Advice for going to Dr. ( tests and Lyme in the records) )

Hi, Lightlife,

I'm in MA, too, and I might know of a primary care doctor who is sympathetic or at least respectful, if you want to email me directly. I have had the best primary care luck with practices that employ at least one functional medicine-trained or integrative medicine-trained doctor, even if the person you see is not that person. I have found people even at community health clinics with backgrounds in functional medicine.

I have appreciated having a LLMD that I can refer to if I disagree with my PCP or need to educate them about something, as doctors seem more likely to respect "My specialist told me to do this" more than "I read online that this was good to do." It's good that you are teasing out what role you want a PCP to play; I think it's good to tell them that at the first appointment - making it clear that you have multiple long-term overlapping chronic illnesses and symptoms, and you want someone to help you with mainstream testing and acute issues. Even if they don't agree with that approach, they tend to be happy that people are coming in for what they consider routine care and will try to meet you halfway to keep you coming back, no matter what their actual opinion is about Lyme.

I know of an LLMD in Waltham is who is also a PCP, and another in Boston, both covered by insurance and easy to get in to see. There's one in Easthampton who is booked for the next year, but his PAs are good. I know of another in Norwood but they are not taking new patients.

Whether to bring up Lyme at all is an interesting question. In this area of the country, most doctors know it's a thing that can mess you up and that the tests are unreliable, but that's about it, so it helps to say you have a Lyme specialist who helped to diagnose you or to say simply that you have a "history of untreated Lyme." You're not looking to your PCP to treat Lyme (unless you see one of the few LLMD PCPs) so arguably it doesn't really matter if they think you have it or not. I can make a case for disability based on chronic fatigue syndrome and fibromyalgia, because I have those diagnoses, too; most of us with Lyme meet all the criteria for them, and they only make mainstream doctors think you're a little nuts instead of a lot nuts. ;) Admittedly I don't know much about disability benefits for Lyme, but I don't know anyone who has gotten benefits for Lyme disability. I would not try, for all the reasons you imply. I would be very interested to hear from others how a diagnosis affected their insurance. I assume you are hoping for long-term abx paid for by insurance? I hope someone else has insights for you there. This has never been an issue for me because my treatments have not involved abx or anything else that insurance ever covers.

Another option is to explain that you are wary of how having Lyme noted in your records might affect insurance in the future, and ask that you discuss what gets included and how it's worded to make sure you're on the same page before the practitioner enters any information about it into your records. In my experience, doctors don't believe Lyme is relevant (if infection isn't acute), so they don't include it in my records no matter how many times I refer to it.

I could go to the doctor and describe myself perfectly without ever saying the word "Lyme," just by naming all the conditions and types of dysfunction I experience. The literature for most of my diagnoses lists "infectious disease" as a possible root cause, so it's fine to bring that up if you want to discuss addressing an ailment through immunity-boosting or antimicrobial treatment. I guess this is a long way of saying that I don't think they need to know that you frame your illness as being cause by tick-borne pathogens unles you know you have a knowledgeable practitioner. They are not going to treat you for Lyme unless it's a short course of abx for a new infection (again, unless they are one of the rare LLMD PCPs) so filling them in on your perspective (without an LLMD to back you up) might do more harm than good. Sometimes if I see a doctor who challenges something about the way I conceive of my illness, then I feign open-minded surprise and ask what their "better" explanation is; sometimes they have an idea or two, which honestly I'm happy to explore if I have not already done so. I can appreciate a doctor who is agile-of-mind and genuinely diagnostically curious, after having seen so many who are dismissive and intellectually lazy.

When I see a new practitioner of any kind, I take with me a printed document containing the following: my reason for coming in, what I hope for from the visit (usually testing or advice), medication allergies, a list of all supplements and dosages, symptoms from the past month, diagnosed conditions, current treatments, and other relevant notes (dietary restrictions, date of last menstruation, etc.). This can really help take the pressure off for us both. I usually include Lyme at the bottom of the diagnosed conditions section because, in terms of PCP purview, it's not all that relevant. (I usually say "tick-borne infections" or list the Latin names, in case they have a knee-jerk invalidation response to the L word.) I need them to know that I have MCAS, dysautonomia, chronic fatigue syndrome, HPA axis dysfunction, etc. because those things describe how I am feeling, so I emphasize those. Lyme affects us all so differently and is remedied so differently depending on the person, so saying I have Lyme doesn't transmit that much helpful intel, as far as I can tell. It's relevant if you're looking for prescriptions like abx, of course, but you should not be looking for Lyme abx from a PCP who isn't LL.

Now, a lot of mainstream folks have been clueless but still very respectful. I would take that a hundred times over a doctor who knew a lot about Lyme but didn't listen to me about my particular case. What I'm about to say is a huge generalization, but PAs and NPs at integrative or functional medicine offices seem to have more open minds and to be more responsive to what I want from them, compared with MDs, and they have the advantage of being more likely to be covered by insurance and more responsive.

The only way to be CDC positive is with certain reactive bands on a Western Blot blood test. You definitely can get a diagnosis from an LLMD, based on other testing or on symptoms alone, without being CDC positive.

In terms of tests to ask for, unfortunately there are a lot that only independent labs do right, and most PCPs are not able to order tests from independent labs, even if you can pay out-of-pocket. The labs you will want to request probably depend on your symptoms. A decent doctor, no matter how ignorant about Lyme, should know to test a chronically ill person for basic nutrient deficiencies (iron, D, magnesium, B12, etc.), CBC, CMP, cortisol and thyroid, inflammatory markets, etc. through Quest or LabCorp, and also do a basic neuro exam and EKG baseline. I have not had any trouble getting an MRI covered if I have any pain or neuro issues. If they use independent labs, though, then I would opt for comprehensive stool testing from Genova, multi-point salivary cortisol and a full hormone panel, food sensitivities, autoimmunity markers, mycotoxin testing from Great Plains, and testing for various infections (my fave is DNA Connexions, but that is controversial).

I'm sure I have left things out, and I'm not sure I've been helpful, but I hope something in my rambling was useful. Good luck! I hate that going to the doctor feels like going into battle or making my case in court. That's the opposite of how health care should be!

You can always order tests through requestatest.com or sites like it. I use them for my liver and kidney tests they are less expensive then taking the order from my LLMD and going to a lab and using my insurance. She writes the order and I just reorder them through those sites and pay out of pocket.

I had no idea you could get tests ordered this way! So cool! Thanks for the tips.

Other ideas I forgot in my earlier (far too long) reply were to go to the CVS Minute Clinic for vaccines; I did this last year when I got a big dirty gash on my leg and wanted my ten-year tetanus booster ASAP. They bill insurance and give you vaccines and basic check-ups, no questions asked.

Also I used to have a great urgent care location near me at a community health center. There were several good MDs and PAs on staff there, so they were sufficient for strep tests, basic blood work, ordering time-sensitive imaging like ultrasound, etc. I still had a PCP but I almost never could see her same-day because she only worked three days per week, so I ended up using urgent care a lot more and was grateful to have a good one.

KRae3, I see your email address isn't enabled, so I can't email you, but if you would like to email me directly, then I would be happy to chat about MA doctors and other resources! Fine if not.

I'm pretty sure Lyme is in my medical record and I hate it.
It puts a target on you for life.
I can't stand the medical industry the way it is.