posted
ok....it hasn't happened for a few months and
I thought it was getting better. Yesterday, while
I was sitting and resting near the pool, I had
my "brain tremor" again and nearly passed out.
Luckily I was not in the pool or standing.
I became very dizzy, with pain in the top of my
head. My face became numb, I was extremely tired.
My arms and legs felt heavy and numb. But the
numbness "traveled". It was not on one side only.
It seemed to "jump" around.
I have gone to the ER in the past, and will not
go again. They do the same thing every time
without results or questions answered. A waste
of time and money.
I know we are not drs. here. If anyone has
had a similar exp. and did find an answer, I
would love to know how you got to your
conclusion and what your conclusion was.
I am staying put today. I am afraid to drive.
I still have problems with my vision and
feel very shaky.
Thanks for your input.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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I have had MANY episodes like that! I have also had two mini-strokes, which feel very similar. There is one thing that I recently learned through my son.
He had a Mocha panel. It is to check the thickness/stickiness of your blood. I don't know as much about it as I'd like too. My son's test was through the roof!!! The LLMD wanted to start him on heprin shots daily right away until he realized that he was only 14. Right now, we are in the middle of more testing by a hemetologist in Atlanta.
From what I know about this, it does restrict the blood flow and this would include the brain. Restricted blood flow in the brain would certainly explain the symptoms that you've experienced!!! If I were you, I could contact your LLMD and request to have this test done A.S.A.P.!!!
I don't blame you for not wanting to go to the ER; I have the same experience there too!!! But please contact your Dr.!!
Also, where you very hot when this happened??? I know that this doesn't happen to everyone, but I will get very weak, dizzy, have muscle spasms, and sometimes have numbness every time I get too hot!
I've been told that because heat actually kills off some bacteria, that it sometimes causes a mini-herx reaction. I don't know, but I do know that when I am blessed enough to have a good day and go to the river; I have to keep some part of me in the water!! If not, I'm in bed within an hour!!
Until I have all of the results back for my son; him and I take a low dose asprin once a day. I figure it can't hurt as it thins the blood!!
Mrs. Seibert has much more knowledge than I; this has just been my experience, but I am no expert in any way!!
Many prayers,
Janet
Posts: 351 | From Georgia | Registered: Feb 2008
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posted
I know this sounds silly, but what a comfort that
I am not the only one that experiences this.
I am going to call my dr, I will wait anothe 1/2
hour and then call.
I will look into this test. Thank you, I have
never heard of this before.
I also react to heat and especially humidity.
I had many errands yesterday, and it was very
humid. I had just gotten out of the water (I
was to weak to swim - just went in to cool off)
when this happened. Maybe it was a mini herx??
When it has happened in the past, it was not hot.
However, it was when I was fatigued and pushing
to get my chores and errands done.
Thank you for your response, and I appreciate the
prayers too.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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I had never heard of the MOCHA panel -- many LLMD's run an ISAC panel (Immune SYstem Activation of Clotting). Actually both panels are from Hemex lab. If money is an issue then a simple fibrinogen test from Quest or LabCorp can give some indication if hypercoagulation is a problem.
Last time hubby had the ISAC panel run (a year or two ago) I think it was aroun $400 -- don't know the cost of the other panel.
Do a search here for hypercoagulation. Many natural things can be used instead of heparin. Nattokinase, Lumbrokinase, systemic enzymes (such as Wobenzyme or Vitalzyme).
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
thank you - I will look for info on hypercoagulation - I don't think I can process any info right now - just need to lie down
yesterday I took a B complex vitamin for the 1st time - it is probably just a coincidence that this happened a few hours later - any thoughts?
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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I do not have any advice and have not experienced that before.
I hope you get some answers here from people who might be familiar with that. I hope you are feeling better today. Try to take it easy and stay in the a/c.
Hang in there.
-------------------- Junegal Posts: 18 | From East Coast | Registered: May 2008
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Alv
Unregistered
posted
It hapened to me.I feelt after the episodes the bloot clots moving around my body.It was the hyercoagulation.
Warfarin -helped me at the moment.You can take rechstregulat ,wobenzyme ( 10 pills and above) and NATIKONASE -Ref by Dr J S for Clotts.
I used to have them when I did not know what I had ...and after a big HERX.Now I know...I prevent it with keeping my blood thin.
I feel worst in aspirin -cold hands and feet.I rather eat up the fibrins with enzymes ...as just taking aspirins.
THat is my ekspierience.
When I felt was coming I would lie in bed.i know is scary.
I used to go to the ER-Not anymore.......ironilcy by the time they wanted to take my bloot -they used to say...your blood is too thick.Little I knew back than.
When I was in levaquin ...it hapened again ( I was not takign azithromax) ...but now I use azithromax and enzymes that I mentioned -Bio film is less of the problem.Azithr with help with biofilm and enzyme will eat up the fibrins and your blood will be better.
I am not sure if you have bart....But people that have bart /babs have more of that problem.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I have a hard time reading the poem format, but from what I could gather, I wonder if you may have had a reaction to the chlorine.
I know I mention two things often here and I think both could be involved. One: inner ear (vestibular); Two: porphyria reaction.
If I may, a few questions may help determine if you might ask your doctor about either of these.
Sad, too, the ER experiences when I've had similar experiences have caused more harm than good. [edited to add: but, not everything is lyme - I hope you can consult a good doctor as to what is going on. - Geneal's note below is good]
so, as for vestibular stuff (which often goes along with lyme but can have many other causes, too): do you have other kinds of vertigo or balance symptoms?
as for porphyria being a possible player:
- are you sensitive to chemicals? perfumes? cleaning products? Diesel exhaust? chlorine?
- (although alcohol is not used during lyme treatment), are you generally unable to tolerate even a small amount of alcohol?
- do you often have on / off constipation / diarrhea ?
- do you have relatives who were very sensitive to some medicines?
==
there are many more questions for both vestibular and porphyria.
Porphyria (excess porphyrins) can cause a myriad of nervous system symptoms. Patients who herx a lot may have excess porphyrins and too many can cause damage or symptoms such as what you describe.
Charcoal capsules, glucose (if an emergency), beta carotene and some other specific endotoxin elimination action can decrease that.
It's a very complex subject and I can't elaborate right now. If you think you want to hear more, let me know and I'll try to explain further or come back with links.
-
[ 02. July 2008, 05:43 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
Transient Ischemic Attacks or TIA's are mini-strokes.
Usually caused by a clot that initially gets stuck somewhere in the brain and then moves on.
It can cause stroke symptoms (paralysis usually one side vs. the other, speech impairments, visual disturbances, etc).
However, these usually "pass".
It is important to have this ruled out whether caused by hypercoagulation issues, high blood pressure, etc.
As 40% of people who experience TIA's go on to develop a fully devestating stroke.
Please consult a doctor regarding this.
My cardiologist put me on two aspirin a day for my coagulation issues.
Please err on the side of caution and talk to your LLMD about it.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I just wanted to say thank you for your replys.
I have read them several times, but I am having
trouble with retaining info right now. I just
wanted to let you know how much I appreciate
the responses.
Keebler, I think I need to understand what you
are saying better. I hope to be in better shape
tomorrow, I slept almost all afternoon. Do you
mind if I pm you tomorrow for further explanation?
I haven't had any alcohol in a very long time.
But on Monday evening, I had maybe all of 3 oz
of wine with dinner. I am sensitive to perfumes
and strong cleaners.
Geneal, I have read about TIA and it scared the
heck out of me. My llmd wants me to have a
consult with a cardiologist - I need to find one.
Anyone know of a good one in Northern NJ? I
think I will post in seeking dr.
Thank you all again. I think I better go lie
down.
Best wishes to all of you, Cathy
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Cathy,
Your LLMD or general practioner should be able to recommend a good cardiologist and refer you quickly if need be. No reason you should have to hunt for one. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8962 | From Illinois | Registered: Aug 2004
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
I started experiencing the same types of symptoms before i found out i had lyme.
After 6 months of going to the er and them telling me it was all panic attacks and anxiety related, they finally did an MRI and found a meningioma brain tumor,...2 weeks b4 my scheduled surgery to have it removed I got my test results back from one of many visits to the er and i was positve for LYME.
4 yrs later I am still having these symptoms after the tumor removal which led me to look further into LYME and seeing Dr.C in Springfield.
My neurologist says they sound like Jacksonian seizures....you might check into it. There are certainly all kinds of diff types of seziures, and It definitely warrants looking into by a professsional.
I do hope you find some releif and help soon as I know it is a scary thing to have happen when we dont have control over what our bodies do.
Good luck to you.
-------------------- AND NOW THESE THREE REMAIN: FAITH,HOPE,AND LOVE. BUT THE GREATEST OF THESE IS LOVE. Posts: 35 | From Springfield, Mo. | Registered: Feb 2005
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
May I also suggest opening your blood vessels a little.
CoQ10 and a Nitric Oxide (NO2) booster help me quite bit.
You sound like me when my immune system goes into overload when I am exposed to things like toxins....mold and chemicals....
Just a thought...sticky blood..which test positive for....heparin has been pullled from the market (temporarily) so I did the above and it worked for me.
Warning though...higher l-Argine (used to raise NO2) can cause a rise in latant viral infections.
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi njlymemom,
I have had similar symptoms also, it sure is scary, so I know how you feel.
For me it effects my vision, I break out in a sweat all over, feel nauseous and I pray I am not gonna pass out. Sometimes I have completely passed out, but more times I come very close to passing out but don't.
I don't know exactly what causes it for me, I have had my heart checked and that is fine. So I guess it's a Lyme symptom of sorts.
I would get your heart checked tho just to be on the safe side.
Sorry I could not be of more help, but you are not alone. Hope it gets better for you, hang in there and keep us posted.
-------------------- God Bless You! Everything..is just my opinion. Posts: 6639 | From Michigan | Registered: Jun 2001
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posted
I can't really tell from your post how long the incident lasted, but another possibility is a "silent migraine," which can look like a stroke or a slow seizure.
It's all aura, basically, with visual disturbances and other migraine-like features but without the headache.
I mention this because I was reading about it recently and also because you mentioned humidity and alcohol, both of which could be migraine triggers.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
I do get "silent migraines" which for me is a visual disturbance with some dizziness, without the pain. Sometimes the visual disturbances would clear up and then the migraine pain would start within an hour later.
This is different. The wine I had was 24 hours prior and only about 3 oz. This symptom started happening last fall before I started the Rifampin. The addition' of the rifampin seemed to keep this from happening.
What I forgot to mention is that a 1.5 year ago I had my 1st spect scan done. It showed sever encephalitis and vasculitis. The humidity affects other parts of my body, why not my head? I don't really know but need to find out.
We had a few friends over yesterday and I really over did it considering I was not feeling well to begin with. I try not to live like a hermit, but as many here understand what it is like to pay for a simple day of entertaining a few friends.
It is a comfort just getting all this feedback. Thank you,
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
If the Rifampin is helping, it sure sounds like a bartonella neurological problem.
I've had really weird seizure episodes from the bart. I have what I think are actual myoclonic seizures, but then sometimes I have these episodes that are more like temporary paralysis, where I cannot move or speak.
I also have feelings that my brain is swelling and my head is going to pop open: intense pressure on one side of my head.
A friend of mine with migraines told me the other day that a migraine is essentially a slow seizure. It sounds as if you are having some kind of seizure-like episode, probably related to bart.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
If hypercoagulation is a issue you might want to try a product called Bolouke from Researched Nutrtionals.
Our LLMD recommended it for my daughter, whose IV port keeps clotting. We haven't gotten it yet, but we're going to give it a try.
My daughter faints several times a day. She is bedridden, but she will get a blank gaze in her eyes and fall over periodically, especially later in the day. She is only "out" for a moment. She has fallen out of bed several times, but luckily not hurt herself, although she does keep pulling the feeding tube in her nose out when she falls.
She spent 2 weeks at UCLA hospital and they said nothing was wrong neurologically.
Seems like there may be a link between the hypercoagulation and fainting.
It's scary to watch, I'm sorry you're going through such a hard time.
Marla
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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posted
I had an intramuscular B12 shot make my lips feel like they were buzzing and going numb. I also felt anxiety and somewhat confused. This happened in a doctor's office so they gave me benadryl thinking it was most likely an allergic reaction. The benadryl worked.
Maybe you're allergic to B vitamins or a preservative in them?
Posts: 925 | From California | Registered: Sep 2004
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tailz
Unregistered
posted
That happens to me whenever I am the right distance from a cell phone tower and a cell phone in use.
You may be electrosensitive like I am.
IP: Logged |
posted
Lymecf - my guess is that it is bart related too.
if I miss the rifampin or biaxin (even just one dose )
the head pressure is just so intense. I know how
you feel. It does feel like your brain in
bursting, and swelling is certainly possible.
MarlaSue - I need to look into hypercoagulation
-someone else also mentioned this. I remembered
after reading this how difficult it has been
for them to draw blood lately. Another clue?
I am so sorry to hear what your daughter is
going through. How terrible, please know that
she is in my thoughts and prayers. Has anyone
considered silent seizures in her case? My
daughter was having episodes, very minor in
comparison to what your daughter is going
through. Bart treatment has been a turning point
for her.
DolphinLady - I don't know if it is the B vitamin
that sent me on this crazy path. I am afraid to
take another. I bought them at the health food
store so that I would not have any strange
fillers or additives in them. I will reread the
package. Thank you for posting.
tailz - I don't know anything about this subject.
But I can tell you that I don't think it fits
here. We live in a rural county. I have no
cell towers near us. It is actually a problem
for our police force.
Hi Teresa, I do know about the affects of an
overdose with the B's and the symptoms listed.
When they thought I had MS many moons ago this
was discussed and ruled out. I had B shots
a few years ago with another llmd, they did
not help me or give me a reaction. Thanks for
the post, though. There is so much to consider.
Beverly, thank you for your support. I hope that
you find an answer too. It is so frightening
and it happened without much warning.
Shellbabe - you have been through so much.
Surgery for a brain tumor! And lyme to boot!
It sounds like it was not the tumor that was
giving you the symptom. Maybe this lyme symptom
actually helped in a way, tumors can grow
silently........we have someone locally who
is now going through this. Have you been getting
any help for the seizure like symptom?
If it is a seizure caused by lyme or a co
infection is it still treated with a seizure
med? Or do you just treat the TBD?
Thank you all for being so supportive. I have
a few avenues to pursue. Now I need to do
something about it and stop feeling sorry for
myself.
Good luck to all of you -
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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