It just won't stop will it?

[Bill]

I included a brief history for folks below. I know that I can not keep parents, children, and the symptoms straight. (Overall a very long tedious post!)

 

So he's been doing pretty good making sloooooow progress. But, count our blessings that he's not shown any one step back issues. Sure, OCD moves around like water in a squeezed balloon but overall - and if we look at it in 6 month increments - still moving forward.

 

And then he came home Friday (February 10th) with a bald patch on the top of his head. He finally admitted to pulling his hair out. We watched him all weekend, seemed fine. Deep breath and hope it was a fluke. He came home today with the bald patch larger! This is a new symptom. He has picked the skin at his fingertips relentlessly for years but never hair.

 

My mistake in making too many changes recently to make sense of it. Prozac was reduced from 20mg to 10mg 13 January. Added Cat's Claw at 500mg twice daily January 27th. Did Artemisinin at 100mg twice daily for a few days and then read that it should be cycled at higher doses so went to 300mg twice daily February 7th. Had added NAC at 600mg twice daily at the end of December.

 

I stopped the Artemisinin Friday night as planned. I stopped the NAC Saturday morning. Tonight, dropping the Cats Claw. Call is in to the Psychiatrist.

 

My self analysis thus far:

 

I do not think it was lowering the Prozac. Prozac controlled his anger - never touched his OCD or anxiety issues. His anger has not increased with lowering the dose so I think that's a good sign.

 

I don't think adding the NAC now almost 7 weeks ago would be causing this. If anything, NAC is one of those things that's been used to treat Trichotillomania (though success is questionable).

 

So that leaves the Cat's Claw which I added for Lyme and the Artemisinin that I added for babesia. He's not showing positive for lyme bacteria any longer (ABX for some 16+ months now) but I thought that I would add it just to see if it stirred something up. In hindsight - I'm not feeling too positive about that now. He has never tested positive for babesia but, something seems to be slowing his progress. Everything I've read suggests that Lyme is difficult to "cure" if babesia is present. So why not, throw something for babesia at him and see what happens. I was looking for sluggishness, fever, a white flag over his head with the babesia calling for a truce.... Again, not feeling real positive about that idea now especially now that I realize I changed so much in so short of a time. I've gotten complacent given his general lack of response to anything.

 

And of course I could be completely wrong. The Trichotillomania may not have anything to do with any of the above. It could be just another wonderful symptom my son will have to deal with which for him means trying to ignore it or making excuses for it (OCD is still his best friend).

 

Well, we already have a doctors appointment (LLMD) this Wednesday. IVIG is now approved again; next appointment is 26/27 March.

 

Medicine and supplements prior to this:

Prozac 10mg daily

Minocycline 50mg X 2 daily

Azithromycin 250mg X 2 daily

Tindamax 500mg tablet Fri pm, Sat am + pm, Sun am only

 

Methyl B-12 2mg daily

Vitamin D 2,000 IU daily

Vitamin C 500mg daily daily

Milk Thistle 250mg standardized to 80% twice daily

Artemisinin 300mg twice daily through 10 February

CoQ10 200mg X 2 daily

Vitamin E 400 I.U.

Cat's Claw 500mg X 2

NAC 600 mg X 2

Probiotic Several (Acidophilus + Bifidus, 8B)

Saccharomyces Boulardii + MOS 5B/capsule X 1 daily (Probiotics vary)

 

In addition to the below, my son does not show obvious reactions to changes in medication, treatments, or supplements like many here. He tends to just plug along making very slow progress.

 

I'm here for my son. Raging for several months when he was four (2001). Raging again at 7 plus unusual gait, dilated pupils, anxiety, and general loss of fine motor movement. Diagnosed with dystonia at age 7. Neurologist ignored the behavioral changes saying they were not related. Every 18 months or so behavior would get a little worse and shortly thereafter so would the Dystonia. Eventually diagnosed with generalized genetic dystonia with that and the psychiatric symptoms being treated separately. There is no dystonia in either family. Doctors ignored our pleas to look deeper for years. You guys know the story.

 

Severe OCD when he was 11 brought us to the world of PANDAS. Plasmapheresis six months later had no impact. Six months later, he tested positive for Lyme and Bartonella. The doctors disagree on how long he's had Lyme.

 

We are now into heavy ABX treatment starting 10/2010. His pupils are sometimes normal! Some of his dystonia is less. His tics are greater. His OCD is relentless. But - we are hopeful and thank everyone in these forums.

 

May 2011 - Pupils appear normal more and more often! Dystonia is worse. Tics are better. OCD/anxiety/behavior have all been improving but very slowly and not without some push by his parents! Math scores went from a 'D' in the second quarter to a 'B' in the 3rd quarter. He did math homework the other day by himself - perhaps I'm dreaming? His reading has never been affected by any of this. He does not herx and except for his eyes, all of his improvements could easily be attributed to changes over time. His eyes were demon eyes (Supernatural fans will know what I'm talking about) for years. And now - they are the prettiest blue. So, we continue.....

 

IVIG on 27/28 June 2011. Mood and behavior - already pretty good - improved immediately. Unfortunately, not much else to write about (7/17/2011). OCD seems to be oh so slowly receding but can not really attribute that to the IVIG.

 

16 October 2011:

IVIG (2nd) on 13/14 September 2011. Nothing really to report after a month after this 2nd IVIG. OCD is a little worse. I suspect the stress of school but who knows. No discernible progress regarding dystonia but son reports that it is easier to write and for longer periods of time. Eyes remain good.

 

21 December 2011

IVIG #3 was on 16/17 November. Saw some regression in behavior but nothing really notable. Suddenly realized about two weeks ago that he can extend both arms in front palms down and up - Something he has not been able to do in several years. His pupils are becoming dilated again. We stopped the augmentin in mid October to get his bowels under control. So, pupils dilating again could be because of dropping the ABX or latest IVIG. Overall, still improving slooooooowly.

 

Pupils recovered and are now normal again.

 

8 January 2012

IVIG #4 is (was) scheduled for next week. Received the insurance denial yesterday even though they list variable immunodeficiency as being covered. Told my son we might not be going figuring he'd be happy. He was not. Why? "I think it's helping." !!!!!!!!!!!!!!! Pupils are returning to normal. Still slow progress. We hiked on New Years day. Not far but up and down a small mountain; maybe 1.6mi round trip. His walking was none worse for it. He is also doing 80% of his shower by himself. He's been a little "mouthy" but in the friendly way. We think his prozac is too high and are trying to reach his psychiatrist to see about going down to 10mg. 2012 is the year we take him off SSRIs - my hope.

 

1 February 2012

Straight A's for second quarter - including math. Dropped to 10mg prozac daily and continues to do fine. IVIG is approved again. Next appointment is 26/27 March.

[Suzan]

Hi, I don't know the answer for you but I lean towards the Cats Claw. That stuff is powerful and it gives dd10 unwanted thoughts of death and increased anxiety when I increase her dose. For us, it's a very big part of our treatment but I had to increase her dose very slowly. I gave one pill every other day for two weeks until her symptoms improved and then added one day at a time and only increased when symptoms improved. She could always tell without me telling her when I would increase as the unwanted thoughts would come back.

 

Good luck. I'm sorry you are going through all this!

 

Susan

[Bill]

Hi, I don't know the answer for you but I lean towards the Cats Claw. That stuff is powerful and it gives dd10 unwanted thoughts of death and increased anxiety when I increase her dose. For us, it's a very big part of our treatment but I had to increase her dose very slowly. I gave one pill every other day for two weeks until her symptoms improved and then added one day at a time and only increased when symptoms improved. She could always tell without me telling her when I would increase as the unwanted thoughts would come back.

 

Good luck. I'm sorry you are going through all this!

 

Susan

 

Thanks so much for your reply! I wasn't really leaning towards the Cats Claw as I didn't recall this being particularly strong in the capsule form. Your post is a good reminder to me though.

 

Hope you are doing better!

 

bill

[momcap]

There's lots in your post I can relate to with DS8. "Demon eyes", oh ya, I know exactly what you mean. DS's pupils were so dilated at times that they looked black. I called them "cat's eyes". When his eyes looked like that he had a wildness in his expression, that you could say looked "possessed", even if his demeanor was calm. DS also had 2 episodes of trichotillomania - VERY similar to your story. One day he had a tiny bald patch on the back of his head. He finally admitted to pulling it out when he was lying in bed at night. Then several days later it was larger. I hate to tell you, but it takes a loooooong time to grow back in if it's been plucked to the root. Ugh. I don't know what triggered it for DS, and it hasn't happened again (it's been a year and it's finally filled back in). DS was on prophylactic amoxicillin for PANDAS at the time, and we did not change anything. He was not being treated for lyme yet, and I just chalked it up to yet another strange OCD/PANDAS symptom.

 

So I wonder if this has nothing to do with the things you've added lately. Perhaps it's a coincidence, or an exposure to strep, or ??? If it is related to anything on the list of things he takes I am also leaning towards the Cats Claw. I don't know much about it, but my experience with artemisinin has been pretty benign. Maybe my boys don't have babesia, but they do/did have several of the symptoms. They didn't react at all to the artemisinin, even thought they have had pretty severe herxes from other things. I asked my LLMD if that means they don't have babesia and she said most people don't herx with artemisinin so we should continue until 2 months after all babs symptoms are gone.

 

I hope you find some answers and your son feels better soon! I'm glad he's already made so much progress!

[tpotter]

Hi, I don't know the answer for you but I lean towards the Cats Claw. That stuff is powerful and it gives dd10 unwanted thoughts of death and increased anxiety when I increase her dose. For us, it's a very big part of our treatment but I had to increase her dose very slowly. I gave one pill every other day for two weeks until her symptoms improved and then added one day at a time and only increased when symptoms improved. She could always tell without me telling her when I would increase as the unwanted thoughts would come back.

 

Good luck. I'm sorry you are going through all this!

 

Susan

 

Thanks so much for your reply! I wasn't really leaning towards the Cats Claw as I didn't recall this being particularly strong in the capsule form. Your post is a good reminder to me though.

 

Hope you are doing better!

 

bill

 

Bill, strep can cause Trich. Have you checked her for strep?

[lyme_mom]

Hi, I don't know the answer for you but I lean towards the Cats Claw. That stuff is powerful and it gives dd10 unwanted thoughts of death and increased anxiety when I increase her dose. For us, it's a very big part of our treatment but I had to increase her dose very slowly. I gave one pill every other day for two weeks until her symptoms improved and then added one day at a time and only increased when symptoms improved. She could always tell without me telling her when I would increase as the unwanted thoughts would come back.

 

Good luck. I'm sorry you are going through all this!

 

Susan

 

Thanks so much for your reply! I wasn't really leaning towards the Cats Claw as I didn't recall this being particularly strong in the capsule form. Your post is a good reminder to me though.

 

Hope you are doing better!

 

bill

 

Bill, strep can cause Trich. Have you checked her for strep?

Lyme can cause any kind of symptom. Cats claw is extremely potent for some people. I met a woman who had severe psychological symptoms go away on one drop am/pm. I was amazed. My llmd said for some u don't need much and it kills Lyme and coinfections so hard to know what bugs it's killing. Sounds likely it's a herx. It's anti cancer too so I bet it kills a lot more than we even know.

[Orion]

Our neurologist feels that NAC can affect biofilms (at least for Strep and Mycoplasma pneumoniae). So this could be part of a herx reaction?

[lfran]

Just wanted to say, since my DS10 started NAC about 2 months ago, he has improved enormously in his schoolwork. Getting a lot more done, and the quality has been greatly improved as well. Teacher keeps saying what a change she has noticed. Tics have varied -- some days increased, some days decreased.

 

In the Yale NAC protocol for their current study on tics and OCD, they started with 600 mg 2x day for 2 weeks, then increased to 1200 mg 2x day for 10 weeks. I think they took kids aged 8 and up, so that might be a reference point for dosages. (I think they are taking participants, if anyone wants to enroll. Not sure if you have to be local or not).

 

Our neurologist feels that NAC can affect biofilms (at least for Strep and Mycoplasma pneumoniae). So this could be part of a herx reaction?

[Bill]

The one week update - he is still admitting to some pulling hair. Four today. So it's not stopped but at least the bald spot is not getting noticeably larger. And to all who said "Cat's Claw," our doctor agrees. She may have mentioned several times about the dosage I was giving him . I've stopped of course, will restart the NAC and add methyl folate as soon as it arrives, wait another week and then restart just the Artemisinin using a 2 week on 2 week off pulsing strategy working from 100mg twice a day to 400mg twice a day. We will just hold off on the Cat's Claw for now.

 

Now here's the Friday night mystery to share. He has a night time routine that includes time on the toilet and then his shower. Showers have been down to 10 minutes for a long time but toilet time stays 30 minutes plus. Over the last couple of months, he's had maybe one period of time that lasted for several days when toilet time has been 25 minutes or so on average.

 

Since the hair pulling last Friday night, toilet time that night was 38 minutes. Somehow we missed recording Saturday night. For the last 6 nights including tonight - his toilet time average has been 16 minutes with a range of 11-18 minutes.

 

This illness has a weird sense of humor.

 

And through it all - his mood has remained extremely positive.

 

BTW - I don't read all the messages but what I learned by posting my son's experience and talking to our doctor is that trichtotillimania is not an uncommon occurrence during treatment for neurological lyme (I'm lumping everything under the neuro lyme term of course). The good news is that I got a consensus that when caused by "lyme" (or whatever buggie actually causes it), it seems to be temporary. This is very good news as non-lyme (traditional?) trichotillomania is considered very difficult to treat. I remember when we thought our son was trending toward ODD (oppositional defiant disorder). Same scary stats - very hard to treat. But - we've found that it is resolving with treatment for lyme. At this point - it it 100% under control. I won't say resolved until he is off prozac completely though (10mg to go).

 

Just wanted to post that for anyone new to the site. While our kids display some really scary psychological symptoms - they appear to be treatable with time and the right treatment. So don't get too freaked out by what you may read on the Internet for many of the psychological disorders experienced here. It seems our kids respond positively with time and proper treatment.

 

(me knocking on wood now)

 

bill

[JuliaFaith]

restart just the Artemisinin using a 2 week on 2 week off pulsing strategy working from 100mg twice a day to 400mg twice a day.

Artemisinin really affected my son whenever he was on it once it was above 300mg/day. Glad to see that you are pulsing and starting at 100 mg twice a day instead of the higher dosage as before. Doctor finally just took him off of it, maybe just temporarily. Before stopping she kept him at 200 mg/day then increased 2 days a week at 400 mg/day.

 

Best wishes on continued healing!

Edited February 17, 2012 by JuliaFaith