Need Help for my 11 year old - Lyme, many SNPs, PANDAS, Aspergers, Anxiety

[bjberglund]

I need help with my 11 year old. He has been diagnosed with Lyme, anxiety, aspergers and PANDAS. We recently received his 23andme results and he has the following SNPs:

Homo: COMT V158M, COMT H62H, MAO-A Rs97R, MTRR-11 A664A, ACE Del16
Hetero: VDR Bsm, VDR Taq, MTHFR C677T, MTHFR A1298C, AHCY-01, AHCY-19, CBS C699T, CBS A360A

We treated the Lyme for 3 month with abx but stopped 3 weeks ago because he was having such a hard time. Our plan is to start Samento/Banderol soon. He is extremely depressed, irritable, high anxiety over the littlest problems, very difficult to get him to school. We are working with a biomed dr, chiro and lyme naturopath but he's just gotten worse over the past few months. Now that we have the 23andme results I feel like there is a whole new host of problems that we need to address. I've downloaded Amy Yasko's recommendations and now need to discuss them with his biomed dr but it looks as though we first need lay the groundwork by adding in the all-in-one general vitamin and get his glutamate/gaba levels in balance with the Be Calm Spray. I'm just overwhelmed.

Does anyone have any other suggestions based on the SNPs noted above? What about SSRI's? I have tried to avoid them but he is seriously depressed. I give him Xanax when he is particularly anxious or having a panic attack but I feel like he needs something more. I thought I read somewhere that SSRI's aren't recommended if you have these SNPs.

Any thoughts or recommendations would be greatly appreciated. We are really struggling.

 

[barbc56]

It sounds like your son may need a complete physical followed up by a possible.psychiatric workup. Any SSRI's would need to be determined after you get these as anxiety/depression may be from a physical condition. Actually, anxiety and depression are physical conditions caused by brain chemistry

The problem with the 23andME is that it only shows some of the SNPs out of the many,sorry can't remember the number, so what you see may not be accurate.

I do well with the SSRI but not the SNRIs as they are too stimulating. But each of us react differently to medications, so I can only tell you my experience.

I took Zoloft for many years prior to my getting sick. My doctor raised the dosage for pain and for me, it does help. SSRI/SSNIs are believed to have some neuroprotective effects but I don't believe this has not been medically proven but will look for the citations.

It's so hard when are children suffer isn't it.

Good luck with whatever path you choose and welcome to the PR!!!!

 

[minkeygirl]

I was looking some stuff up for a friend who most likely has Lyme's and Bartonella and I thought I read that the antibiotics can cause depression as well as the disease. Maybe once he's off the ABX for awhile he'll stabilize a little better.

Good luck

 

[knackers323]

I would very much recommend trying natural alternatives like St. John wart and lithium orotate etc. before ssri s. ssri s can help but can have terrible side effects be hard to get off.

With all he has to deal with at his age, no wonder the poor little bloke is depressed. It just isn't fair.

 

[filfla4]

I don't know if this helps, but here goes...

My 15yr old son was diagnosed with Dyspraxia aged 8yrs. He tested positive for Lyme by PCR, confirmed by DNA sequencing 20 months ago. Last winter he was on Azithro & Doxy abx for 9 months. It was a tough regimen. My LLMD also prescribed "Daily Health Support" which you can find here: http://www.kalidashop.com/en/daily-health-support.html and high doses of injectable VitB12. After a break of 4 months from the abx, he still tested positive. He is now on Samento/Banderol, plus VSL-3 (probiotic), Glucaplex and Choline-DHA. He is doing better but has 4-weekly cycles where for a week to 10 days he simply cannot function. He is exhausted and brain fogged. This fits in with the lifecycle of the sprochetes and it's amazing how he bounces back like clockwork. We are planning to have him treated by IV abx in the summer months.

Where are you located Bjberglund?

 

[Daffodil]

there is a psychiatrist that deals with the gut and maybe infections..i think his name is dr. mike maes. i believe he treats children.

i have cfs/lyme now for over 20 years. my sister is developmentally and mentally disabled, on the autism spectrum. she has been sick and in hospitals and group homes her whole life, since she was 6. she is 36 now. if only i had known about all this back then. i want to help her now but i am sick myself...ugh what a nightmare. just thinking about these mountains to climb is so overwhelming.

 

[ahmo]

Dr. Klinghardt deals w/ lyme and autism. Here's a pdf. You're right, there will be a lot of learning. but it'll get easier, this is an excellent community for help. I've learned so much about ASD, lyme, and SNPs at the yahoo GAPSdiet forum. GAPS diet was developed by Neurologist Natasha Campbell-McBride to heal her son from autism. Also linking a fascinating video re the role of brain inflammation from histamines/mast cells in neurological problems. The MAO ++ means there's inherently a histamine problem. If it's possible to delay SSRIs, you'd be wise to do so. http://www.klinghardtacademy.com/images/stories/powerpoints/treatinglyme 2010.pdf
‪‘Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬
https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q

 

[whodathunkit]

@bjberglund: sorry to hear of all your travails with your son. It's very hard to watch your child suffer like that, for sure.

Just thought I'd add to the discussion about SSRI's. I've taken them, I hate them, and I advise only using them after you've tried everything else, as a last resort. They can mess up your biochemistry pretty badly.

I just started some low dose lithium orotate a few days ago and it has really seemed to take the edge off the anxiety and irritability that I was experiencing with methylation supps. It worked quickly, too. I started taking it because I read that it helps the body make use of B-12...even if you have high circulating levels of it, that doesn't necessarily mean it's getting where it needs to go. So I tried the lithium and just like people here say, it does seem to help with the mood problems. Dunno if it's helping the B-12 go where it's needed yet, LOL, but I'm happy enough with it to keep taking it for a while.

I don't have all your son's problems and don't know what my snp's are, but I have suffered from depression/dysthymia my entire life, so I have quite a bit of experience with mood disorders. The right diet/eating lifestyle is the foundation for all health, including (or perhaps especially) mental health. After that, the supplements and info I've found on this board have done me as much or more good as anything I've ever tried, including pharmaceuticals.

All the best to you and your son!

 

[ahmo]

@bjberglund I've just watched the vid presentation from which the pdf I linked above comes. It's very illuminating, about just what your son's going through, and how he's had so much success dealing with these issues. 2 hours, worth every minute. And the pdf details his methods. Best to you, ahmo

Klinghardt: Autism, Lyme, Pyroluria
http://www.youtube.com/watch?feature=player_detailpage&v=-z3kRDYcvhA

 

[xchocoholic]

Fwiw, forums dedicated to treating children may have better info than we do. Off the top of my head, I'd suggest joining the trying low oxalate yahoo board. Most of the members are parents who've tried multiple biomedical protocals and later found out that oxalates were problematic too. So they're familiar with your son's condition. Susan Owens, the list owner is available for consult but I'm not sure if she charges. She has an excellent resume tho.

Other children's biomedical forums may be helpful too.

Hope he feels better soon. X

 

[stridor]

Has your son had a heavy metals test yet?