Topic: Something that may help us. Plasma Exchange.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Something else that may help....http://www.ncbi.nlm.nih.gov/pubmed/20888238
2010 Sep 29 Neuromyelitis optica (NMO) is an uncommon idiopathic demyelinating disease of the central nervous system and is sometimes unresponsive to steroid treatment as compared to multiple sclerosis (MS).
There are only a few reports o...f plasma exchange (PE) as an effective rescue treatment when high-dose steroid therapy fails in exacerbations of NMO.
Thus, we aimed to evaluate the efficacy of PE for acute attacks of NMO that failed to respond to high-dose steroid therapy.
A retrospective review and clinical follow-up were conducted in two hospitals from January 2001 to January 2008. We recruited patients with NMO who had failed to respond to high-dose steroid treatment, and who then received PE d uring an acute relapse. We evaluated a global functional assessment of the change in the neurological condition, and the Expanded Disability Status Scale (EDSS) score.
All nine patients were middle-aged women (mean age: 48.7years old), five of whom tested positive for anti-aquaporin (AQP)-4 antibodies in the study.
The patients were severely disabled at the initiation of PE (median EDSS score, 8.7; range, 8.5-9.0). Improvement occurred early in the course of PE.
At the 2-month post-PE follow-up, eight of nine patients had improved to their pre-attack condition.
This study highlights the potential role of PE as a rescue therapy in the management of steroid-unresponsive acute attacks of NMO, especially in patients with auto-antibodies against AQP-4.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Haley
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Member # 22008
posted
Would plasma exchange be similar to a blood transfusion?
I was watching a show called "The Monsters Within" Probably not a show I should be watching. It's mainly about people that get sick from parasitic diseases.
They had a guy on there that got extremely ill. They diagnosed him with Babesia. He didn't have a spleen and none of the abx were working. They gave him lots of blood and continued a long transfusion.
He was cured after that!
Posts: 2232 | From USA | Registered: Aug 2009
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'Kete-tracker
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Member # 17189
posted
Sooo... How would "Neuromyelitis optica" [NMO], an "idiopathic demyelinating disease" be related to Lyme disease, which is known to be the result of an invasion of the body tissues by a pathogen ... more specifically an alien, spirochetal bacterium?
Me thinks that if the causitive agent, B.B., is rarely "in suspension" (so to speak) in the blood, any PE would be PL (pointless ).
BTW, I just love the use of those big words in medical research papers. "ideopathic" Why don't they just say "mystery disease"?
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lyme is a demyelinating disease. The infection causes a breakdown of the protectiive myelin sheath around the nerves. With treatment, that can be stopped but damage is not always repaired. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
Maybe that's why I Still have early-A.M. periphrial neuropathy in my outer arms... years later?
(Either that or an "un-addressed co-infection", as THE Dr. R put it... like a BLO.)
Keebler- Any naturophathic or supplemental suggests to encourage some more myelin sheath nerve repair?
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There is some research that shows Lion's Mane (medical mushroom) may help the myelin sheath of the nerve repair. Years ago, I came across a study where this had helped some MS patients (Prior to 2003 when I heard about it.)
The therapeutic dose may be higher than what is in most capsules.
This is just one commercial site, I don't know about them, specifically, but it's just one place of interest.
A.A. Bogomoletz Institute of Physiology, National Academy of Sciences, Kiev.
Myelin sheaths, wrapping axons, perform the following important functions: support, protection, feeding and isolation. Injury of myelin compact structure leads to an impairment and severe illness of the nerve system.
Exact mechanisms underlying the myelination process and myelin sheaths damage have not established yet.
Therefore search for substances, which provide regulatory and protective effects on the normal myelination as well as stimulating action on the remyelination after myelin damage, is of special interest.
Recently it was shown that extract from mushroom Hericium erinaceus had activating action on the nerve tissue. So the aim of the present work was to study an influence of an extract from H. erinaceus on the cerebellar cells and the process of myelination in vitro.
Obtained data revealed the normal growth of the nerve and glial cells with extract at cultivating. No pathologic or toxic action of the extract has been found.
The cell ultrastructure was intact and similar to that observed in vivo. The process of myelination in the presence of the extract began earlier as compared to controls and was characterised by a higher rate.
Thus, extract of H. erinaceus promoted normal development of cultivated cerebellar cells and demonstrated a regulatory effect on the process of myelin genesis process in vitro. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I met someone who told me she had been misdiagnosed with lyme disease and had this procedure instead of lyme treatment and was now in good shape. Don't know what to think about this story.
Infection driven autoimmunity certainly does seem to occur with lyme disease, so the question is whether people who are still infected would be helped by a procedure like this, when the autoantibodies could still be created afterwards.
Posts: 8430 | From Not available | Registered: Oct 2000
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Similar almost to IVIG, a less invasive treatment which could be tried first.
I am on IVIG, and it is helping me dramatically. When I researched plasmapheresis I thought it did involve donor antibodies, such as IVIG does.
IVIG is extremely safe and can really turn things around. It has made a huge difference for a lot of people. You receive donor antibodies and it helps your immune system. It can be very hard to tolerate, especially at first though. You have to be "warrior ready" to take on this treatment. No one told me that beforehand!
It is a form of blood transfusion in the sense that you are getting donor plasma. However it is a blood product, not whole blood.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
To further what Tracy said, I had plasmapheresis done first and then started on IVIG (and have been on IVIG for about 1 and a half years). I look at them sort of as opposites. Plasmapheresis removes something (plasma) and IVIG puts something in (gamma globulin). When you have plasma taken out it is replaced with albumin (from what I remember) so you are not getting replacement plasma.
As far as I understand plasmapheresis isn't usually a long term solution as the antibodies that you have removed will eventually come back but it can help for awhile.
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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