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joint pain as primary (or only) Lyme symptom?

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Posted 3/12/2019 2:53 PM (GMT 0)
It's been a while since I last posted. I started seeing a new LLMD practice last year and, after months of obsessively researching and reading and worrying, tried to sit back and just trust in the recommended treatment. (I'm seeing a nurse practitioner in the office of an LLMD in Wilton, CT.)

I seemed to improve for a while, but my symptoms tend to fluctuate over time, so it's often hard to tell whether a treatment is working. The improvement faded after a while, and I'm back to the nagging worry that is always in the back of my head: the worry that maybe my rheumatologist is correct. She believes that my symptoms will not improve with Lyme treatment, but are instead signs of an unidentified autoimmune disease that I need to be treating aggressively.

Anyway ... I'm kind of embarrassed to be asking this, because I'm sure I've already asked similar questions in the past ... but I was wondering if anyone here has joint pain/arthritis as their main Lyme symptom -- and, if so, have you had any relief with Lyme treatment? Obviously, I know that arthritis is a classic Lyme issue -- but I've been wondering how many people recover from it once it becomes sort of chronic. (The few people I know in real life who've successfully treated a longstanding Lyme infection dealt more with neurological symptoms than with joint pain.)

My joint pain mostly takes the form of pain in my hands, and sometimes in larger joints (elbow, wrist, ankle, knee). Lately it's also in my feet a little. I've apparently developed some bone spurs or osteophytes on my thumb and finger joints ... they don't look too bad yet, but of course I'm hoping they don't get worse. I'd be really interested in hearing about others who've dealt with similar issues.
Posted 3/12/2019 3:08 PM (GMT 0)
Hi could you give LDN a try?
Posted 3/12/2019 4:42 PM (GMT 0)
Lily - I had joint pain as a symptom - but not as my main symptom because others have been worse...and the joint pain went away with treatment.

Yes, it goes away with treatment... from my experience...it's not one of the more difficult symptoms to 'lose'.


Have you been treated for the coinfections? if not, I suggest you discuss with your llmd.
Posted 3/12/2019 5:06 PM (GMT 0)
HeartsinPain -- thank you for your reply and suggestion. I have not tried LDN but will mention it the next time I speak to my practitioner.

Girlie -- Thank you, as always, for your reply. I'm actually unclear as to whether my LLMD practice is specifically treating the coinfections. My impression is that they are choosing treatments that they think might attack both, but I'm not sure.

When I was on Plaquenil and Biaxin, they mentioned a report showing that a similar (but not identical) protocol had been effective for bartonella. And the LLMD has mentioned that he believes bartonella is actually a big cause of the kinds of joint issues I have. So I do think they have it in mind -- but I'm just not sure that my treatment specifically targets it.

I'm seeing a nurse practitioner in this practice because the doctor doesn't accept new patients. However, I've spoken by phone with the doctor (who seems extremely knowledgeable) a couple of times. I asked him about rifampin, because I had read that that's often prescribed for bartonella. He said that he would go to rifampin if I didn't show improvement from other treatments, but that he liked to try things with "better side effect profiles" first because they can often be effective. He made it sound like rifampin can be pretty risky and unpleasant.

Thank you, and I hope you're doing well.
Posted 3/12/2019 5:12 PM (GMT 0)
For bart you many (most?) need Rifampin....or the stronger Rifabutin....

There are the fluoroquinolones - but not all of us will take those - due to the damage (sometimes permanent) they can do.

I would have a discussion with your LLMD.

For Babesia...you may need the atovaquone.
Posted 3/12/2019 9:14 PM (GMT 0)
you might try the HA thing I am doing here

https://www.healingwell.com/community/default.aspx?f=30&m=4112412

hyaluronic acid is the main lubrication for the joints and lyme destroys it.
Posted 3/12/2019 10:03 PM (GMT 0)
I will ask again about doing rifampin. They seem reluctant to do it without trying other things first.

Lapis_29, thank you for the suggestion about hyaluronic acid. That definitely sounds worth a shot. Can I ask what kind of joint pain you've been dealing with? E.g., large joints (like knees) or small joints (like hands, feet)? This is just for my own curiosity ... I always am interested in whether other people have the same kind of joint pain I have, because rheumatologists always say that pain in multiple small joints isn't typical of Lyme.
Posted 3/12/2019 10:17 PM (GMT 0)
pain in multiple small joints is ABSOLUTELY typical of Lyme.

So many docs have not a freaking clue how lyme presents, its amazing.

I have pain in my knees, shoulders and wrists and neck
Posted 3/12/2019 11:13 PM (GMT 0)

Lapis_29 said...
pain in multiple small joints is ABSOLUTELY typical of Lyme.

So many docs have not a freaking clue how lyme presents, its amazing.

I have pain in my knees, shoulders and wrists and neck

Agree - joint pain is CLASSIC lyme
Posted 3/12/2019 11:17 PM (GMT 0)

LilyPanda said...
I will ask again about doing rifampin. They seem reluctant to do it without trying other things first.

Lapis_29, thank you for the suggestion about hyaluronic acid. That definitely sounds worth a shot. Can I ask what kind of joint pain you've been dealing with? E.g., large joints (like knees) or small joints (like hands, feet)? This is just for my own curiosity ... I always am interested in whether other people have the same kind of joint pain I have, because rheumatologists always say that pain in multiple small joints isn't typical of Lyme.

Rifampin is not that harsh - not sure why they see it as a last resort
If so - then try the others’ in a timely manner and then move on to the Rifampin/Rifabutin .
Nothing good will result with the docs “dawdling “

My joint pain: fingers, wrists, knees, shoulders, elbows

My fingers were really bad for awhile.
I would wake up in the night with my hands clenched tight and would pry my fingers apart - so stiff and sore.
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