Thank you all so much for these very helpful responses. Lightlife , I think you've responded to some of my posts in the past, and your replies always give me a lot of comfort. I really appreciate...
You are articulating, perfectly, exactly the same thought process that I've spent months going through (including wondering whether boosting my immune system would actually be harmful if I'm having...
I’ve been struggling with that question for a couple of years now (as a lot of my prior posts reflect), and I genuinely don’t know. My rheumatologist believes that Lyme is one of many illnesses that...
Hello – I was wondering if anyone here had ever developed puffy or swollen fingers from Lyme or co-infections? I don’t mean swelling of just the joints themselves, but rather the whole finger...
I'd heard about the orange pee, but I hadn't heard that it can stain your teeth. Yikes! I know I'm being silly and vain, but I'm not sure I can take orange teeth on top of everything else that's...
I feel like all my posts these days are "what was your experience with ___" or "does anyone else experience ___," so I apologize that this is another one .... But it sounds like my LLMD practice is...
Thanks for the suggestion, Walkingbyfaith. I don’t take those, but I just dug through the herbs I bought last year when I wanted to try the Buchner, and I have both. So I will start taking them....
Girlie, it’s kind of hard to say. Based on the imaging I’ve had done on my hands, it seems there’s both inflammatory (autoimmune) arthritis and also some osteoarthritis (apparently caused by the...
Updating ... I just spoke to the LLMD, and he says that (contrary to what my rheumatologist said) sulfasalazine is a known immunosuppressant. He said he would not recommend it. I feel like I'm back...
My joint pain has gotten worse in the past several months, and -- because I was nervous about the possibility of permanent joint damage in my hands or feet -- I saw my rheumatologist. She is aware...
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...
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...
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...
Wow, thank you for all these responses and useful advice. Sebreg -- That makes sense; thank you. The nurse practitioner (she works in an LLMD office in Wilton, CT) said that she's seen artemisinin...
I just finished a month on Biaxin (clarithromycin) along with Plaquenil (which I was already on), and haven't really noticed a difference in my symptoms either way. The LLMD practice asked if I...
Sebreg and goshawk -- thank you for your replies and advice! I haven't done any detox measures recently, mostly because I never seemed to have any herx-type reactions before. I did do things like...
I recently started Biaxin (clarithromycin), to go with Plaquenil (which I was already on). The first few days of Biaxin were pretty uneventful -- I did get the metallic taste in my mouth, and it did...
I did have an EKG done before starting the clarithromycin. The LLMD said that my QT intervals (I think?) were great for purposes of this antibiotic and that she wouldn't expect me to have issues. I...
I'm just starting Biaxin (clarithromycin) today, and I was wondering about others' experiences on it. In particular, I was wondering about any side effects I should be aware of? The LLMD said that...
Psilociraptor, Thank you for this. Although I have read a lot recently about different theories of autoimmunity (mostly focusing on leaky gut), I did not have much of an understanding at all of how...
Is it weird to have never had a noticeable herx with any Lyme treatment? I started with herbal treatment last year (MC-BB-1), eventually moved to doxycycline for a few months, and then did a few...
Girlie, I am treating Lyme now. This winter I was doing doxycycline with my primary care doctor while I was waiting for my appointment with a good LLMD. I was also doing some Buhner herbs for...
WalkingbyFaith -- that's really interesting about bartonella and the vascular system. I was doing the Buhner protocol for a while several months ago (though not very faithfully). I remember his book...
Thanks for all the replies. It's so interesting and confusing. I too, have so far tested negative for the specific autoimmune markers that they've checked for (rheumatoid arthritis, Sjogren's...
I apologize for posting so many questions in the past several days .... I've posted before about how I sometimes worry that Lyme and coinfections are a red herring for me, and that maybe I'm one of...
Healing98, Thank you so much for your reply. It gives me hope whenever I read about people who had symptoms like mine and improved with treatment. Some days, like today, I get so discouraged and...
Because my rheumatologic-type symptoms (joint pain, joints swelling, fingers swelling) have gotten worse in the past month, my LLMD wants to switch me to Plaquenil and Biaxin. I had previously been...
Hi mcspike, That is a good point. I've seen information suggesting that sometimes autoimmune disorders can be caused or triggered by Lyme. I've read about anecdotal evidence suggesting that treating...
Hi goshawk, Thank you so much for the kind response. Unfortunately, I'm told by my rheumatologist that it's hard to rule out certain autoimmune disorders (such as Sjogren's or rheumatoid arthritis)...
I haven't posted in a while ... I have been undergoing treatment with a different LLMD practice and hoping to see some progress. One thing that has concerned me recently is that, in the past month or...
magoo2, I'm sorry -- I think your reply must have posted while I was writing my last response and I didn't see it in time. Yes, I think my rheumatologist means prednisone. I've seen pretty strong...
Girlie, I live in New York City. I would be grateful for any recommendations you have. I stopped seeing my previous LLMD because she didn't seem to have enough expertise on Lyme (though she was...
Hi Chander. Last month I posted here asking for feedback on Dr. G, and I received some helpful feedback. In case you haven't already seen that thread, here is the link:...
I have seen many warnings, here and elsewhere, against taking any steroids if you have tick-borne illnesses. I am wondering if any of you have gotten to the point where you had to decide whether to...
I was given a prescription for Meloxicam and have so far tried it only once. (I've been having joint pain/swelling and general allover pain/discomfort recently, and my rheumatologist prescribed it. I...
Lightlife -- I'm sorry, I have another question. Back when you saw the rheumatologist, do you recall if you had blood tests done? I've so far been negative for any specific autoimmune markers (for...
Lightlife, thank you again. I've been terrified the past month or two about my hands -- convinced that this is rheumatoid arthritis or something similar. I didn't know anyone else who'd had these...
B99 , thank you for this suggestion. I think I have read elsewhere about people using apple cider vinegar for arthritis pain, but it didn't really register with me at the time. I will try this. It...
Traveler , I'm sorry for the delay in responding -- I had a couple of busy days at work and home. It's hard for me to imagine the Lyme ever caused you cognitive issues, because your posts are so...
One other random thing: As I was reading about osteoarthritis, I came across a study indicating that excessive vitamin C supplementation can worsen osteoarthritis or cause osteophytes (bone spurs) to...
In the past couple of months, I've started having joint pain in my fingers (and, to a lesser degree, my toes). Last month, I noticed that my finger joints were suddenly noticeably larger, such that I...
I will look into online courses. A couple of weeks ago, I attended a lecture that my boyfriend's father (an English professor) was giving on a poet that I love, and it was wonderful. It was like...
Please don't apologize for posting so much! I love reading your replies -- they're such an amazing combination of helpful advice, humor, and wisdom. And they are never too long. I did not realized...
Thank you so much! I will try some/all of these. During my time on this board, you've given me more useful information than even my most well-meaning doctors. If only I could send you some of the...
Traveler, could I ask what anti-inflammatory herbs or remedies you've found to be helpful with joint pain? I've added boswellia and increased the amount of omega/fish oil I was taking. I had also...
Just as a quick update to this thread: I had an ultrasound of my hands and wrists, and I was told that these bumps on my thumbs were due to early osteoarthritis. (This seems weird to me because I...
Hi Dahlias. I'm almost positive that I did not have these bumps before, but I guess that's a possibility. It would honestly make me feel better to think that they've always been there -- rather than...
Girlie, that's extremely interesting. Thank you. If correct (and it does make sense), it does explain the confusion....
Traveler, thank you so much for your post and for the link to the article. Both are very helpful. Although my ANA is consistently positive (at a low level), I've also tested negative for all the...
This is so random and specific, but I was wondering if anyone else had noticed symptoms like this. In the past month, my finger joints have started swelling -- and just this morning I noticed that I...