posted 09-05-2015 12:27 PM Hi everyone! I just registered. My wife had a very rough night last night and I am very worried.
She has yet to recieve an actual Lyme diagnosis, but all signs point to it. A little over a year ago she had 2 tick bites in Pennsylvania. We now live in Colorado and it is much less common out here.
In the time since her bites she has been through many specialists, possible diagnoses of everything from MS to Cushing's disease to RA, but no positive tests.
Following a dose of corticosteroids her symptoms blew up and have gotten so much worse. Her pain is severe and body wide, pain pills can't even touch the pain.
We are taking treatment into our own hands since doctors haven't been helpful. Still have not seen LLMD. We ordered antibiotics, doxy and tinidazole after a lot of research. That was yesterday so we are waiting for their arrival.
In the meantime, we read about Claritin possibly helping fight Lyme, so she has been taking it for several weeks. Since then she has been having some additional, scary symptoms. I am wondering if Claritin can cause herxing because thats what this seems like.
Last night she had these intense body spasms and twitches that were extremely painful. She said they felt like shocks. She became very rigid and kind of contorted and yelled out in pain. This happened on and off for about 20 minutes. This was the worst episode yet, but this has happened several times in the past week or two.
Anyone know what is going on? Does this sound like a herx reaction? Something else? What can we do, besides doctors (she is doctored out for the time being after most recent bad experience)? Should she keep taking the Claritin?
(Breaking up your post into a couple lines for easier reading for many here)
[ 09-05-2015, 05:16 PM: Message edited by: Robin123 ]
Posts: 11 | From United States | Registered: Sep 2015
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I think you should go to "seeking" and find her a good LLMD.Travel if you have to. This is really very, very complicated and she'd be much better off with a Lyme specialist.
Truly, I understand the doctor fatigue because we've all been there. But find her a doctor who does get it - they ARE out there, and people on here can help you find one.
As to the Claritin question, my understanding is that there has only been one study in which Claritin showed promise against Lyme in a test tube. But it's not yet known if it would be effective as a treatment. More studies are needed.
From what you describe, it is also possible that she had a seizure.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Thank you for your advice! I found a LLMD here with good reviews. I will get her on magnesium ASAP. Any suggestions for the best form or brand? I know not all are created equal.
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posted
Also, we thought these were seizures as well, but the doctor we just saw said that you will lose consciousness or not remember things that happened during or after seizure (which was not the case with her). Basically he said it was not a seizure. I have also read about Lyme seizures being quite different from typical seizures.
Posts: 11 | From United States | Registered: Sep 2015
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posted
Thank you! It has been about 4 months since the steroids. They tried to push them on her again but we declined.
Posts: 11 | From United States | Registered: Sep 2015
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posted
Stanford is the place that's doing the Claritin trial. It's funded by the Bay Area Lyme Foundation. You could contact them next week at www.bayarealyme.org/our-research/treatments/clinical-trial and see if you could get in touch with any of the researchers for this study to ask your questions. Just an idea...
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Keebler
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LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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WPinVA
Frequent Contributor (1K+ posts)
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posted
Originally posted by LymeWife: "Also, we thought these were seizures as well, but the doctor we just saw said that you will lose consciousness or not remember things that happened during or after seizure."
Oh gosh no! There are all different kinds of seizures. You don't always lose consciousness or awareness.
From Epilepsy.com: "What is it like to have a simple partial seizure? When people have simple partial seizures, they are fully awake, alert and able to interact throughout the seizure."
I'm not saying she had one, just wanted to correct the misinformation. If it happens again, you may want to ask for an EEG.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- Yes, they could be seizures.
And, no, most doctors won't understand the different kind of seizures that can happen for those with lyme. The old myth that consciousness must be lost is ridiculous.
Seizures have been part of the lyme mix for me and I can tell you that not one of the many neurologists consulted would give me the time of day.
The EEGs they did were not really appropriate. An EEG cannot capture all signals from all parts of the brain. And the very, VERY slow waves that the EEG technicians (oh, yes, several over several years) quietly whispered to me similar remarks:
the doctors don't consider this kind of unusually slow brain wave activity to matter, but from what I see with the way I walked in there, had seizures DURING some EEGs
and was still later told by doctors that my tests were fine, just showed a lot of "artifact" or "noise" and the equipment must have been just a bit too sensitive, etc.
Well, it was beyond disappointing but also dangerous. My brain & body took so many hits during the actual tests but these doctors where all determined to tell me I was fine.
I had asked about lyme and, in my state, that is a crime in their eyes.
Yet, another mitigating factor: inner / middle ear issues. I would not know for many years after those EEG torture experiences and getting kicked out the doctors' doors that
a bone in my inner (or is it middle?) ear has a hole in it. And that can cause what's known as TULIO and a myriad of other issues.
For me, the seizure triggers are always sound or light - or motion. All vestibular /sensory triggers -- or getting too hot.
So, the vestibular disorder (known now at SCD, superior canal dehiscence) could very likely trigger a seizure by the pain it causes but also then the super excitability of my body / brain with untreated lyme and other tick borne infections.
Most doctors, even neurologist and even some inner ear doctors are still in the dark about this condition, it was only discovered about 8 years ago.
Point is, well, various points: IF some of the triggers for your wife's "neuro spasms" (will that work for now?) if they are in any way sensory related that is also very common for those with lyme who have seizures.
The inner ear is greatly affected, even if the other bone issue that I have is not in the picture.
Also, with liver stress and elevated toxins, anyone can have a seizure.
And it does not mean it's actual epilepsy.
Unless life threatening, and since the doctor dismiss your questions about possible seizure
and since most seizure drugs are ototoxic and hard on liver
and seizure drugs sedate, they don't address the cause and (for me and some others) make seizures worse by liver stress or by dulling a brain that is trying so hard to wake up that it works harder to push through and the - blast off.
I'd consider for 1. cause(s) - infections are top seizure cause but so can be low blood sugar, etc.
but also 2. triggers.
Minimize triggers. Avoid any fluorescent lights - any. LEDs may be okay, maybe not. CREE LED work okay for me but most of mine are the old incanscent kind.
hands os numb now but must finsh a bit. sxorry.,
Wait to talk to LLMD aobut possible sieuzres. YOur LLMD will know WHO in that area might be of help if other help needed.
MAGNESIUM is the best in the mean time, MAGNESIUM is key.
avoid aspartame, msg, etc.
A QEEG - yes, QEEG far better than an EEG. Most doctors won't do this, though. and insurance may not cover. Three different QEEGs over 3 years, with diffenent doctors all show the same thing fo rmy case with seizure triggered form same part of brain when some kind of sound also occurred. -
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Keebler
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Topic: Best way to control limbic seizures / overactivity?
Many LINKS -
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Keebler
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posted
- Seizures, in this case, can also be from the steroids previously given. A huge problem with lyme. Or course, you / she had no way to know that and most doctors are clueless in this matter.
How could the steroids lead to seizures, you ask? Well, in someone with lyme, there is always - always - also adrenal dysfunction. And steroids just clobber the adrenals and then later they are working so hard that such adrenal stress can trigger seizure.
Again, this is something that even neurologists deny, ignore, etc. I found this in my research years ago and it sure rang my bell with connections as the seizures started for me after a very bad course of steroids (I had no idea then they could be so bad).
While after the fact, in case you need this again to "just say 'no'":
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Check all Rx being taken as to if side effects are either hard on the liver or perhaps have a seizure side effect (or lower the seizure threshold).
Any Rx that is hard on liver or kidneys can lower seizure threshold for someone with a toxin load (as with lyme, lyme is very toxic).
Liver support thread above important for all Rx, too, not just for antibiotics.
Any drug that feels like it "wires" or excites can lower the threshold, too. Avoid when at all possible anything that does this.
Consider that Claritin may not be a good Rx for her - stop it and see if this spasm diminishes.
I do know that Claritin is ototoxic so if it affects inner ear, that can also lower a seizure threshold -- the inner / middle ear system is so connected to the brain and when the ear system is off kilter, it can alter neuro signals in the brain.
Good luck to you both. I hope she / you can get into the LLMD soon and that it will be smoother sailing. -
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Keebler
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posted
- Memories of various antihistamines just came to mind and many certainly did "wire" me. Since the "spasms" occurred after taking Claritin, I suggest she stop this - at least until some time off of it to see if this new symptoms subsides - to gather that detail.
It may be that as Claritin blocks or lowers manganese, this is not good for her body. There just seems to be a connection, at least that Claritin could be a bad trigger for her.
Not all is known about how it works. Not all is know about everything, though, so we have to sort out a lot for ourselves, as humans on earth. And not all bodies are the same.
Until she can get into see a LLMD, what I would do is take Olive Leaf Extract (or Allicin or Berberine) as basic helpers that cover several bases for the time being - in addition to magnesium, of course.
Histamine H1 antagonists and clinical characteristics of febrile seizures
Int J Gen Med. 2012; 5: 277–281. Mohammed A Zolaly
Excerpt:
. . . Seizures or convulsions have been reported in the literature with some first-generation antihistamines (chlorpheniramine, diphenhydramine, pheniramine, and pyribenzamine)
as well as with some of the newer-generation antihistamines (astemizole, cetirizine, fexofenadine, loratadine, and terfenadine). 7–9 . . . -
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posted
Thank you all so much for the feedback. Gives us a lot to think about and look into. I appreciate it.
This Lyme thing is pretty new for us. We didnt even think it could be Lyme until about 3 months ago when my dad mentioned the possibility. Since then it has all made sense. So any and all feedback is welcomed and much appreciated.
It is very disheartening and frustrating to know that Lyme disease and the treatment and research is being suppressed. I am truly sorry that all of you have had to deal with this devastating disease and the lack of resources and knowledge of doctors. I hope you all get the help and relief you need.
Thank you for the support.
Posts: 11 | From United States | Registered: Sep 2015
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posted
Sounds like nero-lyme to me. Sounds like a herx also. Doxy Tinid, good antibiotics. Penetrating through cell wall and hitting the cysts. You may have to have her do pulse therapy until she gets through the rough part.
"body spasms and twitches that were extremely painful. She said they felt like shocks"
Been there when this started for me 9 years ago. It gets better. I rarely twitch anymore but I get the shock like zaps that penetrate through the core of my body. Every now and then. Is she having any heart related stuff? Palpitations, PVC's Pac's?
Detox. Up her water, dry skin brush, Epsom salt baths, get some binders like activated charcoal and Benoite clay. Don't take the binder after medication or vitamins as it will absorb that as well. take a few hours before or after meds and food.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
Good to know! Thank you! We have the clay as we thought it would be good to detox. Actually we found a cilantro/clay detox procedure that we were going to try. Apparently the cilantro flushes the body of heavy metals, which the lyme bacteria stores and feeds off of. And the clay helps wash it all out.
Posts: 11 | From United States | Registered: Sep 2015
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posted
And she said yes she has been having some heart palpitations.
Posts: 11 | From United States | Registered: Sep 2015
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Keebler
Honored Contributor (25K+ posts)
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posted
- Lyme can cause severe magnesium deficiency and that can trigger heart irregularities. While many factors about lyme can cause all kinds of symptoms and, ultimately, proper assessment for lyme and other tick borne infections is important (and then, if warranted, treatment),
many of the suggestions are to help along the way and to help set the body as right as it might be in the wake of lyme & other tick borne infections (that must also be assessed).
Magnesium is one of the big boy top of the team players and can help relieve many symptoms at least to a nice degree while the other matters are being attended to, or while waiting to get into an ILADS educated LLMD &/or LL ND.
Topic: MAGNESIUM - Informational Links set -
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Keebler
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posted
- In addition to Magnesium . . . Hawthorn is an herb that is also very nourishing and supportive to the heart. It was essential in helping my heart settle down.
From: The ONE EARTH HERBAL SOURCEBOOK (Tillotson, et al)
Lyme Disease.org -- excellent information -
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Keebler
Honored Contributor (25K+ posts)
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posted
- While lyme and other tick borne disease (TBD) can be the major ticket here, also important to consider other things that can also be tipping the scales regarding heart rhythm issues (especially since lyme / TBD puts one in such a very tender place with all body functions / systems).
See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us when added as supplements, beyond a normal dietary level)
Seaweed has its own natural MSG and can be very excitatory. -
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Lymewife...im late to the party here. You got a lot of good info. There is also top notch llmd in ca
I just want to say thnk you for believing your wife and supporting her even tho docs cant come up with dx
Her sx do sound very much like lyme...serious lyme...and its important to hook up with good llmd soon
Tx outcomes better sooner you get started
Thank you again...many couples on here dont get support from spouse or family...and its really hard when that happens
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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