I'm so sick, please forgive me if I don't reply soon. I'm very thankful for any and all input.
My very worst symptom is extreme chest pressure/pain, which I have always felt to be vascular/heart pain.
I had a PICC placed, and two x-Rays, a CT scan, and and echo showed that the tip of the PICC was correctly placed in the superior vena cava. Nevertheless, the PICC *hurt* my chest so badly! It greatly exacerbated my chest pressure/pain, and was making me dry-heave and vomit it was so bad.
After a week I couldn't stand it anymore and had the PICC removed. I have a midline now, which had been great.
Has anyone else had a similar PICC experience? All the doctors say PICCs don't do that. I really think I have very bad vasculitis, hoping it's not auto-immune.
Thanks! Sam
Posted by SacredHeart (Member # 44733) on :
Maybe it was hitting a nerve?
Posted by Keebler (Member # 12673) on :
- Lyme causes so much inflammation and pain all throughout the body that your experience seems entirely understandable. Sorry you had to go through that. -
Posted by Nula (Member # 38409) on :
SickSam,
I just responded to one of your older posts, asking you how you were doing. Then I read this post ...
I'm sorry to hear you're feeling so badly. It's such a scary, scary disease.
Since you think you may have vasculitis: Have you been diagnosed with Babesia?
Babesia infects the endothelial cells (so does Bartonella).
I know you may be too sick to read, but if you can, I suggest you read Stephen Buhner's latest book on Babesia (published this year).
[ 07-19-2015, 01:06 PM: Message edited by: Nula ]
Posted by poppy (Member # 5355) on :
Vasculitis is also associated with lyme.
And the definition of vasculitis is inflammation of the blood vessels. Comes in a great variety of forms apparently, which have long medical names. Said to be autoimmune, maybe, they don't know cause.
As we know all too well, inflammation can be a result of lyme and causes its own problems. Lyme can produce a number of autoimmune markers.
Don't know what caused your picc problem, but if you are getting effective treatment now with the new line, this issue should improve.
Posted by SickSam (Member # 45330) on :
Thanks for the input everyone. I figure I either have an autoimmune vasculitis or something that infects endothelial cells. I didn't realize Babesia infects endothelial cells too!
As far as treatment, I just don't know if anything is working. I'm on 2 rifampin (for 3 months), 4g rocephin (1 month so far), and 4 doxy (2 months) right now. I don't feel like I'm herxing, just keep getting worse at my same rate. I'm not having trouble tolerating the abx, which makes me wonder if they are killing anything.
My LLMD had a small accident and had to postpone my appointment another month. It's already been 2 months since I saw him last.
I've been on Bactrim, Zithromax, Cefzil, and Malarone previously too. I once credited Bactrim with giving me part of my life back for a short time, but now I'm not sure. I had trouble tolerating Cefzil the first couple of weeks I tried, but no trouble whatsoever when I tried again a month later.
Since I'm not herxing and not getting better, only slowly getting worse, I just don't know...
Posted by poppy (Member # 5355) on :
Are you sure that getting slowly worse is not herxing? Just wondering.
Sometimes when people say they are not responding to treatment, it is because they haven't been on long enough or bartonella is the biggest issue. Since you are on rifampin, you are apparently being treated for bart also.
Well, hoping that time will do something better for you or your doc will continue to find ways to help. Best wishes to you.
Posted by Nula (Member # 38409) on :
Sam,
What are your main symptoms? Other than the chest pressure/pain?
Posted by SickSam (Member # 45330) on :
Extreme difficulty breathing, whole body on fire, pots, liver hurts and burns now, kidneys hurt, pulsatile tinnitus. Now I'm dry-heaving because of the chest pressure/pain. The chest is by far my worst problem.
Posted by Nula (Member # 38409) on :
Extreme difficulty breathing, whole body on fire, and chest pressure/pain are/were babesia symptoms for me. I had massive chest pain before treatment.
You're on rifampin (which is usually used for Bartonella, but I've read - can't remember where - that it can be active against babesia, too).
The rocephin and the doxy are mainly for Lyme (though doxy has been used for malaria, so may help with Babesia).
If you think Bactrim may have helped that points to Babesia and Bartonella.
Obviously I'm not a doctor, but I think you need to treat Babesia - again. (I know you used Malarone).
Malarone didn't help me (I have Babesia duncani). In fact, I'm now using various herbal antibiotics/anti-babesial herbs as my gut gave up on me.
You might just be on the wrong combo.
What does your LLMD say about Babesia?
Your kidney and liver pain worries me. Rocephin can be tough on the liver. Are you taking any liver/kidney support?
Posted by Nula (Member # 38409) on :
I also think you would need to protect your endothelial cells (see Stephen Buhner's Babesia book).
Can you add herbs for Babesia? Cryptolepis? Sida acuta?
According to Buhner, Sida acuta is strongly protective or red blood cells.
Another herb in Buhner's babesia protocol, Salvia miltiorrhiza, he calls a "potent anticoagulant and a vascular normalizer".
Posted by SickSam (Member # 45330) on :
I think Bartonella is probably my biggest issue, I think that's what my doc said too. I tested positive for RMSF and Brucellosis too, so they fit in there somewhere I guess. Forgot to mention my moderate-to-severe muscle twitching.
Bactrim made me significantly better in two or three weeks, and that was by itself only 1 a day. Nothing has done that for me since.
My liver and kidneys started hurting months ago even on hardly any drugs. I'm sure it's just vasculitis in them. I have a CMP every week and everything is always fine. I do take milk thistle and nac.
Posted by Nula (Member # 38409) on :
Oh, that's different then ... The kidney/liver issue sounds infection- rather than drug-related.
Can you get back on Bactrim?
Why did you stop taking it?
Posted by Lymetoo (Member # 743) on :
So they've checked out your heart completely?
Posted by SickSam (Member # 45330) on :
Yeah, but my last echo about 6 weeks ago showed that my mitral valve has thickened and that I've developed moderately elevated pulmonary artery pressure.
My cardiologist doesn't believe in Lyme (my PCP had ordered the echo) and said we'd repeat the test in 3 months and see if it's still changing and progressing. Problem is that I'd like to live those three months! So the repeat echo is in about 6 weeks. Other than being a non-believer, he's one of the best cardiologists around.
I faxed the results to my current Lyme doc and talked to his nurse about it, but they said to follow up with my cardiologist. I'm sure they never even discussed the results with my doc.
Posted by SickSam (Member # 45330) on :
I stopped Bactrim because I had been on it for 6 months or so. Doc thought we needed to change things up, but I loved Bactrim. Didn't want to create resistance either though. Hope I didn't.
Posted by poppy (Member # 5355) on :
Well, read the side effects of bactrim. That is a drug not to be used longterm. Possibly that is why your doc took you off of it after six months.
Posted by Lymetoo (Member # 743) on :
Your cardiologist doesn't have to believe in Lyme .. he just has to take care of you. You may make a believer out of him by default!
I'm glad you feel you have a good one.
Posted by SickSam (Member # 45330) on :
Oh, believe me, I read the side effects on everything and cringe anytime I take something new. I was scared I'd be a lucky one with a sulfa allergy. My aunt has a sulfa allergy.
The first Lyme doc I saw wrote me a prescription for Bactrim with 11 refills, so I guess he had planned on me being on it for an additional year. This was after I had already been on it for 3 months for prostatitis.
Hope my cardiologist becomes a believer Posted by Carmen (Member # 42391) on :
if your chest is still hurting you better get that picc line checked. they can cause severe infections. I would not delay.
MRSA in a picc line does occur and with your history of antibiotic use it would be wise to have it looked at soon.
Posted by SickSam (Member # 45330) on :
I had the picc removed, couldn't take the exacerbated pain. I have a midline now which works great.
Posted by bluelyme (Member # 47170) on :
Bactrim gave me vasculitis i believe hurt my chest alot too @sicsam how are you doing what did cardiologist say/do?
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