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Rocephin and cognitive/psychiatric symptoms

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Old 08-16-2008, 07:13 PM   #1
Join Date: Aug 2008
Location: NJ
Posts: 4
NJLyme HB User
Rocephin and cognitive/psychiatric symptoms

Hi Everyone,

This is my very first post - forgive me if I'm asking something that has been asked before, but none of the threads that I found 'fit' my particular situation.

My history is below, but I'll start with my question to save a bit of time! I guess the root of my question is...did anyone have symptoms of social anxiety, depression, brain fog, low motivation (I love to 'feel like' having a hobby of some sort), memory, flat personality (I'm kind of in neutral - I'll have lows, but I don't really get excited about much of anything) that improved when they were on Rocephin?

My story is...about 10 years ago I went to my family physician with headaches, anxiety, and a tightness in my chest. He was concerned that I might have MS so he sent me for a spinal tap. The test was negative, so he sent me away with a rx for paxil which I was on for about 8 years or so (I eventually went off it becuase it didn't seem to be helping at all). My symptoms never really went away, but I thought that I was just depressed. Over the years, I've been noticing additional symptoms, mostly cognitive and psychiatic. Sometimes I honestly can't think of the proper response when someone says hello to me. I usually limit conversations to things surrounding my opinion because I can't remember simple facts for the life of me.

Almost 11 months ago, I had a healthy baby boy but became severly depressed and mentally foggy (I couldn't figure out how to pay the bills, etc.) immediatly after. My doctor treated me for post partum depression and started me on Zoloft, but I always felt that there was more to it than that.
Eventually I began to suspect Lyme and found a LLMD in NJ (thank goodness for her - she was the first in 4 doctors to listen to me and not tell me that it's PPD that I'm experiencing). Igenex ran a WB in May 08 and my IgM and IGG results were both positive.

It's to the point where I feel like I can't think straight, I really don't enjoy being around people since I can't think of a thing to say and I'm withdrawing from my friends/family (forget about joining a new moms group!).

I have other symptoms too, including chest pain, tingling in my spine, ringing in my ears, eye twitches, headaches and joint pain. I can actually live with that stuff (although I would prefer not to!), but cognitive and psych stuff is what is really driving me crazy (for lack of a better word). I get so frusterated because I'll read something and then not remember how to apply it. For example, I'll read something on baby care and then when the situation arises I can't remember what I read even a few minutes before. Also, I seem to be unable to read and follow directions. It's endlessly frusterating.

I have been on 3 different oral meds and several supplements and my doctor wants to start me on Rocephin, but BCBS just denied coverage.

I'm willing to fight for tx if I need to, but I want to have some idea if the Rocephin will help first. Any successes? Also, does anyone have a template of letter to send to insurance appealing denial based on medical necessity? My dr sent an inital letter, but I'm not sure how to proceed now. I talked to my company and they will cover the cost of Rocephin once I've exhausted my appeals with BCBS, but I'm not sure what my next step should be right now.


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Old 08-17-2008, 06:58 PM   #2
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Join Date: Jan 2005
Location: NJ
Posts: 1,944
6Blues HB User6Blues HB User6Blues HB User
Re: Rocephin and cognitive/psychiatric symptoms

Hi NJLyme and welcome.

I suffered from major neurological problems with this disease. I had trouble concentrating, I had trouble remembering simple words, I could not respond when someone spoke to me and my short term memory was a joke.

If I felt "good" one day, I would drive to the grocery store, turn off my truck, put the keys in my pocket, gather my list (oh God did I need lists - but I usually forgot them at home), feel my pocket to make sure the keys were there, get out of my truck and stand up, pat my pocket again to make sure my keys were there and then shut the truck door, walk towards the store and then .... WHERE THE HECK WERE MY KEYS?????? .... brief panic until I remembered they were in my pocket.

sheesh - scary way to live.

I had to keep a full-time job (still don't know how I managed to do that!!) and I would sit on the sofa with my laptop and work, TV on low. If one of my kids walked into the room and spoke to me (even just "Hi Mom."), my brain felt as if 2 trains had just crashed and I would lose all awareness of what I was doing or what they said. I would just stare at them with tears in my eyes.

I had such mental fatigue, it felt as if my brain wasn't firing; not just firing wrongly, not firing at all.

I had moments of unprovolked rage. I would cry watching a muffler commercial. I had thoughts of suicide. I felt as if I was stuffed inside a giant marshmallow - everything looked hazy and far away. My mind was more than foggy - it was like a slow cold ocean current down in the dark.

I missed my brain so much. I missed having thoughts flying through there. I hated being slow, unresponsivess and forgetfull.

I tested my IQ because I seriously thought I was losing my mind.

I also had physical symtoms: vomitting, rashes, pain, complete loss of balance, vision problems, daily fevers, hair loss, bottom half of my face numb, weight gain, etc.

If I did have a "good" day and I went to the store, I was afraid of people looking at me walking funny.

I don't know how, but here I am, 3 1/2 years into treatment and I can think again! I can multi-task, I can scold my kids, I can remember garbage day, which way to drive to get to work, and I actaully started cleaning my room!! Major miracle for me.

I was so very very sick. I worked from home, lived on my sofa because it was too much effort to struggle to my bedroom each night. On bad days I could not even shuffle to the sink to brush my teeth.

Once, my daughter made me a bowl of soup. She walked over to the saofa, handed it to me and my eye-hand coordination didn't work and the soup ended up in my lap. Instead of jumpin up and reacting like a normal person would do, I just sat there and cried and cried.

I could not do dishes, shower, climb to the second floor of my house, or get my mail from the mailbox everyday.

I taught my kids to how to use my debit card so they could grocery shop while I sat in the truck.

Anyway ... enough about me. I know how bad you feel. I've been there. I know exactly how it feels. I know what is to be so far down in a fog that you feel you'll never get out.

We've all been there. We remember how hard it is to suffer so bad, day after day, week after week, and just keep plodding along.

Hang in there! I was on IV Rocephin and IV Zithromax for a year.

The thing that helped the most i my recovery was to see a Lyme Literate Medical Doctor (LLMD). I see Dr. E in NJ. Very very good caring doctor.

The 2nd most helpful thing for me was to destroy my co-infection first. I have Bartonella and Lyme. I was on Levaquin, an oral antibiotic for Bartonella, for nine months and TAA DAAA! ... my brain came back. I could talk fast and think fast again - what a miracle.

The IV Rocephin was agressive antibiotic treatment, but without taking care of my co-infection first, the Lyme wasn't going to budge.

I tested positive for Lyme but negative for co-infections. On a hunch, my LLMD presrcibed me the Levaquin and almost immediately I began to Herx badly. But nine months later - yee haw - I had my mind back.

Hang in there. Educate yourself as much as possible. Try to learn about detoxing, eating healthy, alternative therapies and drugs. Try to arm yourself with knowledge.

This disease did not kill me. I sure felt like it was killing me, but it didn't.

I am much better now, so you keep fighting and treating and taking meds and get that IV and fight with everything you've got.

This board is great - we've all been there. Now here I am running errands - never thought I'd be doing that again!

Peace and health to you,

Old 08-18-2008, 08:01 AM   #3
Join Date: Aug 2008
Location: NJ
Posts: 4
NJLyme HB User
Re: Rocephin and cognitive/psychiatric symptoms

How can I thank you for such a thorough and caring reply? I am NOT crazy and I'm NOT alone - I'll keep repeating that. I know what you mean about lists - they seem like such a simple solution, but you need to have the list with you to make the system work!

I'm working a 32 hour week and not sure how I'm doing it either. I'm just in autopilot and hope each day that no one will approach me with a question harder than how I'm doing. It's like my logic and reason are shot and I ask myself why I though I could handle having a baby. There is just so much stress on my marriage right now. I'm super critical all the time and I know that I make my poor husband feel that he can't quite to anything right. I just don't know how to change.

I am also a patient of Dr. E. I'm currently taking Augmentim (sp?), alough I tested neg for Bart, she added rifampin. My symptoms seem to be getting a bit worse and I've noticed a few new ones, so I'm hopeful that it's working. I'll ask her about Levaquin though. Did you do 9 mo of Levaquin and then start IV tx? Did insurance pay for the IV tx?

Isn't it terribe that when you are mentally at your weakest you need to figure out insurance stuff, diet stuff (I can barely follow a recipe anymore), etc.? I'm really not sure what to do to start my appeal, but maybe Dr. E can help with that. I'll talk to her about it when I see her next week.

I just feel so lost within my head. I don't even speak very much anymore because I just feel so blank and feel that I'm saying the most jumbled things when I do speak. I'm actually afraid that my 11 mo old won't speak well since I'm not the best example right now! Over the years it's actually turned me into a bit of a hermit. I get such anxiety at making small talk that we don't entertain very often. Now that I'm a mom and don't know many other moms my social anxiety issues are really bothering me.

I've tried to keep myself from thinking silly thoughts like that maybe this is how I am - I'm just dumb. Then I think that if I was just normally mentally inept my current mental state wouldn't bother me so much!

OK, that was stream of conciousness post - I just typed whatever was on my mind, but it sure feels good to get it out. Thanks again!

Old 08-24-2008, 10:22 AM   #4
Join Date: Aug 2008
Location: NJ
Posts: 4
NJLyme HB User
Re: Rocephin and cognitive/psychiatric symptoms

Has anyone else tried Rocephin and seen improvement in cognitive/psychiatric conditions? If so, what was the dose/length of tx and what improvements did you see? TIA.

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