Can Lyme/Bartonella cause this kind of all-over pain (in multiple joints, etc.)?

Several weeks ago, after a few really good months, I started feeling pain in many different parts of my body -- wrists, fingers, ankles, toes -- as well as a weird loose feeling in one knee, as if it were going to pop out of place. (I had felt similar symptoms several months before, in a much more mild form, but they had disappeared for months.)

At the time, my doctor thought it might be candida-related, and she gave me a short 3-day course of Diflucan. Since then, it has improved at times but has never really gone away.

The finger pain worries me the most, because I know that finger pain can be a classic sign of rheumatoid arthritis. Further, a lot of sources state that Lyme arthritis tends to be limited to one or two joints -- and that, where there is pain in multiple joints, something like rheumatoid arthritis is more likely.

So my question is -- can Lyme/Bartonella cause this kind of issue, with pain/aches/discomfort in so many parts of the body? Or is this more likely something else, suggesting that I need to go back to the rheumatologist?

(By way of background: last year, long before anyone suspected Lyme, I was sent to a rheumatologist because I had symptoms that can suggest autoimmune issues. At the time, my only symptoms were dry eyes and dry mouth -- no joint pain, minimal fatigue. I was tested for Sjogren Syndrome and many other autoimmune issues. None of these tests came up positive, but I do have a consistently slightly positive ANA. So the fear of a possible autoimmune disorder is always in the back of my mind.)

The doctor I'm seeing for Lyme treatment doesn't think it's rheumatoid arthritis, because I have no joint swelling. (But I wonder if maybe that's just because it's early, and the swelling will come later?) And, honestly, I'm not even sure the pain I'm feeling is joint pain -- it sometimes feels more like it's in the muscles or nerves or bones. But the fact that the pain/discomfort seems to hit so many parts of my body worries me.

of course it can. lyme was first found in the town of lyme where dozens of kids had juvenile arthritis. WEIRD!! many kids from many families unrelated to each other.....turn out all were bitten by ticks.....

So I glad I could be of any help! I'm doing so much better, but it has been a heck of a long journey and quite grinding tbh with you. It took me a long time to get proper dx, and my particular infections have been quite entrenched and tough to root out, this likely has to do with length of illness, severity of illness, plus likely my immune system genetics play a role. The other angle that has made it tricky is my sensitivity with the herxheimer issues (effective meds tend to make me flare and if I'm not careful it can get out of control).

I have gone thru quite a few abx and herbal combos, many have helped a lot, I am a fan of both treatment modalities (and intrigued by others). One important thing (imo) is for the patient to research, see what therapies make sense to them, what approaches interest them and try to examine the potential benefit/risk of any therapeutics. In regards to herbals, I like zhang, buhner, cowden herbal protocols, along with some of the woodlands essence herbal combos, I mixed and matched a lot of those. In terms of abx various things have helped push me along, alinia, azithromycin, malarone, doxy, biaxin, bactrim, ceftin, even some antiparasitics like ivermectin and albendazole were effective, etc etc you get the drift. I've run the gamut! I do believe that when we plateau on one therapeutic combo it is important to improvise and rotate treatments. I think the best docs treating these diseases understand the importance of this strategy, the timeframes of cycle rotations really depends on the patient and their particular case and how symptoms might or might not be resolving. Some patients are able to resolve their infections more easily than others and it can be more straightforward, others can be much more of a puzzle that needs to be figured out often requiring quite a bit of trial and error.

But I still have some residual symptoms (not as strong as before) and am currently just switching from Dr H's dapsone protocol over to the pyrazinamide protocol (this is an old TB drug), so this is a bit more of what you could call new territory sort of treatments and you need a doctor who knows how to manage this stuff. I tend to think it is good to first exhaust the more conventional approaches and then if most things have been exhausted looking into some of this other stuff. I would have rather avoided these dapsone/pyrazinamide therapies but given the stickiness of my infections and how much they've affected my life I have the stomach for the approach (and the risks it can entail). So far these treatments seem very effective for my case, I sense I'm in the close-out stages, but we shall see! I have to say that I've gotten the most improvements with Dr H so I've been quite happy with that. Sometimes it takes finding the right doctor, one we feel comfortable with, one who listens to us, one who we can partner with! Unfortunately access and finances are often a barrier though which is horrendous for the patient community.

I have not taken a quinolone yet as this was a drug class that I was a bit worried about in terms of side effects. But given potential effectiveness for bartonella, and as time has gone on growing suspicion this is likely my main infection, and the fact that doc thinks it could really help me I may cycle onto it for a brief window. Two things to do if on that med to help hedge against some of the side effects according to doc are take a lot of magnesium supplements and vit c supplement.

Btw I remember reading about one of those original cases from Lyme, MA. The kid became an emergency doc, and in the article he mentioned he still had some weird ongoing symptoms (but he was high-functioning as I understood it, as you probably would need to be to be able to practice ER medicine!). He didn't seem to think he had an ongoing infection, I on the other hand wouldn't be surprised if there was still pathogen that hadn't been wiped out in the initial abx treatment course causing continuing symptoms.

I think it is great that you are researching, trying to learn more, questioning. I'm glad you are pursuing this angle (lyme/coinfections) but it is also good that you are reading beyond it. It is always good to rule out other things and not put the blinders on one way or the other. Obviously I have my views (bias) on the suspected importance and potential role of these infections in various autoimmune conditions but that doesn't mean one should ignore other possibilities and avenues.

In case you haven't come across his work yet Ed Breitschwerdt is a great authority on bartonella, he has also given some excellent lectures that are worth a listen if you have time but here is a link to an article: /wwwnc.cdc.gov/eid/article/15/12/ad-1512_article

I also think there are several great books out there that can be good resources. Stephen Buhner's Healing Lyme and Dr Horowitz's book as well, he has a 16 point model that looks at the infections but also at various other points that should be examined: /www.amazon.com/How-Can-Get-Better-Resistant/dp/1250070546/ref=pd_sim_14_1?_encoding=UTF8&pd_rd_i=1250070546&pd_rd_r=BY9ZHHFCAV9TF6G9Z7QV&pd_rd_w=6T0VR&pd_rd_wg=FGaza&psc=1&refRid=BY9ZHHFCAV9TF6G9Z7QV

Pamela Weintraub's Cure Unknown is another great resource, a sort of epidemiological history of lyme. Very well-written based on solid journalistic research.

Shoot, I forgot to mention a few other things that really helped. Diet has been huge for me. I eat a plant-based diet, but the most important I think is eating "real" foods (avoiding processed) and cutting out refined sugars from the diet. I also minimize dairy and gluten but am not as maniacal on that as I am with the refined sugars. I think patients should see what works for them in terms of diet, one thing that works for one person might not work for another. I also have taken various supplements, some of the most helpful were LDN (low dose naltrexone), magnesium malate, and employing various detox strategies as well to help control symptoms and herxheimers.

Post Edited (sebreg) : 8/9/2017 2:34:46 PM (GMT-6)

"Further, a lot of sources state that Lyme arthritis tends to be limited to one or two joints -- and that, where there is pain in multiple joints, something like rheumatoid arthritis is more likely."

No - I'd say there are more people with Lyme who have joint pain in multiple joints rather than just one or two joints.

i'm one of them. I have/had pain in my knees, fingers, wrists, elbows, shoulders.

there is a great deal of overlap with symptoms for all of these infections in the lyme and co group - but many respected LLMD's have stated that they see a pattern of increased overall pain syndrome when bartonella is in the picture

This is an old post here from 2017, but an obvious worthwhile topic.

"Pain" or even "joint pain" and "all over pain" is a pretty vague but common description. Where we feel pain and where it originates from are often not the same place. What these infections do to the soft body tissue is certainly not limited in nature or location.

I had some actual joint pain and swelling at one phase, which was different than the overall aches and stiffness later on. Myofacial and or trigger point pain is something I've brought up many times throughout the years, because its a real thing. This can shorten muscle, leading to compression in joints. Long term this can create a new normal in which removing the initial cuase does not always correct. Aggressive trigger point release (several forms of it) is what some people need even after the infection is stopped.

In layman's terms its like this: leave a vehicle tire siting flat with weight on it for years and it will no longer air up properly round again. Its taken new memory. The bodies fascia netting which runs thru muscle is no different sometimes - but can be manually corrected to a certain point.

https://jhu.pure.elsevier.com/en/publications/differential-diagnosis-of-trigger-points

"Systemic medical disorders that cause TrP-related pain include connective tissue disorders [hypermobility syndrome and polymyalgia rheumatica], hypothyroidism, vitamin B12 insufficiency, and infectious diseases [Lyme disease and parasitic infection]."

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I seem to be getting into healing the last layers of tight fascia, I just treated some remaining trigger points this weekend with some success with some new methods of release for specific areas. Ive not done this much for several months up to this weekend.

Its amazing how much stronger specific muscle strength is when trigger points are released and new blood flow begins the healing of small tissue areas. This requires major self body detective work, its not easy.