How do you know if you have Lyme Meningtis.? How is it dx'd and what is the best treatment?
I have a severe headache and stiff neck as my main symptoms. I am still functioning and working everyday. It is bad but not to the point of being bed ridden.
Currently on flagly/zithro and malarone
Posted by feelfit (Member # 12770) on :
Boy, I sure would like to know the answer to this question too!
Posted by Vermont_Lymie (Member # 9780) on :
Best diagnosis would be with a llmd.
Unfortunately, in my experience with non-llmds, lyme meningitis is often diagnosed with a spinal tap.
I say unfortunately, because lumbar punctures can be more trouble than they are worth and I would not recommend one.
The standard tx once diagnosed with lyme meningitis is IV rocephin.
Severe headaches and stiff neck; sure sounds like it could possibly be lyme meningitis. What does your llmd say?
Posted by tonyp (Member # 14960) on :
My LLMD says that my stiff neck could be related to my DDD in c6 and c7 and my headaches is related to lyme. I have an abnormal SPECT which shows mild to moderate hypofusion.
Do oral abx clear up lyme meningetis or do you have to go on IV
Posted by Vermont_Lymie (Member # 9780) on :
tony,
My best advice is always to get the best llmd you can and then stick with their treatment advice for at least 1-2 years!
The decision to IV or not to IV usually depends on alot of factors; health and symptoms, ability to pay and insurance, prognosis, time and personal factors, etc. I'd like to think that it was always decided on health grounds, but often personal factors like the need to work are primary.
Rocephin, a 3rd generation cephalosporin has good blood brain barrier penetration, which is why it is a standard tx. So does a high enough oral dose of doxy.
I am not a doctor, so the standard disclaimer is that this is not medical advice!
Personally, if I had an abnormal SPECT and could afford it, I would seek to do at least 1-3 months of IV abx and then move to orals. Please see Dr. B's guidelines for some guidance too. Best wishes.
Posted by tickedoffjan (Member # 15944) on :
I actually just had meningitis and was in the hospital for 7 days. They had to do a spinal tap to see if it was bacterial or viral. It sucked because I have scoliosis (sp?) and they kept hitting bone.
I kept asking the ducks if it was from lyme and they kept "ducking" the answer. I was in such excrutiating pain I could have cared less what the root cause was.
Imagine the worst pain in your life and then add some more and that was what it felt like to me.
Posted by GiGi (Member # 259) on :
I was diagnosed with Lyme Meningitis caused by bartonella henselae - identified by spinala tap. I had 5 spinal tabs the following three months of IV Rocephin and when none mere could be found, IV's stopped. IV's did not bother me, because I had lost all feeling down my back.
2 more months of oral and I "was healed".
It took me four more years to get well the alternative way. Most of it I have posted here.
My husband came down with what looks like Parkinsons, but merely some symptoms, some symptoms typical to MS, etc. I now treat him with Lyme Meningitis, every Bartonella nosode, encephalitis nosode that I can get my hands on, as well as all possible infections from Herpes to Epstein Barr to whatever else he tests for with energetic testing combined with the Bionic 880.
We are lowering the load every day eliminating the bad - parasites, heavy metals, environmental toxins, chemicals and plastics, pesticides, etc.
Now we have found that he has several allergic reactions (i.e. thus cannot detox all of it) toward mercury, lead, copper and nickle, and gluten, all of which is enough to cause plenty of neurological symptoms, especially the wheat allergy/gluten/gliadin. These allergies (misinformation the body deals with or auto immune responses) we discovered with the testing of a drop of saliva. www.allergie-immun.de None of these allergies had ever shown up until this test (DNA). So now we are treating these allergies with "drops" accompanied and supported by Bionic 880 treatments.
We are also addressing damage repair with the Bionic. The borrelia infection was eliminated with 6-7 Bionic treatments and is gone. We have also eliminated all co-infections. We are merely down to cleanup of everything else and most of all attempting to repair the leaky gut problem caused by the allergies.
My husband has no pain and is up and walking every day. Gaining back weight, looking great, just not ready for a marathon yet.
It is hard work and takes a lot of gusto to keep at it. Learn, learn, learn, and don't think this is merely the result of a tick infection. It is a lot more than that as you will realize when you get all through it.
The best to all,
Take care.
Posted by blinkie (Member # 14470) on :
My husband had meningitis before we knew he had lyme. He was in the ER though and they did the spinal and could not find the bacterial source so they called it viral. Funny thing though, they only treated him with abx, not anti virals.
Overall, they called it spinal meningitis which I guess means they could not find the cause. It is also called somthing else, of which, the name is escaping me at the moment.
Posted by carly (Member # 14810) on :
tony,
I can tell you of my experience with lyme meningitis.
They call it viral meningitis or "aseptic" meningitis if there's not a bcterial cause.
After my experience I found out that a mildly elevated bacterial load indicates lyme meningitis.
They'll probably still call that aseptic meningitis.
As to your question of how lyme meningitis is diagnosed, I wonder if it ever is properly diagnosed at the time.
As to your question about how do you know if you have it. I can only tell you about my experience. I don't know if / how the severity varies.
As for me, walking around, going to work, even getting out of bed to answer the telephone were out of the question.
I was not able to drive to the doctor. When we got there, she sent me to the hospital right away.
This happened within a few days of the onset of the stiffness / headache.
Your question about the best treatment: for me IV rocephin, no doubt.
Yes, my non-bacterial meningitis was also treated with antibiotics.
Posted by feelfit (Member # 12770) on :
yes but what did not allow you to function?
Severe headache? Stiff neck? Fever? Head Pressure? Nausea?
lightheadedness?
Thanks, Feelfit
Posted by carly (Member # 14810) on :
feelfit-
I had stiffness from 1 thigh, through back, neck and head.
Severe headache & light sensitivity (as with a migraine)
A rash on both sides of body (trunk) , neck and head.
Nausea / vomitting and dizziness.
Overall weakness.
I guess the combination was incapacitating.
Posted by feelfit (Member # 12770) on :
thank you Carly
Feelfit
Posted by lymeladyinNY (Member # 10235) on :
I had Lyme meningitis at the end of 2007, though it is self-diagnosed.
This may sound strange, but before I have a severe bout of illness I have out-of-body experiences. Two weeks before I was hospitalized for 8 days I had a profound out-of-body in which I felt I was lifted from my bed, saw an ornate glass ceiling with light behind it, and then was gently lowered back to my bed.
After the experience I knew I was probably going to become very ill, and I did. I had a severe stiff neck, headache, nausea and gagging, and could not walk without stumbling and having to put my hands on the floor.
My husband called the ambulance because he thought I was so ill. They did a spinal tap and the ER doc wanted to send me home. Thankfully, a hospitalist intervened and had me admitted.
I was put on 3 types of IV antibiotics - rocephin, doxy, and one other that I'm sorry, I don't remember the name of.
I was given narcotics repeatedly because every time they wore off I would scream. I had INTENSE pain in my spine. It's hard to describe but it felt like lightning searing down my back.
I made the mistake of telling the doctors on my case that I have chronic Lyme. The spinal tap proved negative and they started to get skeptical about me. They did find herpes simplex, but continued with antibiotics.
Finally, on the day before discharge an intern came into my room (I had no roommate at the time) and told me that I was being discharged and that under no circumstance would I be allowed to stay. He said that I would not be allowed to ever return to that particular hospital for Lyme disease treatment again, and I should go somewhere else if I continued to have problems.
So, though I was still screaming with pain, I was kicked out of the hospital. My LLMD stepped in and continued me on IV doxy for two weeks longer, through the PICC line, plus oral narcotics.
Unfortunately, I developed blood clots and chemical phlebitis in my chest. My arm was completely purple with bruises. I felt like I'd come near death and I was emotionally battered as well.
It took several months to feel better. I became extremely anxious and to this day believe I suffer post-traumatic stress from the experience.
Any time my neck gets creaky or crunchy I start to worry - Oh, God, is it coming back? I never, ever, ever want to experience that hell on earth again.
I pray you never get as bad as I did with meningitis. Oh, my official diagnosis was "encephalitis of unknown cause". I guess that's better than "nutcase"!
Take care, and best wishes. - Lymelady
Posted by steveandamyb (Member # 18522) on :
Can meningitus be detected with an MRI?
Posted by Wimenin (Member # 15294) on :
While meningitis can be detected through a spinal tap (lumbar puncture), I wouldnt recommend it unless you're extremely sick at ER anyways. Realize that detecting Bb in csf isnt easy and often the test is innaccurate.
By consulting with a qualified neurologist, they should be able to determine if it is meningitis, encephalitis, or both. An MRI will show some inflammation or brain damage, but not necessarily everything. Bb doesnt show up in an MRI.
As for the cause, thats hit and miss...viral, bacterial, fungal, etc..and usually only found through a LP, if at all.
Here is some info on menin/enceph and healing from it.
Good luck...
Posted by steveandamyb (Member # 18522) on :
Our neurologist was disapointed that the infecteous disease doctor removed the picc line after less than a month of treatment.
We now know the ID doc follows idsa guidelines. After learning more about the disease we know now she was mearly herxing.
The neurologist seemed much more familiar with Lyme. I wouldn't consider her an LLMD but she has been, by far, the closest we've seen.
She ordered an mri to be done to "rule out" anything neurological. It came back "normal" so she confirmed the original lyme dx.
We have a reputable llmd that has agreed to see my wife but don't have an appointment as of yet.
In my wife's peak period she is having severe pain in her head. She desribes it as extreme pain in her skull versis a bad headache.
When we were at the neurologist office she brought up the issue of lyme meningitus but then said the mri was clear.
Any thoughts?
Posted by bejoy (Member # 11129) on :
I mainly do alternative type treatments due to my lack of insurance coverage, and fungal issues, but I encourage people to use any path that works for them.
For lyme meningitis I use a combination of LYM homeopathic and a small amount of Venex bee venom ointment. It has worked very well each time I have had a flair up.
I can't say for sure which pathogen or pathogens is behind my meningitis, but I suspect a combination of Borrelia and lyme meningitis virus.
Initially I used a Bicillin type product for about six weeks, and that made a difference in the neuro symptoms too.