Hi, I have been diagnosed with vasculitis and lyme. I have had 12 weeks of rocephin, and while on it I would get shooting pains in both of my arms and sometimes in my chest. It went away after some weeks on rocephin. I have now been on different oral antibiotics at different intervals - Zithromax and Cipro. Each time I get the shooting pains in my arms again. This week, the doctor was treating me with Clindamycin because I had bronchitis. I noticed I got a throbbing pain in both arms again, but it got stronger more the nearer the time when I needed to take another dose of medicine. I don't know if the antibiotics are causing more inflamation or what? If anyone has any help in explaining what might be going on I would appreciate it. Thanks jloisu, I noticed you had some questions about vasculitis, too. Can you give any clues? Thanks
Posted by jloisu (Member # 7538) on :
Jewelie,
I have shooting shock like pains in my left arm and left leg, about every 2-10 seconds. They do happen in other areas like my right leg (never my right arm) every now and then. My old LLMD said it was irregular seizure activity.
I had a SPECT showing significant vasculitis. So much so that the radiologist said that it appeared that I had had trauma to my brain. SPECTs and PET scans are the preferred scans for lyme as MRIs and CTs can come back normal. MRIs and CTs only show structure, not function of the brain.
I will try to get together another post with links to good information on vasculitis and SPECT scans. I'm sure you already know the basics. Vasculitis is inflammation of the blood vessels due to infiltration of the vessel walls by white blood cells (your immune system basically attacking yourself).
How were you diagnosed? Did you have a SPECT, PET, or MRI?
Your shooting pains, are they shock like nerve pain? I see a new LLMD on Monday to talk with him in depth about this as this is my primary symptom.
I will get that information together for you here and repost!
jloisu
Posted by Lymetoo (Member # 743) on :
Hi Jewelie! Man, that sounds very painful! Maybe the clindamycin is helping, but not doing the job against the inflammation that the other abx was doing....?? That might explain why it's really bad by the time you're due another round of abx. [whereas it didn't happen before]
You might also be interested in this from Sloan-Kettering's website on mangosteen and inflammation. Mangosteen has helped me tremendously with inflammation. Contact me if you have questions about it.
Thanks for your replys. I feel like I don't quite understand what vasculitis is and how I can get relief from it. I haven't had a SPECT done (In fact I hadn't even heard of one till I read some posts about it). My doctor diagnosed it by my symptoms only and she hasn't explained it much at all.
jloisu, could you please reply to my private post again. I didn't include an important piece of information. Sorry! I appreciate it.
lymetoo, thanks for your link. I will let you know if I have any questions.
Bye, for now
Posted by Somerset (Member # 7534) on :
"Hello my fellow Lymies," Since we are on the topic of vasculitis, has anyone heard of Wegener's Granulomatosis? could it be a coinfection of Lyme? I've been looking for answers for couple of years now, husband has it,almost lost him a couple of times. Nobody seems to know where this disease comes from.If by any chance this is a coinfection,we all must be aware of what this infection can do,it's deadly if not caught in time!!!!!!!!!!!!!! Robin
Posted by Lymetoo (Member # 743) on :
I have Wegener's Granulomatosis. I have been completely off all medication and in remission since 1992 (6 years). This past Fall, I have had severe joint pain and red bumps below my knees. Fearing a recurrence of WG, I promptly went to my doctors. I have now been diagnosed with Erythema Nodosum. My question is are there any known links between WG and Erythema Nodosum?
Doctor's Response: Erythema nodosum is a type of skin inflammation which results in reddish, tender lumps most commonly located in the front of the legs below the knees. The tender lumps, or nodules, of erythema nodosum range in size from 1 to 5 centimeters. The nodules are caused by a special pattern of inflammation in the fatty layer of skin.
Erythema nodosum may occur as an isolated condition or in association with other conditions including medications (sulfa-related drugs, birth control pills, estrogens), strep throat, Cat scratch disease, fungal diseases, infectious mononucleosis, sarcoidosis, Behcet's disease, inflammatory bowel diseases (Crohn's disease and ulcerative colitis), and normal pregnancy.
Erythema nodosum is not considered a manifestation of Wegener's granulomatosis. Nevertheless, Wegener's granulomatosis can cause inflammation, redness, pain, and ulceration areas in the skin of the legs below the knees. This skin inflammation can mimic erythema nodosum. Sometimes a biopsy of the upper and lower layers of skin can be helpful to distinguish between these diagnoses.
Thank you for your question.
Posted by Lymetoo (Member # 743) on :
"Lymetoo", It's Robin, just sent you a private message Please email me at: [email protected] " Thank you Lymetoo," Robin
Posted by jewelie (Member # 897) on :
jloisu, you can email me at [email protected]. Look forward to your response. Thanks, Julie
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