feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Anyone here dx'ed with cerebral vasculitis? Or vasculitis in general?
Posts: 3975 | From usa | Registered: Aug 2007
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CaliforniaLyme
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posted
I was diagnosed progressive encephalopathy and hed begun to go into true dementia but because we knew it was from Lyme there was no need to do studies on it for further definition-
There are not too many of us tertiary Lymies about, Feelfit*)!!! Glad to have you here.
I am glad you are on IV Rocephin!!!! It is the appropriate treatment for Lyme vasculitis.
Best wishes, Sarah O.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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feelfit
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Member # 12770
posted
Sarah,
As always, thank you. You are so appreciated, truly.
posted
those who have a positive spect scan...this reflects cerebral vaculitis. however...not many people have recieved the definitive diagnosis which in the case of vasculitis in other cases is made by brain biopsy.
the reason CNS lyme patients do not recieve brain biopsies is open to speculation. it is likely due to the scandalous control over these issues by ID docs. they control, in large part, access to academic pathologists and neurosurgeons. the typical LLMD cannot usually refer for biopsy, for numerous reasons. this is one of the major scandals in lyme, because in all other types of cerebral vasculitis brain biopsy is always performed. the reason for this is simple: some types of vasculitis are due to autoimmune causes, some are not. the type of treatment implemented is dependent upon determining the type of vasculitis.
in the establishment literature, stony brook docs have published on this issue. only one or two pubished reports have appeared.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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feelfit
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posted
True cerebral vasculitis is very rare, 3 in 10,000 people are diagnosed.
AB is correct in that the only way to positively dx CV is by brain biopsy.
True Cerebral Vasculitis is treated w/steroids....usually mega doses.
Hyperprofusion evident in a SPECT is usually indicative of some sort of vasculitis.
Infections can also cause vasculitis. PubMed cites 87 articles on Lyme Vasculitis.
In these articles, IV Rocephin is the treatment that is usually referred to. Often times after treatment w/ IV Rocephin, the vasculitis is reversed.
I would venture to say that vasculitis can be very serious. True vasculitis w/o treatment is almost always fatal.
Posts: 3975 | From usa | Registered: Aug 2007
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quote:Originally posted by feelfit: True cerebral vasculitis is very rare, 3 in 10,000 people are diagnosed.
AB is correct in that the only way to positively dx CV is by brain biopsy.
True Cerebral Vasculitis is treated w/steroids....usually mega doses.
Hyperprofusion evident in a SPECT is usually indicative of some sort of vasculitis.
Infections can also cause vasculitis. PubMed cites 87 articles on Lyme Vasculitis.
In these articles, IV Rocephin is the treatment that is usually referred to. Often times after treatment w/ IV Rocephin, the vasculitis is reversed.
I would venture to say that vasculitis can be very serious. True vasculitis w/o treatment is almost always fatal.
to qualify an above comment... 'true' cerebral vasculitis is normally referred to as 'primary' cerebral vasculitis. this means that it arises independently of a triggering mechanism. it is a poorly understood and very dangerous condition. 'secondary' vasculitis is triggered by something else. it is less agressive, although still disabling, and is easier to treat, because you can usually identify the cause. once you know that, you can treat the cause.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yes, feelfit, I am SO glad you answered because I did not know whether you knew that or not and was scared to write it if you didn't because I didn't want to scare you. yes, true vasculitis can be fatal. I was SO glad you went on Iv Rocephin. Vasculitis causes anoxic encephalopathy which has many variations in the way it can manifest- coma- stroke- stopping breathing- ANYWAY, yes, Rocephin is best treatment. On the memorial page there are multiple death certificate deaths from anoxic encephalopathy and vasculitis. But people were NOt on Rocephin, not in treatment...
Anyway Cavey, Feelfit covered it. I hope the IV does for you what it did for me Rhonda!*)!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Have requested a copy of this journal article from local hospital library. The neuro who wrote this article specializes in neuroborreliosis. He is currently chief of neuromuscular disorders at NYU hospital.
Hubby has an appointment with this doc on 12/03. Will be discussing Lyme vasculitis among other issues.
Have been told this doc treats with IV IgG among other things.
Younger DS. Department of Neurology, New York University School of Medicine, New York, New York 10016, USA. [email protected]
PURPOSE OF REVIEW: Vasculitis refers to heterogeneous clinicopathologic disorders that share the histopathology of inflammation of blood vessels. When unrecognized and therefore untreated, vasculitis of the nervous system leads to pervasive injury and disability making this a disorder of paramount importance to all clinicians.
RECENT FINDINGS: Remarkable progress has been made in the pathogenesis, diagnosis, and treatment of vasculitis of the central (CNS) and peripheral nervous system (PNS).
The classification of vasculitis affecting the nervous system includes
(1) Systemic vasculitis disorders (necrotizing arteritis of the polyarteritis type, hypersensitivity vasculitis, systemic granulomatous vasculitis, giant cell arteritis, diverse connective tissue disorders; viral, spirochete, fungal, and retroviral infection;
SUMMARY: Vasculitis is diagnosed with assurance after intensive evaluation. Successful treatment follows ascertainment of the specific vasculitic disorder and the underlying cytochemical mechanism of pathogenesis.
Clinicians must choose from among the available immunomodulating, immunosuppressive, and targeted immunotherapies, unfortunately without the benefit of prospective clinical trials, tempered by the recognition of all of the possible medication related side effects.
PMID: 15167068 [PubMed - indexed for MEDLINE]
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thank you for your responses.
Bea, pls keep me informed about your husband as well as his neuro appt. Do you have contact info for this Doctor?
Kelmo, micro-vascular disease is of the very small blood vessels, not the medium to large. I really do not think that it is as dangerous. My ID said that he has seen that in some of his other Lyme patients, but never my condition, my vasculitis affects medium vessels.
Sarah, yes, I am aware, sometimes I think that researching too much becomes overwhelming. I hope that IV Rocephin works. i am glad that I am being treated properly.....and the support here is awesome
posted
just thought that I would add that the spect is not the best one as I think pet is...so normal pet for me and abnormal spect...the doc said it was not vasculitis...due to the normal spect. eric
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
most people don't have access to pet scanning for lyme vasculitis.
just out of curiosity, what were your spect results? was it a little abnormal, or a lot abnormal?
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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posted
I got vasculitis on my fingers and toes on and off for a few years now. It causes/acompanies with swolen joints that are purple and get VERY painful noduals on them... kinda weird.
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