Hi My son has been on Lyme Protocol since Late June 2005 and he is also autistic and 21yrs old. Since starting we have seen a dramatic increase in OCD behavior. He also has hyperacusis and usually herx's in way of aggression. My quesiton is have any of you experienced this and if so what have you done or used to help the symptoms? Also he is starting Mepron next week with zithro and any advise would be appreciated. Thanks Eileen
Posted by trails (Member # 1620) on :
I have been wondering this SAME thing! About myself that is.
I dont have any answers though. I can tell you that since RE-infection that brought with it all the co-infections in 2001 I have been getting MUCH MUCH more obsessive compulsive. I dont have a diagnosis, but I know the disease from friends and past partners. I can't tell if it is part of the disease, or part of the treatment or part of being so sick so young and fighting like a *&(*&#@^ to get treatment.
What is Hypercaucus?
I can tell you that one thing is for sure---while on Mepron/zith this past May, I would experience periods of MANIA/Obsessive thinking. For example, I was reading this book about a child's experience in the Rashneeshpuram cult in Oregon in the 70's and for 2 days straight I would say RASHNEESHPURAM in my head over and over and over until I wanted to puke. When I expressed this to another Mepron/zith user, they said that was EXACTLY the type of word that would go round and round in THEIR head too!!
Hopefully someone who has more experience will chime in here and help us both out.
OCD, Hypercaucus, Babs, lyme,- anyone know more? Trails Posted by trails (Member # 1620) on :
ooopppps- hyperacusis.
now THAT word might start going on and on and on....
Posted by ebrischoux (Member # 7281) on :
Hi there: Hyperacusis is hyperacute hearing. My son has suffered from this since he was about 2yrs old and has gotten progressively worse. I am told it is due to lyme as well as the OCD.
I sure hope the Mepron does not have the same affect on him that you experienced. He cant take anymore OCD issues. Right now he is on break from abx and as in the past his lyme is flaring. Very OCD, anxious, perseverative...Very Autistic...
He wears headphones for the hyperacusis but I sure would love for him to have that cured.... Along with the OCD...His quality of life would be so much better...Eileen
Posted by quic (Member # 5262) on :
I can relate. My words were "glioblastoma multiforme". I had an aunt who was dying of it and I heard the words in my head 24/7. Definitely enough to make you want to puke. You just want to yell, "Shut the f--- up."
For me, regular oral abx were working, but agonizingly slow. They never seemed to penetrate the blood brain barrier very well. I finally used a rife machine which undoubtable got into my brain. I had a very major OCD herx. Then a smaller one a month later (mentioned above), and then that was it.
My first herx on the rife was unbelievable. So severe that I have patchy memory loss over a 2-3 day period.
Now, gone is the OCD, over emotional stuff, aggression, etc. I still get very tiny flares of these, but it is pretty easy to handle. They are about 4 weeks apart and are diminishing each time.
It sounds like you have alot to cope with. Best of luck to you and your son.
- Mike
Posted by gwenb (Member # 7217) on :
Hi Mike,
How much better where you after the two rife sessions? I am going that route myself shortly and am trying to educate myself as much as possible.
Thanks for any advice.
Gwen
Posted by trails (Member # 1620) on :
Thanks for the definition of hyperacusis.
I don't have that-knock on wood and thank GOD!
I am sorry about your son! I worked with many autistic and asberger's kids as an art teacher. I miss the kids so much! I dont miss the stress of the job though.
It must be very difficult to communicate about symptoms and needs with so much going on with your son. bless your heart.
Quic--that is exactly the type of word that would get stuck on some tape playing in your head if you had this disease. Glad you can find relief in rife. I havent tried but will be too broke after all the lyme treatment to do anything but maybe buy a rock to crawl under.
being silly---but also serious.
Will others come round and tell us if OCD has been a part of YOUR experience with Lyme?
Posted by quic (Member # 5262) on :
Hi Gwen,
My first rife session was in mid-June. It really hit me like a ton of bricks. I didn't actually feel it until the day after I rifed. I was twitching like you wouldn't believe, nerves rumbling, memory loss and fog, the works....just so toxic feeling. Later, I found out that I wasn't even doing it the right way. Good thing, because I probably got a lower dose of it. Who knows what I could have done to myself. I tend to dive into things too fast. I used the rife machine for only 8 minutes that time.
I was a little scared of the thing after that, but after the herx, I felt alot better. I picked it up again in late July. At that point, I could feel nerve rumblings and twitching while I was using it. I used it about 5 days a week and went slow. I never got a major herx again like the first one though. I was also trying to get off abx at the time so I was a week off abx. At the end of July and into the beginning of August I was herxing again. I was still rifing, but also, I started abx again the first week of August because I had to go away on a business trip and I didn't want to take the rife with me.
The first weekend in August was my last big herx. It was major, but not like the one in June. I had alot of depression and was very emotional, alot of crying...I just couldn't shake it. I think starting Ketek again did it that time, but the rife machine was giving me good results as well.
August was a turning point for me. Since then I generally rife 5 days a week. I tried going off abx for 3 weeks in September but things started slowly coming back. So I'm doing both now again.
For me, as long as I keep mixing things up, I seem to make progress. It seems the lyme can adjust to anything that I do that is consistent for too long.
Lately, I've moved my dosage of Ketek from 2 400mg pills 12 hours apart, to taking them both in the morning. That seems to have stirred things up again, but there seems to be less to stir up.
Also, I don't feel the twitching/cramping/etc. as much while I using the rife machine anymore. It seems that the bacterial load has been significantly reduced.
Hope this helps. I've been at this since Feb. 2004
- Mike
Posted by becbec (Member # 8259) on :
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My heart completely goes out to you. I had severe hyperacusis for 2.5+ years as part of my illness. (At that point I still didn't know I had chronic Lyme.) It started after exposure to a super loud noise--jackhammer drilling at close range--which is a common way for hyperacusis to begin. (I'm defning hyperacusis as a collapsed tolerance to normal, environmental sounds.)
My life was pure hell for years; at first I had to wear both earplugs and headphones just to tolerate the buzzing of the computer. Could not be around people or go out at all because of the noise. My audiologist measured by tolerance at 30 db, about the rustling of paper.
Anyway, I'm posting because my hyperacusis was cured with modified tinnitus retraining therapy, which involved graded exposure to white noise emitted by hearing aid-like devices placed in the ears. (The devices are called viennatones...you can do a search on them) It took over two years, but my tolerance went back to normal.
I still have the normal Lyme problems with screening noise and stimulation, but my hyperacusis hell has been over a long time. I wonder if this therapy would help your son? Contact me privately for more info if you like.
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Bec