posted
Have recently developed sudden neuro symptoms, and family doctor suspects a stroke.
Last few weeks falling backwards when standing, last few months terrible pins and needlds in feet and hands, burning feet and hands, plus shooting pains, and increasingly numb feet.
However, 3 days ago, notices sudden central and peripheral loss of vision, no one-sided weakness, but short-lived confusion.
Attended ER, different drs different ideas, TIA, stroke? Family doctor thought ?meds interacting and causing symptoms. MRI due in 2 days.
LLMD curretnly away, for a further 6 days. 3 years ago, +ve for Lyme and very strong for Bartonella. Bart was treated, but stopped Levo 1 year ago.
Last dose of abx (Amoxicillin, Augmentin, Azithromycin and Metronidazole) taken 36 hours ago (as family doctor thought they may be confusing the symptom picture for the neurologist - to be seen also in 2 days time) Since then burning in hands and feet and pins and needles slightly improved, although temp slowly increasing, maybe my immune system is fighting Bart by itself now?? Or maybe Borrelia is coming back.
I wonder which is the greater risk - stay off all abx and see of symptoms improve, or as temparture is going up (101.3), ?restart Amoxi, Augmentin, Azith and Metronidazole [Was on all these meds when symptoms developed - ??Bartonella mimicking a stroke]
Worried about staying off meds while getting an MRI, which can increase blood flow.
Anyone else similar symptoms or any ideas?
[ 02-23-2010, 03:10 PM: Message edited by: alice.blank ]
Posts: 17 | From Australia | Registered: Aug 2008
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posted
I see you are not in the United States. A SPECT scan would probably tell you a lot more than an MRI would but doubt if you have access to that test.
Make sure the docs test for hypercoagulation.
Very hard to tell the difference between mild encephalopathy and a stroke.
The pins and needles feeling in your feet could be from either bart or from neuropathy. The flagyl (metronidazole) can cause that as a side effect. A neurologist should be able to tell if you do have neuropathy.
The zithromax has a very long half life. If you really think you should restart meds I would only restart the amoxicillin and augmentin.
If your temp does not go too high I would probably try to stay off meds at least until you see the neurologist.
Please let us know how your test and appointment go.
Best wishes.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Re: "Last few weeks falling backwards when standing"
The azithromycin can cause inner and middle ear problems. That can certain cause falling and intense waves of disorientation. You may need to switch to a different abx if the zith troubles your balance.
I also had this problem when I've tried taking Metronidazole - it just messes with my whole inner ear (vestibular system) and I pass out more than usual. But my ears are really kaput.
Do you have any ringing in your ears or sensitivity to sounds? If so, that is also a sign that zith is stressing ears.
Have you noticed any other changes in hearing at all? If so, again, zith may not be the one for you.
Are you taking some good liver support supplements? That is very important when taking zith as the liver support can also help protect ears by helping the liver to keep the toxin level down as much as possible. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Cholesterol, Fibrinogen and BP all good, although quite high family risk.
Temp settled at 38.5 (101.3)
Great advice about meds.
Thanks so much Bea for your best wishes
Keebler - began Metronidazole mid-December, and yes, increased vertigo on descending stairs.
Falling backwards has been happening with no vertigo or swimming feelings - feel steady, but suddenly fall backwards and just manage to catch myself (but not mugs of hot drinks)
No Tinnitus, but huge sound sensitivy since first ill 20 years ago (only diagnosed 2 1/2 years ago).
Had forgotten liver support, so thanks, will start again.
Been on Zith now for 8 months, no other hearing or ear changes.
Maybe Metro is the most likely cause.
Really helpful also,
Thanks
Alice
Posts: 17 | From Australia | Registered: Aug 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Falling suddenly (with or without a vertigo kind of warning) can be Tumarkin's otolithic crisis, an inner ear thing. It can also be a sort of drop attack (either inner &/or some level of momentary seizure). Occurs with lyme sometimes, too. Or a sudden drop in blood pressure (NMH - neurally mediated hypotension).
And, adrenal exhaustion can also be part of this as could low blood sugar. The metro. might be contributing so that might be first determined.
Glad the zith seems to be kind to you. (For many, zith clobbers their inner ear. For others, they can sail through). Still, be sure to keep up your liver support (like Milk Thistle). It's very important to protect your liver when taking zith as that also helps to protect the ears.
Still, this can get better and it should soon. Good luck. -
[ 02-18-2010, 05:41 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
A TIA won't be seen on a MRI or Cat scan.
Only a stroke and not always depending on the size.
I've had balance issues as one of my Lyme symptoms.
I felt like I was leaning to the left all the time.
I compensated for it all day long and boy was that tiring.
I switched from zith to biaxin due to ear ringing.
Keep us posted on your results please.
Unusual to only have visual changes with a stroke unless
The stroke occurred only along the visual cortex.
No speech or language difficulties?
Drooping of one eye lid or one side of face?
Weakness on one side vs the other?
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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The good news is the symptoms are slowly improving. I still have large areas of ``blindness'' on one side of my visual field, but the area is smaller now than it was days ago and somehow the blindness is less blind (sorry, I can't think how to explain that better).
The soles of both my feet are still almost completely numb but with a slight recovery, but the tops of both feet are now not numb but agony to touch. My hands have now regained feeling, with only minor pins and needles.
Most of the confusion went quickly, but I am still much slower than normal, e.g. telling the time or remembering what schools etc I attended. I am not falling over any more - hooray!
It seems like all this is improving since I stopped all antibiotics; my best guess is it was the &*^!!@ Flagyl! But I really don't know I had been on Flagyl 1200mg per day for 13 weeks and had begun getting really bad shooting pains by week 8 , but I thought I had to just live through it. How stupid was I! I didn't know my doctor should have begun me pulsing after 8 weeks.
I'll listen more to my body from now on - it's just so hard to tell what's what when symptoms have been fluctuating for years.
The MRI was looked at briefly by the neurologist who said it was normal - that's great, no stroke. But he spent the entire consultation lecturing me about Lyme Disease being 100% psychiatric illness, and has written to my family doctor suggesting treatment by a psychiatrist!
I should have been prepared for that as I read this forum often, but I still left his office v. upset and despairing. And I'm just ``recovering'' emotionally now. He refused to check for any neuropathy, so I'm having to assess my improvement myself (my LLMD is an 8 hour drive away; he consults now by phone).
BTW, all my blood counts were normal - no LFT problems. Also, I was supplementing with all B Vits (blood levels of 3, 6 and 12 were briefly elevated, but now back to normal)
Now I'm just hoping my vision and self-diagnosed neuropathy get completely better. Any advice about what might help? I am taking Omega 3,6, & 9.
The &*^!!@ Flagyl thread came just too late for me but it`s really helpful info anyway.
(Geneal, I had no speech difficulties or weak side of my face or body. Thanks for Hugs)
Posts: 17 | From Australia | Registered: Aug 2008
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posted
That doctor is really bad to say that Lyme is psychiatric!! How stupid is he!!?
B12 is supposed to help neurological/nerve damage.
Shots would be the best.
Glad you are getting better!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
honey, it could all be just a terrible herx.
been known to happen.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Yeah, I tend to side w/Randibear on this one. Sounds like a tremendous herx.
I have had all the neuro pain you describe and have been unable to focus or walk during one of the meanest herxes I ever experienced. But no stroke, all attributed to herxing too hard.
If it was a mainstream Md that told you this, they don't even begin to understand Lyme let alone that herxing really exists.
Flagyl caused too much neuropathy that was out of control, I was advised to stop it shortly after starting. One mean drug for me, but other's like it. We are all different in our response.
Amoxicillin 4.5g daily + Augmentin 1875mg daily + Azith 1g daily + Flagyl, began 1200mg daily up to 1800mg daily (for 13 weeks)
I have had some astonishing periods of recovery during this time, especially given how low my starting point was.
I was off a cyst-buster for 5 months before beginning this round of Flagyl, and I felt I was relapsing the whole time.
I really appreciate your comments and hope to get back to something like normal soon.
Posts: 17 | From Australia | Registered: Aug 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I too believe it may be herx. I ran fevers twice with meds. Stopped med a couple days-fever went
away. Started back meds and was fine. I appear to cycle like this.
-------------------- 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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randibear
Honored Contributor (10K+ posts)
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posted
wait until you start seeing things like i did!!! scared the crap out of me.
i was in bed one night and looked over and saw this spectre of death, complete with hood and scythe.
then one night the ceiling started rolling like waves.
and the other night i looked over and mike had big scorpions crawling all over him.
oh yeah, fun time -- herx!!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Hmm, I thought I knew what a herx felt like because I've been treating non-stop for 2 1/2 years, and some of that at what I thought were pretty hard-hitting combos. Whatever it is, it's going slowly, but really, really slowly.
I've been off all my meds now for 8 days, and today I woke up with a horrible Lymey feeling, like I used to get before I started treatment. Oh no, I guess I'll have to wait and see what happens. Sigh.
Randibear - that sounds horrible. I did hallucinate a few times when I first began getting really ill, but always when I had insanely high temperatures, and nothing quite so scary as that.
Thanks, Alice
Posts: 17 | From Australia | Registered: Aug 2008
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posted
Thanks as well Lymebytes, this is my 2nd time on Flagyl. 1st time I lasted 3 weeks, this time 13 weeks, but maybe I should have given up earlier instead of thinking I needed to tolerate anything in order to get better.
Alice
Posts: 17 | From Australia | Registered: Aug 2008
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