antibiotics improve symptoms...

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FatherOf2
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Re: antibiotics improve symptoms...

Postby FatherOf2 » Tue Jun 17, 2014 12:16 am

fiveyearswasted wrote:If you think about what a strep infection does (at least the stuff that we know about).....through molecular mimicry it copies the cell walls of of the cells around it and confuses the immune system initiating an auto-immune attack of the immune system against your own body. This is why simple strep infections turn into serious stuff like rheumatic fever: http://en.wikipedia.org/wiki/Rheumatic_fever
where the immune system is turned against the heart and or brain.
It is short sighted to not test ASO, D-Nase, and ANA levels to determine if there is / was a strep infection, and an ongoing autoimmune response. Visual ticks should be secondary or considered separately from testing. Positive tests are 100% conclusive of an infection.
FWIW, my son had elevated levels of the 3 tests mentioned.

Modern examples have shown us that there are plenty of kids with negative test results that quite clearly do have PANDAS. That is where the visual signs (ticks, movement & speech issues) can warrant the empirical use of antibiotics. Ticks do not mean that testing should be skipped, instead it means that testing is all the more important.

Our immunologist, who specializes in PANDAS, refused to order those blood tests. Here is his reply I got today: "The ASO and DnAse antibody tests would be helpful if this was acute not chronic. I find nothing to suggest an autoimmune component to his diease course and nothing to suggest PANDAS. I would not suggest further labs or any immune suppressant therapy."

oleander
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Re: antibiotics improve symptoms...

Postby oleander » Tue Jun 17, 2014 12:30 am

Go to a family doctor, that's what we did and are getting it done this week. You have to beg.

fiveyearswasted
Posts: 499
Joined: Wed Feb 29, 2012 8:08 pm

Re: antibiotics improve symptoms...

Postby fiveyearswasted » Tue Jun 17, 2014 3:41 am

FatherOf2 wrote:
fiveyearswasted wrote:If you think about what a strep infection does (at least the stuff that we know about).....through molecular mimicry it copies the cell walls of of the cells around it and confuses the immune system initiating an auto-immune attack of the immune system against your own body. This is why simple strep infections turn into serious stuff like rheumatic fever: http://en.wikipedia.org/wiki/Rheumatic_fever
where the immune system is turned against the heart and or brain.
It is short sighted to not test ASO, D-Nase, and ANA levels to determine if there is / was a strep infection, and an ongoing autoimmune response. Visual ticks should be secondary or considered separately from testing. Positive tests are 100% conclusive of an infection.
FWIW, my son had elevated levels of the 3 tests mentioned.

Modern examples have shown us that there are plenty of kids with negative test results that quite clearly do have PANDAS. That is where the visual signs (ticks, movement & speech issues) can warrant the empirical use of antibiotics. Ticks do not mean that testing should be skipped, instead it means that testing is all the more important.

Our immunologist, who specializes in PANDAS, refused to order those blood tests. Here is his reply I got today: "The ASO and DnAse antibody tests would be helpful if this was acute not chronic. I find nothing to suggest an autoimmune component to his diease course and nothing to suggest PANDAS. I would not suggest further labs or any immune suppressant therapy."


Well that sucks. The ASO and D-nase at least let you know *if* there was a previous strep infection. It is not 100% definitive for pandas but *if* they are elevated, then you know that at some time the immune system was triggered by a strep infection. Ironically, in this case elevated ASO and D-nase actually would suggest PANDAS. ANA levels are good to check too.


Here is my little theory. In the case of PANDAS in ASD. Many ASD kids have PANDAS and this has been well established. What is strange is that they don't seem to have had / caught the typical acute strep (throat) infections that are commonly the first step in cases that lead to rheumatic fever. What I think is going on is that this interaction of the immune system and strep bacteria is occurring not in the throat but in the intestines. Low levels of GSH allow for increased intestinal permeability which causes leaky gut syndrone. In this case there are many forms of strep bacteria, many of them healthy forms, some not, that are then able to interact with the immune system at that location. If you think about it, strep can cause the immune system to mistakenly attack other parts of your own body, and this may also be the pathway that causes other autoimmune occurrances such as Crohn's and Celiac disease. This may also explain why kids can have PANDAS without elevation in ASO and D-nase as the immune system may be acting against a strep form in the gut other than Strep-B.
No scientific evidence that autism has a toxic or allergic basis. - Mr. Barrett

JeniB
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Re: antibiotics improve symptoms...

Postby JeniB » Tue Jun 17, 2014 7:12 am

I totally agree, we've never had a positive throat strep test, even when I know my son was exposed to it. Due to their lack of stomach acid, this bacteria makes it's way to the intestines and causes infection there….and the immune reaction. You will hear that all the time here, sudden onset of OCD and our kids not having an actual strep throat culture come up positive. My nephew, who was slightly on the spectrum and recovered, just recently had a horrible outbreak of psoriasis on his entire body. The dermatologist was the one who discovered the strep and thought of it (said it was a long untreated strep infection causing the psoriasis). The regular pediatrician thought it was maybe chickenpox. The dermatologist didn't even test, put him on a month of antibiotics. He knew it was strep causing the psoriasis. They treated him because my brother wasn't going in trying to blame odd behavior on strep, the horrible rash on his entire body is why the doctors treated it. We are sol because we try to help the autistic behavior due to strep. Dumb doctors.
Jen
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fiveyearswasted
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Re: antibiotics improve symptoms...

Postby fiveyearswasted » Tue Jun 17, 2014 6:56 pm

^^ JeniB. Interesting that you mention that. I've spoke with a couple of doctors that say / believe that ALL strep infection are acute and that it is impossible to have a chronic strep infection.

Crazy that they are so adamantly against doing the safe thing which is a round or two of abx. Heck, if my kids get a cold or fever, with no testing whatsoever, they go straight for the abx though.
No scientific evidence that autism has a toxic or allergic basis. - Mr. Barrett

guiandres
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Joined: Sun May 11, 2014 1:29 am

Re: antibiotics improve symptoms...

Postby guiandres » Wed Jun 18, 2014 5:16 pm

Balance the gut where most of the immune system resides. Correct fungal candida issues. Curcumin/turmeric, fish oil, astaxanthin, etc.

sarahsu9
Posts: 169
Joined: Fri Jul 23, 2010 4:44 pm

Re: antibiotics improve symptoms...

Postby sarahsu9 » Wed Jun 18, 2014 5:57 pm

Negative strep titers does not mean your child does not have PANDAS.

There is an interesting test for PANDAS/ PANS

http://www.moleculera.com

Living with and researching PANDAS (now called PANS) now for 4 years,
it is still fascinating to me how many of the children
are testing positive for Lyme disease, Bartonella, and Mycoplasma pneumonia.

It is a long, hard road (just like autism is) and requires money and specialists.
Although, thank God the word is finally getting out and is now recognized and heard of at least
in most pediatric offices.
But to get them over the 'strep only' mentality, well, that's a different story.
Although the OCD foundation does mention Lyme disease and Myco P in addition to strep:
http://www.ocfoundation.org/uploadedfil ... 0sheet.pdf

oleander
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Re: antibiotics improve symptoms...

Postby oleander » Mon Jul 14, 2014 10:23 pm

Can someone list me natural antibiotics that have worked? Doses etc. Thanks!

FatherOf2
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Re: antibiotics improve symptoms...

Postby FatherOf2 » Fri Aug 01, 2014 12:12 am

My son finally got tested for PANDAS. The resuts suggest no PANDAS, but I would appreciate if more knowledgeable people could confirm it:

Anti-DNase <78 ref: 0-77 u/mL
ANA - negative
Antistreptolysin 4.9 ref: 0-200 IU/mL

He continues to have high eosinophils:

Eos 11 ref: 0-5%
Eos (abs) 0.8 ref: 0-0.3 x10^3/uL

We are seeing allergist next week. Iron is normal now, but Calcium is below the reference range. Amazingly, despite all-meat diet, his proteins are below the reference range. Globulin is also below the range, and A/G ratio is higher than normal (3.2 vs 1.1-2.5). TSH, vit D are normal.

makingitpossible
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Re: antibiotics improve symptoms...

Postby makingitpossible » Fri Aug 01, 2014 6:58 am

Fatherof2
Can you please explain if insurance paid for the PANDAS test and/or the test to determine the amino acids/proteins and what these tests are.

JeniB
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Re: antibiotics improve symptoms...

Postby JeniB » Fri Aug 01, 2014 8:14 am

we did have mycoplasma on our stool DNA test.
Jen
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FatherOf2
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Re: antibiotics improve symptoms...

Postby FatherOf2 » Fri Aug 01, 2014 9:11 am

makingitpossible wrote:Fatherof2
Can you please explain if insurance paid for the PANDAS test and/or the test to determine the amino acids/proteins and what these tests are.

Yes, insurance paid. The test order was given by our DAN doctor. We went to LabCorp. The tests were:
- CBC diff
- complete metabolic panel
- carnitine total & free
- TSH
- vit D
- Mg
- Ferritin
- Lactic acid
- Ammonia
- Anti-DNase
- antinuclear antibodies direct
- Antistreptolysin

We are high in Ammonia too. What can we do to reduce that?

FatherOf2
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Re: antibiotics improve symptoms...

Postby FatherOf2 » Fri Aug 01, 2014 9:13 am

JeniB wrote:we did have mycoplasma on our stool DNA test.

What's that?

Josie
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Re: antibiotics improve symptoms...

Postby Josie » Fri Aug 01, 2014 4:14 pm

Can someone list me natural antibiotics that have worked? Doses etc. Thanks!

Here is a link to a book that might help you find natural antibiotics.
http://www.amazon.ca/gp/product/1603429 ... rd_i=typ01

makingitpossible
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Re: antibiotics improve symptoms...

Postby makingitpossible » Fri Aug 01, 2014 8:42 pm

FatherOf2 wrote:
makingitpossible wrote:Fatherof2
Can you please explain if insurance paid for the PANDAS test and/or the test to determine the amino acids/proteins and what these tests are.

Yes, insurance paid. The test order was given by our DAN doctor. We went to LabCorp. The tests were:
- CBC diff
- complete metabolic panel
- carnitine total & free
- TSH
- vit D
- Mg
- Ferritin
- Lactic acid
- Ammonia
- Anti-DNase
- antinuclear antibodies direct
- Antistreptolysin

We are high in Ammonia too. What can we do to reduce that?


Thank you!

In regards to ammonia one theory is the liver isn't processing it so anything to strengthen the liver like milk thistle might help a little. Less meat and more branched chain amino acids is effective in liver failure patients.
I think Yasko recommends Yucca herb with meat consumption and then charcoal flushes with magnesium citrate to lower ammonia.

sarahsu9
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Re: antibiotics improve symptoms...

Postby sarahsu9 » Sun Aug 03, 2014 11:33 pm

Lyme disease and their co-infections, Bartonella, Babesia, Myco P.
are being found in nearly 50%+ of PANDAS/ PANS children.
(I actually think it's higher than 50%)
And, congenital transmission coming from the Mother.
Oh, I know it may sound crazy, believe me,
I thought it was absurd,
until we couldn't get remission and after hearing all the PANDAS/ PANS
Moms say: Lyme, check for Lyme,
and we finally tested 3 years ago:
Positive. Positive Lyme, positive Bartonella Henslae. And we've never owned a pet, not in endemic area.
No memory of a tick bite, no memory of a rash.

Igenex lab offers a Western Blot test for $200.
Get a copy of the results, and look for positive Lyme bands
or IND (which means detected.)

majadj
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Re: antibiotics improve symptoms...

Postby majadj » Thu Aug 07, 2014 4:47 pm

FatherOf2, have you tested the stool for parasites (Eo high, Ca low...)?

FatherOf2
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Re: antibiotics improve symptoms...

Postby FatherOf2 » Thu Aug 07, 2014 11:34 pm

majadj wrote:FatherOf2, have you tested the stool for parasites (Eo high, Ca low...)?

Interesting. I knew that high Eos can be caused by parasites, but I didn't know that low Calcium can too. I thought that low Ca is due to chelation and restricted milk diet.

We had stool tested for parasites 1.5 years ago, negative. Eos were high then too. We saw an allergist yesterday. She said that most parasites typically cause diarhea and other upset stomach symptoms except for a few ones that can't be detected. She ordered some weird blood test to see if my son has those "undetectable" parasites. Wating for the reults. My son also has a genetic mutation that leads to eosinophilia and another one that leads to leukemia, which is also manifested by high eos (sometimes ignorance is a blessing :)). The sad thing about high eos is that they deposit in different tissues including brain causing inflammation. So, we have to figure out what causes high eos and treat it (but how?)

majadj
Posts: 46
Joined: Wed Jun 11, 2014 4:09 pm

Re: antibiotics improve symptoms...

Postby majadj » Fri Aug 08, 2014 3:56 am

I knew that high Eos can be caused by parasites, but I didn't know that low Calcium can too

Sorry, it is not something crucial - just thinking - hypocalcaemia and hypoproteinaemia are signs of maldigestion (poor digestion in the presence of parasites). Anyway, a blood test is the best thing to do. Did you tell the doctor about the medications and supplements you use? Some drugs could be the cause of high Eos (don't know the details). Good luck

donnaiarra
Posts: 7
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Re: antibiotics improve symptoms...

Postby donnaiarra » Sat Aug 09, 2014 6:04 pm

I have a child who is on the spectrum and after 10 years has and initiates conversational language.... FINALLY and he will be 13. I started using essential oils and organic supplements from doTERRA and he has made huge gains. Please believe me this isn't a sales pitch I am simply sharing my story. IF you would like more information please contact me. When he gets sick I formulate my own ZPACK with essential oils. Because he has language and is now verbal he tells me right away....Over use or abuse of antibiotics is so common among our children. They always seem to get sick. I will post an immune booster recipe. Please contact me if you are interested in more information. 908-251-1404 doterraoilwonders@gmail.com

I would love to share with you what I know and what has helped my child in addition to therapies and diets and of course all our supplements.

Z-Pack" RECIPE USING ESSENTIAL OILS

"Z-Pack" RECIPE: Many of you are probably familiar with the "Z-Pack", Azithromycin antibiotic used pretty frequently for a number of different infections. I personally have been issued these antibiotics a number of times in my life. I have an alternative using doTERRA Certified Pure Therapeutic Grade essential oils! How exciting! I have been told many times by healthcare providers while being prescribed these antibiotics, "If it's a bacterial infection, these antibiotics will help. But if it is something viral, they will not help and you will have to just ride it out." Something AWESOME that essential oils have on antibiotics? Antibiotics cannot penetrate cell membranes... essential oils CAN penetrate cells to kill viruses AND bacteria! Boo-ya!
Here is this "Z-Pack RECIPE":

Z-Pack" RECIPE USING ESSENTIAL OILS

"Z-Pack" RECIPE: Many of you are probably familiar with the "Z-Pack", Azithromycin antibiotic used pretty frequently for a number of different infections. I personally have been issued these antibiotics a number of times in my life. I have an alternative using doTERRA Certified Pure Therapeutic Grade essential oils! How exciting! I have been told many times by healthcare providers while being prescribed these antibiotics, "If it's a bacterial infection, these antibiotics will help. But if it is something viral, they will not help and you will have to just ride it out." Something AWESOME that essential oils have on antibiotics? Antibiotics cannot penetrate cell membranes... essential oils CAN penetrate cells to kill viruses AND bacteria! Boo-ya!
Here is this "Z-Pack RECIPE":
* You will use Recipe #1 for two days, switch to Recipe #2 for two days, switch to Recipe #3 for two days.
* You will add the drops of essential oils to empty veggie capsules, and the drops will fill two capsules. Take the two capsules once a day.
Recipe #1:
12 drops OnGuard blend
6 drops Oregano
2 drops Frankincense

Recipe #2:
10 drops Melaleuca
10 drops Lemongrass
5 drops Thyme
5 drops Cinnamon

Recipe 3:
10 drops Cinnamon
10 drops Oregano
10 drops Lemon
2 drops Frankincense


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