Lyme Meningitis - Have you had this?

If you feel that bad i would go to the ER. However, know that they usually do not know lyme. Do you in fact have a diagnosis of lyme? Are you seeing a doctor? Fever? The ER would run some important tests other than spinal tap such as c reactive protein and d-dimer to test for inflammation which may be helpful in a diagnosis. Feel better.

As I understand it, Lyme patients can have what they call aseptic meningitis. That would be a swelling that is not viral or bacterial but causes terrible head, neck and back pain. On and off it has been one of the most awful of my symptoms as I have been getting treatment. For some people it is part of the original symptoms, for others it is part of the herxing and healing process. Your doctor could proscribe some pain killers to give you some relief. Hope you feel better soon.

Hi SickInsanity, I emphasize with you and feel that I have some information that can help, even though you already went to the ER.

I was diagnosed with Lyme disease and Lyme meningitis as of August, 2011 (very recently). If you do have Lyme, it is very possible that you could have Lyme meningitis. Lyme meningitis only means that the bacteria that cause Lyme have also spread to your central nervous system (brain, spinal cord). I don't know when I was bitten, but in my case it was likely only somewhere between a few days to a few weeks before my central nervous system was infected. As far as your symptoms, pressure build-up in the head and a stiff neck are classic signs of meningitis. Also, meningitis is fatal in only 10-15% of patients. Thus, meningitis is only fatal in the minority of cases; the rest live with an uncomfortable headache. In my case it was mild, but that was still the worst headache I've ever experienced. Regardless of what doctors tell you, you need a spinal tap. Lyme meningitis requires more powerful antibiotics (the type administered through an IV over a period of weeks) and if you are treated with anything less powerful for, say, regular Lyme, the meningitis will likely stay.

My second set of comments is a actually a caveat. I have nothing against doctors; my dad is a award winning neurologist and I was premed during my entire undergraduate career. However, you know your body better than any doctor and you should take their diagnosis and advice with a grain of salt. Doctors rely on your description regarding how you feel and the pain you felt. Unfortunately, my guess is that so many people go to see doctors and overrate their pain and symptoms that doctors can't and usually don't discern between someone like you telling him or her that you had a splitting headache where you could feel your pulse inside your head and it hurt from a frequent complainer who says that their headache is "SO BAD." In my case, when I first went in to the ER, despite having had a headache like you described, I wasn't given a spinal tap. The attending doctor tested for Lyme (good) but heard my symptoms and didn't order a spinal tap (bad). When the results came back positive for Lyme, you can bet that the doctors there were complacent and felt that they did their job and caught the disease. It was actually my dad (the neurologist) who stepped in and told me that splitting headache + stiff neck means you need a spinal tap. Thus, I went back to the ER and much to the doctors' surprise, I had an elevated white blood cell count which meant that there was an infection somewhere in my central nervous system. This changed the course of treatment entirely.

Your pain is not imagined and you should not be complacent just because a doctor told you that you were imagining it. If they could experience what you were feeling they would take you seriously, but all they have to go in is your word, and the average person... complains quite a bit over nothing. Also, the average doctor is not a specialist. Do you know how many people get meningitis in the US every year? No more than 3000. That means less than one in one hundred thousand people get the disease each year. Now I ask you, do you really think that the average doctor is prepared for the one person in one hundred thousand like they should be? Well, probably not. Headaches caused by a pressure build-up as well as neck stiffness is NOT consistent with regular Lyme. Anyway, from the fact that they ordered a CT scan and sent you to a neurologist, they seem to be overlooking an infection of the central nervous system, and in this case I feel that it was a careless mistake.

Even if test results come back positive for some other disease that can cause headaches, you need a spinal tap. The results will be unequivocal- you will either definitely have an infection or you won't. In fact, your symptoms scream of the need for a spinal tap. It's just unfortunate that doctors become so easily jaded by patients with regular illnesses that they seem to forget that they will run into people with unusual and esoteric medical conditions.

just out of curiosity, would a vaccine against meningitis make it more unlikely for a person with lymes to get it? or is it completely different than the meningitis many are vaccinated against?

also, display_name- is the headache something you had that was constant? ive had awful head symptoms, where i literally feel burning and flowing sensations in my head, a low grade fever, a stiff neck, but it all seems to fluctuate so much! sometimes its hardly noticable and other times i wonder if i too should go to the ER.

teeners,

Like what you're experiencing, my symptoms fluctuated. There would be some times that I really felt very fatigued regardless of the amount of sleep I got, with a headache and chills. Other times (during the same day), I would suddenly feel great for several hours; my symptoms fluctuated (usually all together) so that at my best I began to question whether the symptoms at its worst was really as bad as it seemed. this delayed my trip to the ER.

teeners, I've read a few things you've posted. You said that you've had a headache accompanied by neuro symptoms and it's been going on since May. Headache + stiff neck + neuro symptoms is serious stuff. The headache you described is also troubling- it sounds far more painful than a regular headache. My headache at it's worst made me feel like my head was splitting. I felt so much pressure that I could feel my pulse, and it hurt. Anything that would get my heart beating faster than its baseline resting rate would put even more pressure, and pain, in my head. It was without question the worst headache in my life. I ate Advil like candy and felt no difference.

Have you seen at least one doctor about this since May? If you're still experiencing the symptoms you described, you need to be seen immediately. My symptoms were far more benign than that and I was told that I should go to the ER by a nurse when I tried to set up an appointment with a doctor. I only experienced the splitting headache and stiff neck for two to three days, my symptoms after that were uncomfortable, but far less worrisome.

If you do choose to go to the ER, and I hope you do, make sure to request a spinal tap. The preliminary results will come back quickly, and even if it turns up negative the doctors will be able to rule out an infection as a cause.

Yes, it is common with herxing.

I am in similar pain right now. You would do well to try some detoxing and relaxation techniques.

Going to the ER is very necessary if you feel your life is in jeapordy, but otherwise, it is a poor place to be if you don't feel well.

They'll have to run tests before they give you anything and consult with a specialist like a neurologist (that you will be seeing next week anyway). They might be able to give you a painkiller that works better than what you have been given, but not necessarily.

It will pass with treatment if it is a herx as I believe. (But I'm not a medical professional and cannot even see you, let alone diagnose you!!!)

Feel better

I was diagnosed with Lyme Meningitis after 6 days of fever and only mild to moderate headaches.  I went to the ER.  A CT scan was normal as well as blood tests.  A MRI (with and without contrast) revealed the infection.  A lumbar puncture confirmed a few days later.  i completed a 28 day intravenous treatment one month ago and I have had a horrible month since.  I am concerned that I didn't receive adequate treatment and recently had to start anxiety medication.  I do not classify what is happening to my head as headaches but more of pressure and heaviness.  Crazy fatique and a feeling of being disengaged comes along with it.  Although I fully expect my infectious disease doctor to blow me off again, I will be knocking on her door next week.  A recent neurologist visit didn't go well either although she did order another MRI and EEG.   i hope my story offers something useful to you and encourage you to be persistant. 

i am at a loss as to why I am not improving as expected.  I am keeping a daily journal of symptoms and encourage you to as well.

So this thread is probably dead, but hopefully this can help someone else who is going through, or thinks they may be infected with LM.

Lots of people don't know that just because you don't get the red ring, or rash not mean you haven't been exposed to Lymes. I never had the rash or a bite mark. Also my doctor believed the virus / disease harbored in my body for up to a year. I had a severe case of Lymes Meningitis. It broke the brain barrier and was found only through my spinal fluid. A lot of doctors, including my neurologist didn't believe I had it, he actually scoffed at the diagnosis of my ER doctor, she saved my life. LM can kill you when untreated.

I was sick for 2 weeks before seeking help, and the ONLY reason I went to the ER was because I developed Bells Palsy. Paralyzation of the face on one, or both sides of your face.

It started one morning, I woke up with a stiff neck and a headache. Thinking I slept funny I took Tylenol and tried to massage it out. Nothing helped. Absolutely nothing. After about a week, it was worsening and my tongue started to feel numb and itch. I went to my primary care doctor and he prescribed me Flexeril thinking I was just having severe muscle spasms. He also ordered a Cat Scan because my sister had a brain tumor, and he wanted to make sure I hadn't developed one. My sister suffers from Kushings Disease. The next few days I noticed my face wasn't responding very well. One night I looked at my mother and she asked me to raise my brows and smile. The left side of my face did not move. She immediately took me to the ER. At that time I felt okay, I could talk with a lisp and was joking around taking pictures of the IV in my arm and the vials of spinal fluid, I had an intense headache that was making me nauseous. They gave me Phenergan and Morphine.

My doctor after 2 minutes in my room knew exactly what was wrong with me, she preformed the spinal tap and blood tests just to confirm. I was admitted at 1am and at 4am I was given more morphine for pain. Around 9am the neurologist and another doctor came in to examine me. They were convinced I didn't have Lymes meningitis just because I could touch my finger to my nose and lift my legs. The normal "let's see if you have brain damage test". They wanted me to go home and rest until they had the results, insulted ours and my admitting doctor's intelligence.

My mother, a nurse at that hospital said, "and what if her tests come back positive? You want her to wait a week before starting treatment? No. I want her started now." I agreed and told the doctor, "better safe than sorry." He reluctantly agreed...

28 days IV Rosephrine therapy, Doxycycline pills, Phenergan, dilaudid (for pain but I did NOT take it... I do not like painkillers / narcotics that make you "high" or hallucinate) and some other medications.

I was violently ill, during my treatment I didn't leave my couch or bed for weeks except to be driven to the hospital for my daily IV therapy. The neurologist called a week later and apologized to my mother and I. I did have LM. I visited the hospital 3 times in a week and a half for the headaches and severe pain and worsening Bells Palsy. The Palsy did not go away for quite a long time, even after finishing treatment.

I still, 3 years later feel the effects of the Lymes. Because it affected my brain, I have some trouble with my thoughts, and speech. I also developed some mental disorders, and some I already had became much much worse. Although realizing "I could have died, another week and I would have been dead", is not exactly healthy for the mind.

I developed severe anxiety disorder, bipolar disorder, worsened borderline personality disorder, PTSD, and worsened schizophrenia. I also suffer from episodes of the same back, neck and head pain I had. Nausea, stomach pain, and many body aches. It has severely affected my life. I wouldn't wish this on anyone. Luckily the Bells Palsy never came back. LM is NOT something to mess with, if you think you may be affected by Lymes, go to a hospital right away. If you pull a tick off and you develop the red ring, GO TO A HOSPITAL OR DOCTOR ASAP. Lymes affects you even after years, Gold Seal is supposed to ward off attacks and relapses. I never tried it but deal with it as best I can. Many doctors will disagree and tell you, you're not sick because of the Lymes. Even when blood tests show the antibodies or infection "dormant" in your body.

You know your body, get help. Any questions or want to talk email me!

@Hogan MommyWife - that is terrible what you had to go through. The technicians that were rolling their eyes at you will probably never, ever, forget that they were wrong and the implications of what may have happened if you didn't have such a smart, caring mother. I'm sure your suffering will help others that they encounter with similar symptoms anyhow.

To sickinsanity - I once heard that if you can turn your head from side to side and aren't in searing pain or super worse bad pain - then it is probably not meningitis. I wish you the best of luck, hope you feel better.

Let's clarify something - Hoganmommywife only had 28 days of IV therapy - she still has an active infection is why she is still having such issues!

28 days of treatment is not enough to push this disease into remission.

Kiteii - There is no way to get in contact with Hoganmommywife, as they never activated their email option. They joined, made this one post and just disappeared. Please feel free to share your questions and concerns with us though!! We are a very diverse group of people and have had all kinds of experiences that we would be happy to share and offer opinions on! Quite a few of us here have experienced the Lyme meningitis.

Hi Cindyhuds!
Welcome to our forum! So are you in treatment? Which infections do you believe you have?

If you haven't already, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from!

We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!

Let us know if there is any information that we can help you find or help you find any answers to your questions.

I forgot to mention I also have swelling on my neck, same side as the pain (neck, head and eye-right side). It feels like a pretty large lump at this point as its concerning. Has anyone else experienced this type of inflammation along with these symptoms?