P.S. Are you on any seizure meds? Have you ever had an EEG?
Posted by njlymemom (Member # 15088) on :
EEG is - normal
Evoked potentials - normal
catscan - normal
not on seizure meds
i will check this site out
thanks
Posted by scared08 (Member # 14695) on :
Hi CB,
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
Posted by njlymemom (Member # 15088) on :
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.
Posted by seibertneurolyme (Member # 6416) on :
Scared gave you some good advice.
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
Posted by njlymemom (Member # 15088) on :
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?
Posted by Junegal (Member # 15533) on :
Wow CB, I am sorry this happened.
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.
Posted by Alv (Member # 15192) on :
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.
I do have all of them.
Posted by Keebler (Member # 12673) on :
-
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 ]
Posted by Geneal (Member # 10375) on :
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
Posted by njlymemom (Member # 15088) on :
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
Posted by hiker53 (Member # 6046) on :
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
Posted by njlymemom (Member # 15088) on :
that is what i thought, but he said he did
not know of one in our area
he understands that driving long distances
is difficult for me
i just felt very abandoned ....finally my
husband offered to call the llmd's office
back today....let's see if it gets done
i was an emotional mess yesterday, this is
the only symptom that does this to me
i don't have the time to feel self pity
Posted by shellbabe (Member # 6948) on :
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.
Posted by njlymemom (Member # 15088) on :
I just read a little about this, it sounds
very much like what happens. Thank you for the
info. I had a few questions about this and
sent you a pm.
Posted by troutscout (Member # 3121) on :
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 Posted by Beverly (Member # 1271) on :
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.
Posted by teresambear (Member # 15061) on :
Cathy, If you have the time go to the yahoo answers site on yahoo. Type in any side effects of vitamin b-complex.
You will be surprised at the answers. Teresa
Posted by LymeCFIDSMCS (Member # 13573) on :
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.
Posted by njlymemom (Member # 15088) on :
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,
Posted by LymeCFIDSMCS (Member # 13573) on :
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.
Posted by MarlaSue (Member # 14601) on :
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
Posted by DolphinLady (Member # 6275) on :
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?
Posted by tailz (Member # 10014) on :
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.
Posted by njlymemom (Member # 15088) on :
Lymecf - my guess is that it is bart related too.
if I miss the rifampin or biaxin (even just one dose )
![[group hug]](graemlins/grouphug.gif)
![[Wink]](wink.gif)