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Lyme Meningitis - Have you had this?

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Posted 4/22/2013 5:48 PM (GMT 0)
vcast- it's near the posterior cervical, but it's closer to my spine, if that makes sense? The odd thing is that last night the pain migrated to the left side of my neck & head, and sure enough the swelling moved to the left side as well. I talked to a pain spec today about the neck pain and headaches. She thinks its arthritis causing it, and even agreed it could be related to Lyme.

That's my good news for the day, I found a pain specialist that believes I have Lyme. I feel so lucky, so thankful. She even said she wants to work WITH my LLMD. *huge sigh of relief*

Anyway, sorry for the delayed response, I forgot to check the "notify me of responses by email" box.
Posted 4/22/2013 5:54 PM (GMT 0)
Hi Lymer, how was your appointment today??
Posted 4/23/2013 2:45 AM (GMT 0)
Hi MarieLS! It went better than expected. The pain specialist went over all my records, and we talked for quite a while about my symptoms. she actually agrees that it's Lyme! She plans to work with my LLMD to help me through the treatment. So it definitely went better than anticipated!

How are you doing? Any progress? Are you still planning to go on your soon?
Posted 4/23/2013 5:18 PM (GMT 0)
Good news Lymer, about the 2 drs wanting to cooperate! So you're reassured about your worries about meningitis? I've had been thinking about that too, years ago, I have to admit it, but I'm so used to having those terrible headaches and neck and back pains that I don't worry about it anymore - if I developped a fever and wouldn't be able to put my chin on my chest I would be alarmed.

Another step forward for you!!

I'm doing ...??? Well, what do I have to answer to that? I'm now trying to reduce inflammation with herbs and aspegic, so I hope that'll help. Doing Buhner's protocol, but far from being on full dose, doing very slowly. Have an appointment on the 8th, I'll see what the dr says then. Symptoms still present, but still attacking those little creeps!!!
Posted 4/27/2013 5:52 AM (GMT 0)
Marie-
I'm sure you were asking how it went as it pertains to the topic of my post, meningitis, but for some reason I didn't answer that part?! Wow, sometimes I think the brain fog is clearing, and then I see something like this, and in hindsight realize I was in a major haze that day. Ugh!!!

I didn't ask specifically about meningitis but the dr did say that she thinks it's arthritis causing the neck pain, etc. She also thinks Lyme is the underlying cause of the arthritis, which for some reason hadn't dawned on me (even though I know arthritis is extremely common with Lyme).

I think my brain functioning is way more impaired than I had thought. It's taking me waaaaay to long to process things. As in, days/weeks/months. Sheesh.


Have you had any luck reducing the inflammation with herbs? I've heard a lot of good things about the Buhner protocol. I hope you can build up to a full dose soon and start healing. This is a long, difficult road ahead of us, but I hope you're making progress.
Posted 4/27/2013 6:21 PM (GMT 0)
Lymer,

I had times I thought about meningitis, but that pain and discomfort has been there for so many years that I couldn't possibly survive all those years having meningitis - lol

I know about the brain fog, NOT getting better at all. Sometimes I feel so stupid, thinking I can't be that daft?? Sometimes it's really funny:
Sometimes when talking to someone I'm thinking 'go on you, keep on being cheeky, keep on grinning and looking down on me (some people have no shame) making smart comments, I'll talk you right under the table once I'm cured' - LOL

I'm doing the anti inflammatory treatment right now: high dose of aspirine (diuretic!!! wow, but not loosing weight right now, strange), berberine and zyflamend, with omega3. It took a while for the delivery to arrive, so I'm waiting for results.

Buhner's is going well, easy on the system, and easy to make adjustments to dosage. when herxing too much.

Thanks for asking

Hope you're having a nice weekend,

Marie

Posted 7/18/2013 3:23 PM (GMT 0)
I was diagnosed in 1998 w/lyme spinal meningitis My head felt like it was going to explode I was going to the doc every week until they took me seriously it was the bell palsy to which at first my doc thought i was drunk at first is when they thought something was wrong so many docs do not take lyme seriously you must have a spinal tap to confirm, I feel for anyone who gets to this point i was shivering in pain all over be your own advocate keep on them dont let it go
Posted 7/26/2013 3:27 PM (GMT 0)
Hi folks,

Interesting reading... I started out with lower back pain in the lumbar region. After three days could not sleep or do anything because of the pain. After a visit to the hospital they tested for Lyme and it was negative. LEft the hospital and come home with pain meds... They did not work Flexrol and Oxycodone.. Then I went back again because I still had severe pain... Was admitted for four days and came out with steroid for a treatment. It was Presidone. IT only made the back pain more severe. OVer the counter drugs like advil or tyneol did not work either...
Went back third time and my wife demanded a spinal tap.. After the test it came back positive and the lyme was compared and that was positive. They put me on Rocefin for 14 days. Not sure if that is enough or not. In addition, I am taking Nerotin. I hate the drug and it effects... Not sure If I still have the lower back pain because of the neortin...

Trust me demand a spinal tap if you have the symptoms describe. The dr's always said I could move my chin to my chest and back. I told them yes but I had pain down my spin and to my lumbar region... They would not do it... After the dr in the ER did the tap I was finally put on the right meds...

I am looking at Acunpture, and RIFE treatment as well to help with the this problem and get off the drugs... Any advice would be greatly appreciated... I am also welling to share my experience if you need help..
One piece of advice I would give is if the Dr is not going to perform a Spinal Tap then make sure he is willing to document his desire in the EMR application or daily notes... You are basically calling him out and asking him to document his unwillingness. He might have second thoughts... It is also a CYA for you if you have any case against the system because of poor diagnose or unwillingness to perform a test.

Scott
Posted 6/18/2018 7:57 PM (GMT 0)
Yes, dealing with this every day makes me feel like a rabid dog, about ready to pounce on anyone in my path. the doctors at the ER, are clueless, they seem to think they can talk you out of your ailments, hmmm... just wondering what type of medicines they have studied to get where they are today... grrrr!
Posted 7/4/2018 2:51 PM (GMT 0)
aseptic mennigitis-head neck issues- don't go years just treating pain.
Its worth getting yourself a checkup with a biological dds-best to get a cavitat scan
Posted 7/4/2018 3:38 PM (GMT 0)
I guess I always assumed head and neck pain/tension was one well known lyme symptom all lymies had at one time.

I try not to get to caught up in medical symptom definitions since they are more common on web pages vs clinical settings and can occasionally cause confusion.

Such as: aseptic mennigitis vs mennigitis

Aseptic: Without contamination with bacteria or other microorganisms. /www.healthline.com/health/aseptic-meningitis#causes

But then sites go on to say "aseptic" mennigitis can be from viruses or bacteria. Very contradictory.
Posted 7/4/2018 3:45 PM (GMT 0)

magoo2 said...
aseptic mennigitis-head neck issues- don't go years just treating pain.
Its worth getting yourself a checkup with a biological dds-best to get a cavitat scan


had to look that up "A Cavitat Scan is an Ultrasound of your jawbone and shows how healthy the bone is under each tooth." Cool.

You would this regular dentists would do this too, I was never offered it with tooth aches that had no other imaging visual cause.

The options / opinions were always:
1)bruised tooth and should go away
2)didnt go away? - prob need root canal

too much guessing there for me, U/S sounds better
Posted 7/4/2018 5:48 PM (GMT 0)
A cavitat is the best way to tell if the bone is growing well. I haven't had one is a couple years but my tummy is feeling sick so I am getting a follow-up cavitat soon.

My dds and docs miss dental. Google the research and you will discover dental issues can cause issues from head to toe. Also will lower immune system and open the door for lyme. Their are many docs that always treat the jaw. Dr Rau at Paracellus, Dr Yu in St Louis Dr Klinghart (helped Yolonda) and many more. Don't go years with lyme and not get checked.

Regular dds miss infection all the time-be careful with root canals-google the research they are bad
Posted 7/5/2018 12:49 AM (GMT 0)
I hope I don't ever need a root canal. I guess the option is remove the tooth and replace with a bridge....or implant...
Posted 7/5/2018 2:00 PM (GMT 0)

magoo2 said...
A cavitat is the best way to tell if the bone is growing well. I haven't had one is a couple years but my tummy is feeling sick so I am getting a follow-up cavitat soon.

My dds and docs miss dental. Google the research and you will discover dental issues can cause issues from head to toe. Also will lower immune system and open the door for lyme. Their are many docs that always treat the jaw. Dr Rau at Paracellus, Dr Yu in St Louis Dr Klinghart (helped Yolonda) and many more. Don't go years with lyme and not get checked.

Regular dds miss infection all the time-be careful with root canals-google the research they are bad

CAVITAT machines are no longer manufactured. You will probably have a hard time finding one of those. They have been replaced with the Conebeam scan.
Posted 7/5/2018 5:49 PM (GMT 0)
A cavitat is the single best way-way better than a cone beam. Ask around and find one-I get mine don't in 10 days. They take a cone beam also but its the cavitat that finds the non healing bone (think smoldering infection).
I would call the ioamt and ask if they no of one in your aera
Posted 2/19/2019 10:37 PM (GMT 0)
Yes I have had this. The doctor at the hospital told me that I was the 4th known case. Good news huh. I contracted Lymes in 2002 and was missed diagnosed until 2005 when I found that I had lymes and rocky mountain spotted fever together. Terrible time. I was treated with antibiotics and never felt really good again. In 2007, I came down with aseptic meningitis from lymes. When I got to the hospital, I had around 105 temperature. I could not hold my head up. My wife told the ER doctor that I had lymes disease. They did the spinal tap and I had many doctors pulling and checking blood for anything. He treated me for lymes. I have never had a headache like that. My brain swelled and I lost the ability to talk. I lost all of my muscle mass and was unable to walk 30 feet. I used to run 5 miles a day. It took a year to walk a mile once I was out of the hospital. My doctor asked if he could use my data to publish in a medical journal. I am not sure if he did and cannot find the publication. Bottom line, you have to get a doctor that specializes with lymes and change your lifestyle if you want to live a close to normal life. The good news is that you CAN do it! A good "I can do it" attitude is required. As a result, I cannot read as well as I could and forget words in a sentence. I feel for anyone that has this awful disease and would share my story and health practices if it would help.
Posted 2/19/2019 11:12 PM (GMT 0)
Hi survivor - welcome!

Sorry to read how much you have suffered.

How are you feeling now? Are the cognitive issues the only symptoms you have ? Or do you have more?

I’m wondering if you still have active infection. Were you also treated for Babesia and Bartonella?
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