posted
I recently had a rush trip in an ambulance due to a high fever and incredibly painful neuropathy over my whole body. I screamed if anyone touched me. It took a lot of morphine to help me.Now at last I am home, but left with painful neuropathy in both hands and swollen knees that keep me barely able to walk. Years ago I had a similar episode. I was in the hospital then for 6 weeks with septicemia. My Herx was unbelievable. No one had any idea that I had Lyme disease at that time. When I got home my feet reacted the same way that my hands react now. They were too painful to touch. Gradually the pain reduced but I am still left with numb feet. I am very concerned that my hands will get the same fate. I am a pianist and an artist so you can imagine how worried I am.
One good thing I learned through all of this, is that Elavil is a pain medicine for nerve pain. I am still on heavy pain medicine but the Elavil with it makes a big difference. Some of you might not know this.
I have been battling Babesiaa for over a year. So my Lyme treatment was suspended. I am on IV Rocephin at home for the infection. I am hoping it will help treat my Lyme symptoms too as it did before I stopped it. My LLMD said I must get rid of Babesia first. He is not pleased that I am on Rocephan.
Why does the systemic infection cause massive neuropathy and flare-ups of Lyme disease? Am I more susceptible to these infections? Has anyone else experienced a similar episode?
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
Thanks, Lymetoo. I have not been told I have CRPS. The symptoms seem like mine. I'll ask the neurologist I'm seeing tomorrow. I was on Mepron/Zith for a year. Now I'm on Alinia/Biaxin. Is that the usual treatment protocol for Babesia? Thanks for your helpful input!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
how long it takes to eradicate babesia is completely unique to the individual. some can wipe it out in 2 months some take 2 years. duncani is particularly tough.
mepron (or malarone), artemisinin, cryptolepis should be taken with 2 abx for as long as it takes for your liver and spleen to not be swollen.
alinia will NOT eradicate babesia on its own its primarily used for wide coverage of parasites (much better than flagyl/tinidazole). yes it does hit babesia but will only do minimal damage
Posts: 21 | From NJ | Registered: Oct 2017
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hi farraday
I experienced a very similar and super scary episode such as yours.
I too was in ER last September '16 before my diagnosis of Lyme and bartonella. I was so sick. Then extreme pins and needles, that were confined only in my feet, moved up my legs to my waist. One morning, in extreme pain, I was paralized from waist down.
Of coarse I told them I thought I had Lyme. Of coarse the Lyme test came back negative.
They hooked me up to IV, gave me pain meds. Released me with script for Xanax,told me to follow up with my neurologist. Diagnosised me with transverse mylagia.
If you read the acticle,it explains this condition can be caused by Lyme, infections, viruses, ect.ect..
This might be what you are experiencing. I'm much better but still have flares for some unknown reason. Hope this helps.
Posts: 2977 | From Florida | Registered: Nov 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey farraday,
Good to see you!
Just tossing this out for thought and because extremely painful neuropathy has been one of my symptoms too for many years on and off.
Have you considered Bartonella might be the cause?
If so, a Bart treatment might be helpful?
Hope you don't have more of that nasty stuff anytime soon!!!
posted
Bart is responsible for my neuropathy. Although, mine wasn't ever painful really, just tingly and numb.
I'm so so sorry. I hope your IV Roc. will help also.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Yes, that sounds EXACTLY like Complex Regional Pain Syndrome (CRPS), used to be called Reflex Sympathetic Dystrophy (RSD). I have it, unfortunately.
It is caused by Lyme and Bartonella, unbeknownst to anyone but Lyme patients and LLMDs.
You should see a Pain Management doctor/Anesthesiologist, but only after ascertaining that they are experienced in treating CRPS, and that they do Sympathetic Nerve Blocks. And checking both with local Lyme groups and online that they are good.
You need to get a series of Sympatyhetic Nerve Blocks ASAP to head this off at the pass. It is only beaten back by quick treatment, early on. You DO NOT want to be stuck with this here on out, because it wasn't diagnosed and treated soon enough. I wasn't, and so many others. It's from hell.
You also need to be on comprehensive treatment for the Lyme & Bartonella, as well as the Babesia. That will beat it back long-term.
I hate to say it, but it sounds like you need a better LLMD. Why does he think that you can only treat one infection at a time when you clearly have at least 3?? And it sounds like the treatment isn't sufficient for what you've got.
Also, you will need physical therapy to help beat it back. But first find a good Pain Management guy/gal and get the nerve blocks. But don't wait too long for PT, though.
You need all of the above to beat this beast. I know, it's a lot, but it's what it takes. They don't call this "the suicide disease" for nothing! The CRPS, that is.
One other thing: Do NOT let them tell you that you don't have this just because you don't have EVERY symptom! It's not necessary to have every single one. If you can't get it acknowledged and treated with nerve blocks promptly, move on to the next Pain Management doctor.
Not catching it in time ensures that you would be stuck with enduring this horrific and progressive systemic disease from here on out. Don't allow that. I know, it takes nerves of steel to make sure that you get what you need. Get your husband, or whoever, to help you.
If I could save one person from this . . .
One other thing: Medical cannabis, including both high CBD kind, but also kinds with THC, help with the pain. Also gabapenin and Lyrica, but, of course, they have all kinds of side-effects.
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
TC,
We're both in this awful club!
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
farraday, what's happening with you now??
Posts: 3771 | From around | Registered: Mar 2008
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