lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, My 18 year old son has recently expressed yet another odd symptom to me.(I posted the othe day about him).
I have Lyme and thought I had heard it all, but apparently not. I am suspicious to say the least my son also has LD, his symptoms are much more subtle than my own and wax wane more often.
My own experience with this disease has been extreme pain. He does not have pain, but other possible LD symptoms.
Now he has told me of another possible symptom, sleep paralysis. He read that is means lack of melatonin. I have never heard of this until he described it to me and we looked it up.
Anyone else experience this and if so, what tick borne disease was it related to?
Aniek
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Member # 5374
posted
I had it a few times in college. I couldn't tell you which coinfection it was. We know I have Lyme, and I suspect bart and babs.
It was not constant, but it was terrifying the few times it happened. And I know it happened a few times when I was having back pain. Looking back, I was probably in a flare during that period.
Oddly, I remember one episode where there was a yellow light above me that was taking the form of an insect telling me to follow it. Years later, I wondered if that was my subconscious trying to tell me the cause. At the time, I was just absolutely terrified.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I had that a few times as a teenager. It is very scary. As far as I know, I don't have Lyme.
Posts: 984 | From San Diego | Registered: Nov 2006
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groovy2
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Member # 6304
posted
Hi Lb
It happened to me 2 times a few days apart-
the first time I was paralyzed for about 5 hours after I woke up- sacred the hello out of me -
the next time I was parlizes for about 3 hours after I woke up --
I made both of my shoulders hurt like Hello for close to 6 months after that--
I think it was caused by Babs because 3 days before this happened I had a flair up of the Babs rash and it was mostly on my shoulders -
Babs causes a rash that looks like Prickly Heat it Itches like Crazy--
The rash also has a nerve reaction where you scratch it on your arm and feel it on your back ect--
The paralysis only happened those 2 times - and I am glade for that--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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adamm
Unregistered
posted
Had this before infection as well (although I don't doubt that an
increase in the frequency of its occurence could be a symptom)
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cantgiveupyet
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posted
I had this twice in the beginning of treatment.
First time i ever had it in my life. It was very scary.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
For several years now I will wake up and one of my arms wont move at all. I literally ahve to
pick it up and move it. It will last for awhile and then come back. It often wakes me as I guess
I try to move in my selppe and and cannot! Is that what this is????
It IS Lyme related???? I didnt know that!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Andie333
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posted
I had two bouts of paralysis as part of my first two abx herxes. In my case, they were both waking, not while I was asleep. And they were terrifying.
I found myself completely unable to move for about 4 hours. I could talk, but no part of my body could move. I was terrified that my lungs/ heart would freeze, so I was taken to the ER via ambulance.
After about 4 hours, the paralysis passed.
Since those two times, thankfully, I haven't experienced paralysis again. It's scary enough when you're awake; i can't even imagine what it would be like to wake up and find that.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
A friend of mine whose daughter has LD just told me her daughter went through this and it was related to neuro-lyme.
So, I guess it is lyme-related.
Yes, it is scary for my son. He says he will lie there unable to move(his entire body) and he has to tell his fingers or toes to move and so on. It doesn't last more than a few minutes but it takes time to regain the ability to move.
hardynaka
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Member # 8099
posted
I don't know if what I had was the same. It happened while walking. My legs started feeling sooo heavy I was having trouble to move them, really like they were being pulled by a magnet on the earth.
I insisted in tryng to go on walking, then moments after I was having a terrible air hunger attack with hyperventilation (I suppose). Then I REALLY got paralyzed, my whole body except for eyes and mouth.
I attribute that NOW to excess of toxins, but who knows? I was full of babs and borrelia at that time, babs was flaring.
It never happened while in bed though.
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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Aniek
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posted
Selma,
Sleep paralysis is different than a form of paralysis when active or wide awake. Sleep paralysis has something to do with the act of sleeping or waking.
My understanding is that it is usually accompanied by an inability to reach a full sleep.
As somebody who has had sleep paralysis and had an inability to move certain limbs while awake, the sleep paralysis is much less scary. At the moment, it is terrifying. But when you get out of it, your brain tells you it was just a dream.
I had roommates when I had sleep paralysis and I was able to make enough grunt noises to get my roommate to wake me up.
However, I would be haunted by the anxiety of it for months or even years in some cases. I have a vivid memory of sleep paralysis as a child. I found I would relive the emotion in random periods.
But I've also been fully awake and unable to move a limb for a few moments. That scares me more because I can't equate it with a dream or being in a phase of sleep.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
My husband has many times had the experience of waking up but being unable to open his eyes, roll over or make a sound for several minutes.
It is terrifying to him when this happens.
He is mostly asymptomatic of lyme but has been bitten many more times than I have.
I have woken up and been unable to move my arms for a few days. This seems to me now to have been a lyme flair in an old neck injury.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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CaliforniaLyme
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posted
SLeep paralysis is connected to narcolepsy which is connected to Lyme!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I had this for a year when I was 16 and living in Cyprus, I actually went to the doctor out there because it was so disturbing, he said it was the stress of exams, interestingly Dr. AW thinks that it was while I was out there that I caught Lymes. I had it on and off over the years, always when I was really tired. I used to fight to bring myself out of the sleep. I read somewhere to not go to bed hungry, and I now suffer from reactive hypoglycemia so always eat just before bed and have not had this for a long while. Best Wishes Chris
Posts: 22 | From England | Registered: Jan 2004
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Itsy_bitsyone
Unregistered
posted
Like Sarah Said...
Its a symptom of Narcolpesy.
Its called Narcolepsy with Cataplexy.
Narcolpesy is caused by a lack of transmitters in the brain called hypocretins. Hypocretins can lower due to genetics or inflammatory brain disease.
So, its not a symptom of babs or bart or lyme specifically, though I don't have babs or bart and do have a narcolepsy dx. Its about the inflammation diseases cause to the brain. The loss of hypocretins is also seen in parkinson's. Its a condition caused by another condition. If your brain swells due to bacterial infection of any kind, you can develop narcolpesy from any enchephlopathic disease or tumor.
I do not fall asleep while driving or out of nowhere. I do have sleep paralysis, I do have other cataplexy as well, and some of the other symptoms. That, in and of itself, is enough to warrant a sleep study and a diagnosis.
What happens is that the lack of hypocretins causes sleep regulation to be "off". You do not spend any (or as much) time deeper than REM while sleeping. IN other words, you have too much REM. Also, the REM stage of sleep can creep in while you are awake or during emotional upheaval.
If you wake during REM (for normal people REM turns off upon waking), you cannot move. You have emotional upheaval and also can trigger paralysis. Its also associated with massive fatigue, and sometimes sleep attacks in some people, because of the lack of full sleep you get during the night.
If it is true sleep paralysis, you will sill be able to move your hands, fingers, toes, and eyes. I wiggle mine until the rest of me wakes so I can move to roll over and go back to sleep.
Rather than speculate, you may want to have a sleep study. Will it go away after antibiotics? I don't know yet. I know I switched from gabapentin (which helped some) to lyrica, and no paralysis since I did that.
Narcolpesy could be permanent damage even after lyme recovery, I'm not sure if hypocretins will replenish themselves or not, and I don't think docs know either. If it is permanent damage, a dx of narcolepsy can get you provigil prescriptions as well as partial complex seziure meds like lyrica. There is no cure.
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CaliforniaLyme
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posted
Itsy- it is connected to LYme- Klempner found Lyme patients many of us have the narcolepsy gene- it may be a gene that predisposes to both even-!!! ***************************** Mark Klempner found that a large number of Chronic Lyme patients, seronegatives, have the HLA-DQB1*0602 haplotype that is correlated with narcolepsy. He talks about it during talks to physicians, but this was not revealed in the July 12, 2001 "BREAKING MEDICAL NEWS"
Here's what he says: "Um, some people will view this as bad news, some will view it as good news, and some people will say, well, where do we go from here?? I think that really is the question, really is to coalesce and say, ?where do we go from here?
Um, There, these patients obviously, are very, very much interested in that question, as we are, and I just want to highlight a preliminary piece of data of where we think we?re going from here, unpublished*, and not for large, uh, dissemination, but here is the preliminary data.
And, that is, that when you look for the possibility of an autoimmune disease, the best way to look is to see if there is any genetic clustering in HLA haplotypes. The reason for that is the way antigens get presented in the context of who you are, that is, your HLA haplotype. And we can talk in some detail about that. Those diseases that I think everybody would agree are so called Autoimmune :lupus, rheumatoid arthritis, type 1 diabetes, and perhaps MS, have some clear genetic clustering that l eads us to believe that these are indeed autoimmune diseases, although we do not satisfy so-called co-postulates of autoimmune disease that we?ve written about. And the odds ratio for your having that particular HLA type, in the case of R.A, a DR4, or a DQB0602 to protect you from type 1 diabetes, are on the order of 3 to 6. One of the ones that is probably highest, of course, is B27, in patients with alkyloiding spondolytis and the like. It turns ou t that if you look at the first 51 patients with post-treatment chronic Lyme disease, the patient population that participated in our study, there was a very high incidence of DQB0602 with an odds ratio of 770%. So it may well be that exposure to THAT organism with THAT background of HLA haplotype may lead you to devel op chronic symptoms. That is a hypothesis that needs to be tested. It would obviously lead to an entirely new form and approach to therapy."
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Itsy_bitsyone
Unregistered
posted
Sarah,
Let me re-speak what I said. Cause re-reading it, I could see how it didn't say what I was trying to say!
I'm rather useless first thing in the morning. I had to switch from coffee to tea with lemon because of the bad stomach issues from the tetracycline overload...lol I am probably not making a whole heck of a lot of sense.
I'm not saying it cannot be linked to Lyme. I'm sure thats what caused it for me. I'm saying it can be linked to genetics or ANY disease that caused inflammation to the brain....its not specificially Lyme or babs or bart...but can have plenty of causes.
There are more post-mortem studies on Narcolpesy itself than Lyme or other TBIs, unfortunately. Because of Narcolpesy and Parkinson's showing the inflammation and the lack of hypocretins post mortem in people with cataplexy...and because they can get hypocretin information via spinal tap while alive...there is a lot of information out there for it. Like many diseases, studies are still lacking, however.
I noticed some folks were trying to figure out which illness, which co-infection caused it...so my point was that simply cataplexy/sleep paralysis as a condition could be caused by any one of them...or all...or none, as it could be genetic. It does indicate only that you had inflammation in the noggin from "something" and that it screwed up the neuro transmitters that regulate REM sleep.
"Getting better" from one infection or the other shouldn't be gauged on whether your narcolepsy stuff goes away, because it may not.
Interesting post...thanks for that. Genetics are very interesting. I'll need to look at that more closely.
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CaliforniaLyme
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Itsy- it is interesting to me because I had narcolepsy symptoms when I was very sick- AND Parkinsons symptoms (and MS and ALS and ALz symptoms but I think all in all I was the most Parkinsonian!!)A real neuro mutt-
ANywayz, yup, I need coffee*)!! I am down to half caff!!! Works for me *!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymebytes
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posted
Thank you for all the great info you all have provided.
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