lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I developed meningitis again. This is the 6th time. Thank God my new NP quickly got me a PICC and my first infusion yesterday. I'm so grateful I found her because my LLMD told me to never ask him for IV help again.
Doing a bit better but very weepy today.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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lymeladyinNY
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It's scary to ALWAYS have the specter of meningitis in my life. It makes me feel hopeless.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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momindeep
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Member # 7618
posted
Lymelady...you've had a hard row to hoe...I am sorry for all your troubles. Things will work out...will be thinking about you.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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lymeladyinNY
Frequent Contributor (1K+ posts)
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posted
Thank you. Unfortunately my special-needs son just attacked me. He is very strong and thinks he's playing. My husband is taking him back to his care provider tonight.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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sometimesdilly
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posted
((((LLNY))))
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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lymelady - I'm so sorry to hear you have meningitis again.
Please don't feel hopeless - our hope is sometimes all we have to keep us going and the only thing we alone can control.
It's pretty understandable that you are weepy. I've only had meningitis once, and it was such a horrible experience that I can't imagine going through it six times! I'm so glad your NP is on top of things.
Stay strong. I'll be thinking of you.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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posted
Hubby has never actually had meningitis thankfully, but he did have one supposed lyme literate neurologist tell him that a person could only get lyme meningitis once. Of course that neuro doesn't know nearly as much as he thinks he does.
Are you on rocephin or a combo of meds? I really think you need to be on multiple IV's and continue with them for 3 - 6 months. Rocephin and zithromax really made a big difference for hubby. Rocephin for 7 months and the zith for 4 months. He also took tindamax while on those IV's. His tremors and myoclonus and dystonia have all been gone for the most part for 6 months now since stopping those meds.
Vancomycin would be another good choice, but much more expensive.
Of course now hubby has new symptoms which drive him crazy too -- daily low grade fevers for over 4 months now. His rocky mountain spotted fever test results have been somewhat confusing. Still on aggressive treatment for babs -- seems to be bacteriostatic only -- not bacteriocidal. Neuro symptoms started coming back within 3 or 4 days of switching babs med protocol.
Please have your doc evaluate your bart and babs status -- in my opinion either one of those coinfections could cause meningitis and not just the lyme.
Hang in there.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi Bea, my NP is a very sweet lady who readily followed the protocol my LLMD reluctantly gave to my former primary care doctor last fall. It was earlier this summer that my LLMD told me not to ask him again, but I knew I would go into a meningitis crisis again due to undertreatment.
I told my new NP my dilemma as soon as I returned home from my LLMD appt. and she told me to come in as soon as I felt I needed help and she would hook me up. She is a woman of her word, thank God!
She is still learning about Lyme but is eager to help. She didn't prescribe anything beyond rocephin, though, so I've continued with much of the protocols set forth by my LLMD, as well.
This includes continuing Mepron/zithromax, flagyl 3 days a week, and A-Bart at very low doses. A-Bart has helped me tremendously with bartonella heart symptoms, and I'm not troubled by the severe muscle spasm and myoclonus problems like I used to be.
I hope to stay on the IV for quite some time, but I'm not holding my breath. Soon my NP will be working under a different physician. I don't know how friendly he will be or what he will allow my NP to do for me.
For this reason I'm on Dr. J.'s waiting list. I may just keep my current LLMD, work with Dr. J. for IV purposes, and hope my NP can continue to help me in a pinch. This is what I'm hoping for - but we shall see what shall happen!
I'm so sorry for your hubby's continued issues. It sounds like our similarities are disappearing as we both continue on this long path. Remind him that we WILL one day soar! My prayers to you both.
- Julie (Lymelady)
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
PS - I, too, have trouble with bacteriostatic rather than bactericidal effects of babs treatment. I feel I will be stuck with the yellow liquid the rest of my life! It is frightening to contemplate.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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