Posted 27 January 2012 - 07:23 PM
DS, was sick off and on 12 times for the first 24 months of his life, sinus and ear infections and then diarrhea from abx. He developed normally and hit all milestones. At age 4, something changed and he was not the same. He was clingy, would pick his fingernails and toenails, would not go to sleep by himself. Argumentative with his sister. Diagnosed with Asperger's at age 6. His IQ is very high, but his processing is slower. We tried social skills therapy, behavior modification therapy, medication for ADHD, depression, and anti-psychotics (those were the worst, we quit that ASAP) with little to no benefit.
At age 10, I stumble on the book Saving Sammy. While our symptoms were not the same, there were enough similarities for me to pursue treatment with Dr. K. Within one week of his first IVIg we had remission. He has had four IVIg to date, and been treated with IV abx for Lyme/Bartonella. He has very few strep antibodies, despite being vaccinated and receiving IVIg.
He is still having flares after infections at age 17. We are currently working with a physician at University of Missouri.
Posted 27 January 2012 - 07:24 PM
I know I posted this privately to you but I've had a ton of PM's asking how Dr. T found our h-pylori when a scope DID NOT!
What's the most reliable way to test for H.Pylori?
Originally our Lyme doc (we don't have lyme but thought we might) checked for h-pylori antibodies (IgG, IgM, IgA..) and found one positive. I then went to get him a scope. The "doctor" (idiot) barely looked, said no h-pylori, milld redness, no explanation. So Dr. T looked at all our labs and rechecked h-pylori IgG, IgA, IgM and it was still positive. He wanted to give us antibiotics but my son's stomach has been a train wreck for years so I asked our DAN. His natural treatment is as follows.
bismuth gel 1 tsp (I can't find this)
grapefruit seed extract (1 capsule 2 x a day_)
mastic gum (2 tablets a day)
broccolli sprouts (this is a supplement)
tons of pro-biotics throughout the day
Also I fill my own empty capsules of baking soda, (one or two per meal to raise Ph. Kids with gut germs, have them because they are too acidic. Baking soda makes you alkaline, germs can't survive)
Also musenex, to thin the mucus protecting the h-pylori.
That's it! If you prefer antibiotics I know one is Azith, I also know another mom who's son's PANDAS REALLY improved after Tagamet! If the gut is not good, it greatly effects the immune system.
Good luck! Let me know if you have other questions.
Posted 27 January 2012 - 07:43 PM
edit- wait, I think I got that backwards.
Edited by philamom, 27 January 2012 - 07:45 PM.
Posted 27 January 2012 - 07:57 PM
"What is Helicobacter pylori?
Helicobacter pylori, or H. pylori, is a spiral-shaped bacterium that grows in the mucus layer that coats the inside of the human stomach.
To survive in the harsh, acidic environment of the stomach, H. pylori secretes an enzyme called urease, which converts the chemical urea to ammonia. The production of ammonia around H. pylori neutralizes the acidity of the stomach, making it more hospitable for the bacterium. In addition, the helical shape of H. pylori allows it to burrow into the mucus layer, which is less acidic than the inside space, or lumen, of the stomach. H. pylori can also attach to the cells that line the inner surface of the stomach.
Although immune cells that normally recognize and attack invading bacteria accumulate near sites of H. pylori infection, they are unable to reach the stomach lining. In addition, H. pylori has developed ways of interfering with local immune responses, making them ineffective in eliminating the bacteria (1, 2)."
It also has multiple flagella.
DD15 - Born 2001 with light/sound/touch sensitivity. Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination.
2004 - Dx ADHD, SPD (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia.
2008 - MMR booster and insect bite (bruise-like rash) - motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections.
2010 - Dx ADHD, Tourettes, Aspergers, motor delay, probable PANDAS.
Jan 2011 - shin/forearm pain, cyclic IBS, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremeties, chills and hot flashes, extreme fatigue, nightly fever.
June 2011 - Igenex PCR positive bartonella, Negative ELISA, Negative lyme (IND IgM kDa 41; IND IgG kDa 39, 34. kDa 41++). CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, methyl B12, methylfolate, P-5-P, herbal, homeopathic treatment with LLMD.
Jan 2013 - Bartonella IgG titers declined from 160 (Jun 2011) to 80. CD57 16.
April 2013 - Weaned from abx treatment at 80% improvement. Continued with Full Buhner bartonella herbal protocol, Terry Wahls/PerfectHealthDiet gf/cf/sf diet. Minimizing EMF exposure.
Sept 2013 - CD57 45.
Oct 2013 - All symptoms (PANS and pain/fatigue) 95% resolved. No flares with viral or other infections. Herxing remains with changes in herbal protocols.
Nov 2013 - Clinical babesia diagnosis. Improvement to 98% with addition of Buhner herbal protozoan treatment.
Dec 2013 - ANA titers negative. PANS symptoms resolved. Regular classroom requiring no accommodations. B+/A student.
Mar 2014 - Continued improvement in cognitive/executive function with increased dosages of cryptolepis/sida/alchornea (CSA) tincture.
Sept 2014 - Continued improvement with the addition of red root. Resolution of EMF sensitivities with low dose cilantro tincture and diatomaceous earth. 99%
Sept 2015 - Present - complete resolution of lingering ticcing symptoms with removal of PUFA supplementation (CLO, hemp oil, fish oil etc). 100%
DS20 - Born 1996. No unusual symptoms.
Posted 27 January 2012 - 09:25 PM
DS5 dx'd 2009 1 year after first symptoms also PITANDS
Posted 28 January 2012 - 07:21 PM
Bismuth is the main ingredient in Pepto Bismol. That's what Inernist I used to work for recommended for positive H.Pylori along with the usual 2 antibiotic cocktail. Just FYI- Bismuth causes stools to turn ark green to black. They are not bleeding- it's color change from the bismuth.
Posted 28 January 2012 - 07:25 PM
One of Ds's docs ran a blood test through Quest. It popped right up with a positive response.
Simple blood test- most any lab can do it. Get positive or negative result. We used to do rapid tests in the Internist office. Had a kit just like a pregnancy test.Drew a tube of blood, spun off the serum and placed in rapid test kit. Get positive or negative within no time.
Posted 28 January 2012 - 07:40 PM
I did a stool test for h.pylori back on Dec 1st that was negative. The GI wants to do an endoscopy and colonopscy. I can't see how she would be able to handle the prep for the colonopscy. I'm suprised a blood test wasn't ordered to at least rule this out first??
I'm arranging a home blood draw for the end of next week - I'll have them add it on to her other labs.
also- my dd is having some black/tar colored stools (not always)- and smelly when it happens. So, I just read it can happen when taking iron supplements, which we just added in every other day. But I remember these dark stools taking place prior as well.
Edited by philamom, 28 January 2012 - 07:49 PM.
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