Serious question, this forum was so helpful. Did people migrate to Facebook or some other forum? I find it sad that this seems to be so lightly used . I'm having some weird symptoms and am looking for advice from other than my LLMD.
Posted by kgg (Member # 5867) on :
Probably FB or another platform. What weird symptoms are you having?
Posted by hiker53 (Member # 6046) on :
Mathias, a lot of us are asking the same question about where everyone went.
I haven't found Facebook helpful, myself.
Let us know your symptoms and maybe we can help.
Posted by Bartenderbonnie (Member # 49177) on :
I LOVE LymeNet’s archive threads in the ‘search function’. Always find someone who went through what I’m experiencing. It’s a wonderful resource.
YES, LymeNet is slow but so is Healing Well Lyme community. We try our best to keep it going.
There are so many other Lyme websites. I follow Dr H.. I follow Dr C.
Thanks for the replies. I've been diagnosed with Bartonella almost 20 years after my first symptoms. Never tested even unequivocal. I believe it started with eye symptoms and now it seems to be in my nervous system. Lots of pain and stiffness. Random muslce cramping. My back is killing me. I have not felt this sick in a long time. No new tick bites. Very concerned that I have a drug resistant strain of Bart. So is my LLMD.
Currently taking 300 mg/d Doxy and 1000 mg/d Biaxin. I've been on Doxy for extended periods over the past 20 years. Any experience with neuro Bart, potentially long undiagnosed, with what successful therapies?
(breaking up text for easier reading for many here)
[ 07-25-2025, 03:57 AM: Message edited by: Robin123 ]
Posted by Bartenderbonnie (Member # 49177) on :
Here’s a great website for all the strategies used to treat Tick Borne Infections. It was created by a LLMD Dr Marty Ross, who no longer is in practice.
Time to put on your thinking cap and come up with a protocol!
Posted by Phoiph (Member # 41238) on :
Hi Mathias,
Are you saying that you recently tested positive for Bartonella (but negative in the past), or is this a clinical diagnosis?
Just wondering how Bartonella was recently diagnosed.
Posted by Mathias (Member # 5298) on :
quote:Originally posted by Phoiph: Hi Mathias,
Are you saying that you recently tested positive for Bartonella (but negative in the past), or is this a clinical diagnosis?
Just wondering how Bartonella was recently diagnosed.
Correct! I tested positive through a MDL test. I've been tested for Bartonella almost everything time I've had a flair up as a rule out. This time it came back positive (with Lyme of course )
Posted by nature24 (Member # 52800) on :
for bartonella I took the tincture bart from the brand Epigenar, it contains red root and Japanese knotweed
I saw a comment about bartonella treatment on this recent thread in healing well forum
In answer to your first question, I think a lot of Lyme/co patients are on facebook in various groups and chats. I know folks in my area are.
I don't have bart so can't answer to that, but I do have Lyme and when you say you also test positive for Lyme, some of your listed symptoms may be due to that one.
If any of them are, then I can let you know what has helped me. Keep in mind I'm not a doctor and we're all different re how we respond to any treatment.
For eyes, I drink mangosteen juice. It's got xanthones in it that neutralize free radicals. I drink around an ounce a day. It stops eye pain, sensitivity to light, floaters and blurred vision.
Re pain, I initially took clindamycin antibiotics for five years, which stopped the pain for me, then it stopped working and now I take turmeric, an anti-inflammational cooking spice.
It's very cheap! I get the powder form and dip empty 00-size capsules in it. One in the am and pm. It greatly reduces pain in soft tissues and joints.
Re muscle cramping, I think that is due to lack of magnesium, which is a very typical lack in Lyme patients. Taking magnesium however it works for you is recommended.
I recall the days when I had no idea what was happening, all of us "fibromyalgia" (undiagnosed Lyme) patients were taking malic acid and magnesium together.
Re the back, I have an Equalizer back massager. It has a long handle with two vibrating heads and I run it up and down my back muscles. It makes me feel better.
I also get chiropractor care as needed. I've done lots of heat, used TENS machines on my back, also used magnets, which take down pain. We need to experiment re what gives relief.
Posted by terv (Member # 29410) on :
Reddit is very active.
Maybe the problem is that when people use a search engine to find information, lymenet is not returned in the list of results.
For example, I did a search on "Help for nerve pain" which is the subject heading on one of the posts on this page, lymenet didnt return in the forums list results. reddit, facebook and quora were there though.
And now AI is providing info.
Posted by 6t5frlane (Member # 8628) on :
Love Lymenet. Found my Posts from 2006 ! Very helpful. Thank You !!!
Posted by Catgirl2.0 (Member # 51843) on :
I agree, there is reddit,and facebook now for people with questions about lyme. I check in every once in a while though.
I completely got over lyme a few years ago with energy medicine, which is my go to tool now for almost everything. It's amazing.
Posted by pigwit (Member # 9059) on :
I left the USA 15 years ago and moved to Ecuador. The food is healthier here and I have received treatments and medicines not available, affordable, and/or legal in the US.
Things are on the crazy side now, but it was a good dec8ision to come here. I still have adventure in my life and that makes up for a lot.
Posted by mlg (Member # 35383) on :
I think some navigated to Facebook and Reddit. I recovered but now have long covid. I pop in here every now and again. Some long covid patients have tested positive for Lyme and co-infections.
Posted by marie (Member # 3980) on :
I have found most are on FB and I was referred to FB sites to find a LLMD 7 years ago since I am sick again-severe neuro now. I can't follow the same people there and can't locate the same post again. It is not the same as this site. This site was the best info. People on here were supportive online and personally with help with treatment, transportation and carpooling, personal support. I think this was also the way of the world back then. Even the workplace-used to be a family atmosphere-co-workers assisted you outside the office.
Posted by marie (Member # 3980) on :
I can't find my old posts from the 1990's. Any advice. Also-old timers aren't accessible-like wildcondor. TF also can't locate on site. They helped with LLMD info & treatment info.
Posted by hiker53 (Member # 6046) on :
marie--your profile indicates you only have 565 posts since you registered in 2003. Did you change your name and have to reregister at some point. That might be the issue.
Type in a search word such as "babesia" Then type the forum such as medical.
Then type your name. After you hit search look at the top for the number of pages.
I was not here in the 1990's but I can see posts from the early 2000's.
To find someone specific you have to know the correct spelling including upper and lower case.
You also have to guess at the number of posts they have and keep guessing.
Posted by marie (Member # 3980) on :
Didn't change my name-been on since 1996.
Posted by hiker53 (Member # 6046) on :
marie--if you look at the bottom of your post, it tells you how many posts you have made and when you registered.
You registered in May 2003.
But I have contacted the webmaster numerous times and the search function still does not work.
Posted by marie (Member # 3980) on :
I didn't think that was right for my registration date?
Posted by hiker53 (Member # 6046) on :
Mare--It really is not important, so don't fret about it.
![[Frown]](frown.gif)
. I'm having some weird symptoms and am looking for advice from other than my LLMD.
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