CIDP What caused it? List all meds you are taking

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    • #117256
      Ron Brunelle
      Participant

      Though I can’t prove it, I have my suspicions that my CIDP is a result of Lyme antibiotics and/or pain meds. Help my personal research.
      List your meds, even unprescribed
      My meds listed below:

      Vicodin (unprescribed)
      On & off 5 years prior to CIDP diagnosis.

      (Prescribed)
      Doxycycline
      Tetracycline
      Dapsone
      LDN
      Percocet
      Oxycodone
      Rifampin
      Vitamins

    • #117261
      jon swanson
      Participant

      I think its a stretch to include pain meds.

    • #117266
      Ron Brunelle
      Participant

      I’m desperate for an answer.
      Yes, I agree its a really long stretch. No one knows for sure how CIDP occurs. I guess I like to torture myself. I think back to when I started feeling the symptoms and what events took place. Many of the medicines I took are quite damaging. The doctors never warned me of the side & adverse effects of some of these drugs. LDN Low Dose Naltrexone can cause anything from stomach cramps to convolutions, depression or deep vein thrombosis. After a few months of therapy I suffered from a pulmonary embolism. (Blood clot in my lung)
      Long term Opioids use could change your metabolism, lowers your immune system and could cause anything from weight loss to causing a stroke. Maybe I do too much online research.

    • #117267
      harryswope
      Participant

      Hi Ron is there any family history of autoimmune problems ? I have CIDP my twin brother has Crones, my dad had ALS and my sister has Gout. There is no question how I got CIDP you have some genetic history to explore.

    • #117275
      Ron Brunelle
      Participant

      I believe there are different engines that drive an individuals health.
      Genetic
      Diet
      Pollutants-toxins
      Medicine
      Anything that changes your metabolism and/or immune system.
      In my case, my suspicions of the CIDP started with contracting Lyme disease and then the over use of antibiotics.
      Other contributing factors are pain meds which further weakened my immune system.
      This is my isolated story. No one has the same leading conditions, we are all familiar with the outcome.

    • #117286
      Dana
      Participant

      Not sure what caused it but I have a suspicions it could have been an antibiotic (Minocycline) I prescribed ~ 3 years ago by my ophthalmologist. It messed up my gut flora badly though it seemed to clear up after I stopped taking it. I’ve also been on quite a few supplements over the years such as magnesium and vitimins.

      The only other thing that comes to mind is some traveling around the world, but it was so long ago I doubt it. Still no telling what I could have picked up in nasty places like India or how long it could stay dormant.

    • #117372
      terri232
      Participant

      So – I am POSITIVE that either the NJ Swine Flu vaccine OR the pneumonia vaccine or the combination of the two resulted in my diagnosis of CIDP. I received them both on the same day and soon after that started with pins and needles in one leg – that was the beginning.

    • #117393
      Lynners
      Participant

      For what it’s worth, I underwent treatment for Stage II, Triple Negative Breast cancer 5-2016 – 10-4-2016. I then did 30 rounds of radiation. So early stage, no metastasis. I was doing great until I took a fall in Jan, 2018, then another fall 3 weeks later. No warning, no pain, just fell down. During chemo, I felt a distinct weakness in my right leg. It was difficult to go up stairs. I figured it was the chemo but today my weak leg (by far) is my right leg. I went to an acupuncturist, then an advanced pain solution Dr. then finally my PCP referred me to a neurologist. Diagnosed with CIDP in June, 2019. What is interesting is that I have had a very mild case of Lupus for 16 years prior to my BC diagnosis. I had my ANA tested throughout the years to see if it was still in my system. I always tested Lupus positive.

      When my Dr. did extensive blood testing in June, 2019, he said my ANA was negative meaning I don’t have Lupus. So, did it turn into CIDP with the chemo I received for BC? I don’t think I will ever know but it is very suspect.

      One final item worth mentioning. I did tons of research into chemo before I began treatment. I got 3 different opinions, one being the Mayo/Jacksonville, Fl. All said do the chemo as Triple Negative is the only BC with no targeted treatment. It was a must. My biggest fear was getting peripheral neuropathy as a result. I did the Dignicap so I wouldn’t lose my hair, and I put my hands and feet on ice during each of the 16 chemo treatments. Research found said if I did this, I would minimize neuropathy effects.

      Instead, I have neuropathy in spades. Besides my weak right let, I discovered I was no longer able to point my toes. Probably one of my very first signs of CIDP.

      I pray everday they find a cure for those of us with CIDP, or a treatment that is more effective. IVIg helps but not to the degree I would like it to.

      Lynn

    • #117565
      Alex Baglioni
      Participant

      Did you have a surgery prior to you being diagnosed? Do any of you have an implant?

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