Since people have been posting a lot of philosophical questions in the last few weeks (must be the holidays), I have one to add.

I've been seeing one of the most hotshot LLMDs in the country for the last two years. For those whole two years, he kept telling me there was no way I had a co-infection, and intimated that if I didn't stop asking about it, he'd boot me out.

Now I've found out that I have babs and bart, and am in the middle of a huge herx. From other Lymenet posts, it's also become clear he's been treating other patients with advanced abx the whole time. He even published a paper on the use of artemisinin, which he never mentioned.

I have been trying the "I'm so grateful" speech to myself, but it doesn't ring true. What is true is that he's the only LLMD who takes my insurance, he knows everyone else in the business, and there aren't many other LLMDs around anyway. But I don't trust him at all, and hate having to go to his office and pretend this didn't happen.

Does anyone have suggestions for how to either 1) keep my mouth shut, take the abx and get out, or 2) find a replacement LLMD?
 

Not sure where you live but I'd probable ask for copies of all records (you may have to pay) then move on. It's pretty draining to have a conflict with the doc and quite honestly who needs the stress.

I've had to change docs (not LLMD) and it was easy because I knew I could go elsewhere but if your not happy then it's not worth it.

I unfortunately have to pay upfront and get reimbursed by insurance but I'm glad I get to see who I want.

Best of luck!

 

That said, I'm in the boat you are in. But, my LLMD DOES NOT take my insurance. In fact, I believe he's in the situation that most other LLMD's are in-taking NO insurance at all.

If you can just boil it down to money, you would have your answer. Stiff it out, do what you can on the side, and use this LLMD until he won't honestly treat what you believe you have. Because he does take your insurance.

Or, if you are willing to travel, pay out of pocket for LLMD visits, with possible reimbursement from your insurance company after your visit, then find another LLMD.

Hot shot LLMD's are not worth the angst, if you have a choice, either money-wise, or travel wise. In my opinion.

Thought what snowboarder had to say about getting your medical records BEFORE YOU LEAVE was a great suggestion. I would definitely do that anyway. Whether you plan on leaving or not. Because you never know when you may leave, or if this LLMD decides he's had enough of YOU. Then, if you have a parting of the ways, you've got your ticket right into another LLMD's office, without having to deal with this LLMD's ego. You said he knows all the other LLMD's anyway, so this would only be protecting your future.

I honestly doubt you'll find much support on this board when it comes to situations like this. Perhaps you're just casting a wide net, and hope to get lots of feedback via email? I did not check your status on your profile, but if you have not listed your email, I'd suggest you do that pronto, so you may in fact get responses that way, but don't look for much help in this public forum.

You may get bashed, depending on how you word your questions/queries. I note that you did not list your area of the country near your name,that is a smart move.

Censorship is alive and well here on Lymenet. Be very wary.

[This message has been edited by Just Julie (edited 09 January 2005).]
 

daniella
 

that bart and babs is serious stuff. is there some way you could word it to him like...oh..."Well I just felt I would get a second test done and guess what it came back positive. ..maybe the lyme sy hid the other symptoms. Can you help me?" cry a bit? I have grovelled plenty in these offices...
But perhaps first get on someone else's waiting list? In case he says no? as a plan B.
I know these guys and gals get really stressed out and also many have LD themselves.

I went to the best of the best and sometimes had to tread lightly, but his staff said he gets like that.

It hard to tell what is going on with some of these guys, and if you trust him more than 50% I would try, if it were me, to put things to him so he can save face...
you know?

btw thanks for the validation. I needed that.

 

It's a surprise to hear that many LLMDs also have LD, and also that other patients have used significant strategy to get through the LLMD experience.

I'll do my best to take your advice, and be cautious. When you're sick, it's so easy to go to the extremes of taking things too personally, or not personally enough. Just have to keep your eyes on the prize, I guess.
 

Probably the thought that came forward for me, loudest, is that i am more tired of being at drs' mercy than i am of the disease itself. I don't want to be at anyone's mercy.

Your intuition - it's powerful. Don't discount it. You were right about the Babs. Your intuition is probably itching at you about this as well.

Awesome suggestion about getting medical records.

I don't know where you are located, but I have just met two of the nicest llmds. They are just practicing medicine and treating lyme patients in a compassionate and empowering way.

Sounds easy enough for me to suggest, but just a thought for the future. If you stay with him for now - just to get by - perhaps you can get insurance through a different company. I don't want to make it sound simple. I just have to remain open to the idea that we all have options. We just have to figure out what they are.

Best of luck and health
Regards
Paisley
 

That said, it sounds like its time to get your records and move on if at all possible.

My first llmd would not look into other coinfections w/me and it turned out i had babs, bart and erlichia! Anyway, I have heard of some that don't like treating them.

I wish you luck, this must be an awful situation for you to be in.

lymesux
 

Perhaps it's best to not say anything, but just to go, so as not to burn any bridges if you need to go back to him for any reason in the future.

DLL
 

It means to get all you can from the source. Take what you need, being prudent and unemotional. This is about survival, not hurt feelings.

Meaning that doctors use you for their business. We need to use them for the information they can provide. Not every doctor is equally as smart so you have to learn to pick and choose.

quite frankly I feel that Lyme disease is one area of medicine where the intellect playing field is pretty close to even between patient and doctor and doctor to doctor unless you are really, really into it specialized. Most patients here know more than most doctors.

The time when doctors mumble about dropping as a patient is when they feel threatened. So many ways it is a game and the patients that get well seem to be the ones that learn to play the game and get the most information and knowledge from doctors.
 

Lymielu is has also hit the nail on the head when she says that we are pretty much on an equal playing field with the MDs re this disease.

The bottom line is that you have "hired" this professional and he needs to work with you on your terms. Much like when you have a bathroom remodeled - do you let your builder pick out the tile color? Nope, you have lots to say about the final outcome.

My opinion is that you should go back to this LLMD and tell him that you would like to be treated for co-infections. What has he got to lose - he still gets paid by the insurance co.

I was not getting better during my first 8 months of treatment. My MD and I decided to take a break from abx. I just got sicker and sicker. I researched the heck out of this disease. I went to my PCP and told her to test me for co-infections. She did, the tests came back negative. But, she had suspicions that I had Babesiosis. She sent me right back to my Lyme MD and said "Tell him to treat you for Babs".

I walked into his office with a stack of literature on co-infections and information on how inaccurate the tests are. I said "humor me & treat me for Babesiosis. You have nothing to lose and maybe something to gain". He saw how thin I was and without question started me on a Babs protocol.

I started to improve and since then he has become very open minded about this disease and has admitted openly that Lyme and its co-infections are a mystery to the medical community. He was actually grateful that I had done so much research. His ego was not bruised and I was extremely polite. I think he knew I would go elsewhere if he didn't help me. (I did go for 2 other opinions from Supposedly Lyme Literate MDs - thay both said I did not have Babs because I did not test positive).

Try to talk politely and openly to your LLMD. Discuss his viewpoint and yours, as equals. You are very fortunate that he takes unsurance. Mine does too and that is part of the reason I pushed for the treatment.

Hope this helps. Maybe we have the same MD?

Bc

 

Here's my opinion for what it is worth...
If you want to continue seeing this LLMD ask him how you could communicate your concerns about your health to him so that he was able to hear you. Ask him to explain his theory on why it was not necessary to explore the co-infections because you want to understand how to get better. Let him know you are disapponted and willing to learn how better to communicate with him.
I have found that when I ask questions and empower the dr. I am empowered by the reaction because it is a joining of forces as opposed to a splitting. I am not a victim of the medical field. I am a participant and in charge of my health ( my mantra when walking into the office).
I have been dealing with this for 10 years to the point where they wanted to do brain surgery because I kept testing negative. I trusted my intuition and asked lots and lots of questions.
We are humans and deserve to be treated with dignity and respect. I must go into the office with that intention. If the dr. cannot treat me respectfully I have to leave so I can get better.
Thus endith the sermon.
I hope this helps.
Blessings,
Marblenose
 

was also told the Lyme was gone.

After switching to another very well known LLMD, and having lots of tests. I found Lyme active as well as babs bartonella, HHV6 virus, and chlamydia pneumonia...as well as possible mycroplasma!!

I know your frustration! I have had so much trouble letting go of what my old LLMD had said to me. I trusted this person and feel betrayed.

My advise is to get out. You might have to pay out of pocket up front, but in the long run if you are not getting the correct care then how worht it is it to go to this person?

Best Wishes
 

It would be heartening if some of us had the same LLMD, and he was the one who had apologized and become more open-minded about co-infections. It won't help me, but others would benefit and save time and money.

Am open to your suggestions. Thank you again.
 

I left a former LLMD of mine for telling me I no longer had lyme, just food allergies.

Uh,, I still have lyme, and bartonella, AND mycoplasma and orthostatic intolerance- must of missed those.

It doestn pay to stay where you arent happy.

Trust your instincts, go with your gut, bring in lots of info to him. THAT will help him to determine how to treat you and it will help YOU determine what to do.

You ultimately have to make the decision which stinks because it would be nice if someone could wave the magic wand or spin the dail and tell you the answer... but no..
you have to ask, weigh the answers, and do the next right thing. Even if it turns out to be the wrong thing

IF you have testing showing pos Babs etc take that in with you and just be who you are, scared, confused, worried about losing your doc, scared about your health..throw yourself at his mercy and I bet he will come around. IF not then you have your answer. So have a backup appt with someone else, as a plan B...just in case so you don't freak out too much, you will know there's always another plan...

I nearly died with my first LLMD who has since left BU and is in his own practice and has the freedom to test and tx for coinfections. Too bad so many went down the drain first. I had babs, erh x 2, and bart. He said No testing and what I was taking would cover it anyway. Well that nearly killed me. It took some people speaking up against him to get me to a good doc. Luckily no one shut them up and I am still alive.

You will be ok. YOu sound on top of things, you are listening to your intuition and your body, by having the testing done. You will find your way. It aint easy. But you are not alone. There is support here. Just skip the other stuff.

I also have to respond to that lymesux person saying you "won't be bashed as you didn't say anything bad about an LLMD." Lets appoint that person to head of the "SS Censor Ship"

say what you feel, its part of the experience of being ill, whether or not other people like it. there are enough open minded sensible people on here who will support you.

By the way, everyone is sounding like they're really getting better! Whenever people are on this board a while, you can see them returning to themselves through their writing.
 

Take your test results. Blame your insistence on co-infection testing on a mother/sister/brother/etc. has been pestering you for months to be tested for co-infection because they have a good friend who's a doctor/nurse/etc. and demanded that they harrass you until you get tested.

Then, spring the test results, and state, "I'm so confused now, I don't know what to do". " Can I ever get well ?"
It takes the burden off of him/her of being wrong and puts him/her in the role of healer. Treat it like you never broached the subject before. Using a little psychology may save the day, and the insurance.
 

Email me if you are interested.

I totally agree that once you start dreading a doctor's visit and have to walk on eggshells, it's time to move on.

Godbless.
 

stop being so darn bitter and go somewhere else. You had no reason to pull my name out like that, what I said was the truth - liz did not use her llmd's name and nobody here other than people who know her personally know who it is.

That is what the point is. Your paranoia amazes me.

Liz I apologize for putting this in your post but I couldn't help but say something.

I do hope that you find the right LLMD for you.
 

After making an appointment today with another LLMD, just in case a switch becomes necessary, I did another Lymenet search on bartonella.

After reading through the posts again (I thought I'd read them carefully before, but...) I was surprised to see that my experience was common. Many, many people were on abx many months, often with highly regarded LLMDs, before getting help with bart. It was also usually the patients who requested treatment, and not the doctor who suggested it.

 

Thanks,
Marian
 

My babs test was borderline, but my LLMD treated me for it anyway and I herxed from here to Mars and back again.

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oops!
Lymetutu