posted
I've been doing IM Cefatriaxone for 8 weeks now, and the injections are getting harder and harder to do because of hard nodules at the injection sites. Can't do IV simply because I can't go anywhere to start a line and they won't start it at my house (I'm bedbound).
I keep hearing stories of people relapsing after stopping Rocephin, and this really scares me as it has helped me regain my ability to breath, stopped some of my twitches, and helped with extreme almost paralyzing muscle weakness (I do think I have diaphragm paralysis, hence the not breathing).
So what are the different protocols on this? I have heard 3 months is the minimum, but is that accurate? At what point is a relapse not as much of a risk? In a few months I will have been treating Lyme for 2 yrs. total. I was doing Bicillin injections for about 9 months before starting Cefatriaxone, and they seemed to be hitting some neuro Lyme symptoms as well.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Dear one - I don't know the answer to your questions. I just want you to know I'll pray for your recovery to good health. -p
Posts: 641 | From So. CA | Registered: May 2008
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posted
My LLMD said to be optimistic and try for 5-6 months of IV. But the way it's going, I'll need more. It's helped with the neuro symptoms a little but fatigue is still terrible.
I'm sorry you can't go anywhere to get the IV because it might be just what you need. How difficult. My heart goes out to you.
Posts: 236 | From Washington | Registered: Jul 2008
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posted
Thank you both for the kindness!!
Posts: 929 | From Massachusetts | Registered: Oct 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
LymeCFIDS, I can't answer all of your questions but I'll tell you my experience with IM ceftriaxone. I was on it for about 4 months - shots every other day. Had a huge reduction in pain but greatly increased fatigue, depression and immune system dysfunction.
I had to stop due to the large, hard nodules at the injection site. They got so bad that they were waking me up at night. They became very swollen, red and painful. I didn't know shots could hurt that much.
I'm doing NAET for the local reaction. My doc said that IV is more effective but personally I'd rather do the shots. I can't imagine taking higher doses than I was on with the shots. I'm getting ready for IV sometime in Aug/Sept.
I'm not on anything for lyme at the moment since we are treating a fungal infection and I don't want to make that worse. I've been off IM ceftriaxone since mid January and the pain is still so much better. It seems like some of my neuropathy symptoms are coming back but everything else is holding much better than I thought it would given that I'm not on anything to treat lyme right now.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Do you use lidocaine with your injections? Does that help with the nodules, or no?
I have no experience with this, but was considering it.
I'm so sorry about this. Could you have someone basically carry you to the doctor to get the line put in?
I know it would be a very rough day and seems impossible, but think of the payoff. Even if you had to hire someone to lift you up, put you in a van, and carry you in. Could you do that?
Posts: 453 | From TX | Registered: Aug 2008
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posted
No I'm too weak to make the trip to the hospital (20 miles) which is where I would have to go even if someone carried/drove me.
I do use lidocaine. In fact, I also tried sterile water for injection (the other option to reconsitute this stuff) and the pain was so excruciating I simply could not do it. The lidocaine does help the pain but the shots are stil painful, and it doesn't stop the nodules.
Terry that is good to hear your progress is holding steady!! That gives me hope. Did your fatigue/immune dysfunction/depression improve when you stopped the shots?
Posts: 929 | From Massachusetts | Registered: Oct 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
LymeCFID - I used lidocaine too and also tried the sterile water. OMG!!!! The sterile water was very painful!! I injected just the lidocaine to see if maybe I was having a reaction to it but no reaction. It was the ceftriaxone.
The fatigue is just now starting to improve since I started acetyl glutathione. I did also get some relief with noni juice but still not back to where I was. I do have to say though that after a few days on the acetyl glutathione I noticed what appears to be a major difference. Still too early to tell the final outcome though.
I've also started Low Dose Naltrexone a few days ago at 1.5 mg but will move up tonight and see what happens.
The immune system is still depressed. I have a fungal infection on my tongue from tindamax and I'm still trying to get over the mother of all flu's that I got almost 2 weeks ago.
Depression is much better.
I hope you can continue the IM ceftriaxone. Even if you continue to have the lumps, you may still be able to take a break now and then and keep using it.
Wishing the best for you.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Yes, the sterile water was BRUTAL! Wow, I have a pretty high pain threshold but I was whimpering like a baby and then it burned afterward for hours and I not seem to numb the pain with ice.
There is a homeopathic lozenge called pleo nig for aspergillus that my LLMD gives out for the black tongue thing -- maybe another thing to add to your arsenal.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks LymeCFIDS, I'll check out that product. The infection doesn't look like an aspergillus infection but maybe that remedy works for it anyway?
I forgot to mention that you might be able to break up the big lumps from the shots with a handheld electric massager. It did help break mine up but I had to wait for the soreness to subside before I could use it.
Apparently we aren't the only ones who can't tolerate the saline solution with ceftriaxone. My doctor said it would be very painful and he was right.
I'll be interested to hear how you do with the shots. I'll let you know once I'm through NAET therapy if the shots are more tolerable. That is if my doctor will allow me to go back on them.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Thanks Terry, good idea about the massager -- I will try that.
And please do keep me posted on the NAET therapy and what happens with the shots.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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