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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBookOur helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 


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CCSVI Angioplasty Tomorrow


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18 replies to this topic

#1 michaeltampa

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Posted 06 September 2011 - 06:35 AM

I have venous angioplasty scheduled for tomorrow morning, to clear blocked jugulars. This is a relatively new discovery that most with lyme with neurological symptoms have blocked veins contributing to the symptoms. It was originally discovered by Dr. Zamboni from Italy, applying to MS patients, and Dr. Klinghardt has found the situation applicable to neurological lyme patients as well. I have tested positive for the blockage and tomorrow we are hoping to unblock them. We'll see! Excited but nervous. Anyone wanting to send prayers or healing energy my way would be appreciated, thank you!


#2 llm

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Posted 06 September 2011 - 06:41 AM

Serious positive thoughts (and my own version of prayers) being sent your way. I know how nervous and excited you must be. I hope this is a major step forward in your healing. How long is the expected convalescence?

#3 philamom

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Posted 06 September 2011 - 07:02 AM

Best of luck Michael!! Sending prayers for a speedy recovery & success!!!

Dd 13
Chronic Sinusitis since 18mths of age. Symptoms emerged with sinus infections and into remission with abx.
Severe Episode in March 2006. Dx with PANDAS May 2006. Three other episodes between 2007-2009.
2009- symptoms became chronic.
2010- dx with lyme, bartonella, rmsf. Positive Igenex Lyme. Positive Quest Bartonella and RMSF (igg).
2011- lupus flair, erythema nodosum, Pots, Positive Advanced Lab Culture w/ pic of spirochetes in sample. Positive Igenex

2012- endoscopy & colonoscopy

2013- Still positive for Lyme w/Igenex.. Positive Bartonella w/Quest

2014- Positive Advanced Lab borrelia culture, Positive Igenex, lupus flair, hypothyroidism

 

Treatment: abx & ivig


#4 christianmom

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Posted 06 September 2011 - 07:04 AM

My prayers are with you. You have been through so much and are a great encouragement to you.
DS18
10/2010 ----- Treated for PANDAS (strep) w/ many abx -- improved to 30% by 12/2011 and remained there until 12/2012
1/2012 ----- Treated for lyme, bartonella, babesia, parasites (hookworm), yeast, H. Pylori, KPU, one MTHFR C677T mutation, and undermethylation -- improved to 80% by 12/2012 using Klinghardt lyme/parasite/KPU protocols and "lyme cocktail"
1/2013 ----- Very quickly regressed to almost non-functional again; doctor felt lyme had broken through natural antibiotics
7/2013 ----- Son on bactrim, azith, plaquenil, nystatin; will soon be adding Mepron; treating for babesia; son at 65%

#5 sf_mom

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Posted 06 September 2011 - 07:23 AM

Good luck, wishing you a speedy recovery and prayers. I will be very curious to know if the procedure is helpful.

-Wendy

#6 sss

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Posted 06 September 2011 - 07:46 AM

Sending you very good thoughts and PV's--------
Daughter 9, PANS, probable congenital Lyme,
started biomedical treatments w/DAN! and GF/CF at age 4
Cam K 175, 2 HD IVIG's, 2 LLMD's- had improved, but still challenging in areas at times.
Mom-tested positive Igenex PCR Lyme, and positive Bartonella, 2011.
After long tx break for dd9, where we backslid, in Spring '14 decided to resume tx for Lyme and co-infections,
with LLMD, and finally saw a PANDAS specialist (amazing experience and person)
and as a result, have a wonderful new baseline! (everything crossed!)

#7 michaeltampa

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Posted 06 September 2011 - 08:12 AM

Serious positive thoughts (and my own version of prayers) being sent your way. I know how nervous and excited you must be. I hope this is a major step forward in your healing. How long is the expected convalescence?


For most people it is outpatient, it sounds like if there are some unexpected issues a stay in the hospital might be required. In most cases, it is a couple/few days off work and then back to normal routine (or hopefully a better routine). I am expecting to return to work on Monday.

Thank you everybody! I'll give a report as soon as I'm able.

#8 sptcmom

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Posted 06 September 2011 - 11:35 AM


Serious positive thoughts (and my own version of prayers) being sent your way. I know how nervous and excited you must be. I hope this is a major step forward in your healing. How long is the expected convalescence?


For most people it is outpatient, it sounds like if there are some unexpected issues a stay in the hospital might be required. In most cases, it is a couple/few days off work and then back to normal routine (or hopefully a better routine). I am expecting to return to work on Monday.

Thank you everybody! I'll give a report as soon as I'm able.

GOODLUCK Michael!yes, do keep us posted. The current president of the American Academy of Cranio-Facial Pain is a local guy and a friend. He performs this procedure. He trained in Italy and is friends with Klinghardt too. He has seen great results with this procedure when combined with neural therapy for people with unexplained and "uncurable" cranio facial pain syndromes.
Thinking of you, saying a prayer and sending positive thoughts your way.

#9 mama2alex

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Posted 06 September 2011 - 12:19 PM

Good luck Michael! I'll be thinking good thoughts and saying prayers for an easy procedure, quick recovery and positive results!!

#10 nancyd

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Posted 06 September 2011 - 12:59 PM

My thoughts are with you, Michael! Good luck and let us know how it goes.

#11 juliafaith

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Posted 06 September 2011 - 01:38 PM

Best wishes on your procedure. Will be great to hear how you are doing afterwards.

Just broke down and cried today after my son left for school on his bike. Has been a 1 1/2 yrs. of illness and no public school, so I hope you get to experience the same feelings of joy after your surgery!

Take care and best wishes on healing.

Julia

Ds16: 5/10-PANS; 10/10 -lyme; Babesia [parasite]; Mico. & chlamydia pneu.; mold; T&A done; GcMAF done 12/13;  1st Strep Pos. 2/14.
Current treatment-    Maintenance:  Vit. D; Detox [Chia seeds];  probiotic;  Kidney detox drink-electrolytes/'M' Water/Galactose   PANS Support: (Myco Potent Immune Complex; Biocidin (anti-bacterial); Kidney tincture.
Prescriptions/Treatments:  thyroid; Desmopressin [Urinary tract support]; neurofeedback (weekly) Psychologist (bi-weekly);  hydroxyzine (antihistamine-sleep during flair); Exercise (finally!)<p> 


#12 michaeltampa

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Posted 06 September 2011 - 02:39 PM

Wow, that's a great milestone!

#13 momcap

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Posted 06 September 2011 - 03:25 PM

Will be praying for you tomorrow a.m.! Can't wait to hear if it helps.
DS9 - Lyme & PANDAS (IgM & IgG positive on lyme Western Blot, chronic elevated ASO in 300-500s with baseline ASO of 27 before scarlet fever, CamK II @ 176, and anti-dopamine 1 @ 4000)
DS7 - Lyme (IgG positive) & "strep carrier"
DS6 - lyme (IgG positive) & chronic elevated ASO in 500-700s

#14 suzan

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Posted 06 September 2011 - 03:28 PM

Good luck and I wish you the very best! Looking forward to your update.

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

 


#15 susie

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Posted 06 September 2011 - 09:36 PM

I have venous angioplasty scheduled for tomorrow morning, to clear blocked jugulars. This is a relatively new discovery that most with lyme with neurological symptoms have blocked veins contributing to the symptoms. It was originally discovered by Dr. Zamboni from Italy, applying to MS patients, and Dr. Klinghardt has found the situation applicable to neurological lyme patients as well. I have tested positive for the blockage and tomorrow we are hoping to unblock them. We'll see! Excited but nervous. Anyone wanting to send prayers or healing energy my way would be appreciated, thank you!

Good luck Micheal. I'll be praying for you.




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