posted
First a little history since I have been away from the site for awhile:
1990-2 wks Doxy 5 wks after several bites with rashes 2003-severe neuro sx after many years of illnesses but still able to function. Found LLMD Feb. (been with him ever since but now financial issues prevent frequentcy of visits and various tx I am use to). Sept. CDC positive LD Dx.
2007-April had a stroke
2008-early spring diverticulitis while on abx and about a month later DVT left ovarian vein. Dx with antiphospholipid syndrome (a hypercoagulablestate) started on coumadin therapy.
2009-spring hospitalized with GI bleed/ hematuria. INR was 10.2. Resumed coumadin when INRs stabilized. Abx d/c'd late spring then on Zith and Rifampin for about a month in the fall for Bart. D/c'd because of stomach issues.
That brings us to my story:
For many months extreme fatigue, worsening cognitive problems were my main complaints along with other sx I could deal with. Started having a localized pain in my head a few weeks ago and occassional headaches that weren't too bad. Did not fall or hit head (as far as I know) at any time.
Two weeks ago just not right...even more exhausted even if I did sleep good some days just laid on the couch up to bathroom etc. Pain in head constant now but didn't think much about it because I've had way more pain in the past 7 yrs.
2/12/10-In AM coming down stairs felt faint, lost my balance and fell down 3 steps to carpeted floor landing on side DID NOT pass out or hit head.
11am appt for PT/INR lab test at my PCP office. (for coumadin therapy which for 2 yrs has been all over the board usually have to go 2xwk for testing. Lately it has been too low). This day it was perfect. I remember being very sleepy and just not with the program.
From there I went to drug store to get Valentine stuff. I only remember bits and pieces alot is fill in from people at Dr office. They called me on my cell phone while I was still wandering around the store for over an hr. I had walked out from pcp without giving them my intake sheet or making my appt for my next test. they said the lab tech was concerned that I didn't look well and they wanted me to come back and just talk to the PA for a minute.
I stopped on the way back home, they looked they saw and promptly had an ambulance come and bring me to ER. Among other things my BP was 190/112.
Doc came in and said I couldn't go home because I had bleeding on the brain. I was not expecting that!
Neurosurgeon and neurologist came in Sat AM and said the bleed was small enough that I did not need brain surgery and it seemed to be an old event maybe a week or two. That would correlate with the head pain.
I was there till Mon night. Continued to have very high BP's, killer headaches, balance problems, trouble speaking/thinking. MRI done on Mon. normal (as much as they could see as the hematoma blocked part of the veiw).
I just can't understand how this happened and am a little anxious of it happening again. I also don't understand how I walked around (and drove) with this before having any sx. I wonder if the sx are really a relapse.
I read that this kind of SDH is termed as chronic and can occur with pts on coumadin or alcoholism (because of brain atrophy).
I also read that they check Lyme pts for brain atrophy with spect scans. Sooo...since I am not an alcoholic, but I am a Lyme pt who needs Coumadin this is not a good thing!
I will be calling my LLMD tomorrow. Any input comments info or questions I should be asking will be greatly appreciated.
Thanks!
-------------------- "Courage is the mastery of fear-not the absence of it."-Mark Twain
Still trying hard to be brave...Deb Posts: 82 | From Upstate NY | Registered: Oct 2003
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My grandfather has what I suspect is Lyme (history of tick bite and rash, then years of RA that doesn't respond to treatment, heart problems, neuropathy, etc). Unfortunately, he believes it would be too late to treat even if it were Lyme, and so has not had a blood test, or seen an LLMD.
He has had experience with a subdural hematoma. In his case, he didn't think he'd had any trauma either. Eventually, he decided that a fall he'd had (where he DID NOT hit his head) must have jiggled his brain around enough to cause it.
So- it could be that Lyme patients are susceptible to this without trauma, or just that very little trauma is needed. Or it could be unrelated to Lyme- and just something that happens.
My grandfather did need surgery to relieve the pressure on his brain, but the subdural hematoma has not re-occurred since the surgery. Originally, they were just going to leave it, but it wouldn't stop bleeding, and produced pressure, so they had to operate. It's been close to six months since the surgery now.
I hope you feel better soon, and that this doesn't come back for you either. Unfortunately, I cannot tell you if it is related to Lyme or not, but I hope not. Maybe just keep an eye on how you are feeling, and if other things come up, maybe it is Lyme, but if not, then it probably isn't??
Best of luck,
Nicole
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
If you keep your blood pressure down you should be able to take your coumadin safely. Prayers.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
A friend of my mine just had surgery for a subdural hematoma. Two years ago, she received a positive diagnosis from an institution that has FAILED to diagnose and treat countless Lyme conditions (Lahey Clinic in Burlington, Mass). They gave her doxycycline and at that time did not check for other co-infections. They continue to use inaccurate diagnostic criteria and outdated diagnostic equipment. They continue to provide antibiotics that are ineffective against Borellia, let alone attendant (and probable) coinfections.
Any way, I've always felt that doxy is relative ineffective in eradicating Borrelia. I urge you to get a copy of Dr. Eva Sapi's presentation from the UNH conference:
``Antibiotics and Natural Agents against Borrelia's Cyst and Biofilm Formations''
An excerpt:
`` B. burgdorferi has the ability to make cystic forms both in vivo and in vitro, e.g. when exposed to antibiotics commonly used for treating Lyme borreliosis. This phenomenon, combined with the ability of the cysts to reconvert to normal mobile spirochetes may explain a reactivation of the disease after an illusory cure -and not a ``post Lyme syndrome'' as postulated by other researchers.''
See pages 37 and 37 in her illuminating (pun intended) slides on doxycycline treated Borellia biofilms. It really spells out how persistent these little buggers are in their protected, slimy environments.
When will this nightmare end?
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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