Topic: Am I having a "Brain Herx", constant crying Jags, feels like I'm gonna have a seizure
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
and my Nervous system doesn't exist.
I finished dose 11 of IV Rocephin last night. This is the furthest I have ever been able to go on abx.
I am trying to suck it up as many have suggested, but I feel like I am running out of "Reserve" as in "I can't take it anymore".
My LLMD is one of the best they say, but I have now put in 3 calls, Thurs. Fri, and now Today. I am waiting patiently for a call back as how to proceed.
I don't want to stop if I'm hitting the infection. I would think I am as my Neuro symptoms are so flared.
My WBC count was 16K on Thursday from the Nurse draw, and when I landed in the ER on Friday with chest pain, shortness of breath, and a heart rate of 40, my WBC count was just 9K. How can this be ? Some have suggested stress can make the WBC count go up, but I was not stressed when it was 16K and stressed to the max when it was just 9K, just 24 hours after the first draw. Nothing makes sense with this disease.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you certain you are not getting aspartame from some source? MSG?
If you feel as if you are going to have a seizure it is vital to lie down in a dark and quiet room and be a still as you can, breathing gently and in rhythm. Stop all activity.
MAGNESIUM and TAURINE are the top helpers;, Fish oil, too. B-6 will also help calm the nervous system.
ADRENAL support such as B-5, Cordyceps, etc.
DARK & QUIET is absolutely essential to help prevent a seizure. This is no time to push ahead and hope it passes. DARK & QUIET - maybe some gentle music.
MOZART is most helpful in this case and it's been shown to have a good effect in helping to normalize brain waves that can become erratic during seizures. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Gary, it's no joke about checking on MSG. I never had it in any food prior to getting sick--I cooked all the time. Now, I eat more prepared foods. I try very hard to get the least processed stuff, but even whole foods and trader joe's brands have it (or autolyzed yeast extract, which is the same thing).
Anyway, I discovered that stuff really makes me miserable on top of miserable. It's been the straw that's broke the camel's back on some days where I was so sick I couldn't even grasp how sick I was. It took me a long time to put it together.
I'm real careful about it now. I'm not saying that's the reason you're so ill, but it is something to be vigilant about (or at least was for me).
And...I hate to say it, but Rocephin was very tough for me, very. I had to stop it after 2 weeks. I'm not saying you should stop, only that it really can be rough.
More than anything, I hope your doctor calls you back.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I have had this feeling for a few days now and I've had it in the past, but it seems to get more intense the more I treat.
The Rocephin is giving me diarrhea so I would think I can't take Magnesium right now.
My anxiety is real bad too. I get out of breath just walking to the bathroom. My Autonomic nervous system has gone haywire. But the Crying I would swear is a symptom. It is triggered by certain things like if I look at my son or daughter and think how I am missing out on their childhoods, but then the crying gets excessive to a 2 year old.
The feeling of crying is always their now, it's just a matter of what will set it off. Sometimes, I just cry for what seems like no reason.
I don't think I'm gonna have a seizure, but the sensation as I have stated in the past is like I was just hit in the head with a 2 x 4. It's that jarred brain feeling. Not sure how else to describe it.
I can't believe I can sit here and even type this the way my brain feels.
I hope the Dr. calls me back too.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
Gary, I can relate to both the crying and the pre-seizure type feelings. All I can say is that after a year of treatment, those things are less for me now. Still there, but less.
What I'm trying to say is that, it's not 'normal', but seems to be feelings and symptoms (yes, the crying too, I consider a symptom) that many of us experience to varying degrees.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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I know you probably know more than I do about the disease, and are further along with treatment, but if your case is anything like mine, I would look into toxicity.
Have you tried a good quality Whey Protein and NAC recently? Try taking it when everything is at its worst, and see if your nervous system calms down. I find that in my case, glutathione infusions aren't as effective. If I give my body the precursors it needs to produce more glutathione, for some reason, my body as able to produce good quantities of it.
Of course we are all different, and maybe glutathione isn't your problem, but I believe many people with Lyme suffer from low glutathione.
These two things are what honestly keep my nervous system from going into hyperdrive, and it has been keeping me out of the hospital. They also make my medications (beta blockers, benzos) work as they should.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Porphyria - all kinds - should be considered - could be causing the serious reactions you get so often.
posted
If it's porphyria, a simple test is to stick your urine out in the sun and see if it changes color. I think it will normally turn reddish purple if you have it. Not a perfect test for it, but a free one.
That being said, it just looks like a nasty herx to me with toxicity. The drug is safe even if he had the disorder.
[ 04-12-2010, 05:59 PM: Message edited by: kday ]
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A urine test is good for one kind of porphyria but not for most other types. There are at least 11 kinds.
As kday mentions, The "poor man's test" is placing urine in a clean clear glass jar in the sunshine. If it turns purple, that is a big clue. However, if there is no color, that does not rule out other kinds of porphryia - or it may be that it was not an acute time when the test was done.
Also, there are other colors the urine will turn for other kinds of porphyria that test urine. It's not always purple.
A full range of porphyria tests requires testing of blood, 24-hour urine collection AND 24 hour stool collection. Unless at that exact time, porphyrin level is very high, a test can be inconclusive.
Some genetics tests are now being done for some kinds of porphyria, too. More at the thread above. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Gary,
Are you feeling better?
Did your doctor finally call you back?
I sent you a PM.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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posted
Gary, I had the same kind of stuff during treatment with antibiotics for a couple years. It was extremely intense for a long time. I attribute it to the disease itself and the die off, or treatment of it. Hard to believe how terrible lyme can be.
posted
I have had the crying as a symptom. I will walk around with a knot in my throat, a tight chest, and tears brimming in my eyes, and any little thing will set it off.
I then usually blame whatever or whoever is in front of me and think that I am really angry, or sad, or whatever, about that person or event, and have trouble recognizing it as a physical symptom.
Then I wake up a day or two later feeling fine, and say, "D'oh!"
Try to remember it's the disease, and not you, and I hope your doctor gets back to you with help, and you feel better soon.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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