Hello all!! I was wondering if any of you have had or know anyone who has had re-accuring menengitis???
I have had menengitis 4 times!! After having it 3 times in a 12month period I was sent to an infectious disease dr in Feb 2004 who tested me for lyme.
I was positive and he treated me with 30 days of IV Rocephin. A year later I went in for a female checkup and mentioned the pain in my hands (arthritis) and my GP ordered another lyme test. Which again was positive.
Switched to a different duck and again the same protocol of 30 days of iv rocephin. (even though it didnt work the first time)
I found an wonderful LLMD, Dr. C and went to him and did 6 months of abx. What I failed to do was go to my follow up appt with him. (didnt have the money to go)
Had my GP run another lyme test and it was negative so I thought that I was better. That was Jan 2006.
In May 2007, it all began again... I had a horrible headache and stiff neck. All too familar, I knew what it was. I started running a fever and vommiting. Went to ER again and of course they did a spinal tap and I again had menengitis. This time they had me admitted to the hospital for further testing. I was there a week. All testing came back fine, except... Tested positive for LYME again.
Same infectious disease dr put me on yet again.. a 30 day iv rocephin treatment. Just pulled the pic line today. You would think by now, he would figure it out that 30 days is not enough. He told me he has never had a patient with reaccuring menengitis or lyme that does not go away with 30 days of rocephin.
It is sooooo frustrating trying to talk to this doctor who has no interest in learning how to treat his patients. He only treats by CDC guidelines, even though he sees with me it is not working.
I know that having menengitis means I have neuro lyme, and I have made yet another appt with Dr C. This time I intend to keep on going no matter what the test results say.
I have headaches everyday, memory problems, some cognitive problems with words, writing, etc. i have bad leg pain in both legs, bad foot pain in my left foot, night sweats, stomach pain. I have diverticulosis, and early colitis (recently discovered) cant sleep at night, and tired all day, weak and wear out easily, the list goes on.. Of which I attribute to LYME.
My question is does anyone else keep getting menengitis or know anyone who does??? and what does this mean?? and could it be anything else besides LYME??
It is truly very scary when this happens and the last time in the hospital I was isolated, and asked if I wanted to see the priest or my pastor and if I had a living directive.
I would truly appreciate any feedback from you guys. I do read the posts all the time and i have learned more from all of you than I have from the Doctors.
Thanks for being here... All of you.
Sandra
Posted by salydega (Member # 7309) on :
up^^^^^^^^^^
doesnt this happen to anyone else??????????????
Posted by clairenotes (Member # 10392) on :
Sandra -- yes, recurring meningitis can and does happen with LD. It only means that you really need to continue to treat. And I am told that you need to continue with treatment for at least a few months after ALL symptoms have abated or it can come back.
If it is the Dr. C I am thinking of, many good things have been said about him and you should be in good hands.
Also make sure to read and research as much as possible here. Use the search key to try to find other members who have had meningitis/neuro lyme in order to understand what worked for them.
But even so, remember that treatment is often very individual. That is why this illness is sometimes difficult to navigate. Keep a daily journal and write down what seems to work for you and what does not, etc.
Best wishes,
Claire Posted by sonwithlyme (Member # 10942) on :
my son had lyme-mennigitis when he was first diagnosed 2 years ago. Had IV for weeks, went without treatment for the following 3 months, but became very ill, went to a LLMD who immediately put him back on antibiotics which was November of 2005 and has been on ever since, now on Rifampin, Biaxin and Minocin. Hasn't had any more spinal taps or diagnosed with Mennigitis but has all the headaches, muscle/joint pain, chest pains, memory loss, confusion, which is just part of Lyme. Maybe you need to have extended oral antibiotics after the IV treatment.???? Good Luck
Thanks for responding I do plan to continue my treatment this time. I thought that I was better, with the negative test and all. Yes Dr. C is a great Dr., I just have to keep on going. (it gets expensive)
I do read alot on here, almost daily since I have relapsed. It seems the only place I can go where people understand what I am going through.
Thanks Again.
Sandra
Posted by salydega (Member # 7309) on :
sonwithlyme;
Thank you for responding I am sooooooo sorry to hear your son has this. I can completely sympothize with him though. The headaches are constant, daily.
He has been on ABX since 2005?? Is he doing any better??
That is a long time on medication, wow.. I am not looking forward to that.
I have had 3 rounds of iv rocephin but only 30 days at a time and then they stop it. I know I need much more than that now.
Thanks again
Sandra
Posted by Vermont_Lymie (Member # 9780) on :
Hi Sandra,
My understanding is that neurosymptoms can be caused by co-infections like bartonella as well.
And if you took only IV rocephin originally, there were all those cyst forms of borrelia probably not dealt with.
Best wishes and I hope your treatment eliminates the meningitis once and for all -- I had it too due to lyme and it is awful.
Posted by salydega (Member # 7309) on :
Thanks Vermont Lymie for your feedback and well wishes. If you have had menengitis you know the pain and understand why I dont want to get that again.
I dont believe that I have been tested for Bart. I see Dr. C in July and I will ask him to test me for that and any other Co-infections.
Thanks again
Sandra
Posted by djf2005 (Member # 11449) on :
ive been treating lyme for 3 months and just started babs.
ive had an extremely stiff neck along with pressure in my neck and head since nov 06
hang in there, it will get better with treatment
mine has gotten better, but has not resolved
Posted by sonwithlyme (Member # 10942) on :
Sandra, Dustin was on IV Rocephin, the preferred treatment, however he developed an allergic reaction 2 weeks after he started and ended up back in the hospital so then they put him on IV Doxy- all the while on IV we definately seen improvement, however after his PICC was removed, the peditrician would no longer treat him , said he didn't need it, bottom line, yes he did and he took a big fall after that, luckily we found an LLMD who immediately started him on Antibiotics but he again had some allergic reactions and mean while has been diagnosed with Bartonella, so it just has been a very rough road. I truly believe that if he just could have had the IV longer and or continued with oral antibiotics he would have been in much better shape, however the three months without treatment just took a toll on him. That is why it is sooo important to continue treatment until you are completely symptom free, which Dustin was not during the 3 months of no treatment. We wish you the best of luck and please continue to let us know how you are doing. We set up a website for Dustin, please feel free to visit. www.caringbridge.org/visit/dustineckert Posted by salydega (Member # 7309) on :
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
I do plan to continue my treatment this time. I thought that I was better, with the negative test and all. Yes Dr. C is a great Dr., I just have to keep on going. (it gets expensive)![[Wink]](wink.gif)
I am sooooooo sorry to hear your son has this. I can completely sympothize with him though. The headaches are constant, daily. ![[hi]](graemlins/hi.gif)