I was diagnosed with Lyme and Babesia 10 years ago and had a second infection in 2019 that left me immunocompromised and disabled.
Fortunately, I am currently in remission and off all antibiotics and antimalarials, but I still need someone to monitor my other medications, monthly immunotherapy infusions, and unrelated conditions (high cholesterol, insomnia, mast cell, etc.).
Do you all recommend that I find a primary care physician/internist or stay with an LLMD?
Every time I've tried to establish care with a well-reviewed non-LLMD since I've been sick, they insist that post-treatment Lyme disease syndrome doesn't exist, that I need to reduce my medications drastically, and/or they make me feel ashamed or defensive.
On the other hand, I don't really *need* an LLMD right now (except perhaps to manage my infusions and Lyme-exacerbated conditions, like chronic pain). Since their focus is so specific, I worry that they won't do as good a job monitoring less serious/complex conditions.
I have tried juggling both types of doctors in the past, and it's felt like they were at cross purposes.
Any thoughts on where I should go from here? I'm in the DC/Metro area and also would welcome any doctor recommendations (or warnings).
Thanks!
Posts: 118 | From Northern Virginia | Registered: Apr 2012
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hiker53
Frequent Contributor (5K+ posts)
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posted
Would your LLMD be able to recommend an internist in your area?
But you would need to be clear with the LLMD that you have varied their care and would like to come back if necessary.
Does insurance cover your LLMD? Money might be a factor.
But I know my last 3 internists (and 2 I really liked including my current internist) don’t have a clue about Lyme and chronic or post treatment Lyme.
Now that doctors have see long haul Covid some of them might be receptive to “long haul” Lyme.
Best wishes.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8878 | From Illinois | Registered: Aug 2004
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Thanks for your reply. My LLMD did recommend an internist, but she's not taking new patients with my insurance.
I can't stay with my LLMD because he has left the area and has become completely unreliable. I'm essentially without a doctor right now.
Sadly, the last internist I saw seemed not to have learned from Long haul Covid.
Posts: 118 | From Northern Virginia | Registered: Apr 2012
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hiker53
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posted
LaniMo,
Sorry to hear that about the LLMD and the internist.
Will pray you can find a good doctor soon.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8878 | From Illinois | Registered: Aug 2004
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
First, you need a primary doctor. Someone close by who can monitor your health, routine blood tests, 6 month checkups and annuals, order tests, referrals to specialist, hospital privileges, etc.
Next, you need an allergist for immunology and mast cell issues. They will order your infusions and it will be insurance covered if you qualify as a diagnosed immunocompromised patient. Also if your disabled, you can get insurance covered nursing care in your home instead of an infusion center or hospital.
Next, if you have pain, you will have to establish yourself as a patient in a pain management practice. Most primary docs and specialists don't prescribe pain meds anymore, including Some LLMD’s.
Since you don’t have Lyme or Babs symptoms, you might not need an LLMD just yet. A lot of LLMD’s just want to treat Tick Infections only. Of coarse it doesn’t hurt to establish yourself at their practice and get a consultation.
Many of us Lyme patients have multiple MD’s due to the destructive nature of Lyme disease. Urologists, Neuro’s, Chiropractor’s, Optometrist, Endocrinologist, Gastroenterologist, etc, etc, etc. They will order the tests and monitor their prospective specialities.
These are organizations that connect you with LLMD’s closest to you. It is a simple e-mail format and they respond quickly.
If you wish, I can send you some names of LLMD’s near you. Let me know. Hope this helps.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Even if you were not in remission I would strongly encourage you to find an internist to monitor other health issues. I did not and left my health up to my LLMD. I didn't expect him to handle my other health issues but I figured since I was getting so many other things monitored I was good to go.
Then I found out I had osteoporosis from my gyn. Finally found an internist and have high cholesterol. And finally someone who is worried about my low WBC.
The key is to finding a decent one.
Posts: 832 | From Somewhere | Registered: Nov 2010
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Thanks for your detailed reply! I'm feeling overwhelmed by the thought of finding so many different doctors -- especially when I have prescriptions that will need refilling in the next couple months.
How would you handle the different doctors' reactions to my long list of medications? I've always had a ton of pushback from doctors wanting to reduce the number of meds prescribed by *other* specialists.
I'm surprised that you recommend seeing an allergist for immunotherapy. My LLMD is the one who has handled this in the past.
What kind of doctor would manage ME/CFS? I take Phentermine every morning for energy.
I will check out the links you provided, and plan to attend a support group later this month.
Thanks again for your feedback --
Posts: 118 | From Northern Virginia | Registered: Apr 2012
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Bartenderbonnie
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Member # 49177
posted
Question. .
You say your old LLMD took care of your infusions. Are you on monthly ivig infusions? Are they insurance coverage? Or are they used off label and cash only? Are your infusions vitamin cocktails out of pocket?
If infusions are insurance coverage, I would recommend a Immunologist. Also for your mast cells.
Next, my primary is an Internist. He takes care of cholesterol, anxiety, Rheumy meds, just the basics, or he’ll refer me to a specialist. And he’s very open to my suggestions so he’s a keeper! He just got me out of jury duty, lol.
As for ME/CFS, not many doctors are taught how to treat. And specialist’s in this field are scare, expensive and long wait times. Many LLMD’s are educated in ME/CFS because most of their patients in their practice HAVE ME/CFS. So I would go that route.
As far as Phenyermine, I don’t have knowledge of it. There are LLMD’s that prescribe adderal for their extreme fatigue patients. It’s something to discuss while making an appointment.
I’ll pm you 2 Integrated Holistic LLMD’s in the Washington DC area for you to call to get info asap for your situation.
Posts: 2977 | From Florida | Registered: Nov 2016
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Bartenderbonnie
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Member # 49177
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Just so we cover all bases, let’s get you some more referrals for LLMD’s.
Make sure to research each LLMD. To do this google for patient reviews or contact your local Lyme support group. Support group members have first-knowledge of LLMD’s in your area and love to help other Lyme patients.
These are simple e-mail formats that you fill out and they respond with LLMD’s closest to you.
Posts: 2977 | From Florida | Registered: Nov 2016
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quote:Originally posted by Bartenderbonnie: Question. .
You say your old LLMD took care of your infusions. Are you on monthly ivig infusions? Yes.
Are they insurance coverage? Yes.
Or are they used off label and cash only? No.
Are your infusions vitamin cocktails out of pocket? No.
If infusions are insurance coverage, I would recommend a Immunologist. Also for your mast cells.
Next, my primary is an Internist. He takes care of cholesterol, anxiety, Rheumy meds, just the basics, or he’ll refer me to a specialist. And he’s very open to my suggestions so he’s a keeper! He just got me out of jury duty, lol. Good man!
As for ME/CFS, not many doctors are taught how to treat. And specialist’s in this field are scare, expensive and long wait times. Many LLMD’s are educated in ME/CFS because most of their patients in their practice HAVE ME/CFS. So I would go that route. A good reason to keep an LLMD in the fold.
As far as Phenyermine, I don’t have knowledge of it. There are LLMD’s that prescribe adderal for their extreme fatigue patients. It’s something to discuss while making an appointment. Yes -- I've tried adderal, but Phentermine works better for me. It's typically prescribed as a diet drug.
I’ll pm you 2 Integrated Holistic LLMD’s in the Washington DC area for you to call to get info asap for your situation. Thank you!
Posts: 118 | From Northern Virginia | Registered: Apr 2012
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Sent you a pm.
Posts: 2977 | From Florida | Registered: Nov 2016
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