and financially is so much better, I'm at a juncture where I want the very best and a long-time commitment.
I tried to contact Dr. S in MD (now famous LLMD), but he really, really does not like out-of-state patients. It was a lot of time spent for nothing, but hey I gave it a shot.
Dr. H's office sounds extremely competent, willing to work with out-of-state patients and able to explore issues other doc's can't fathom IMO. I KNOW there is something big the other LLMDs missed with me. I can't go on living like this forever. I essentially have had no normal life for almost three years and been given baby treatment most of it. It's time to go down fighting with all guns blazing.
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