Just got my test results back from IGeneX testing double positive for Lyme disease. My LLMD has me on Doxy - actually, I've been on it for a month due to his suspicions 200 mg a day to start. Also added Omnief 300 mg, Flagyl 250 mg, A-L complex and a probiotic.
I have the arthritic complications of Lyme, but am so grateful I don't have the fatigue or mind clouding, being as I live alone and need to work.
I don't question his prescriptions or dosages. I'd sure like to know how much longer I need to endure this constant pain before seeing some relief. Dr. said 6 months to a year. He also said I'd feel worse before I began to feel better. He was right on feeling worse. :-) Just looking for some positive straws to grasp at today.
Am feeling the gratitude for finding this list. Also a support group in my area.
Hi, we are glad you found us. I am still pretty ill so others will write more but wanted to give you a reply.
It is hard to say how long it will last. Did your LLMD take co-infections tests at igeneX ? If you have one or more co-infections like I have, it can complicate matters.
I gradually went up to 400 MG of Doxy and 750 of Flagyl but your doc needs to determine that. You will feel worse before feeling better from herxheimer reactions. When the medications are working many people "herx" from it.
Have you read Burascano's treatment guidelines? They are on ILADS dot org and goes into explanations on herxing and other good things.
Welcome! And congratulations on a diagnosis -- it's the first step toward being well again.
My Lyme symptoms were mostly brain fog and fatigue, not so much aches and pains, so someone else can answer with better background on that point -- but there's a reason for painkillers, whether it's Tylenol or something stronger. Pain impairs the immune system and thus healing (never mind the suffering), so I hope your doc didn't just shrug off the pain as 'too bad.'
Others here can speak specifically to their pain treatments of various kinds, not all of which are medication. Sauna may help? See what others have to say here, and don't despair. I don't doubt that there is something that makes good sense that will help you.
Mojo asks an important question: were you tested for co-infections that the Lyme ticks carry ~half the time? Those are entirely separate infections from Lyme and are sometimes are treated before beginning Lyme treatment, depending on all the facts and circumstances. I was treated for a co-infection and then for Lyme, while others here went the other way around, at least partly because the co-infections weren't confirmed until Lyme treatment was underway.
In my untrained opinion, there is no reason to endure untreated pain. Did your doc say WHY the pain just has to be endured rather than treated? Would be interested to hear!
Glad you've joined us here, it's a good group, stop by whenever you like! J.
Thank you both for your warm welcome. Guess I just want to get better tomorrow , after being in pain for 2 years now. I did test positive for Pneumoniae IgG and IgA, which had been dormant for 30 years after being diagnosed with walking pneumonia. Who knew?
I do take as little Ibuprofen as possible - usually 400 mg first thing in the morning when it is hard for me to move. I've taken more Ibuprofen in the last 2 years than I did the first 61 years of my life.
My doctor and I feel that this condition manifested after being misdiagnosed for RA and put on methatraxate which is an immune suppressant. Frankly, I've always avoided doctors because I feel most of them do more harm than good. This was definitely the case when I was diagnosed for RA. Turns out it was gout, and was treated by my LLMD but not before the Lyme arthritis began. Had I not been put on the immune suppressant, I probably would be just fine today. And a few thousand dollars richer.
I would sure like to hear that someone else has gone through this and is fine now. I remain optimistic!
I heard from my doctor's PA that there are some patients out there like you who just have joint and muscle issues. (Having Lyme wthout fatigue seems uncommon to me.)
Lyme seems to get everyone one way or another. I haven't had any muscle or joint pain at all, just debilitating gut and neuro issues, not to mention my chronic breathing issues with Babesia. I can't imagine the arthritis pain, though. It must be difficult to live with. I am so glad you are getting treatment from a LLMD.
I have been in treatment for 14 months and I am enormously improved, in spite of my recent setbacks in treating Babesia. I really don't have much Lyme left. Yes, it does get better, just slower than you'd like. And sometimes it is two steps forward, one step back. When I would start a new antibiotic for Lyme (and Babesia), I always had a herx reaction which was either increased rib pain (a big symptom for me) or headache/fatigue/brain fog.
Detoxing does help. You'll just need to find what works well for you. My favorites were chlorella, Epsom salt baths, and Alka seltzer Gold (it has magnesium)
Ricobord brings up something I overlooked: magnesium supplements.
Lyme bacteria use up magnesium (Mg) in the whole body, and Mg is needed for the muscle to operate smoothly, among other things. When Mg levels are too low, muscle cramps can easily result.
Epsom salts (which you can get at any drugstore, no prescription) are just ground up Mg, and not only is a nice warm bath soothing to aching muscles, but the Mg is also absorbed through the skin into your bloodstream.
I take Mg supplements (capsules) instead of Epsom salt baths, and have read that any kind of Mg that ends in "-ate" is most easily absorbed by the body: Mg malate, orotate, aspartate, citrate, etc. My favorites are either Mg malate, or a brand labeled "Magnesium CAO", which is short for citrate, aspartate, orotate (a blend of these three kinds).
I have read in several places that the commonly available 'CalMag' brand/formulation is not as effective, because the ingredients in that particular supplement are not as easily absorbed in the body.
Thank you all for your kind and encouraging responses. There is literally no way I could get in and out of a bathtub at this point, so I will look into the Magnesium supplements, and thanks to this list, I know which ones to look for.
For some reason, the rest of this post keeps getting deleted (my typing isn't the best right now), so I just figure it isn't all that important :-) I hope that random snippits don't show up when I hit Post.
PS -- I've been told by wise friends here and elsewhere to look for supplements that are in capsule form (with powdered ingredients inside capsule form) rather than in hard, condensed solid pill form, because the hard pills sometimes don't dissolve properly in the body and thus don't give the full dose.
There are good vitamin shops in many places these days, even some that aren't too pricey, and when I am planning ahead, I get mine by mail order or online, because the prices can be quite good esp. on the larger quantities when you're sure of what brand/formulation/dose you want. I'll send you a separate 'private message' with the name of the company I use -- I don't work for them or have any affiliation, I just take their vits and supplements!
If you're not familiar with the 'private message' (PM) function here, look in the upper right corner of this page and you'll see in black type
Inbox / Logout / My Shortcuts
If there is a message waiting for you, there will be a number next to 'Inbox' like 'Inbox (1)'. Click on 'inbox' and it will open right up to your messages, no passwords or anything needed..
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