I have had this before. I have peripheral neuropathy all over and have continual burning pain in my right butt and now lower back. Sometimes chronic neuropathic itch on upper arms. I am currently...
I have had good luck with drug called Roxithromycin (roxid for short) but you can't get it in this country. Easy enuf to get from online pharmacies. It crosses the blood brain barrier. May be going...
I'm back! Always something new and exciting in the life of a chronic lyme sufferer. I'm still feeling great (there is hope!). Energy great, mind clear and happy, exercising. But I developed a very...
Hi everyone, I havent been here in forever! I used to be a moderator abt 10 years ago. Have chronic lyme along w my hubby. My son also has but we are all feeling well these days (knock on wood). My...
Just finished reading This is How I Save My Life by Amy Scher. It is a good read. True story of a woman with lyme disease and her adventures in trying to find a cure, learning how to deal with it...
I have been suffering from lyme now for 18 years, diagnosed 9 years ago. It is a constant battle to stay ahead of symptoms. However, I have found GREAT relief when you address your mind symptoms as...
Magnesium is crucial with lyme and will definitely cause all kinds of twitching....
I too have neuropathy from lyme and bartonella. Am currently dealing with intense nerve/neuropathy pain in my forearm, buttock and various places here and there. I am already on gralise (a time...
I have numerous neuropathies from chronic lyme. Currently dealing with terrible burning right side buttock. Tried chiro, did nothing. Dr. and chiro don't seem to think it is sciatic cause doesn't go...
My neuropathy has been probably my most lingering symptom. Started with extreme itching in upper arms and burning in forearms. I now started with burning in my buttocks and trying to figure out if...
My family is no newcomber to lyme. However, many of my extended family and friends have had tick bites in the last few weeks. Some have had the ticks tests, some just a bullseye and others took the...
Your symptoms are very similar to my symptoms over the years and with a known bite, I certainly would rule out lyme. Do you have a copy of your test results? What tests did they run? If you can post...
My llmd described it to me as a climb up a mountain - as you make progress you will fall a little bit back down each time but as long as you don't fall all the way back to the bottom, you are making...
No bedside manner AT ALL. I need to be able to communicate w my dr....
I dont think so cuz i take it regularly for years as maintenance. Wondering if it could be a change of seasons herx. But i can tell my arms and legs are still on fire! 🤪 HOPPY EASTER EVERYONE!!...
Still so puzzled. I do take cats claw everyday....
Thanx everyone. The weird thing is i feel great otherwise. Mind is super clear. Anxiety good. Energy great. Only reason i went back on the doxy was we figured it was the lyme causing the trigrminal...
Hi everyone - I’m back! Lol Just recently stopped doryx again after being put back on after trigeminal neuralgia put me in rhe Hospital. just as happened 4 years ago, my armd and legs are burning...
Hi everyone - I was a frequent visitor here and once a moderator. Both my husband and I have chronic lyme. Back when my husband was very ill (2011), my son (12 years old at the time) showed me a...
Thank you so much for your reply. Having battled so many odd symptoms from this bizarre disease, I am so hesitant to wait it out and see what happens rather than start with another dr. who doesn't...
No I can't backoff the baclofen cuz even if I forget for a few hours, I can feel it. Yes, I love my LLMD. She is the only who has me back on antibiotics since the TN hospitalization last September....
Hmmm - interesting. Thank you. I have many nerve problems. The reason I am back in treatment was I was afflicted with trigeminal neuralgia facial pain which after a hospitalization the neurologist...
Hi everyone, I haven't been here in FOREVER. I love this board and feel bad I haven't visited. I was a moderator on here some years ago. This board was literally my saving grace when I was first...
Have you tried peppermint oil ? It really works wonders on temple headaches. Hope you feel better. I had a headache every day for two years until treatment....
Please hang in ther Sam. At one point I was at the end of my rope too. That was ten years ago. I have had more joy and fun since being treated than I had my whole life. It really does get better. I...
I saw Dr. S once. I had been searching for an answer for years and was thrilled to finally be looking at a dx. I was suffering from severe anxiety and drove almost an hr to see him. As I nervously...
Been here for many many years, going undiagnosed for 9 years, 16 years into this disease at this point. Been feeling pretty well and as always trying to figure out if my latest disease is...
You have a right to ask your dr. To run Lyme western blot. If they won't, leave and go to another dr. This is the wording of a law passed in Connecticut about the inaccuracy of Lyme testing. YOUR...
No. Your next step is an LLMD. do you have the results of your Lyme tests? If not get them. Most of us have all had negative Lyme tests; however if there are significant bands of your western blot,...
Kristina - my heart breaks for you. So many of your symptoms are what my husband and I both went thru for the past ten years. You have got to get an LLMD. That the only way to get well and you will...
My heart breaks for you. But hang in there. Really. It takes a while but as long as you are in treatment you are nipping away at the bacteria in your body. I was there and yes everyday was horrible....
Many many of your symptoms sound so familiar to me and my husband. I don't know how far you are willing to travel but our Lyme dr, is phenomenal. She's kind, knowledgeable and really openminded. She...
HI Zack - my heart breaks for you. Ten years ago I could have written the exact post. It was horrible. Today I am feeling great! So don't give up. It's a hard fight but you can do it and it's so...
Get a copy of he western blot. Were there any bands positive at all? You can have a negative test and still show Lyme specific bands. It is not unusual with Lyme to see bizarre scattered symptoms....
I went thru a horrible time of depression and anxiety with Lyme and I really believe that antidepressants helped me to get well. Let's face it, we all have different predispositions to what our...
The only "good" thing about the lumbar puncture is if Lyme shows up, then they may put you on rocephin and/or a longer course of treatment. I urge u to find an LLMD. they are everywhere now....
My heart breaks for you. Here's the thing about the lumbar puncture. The test will determine if in fact you have or do not have MS". It will also tell whether or not you have Lyme bacteria in your...
Both my husband and I see dr. E very close by dr. S. She is fantastic!...
Sandra, my Lyme also started with severe anxiety and depression. I was miserable and didn't know how I was going to be able to continue. Now, my life is back in full force. Just remember you will get...
I have neuropathy issues as well for which I take neurotin. I ran out of cats claw this week and the tinnitus came back with a vengeance. If this disease doesn't drive u crazy the constant trying to...
Any chance u slee on your left side? I have found at my tinnitus is directly related to sleeping on my left side and have read how this could be due to a problem with the vagus nerve. If I sleep on...
I just read on one of the Lyme fb pages that deep tissue massage is one of the worst things if you have Lyme so I'm thinking pt might also add insult to injury. Have you tried arnica gel. I swear by...
If the brain is inflamed from infection, you can treat with an antibiotic that crosses the blood brain barrier. I'm not sure if a spect scan will show inflammation or just scarring....
You are relying on testing? I wouldn't. I would go by a bullseye. Lyme is supposed to be a clinical diagnosis. A bullseye is diagnostic BY ITSELF for Lyme. If it were my kid, I'd have him/her on...
I learned the art of deep breathing when I was strung out on Lyme anxiety. I really believe it's helped me get well and I still use it today to help me fall asleep or get thru a rough day....
Is he taking a good probiotic? Also, if u think he could be herxing, is he detoxing? It's always hard to tell what symptoms are the disease and what are being caused by the toxins. It's also hard to...
Ironically she eventually found out she does have lyme...
Cymbalta gave me my life back but I'm also on neurontin for the peripheral neipuropathy, I think I would be truly bonkers without it with the strange burning itching my body goes thru....
My heart goes out to you. The most important is to be kind and gentle to yourself. I found that once I eased up in myself that relaxation and dealing became easier. Deep breathing is a gray way to...
i feel great these days but still have the occasional tight muscles and lingering neuropathy. For me and I think for many of those with Lyme, magnesium plays a major role in tight muscles, leading to...