Blood Patch Lyme

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Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 1/3/2018 4:17 PM (GMT -6)   
I've been feeling horrible the last few days. Nausea, brain fog, and fatigue have been horrible. I will be going to a neurosurgeon at Duke within the next couple days regarding the lesion in my midbrain.

Got to thinking. And I may have done something disastrous. As some of you know, I had a lumber punch done while at a clinic in Mexico. At first glance, the fluid did not show any indications of infection. Which is leading them to the possibility of a tumor. So, I had a horrible headache and spinal pain for nearly a week after the procedure. Laying flat would alleviate it. Surgeon said I would need a blood patch.

I had it done. I wasn't thinking about anything other than getting the leak fixed. Now, with the influx of symptoms after the blood patch, I'm wondering if introducing infected blood into my spine was such a grand idea.

As if I didn't have enough to worry about, now this.

mareish
Regular Member


Date Joined Mar 2017
Total Posts : 221
   Posted 1/3/2018 4:23 PM (GMT -6)   
Did they do the blood patch because they thought you had a csf leak? Did they use your blood?

Really sorry you are feeling so poorly and hope your appt with the neurosurgeon goes well.
Quest Elisa Lyme positive 2/2017
Igenex Lyme WB igm positive 3/2017 and July '17
Quest Ehrlichia positive 3/2017 neg. July '17
Igenex Bartonella positive 4/2017 neg. July '17
CD57 30 in 4/2017 12 in July '17

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32609
   Posted 1/3/2018 4:26 PM (GMT -6)   
Sorry to hear you’ve got some new symptoms, Hoagie!

I don’t really know what a blood patch is - just have read it is sometimes needed after a lumbar puncture.
So the blood patch is from a donor and you’re concerned you’ve picked up something with it?

Did it at least stop the headache and spinal pain?


Just wanted to mention that lumbar punctures aren’t reliable for testing to see if you have Lyme and Coinfections (wouldn’t want you to rely on that test)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 1/3/2018 4:36 PM (GMT -6)   
They used my blood for the patch.

Even though they are testing the fluid for Lyme, tyhey are testing for several other things as well.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32609
   Posted 1/3/2018 4:42 PM (GMT -6)   
Hoagie said...
They used my blood for the patch.

Even though they are testing the fluid for Lyme, tyhey are testing for several other things as well.



If it’s your blood - then what’s the issue?
Your CSF would already have whatever your blood has anyway, right?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2108
   Posted 1/3/2018 5:12 PM (GMT -6)   
Hi Hoagie,

Just want to say I hope you either find some answers, or rule some things out when you go to the Neurosurgeon.

I understand you are worried about the blood patch in case you have Lyme and co, you are afraid you have introduced it into another area. but I think if you have Lyme and co , it would already be there like Girlie said.

The increase in symptoms could possibly be from everything you have gone through lately.

You were already in a unstable situation before heading to Mexico and your body and mind has been through so much.
With the lumbar punture, the unknowns, the traveling ...it could have wore you out more.

Hope you get some relief soon from these symptoms and we are here for you.

Please keep us updated about your upcoming visit.

Take care, Jo

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 1/3/2018 5:30 PM (GMT -6)   
Thank you all so much. This has been such a roller coaster ride. Now, that we are thinking it may be a brain tumor, not sure how to feel. I'd love to be here for my wife and kids. I just have to trust God and try to keep it together for now. It's really hard.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32609
   Posted 1/3/2018 7:02 PM (GMT -6)   
Hoagie - try not to think the worst. I know it's difficult....really difficult.

Even if it is a tumor...it could be benign. (you mentioned this) so hang on to that.





take a deep breath...

Don't hesitate to post here. We're all rooting for you....
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Loutucky
Regular Member


Date Joined Nov 2014
Total Posts : 431
   Posted 1/4/2018 6:14 AM (GMT -6)   
Hoagie, I am no doctor but I have demyelinating lesions in my brain and in my cervical spine. I would think that if I had a blood patch with my own blood it would be ok because the diseases I have are already within my central nervous system. I know that because my symptoms are neurological in nature.

I thought you had a MRI of the brain with the neurologist in Fayetteville. I'm sure Duke will do all their own tests but make sure you take the scans you've had previously for comparison.

I know it is hard but please try not to worry to much. Stress is our enemy. I'll be thinking of you.

Post Edited (Loutucky) : 1/4/2018 9:46:43 AM (GMT-7)


1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2437
   Posted 1/4/2018 10:12 AM (GMT -6)   
Hoagie, I don't have anything helpful to add to your questions (sorry), but I just wanted to say that I've been thinking of you and wishing you the very best in figuring this out.... and HEALING!

I am truly sorry you have been struggling so much.
Many healing {{{HUGS}}} sent your way!
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2437
   Posted 1/10/2018 10:20 AM (GMT -6)   
Hoagie - I was thinking of you and wanted to ask if you had an update on how you are doing? Concerned for you....
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/10/2018 11:48 AM (GMT -6)   
I too have wondered how you are doing?

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2437
   Posted 1/17/2018 10:53 AM (GMT -6)   
Bumping again. Hoagie, are you here??
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.
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