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» LymeNet Flash » Questions and Discussion » Medical Questions » checking in with my current progress.

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Author Topic: checking in with my current progress.
LymeNet Contributor
Member # 7088

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I haven't posted in a while. I had a bad spell with herxing after starting IV rocephin in April. I got a central line put in my chest, which for the first month or so caused some muscle spasms around the area and up my neck. Which sucked. But that's all better now and the line is doing pretty well.

I've continued to improve on the rocephin after 2 months of non-stop herxing. I'm still having severe monthly herxing.

I'm also taking Zithromax (1g), hydroxychlorquine (90days on, 30 days off), artiminsin, Urasidol, sporonox (2xweek). Also I had been taking probenecid but have stopped it.

Recently we added Septra DS for co-infections. And I saw almost immediate improvement. Which I suppose could be unrealted but 4 days later things still seem improved. My muscle pain is gone almost totally. Joint aches remain.

So now I'm down to fatigue, cognitive function, and migraines. Also I need to no longer herx monthly before we go to a maintanance dose.
I started treatment back in Feb 05 on just oral meds. So I'm halfway to the mean duration of treatment of 3 years.

Blue Cross and the independant medical reviewer (infectious disease, paid by BC) denied paying for treatment. It is their opinion that I don't have lyme, as parts of my file mysteriously didn't make it to the independant medical reviewer. And just in case my positive tests showed back up, he added that in anycase there's no evidence to prove it helps, despite the 63 pages of peer reviewed articles I sent. I guess scientific method was a bit too complex for him/her. I'm livid. But until I sue them there is no other recourse for me.

So I'm not done yet but I am definately making improvements. I haven't figured out what is triggering the migraines. Definately herxing (and also the triggers for normal people-low blood surgar, weather changes etc) but it seems like I'm also getting them at other random times.

Posts: 207 | From san francisco, ca | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
deb obrien
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Member # 5239

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hi burn - congrats on feeling better....i started rocephin this past may and dr s added zith 3 weeks ago - i can't believe that you can hadle i gram of zith daily....i'm now up to 250 mg daily, the second 250 just leaves me with terrible herxes...altho before i started the rocephin i did 500 mg zith and 500 mg flagyl daily with no problem!!!!

i do most of my infusions at the local hospital as medicare covers all of that.....would your insurance be more amenable to paying for outpatient iv's?? has your doc written your insurance co how you definitely have a clinical case of lyme and are responding to it??

good luck,
deb - across the bay in richmond

Posts: 122 | From richmond, ca, usa | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
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Hi there fellow bay-area-residents!(I'm in Oakland)--

So sorry to hear about the insurance denials --that stuff (the missing files, the mis-information) always gets my blood boiling!

For me, the migraines seem to have been a babesia-related condition. I was waking up with severe migraines *every* day for a long time, and that stopped when I started treating for (seronegative) babesia -- (I asked my LLNP to treat based on symptoms, and she agreed.) I rarely have headaches at all now, except when herxing.

Have you tried migraine meds to help with the head pain? They help me a great deal. The only exception to that is when the head pain is caused by meningitis (which I have had at least 5 times that I know of) -- then nothing at all will touch the pain.

I do hope you continue to improve -- this is a long, potentially very expensive road to travel. but our health is by far the greatest wealth we can have!

"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

Posts: 822 | From California | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
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hi burnbitter --

I'm pretty new here, but for what it's worth I'll share some migraine thoughts. I think I may have contracted Lyme about 4-7 years ago with migraines occuring on or around every period. I thought they were hormonal. They gained in intensity and always lasted three days of varying pain with two sweaty, weak days following.

I was also diagnosed with otoscerosis (softening of the ear bone) and told that it was causing my dizzyness. The migraines are always accompanied with right ear pain. Over three years I lost 35% of my hearing.

I went on the Rocephin IV last April after finally finding a LLMD who was patient and understanding as I wrestled with other abx. Migraines on Rocephin were a killer! Not only did I suffer the usual indignities, but I felt like a pile-driver was going through the top of my head. During these painful episodes, my speech and thinking was really affected too.

I am taking a brief Rocephin break (three weeks) right now and just had a "regular" migraine without the pile-driver effect! Same old pain but no fireworks! Who knew that you could see that as a relief!?!

The good news is that since being on Rocephin, my vision problems and hearing loss have turned around. Both were tested and the hearing has been regained and the eye pressure has dropped. The bad news is that off Rocephin for only 2 weeks and I feel symptoms returning. So, I look forward to the drugs....

Don't know whether any of that info is helpful, but for what it's worth... there 'tis. I'm impressed with all that you are taking and enduring. I wish you the best of luck for continued improvements!


Posts: 508 | From Banks of the Hudson | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator

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