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Thursday, January 22, 2009

Lyme and CIDP

I have been treating a 45 year old male for several months. He has been sick for a very long time. He is seropositive for Lyme disease and Babesia. He has complained of searing total body pain, joint pain and cognitive difficulties for several years. he had become disabled. I tried treating him with a variety of oral and IV medications, with poor results. It has been a frustrating case and I have tried many different strategies. Finally he called me telling me that he had sudden weakness affecting his lower limbs and he was unable to stand. He went to the Hospital and was diagnosed with Guillan Barre syndrome. He was treated with plasmamapharesis. He had a reasonably positive response. He was able to walk but he was still in severe pain and had total body weakness. He was discharged to a rehabilitation facility before returning to see me in the office. I took another look at him. The diffuse, searing neuropathic pain had been ongoing for years. He had weakness of his legs- but there was also weakness of his arms. He had a diffuse loss of sensation to sharp touch in a diffuse pattern. His pain was also very diffuse. His deep tendon reflexes were diminished. He had evidence of mild muscle atrophy diffusely. The neurologist at the hospital had been dismissive. It was Guillan Barre syndrome. Both his intense pain and Lyme disease were dismissed. Unfortunately, my patients frequently get substandard care when they are admitted to the hospital: " Oh no- not another one of so and so's patients."

Guillan Barre is an acute syndrome. It is associated with an ascending neuropathy. This patient had a chronic neuropathy with an acute exacerbation. The plasmapheresis had bought him a little relief, but not much. I am a family doctor- not a neurologist. But it became clear to me what was going on with this patient. He has CIDP- chronic inflammatory demyelinating poly-neuropathy. The disease is a cousin of Guillan Barre, but it is different. It is a chronic disease. It is an autoimmune disease of the peripheral nervous system. Auto-antibodies attack the lipoprotein coat of peripheral neurons, causing diffuse demyelination of the motor and sensory peripheral nerves. In this case, I believe it was Lyme mediated- at least in part. Every time I had prescribed antibiotics for Lyme I only made matters worse. killing Lyme led to increased antigen presentation- feeding a malfunctioning immune response- cranking out noxious auto-antibodies. This is consistent with my model of how Lyme and other germs provide fuel for an autoimmune process. While many believe that autoimmunity is self perpetuating once it begins; it has been my experience that a reduction in germ load can frequently help quiet down the process.

A diffuse loss of myelin of sensory nerves could easily explain his uncontrollable pain. Similarly, the loss of myelin of motor nerves could easily explain the diminished reflexes, weakness and atrophy.

I temporized his therapy with intramuscular injections of steroids while introducing heomeopathic doses of Minocycline. I referred him to a neurologist- whom I believe will do a more thorough evaluation. EMG and NCV studies should confirm the diagnosis.

I also referred him to a hematologist whom I believe will soon start IViG therapy.

Physicians who treat Lyme disease you must be well versed in all of the autoimmune syndromes of the nervous system; It is clear that Lyme can be associated with any one of them.

The widely held injunction prohibiting the use of steroids is not necessarily the case with severe autoimmune disease. Plasmapheresis and IViG are not always practical. The main problem in this patient is not Lyme infection- it is autoimmune disease. A focus only on Lyme wold be a disservice to my patient. I also believe that a focus which excludes Lyme disease would also be a disservice. In my mind, it makes sense to temper steroid therapy with low doses of antibiotics. But of course this is theoretical and speculative. At least I now think we are headed in the right direction.


Jennifer said...

*ouch* I hated when I had the EMG & NCV done by the Neurologist when we didn't know what was going on with me!

Of course it cleared me of ALL "problems" and I was sent home with neurontin and and eye roll.

Then I found Lyme Disease.

Michele said...

What is his prognosis now that he has been properly diagnosed? I find it amazing that you have such a wide, no huge, depth of knowledge and experience to be able to diagnose these diseases. He is a lucky man. What is the cause of his disease? Is it known?

jenbooks13 said...

I'm glad he's getting IVIG. Would you also consider antifungals? It's a long story (based on my own experience) but some of us complicated autoimmune type lymies have as bad a response to fungus as we do to lyme.

Unknown said...

My daughter was diagnosed and treated w/ IVIG for CIDP by Dr. David Younger, a neuro-muscular specialist in NYC who is working on the connection between Lyme and CIDP, he has many patients ...perhaps a consult in person, or via phone would help your patient??

I hope he feels better soon. My daughter also has had pretty poor response to IV and oral abx, the IVIG has brought minimal relief too...

Lisa said...

My son has been diagnosed with Lyme Disease and CIDP. He receives IVIG infusions every 3 weeks (and not a day later), which maintain his neurological symptoms and minimize weakening. We are still enduring long treatments with antibiotics. I see no end in sight, but hope for a resolution. Thank you for furthering the cause of linking these two ailments in hopes of finding relief for sufferers.

Becky said...

I've been seen by two neurologists who say I have neuropathy, but not severe enough to explain the pain, tingling and burning in my legs that I've endured for the last 9 years. It began in my lower legs/ankles and progressed evenly, and slowly, up my legs and then into my arms. I even joked to my doctor that it felt like a "slow Guillian-Barre'".
This spring I was diagnosed with Lyme disease and Epstein-Barr. After 3 trials of Doxycycline, I'm still in pain and having difficulty walking. I think I may have gotten Lyme's in 1985-88.
My doctor is trying to find me a Lyme Doctor to go to, as there doesn't seem to be one in Ga. My CD-57 is 22.
Thank you for you article. I'd been wondering about CIDP myself, 9 years down the road, I wonder if it's too late for me...if I'm condemned to a life of debilitation, or if I can ever walk with ease.

Lisanne said...
This comment has been removed by the author.
Lisanne said...

I am not sure how to reach you via email, or even what your name is, but I have been following your blog for the last year-and-a-half and find you to be very wise and informative. I have been struggling with Lyme Disease and now I believe I have neurological Lyme and some scary complications.

If there is a way you can contact me, I'd like to consult with you. I'd be happy to pay for your services. I live in NY.


Unknown said...

HI...I have some symptoms similar to this patient. I always wonder how this person is doing, and whether treating CIDP was helpful.

Unknown said...

My son was diagnosed with Lyme in June, but had weakening muscles since April. His symptoms intensified after being treated with oral antibiotics. He couldn't walk up and down stairs, get out of chairs, turn keys, or open bottles without ia struggle. We brought him to his pediatrician, an infectious disease doctor, a Lyme specialist and three different neurologists before we got the cidp diagnosis. The last neurologist suggested immediate hospitalization on ivig. We saw significant progress after only his second treatment of four in the hospital. He is home on an iv picc line with rocephine... To be sure the lyme has really been zapped. Three weeks after treatment, he Is about eighty percent back to normal with a very optimistic prognosis..his neuro doctor thinks there is a very good chance that the ivig may not need to be repeated. This is such an insidious disease and each case is different. Just don't know why so many doctors missed this with the prevalence of Lyme in our area. One neurologist even told him she was sure he had MD! Good luck to all of you and thank you to the original doc who made this post... The info needs to get out there!!!

Anonymous said...

Very nice post, impressive. its quite different from other posts. Thanks for sharing.

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