new here...son w/yme and PANDAS?

[frikfrak]

hi,

 

my son, now 22, diagnosed with lyme and rocky mountain spotted fever in Dec. 09.

Been treating every since but he has only gotten worse, all neurological, nothing physical.

 

Recently positive for babesia in 2012. Again, still treating.

 

I've been trying to research anything that might explain why his neurological symptoms are getting worse and now I think just maybe PANDAS is it.

 

I had a strep infection a couple of months ago so they checked him out. Our family doc put him on amoxicillin for 10 days because she said his throat looked red (his culture came back negative).

 

When I mentioned this to his LLMD, she did blood work and his ASO titers (strep infection, yes?) is very high so she put him on Moxatag for the month.

 

In looking back thru years of blood work, I notice his ASO numbers have always been high.

 

My son did have episodes of OCD about 6 months after being diagnosed with lyme.

 

He's even worse now.....his main symptom is uncontrollable laughing, been doing it since 1st diagnosed but its gotten worse over the years...now its constant all day and into the night. None of his docs can ever figure out this symptom or seem to give us anything that's helps.

 

Now getting to sleep is terrible, every night its a challenge.

 

Some docs we've taken him to have said schizophrenia but others, including an "expect" in this field said no.

 

He's so "lost and confused" that we can't ask him any questions, he can't answer us...he only says 1 word phrases and even those usually aren't the appropriate response to our question.

 

I don't know much about PANDAS...is there hope? cure? can he get better? or is this like lyme, treat and pray?

 

ANY help would be greatly appreciated, we just don't know what to do anymore

 

thank you

His Mom

 

 

 

 

[Chemar]

Welcome to the forum frikfrak

 

I am just bumping your introductory post up so other members can respond.

 

I see you also posted to some existing threads so hope you will get answers there too.

 

all the best and hope things get better for your son.

[Mayzoo]

The uncontrollable laughing coupled with sleep difficulties sounds like it could be yeast overgrowth in the gut, which is common with long term antibiotics. We are having bouts of inappropriate laughter again right now too. There are several ways to access yeast. Check with your LLMD on this one.

 

Odds are he has numerous things going on right now, like most of our kids. I attempt to tackle one major hurdle at a time, and attempt to add/remove one supplement/medication at a time so I have a good idea what is working and what is not. Sometimes overcoming one major hurdle either causes or uncovers another major hurdle I was previously unaware of. Still, for every hurdle overcome is like winning a battle in the war.

 

Also, keeping a running log of medication, supplements, and behaviours is vital to the care of these kids/young adults. Sometimes you do not know what is going is on until you review the log. For example, I started my kiddo on B-6. Then, very slowly over a two week time period her she started exhibiting autistic behaviours we had never seen from her before. Three weeks after beginning the b-6, I started reviewing the log and realized the addition of that supplement was right in line with the addition of these current symptoms. With a google search I found b-6 helps autistic behaviours unless a child is receiving too much, then it aggravates autistic behaviours. So, under the assumption she was getting too much, I removed it completely for the time, and she is slowly losing these new behaviours. I will likely add in again later at a lower dose and watch closely. Without the log, I would have to wrack my brain to attempt to remember what had changed around that time. After a while, everything runs together and singling out a particular event that may have triggered another event becomes almost impossible without a log.

 

We took our kiddo to a PANDAS friendly immunologist and she is being evaluated for numerous conditions that we may have been overlooked up until now since so many of the symptoms are overlapping on many of these conditions.

 

This is what our log looks like:

 

10/20/12 Pedi SX Major regression of SX

DX PANDAS

TX Keflex 500mg QAM Zithromax 250 mg ½ QPM prednisone 20mg X2 days then titrate down as directed.

 

02/05/13 ENT SX Review medical HX for T & A

DX Chronic Tonsilitis

TX Bi-lateral T & A

 

02/20/13 ENT Bi-lateral T & A surgery

 

02/28/13 LAB DX Tonsils cultured actinomyces bacteria

ENT TX DC Keflex and give Amoxicillin X10days then restart Keflex. I declined to stop keflex and opted

out of amoxicillin. Made Appt with Dr Rao

Edited May 12, 2013 by Mayzoo

[frikfrak]

Hello,

 

Yes, thank you. I too keep a log of everything. I create a calendar each month showing his meds and supplements then write on each day how its going, ie, laughing bad / on/off, how he fell asleep and such.

 

Can't see to find anything so far that helps. Like I said, he's been laughing since this started 3+ years ago, just not this bad.

 

At about 3 months after diagnosis he became extremely angry/cursing and scary. The doctor at the time wouldn't see him again unless my husband came to the appt. with us. Then roughly couple months later started laughing and continues still.

 

I prefer him being angry

 

Anyway, thank you for replying. If anything gets better, I'll post.

 

His Mom

[LNN]

Can you share a brief description of what treatments/medications you've tried? Has he been tested for other infections such as bartonella, toxoplasmosis or parvo? Viruses? Have you looked into issues that can sometimes accompany lyme, such as pyroluria, mold, or heavy metals? Have you tested for yeast or done a stool analysis for parasites, e coli, or other sources of gut/bowel issues? Has his lyme treatment included any cyst-busters like tindamax or flagyl, any biofilm treatments?

 

I ask because sometimes it's not one problem but a mix of problems that we need to unravel. Those of us whose kids have PANS - lyme, mycoplasma, viral infections...sometimes feel like we collect labels for our kids the way some moms collect soccer trophies. But eventually, as we conquer each obstacle, we see more and more of our old kid return.

 

For the symptoms, some of us use excel to track symptoms. A simple way is to give each day a rating - 1-10. 10 being the absolute worst, 1 being a really good day. On the top row of excel, type in the day of the year - you can type 1-365 or the date, depending on how well you know excel. On the row below, type you day's number score. Just before a doctor's appt, you can make a chart of the day/rating and type or write in what event may have triggered a change. So if on the 29th day., you start a certain antibiotic and see a leap in negative behaviors, you can write above the 29th day "started azithromycin" or "had a fever" or "went gluten free" If you know excel well, you can track more than one symptom per day - e.g. OCD=5, insomnia = 3, then make a stacked chart.

 

Here's an article on toxoplasmosis that links it to schizophrenic symptoms:

http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/308873/

and one on how toxins can complicate the picture:

http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html

 

Don't give up. There are lots of research parents on this forum and if you provide whatever information you feel comfortable, I'm sure there's someone who can offer some things to look into.

[frikfrak]

Hello,

 

Yes, my son has been on numerous abx...he's positive for lyme (or was) all bands positive, rocky mountain fever and babesia last year. Been tested for all other co-infection, so far all negative, although tested for babesia back in 2009 and was negative then positive in 2012.

 

Yes, he's currently positive for candida, his mycoplasma pneumonia is positive. See LLMD next week and plan on addressing these issues.

 

He is taking a lot of probiotics daily and nystatin with his abx.

 

What is really concerning us is his uncontrollable laughing..its gotten worse, its constant for literally all day long...no breaks.

 

It must be so hard on him, his mind and body.

 

If anyone has ever had this or seen this and has any supplements or meds to help calm him quickly, I'd appreciate hearing from you.

I am going to start a new thread with this.

 

thanks

[Mayzoo]

My daughter is taking the cheaper version of Enhansa for yeast overgrowth (candida). Here is a link:

 

http://leesilsby.com/enhansa-homepage

 

 

We take what is called BCM-95, which appears to be the same thing as Enhansa but less expensive. Almost all of these on this page are Bio-enhanced. You just have to read it. Curcumin 95 is not necessarily bio-enhanced:

 

http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Daps&field-keywords=BCM-95

Edited May 13, 2013 by Mayzoo

[Dedee]

I am suprised that with your son being so severe that your LLMD hasn't considered IV antibiotics. If his quality of life is affected to that extent then IV antibiotics should be an alternative. In my opinion, if your LLMD hasn't offered that then maybe you should bring it up as an option. JMHO.

 

Dedee

[rowingmom]

I agree with Dedee. You have mentioned a couple of times that you have a Lyme Literate psychologist - is this doctor an MD versed in ILADS protocols? I think that if we had not had improvement after 4 years of treatment, I would be searching for another protocol or another doctor. Bartonella can cause psych issues, and as you have seen these infections sometimes don't show up with testing, or can change from seronegative to positive after a time. Has your doctor considered bartonella? Have you been addressing all forms of infection - cyst, intracellular, extracellular?

[frikfrak]

Hello,

 

Yes he was on IV doxycycline for 9 months but didn't get any better. I have brought it back up and they say it wouldn't help. I know, I know....going to bring it up again, see LLMD next week.

 

Yes they are considering Bartonella, His meds for the last 6 months consisted of Omnicef / tindamax / Mepron / Zithromax / Malarone / Bactrim DS / Factive / Valtrex / Moxatag and I'm sure a couple others I can't think of. He has been on rifampin in the past as well as many others. Currently on Moxatag / Flagyl / Malarone and Nystatin..

 

We are seeing a very highly regarded LLMD.

 

We are going to get a EEG to see if he's having seizures, hopefully within the next couple of weeks.

 

I must be dropping the ball somewhere....we been treating ever since we got the blood test back with positive lyme and RMSF over 3 years ago.

 

WHAT THE HECK AM I DOING WRONG...I do everything they say, give him the abx and supplements everyday ON TIME.

 

We've brought him to countless docs. His psych doc is considered the "best" in this part of the country....

 

This has consumed my life...I am online everyday, every hour looking for "something".

 

sorry to whine....i'm just going crazy trying to "fix" him. I know he's in there somewhere...I just have to get him out. This is mentally exhausting, I'm so tired all the time.

 

His Mom

[frikfrak]

One more thing would anyone be able to give my some LLMD's names in NJ and also maybe a neurologist who believes in lyme and PANDAS...my son is over 18, so not a child.

 

Always good to know of others.

 

thank you all for putting up with me

His Mom

[mama2alex]

I think you have been a great mom and have done everything right, but I think the LLMD is missing something. Even the most well-regarded doctors aren't perfect. LLM mentioned mold, pyluria and heavy metals. These issues can block healing from Lyme/co-infections. Has he been tested for any of these, or in the case of mold, has your home been tested/inspected? I've talked to/heard of several people who were not getting better, then addressed mold in their home, then were able to heal from Lyme. I know others have had this experience with pyluria, and heavy metals can do it too.

 

You can search on these topics and find informative discussions on this forum, or just post a specific question about any of these topics and folks will help you out.

 

Also, this is a great blog which talks about all 3, plus other Lyme-related topics: http://betterhealthguy.com/joomla/index.php