Topic: 10 weeks of IV Rocephin, now off...will I crash?
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I have been having a great deal of difficulty as you many have read with getting a line in place for my IV. I have now reached a crossroads where I am fighting to get a dcotor to order a line for me.
I am so concerned that I am going to crash; abruptly stopping after ten weeks. I am still on four orals. I also have been profoundly fatigued and bedridden the last six weeks or more on Rocephin, so I'm not really sure how I coudl crash any lower.....but still I'm scared.
Any experience or opinions? Today I could not get out of bed, pain has returned all over my body (which was gone!!!) and I was sweaty all day.
My last dose of Rcoephin (sniffle) was Tuesday, so it's been four days without it.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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TerryK
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So sorry this is happening Tracy.
I've been told that if symptoms come back that quickly, it is not lyme but likely a co-infection. I assume I was told this because lyme is slow growing.
As I've mentioned, I was on IM rocephin, not IV yet. I'll get a port in August or Sept. for that. My pain was decreased by 70% on IM and is now coming back after a few months off.
I wish I had some answers for you but other than IM rocephin, I can't think of a way for you to get rocephin until you get your port. They are going to be doing a port, right?
You've probably already done this but if not, I'd contact my LLMD and tell him what is happening and ask for help.
Sorry I can't be more help. I'm sending healing energy your way and hope that this gets resolved quickly.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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Do you have access to a rife machine by any chance?
I've been trying to keep mine at bay with rife, orals and herbs until I see my LLMD later this month.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Tracy9
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No, I don't.
I'm wondering what people think about ten weeks of IV Rocephin overall, I mean if that's all I get, was that decent treatment? Because I was expecting to be on it for about a yesr.
I remembered my LLD said I could substitute it with Ceftin, so I have to get that filled and not forget.
So many questions, my fatiuge is starting to lift and I acutally walked a mile yesterday and was out for about six hours today. I think the IV Rocephin was causing me extreme fatigue, as I've read it can do.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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seekhelp
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Member # 15067
posted
Wow, on IV for an entire year Tracy? That would cost a bundle! I'm glad to hear your fatigue is better though. Your treatment is 2.5x longer than an ID doc would've given for IV.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I was on rocephin for almost 7 months and it didn't do much for me. I too was exhausted on it and noticed a difference when I went off.
I didn't backslide or crash. I started different meds and have remained at the same spot since the rocephin.
I was worried that I would slip back too, but had no choice but to come off.
I'm just worried that because of all my neuro problems that I would need IV. But there's no going back now.
Posts: 86 | From new york | Registered: Jun 2008
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TerryK
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Member # 8552
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Tracy - Glad to hear your fatigue is lifting. Mine is better too still gets pretty severe at times so it is not consistently better.
I think the fact that you had such a dramatic response with your pain level is an indication that it was working. If you can't keep the pain down off rocephin, then in my non-doctor opinion, more treatment would be indicated.
Sarah - sorry to hear that IV rocephin didn't do much for you. If it didn't help, I wouldn't expect you to slide back since you didn't slide forward while using it.
seek - I don't think Tracy is off base at all. I don't concern myself with IDSA protocols and how long they would give IV. They deny the existence of chronic lyme disease so they couldn't possibly know how to treat it.
One poster (californialyme) who used to post here was on it for 7 months before she noticed much improvement. She was on it for a total of 9 months. It brought her to remission.
Tracy - while on IM ceftriaxone, I noticed my fatigue got so much worse too. In addition, I developed a bad case of depression and my immune system seems to be depressed now or maybe it's just lyme coming back. I'm contantly feeling like I"m getting a cold or the flu. I have read that people often note a decrease in CD57 while in treatment so maybe that is what is happening.
I think IV/IM rocephin/ceftriaxone hits the brain infection and some or maybe even most of what we are experiencing is related to die off which would probably affect neurotransmitters. I hope to find some answers or a way to ameloriate some of the nasty side effects before I embark on long term IV.
I'm going to ask my LLMD about low dose naltrexone for the immune system. I found that my vision was a mess while on IM ceftriaxone. Fits in with Dr. S's theory of vision difficulties and biotoxins.
I found some relief of my vision difficulties by using wheat grass pills. Can't guarantee it will help anyone else but my vision got much better after I started the wheat grass.
I'm still really puzzled by the profound fatigue that rocephin/ceftriaxone brings on.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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seekhelp
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posted
I wasn't questioning Tracy's treatment or the success she had at all. I just simply meant worst case scanrio, she had 2.5x more treatment than many. I'm hoping it's enough now and orals may be used. A year of IV Abx would cost a ton and I'm guessing many here don't have the $$$ if insurance doesn't pay.
Many unlucky ones get 1 month or worse (like me) can't even get that one month of IV due to insurers spitting in the face of 'chronic Lyme,'
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TerryK
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Member # 8552
posted
seek wrote: Wow, on IV for an entire year Tracy?
It did seem like you were questioning the length of treatment but I think it's perfectly fine to question. We should all be asking questions.
I know someone who got the full IDSA course of IV and then some. When she developed fibromyalgia they told her she would have to live with it. I think Steere himself told her it was the ill defined "Post Lyme Syndrome".
After 20 years of suffering and becoming almost bedridden she is almost well on orals and treatment for babesia and other infections.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Tracy9
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Member # 7521
posted
Well I had no problem getting insurance to cover it for the ten weeks I was on it. I have experienced just a couple of days of fatigue lifting since I've been off it for a week now, but yesterday Cody said to me:
"Mom, if it means you have to be really really tired for a few months but in the end you'll be better, I think it's best if you stick with it. I think it will be worth it."
I was impressed; I hadn't even discussed this with him. I think he is right.
I called Dr P today and left a voice mail begging him to order me a line. He originally sent me to Dr W, and Dr W asked me to go back to him for the line. Of course in between was Dr L who finally acutally got me on the Rocephin.
So all that stands between me and my IV is a doc to order a line. That's it. Pretty pathetic.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I know a pcp in brockton that may be willing to help you, he is very open-minded. are you near there? Trace
Posts: 65 | From massachussettes | Registered: Mar 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I will gladly drive to Brockton; please email me at [email protected]. I just need someone to order me a line!!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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