Has anyone considered or received a 2nd opinion from another LLMD?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 171
   Posted 4/11/2018 5:55 PM (GMT -6)   
I have a decision take make in the next few days. I have been treating with LLMD Dr. S in Bridgeport, CT since being diagnosed with Lyme in Oct 2017. I have made good progress overall, save for a nightmare 2 weeks post-mepron in February of this year. I am continuing to treat with him at the moment, but without getting into specifics, there are a few care-related issues during this time that have made me consider getting a 2nd opinion, and during those 2 terrible weeks in February where I thought I was barely clinging to life, I made an appointment with Dr. K in Orange, CT, who treated my friend's sister and is a neurologist affiliated with Yale University. The soonest appointment was for 4/19, and I still have it scheduled.

I am doing much better now than 2 months ago when I first made the appointment, but being a medical professional myself, I always consider 2nd opinions to be valuable in many cases. While Dr. S is 350 for the initial 1hr consult and 250 for each follow-up, Dr. K is $1500 for the initial 2hr consult, then 500 for a follow up 3 weeks later. I am leaning towards keeping the appointment but wanted to gather some opinion's from the forum population here.

If I am allowed to be a little more specific with my concerns (and if not, please mods let me know or delete this section), my current LLMD:
1) never really discussed how important detoxing is (I learned that all from here!) or had much for supplement recommendations beyond magnesium and methyl b12
2) prescribed me a medication I did not need (Cortef/hydrocortisone) based on old test results. I had a low PM cortisol on one test in Jan. (I got additional bloodwork done from my PCP where cortisol, thyroid, etc were all fine and then tossed the prescription away without having taken a single pill)
3) prescribed me a medication that had a level 1 interaction with medication I was currently taking without making me aware (I found out when a giant warning paper was stapled onto the prescription when I picked it up from CVS). It was for Diflucan, which cannot be taken with Coartem at the same time (though apparently you can take it on different days... I do not feel like experimenting). The diflucan was also prescribed before my most recent Quest bloodwork has come back (been 2 weeks and still waiting as of this post) to determine if I even have a candida issue. My most recent test was 2 months ago and it showed i was slightly over the threshold (1.2 for igA and igM with <1.0 being the reference).
4) I am the one who had requested igenix testing in Dec which revealed Babesia, and I am the one who requested igenix testing recently which revealed bartonella. I feel like the Igenix options could have been offered to me from the first appointment which may have detected the co-infections sooner and allowed me to address babs earlier.

So, while I feel like I'm on a good abx and supplement regiment now, a lot of it is due to my own research and advocacy, and I feel like a 2nd set of eyes couldn't hurt me, except for my wallet/the super high price for this other LLMD. What would you do?

physedgirl09
Regular Member


Date Joined May 2017
Total Posts : 442
   Posted 4/11/2018 6:09 PM (GMT -6)   
Hi!! Well I can totally relate to your story...I've been with my llmd since June 2017...he never addressed detoxing, diet, or supplements... I had a positive babesia test, yet never put me on mepron or malerone.... It's now April and i have an appt in 2 days at the jemsek clinic in Washington dc...I will be firing my current llmd n making dr.j and his crew my new team of drs....
So my opinion is that your making a great choice in seeking out another opinion... You have to be happy with who your with!!
Good luck to you!
Symptoms since July 2016. Very mild: slight dizziness but nothing to call the doctor about.
February 2017=flu like symptoms; felt like i was dying from February to June. Tested positive for active EBV.
June 2017= tested western blot: reactive lgm 23 lgg 41 & 66
Started ABX treatment in June to present with llmd
functioning at about 70%. determined to get to 100%

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/11/2018 6:32 PM (GMT -6)   
1) never really discussed how important detoxing is (I learned that all from here!) or had much for supplement recommendations beyond magnesium and methyl b12

Many LLMD's don't discuss detoxing much

2) prescribed me a medication I did not need (Cortef/hydrocortisone) based on old test results. I had a low PM cortisol on one test in Jan. (I got additional bloodwork done from my PCP where cortisol, thyroid, etc were all fine and then tossed the prescription away without having taken a single pill)

If the results were more than a month old - he should have run more tests IMO


3) prescribed me a medication that had a level 1 interaction with medication I was currently taking without making me aware (I found out when a giant warning paper was stapled onto the prescription when I picked it up from CVS). It was for Diflucan, which cannot be taken with Coartem at the same time (though apparently you can take it on different days... I do not feel like experimenting). The diflucan was also prescribed before my most recent Quest bloodwork has come back (been 2 weeks and still waiting as of this post) to determine if I even have a candida issue. My most recent test was 2 months ago and it showed i was slightly over the threshold (1.2 for igA and igM with <1.0 being the reference).

I don't really know what a 'level 1 interaction ' is. But, I'm assuming they shouldn't have been taken together.
What did the Dr. say when you discussed this? And did the Pharmacist fill the script anyway?



4) I am the one who had requested igenix testing in Dec which revealed Babesia, and I am the one who requested igenix testing recently which revealed bartonella. I feel like the Igenix options could have been offered to me from the first appointment which may have detected the co-infections sooner and allowed me to address babs earlier.

The clinic I go to now don't bother with co-infection testing - because all three B's are treated anyway. Many LLMD"s don't bother testing for co's - they treat based on symptoms...or eventually treat the three B's.


My llnd never treated me for Babesia...and I think it should have been done in the 3 years I was in treatment - as I had plateaued after lyme and bart treatment.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

ArtAngel
Regular Member


Date Joined Mar 2016
Total Posts : 325
   Posted 4/11/2018 6:37 PM (GMT -6)   
I have had health problems over a long period and bit by bit I have learnt more and more about my body and what it needs.
Second opinions are a good thing and doing research and being proactive on your own behalf is even better.
I know some people do find the right doctor and the right treatment straight away.....and good on them. For most of us - lyme being complex and having a unique expression for each individual, I think you are doing the right thing. Go for it and look further, read more and try alternative strategies too.

Mark FW
Regular Member


Date Joined Dec 2017
Total Posts : 131
   Posted 4/11/2018 6:45 PM (GMT -6)   
I just switched LLMDs. My first one was really good with supplement support, detoxing. In short, I'm on the Grundy intensive care diet and it really helps the Herx. Issue with him is after 8'weeks of doxy and Tinizode he really did not have a stratigy.

The new LLMD in found is what I would consider a expert. She only treats Lyme and coInfections, and was quick to identify a bartnella rash right away. Now I'm on abx to target that coinfection.

So my recommendation is yes. Find the best in your region. If you are not treating this aggressively ang getting progesss each month your treading water.

I also think each one has their specialty. I'm glad I was exposed to my first,, but I'm really glad I sought out another.

Again, find the ones that only treat Lyme. Btw, she in only a NP but out of the 25 mds and Speclist, Rush , Northerwestern U I saw in the past 6'months, she s the real deal.

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 171
   Posted 4/11/2018 6:54 PM (GMT -6)   
Girlie said...


I don't really know what a 'level 1 interaction ' is. But, I'm assuming they shouldn't have been taken together.
What did the Dr. say when you discussed this? And did the Pharmacist fill the script anyway?

.


Level 1 means potential for fatality or life-threatening side effects if taken together.

The Dr. did not discuss this with me at all - which is a major red flag. The pharmacist will fill the prescription but they have to notify you of the interaction. (There are some patients with many diagnoses/ co-morbidities who have to take these drugs together despite the risks)

Coartem and diflucan taken together can cause a fatal heart arrhythmia. This is something that should have been told to me at the appointment. Also, the diflucan was given before the most recent bloodwork has come back.

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 171
   Posted 4/11/2018 6:58 PM (GMT -6)   
My current LLmD is very aggressive with ABX treatment which has gotten me better, but the issues described in my above postings are enough To give me pause. Also, whenever I see him he never remembers me, what meds im taking, etc. half the appointment is retelling the story to bring him up to speed.

I kid you guys not, I just got a random follow up phone call from my LLmD asking how I was doing 20 min after posting this thread. After he asked how I was feeling, he then had to ask what meds I was taking. Never remembers.
Sx began Aug 2017.
Dx with Lyme 10/13/17. Rx with Doxy/Zith/Tindamax x 2-3 months (80% improvement)
Dx with Babesia Duncani 1/2018. Rx with Mepron/Zith/Doxy x 1 month
2 week break due to worst herx/experience of my life
Coartem/Zith/Doxy 2/2018-3/2018 (60% improvement)
Coartem/Zith/Mino beginning 3/30/18
Dx with Bartonella 4/7/18

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2302
   Posted 4/11/2018 7:14 PM (GMT -6)   
I changed after initially treating for 11 months with my first llmd.

I am grateful for the initial treatment which knocked back my infections so I could at least function, but the continued treatment never seemed to address the different symptoms and the other infections I was presenting with.

I was seeing a well known experienced llmd. but felt my concerns about the emerging other coinfections and treating them were being ignored.

Follow your gut feeling about this, that's what I did and I am very happy with my current choice and treatment plan.

Its our health and we sometimes need to take control of the path we are on.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/11/2018 8:36 PM (GMT -6)   
Solaris719 said...
Girlie said...


I don't really know what a 'level 1 interaction ' is. But, I'm assuming they shouldn't have been taken together.
What did the Dr. say when you discussed this? And did the Pharmacist fill the script anyway?

.


Level 1 means potential for fatality or life-threatening side effects if taken together.

The Dr. did not discuss this with me at all - which is a major red flag. The pharmacist will fill the prescription but they have to notify you of the interaction. (There are some patients with many diagnoses/ co-morbidities who have to take these drugs together despite the risks)

Coartem and diflucan taken together can cause a fatal heart arrhythmia. This is something that should have been told to me at the appointment. Also, the diflucan was given before the most recent bloodwork has come back.


Is the Coartem/diflucan risk for the Long QT syndrome?

I know that azithromycin has it as well...and LLMD's prescribe it with Diflucan together...but perhaps the Long QT risk isn't as high as the Coartem/diflucan risk

My llnd would ask me every single appt. "How's your fatigue?" And I'd say, "I don't have fatigue"

I never did have fatigue...and it really p-ssed me off that he didn't review my file before our appt.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2040
   Posted 4/11/2018 8:52 PM (GMT -6)   
I can totally relate to the doctor disappointments. I feel like I'm paying them, but I'm the one doing most of the thinking and working. I've met very few people in this life that I would trust to think for me, because I know they are thorough and responsible. None of them were doctors. I've only seen a couple of doctors in my life who really impressed me, but that was before Lyme.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/11/2018 9:05 PM (GMT -6)   
And to answer the title of your thread question: Yes, i have recently switched from my LLND to the J Clinic.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/11/2018 9:07 PM (GMT -6)   
WalkingbyFaith said...
I can totally relate to the doctor disappointments. I feel like I'm paying them, but I'm the one doing most of the thinking and working. I've met very few people in this life that I would trust to think for me, because I know they are thorough and responsible. None of them were doctors. I've only seen a couple of doctors in my life who really impressed me, but that was before Lyme.


I know what you mean. I don't put blind trust into anyone....including Dr.'s.

They've gotten it wrong way too many times...with family members.
Thank God for the internet....
shudder to think of what I'd be dealing with now...without it.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

trekkar
New Member


Date Joined Jun 2018
Total Posts : 18
   Posted 6/25/2018 6:14 PM (GMT -6)   
Solaris719, I'm in CT and looking for a 2nd opinion as well. Did DR S. start treating before the positive test? Or do you know if he is willing to with out a positive test? I think I read that Dr K. does not but that could be wrong. My current llmd only has me on 250mg of Azithromcyn and Malarone so I feel I need to step it up.

Noah2112
Regular Member


Date Joined Dec 2017
Total Posts : 127
   Posted 6/25/2018 6:51 PM (GMT -6)   
I think if you aren't satisfied with your level of care, switching providers could be very good for you. I see Dr. G in south Florida and he's always been very informative and helpful. He's discussed diet, supplements, all of the tests needed, and has always returned my phonecalls within several hours whenever I really need something (which I do my best not to abuse unless it's very important, since he goes out of his way to respond quickly). There are some fantastic doctors out there and if you aren't happy with yours, a second opinion could be very valuable! Yes, it's expensive, but your health is precious too.

Lvg123
Regular Member


Date Joined May 2016
Total Posts : 155
   Posted 6/25/2018 8:21 PM (GMT -6)   
I would definitely be seeing a new doctor. Um...not knowing drug interactions? That's one of the most important parts of being a doctor. It is a high price but it is worth it when you know you are in good hands.
Not sure when I was infected with Lyme Disease, but I started to get very sick in June 2015 (6 months after giving birth). I progressively got worse and worse and could no longer do my job and was fired in March 2016. I went to many doctors and no-one could diagnose me. Finally I got an Igenex test and I was IGG was positive for Lyme (not IGM). I started treatment in December 2016.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, August 20, 2018 7:37 AM (GMT -6)
There are a total of 2,994,644 posts in 328,155 threads.
View Active Threads


Who's Online
This forum has 161294 registered members. Please welcome our newest member, Fred700.
251 Guest(s), 10 Registered Member(s) are currently online.  Details
suppwife, IamCurious, Jackiema44, Nervous nelly, Tudpock18, SharonZ, bubbatc, fjdrill, iPoop, Lanie G