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Treatment Update


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5 replies to this topic

#1 juliafaith

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Posted 02 March 2012 - 07:49 PM

After 16 months of treatment and over 2 years of illness, I believe my son's immune system was compromised and this allowed all kinds of bacteria, viruses, lyme etc. to invade his body and re-activate things that were already there. With that said, I am not sure what started it all but I suspect it was 'mold' in my home that was removed (but maybe not properly) and genetic factors (i.e., methylation issues etc.). I believe lyme was only one of the many factors that eventually made him very ill where he could not recover on his own (or with any strictly allopathic [Western] dr.).

Also, a Dr. suggested in his writing that a certain HLA halotype was also only going to 'get better' on something other than abx. Found this out after the fact but it makes sense since my son never responded to abx.

Now after 16 months of treatment (allopathic, naturalpathic, & homeopathic), I can see some great improvement. His 'tic' in throat is gone. His 'herxing' is minimal (just missed his monthly 'herx' for the first time since starting all of this). His lungs are functioning better than ever but we are still working on myco per last dr. visit. Anxiety is getting less and less and energy is skyrocketing :wacko: . Thyroid tests are improving with every test. His terrible 'stomach pain' is much less or sometimes, non-existent. His flu-like symptoms are slowly going away.

At his visit yesterday, fungal was testing positive and I realized after we left we had forgot to mention his yeast returning. Dr. put him on anti-fungal without our mention of this - wow! quite surprising and thought it was related to viral die-off. Thyroid #'s are down but she wants them at < or = to '1' even tho Labcorp. indicates they are in the 'normal range.' With muscle testing, myco p. still is testing as something that needs treatment so continuing.

Also, Valcyte, was testing 'strongly' so continuing with that and heavy detox with chlorella/salmon oil and now detox suppositories (not supposed to mention this per 14 yr. old <_< ). Interestingly enough, the K-MAF that I ordered from EURO was testing just 'o.k.' so reduced that to once per day. This was the alternative to nagalase injections for the viruses. Dr. figured it was the Valcyte doing its' job.

Son is continuing with minerals, vit. A & K2, as well as, 'cocktail of viressence/quintessence/lipo-health', desmospressin, and supernatant (probiotic). I am not sure about his reaction to others who are ill. Recently, his dad left town and he immediately came out of a 'flare-up', but he has also been on Valcyle for a week. So not sure what the triggers may have been (it was after a 2-week cold virus too which he came out of like everyone else in family).

For the first time since treatment started, his dr. visit is in 6 weeks instead of 4!

Finally (sorry so long), dh is going to the same dr. and we are finding some high 'mold' type numbers, so working on his health as well. Dr. said he tested for 'lyme' (muscle tested) but it does not seem to be a major problem in all of his health issues. So will see where all of this goes. Just not sure if we can pay for all the supplements so that will be a challenge :o . ERMI test for mold will be taken next month so will see what that says.

Keep on healing!

Edited by JuliaFaith, 02 March 2012 - 07:52 PM.

Ds16: 5/10-PANS (flairs with pneumonias); 10/10 -lyme; Babesia [parasite]; Mico. & chlamydia pneumonieae; mold; T&A done; GcMAF done 12/13;  First Strep Positive 2/14 (not much flair).

Current treatment-    

Maintenance:  Vit. D3/Fish Oil; Detox [Chia seeds];  probiotic;  Kidney detox drink-electrolytes/'M' Water/Galactose   PANS Support (mood/brain/anti-bacterial:  Kavinace;   B12 Spray; Calming Cream; Methyl-Guard Plus; SpiroNil-Biocidin (anti-bacterial);   Immune Support-Winter:  Chaga mushroom; Vit. A pushes once a month to keep viruses away.

Prescriptions:  thyroid; Desmopressin [Urinary tract support]; neurofeedback (weekly);  Psychologist (bi-weekly);  hydroxyzine (antihistamine-sleep during flair); Exercise (finally!)

 

 Manuka honey [+35]/distilled water for nasal spray/ear drops and in tea for throat)--Wow!--LOVE THIS HONEY for ears, nose (we keep to once/week or less), & throat!



#2 sss

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Posted 03 March 2012 - 06:41 AM

Thanks for the detailed update, enjoyed reading it and learning from your journey--
and wonderful to hear the progress :-)
Daughter 9, PANS, Aspergers traits, probable congenital Lyme,
biomedical treatments w/DAN! Cam K 175, 2 HD IVIG's, 2 LLMD's- improved, but still challenging in areas at times.
Mom-tested positive Igenex PCR Lyme, and positive Bartonella 2011.
Went through extensive Lyme/Bart treatment, lasting improvements.
Both off treatments > a year,
but require special diets
and a pharmaceutical script or 2.

#3 sf_mom

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Posted 03 March 2012 - 06:52 AM

What a wonderful update. Congratulations on behalf of your son!!!

I can relate to having issues with DH. DH also ARTs, Zyto Machine and has some positive blood work for various infections. His health issues are there but minor in comparison to the rest of the family. However, when he gets sick he seems to have a tougher time getting over "whatever", has had a chronic cough at night for well over a year and a few other minor symptoms. He has very few biofilms and are treating him mostly with herbals. Some antibiotics for parasites. I truly feel his issues would have developed and presented as something much different maybe 10 to 20 years from now. We are glad that we choose to address his issues. He is responding to treatment. My biggest fear was he was harboring stuff and continually giving it back to the kids. So we too are making headway with the entire family as a result of our children's diagnoses.

Good luck in bringing the rest of your family to wellness over the next year or two.

Edited by SF Mom, 03 March 2012 - 07:57 AM.


#4 juliafaith

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Posted 03 March 2012 - 04:01 PM

Forgot to mention that ds is getting the same blood tests done that his dad had done last week. Apparently, certain viruses (probably bacterial too) can run in families. It seems they both have had the HHV 6 virus show up as "High".

Ds16: 5/10-PANS (flairs with pneumonias); 10/10 -lyme; Babesia [parasite]; Mico. & chlamydia pneumonieae; mold; T&A done; GcMAF done 12/13;  First Strep Positive 2/14 (not much flair).

Current treatment-    

Maintenance:  Vit. D3/Fish Oil; Detox [Chia seeds];  probiotic;  Kidney detox drink-electrolytes/'M' Water/Galactose   PANS Support (mood/brain/anti-bacterial:  Kavinace;   B12 Spray; Calming Cream; Methyl-Guard Plus; SpiroNil-Biocidin (anti-bacterial);   Immune Support-Winter:  Chaga mushroom; Vit. A pushes once a month to keep viruses away.

Prescriptions:  thyroid; Desmopressin [Urinary tract support]; neurofeedback (weekly);  Psychologist (bi-weekly);  hydroxyzine (antihistamine-sleep during flair); Exercise (finally!)

 

 Manuka honey [+35]/distilled water for nasal spray/ear drops and in tea for throat)--Wow!--LOVE THIS HONEY for ears, nose (we keep to once/week or less), & throat!


#5 suzan

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Posted 04 March 2012 - 05:43 PM

Great update! I am so glad you have a doctor who is helping so much. Keep up the good work and I will look forward to the next greater update!

susan

Me - diagnosed with hashimoto thyroiditis in 1996, lyme and parsonage turner syndrome in 2010, mthfr mutation in 2013

dd10 and dd11 - diagnosed with sensory processing disorder in 2006, gluten intolerance in 2007, pandas in 2008, lyme in 2010, mthfr mutation in 2013

 


#6 sptcmom

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Posted 05 March 2012 - 01:55 PM

Also, a Dr. suggested in his writing that a certain HLA halotype was also only going to 'get better' on something other than abx. Found this out after the fact but it makes sense since my son never responded to abx.



Can you give me more info on this HLA haplotype? Any link to the doc or the article?
Thanks




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