I think a friend may have Lyme, but she refuses to test

So, my good friend has been having pretty debilitating health issues for the last two years. They’re increasing in severity as time goes by. Apparently, everything had a very sudden onset, and only continues to worsen. I met with her the other day for coffee, and she told me all about her symptoms:

Extreme fatigue
Heart palpitations and fainting
Joint pain and random dislocations
Migraines
Night sweats
Brain fog
And, she’s been diagnosed with fibromyalgia

She also said that none of the fibromyalgia treatments she’s been on have been helping much.

This sent my red flag up. I was also misdiagnosed with fibro, and those symptoms sounded all too familiar. She told me she’s seeing a cardiologist about POTS, and is seeing a geneticist about Ehler’s Danlos Syndrome. When I suggested she may want to test for Lyme, she got very upset with me and said that just because I have it does not mean that everyone else does.

I know that she’s an adult and can make her own choices and I ultimately cannot tell her what to do. However, I feel bad that I upset her when I was only trying to help. We all know that if she does have Lyme, it’s just going to continue to get worse if she doesn’t seek out the right treatment. Having been there, that makes me worried for her. Is there anything I can do?

Post Edited (amanda_tx1) : 2/11/2019 11:13:36 PM (GMT-7)

amanda_tx1 said...
When I suggested she may want to test for Lyme, she got very upset with me and said that just because I have it does not mean that everyone else does.

I certainly understand her perspective. Some of us do have that reputation.

If it were me, I would remind her that you're simply trying to help, because you care about her and don't want to see her continuing to struggle and suffer.

Second, perhaps mention that whether it's called Fibromyalgia, Lyme, or something else, the label is less important than her getting well. Ultimately, that's what you both want.

Finally, maybe highlight that her current plan doesn't seem to be helping, but you recognize it's her choice to continue and you'll support whatever she chooses.

If you think that could be a contentious conversation, then hand write the message in a card or letter (not an e-mail, text message, or other electronic medium) and mail it to her. Then, drop the subject.

That's just my opinion.

I wish her good luck.

Certainly sounds like babesia could be in the mix as well. I know so many who were misdiagnosed with fibro and it turned out to be chronic infections...

But these are tough and personal subjects. You did your due diligence and have already broached it once, spoken your piece, pushing more than that could risk rupturing your relationship. Health is very personal, and sometimes people need to come around on their own. You can bring a horse to water but can't make it drink. If I suspect lyme/chronic infections might be involved, I usually hold my tongue unless someone asks me for advice in their situation. But sometimes I can't help myself and I suggest it might be worth looking into, but usually I try to avoid that because people sometimes think of this as arrogant and presumptuous on my part, to them it may come across like I think I know more about their health than they do (living in their body day in day out without knowledge of their medical records). It comes from a good place, but people can take it the wrong way. And your friend knows your health issues and history, so if they come around and want to explore it they will know who to ask!

We also can get tied to our diagnoses, it's almost like a comfort thing, to have this framework that we've organized ourselves around. I know if someone came around and was telling me I had something other than lyme/coinfections I'd have a hard time mentally taking it seriously. Not that they weren't doing it in good faith or that their ideas were bad, but it's just hard when you've organized your thoughts around a particular health framework for a long time.