posted
I've nkt had it bad for a couple mos and bam, back twice in a day. This type of pain makes me want to do bad things to myself. And man I feel like I've tried everything. Nothing happened that I know of. As usual it seems random. What has worked for you guys? I'm so so scared.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I'm not sure if you mean peripheral neuropathy pain, such as in your feet and your hands, or in your legs.
But a word to the wise from my awful experience: if you have had it much, or do have it much, IMO you should go back on treatment ASAP, and stay on it to prevent it worsening.
I have been knocked off treatment countless times due to all kinds of problems, losing my doctor umpteen times, blood numbers worsening badly, getting breast cancer, getting overwhelmed. Oh, and the pandemic didn't help.
As a result, the peripheral neuropathy has devastated the nerves in my feet, legs, hands, mouth (yes, lips and in my mouth) to the point that the pain is completely unbearable. And I can barely stand and walk. So don't let that happen to you!
I can't believe that I let it get this bad. Oh, also I was getting IVIG, but our insurance company changed to Cigna, and they required an EMG, and just when I couldn't reach my long-standing Lyme neurologist. He stopped responding for years!
He had health problems, I think was the reason. And then the pandemic, so he wasn't in the office, so no one answered the phone or mail.
So I used to have an IV nurse, but that stopped at the end of 2019. So now it's all on me to figure out what IV supplies and meds that I need, to pay for them, and to access my own port (put a new needle in under sterile conditions).
And I doubt I'll ever get IVIG again.
So, please do whatever is necessary to prevent the further destruction of your nerves. Once they're gone, the pain is beyond any other pain one has ever had! And good pain control . . the US doesn't want patients like myself to have low-level opioids to make life worth living.
People like me often commit suicide. I'm not going to do that, but I certainly understand it.
Posts: 3792 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, and, no, I don't have diabetes! It's from the Lyme.
Posts: 3792 | From around | Registered: Mar 2008
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posted
It's not sane exactly. I had a neurologist say I dont have neuropathy. Bc mine is sporadic and stabbing. In toes But also get otger sensations... Needle feelings, splinter feelings, electrical jolts, electricity zings, allodynia, burning, any sensation you can think of. I'm not diabetic either. Lyme Dr thinks it's bart. I've thought of cutting off my toe but was told phantom pain could be bad. Dealing w this since 2016,lyme since 1989, it's thought. Dr recd spero pain clinic in IL... Surely there are ppl that deal with nerve rekated pain, that are not in msm!
I'm so sorry dear. I'm here to talk. If I'm able.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Are you on treatment for TBDs?? It sounds like, you aren't. IMHO you should be. Otherwise, the damage to your peripheral nervous system will just continue.
Those pains are signs that the nerves are being damaged. And once damaged, the pain is with you for life---unless you can turn it around soon enough with treatment.
And that pain, as you have already experienced, is agonizing. There are not a lot of meds to treat the pain, and the things used have tons of side=effects.
Don't make the inadvertent mistakes I have made. Get back on treatment pronto to prevent it getting worse.
And, no, amputation does not help and is not the answer!
Please, don't get yourself in the agonizing mess I'm in.
Your doctor may be right about Bartonella, although, I think it's both---not to mention the other pathogens.
Posts: 3792 | From around | Registered: Mar 2008
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posted
Oh yes. Treating bart, bab and borr. I'm also going to retest lyme and test for the cos. I've never had cos tested. Only went on symptoms.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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