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» LymeNet Flash » Questions and Discussion » Medical Questions » Why Am I NOT on IV?

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Author Topic: Why Am I NOT on IV?
Visual Afterimage Man
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This is obviously a question for my doctor, but I'm interested in hearing your opinion.

I've been on orals for 15 months. I've treated Babs, Bart and Lyme.

I just had a 2nd degree heart block show up on an EKG.
I have terrible CNS issues. I can't see very well, afterimages are plaging me.
I'm depressed, I have no memory and I can't figure out what day it is half the time. Or I can't remember what I did yesterday.

So.. with the Cardiac evidence, wouldn't you think it's time to move over to IV? Orals don't seem to be doing the trick.

Even the stupid IDSA recommends IV therapy for late stage Lyme with CNS or Cardio involvement.

I'm wondering if moving over to IV is going to be my saving grace. I'm in pure hell these days.

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26 months of treatment. And counting.......

Posts: 298 | From Northeast Kansas | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
CaliforniaLyme
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I would guess because you have a good LLMD!!!
IV has the risk of death and no good doctor puts someone on right away until they have genuinely tried a range of orals or IM unless the person is ultra neuro!!!
Lyme recovery takes time, too long sometimes!!!
I would ask your doctor about IM, it can be just as poewrful as IV for some people but SO much safer!!!
Sincerely,
Sarah

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Visual Afterimage Man
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IM???

--------------------
26 months of treatment. And counting.......

Posts: 298 | From Northeast Kansas | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Visual Afterimage Man
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Did I mention that the big turn downwards for me is probably due to restarting Doxy 400 mg/day?

My CD57 crashed to the floor so the LLMD moved me back to Old school lyme treatment. Herxy? Possibly. Sucks.

--------------------
26 months of treatment. And counting.......

Posts: 298 | From Northeast Kansas | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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My LLMD was talking about starting me on IV when a year of orals didn't clear the CNS symptoms. Then I had a miraculous response to Levaquin, all symptoms cleared, and instead of getting IV this Jan. I'm being weaned off meds.

So, on the one hand, your LLMD is right trying everything. On the other, a year is a long time.

Be doing everything on your end you can .... eat right, drink lots of water, exercise as you are able, detox .....

Sounds like you're herxing on the doxy.

IM is something like bicillin injections ... shots. [Smile] I'd try it before IV

--------------------
sixgoofykids.blogspot.com

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Visual Afterimage Man
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I was on levaquin for 30 days. I didn't herx on it at all. I noticed some neuropathy from the meds though.. so be careful with it. It subsided about 14 days after stopping levaquin.

Yeah.. I'm probably herxing on the doxy..
Doc says that by summer time I should be feeling MUCH better. I guess I should put faith in his prediction. It's hard to when you feel horrible and want to flip a switch and get your head screwed back on straight.

He's put me back on Lexapro to get me through this long winter. Man, I'm ready for that to start working too. Its only been 10 days.. I know it takes and SSRI some time to start working.

Also the news of the heart block has got me upset. I have read that heart block can cause lightheadness. Sheesh... so is my brain fog due to Lyme or Heart block? Growl!

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26 months of treatment. And counting.......

Posts: 298 | From Northeast Kansas | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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I was on Levaquin for 12 weeks, but I'm off it now .... I'm getting weaned off meds.

If you're that miserable on doxy, it must be working, hang in there! That's how I was on Levaquin for six weeks, then progressively got better until all symptoms resolved.

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sixgoofykids.blogspot.com

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CaliforniaLyme
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Visual, IM is Intra-Muscular- Bicillin usually although IM Rocephin exists!!! You get one shot in the bottom once a week so it spares your guts, too!! It is WAY WAY safer than IV!!!

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
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 -
hugs to you!! [Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

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sfcharm
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I too spent one year on orals before starting Rocephin IV seven months ago. It definitely got me to 90% of where I was pre lyme. I also spent six full months of bicillin LA shots at a high dose of 4.8 million units a week.

I would recommend either or both. For me I belelive I needed both. As Sarah mentions bicillin is less invasive as the IV. However after almost seven months on IV I can say I've never had a problem with an infection in my line.

In fact I found the IV once a day easier than remembering to take a ton of pills every day. I did have my gallbladder out Jan 3rd but I was warned of this going into it so I knew it was always a possibility.

The IV is for the more seriously ill Lymie but it made a world of difference for me at around the sixth month. My hopes are to make it to a year with Rocephin.

Barb

Posts: 281 | From san francisco | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
adamm
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How effective is IM compared to IV?

And will will either of the treatments help even if you still have
co-infections?

[ 31. January 2008, 03:57 PM: Message edited by: adamm ]

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Visual Afterimage Man
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Awesome.. I just had a panic attack.

Obviously my mental state isn't where it should be. Wonder if it's the stupid Lexapro.

--------------------
26 months of treatment. And counting.......

Posts: 298 | From Northeast Kansas | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Michelle M
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Mornin Visual.

I'm so sorry things aren't better for you at this stage.

Don't give up on the Lexapro. It's mighty early yet.

Sounds like the doxy is doing a number on you. Wasn't long ago the Flagyl was doing a number on you. You'd think that was as bad as it could get!

I know you're pushing through ALL of this and continuing to work.

I wish you were able to take at least a short term disability leave from work. And give yourself time to REST, something you haven't had so far.

If I get to vote, I vote for IV or IM Bicillin. I don't know of any studies that compare them; certainly IM is safer. However, I'd think that your brain symptoms warrant it. Please discuss it with your LLMD as a possible next move. It really has helped so many people turn the corner.

Thinking of you and sending a hug,

Michelle

Posts: 3193 | From Northern California | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Visual Afterimage Man
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Thanks for the well wishes Michelle.

Could be the doxy doing this and not the Lexapro. It could be because I'm worried about my appt with the Cardiologist on Monday for my heart block issues. It's all to confusing.

I'm supposed to start another 10 day round of Flagyl 1500 mg/day this weekend. I'm not sure if thats a good idea while I'm feeling this bad on the doxy.

Any advice?

Honestly, I must work. I'm dealing with a lot of psych issues which seem to bother me the most. If I'm working, then I'm forced to focus on something else. If I'm at home.. I sit around and feel anxious about my health.

As a matter of fact, I'm sort of the opposite of anxious depressed people. I HATE being alone. If I'm in a group setting, I feel pretty good, and I'm active in the conversation. If I'm alone, then I start to dwell on my heatlh and start to get extremely anxious.

Maybe the Lexapro will help with this being alone issue. Who knows. I'm also about two panic attacks away from calling a psych, who I'm sure will tell me that there's no such thing as Lyme in KS.

It's all so darn abstract! What I wouldn't give to get 1 solid day of feeling like I did prior to 2005.

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26 months of treatment. And counting.......

Posts: 298 | From Northeast Kansas | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
just don
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For ME,,,the Lexapro made matters twice as bad,than fix anything,,,so I didnt take THAT any more!!

One reason you may still be on orals vs IV is,,,it MAY trip your insurance into denying ANY further treatment,,,so there IS a risk!! THAT would be a HUGE disadvantage for YOU!!

And you cant call and ask such a question either,,,it just happens as it happens and bang, your whole floor drops from under you!!

I would BESURE to revisit your having co-infections BEFORE going further if you are unresponsive. Or little responsive!!

Bigger question,,,are you seeing a real deal LLMD?? (CAnt post names here but maybe last initial,, and or general state of practice area)

Sometimes we just DONT progress,,,no matter what we do--like --just don--

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just don

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Visual Afterimage Man
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Oh God, don't tell me that.

I'm going to be 30 this April. And there's no way I could live another 30 years in this type of condition.

What about drinking a bottle of 'drain-o'? That should kill the ketes.

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26 months of treatment. And counting.......

Posts: 298 | From Northeast Kansas | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
tosho
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quote:
Originally posted by CaliforniaLyme:
I would guess because you have a good LLMD!!!
IV has the risk of death and no good doctor puts someone on right away until they have genuinely tried a range of orals or IM unless the person is ultra neuro!!!

Sarah

Why death? Do you mean possibility of sepsis?

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[Bb WB igm+] [B.henselae PCR+] [Chlamydia pneum.igm+igg+] [EBV igm-igg+]

Posts: 844 | From Poland | Registered: Sep 2006  |  IP: Logged | Report this post to a Moderator
tosho
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Up for Sarah.

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[Bb WB igm+] [B.henselae PCR+] [Chlamydia pneum.igm+igg+] [EBV igm-igg+]

Posts: 844 | From Poland | Registered: Sep 2006  |  IP: Logged | Report this post to a Moderator
   

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