How do you know it's time for a new doctor? (Lyme disease)

[Libby2563]

I was diagnosed with Lyme disease two years ago. After a course of doxy from my GP didn’t resolve it, I started going to a practice that is supposed to be Lyme literate although they do general internal medicine too. Almost a year later I still couldn’t stop oral antibiotics without my symptoms returning. I made an appointment with a new, extremely well-known doctor (Jemsek) who would be significantly less convenient, but cancelled it when I found out the young doctor I had been seeing was leaving the practice and I would become a patient of the older, more experienced doctor. I thought it was worth giving him a shot.

But here we are 9 months later and I’m still in the same position. A couple months ago I was able to stop oral antibiotics for a few weeks and I was so happy, but then my symptoms came back. I’ve been on probably 6 or 7 different antibiotics, up to 4 at the same time, but everything seems to work about the same and I still can’t stop taking them.

Is it time to try a new doctor? My hesitation, other than the greater distance and need to take time off work for appointments, is cost. Just the initial cost of switching would be about $1500-2000 and every follow-up is also more expensive than my current doctor. I have good insurance but because it’s Lyme disease and the doctors generally don’t participate with insurance, the reimbursement I receive is pretty limited. If it would make me healthy I’d happily pay the difference though, and I can afford it.

I wonder if I should speak with my current doctor first and press him for a long-term treatment plan. I feel like they’ve basically been doing the same thing with me for 2 years and it’s not really working. I’ve tried having that conversation with him before but there always seems to be a reason to give the practice one more chance (“Let’s try this other antibiotic, or add these herbals,” or whatever.) I have an appointment with him on Wednesday that I plan to keep. Can’t hurt to have the conversation, right?

What say ye, is it time to move on?

[LookmaNohands]

I have used Dr. Heyman in Aldie, VA. I used the Cowden support program and IV vitamin C.

Worked for me.

[AKB]

Have you seen a rheumatologist? Read the guidelines from the Infectious Disease Society of America and the Centers for Disease Control. My elderly mother had Lyme last summer. She had a known tick bite followed by a Lyme rash followed by a swollen knee. Her doctor did not give her the full 4 weeks of doxycycline. The orthopedist who she saw gave her an injection of steroid into her swollen knee. Next, her hand swelled. She finally saw another internal medicine MD who gave her 4 weeks of doxycycline and then sent her to a rheumatologist, per the guidelines, because she was improved but not normal. Her ESR/send rate blood test was elevated. The rheumatologist diagnosed polymyalgia rheumatica secondary to Lyme. She gave her a short course of prednisone. My mother is finally back to normal.

[horsegal301]

If you feel like a doctor isn’t helping or truly listening to you and has your best interests at heart, it’s time to move on. Seems like you’re on the right track if you’re already looking.

I would be hesitant in going to “well-known” doctors and thinking they have you at the top of their list, because I personally haven’t seen it pan out that way. Often times they’re even worse with the “cattle move” aka moving patients in and out as fast as possible just to get numbers instead of actually taking the time to see and understand your situation.

[red_mares]

Not Lyme, but my experience with a top doc was the opposite. The doc who screwed up my foot was an in & out type place. The nationally recognized practice is fantastic.

Just because you are evaluated by a new doc doesn’t mean you can’t go back to the old one or have to switch. Don’t make a big deal about getting a copy of your records.

When I changed ortho’s I tried not to burn bridges. The one doc could kiss my posterior, but the other in the practice I still liked. The new doc was twice as far away. I have considered going back for a different set of eyes looking at the problem again.

Since our insurance plans change annually now, the first thing I check is which docs & drugs are covered, then I look at price. Last year out of 6 or more plans, only 1 covered both.

[2miniB]

If you feel you haven’t made progress in 2 years, I’d say it’s time to move on. You can email ILADS for a list of Lyme literate doctors in your area. I’ve been dealing with Lyme and coinfections and have made progress with the the protocol I started out with (Buhner’s), with tweaks along the way.

It’s time to look at other treatment options, and also what underlying issues are keeping you from healing. Could be candidia, viruses, mold, MTHFR mutation, adrenal fatigue, hormone imbalance, heavy metal poisoning, etc. I didn’t believe in some of this stuff, but addressing it (like adrenals, hormone balance, heavy metals) has made a huge difference for me. Silver fillings have mercury, which is toxic. After I had my filling removed and replaced, I made a huge amount of progress.

Unfortunately, rheumatologists and IDSA docs can do more harm than good. Rheumatologists use immunosuppressant drugs, which is the last thing you want with an infection. The IDSA docs I saw 10 years ago are the reason why I’m back in treatment. I wasn’t treated long enough and the two coinfections I have were ignored.

[searching4truth]

Let me start by saying that whatever you do- do NOT take steroids (prednisone) when you have Lyme. It is like pouring gasoline on a fire. It can be deadly.

I would also say that it’s definitely time for a new doctor. If you had just contracted it, you could possibly be treated by the type of doctor you have been seeing, and you might be able to get healthy. But 2 years in, you need someone who is very highly educated in the treatment of Lyme. It’s an incredibly complicated illness to treat- antibiotics are not enough. They are critical, but will not get you healthy without also addressing all the other components- like heavy metals and mold toxicity. Have you been using cyst busters, or addressing biofilms? These are both mechanisms of the Lyme bacteria to avoid and trick the immune system, and to hide from the antibiotics. If you do not address these while treating, no amount of antibiotics will help, because the bacteria is WAY too tricky.

I have had Lyme for 19 years now, and was finally diagnosed 5 1/2 years ago, after a 6 month course of steroids nearly took my life. I have been on antibiotics and many MANY other medications and supplements, and finally hit remission last summer. Unfortunately, I just relapsed, and my Lyme doctor just retired in January. I found a new Lyme doctor and had my first appointment with her this week. For me, the co-infections are worse than the Lyme. Have you been tested for co-infections? You will never get over Lyme Disease if you don’t treat those too.

Your best bet, in my opinion, is to email ILADS (International Lyme and Associated Diseases Society) and get a list of Lyme Literate doctors in your area. Call each one, and find one that is a good match for you. I know the financial burden of treating Lyme is tremendous. But if you treat it correctly, you can get into remission, and you can live a normal and healthy life. You will most likely go out of remission every so often, if you become over tired or over stressed, or your immune system is overworked in some way. But when you do- you go back to the doctor and treat again, for a much less amount of time, and you are back in remission again. In my mind, it’s worth every penny. If you can afford it, it should never be a question of “should I?” If you can afford it, then YES you should. You deserve to be healthy. You deserve to have your life back. And the only doctor that can get you there is a doctor devoted to treating Lyme. One that has gone through extensive training for Lyme treatment, and most likely, only treats Lyme patients. Let me know if you have any questions- I am an open book and am more than happy to share what has and has not worked for me.

[Libby2563]

Just remembered this thread and thought I would update. Thank you all for your advice!

I did end up becoming a patient of the Jemsek Clinic in DC. It was quite expensive for the initial appointment and is less convenient than my old doctor (who was 5 min from work), but I think it is well worth it. Follow-ups actually don’t cost that much more than my old doctor. I have been progressing through their protocol and after the phase I’m in right now, I will be starting a maintenance phase. Now I’m frustrated to have waited so long to switch! The kicker is that when I cancelled my appointment with the old doctor and never rescheduled, no one ever once checked in with me. I thought that was a bit strange that they would let a patient just disappear without finding out why and whether you’re okay? Maybe not?

Interestingly, the most effective thing Jemsek suggested was a gluten-free diet. I almost cried (“But–but–but pasta! And bread!”) but cutting out gluten actually eliminated the low-grade body stiffness that I’ve been experiencing for so long that I forgot it wasn’t normal. I could feel the difference within 3 days and if I eat a significant amount of gluten, the stiffness returns the next day. It’s interesting because I don’t get any of the stereotypical GI symptoms of gluten intolerence, but it does seem to be inflammatory for me. Anyway, just putting that out there in case anyone else finds it useful it. I have found a ton of GF substitutes that are actually very good, and I’m happy to share if anyone wants (PM me though because I may not check this thread again).

[Where_sMyWhite]

Libby, thanks for the update and glad you are happy with your choice to switch. :encouragement:

As for a practice calling to see why you haven’t rescheduled, if they are anything like my flock of different doctors, the front end staff is overwhelmed without having to add on followups on why a patient didn’t reschedule. I don’t think any of my Drs’ offices would call (maybe, just maybe my PCP DO, but the rest, doubt it).

Check in periodically and let us know your progress.