LymeNet Flash: Long-term Flagyl & Vascular/Vasculitis

This is topic Long-term Flagyl & Vascular/Vasculitis in forum Medical Questions at LymeNet Flash.

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Posted by Clint31 (Member # 16420) on :

I have been on flagyl a long time. I have some blood flow/ or what seem to be vascular issues that seem to come and go.

Has anyone experienced this with flagyl?

I think flagyl is the cause. Sometimes my hands and my feet feel asleep/or pins and needles or almost like some blood supply issue or nerve issue. Then the next day or two it goes away.

Other times I have a tender vein in the groin. Just wondering if this has been experienced by anyone on flagyl. I know it is a known issue to sometimes cause vasculitis which "clears up on it's own"

Thanks all and God bless.

Posted by Tincup (Member # 5829) on :

Hey Clint...

Sorry you are experiencing that icky symptom! I can't answer your Flagyl question...

But, I can say Lyme can cause vasculitis on its own, without being on Flagyl, as can Bartonella.

Here is a fairly recent patient question with answers from the top Lyme & TBD treating docs and researchers that may interest you. Has pictures too!

Ask The Experts

https://sites.google.com/site/floridalyme/tick-borne/bartonella-1/bartonella--hand-pain?pli=1

Hope it helps!

[group hug]

Posted by Clint31 (Member # 16420) on :

This sure seems to be what I am experiencing, based on the joint pains, toe and finger pain, and neuropathy.

https://en.wikipedia.org/wiki/Cryoglobulinemia

This is a type of vasculitis. I am very scared.

Posted by Clint31 (Member # 16420) on :

Just some notes to add to this; I don't think it's flagyl causing the vasculitis. I think it's an auto-immune off spin of having lyme and epstein barr for so long.

I have no doubts that this is probably going to be what kills me; as my wife says shes had enough and I am simply making things up.

It's really sad what we sufferers go through no matter how hard we try to fight. I do understand why people give up.

Posted by Tincup (Member # 5829) on :

Got to agree. This sounds right wicked.

I did notice it can be treated by addressing the bacterial and viral causes. That's encouraging!

In my own case- vasculitis- I am treating Bartonella with antibiotics (on/off, mostly off) and supplements. If I am faithful in doing the supplements it does keep the symptoms at a minimal level.

Also cleaned up my diet a bit too- not that it was horrible before, but just to trying to reduce inflammation.

I MISS MY ICE CREAM! [Eek!]

BUT, if I miss a couple of days the supplements that address the inflammation I really suffer.

I AM SO SICK OF TAKING PILLS! [Eek!]

Anyhow...

Might you try the diet approach and perhaps some supplements that will reduce inflammation?

It may not cure it, but it can't hurt and may reduce your symptoms and/or the progression?

As for your wife... well, if they don't GET it, they don't GET it.

Might need to not discuss it with her for a while and see if that is any better or livable?

Might shock her enough to make her suddenly be really nice to you!

[Big Grin]

Posted by Tincup (Member # 5829) on :

Ah ha! Just remembered something.

Coconut oil!

I use it topically because I don't care for the taste. It is an antiviral and antimicrobial.

As it absorbs thru the skin my thought is it gets both TO and into the blood vessels. My theory- no science to support it, though I haven't looked- is it is helping by knocking off the offending microbes.

I herx from it, so something is making that happen.

Anyhow, something to consider.

Here is some reading on it for you.

https://sites.google.com/site/marylandlyme/treatment/coconut-oil

Posted by Clint31 (Member # 16420) on :

What is the diet approach to Vasculitis?

It has seemed to come and go in the last year or two. It's flared badly right now. I am going to see my LLMD who is also internal medicine about it. I have told him about these symptoms before but he just seemed to pass it off- one time my left hand was asleep like it's been countless times and he just Said "your reflexes are slow" and he passed it off. Seems like him and his assistant do know what Vasculitis is but they think Lyme and Epstein Barr can cause mimic symptoms.

Am I dying from this?

Posted by Clint31 (Member # 16420) on :

It seems it is worst in my hands, feet, and left arm and legs. I have also I think experienced it in my left temple and my left heart has had strange pains

Posted by Clint31 (Member # 16420) on :

Is death from Bb induced Vasculitis rare

Posted by Tincup (Member # 5829) on :

I've not heard of any deaths from it Clint. And I'm still kicking!

I think the vasculitis' purpose is to make you more miserable than you thought was possible.

As for your doctor... stand on that little examination bed and tell them you want to discuss it and get help for it!

Vasculitis is vasculitis and no matter the source, so tell them to FIX IT!!!

OK?