Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
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.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Probably FB or another platform. What weird symptoms are you having?
Posts: 1856 | From Maine | Registered: Jun 2004
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posted
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.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10235 | From Illinois | Registered: Aug 2004
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
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.
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
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)
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
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!
Posts: 3221 | From Florida | Registered: Nov 2016
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
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.
Posts: 2083 | From Earth | Registered: Jul 2013
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
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 )
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
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.
Posts: 13171 | From San Francisco | Registered: May 2006
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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.
Posts: 854 | From Somewhere | Registered: Nov 2010
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posted
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.
Posts: 159 | From Ecuador | Registered: Apr 2006
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posted
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.
Posts: 722 | From CA | Registered: Dec 2011
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posted
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.
Posts: 580 | From southern new jersey | Registered: May 2003
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posted
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.
Posts: 580 | From southern new jersey | Registered: May 2003
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posted
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.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10235 | From Illinois | Registered: Aug 2004
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