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Posted 1/4/2018 12:06 PM (GMT -5)
This is sort of a follow-up to another question that I posted. My rheumatologist (who is well-meaning but dismissive of the possibility of Lyme as a possible cause of my symptoms) tells me that Lyme does not cause joint pain in multiple small joints (such as fingers). Rather, she says the hallmark of Lyme is that it affects one or two large joints, such as the knee.

When I told my rheumatologist that I'd seen occasional anecdotes online about people with Lyme having finger pain, she said she would bet that these are people who actually have undiagnosed rheumatoid arthritis or another autoimmune disorder.

So my question is: if you've had joint pain in your hands or feet, did it improve with Lyme treatment? It would make me feel so much better to know that other people had this issue and that it was, indeed, improved by proper Lyme treatment.

(By way of background: aside from dry eyes/mouth, my most bothersome symptom is pain in my fingers. There's also some discomfort in my toes, wrists, and ankles. It started about a year ago and was very sporadic -- it never lasted long and was never that bad. The last time the finger pain started, however, it didn't go away. It's been about a month now, and seems to be getting slowly worse.

There was also no swelling, until just yesterday. There is now a slight but noticeable swelling of certain finger joints. )
Posted 1/4/2018 12:34 PM (GMT -5)
I did answer your other post.

Yes, I did have finger joint pain and stiffness - no swelling.
It always came on in the middle of the night - it lasted for a couple months.
It came on after I started Lyme and co treatment.
I think in particular it was part way thru Bart treatment.
Posted 1/4/2018 1:22 PM (GMT -5)
LilyPanda, I had the finger pain and would wake up in the night with it and first thing in the morning it was often there on one or more fingers. Not had that for about two years but it has recently returned, I am hoping this is temporary !! I have improved so much over the past 18 months I had almost forgotten this symptom !!
Posted 1/4/2018 2:38 PM (GMT -5)
Before I found a treatment that really worked, all the finger joints on my right hand were painful, swollen and stiff off and on. I had trouble holding a pen. I still have pain in my wrists and ankles once in a while. It was definitely not regular arthritis. Also, I get pain in the tips of my fingers.
Posted 1/4/2018 2:45 PM (GMT -5)
1000Daisies -- thank you so much for your posts. I'm glad to hear that you are doing well (that the hand pain didn't last), and so happy to hear that your son is doing so well. It's bad enough to go through health problems yourself -- to watch your child go through them must be unbearable. (My daughter had a bad head injury years ago. She eventually recovered completely, but it took more than a year, and that year was the most stressful of my life.)

I hope so much that my daughter never has to deal with this. We live in NYC and she isn't in the country much, so theoretically her risk of getting a tick-born illness is low. But I'd have said the same for me, and somehow I managed to get infected anyway.

Girlie -- thank you for your replies (to this post and my earlier one). Your replies are always helpful and thoughtful. (In fact, as I read through the replies to my earlier post, I was really struck by how very informed, thoughtful, and intelligent they all are. It's very moving and impressive to me, how people have worked so hard to educate themselves on these extremely complex issues and then take the time to share their advice and experience with others.)

Suzee -- I hope that the return of your finger pain is temporary too. I'm happy to hear you've improved so much, and I can't wait to be able to say the same thing.
Posted 1/4/2018 4:04 PM (GMT -5)
You will get so many of those things with Lyme, Lily. One accupuncturist told me to eat a LOT of ginger and garlic with every meal. Bingo, worked like magic, especially if you are taking tumeric pills and like to add pepper to your food as well. I still throw in an Aleve pill now and then if I go to a movie and want to be able to stand up afterward, but the ginger, garlic and tumeric/pepper trick works for most things.

It really bothers me when doctors believe that if you have Lyme it will show up in the knees in particular. I had no knee symptoms when mine first started -- only spinal, but within weeks it had devastated my knees very badly as well as most other joints. What makes me especially angry is that Lyme isn't picky about where it wants to go. It will go anywhere in your body and then doctors say if it isn't in your knees it's some other auto immune disease.

That's all most Lyme patients are told. If this is another auto immune disease, it's far worse than Lyme so what I find most interesting then, is why no one seems to be wanting to find out what this horrid auto immune disease is!! I have to ask myself over and over again why no one would give a darn about getting to the bottom of it. I think they all know it's Lyme but because Lyme was spread not just by ticks but by biowarfare experiements, they try to keep this disease under cover as much as possible.

Post Edited (Cystem) : 1/4/2018 2:14:37 PM (GMT-7)

Posted 1/4/2018 4:15 PM (GMT -5)
As I mentioned in my reply to your other post, I have the same type joint symptoms that you described. Bartonella treatment helped and that subsided greatly for weeks after being constant for almost 2 years. At the moment those symptoms are flaring again but not as severely as they initially were. I have other issues going on right now that are likely causing the flare I'm in.

Bartonella treatment should improve and eventually eliminate those specific joint symptoms and also the dry eyes and mouth.

Specifically, I have been treating bartonella with Stephen Buhner's full herbal protocol. My joint symptoms improved after I began using the IHA formula followed by sida acuta. I felt like the IHA helped me the most, and the sida acuta caused temporary worsening of symptoms.

Post Edited (WalkingbyFaith) : 1/4/2018 2:20:01 PM (GMT-7)

Posted 1/4/2018 6:17 PM (GMT -5)
Yes, when I'm having a bit of a flare I get joint pain my right big toe. It's always the right big toe for some reason.

It's very random. And I know it's lyme because the big toe joint pain comes and goes throughout the day versus it being constant like "real" arthritis.

It will hurt for 10 mins go away for a few hours and then hurt again for another 10, 20 mins.

And then a day or two later gone. Then several months later, just randomly one day it's back.

A lot of my lingering 10% non-healed part of lyme will act this way.
Posted 1/4/2018 9:00 PM (GMT -5)

Cystem said...
You will get so many of those things with Lyme, Lily. One accupuncturist told me to eat a LOT of ginger and garlic with every meal. Bingo, worked like magic, especially if you are taking tumeric pills and like to add pepper to your food as well. I still throw in an Aleve pill now and then if I go to a movie and want to be able to stand up afterward, but the ginger, garlic and tumeric/pepper trick works for most things.

It really bothers me when doctors believe that if you have Lyme it will show up in the knees in particular. I had no knee symptoms when mine first started -- only spinal, but within weeks it had devastated my knees very badly as well as most other joints. What makes me especially angry is that Lyme isn't picky about where it wants to go. It will go anywhere in your body and then doctors say if it isn't in your knees it's some other auto immune disease.

That's all most Lyme patients are told. If this is another auto immune disease, it's far worse than Lyme so what I find most interesting then, is why no one seems to be wanting to find out what this horrid auto immune disease is!! I have to ask myself over and over again why no one would give a darn about getting to the bottom of it. I think they all know it's Lyme but because Lyme was spread not just by ticks but by biowarfare experiements, they try to keep this disease under cover as much as possible.

There are options for you to treat....
Posted 1/4/2018 10:44 PM (GMT -5)
Your rheumatologist is wrong, as was mine. They aren't trained in treating tick-borne diseases and, to be frank, will ruin your life with a misdiagnosis. Treat it as an infectious disease first, then consider autoimmunity if that treatment fails.
Posted 1/5/2018 3:55 AM (GMT -5)

LilyPanda said...
This is sort of a follow-up to another question that I posted. My rheumatologist (who is well-meaning but dismissive of the possibility of Lyme as a possible cause of my symptoms) tells me that Lyme does not cause joint pain in multiple small joints (such as fingers). Rather, she says the hallmark of Lyme is that it affects one or two large joints, such as the knee.

When I told my rheumatologist that I'd seen occasional anecdotes online about people with Lyme having finger pain, she said she would bet that these are people who actually have undiagnosed rheumatoid arthritis or another autoimmune disorder.

So my question is: if you've had joint pain in your hands or feet, did it improve with Lyme treatment? It would make me feel so much better to know that other people had this issue and that it was, indeed, improved by proper Lyme treatment.

(By way of background: aside from dry eyes/mouth, my most bothersome symptom is pain in my fingers. There's also some discomfort in my toes, wrists, and ankles. It started about a year ago and was very sporadic -- it never lasted long and was never that bad. The last time the finger pain started, however, it didn't go away. It's been about a month now, and seems to be getting slowly worse.

There was also no swelling, until just yesterday. There is now a slight but noticeable swelling of certain finger joints. )

I think what your rheumy is thinking of is the "original" cases of Lyme in Lyme, CT were noted for causing knee swelling. I have heard of people saying that they noticed a swollen knee, but in almost all these cases it was an acute reaction, i.e. it was something that showed up almost immediately after they were bitten.

Like I said in the other thread, I have finger/arm/foot/leg joint pain without swelling. And I was thoroughly screened for RA and it all came up negative.

I never got a swollen knee. And my EM was unmistakable.

Your rheumy is mistaken.

As for whether the joint pain will go away with Lyme treatment - I sure hope so. I seem to be having some luck with Cat's Claw and teasel. But I'm only a few months into taking those.
Posted 1/5/2018 11:27 AM (GMT -5)
Absolutely. Small joint pain isn't a persistent symptom for me but the frequency has definitely decreased. I mostly take knotweed which is antibacterial. I sometimes get small joint pain flares presumably as a result of die off which is pretty immediate after starting a new dosage regimen. Then as I adjust, it disappears and becomes less frequent than before. I'm under no illusions that it's gone because increasing the dose brings more flares out again and occasionally I'll get a flare without adjusting my protocol. But it's very very rare these days. Not like it was before treating. Now since I use herbal meds and not antibiotics it's impossible for me to prove that the improvements are not based on anti inflammatory actions. But my reactions to the herbs indicate a die-off/remission cycle more so than pure symptom suppression
Posted 1/5/2018 1:40 PM (GMT -5)
I haven't read all the posts in this thread, but count me in as another one that has had small joint pain/swelling/redness with Lyme. The thinking that it only affects the larger joints (like knees) is "old school" thinking that should have been discarded.

I have had the testing to rule out RA and Osteo arthritis. I had zero markers in my blood for either of these, and I was in the heat of Lyme at the time.

Mine can be persistent for several months, or only pop up for a day or a few days. Sometimes it seems to have something to do with the weather, and other times it's completely random.

I had a break from it when I healed the first time (2 FULL years of none of this pain!!!!), but, unfortunately, with my reinfection, it was one of the symptoms that returned.
Posted 1/5/2018 8:12 PM (GMT -5)

Traveler said...

Mine can be persistent for several months, or only pop up for a day or a few days. Sometimes it seems to have something to do with the weather, and other times it's completely random.

I can totally relate to this. A day or two and it's completely random. That's how you know it's lyme.
Posted 1/8/2018 9:16 AM (GMT -5)
The current spell of finger joint pain that I have now has persisted for several weeks. (In the past, it would be sporadic and never lasted long.) I also, for the first time, have noticeable joint swelling.

It's becoming increasingly uncomfortable. Brushing my daughter's hair is starting to be difficult. Also, some nights or mornings (such as right now), my whole body aches.

Would it be crazy to see the rheumatologist for this? I am scared because I know that damage to the joints can happen pretty quickly. On the other hand, I know that she'll likely suggest I start prednisone, and I know that steroids are a bad idea if there's any kind of infection process. (She does not believe that I have Lyme.)
Posted 1/8/2018 9:22 AM (GMT -5)
Notimefolyme -- you said that you had finger pain and swelling at some point, but it sounds like it improved with treatment? Did the joint swelling go away? I'm in a little bit of a panic right now, having spent too much time on Google and becoming convinced that my hands will become deformed if I don't see a rheumatologist immediately.
Posted 1/8/2018 3:21 PM (GMT -5)

LilyPanda said...
The current spell of finger joint pain that I have now has persisted for several weeks. (In the past, it would be sporadic and never lasted long.) I also, for the first time, have noticeable joint swelling.

It's becoming increasingly uncomfortable. Brushing my daughter's hair is starting to be difficult. Also, some nights or mornings (such as right now), my whole body aches.

Would it be crazy to see the rheumatologist for this? I am scared because I know that damage to the joints can happen pretty quickly. On the other hand, I know that she'll likely suggest I start prednisone, and I know that steroids are a bad idea if there's any kind of infection process. (She does not believe that I have Lyme.)

You're right - prednisone would most likely be the treatment she recommends...but as you mentioned that's not a good idea when you've got lyme. And the prednisone would most likely be a higher dose (it's alright to take very low doses of cortisone that is sometimes prescribe for adrenal fatigue).


I don't think I have suffered any damage to my joints. And, my fingers were quite bad. I'd wake up in the night...and my fingers would be clenched and really sore - worse on my right hand. I'd have to pry them apart with my left hand.
Posted 1/8/2018 3:22 PM (GMT -5)
Lily - have you discussed this with your LLMD?
Posted 1/8/2018 4:03 PM (GMT -5)
Girlie, thank you for the reassuring words about your experiences -- that your joints don't seem to have been damaged. I'm sorry if you've said this already, but did you have the joint swelling too when you were going through the finger pain?

I haven't been able to get in to see the LLMD since the finger pain got worse (and the swelling started). She did leave me a message, in response to one I left for her, saying that (i) it wouldn't hurt to see my rheumatologist, and (ii) she will discuss my rheumatologist's recommendations with me after that.

I'm not that happy with this LLMD. Although she is an ILADS member, I don't think Lyme is really her area of expertise, and some of her recommendations have seemed odd to me. (She's a really good doctor -- board-certified in cardiology and internal medicine -- but I think she's best as a functional medicine practitioner focusing on diet, etc.)

I do have an appointment in April with someone in Connecticut, and I'm on a waiting list in case any cancellations come up.
Posted 1/8/2018 4:07 PM (GMT -5)
No, I did not have the swelling. Not in any of my sore joints, actually.


So, that may make a difference...does anything help to relieve the swelling?

Do you ever put cold packs on it? ice? Make sure if you use ice that you limit the time.

It won't hurt to see a Rheumatologist...maybe they have an idea of how to help with swelling - even if you don't want to take the steroids. ( I wouldn't take the steroids)

You've tried things like Curcumin, Boswelia and EFA's...and any other 'natural' anti-inflammatories?
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