My youngest is 10. He has always had some troubles falling asleep like I do. But since we increased his Biaxin to the 1000mg dosage he has the worst insomnia and nightmares!
He goes to bed then can't fall asleep for awhile. Then he wakes every night (for 2 weeks now) at 1:30am with a nightmare.
Then he can't fall back to sleep for an hour or more. We have tried to watch tv, read a book and nothing works. Then he gets hungry and eats.
The both of us have to sleep all day to recover. It's made my fatigue worse and I can't function.
So the LLMD isn't in until Monday. I am thinking of backing him down to 750mg a day. He was ok at that dosage. Then call LLMD on Monday.
I wonder what else he can give him that works good? He has Mycoplasma too. I was really hoping this Biaxin would work for him!
Anyone else get this problem? Any advice?
Thanks!!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
I agree, at least reduce it until you can see the llmd.
Bart/myco herxes are horrible. 2 here have experienced this type of herx.
My best wishes for your family.
-------------------- 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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bettyg
Unregistered
posted
amy,
i just checked my handout of biaxin from the pharmacy; it mentions headaches NOTHING about nightmares or insomnia. so sorry for what he is going thru..
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posted
If he wakes at the same time each night, I would check into Chinese (?) med information on organs and what time of the day they are related to.
For example, 4:00am means liver.
That might help you determine what organ this larger dose is stressing.
Posts: 236 | From Illinois | Registered: Feb 2009
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Alv
Unregistered
posted
bart herxes are a nightmare.... I was awake one year ..so my son ...we would fall asleep in any place in the house...cauches diferent bed wherever....at 5 am in the morning.....over a year and now we go to bed at 10-11 and we want to sleep longer...
bart is really a nasty bug..he will become emotional as well my son was 7 and he continued retreating it as he had it very very high ....levels from test
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tickbattler
Unregistered
posted
Hi Amy -
Sorry you are going through this. My twin 4 year old boys have had lyme, bart and babs for at least two years and have been in treatment for about 10 months. They see DR. J on CT.
One of mine had insomnia for a year before we started treatment. He would jump in his crib for 2 to 3 hours in the middle of the night about 4 nights per week.
The insomnia went away after about 6 months of treatment. The boys were on Mepron, arteminisin, zith and bactrim (all at once) in order to treat babesia, lyme and bartonella.
Their protocol has now changed to add rifampin instead of bactrim to traet the bartonella, which seems to have gotten worse. The babesia seems to be much better.
They also had frequent night terrors and nightmares.
I think it is possible that the insomnia and nightmares may have been related to babesia in our case, but I'm not sure. Could be bartonella related as well. I think bartonella is the cause of my husband's insomnia. It get worse when he treats it.
Have you checked to see if your sons are sweating at night? If so, they probably have babesia. Lighter, sticky night sweats may be bartonella.
You might consider asking about additional meds to treat the coinfections if you think they may have them. It seems they may be a source of the insomnia.
Good luck to you. I think you might try decreasing the dose and working back up, although you may be in for some insomnia no matter what dose you do. Seems to be part of the deal.
posted
Alv - what meds worked best on your son for the bart? I am hoping rifampin will do the trick for my 4 year olds!
Thanks,
tickbattler (PS- I can't access my mailbox, so you can't send me any pm's).
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Amy, cut his dosage, now, or hold off 'til Monday! The doc might try another macrolide. There are a Few similar ones that he might handle better.
Or it might just be that 1000 gr/day is too much for the little guy. That's the dose my doc had ME on & I'm 160 lbs.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
We just started treating my daughter's Babesia two months ago and she had horrible nightmares for the first few weeks.
I thought it was the Bart, but our LLMD said it was Babs - along with headaches and fevers.
Her nightmares were horrible. She was afraid to go to sleep. She is very ill and on lots of sleep meds. Luckily, it passed in about three weeks.
She is still having nightmares, but not so severe.
I believe he is having a Babs herx. Personally, I'd back his dosage down too until you can talk to the doc.
Have you tried all the standard sleep remedies? Valerian, Calms Forte, L-Theanine, CALM Magnesium, Kava Kava? One of those may help him fall asleep.
In our house, sleep is the number one priority. It doesn't matter what time of day. Burranscano cites three reasons for treatment failure : noncompliance, alcohol consumption and not enough rest.
Hope you can all get some rest. Good Luck
-------------------- "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
Anyone know what is safe for kids to take for sleep? (10 yrs old)
Where do I get it too?
Maybe something over the counter or at the vitamin store since I can't get a hold of the dr yet?
Thanks!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
You could try melatonin; check at a health food store and get their advice about dosage.
Posts: 374 | From United States | Registered: Nov 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i'm not a child but biaxin did give me nightmares for a long time and hallucinations big time.
one night i saw that doom guy in the robe with the scythe standing in the hall.
then i saw giant scorpions on michael and you could see through them.
wow, i saw all kinds of things so bad i couldn't drive.
eventually went away...so i understand exactly.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Alv
Unregistered
posted
Rifampin will help but not eradicate...CALL dr Z in NY and ask if HH can be given to a kid that age.my son was 7 when he took it.I do not know about younger kids..maybe yeas why not...but still will check.
My son was in combo RIFAMPIN , MINO and AZITHR including HH and RIZOL MY ...yes all of them together...funny as he never was positive on ehrlichia before..once bart was going down EHRLICHIA SHOWED UP .
He had RMSF..when this down BART showed up and than EHRLICHIA...now FRY /babs bug!!!
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posted
Hi Amy - and everyone. The nightmares are really terrible. Please try this - I swear by it - it works. Have your son repeat with you "I will not remember my nightmares (or dreams)" and have him repeat this in his head as he lays down to sleep.
It will train his mind to not remember nightmares! Since I did this - I have not remembered any (except a few when I was woke up suddenly) and I have a better quality sleep and start my mornings with a clear mind - rather than a stressed out one!!!!
Please try it - it is harmless and really does work!! BTW - you know this IS Lyme related - the nightmares - don't you?
TC -p
Posts: 641 | From So. CA | Registered: May 2008
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Alv
Unregistered
posted
yes you could try melatonin.....bart herxes are not fun...and treating bart will take longer than babs...
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posted
I would try valerian or kava kava tinctures or the homeopathic Calms Forte, all available at the health food store.
At age 10, I'd start at 1/2 the recommended dose.
I have never had luck with melatonin or 5HTP in my family
-------------------- "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
He does get night sweats (so do I) and he has asthma (not atypical so I think it's from lyme).
Does anyone know if the Fry Labs test can find Babs? It found Mycoplasma for him only.
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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tickbattler
Unregistered
posted
Fry labs picked up bart in my family but did not pick up babesia, even though 3 of my family members had it.
I would recommend getting the babesia FISH (microti strain) test through Ignenex as well as the WA-1 (this tests for the duncani strain).
We started treating both of my boys for babesia based on night sweats and a few other suspicious symptoms. One had a positive FISH test but the other boy was negative. Now, 6 months later, we finally got a positive WA-1 test for babesia duncani on this son. So, they both eventually tested positive, but for different strains.
In my opinion, you do not want to wait for a positive test to start treating if you think you have babesia. It should be a clinical diagnosis.
I would look up babesia symptoms to see if there are any others besides the night sweats.
posted
I take 2000mg Biaxin a day and the day I started was the last good sleep I had for about 6 weeks. I woke up from a dream every hour or two all night, every night.
Thought it would never end but after about a month or so, my dreams started to get less frequent and less vivid. Now I sleep almost normal again.
It could have been the Plaquenil too, as I added them together....
Good luck.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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posted
I am also on 2000mg Biaxin daily and experiencing insomnia, falling asleep for a bit, then laying awake all night and nightmares.
I think the Biaxin is also causing a dramatic increase in anxiety symptoms...almost like an unrelenting panic attack.
Amy,
Any luck finding something to help your kids? I am so sorry to hear when children have to go thru this too...hope you all have some relief soon.
Posts: 345 | From East Coast | Registered: Apr 2008
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posted
Thanks everyone! The doctor called in Trazodone. But we are going to try Melatonin 1st. Or something else natural that kids can take.
The Trazodone is an anti depressant and has several side effects.
I just hope something works soon cause I can't function like this anymore!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Amy,
I am so sorry that your son is going through this. Poor guy. I can imagine that it is really rough right now for all of you. I hope that the natural treatments will work for him. Insomnia is awful I used to have it horribly in the late 90's.
I use Melatonin too...my favorite brand is Source Naturals. I've tried other kinds, but they really didn't help much.
I am able to find it in my local "Roots" store...I've seen it in a lot of other health food stores and holistic pharmacies as well.
Posts: 345 | From East Coast | Registered: Apr 2008
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