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Forums Forums Main Forum Lyme, Neuropathy, CIDP and IVIg

This topic contains 7 replies, has 6 voices, and was last updated by  skeather 1 year, 3 months ago.

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  • #7814

    Hope09
    Member

    My sister was diagnosed with lyme disease by a “lyme-literate MD” (LLMD). After six full months on aggressive IV antibiotics she lost her complete ability to speak and to walk. She is completely dependent on her care by others.

    The LLMD referred us to two highly credentialed neurologists. One stated that lyme might have triggered an autoimmune response which led to polyneuropathy. It appears to me, a layperson, that would be extraordinarily unusual for lyme to produce the degree of disability she is experiencing – particularly in the face of 6 months of antibiotics.

    The other neurologist issued his summary findings, observations and recommendations. Both counseled for: IVIg therapy for demyelinating neuropathy

    For the past 4 full months she has been receiving IVIg therapy at home once per week and physical therapy three-times per week. Her lead neurologist is optimistic for her recovery. Family members have stated that her recovery at this stage is imperceptible. We are worried. The neurologist stated that one of the more clearer signs that she is on the path to recovery is that she has not deteriorated. I would observe that this is the only sign. I am sure there are several other scientific indicators relied upon.

    The lead neurologist continued by saying that it took a long time for her to be in the hellish state she is in and recovery will take equally long.

    Based on your experiences is any of this normal? Is this within the realm of expectations? Can IVIg recovery appear non-existent for many months then show small incremental signs of recovery before further recovery?

    Your thoughts and input are appreciated.

    #80925

    Julie
    Member

    Yes IVIg can take a long time to show improvement – about 8 months for me before I noticed I was able to walk better – and now two years later the difference is noticable to everyone. Nerves grow slowly and if there is a constant inflammation and attack then its a constant battle between demyelination and remyelination. Did the doctors say whether they suspected a recurring attack or a one time deal? Since she is getting IVIg I suspect a recurrant attack – if this is the case it can take a LONG time to get better. You all are doing the right things, try not to lost hope, Hope. :) It’s been nearly three years since my bad attack and I’m still regaining functions previously lost, each month I notice something small to celebrate. It might help to keep a journal of progress – I’m sure the physical therapist is doing this so you could build off of that. It took awhile for me to realize I was better and writing things down would have helped me feel that I was improving sooner than I noticed it on my own. Even now I sometimes have to stop and think “two months ago I couldn’t stand up to brush my teeth” or something like that. Celebrate the small stuff – eventually it adds up to big improvements. :p

    Julie

    #80927

    boomerbabe
    Member

    Hope,

    I was told that it takes abut a month for one inch of nerve to heal. Now, I was told this over 30 years ago, so I don’t know how valid it is. I do know it takes a long time. I never had IVIg.

    Good Luck and God Bless

    #80929

    Hi Hope,
    You might want to looki up a members name of Gopal I believe. About 2 years ago he would come to the site. He was originally dx with lymes and did the protocol antibiotics and later was thought to have cidp. You might gain some insight from the similarities.

    As far as the lymes disease triggering an autoimmune response, it could be very likeley. Any illness, trauma such as surgery, aneasthetic, or possibly in my sons case multiple bee stings could cause the reaction. The bodies immune response turns on to fight something off, cold, bees, etc. and then it get confused and does not shut off. Regardless of the antibiotic administration. Once the process is started, with cidp, the response attacks the nerves in this autoimmune issue. (other autoimmune responses, allergies attack sinus, exczema attacks the skin, diabetes, rosacea and on and on) Essentially how it starts is as an inflamation on the myelin sheath, the protective covering on top of the nerve bundles, as compared to the orange part on top of an electrical chord. As the demylienation process continues untreated, the inflamation continues and the brain is no longer able to get the transmitted message through the myelin to the nerves, to the muscles to do the task, hence your sisters state. If the damage continues, it goes through the myelin into the nerves where axon damage occurs. It is believed that one cannot repair from axon damage, however there are current studies being done on a drug that is already approved for other illness that does regenerate axon damaged nerves. Apparently the drug has to be given sooner than later, perhaps your sister could qualify as a test subject if interested. I believe the foundation may have funded part of the study, not sure though, it was talked about at the recent symposium.

    Yes, it can take a while for some to show improvement while on ivig, some show improvement in hours, as did my son, others take months. That is the most important thing to remember with this illness, everyone is different regarding treatment plan, reaction and symptoms etc.

    I would agree that no further deterioration would be indicative of a halt of the demylienation process, therefore constituting improvement. There are many combinations of treatment plans. Some also do pp, or plasma pheresis as it is spelled out, FOLLOWED by ivig. Additionally, a typical ivig protocol for first treatment is 5 CONSECUTIVE days of ivig at a rate of 2g/kg. To get that dosage, you take the person’s weight, divide it by 2.2 to give you their weight in kilograms and then you multiply it by 2 for the 2grams of ivig per kilogram of body weight. I would assume that the neuros have done all of the basic blood work to check for titers regarding ivig being safe, as well as l/p’s or ncv/emg’s for diagnostic purposes as well as for a comparison down the road when measuring improvement or decline. If you would like to talk, you could private message me and we could exchange phone numbers.
    Good luck to you and your family,
    Dawn Kevies mom

    #81135

    Erin
    Member

    The LLMD referred us to two highly credentialed neurologists. One stated that lyme might have triggered an autoimmune response which led to polyneuropathy. It appears to me, a layperson, that would be extraordinarily unusual for lyme to produce the degree of disability she is experiencing – particularly in the face of 6 months of antibiotics.

    Hi Hope,
    My history is similar to your sisters. I had undiagnosed lyme and co-infections for many years. When I finally got a lyme diagnosis, I was very ill and put on IV abx. Initially I saw symptoms improvement, but then started a path to neurologic decline and was immediately referred to a neurologist experienced with lyme and movement disorders.

    As my neuro described it to me, the lyme spirokete is a very aggressive bacteria. It will hide in, and infiltrate cells of the body on any level. It seems at times that treating with antibiotic in some individuals drives the spirokete deeper in places in the body where it previous had not been. The spirokete is very intelligent. Our immune systems try to be equally intellegent. When the spirokete goes to hide in the myelin, the immune system goes after it. This is were the immune system gets confused and damages it’s own cells trying to get rid of the spirokete.

    This description makes sense to me. I have been on IVIG for almost 2 yrs. I had severe seizures, balance issues, sensory loss all over my body, temperature regualtion issues, swallowing and digestive problems and respiratory muscle partial paralysis.

    Everything is better… not gone, but much much better. After my first dose of IVIG, my continuos tremors stopped. From there, it has been a slow and often continous up hill journey of improvement.

    I hope you sister has similar results. Send me a private message if you wish and I’d be glad to arrange to talk with you and her.

    She is indeed blessed to have asister who cares so much.

    #81151

    Hope09
    Member

    Erin, Dawn Kevies mom, boomerbabe and Julie,

    Thank you for taking the time to read my post, and, moreover, for your responses. Your experiences and knowledge are extremely helpful in many ways; one, in particular, in that it provides encouragement to my sister.

    All the best,

    Hope09

    #81570

    Hope09
    Member

    My sister visited her neurologist last week. The neurologist stated several of his patients have shown a non-existent response for many months while on IVIg before improving. This is consistent with comments found here.

    He stated improvement is expected and that improvement would be gradual.

    He further stated that she should have a skin biopsy test conducted again to determine if the pattern of denervation has stopped; to see if there are any nerve fiber(s) growth relative to the first test conducted. A positive result will indicate evidence of recovery, which has yet to outwardly manifest in physical terms. The neurologist stated he is likely to increase the dosage of IVIg independent of the test result.

    As an observer, it is difficult to see how a brilliant and vibrant young woman could be as incapacitated as she is from disease. Debilitated, in the sense that she has lost the complete ability to speak and walk.

    Your comments from your experiences are welcomed.

    Thank you.

    #108017

    skeather
    Member

    Thank you so much for this thread!!! I had a diagnosis of multiple infections causing CFS and got a small dose of IVIG. I felt fantastic for all of 3 weeks and than crashed to a new low that was incredibly lower than the bad shape I was in prior to treatment. I was ruled out for CIPD…my EMG was positive for polyneuropathy, but only level 1 and CIDP takes a level 3 out of 4 for dx… so I wondered if what you stated above could have happened to me but I had no way of proving anything. I became unable to walk, vertigo was awful, terrible short term memory etc. I have permanent changes in my skin, I had some other “co-infection” stuff too…abdominal swelling, passing out from dysautonomia going out of control etc. I’m better, but now my legs have discolored, mottled some and want to swell and i react to cold with disappearing veins and now my arms have some discoloration, my lower left leg feels like horrible bone pain in the shins… I’m looking into bartonella and I do have babesia. I’m on po antibiotics at the moment, but have to be careful of my GI as it has been messed up – leaky gut syndrome, IBS with dysbiosis, and also had to be treated for citrobacter strains. I’m open to other suggestions :) I’m trying to learn all that I can for me and for others as I am a nurse practitioner that wants to work in this field of expertise to help people not suffer the way I have. You can email me at nurse.skeather@gmail.com

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