feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
My MRA showed vasculitis and at first my doctor did not want to treat until I was evluated by a Neuro.
However, he called yesterday and said that based on my MRA results he wants to order 6 weeks of IV Rocephin.
I have not been treated with any antibiotics yet. My main symptoms right now are head pressure, headaches, spatial judgement difficulty. Severe anxiety.
I am totally scared about all of this! My head feels so strange now that I can't imagine having to go through having it feel worse while herxing.
Is Rocephrin tough to take in general?
Thank you
Posts: 3975 | From usa | Registered: Aug 2007
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CaliforniaLyme
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YAY!*)*!)! !*!*)!*)!)!!
IV Rocepihn is one of the easiest antibiotics in terms of side effects- it is a very gentle drug- gentle on GI- gnetle in general*)!*)! It saved my life- it is THE best drug for neuro Lyme IMo-
Best wishes, Sarah
-------------------- 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
If you need IV Rocephin, then it is great that your doctor wants to give it to you. It is a scary thing to contemplate. I think I would have been pretty taken back if they wanted to give that to me as my first drug.
So, I understand your hesitancy.
I had IV Rocephin for 5 months this year, the PICC line was in for 6 months. For me, the whole routine was difficult emotionally and physically. BUT - worth it. I have heard many people say it is the best for neuro lyme and it certainly cleared many of those symptoms for me (brain fog, concentration, clear thinking, short term memory, buzzing).
It was difficult because I am working full time and the infusion took about 1 hour of time every night. I was also trying to do detox (hot baths too), and all of that was time consuming in my work schedule. I didn't have anyone to help with household things during this time.
Your infusion time could be short, just for me, I got dizzy and headachy if I infused too quickly.
My doctor used a Home health care/pharmacy company who arranged everything. They were very professional and they knew what they were doing. I had the PICC placed in a hospital Cath. lab (highly recommended) and it was done well, never had problems with it except when I used that arm too much, and that was just minor (could not draw blood through it).
I would recommend that you talk to your doctor about how they will go about having this done. The more information you get, the better you will feel. Hang in there, the initial shock it still there. The more you talk about it, the better it will get.
Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thank you Sarah and Robin.
My Doctor is setting up a consult w/ a surgeon so that does make me feel better.
I do need IV Rocephin. I have some very serious vasculitis going on. I PubMed serched Lyme and Vasci;itis and success has been achieved w/IV. in clearing the inflamation of the blood vessels.
I am confident in his assessment. I am a very high strung individual as it is and find it difficult to process all of this.
This is way more serious (Lyme) than we are led to believe. I never imagined the complications until I was diagnosed. Truly a travesty.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Rhonda, I will tell you something weird!!!
Pre-IV Rocephin my whole life I was a high strung individual too, just anxious all the time. I had 2 things go away on IV Rocpehin that existed pre-Lyme- my lifelong fear of heights- and this generalized anxiety (never diagnosed as such but I always FELT it). On IV Rocephin my brain felt clearer than it ever has in my life.
I used to not share this because it sounds crazy- but I have met a few people who have had similar experiences now on Iv!!! So who knows what will happen with you*)!*)!*)*!
It took away all my Lyme symptoms, too*)!)*)!! But it did more than that*)!*)*! It makes me believe I really did have Lyme a long, long time before the last tick bite... When I was 12 in Wisconsin I got a tick bite on the head- and after that got mono- and after that "suspected lupus" that went away with abx- so I think I have had it much of my life before the obvious tick bite and rash- ANYWAY, I wish you the best!!
This one guy I know told me "Before IV Rocepihn I was a real pr*!k- it changed my personality." He had ALWAYS been irritable by nature he thought and then got obviously ill with a tick bite- but he, too, on IV Rocephin- felt a shift in core personality traits!!! For the better- he too now believes he was sick long before- he is a nice, mellow guy now!!!
ANYWAY, I really was "very sensitive" or "highly strung" pre-IV Rocephin. This ex-housemate of mine I hadn't seen since IV Rocepihn met me on the street once and freaked out, "But you're like a completely different PERSON- your ENERGY is different- I don't understand, I've never FELT someone change so much!"
Best wishes, Sarah
-------------------- 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
Frequent Contributor (1K+ posts)
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posted
Sarah,
I am sitting here crying now after reading your post.
Thank you for bringing some hope and light into my day. I pray that I have the same response w/ rocephin as you have experienced and also the others you have mentioned.
Right now I am having trouble getting to square one... PICC line placed. My Lyme doctor is Downstate and I live in rural Northern MI.
My Primary Care Doc here is trying to work w/lyme doc to coordinate having line placed up here so that I don't have to make the 4 1/2 hour drive.
thank you for your support and enlightening story.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
You're welcome- wow, that IS a long drive!!!
If you get a mid line you don't need a portable X ray unit but if you get a real picc that goes up your shouler you need to arrange for a mobile x ray unit to take an x ray after placement to be safe. I had to do that, cost $500 8 years ago- and was fine*)!!!
Even my mother said re pre & post Rocephin it is like I am a different person from long before clear infection with Lyme. Weird. And it saved my life, got rid of all my pain- didn't start kicking in until month 7 but when it did it was little miracles every day. 9 months in all, worth every penny- and it is MUCH cheaper now because Rocephin went off patent and there are generics!!!
It got rid of my fibromyalgia, my CFS, my MCS, my TMJ, my RLS, and my neuro descent into heck. I am 100% symptom free today and maintained my gains after I got off Rocepihn by switching to orals. I am still on orals because I am breastfeeding...
Anyway, let us know what happens!!! I hope it goes well for you!!! Get prescription EMLA cream for the insertion site from your doc- it helps to numb the area so it doesn't hurt so much!!! It only takes half a minute to go in.
I was really squeamish re-IV and now I'm not. You get used to it quickly- the first day or two your body feels a bit achey (for most of us) as your body gets used to the line- and you get over being afraid to move in your sleep and stuff!!
Learn to flush your own line if you can!! It is easy- My line used to back up every morning because I'd move in my sleep...
Anywayz, there are lots of us on here with IV experience and we will all do our best to help out if we can I am sure- Best wishes, Sincerely, Sarah
-------------------- 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
Frequent Contributor (1K+ posts)
Member # 12770
posted
It's a go for line placement on Monday at 11:00 . Thank you for all of the advice, suggestions, encouragement.
posted
Yes, to the probiotics! I've taken them continually even while being off abx for the past 3 yrs. I think yeast is something I'll always be fighting.
I do hope you get some relief from the Rocephin!!!!
BTW, what is an MRA?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Don't stress about the Rocephin. It really will be ok. Picc lines are no biggie, and I think the anxiety before having them is worse than the actual line. I've had complications due to my veins being just plain weird, but even with that added variable, I'm glad I'm on an IV.
I understand about the neuro symptoms, but keep hope that you will get better. I just got my SPECT scan results that shows many areas of brain damage, and the findings state that I have Lyme Encephalitis. The cool thing though is that since I've started Rocephin (21 days ago) I haven't had the feeling like my body is dying. My herxes have been minimal, and I feel like I'm on the mend.
If you are really freaked out by the picc line process, see if your doc will give you a xanax. Also, drinking lots of water the night before, and morning of the placement will make your veins nice and big. This may help the line go in place easier.
I have found that this board has really helped me in navigating my treatment with an informed perspective. Any questions about your picc line, rocephin, and the whole gambit of Lyme can be answered here by people that care.
You'll be in my thoughts on Monday morning!
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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How did you get the doctor to order a MRA, was it whole body? What are your symptoms? Thanks.
Posts: 31 | From USA | Registered: Mar 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hi Everyone,
First off a MRA is a test that uses the MRI apparatus (machine). It differs from the MRI in that it shows the brains blood vessels as opposed to structure.
My MRI was NORMAL according to the reading radiologist. However, when I went to ID Doctor, he was concerned w/ something that he might have seen at the brain stem.
When I had the MRA it was found that I have Cerebral Vasculitis (inflamation of the vessels). I really do wonder how many more of us would show vasculitis if given a MRA. I really don't see many posts about MRA's , just MRI's.
I am scheduled for a SPECT scan and I am sure that it will show hyperprofusion as a result of the vasculitis.
I am not sure that a MRA can be done on any other part of the body, or if it is logical. Perhaps DAvid might have some input here.
Thank you Mountaingirl for the support and inspiration. Lymetoo and Daise as well.
Polaris, My Id doc ordered a MRA, SPECT, 24 hr. heavy metal urine test, and 24 blood tests on my first appt. I did not suggest anything. I think that he ordered a MRA because of what he believed that he saw on my "normal" MRI. I had never even heard of a MRA before.
Thank you all for encouragement, support, etc. Without all of you I'd be an even bigger mess!
---------------- Also, drinking lots of water the night before, and morning of the placement will make your veins nice and big. This may help the line go in place easier. ----------------
Oh Yes--I agree! And anytime you get a shot.
CaliforniaLyme said that it can back up: you may see your blood backing up in the line. Oh yes. Ask the nurse. No need to panic.
Remember: IDSA wants people to be scared to death of a PICC line.
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rhonda
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never even heard of a MRA before.![[Wink]](wink.gif)
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