Hi, I just joined the group today. I've just been diagnosed with CIDP probably the result of a Lyme infection that was never discovered until now years after the infection. The Lyme test came back positive after a search for the cause of the neuropathy was began. I'd like to know if anyone else has a history like this.
I feel lucky to be doing so well as compared to some of the comments I have seen. I've been losing sensation for over 20 years. I just had EMG and NCV test run, NR for legs and feet, Left hand also some NR results. Right hand is better than left. Both hands painful and cold. General fatigue and aching muscles in arms and legs.
Going to start Lyrica 75mg 2X daily and LDN (Low Dose Naltrexone) in the next few days. Prednisone i RX written but Dr. wants to observe reactions to the other two drugs first.
Thyroid meds to supplement T3 and T4 are being ordered and antibiotics for Lyme are on hold pending getting some of the above started and adjusted.
As I said in my profile, this is all new to me. Don't really know what to expect but collecting information.
Welcome. I also feel fortunate compared to most of the other folks. I have the neuropathies in the hands, legs and feet along with weakness, unsteady, fatigue etc. If I got pulled over I would get arrested for dui with out having a drink. Most of us have similar symptoms, some have worse than others. My symptoms started when I was in my mid 30 s, I had tingling in my face occasional tingling and numbness in the hands, then at 60 with more severe symptoms I was diagnosed with CIDP. Its a crap shoot as to how we got this stuff. I'm doing prednisone trying to go back on IVIG ( waiting for ins. co. approval ) . January 2013 I had a stem cell transplant. It didn't work. Doc put me on Pred. post transplant and have fluctuated dosage to hold off neuropathies. I was doing IVIG every three weeks and felt better than I do now. It seems as though most patients have a secondary problem as well. I have possible POEMS syndrome as well as MGUS. I don't know why they don't just call it SUISTMUYNS (screwed up immune system that mess's up your nervous system). The best thing that I can tell you is have a positive out look, exercise when you can and try and push through the fatigue when your able. Its good to communicate with others that are rowing the same boat that we are.
Hello, thanks for the response. I'm finding out something new every day and I've figured out that I won't be able to start any steroid treatment because I have an active Lyme infection. It seems that a bacterial infection like Lyme really loves steroids. So we're going to have to delay any possible steroid treatment until we have dealt with the Lyme.
It certainly sounds like you had your time of it and been through a lot of different treatments. I appreciate you sharing your experience, and I hope that you have success and better health.
Well my mother has asked several times if I have Lyme disease, to go along with everything else. I think I will add that to the list of question to ask at my appointment at the Mayo Clinic on the 24th of this month. Lord knows I have been bitten by enough ticks, but have never had a rash.
But I sure would like to stop falling or at least slow down. I don't know how much more my spine can take.
I never had the "lyme Rash" either, but the test came in positive and I have many of the joint, muscle, neuropathic, hypothyroid and other symptoms. Testing and diagnosis has ruled out almost everything else. After my experience of having Lyme for many years and not knowing it and no Doctor ever putting 2+2 together, I say everybody should at least have a routine Lyme test of some sort even though the negative results can't be trusted. If it's a postive more needs to be done.
bteeter said:
Well my mother has asked several times if I have Lyme disease, to go along with everything else. I think I will add that to the list of question to ask at my appointment at the Mayo Clinic on the 24th of this month. Lord knows I have been bitten by enough ticks, but have never had a rash.
But I sure would like to stop falling or at least slow down. I don't know how much more my spine can take.
My counselor is convinced I have Lyme disease along with my CIDP. I have had a test that came back negative, but he has heard there can be false negatives. I am a breast cancer survivor and have anti-mag, anemia and will be tested next month to see if I have a form of blood cancer. Wow it sounds like a lot when I write it down but I am actually doing pretty well. I can still drive to town and use a cane when I get tired, and I love working outside and playing with the dogs. The IVIG isn't working as well as it used to (I've been on it for 3 years) and my doctor is trying to get Rutuxin(?) approved by my insurance. I live in the country in the Pacific Northwest and it isn't hard to find all sorts of things to be grateful for. I hope you can find a treatment that works for you and maybe have just one health issue to deal with at a time. You will always find support on this site.
I'm new too. Do some research. You need to ask informative questions to some good detailed answers from the doctors. I was surprised with just using Google. Get a notebook and keep a diary. and a list of all your medications and what they were supposed to do. I started some diet supplements too. I never ate enough fish and I started taking an omega-3,6,9 supplement. I was surprised how chia tablets helped my cholesterol. Lastly, I suggest some exercise, at least to keep the weight down.
Nancy and Big Mike, thanks for your thoughts and best wishes a swift recovery. Mike, My GP first discovered I had a CRP of 34.5 on a scale of 1.0 to 3.0 or over ten times the reference level 1.5 years ago. Further tests at the time revealed no cause. I did discover that I was allergic to wheat, and stopping that solve a bunch of gastric (basically IBS) and skin issues I was having. I changed my diet to an anti inflammatory one, taking a wide range of supplements including Omega 3 as Krill, curcumin, and many others, started walking and got up to 3 miles a day 5 - 6 days a week and lost 73 pounds. With this my CRP is down to 10.4 and for a time my energy improved and my much of my blood work improved.
But the pain in the joints, legs, arms and hands only increased. Additional tests ruled out Arthritis and many other things. In the last three months my hands became a bit stiff, and more painful all the way to the fingertips. I started dropping things and it was painful to open things like soda bottles, and I'm a big guy who was very active in early - mid years. Eventually I was pushed by my wife and concerned friends to see a private Dr. (not on the insurance plans). He did an initial exam of 3 hours in length, from that we got the diagnosis of CIDP, hypothyroid (based of my history of blood work) and the suspicion of Lyme or Mercury as the root cause. He is the first to make any progress, and now at least 3 days after starting Lyrica I''m sleeping up to 5 hours a night and having much less pain, so it feels like a good start.
When I first began to experience leg weakness some 9 years ago, I was thought to have Lyme and tested positive on all Lyme tests. Unfortunately treatments with ceftrioxone and doxycycline did not relieve the weakness. The first two docs I saw then thought I had ALS. On the third try, at Johns Hopkins Hospital, I was finally diagnosed with CIDP. I suspect many of you have a similar diagnosis history. There is a lot of anecdotal evidence linking Lyme with CIDP but I have seen no credible study making this connection. Have any others had undiagnosed Lyme before getting CIDP? Does anyone know of a study attempting to connect the two diseases.
Hi, Do you know if your Lyme infection was recent at that time or perhaps years old? In my case it is many years old. In my own mind before the Lyme test returned I also wondered if it was from a series of injections for Hepatitis that I had in the same time frame as when my CIDP symptoms started. The Hepatitis injections were required at the time since I was working as the assistant to an Ophthalmologist in patient care and surgery.
roserider said:
When I first began to experience leg weakness some 9 years ago, I was thought to have Lyme and tested positive on all Lyme tests. ................
I do not know how old my Lyme infection was when I contracted CIDP as we live in a rural, woodsy area where ticks are everywhere and many of our neighbors have been diagnosed with Lyme. Since I had no rash or significant symptoms I have no idea when I contracted it. My wife is now being treated for chronic Lyme and her Lyme doc says he has numerous patients with CIDP.
Based on my short experience investigating Lyme and CIDP there seems to often be a link between them. I'm curious how many like me went years without a diagnosis of Lyme. In my case the first clue was a blood test for CRP (first one I ever had) about a year and a half ago. The CRP was 34.4 on a scale of 0 to 3 that started the whole process of looking for a cause for the high inflammation.