posted
An llmd told me that after a year of treatment for ld, some patients fall into the "vasculitis" catagory...what does this mean and how is it diagnosed and treated?
(She wanted to order a CT scan of pelvis area and neck area but my insurance wouldn't let me...)
Thanks, Kim
-------------------- We are spiritual beings on a human journey...
posted
I would say that means you have inflammation in the blood vessels. Have you had a CRP??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Most of us here don't believe in "post lyme syndrome" but rather in continued infection with a very clever organizm.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there human bean....
CRP is C-Reactive Protein blood test to determine why you have inflamation(infection) somewhere in your body.
"Post Lyme Syndrome" is a dirty phrase around here....Resistent Persistant Infection is a better way of calling what we chronic lymies suffer from....
I submit that if they're looking for reason for your inflammation they need go no further than the aforementioned infectious agent...lyme/TBD(I).
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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I agree about the infectious stuff but doesn't anyone wonder if there might be something else going on? That the infection may have triggered something else?
I often think that maybe I am dying of cancer and nobody is looking for that cause I keep obsessing about lyme...
Just being a pain today sorry
-------------------- We are spiritual beings on a human journey...
posted
Ha, "Post-Lyme Syndrome"... seems to imply you can get better from Lyme without doing anything. Maybe you can, but two years on with no treatment, I'm worse than ever.
Originally, several docs were telling me I had "Post-Viral Fatigue" and just needed to sit it out. This diagnosis was based on my GP's initial diagnosis which went "you're neck is swollen - you have a virus". Since that was a few months earlier, they insisted that the virus must have gone. Therefore, since I was still ill, it must be "Post-Viral" syndrome.
Brilliant powers of deduction. No tests ordered, they can evidently work it out just by talking to you. And they get paid for this?
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yo HO Human...
I've shared some info about vasculitis below for you. I can see you are concerned. Not to worry.
Once you reach a certain "stage" in Lyme/coinfections.. for lack of a better term... various symptoms can mimic other disorders that already have been noted in medical literature.
Example.. we have folks here who have the Parkinson's-like presentation of Lyme. Some have the fibromyalgia-like syndrome... and some have the MS-like syndrome.. some have seizures with their Lyme presentation... etc... etc.
It doesn't mean you have a new "disorder". It simply means some of your symptoms meet the criteria of what has already been described as something that they think has "no known cause and no known cure".
We know it to be Lyme and coinfections in our case. My bet is some of us have coinfections that haven't even been "discovered" yet.
Now.. let's say you were diagnosed with Lyme and had suffered with depression and anxiety as part of the symptoms/signs. The wise thing to do would be.. in addition to addressing the cause for the infection.. you would need to address the actual depression/anxiety too.. until you are well enough to stop having that particular problem.
Example... sometimes Lyme causes insomnia. If we all waited until the Lyme was gone so it would eliminate that problem .. we would all have suffered above and beyond with many sleepless nights.
As for the vasculitis. Read the info below. Does it sound like this could be Lyme? It probably is.. but the problem is they don't KNOW it yet... and therefore.. don't know how to treat it.
I have what is called "mutton fat" deposits in my eyes. Real sexy name, eh?
Anyhow.. it is actually "globs" of inflammation that is caused by the infection tearing up my system.. and the resulting inflammation. Kinda like what your LLMD described as your vasculitis. It comes from the inflammation.. and/or the effects of the infection on the blood vessels. My thought is it might even stem from Babesiosis? Just a weird Tincup thought though... I have no proof.
Sooooooooooo... hope this helps?
PS.. This disease is so .. so.. so.. varying.. and so... so.. so.. AWFUL.. that if you didn't think about having "something else" that could be causing your problems.. such as cancer... you wouldn't be normal.
Vasculitis is an inflammation of the blood vessels. It can affect capillaries, arterioles, venules, arteries & veins.
If a small blood vessel (capillary) is inflamed, it can break, which leads to bleeding in the tissue, which appears as small red/purple dots on the skin. If a large blood vessel (artery or vein) is inflamed, a nodule may be produced, & the inside of the vessel can become narrow, which means that not as much blood can flow through the vessel. A blood clot may form inside the vessel, blocking it. If this happens, no blood can get to the tissues & they can start to die, this can lead to gangrene.
Vasculitis can be caused by an infection of the blood vessel walls, or an immune reaction in the vessel walls.
Vasculitis can cause different symptoms, depending on which part of the body is involved. The symptoms can vary from very mild to causing major organ damage.
The symptoms include - muscle & joint pain, fatigue, malaise, fever, weight loss. Red/purple dots (known as petechiae) can develop on the skin, larger spots are known as purpura. Other skin symptoms include - hives, lumpy rashes, gangrene of fingers & toes, ulcers.
Vasculitis in the brain can cause seizures, strokes, headaches & confusion. It can affect the peripheral nerves, causing numbness & tingling, & loss of sensation. Vasculitis in the heart & kidneys is uncommon in lupus patients. In the lungs it can cause attacks which are like pneumonia, which can lead to scarring of the lung tissue.
Blurred vision can be an indication of vasculitis in the small blood vessels in the retina.
Vasculitis can be diagnosed using blood tests, abnormalities which normally show up are a high white blood cell count, high platelet count & an elevated sedimentation rate (ESR).
Tests specific to the part of the body involved may also be used, e.g. EKG & echocardiogram for heart involvement, chest x-ray for lung involvement.
Mild cases of vasculitis (confined to the skin) do not usually need treatment. Severe cases can be treated with corticosteroids and cytotoxic drugs (azathioprine & cyclophosphamide)
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Great job there tinney!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Very nice.. but too bad you said that.
You will run back here and change it when you read my response to your reply at the Bowen post.
posted
Thanks for all the great info tinny. I have many of the vasculitis type symptoms in your post. Also big weight loss and major "vessel pain, throbbing (I can hear the whooosh of my beating heart each beat.)
I guess the next step is to keep going on abx. I am in so much pain on them lately that I have been starting and stopping to avoid the ER.
I am just taking a week holiday and hopeing the cytokines fad down alttle till restarting.
Thanks for caring and being here for us.
Kim
-------------------- We are spiritual beings on a human journey...
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