Autism & Lyme Link

[MamaOnAMission]

ok, my girl is on her antibiotics and prozac for the debilitating ocd. she is a bit better but is still stuck in her own world. i am starting to think she is on the spectrum.once in awhile she has a friend,but its more like the friend is an obsession. if she has no friends, it does not phase her. she will sit front of the tv o rputer and just get stuck. if u take it away, she is confused ad agitated and wants to bolt out of the house 24/7. you can't be with her unless u want to die of heart attack. anyway i was wondering about the link between autism and lyme and if anyone has looked into it?? any info. is appreciated. thanks!

[colleenrn]

Here are two links that talk about the connection.

 

http://www.medicalnewstoday.com/releases/113734.php

 

http://www.lymeinducedautism.com/

[NancyD]

I definitely believe there is a causal link between autism and underlying bacterial and viral infections -- whether it be Lyme, other TBIs, MycoP, PANDAS/PANS, etc. Once you identify and begin treating the various infections (and usually there are multiple), you will often see many of the ASD symptoms begin to disappear. But then you have to figure out why your child is susceptible to these infections and treat it -- low vitamin D, problems with the methylation cycle, KPU, mitochondria, etc.

Edited April 20, 2012 by NancyD

[MamaOnAMission]

she had tons of tests done and it ALL comes back negative, what do u do then. all we have to go on is bartonella and lyme, but we have no idea y she gets these infections

[tpotter]

she had tons of tests done and it ALL comes back negative, what do u do then. all we have to go on is bartonella and lyme, but we have no idea y she gets these infections

 

 

You need to see an LLMD. Lyme and co-infections is a clinical dx, because the tests are so inaccurate. DH was the only one in our family who actually tested positive, but everyone else had the clinical symptoms. After several months of tx, DS16 still appeared to not have it, and then we started IV abx (a different type) for a different problem, and stretch marks he'd had for several years (that the LLMD thought might be Bartonella) started dramatically fading. DX was made by response to tx, the stretch marks (a clinical symptom), as well as other symptoms. PM me for an LLMD that we use.

[hugs2day]

What supplements are you trying? Supplements made a huge difference for my son. He was diagnosed with autism at 3 and pandas at 5. He has a long history of infections and I do suspect lyme/bart. Antibiotics are now critical for him but prior to abx, every supplement I added gave great benefit including cholesterol.

 

You can research that therapy on http://www.greatplainslaboratory.com/home/eng/tourettetics.asp

 

 

she had tons of tests done and it ALL comes back negative, what do u do then. all we have to go on is bartonella and lyme, but we have no idea y she gets these infections

[MamaOnAMission]

i see the top LLMD in conneticut. she's being treated for lyme/bartonella. she is on bactrim and mino. she's been for 5 months and she is very agitated and mean with this stuff. really don't see improvement.

[NancyD]

...we have no idea y she gets these infections

 

Have you looked for MTHFR or COMT mutations? Tested for KPU? Checked D levels? Glutathione levels? Heavy metal testing?

[MamaOnAMission]

yes. all came out fine. i had dozens of tests done. i think all one doctor saw was high vitamin 6 levels.

[SSS]

How is her diet? Yeast, or clostrida possible?

What do you have her doing for detox?

[MamaOnAMission]

This is what they found after 12 years. We have tried all different things, and all made her worse. The only relief has been prozac thus far. She is non-functiong. Agitated and confused, severe OCD. Never sleep.

 

She has low IgE and IgG4

Abnormal EEG, but not seizures,

High B6

Cam Kinase 166

Restless leg syndrome.

Possitive for Bartonella/Lyme.

Cholesterol levels high.

Clostridia

Low Vitamin D

 

She is taking...lamictal, prozac, bactrim, minocycline, melatonin, teeny seroquel and culturelle.

[SSS]

Well, if you are looking for outside opinions, here is mine:

 

If she has an active clostrida (c. diff.) infection, this can absolutely cause aggression and mean behavior- and, can be very serious.

If it is present, Flagyl or Vancomycin will be needed to clear it,

and, with all the antibiotics she is on, along with known gut flora imbalances (clostrida)

and I don't think your culterelle is going to cut it.

I would go with a quality, high count, like custom probiotics, theralac, Klaire detox ther-biotic,

and also add Florastar (sacc. B.)

to try and keep the clostrida coming back.

 

For high cholesterol, AND, for binding the toxins out of her body, I would try cholestrymine powder (prescription)

Make sure bowels move 1-2 times a day.

 

My .02 cents--

[MamaOnAMission]

thanks.

heres the thing. panda guy puts her on vanco. for clostridia. she looks somewhat normal during the day but OCD FLARES BIGTIME AT NIGHT. he takes her off of it. we keep searching and find she is positive for lyme and bartonella. doctor treats with mino. and bactrim. not much improvement. perhaps sleep is i bit better. psychiatrists starts prozac to help with SEVERE OCD.

 

i suggest to the LLMD that she almost looked normalal while on the vancomycen. i asked can we add some in with the bactrim and minocycline. he NEVER answers my question. i keep asking it. he is top LLMD in country but i have a very hard time communicating with him. he ia also a bit hard of hearing. i need to change doctors but its overwhelming to start over right now. Pus i don't know if i go 2 another LLMD or a Dan doctor.

 

i am no doctor but am i completely nuts to suggest to this doctor that she be on vancomycen along with the bactrim and minocyclime???? perhaps he thinks the antibiotics that she is on will help with the clostridia.

 

when she was on vancomycen, she came out of her autistic looking world a bit, but i do remember it making her really wild though, but every thing i gave made her really wild until i got her on the bactrim and mino. she seems to tolerate more sups and meds. thanks 4 ur help.

[Fixit]

 

 

 

i am no doctor but am i completely nuts to suggest to this doctor that she be on vancomycen along with the bactrim and minocyclime???? perhaps he thinks the antibiotics that she is on will help with the clostridia.

 

 

 

i do not think you are nuts.. the dr and patient have to work as a team. the dr cannot prescibe unless you tell them conditions and what you have witnessed...and responses the you have witnessed.

if the dr's had listened to me 9 years ago pans research would be 9yrs farther along..

 

as far as clostridia..we are treating that too....you can help back fill with alot of probiotics...

imagine playing in sand...as you scoop it out,,,other stuff slips in..could be good or bad...even though you might be trying to fill it in with good stuff, ie probiotics..other stuff is going to fight to get in there too..yeast clostidia....that's why it's not just scoop it out once and replace with beneficial item...everything is competing for the same space continually...so you have to keep suppling new troops to the fight.

our dan wants me to get my ds4 up to 100billion probiotcs a day to fight c.diff for him...we are trying to fight it without vanco or flagyl..this child also has a yeast infection.

 

 

this child is small and just found out he has no amino acids..cdiff and yeast infection...and is pandas(but in remission for better than a year)...i feel if i had continued with vaccines he could have ended up on autistic spectrum.(does have tag issues and teachers kept hinting for a while{their hands are tide to what they can say}the he does not seem to be keeping up with the other kids in pre-k)

 

all of our docs discuss why and what meds for my kids..and if i bring up something they will tell me why not, or say thats a good idea...

i'm thinking he didn't hear you

Edited April 22, 2012 by Fixit

[tpotter]

thanks.

heres the thing. panda guy puts her on vanco. for clostridia. she looks somewhat normal during the day but OCD FLARES BIGTIME AT NIGHT. he takes her off of it. we keep searching and find she is positive for lyme and bartonella. doctor treats with mino. and bactrim. not much improvement. perhaps sleep is i bit better. psychiatrists starts prozac to help with SEVERE OCD.

 

i suggest to the LLMD that she almost looked normalal while on the vancomycen. i asked can we add some in with the bactrim and minocycline. he NEVER answers my question. i keep asking it. he is top LLMD in country but i have a very hard time communicating with him. he ia also a bit hard of hearing. i need to change doctors but its overwhelming to start over right now. Pus i don't know if i go 2 another LLMD or a Dan doctor.

 

i am no doctor but am i completely nuts to suggest to this doctor that she be on vancomycen along with the bactrim and minocyclime???? perhaps he thinks the antibiotics that she is on will help with the clostridia.

 

when she was on vancomycen, she came out of her autistic looking world a bit, but i do remember it making her really wild though, but every thing i gave made her really wild until i got her on the bactrim and mino. she seems to tolerate more sups and meds. thanks 4 ur help.

 

 

I totally get what you are saying. I also completely agree with S&S. Since your dd was on vanco for c-diff, does that mean that she's definitely positive for it? If so, can you get her regular doc to prescribe the vanco? Mine does. If you want a recommendation for LLMD, let me know (I don't know where you live, though.) What I really like about ours is that he does listen to everything I suggest. OCD probably flared on vanco, because she was herding, so it's not a bad thing. It's really important to get rid of the c-diff (mine DS19 has had it so many times that we had to stop all abx...we're now doing alternative for him.)