posted
Hi all I developed CIDP very quickly and aggressively. Diagnosed by my LLMD. Assuming caused by the Lyme. I am being treated for Lyme, but will be going to Neurologist for CIDP follow up diagnosis. Likely they will want to put me on Steroids, which is contrary to Dr Burrascano's protocol. My LLMD told me I need IVIG, but that takes time and money to get implemented. I cannot afford a lot of time before starting to improve.
Any suggestions on treatment??? Or how to speed up the IVIG treatment??? I need to get this process kick started in the worst of ways. Suggestions on how to slow down CIDP progress.
Any help will be very much appreciated. Thank you
-------------------- Vic Posts: 7 | From Austin, Texas | Registered: May 2015
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Are you having motor problems, that is with movement?
The best neurologist for getting IVIG authorized is in CT (and tends to be pretty booked up). That is a long way from you, but still might be a good option.
I've been on IVIG for years for CIDP.
Do you have a top notch LLMD? If not, you also need one ASAP, as you will need treatment for the infections, along with the IVIG. Texas is not known for many LLMD's, sadly.
Go to "Find a doctor" to find the best one for you, but you may well need to travel a ways to get one good enough for your situation.
The same goes for a neurologist for the IVIG, although, I suppose you could start where you are. But truthfully, you will need someone who is either "Lyme Literate" or at least Lyme sympathetic.
Posts: 3771 | From around | Registered: Mar 2008
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posted
I saw Dr K in CT 10 yrs ago. He is big on using IVIG for neuro lyme patients. I needed a TX doc to write the order to get it covered by ins. Medicare also will cover IVIG for. CIPD I get 50g every 3 Wks
Posts: 315 | From USA | Registered: May 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Had to look up what CIDP means. For others: Chronic Inflammatory Demyelinating Polyneuropathy
Do NOT do steroids. Do NOT. Please. By all means, there are so many other - better - options.
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I was diagnosed in October with cidp. It took 9 months to get the proper diagnosis. It was diagnosed by a emg test a neurologist order for me.right be for that I was diagnosed with autoimmune disease. I am chronic lyme and bart and babs. But have had good years in between. My lyme md sent me to a neuromuscular md who has success with obtaining approval for ivig. It took him about 6 weeks to get me started. He is in Trenton nj. There is one in new york who did studied and researched ivig but he is big bucks. If you are on medicard it should be approved if you meet the criteria. Do you have autoimmune. God bless theresa
Posts: 479 | From nj | Registered: Nov 2000
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posted
Also the ivig requires pre meds of prdcnisone, ibuprofin and benadryl and I also take plaquenil for autoimmune. Theresa
Posts: 479 | From nj | Registered: Nov 2000
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Go directly to minute 51 and hear Dr. H. say that when you get lyme, your immune system can start attacking your myelin sheath because, in some people, the myelin sheath looks like the tail (flagella) of the lyme spirochete. So, the person suffers with demyelenation of the sheath.
So, this is how a person with lyme can have the movement problems and other symptoms of CIDP and the real cause is lyme disease.
Treat the lyme disease and the body stops attacking the myelin sheath and the so-called CIDP goes away.
By the way, rufishng has a herniated disc in his neck that is evidently causing his symptoms and not CIDP.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by Theresa: Also the ivig requires pre meds of prdcnisone, ibuprofin and benadryl and I also take plaquenil for autoimmune. Theresa
No, prednisone is NOT usually required for IVIG for CIDP!! I've had IVIG for years, rx'd by first one neurologist, who sadly was killed by a drunk driver, and since by Dr. K.
He would NEVER rx prednisone for IVIG. ANd I"ve never heard of any other doctor to rx's it with prednisone. Don't go near that.
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by Rumigirl:
quote:Originally posted by Theresa: Also the ivig requires pre meds of prdcnisone, ibuprofin and benadryl and I also take plaquenil for autoimmune. Theresa
No, prednisone is NOT usually required for IVIG for CIDP!! I've had IVIG for years, rx'd by first one neurologist, who sadly was killed by a drunk driver, and since by Dr. K.
He would NEVER rx prednisone for IVIG. ANd I"ve never heard of any other doctor to rx's it with prednisone. Don't go near that.
I think that it's important to receive IVIG for CIDP WHILE treating the infections, because many of us have major damage to the nervous system, often that has gone on a very long time.
IVIG's most important role for this diagnosis is to help to rebuild the nervous system to the extent that is possible. That is, some damage is bad enough and long-standing enough that may not be
repaired. But I have made progress in rebuilding the nerves. Granted, it is slow going and not a magic bullet. But I"ve had this all of my long life with uncountable known tick bites : - (
I say do it, as long as you can also do treatment with a top notch LLMD. If you have to chose between the 2, due to $$, then go with the LLMD only. But IVIG can be covered by insurance.
But the doctor to rx may not be. Their is 1 neuro in NY who rx's it, who takes insurance. But Dr. K is much more experienced, and rx's more frequent treatment.
Posts: 3771 | From around | Registered: Mar 2008
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