I have been seeing an LLMD for 3 months now (Dr. R in NYC). I'm not having much luck and wondering if I should switch or if I'm just being impatient.
Short version of the story is that my lyme was undx for one year and I mostly have very bad neuro symptoms that are hellish!
I am positive for lyme through IGeneX and also showed the mystery bug bartonella like thing or whatever it is on the fry smear.
At my first appt. with Dr. R. I was started on omnicef and zithromax. I had tons of blood drawn and a SPECT scan ordered.
My second appt. was 6 weeks later. My IGENEX showed lyme but SPECT and fry not back yet. Dr. R. added mepron and arteminisin to the mix suspected I had babesia (not sure why).
I was kind of annoyed my other tests weren't back since it had been six weeks. (I later found out my SPECT showed mild to moderate hyperfusion.) But I only found out about this and the fry test after calling and calling and calling (with no follow up).
So I've been on omnicef and zith for 3 months and mepron and arteminisin for 2. I really don't see much improvement.
My next appointment is a phone consult in Jan.
My sister lives in CA and also has lyme & co (we got infected at the same time). She got all her blood work back through IGENEX within her first month knew she had lyme, babs and bart and is being treated for that as well as HHV6 and detox.
She says she sees improvement already!
She is telling me that I should fly out to CA and see her doc.
The whole idea of flying across the country is making me tired just thinking about it! Not to mention the cost.
I know of other LLMDs in the area but I don't want to have to wait another 2 months to pay a large amount of money and feel like I'm not getting enough feedback.
But I feel like my doc is not following up very well and I don't know that I'm on the right track.
Plus I paid $900 for the first visit and $450 for the second so I've already invested all this money and time.
Am I being impatient? Should I switch? I'm just so jealous she is feeling better and I feel like I'm getting nowhere.
Sorry for the long story!
Posted by feelfit (Member # 12770) on :
Probably a little impatient Lars. Your doctor is one of the best and a truly concerned doc. I ahve not seen him, but have benn told by many others that he is EXCELLENT.
Three months is nothing in treatment as you know. Ultimately, the choice is yours, but I wouold not drop a well regarded doctor after only 3 months.
Feelfit
Posted by lpkayak (Member # 5230) on :
dr r is a good doc.
3 months is not very long-took me 3 yrs
its expensive to switch around -i'd give him a minimum of a year and maybe more
Posted by Geet3721 (Member # 15751) on :
I am seeing the same doctor and I am around 3 months of treatment too, I often feel the exact same way you do.
I am going to stick it out a little longer and hope for the best mostly because who can afford to see a different LLMD and the few others I tried to contact are not taking new patients.
Hang in there! Let me know if things change.
Melissa
Posted by Lymetoo (Member # 743) on :
Took me a year before I noticed ANY improvement....two yrs before I began turning the corner.
You could have [and prob DO have] a different strain of Lyme than your sister.
Be patient! Dr R is good.
Posted by seekhelp (Member # 15067) on :
Wow, thanks for the feedback. That's depressing as it was one of the docs I was considering seeing. I can get those two Abx from my local LLMD. The CA doc sounds more like what I'm seeking.
However, I agree with all others about the treatment time being too short to make a determination as to effectiveness. Yet this has nothing to do with the doc's lack of responsiveness giving you test results. That bothers me a lot. I HATE when docs are slow. It tells me I'm not important to them.
At $900 for a visit, I expect the VERY VERY VERY best and comprehensive treatment protocol addressing all issues including de-tox AND quick response. Nothing less is acceptable when a doc tosses that monstrous price tag at a patient.
Posted by nomoremuscles (Member # 9560) on :
Your doc was my first LLMD. He is very good, caring, smart, and willing to work with the patient. If I were you I would give it a bit more time. If you don't think a treatment is right, or working, he is very approachable and willing explain his methods, and to listen to any research you may have dug up. In my experience, he looks at patient care as a team affair, and is at his best with an educated, proactive patient who understands this disease and who helps chart their own course of action.
Everyone has to remember, while we'd like our doctors to be all things, they are human and each comes with a complete and specific set of attributes and flaws. Sometimes it's important to remember none of them are perfect (at least none of the three I've seen), but each has their strong suits -- some are better fits with particular patients than others.
That said, three months is not very long. Give it some time. Maybe get some specifics from your sister's trx, and, if they seem to fit your case, you can mention them at your next phone conference and see what he says.
Posted by Lymeorsomething (Member # 16359) on :
Lars, I can relate but keep in mind that everyone is different so don't be tempted to compare yourself to your sister. That can be a futile endeavor.
I'm seeing a well-known LLMD too and have made little progress at the 3 month mark. Without early treatment the 'chetes set up shop and it may take an effort to suppress their forces.
Even so I'm all for changing docs when the time is right. If you feel you're in the same boat in a couple of months, consider trying something different. I know that I will.
Posted by lymednva (Member # 9098) on :
Before changing LLMD's, since I know that is expensive and means starting all over again, I would address this with your current LLMD.
One reason I mention this is that many here are saying you have a great LLMD. I know I have had concerns about my own LLMD at times, but when I have been open with him and discussed the issues we have realized it was mostly a miscommunication.
I love and respect my LLMD. I would not consider changing unless I had very good reason. He has been learning as he goes, but is becoming a top LLMD, imo.
At my last visit with him he changed my tx and put me on exactly the protocol I would have suggested myself, but I didn't have to. We had both been reading the same info, I guess!
Posted by lar08 (Member # 16766) on :
Thanks everyone for your responses. I really needed some support!
I came home and had an absolute screaming and crying fit with my dad on the phone.
I told him I'm having a really hard time working and thinking that I might need to go on disability.
He told me if I can get out of bed I can work.
He then said, if I'm not improving I need to DO something about it rather than want to sit at home and cry.
He said that I need see my sister's doctor and then I will get better. He said if I do that and treat "my depression" I'll get better. (I'll give him that--I am depressed but it's because I'm so sick!)
I tried to explain why this isn't the case and I won't just get better but he doesn't get it. I told him my sister and I have completely different symptoms and degrees of sickness.
Anyway, I think I will stick it out with Dr. R. but I think I need to be much more vocal about my concerns though which I'll admit I'm not good at doing.
Ugggh!!!
Posted by Lymeorsomething (Member # 16359) on :
By all means, be vocal and express your concerns about your slow progress and maybe your doc will step it up a notch.
Unfortunately, there are not that many real-life Dr. Houses to figure out all that ails us so we do have to resolve ourselves to a longterm battle most of the time. Hang in there! Posted by bettyg (Member # 6147) on :
did you buy the dvd, UNDER OUR SKIN?
show it to him and be there the entire time, and then discuss it with him afterwards.
best wishes! Posted by david1097 (Member # 3662) on :
I will be rather blunt here, so disregard if you you have a tendencey to get upset by these things.
The question is not did I get the information fast enough, the question should be, did the information make any difference in the treatment protocol?
What would you do with the results anyway? Most of the lyme related ones are not definative, only suggestive. If you got the results like the one indicating hypoperfusion how would you modify the treatment, how would you get the drugs? How would the change in treatment affect the Dr prescribed one? etc.etc.
I am sure many of the tests are done to rule out OTHER things that you might have. Not hearing back is a good sign. They certainly would have called you if something else turned up. On next vist ask what the result were to make sure they did not lose then (which happens sometimes). Beyond that I would leave it. Most Dr's usually has one of the staff review all incoming test results and flag it for the Dr to follow up. If nothing significant or out of the ordinary then no follwop up nad it just gets added to the history file.
In my opinion, you pay the money to a Dr to gain access to the experience the Dr has, not how quick they relay the +/- results to you. If you want a Dr that will tell you what you don't have, there are lots of infectious disese Dr's who will do that. And they will do that pretty quick.
-On the treatment progress-
I am pretty sure the same bug that infected your sister was not the same one that infected you. The result is that not even considering the other things you may have been exposed over your life, the pathogens in the bug could be quite different. The type and progress during treatment would then be expected to be different.
I know Lyme patients that FULLY recovered with 4 weeks of IV where as other have taken years and still not recovered fully. The disease complex is quite variable and it is difficult to predict the course.
Sorry to state things this way but I have seen lots of people that have the same complaints you have expressed. I aways restate the above as it seems to make things clear (although some take offense).
It is always possible to change Dr's but it is unreasonable to expect that one Dr' can given miracle results when you are being treated for the same thing using the same methods.
Unforutalely with Lyme it often takes as long to get out of the mess than it did to get into it in the first place.
Posted by lpkayak (Member # 5230) on :
i feel like kicking your dad in the butt. but it would probably make more sense to get him to see under out skin or the chonicle program. you are too sick to have to take that and educate him too. you need support.
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