This is topic Fry or Clongen, etc. in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/99724

Posted by hoot (Member # 19281) on :
 
My hubby just saw LLMD for the first time on Friday even though he had IgeneX testing back in June (IgG and IgM interp pos by IgeneX, neg by CDC standards). At that same time he was diagnosed diabetic so we had to address his blood glucose issues first before addressing the lyme. He started A-BART (anyone using this???) on Friday due to some bart symptoms he is having (ball of foot pain). No bart testing has been done...but I guess this is OK for now.

So...this brings me back to thinking about my unvaccinated son that regressed into autism at the typical age. He did have a positive Fry smear a few years back and now I am wondering if we should try to address this again. At that time his Igenex testing was negative by Igenex and CDC standards, although he did have a few lyme specific bands (don't have the testing in front of me now as I am out of town). Got him on the Zhang protocol but never saw any die-off. Did seem to see some increased energy that seemed to last even though we stopped the protocol after 6 months. Tried cryptolepsis for a while. Can't remember why I stopped will have to check my notebook when I get home.
 
Posted by Keebler (Member # 12673) on :
 
-
Breaking up for easier reading, so more can answer:
------------------------

My hubby just saw LLMD for the first time on Friday even though he had IgeneX testing back in June (IgG and IgM interp pos by IgeneX, neg by CDC standards).

At that same time he was diagnosed diabetic so we had to address his blood glucose issues first before addressing the lyme.

He started A-BART (anyone using this???) on Friday due to some bart symptoms he is having (ball of foot pain). No bart testing has been done...but I guess this is OK for now.

* [Son] So...this brings me back to thinking about my unvaccinated son that regressed into autism at the typical age.

* He did have a positive Fry smear a few years back and now I am wondering if we should try to address this again.

At that time his Igenex testing was negative by Igenex and CDC standards, although he did have a few lyme specific bands (don't have the testing in front of me now as I am out of town).

Got him on the Zhang protocol but never saw any die-off. Did seem to see some increased energy that seemed to last even though we stopped the protocol after 6 months.

Tried cryptolepsis for a while. Can't remember why I stopped will have to check my notebook when I get home.

(hoot - in Illinois)
-
 
Posted by hadlyme (Member # 6364) on :
 
Dr. F is and has done a lot of work with lyme induced autism. I sat through his talk for the Autism symp. here in AZ.

If it were my child, I would maybe listen to what he has to say about the connection.
 
Posted by Keebler (Member # 12673) on :
 
-
I can't suggest much for your husband but it's important to know that lyme can CAUSE diabetes, so it's good that the infection is being addressed by a LLMD.

For your son, allicin or the Zhang protocol need not induce herx. Actually, the way the protocol is designed, the AI#1 and the Circulation P capsules are helpful to prevent a herx.

If he was feeling better on it, that's what matters. That's a bit of proof right there.

About testing, I see no need to retest for lyme. Once there, it's not going away totally, probably ever. It can go into remission and some are nearly cured, but if it flares, then if they address it right away, it's can go back into remission.

Symptoms tell us a lot after that initial test. Some doctors may do repeat tests but if you are wondering if lyme could still be a factor, sorry - yes, indeed, it can.

if he had one positive lyme smear with Fry, I don't think he ever needs another lyme test. Having a few positive bands on the WB is also of note. See the Dr. C note in below.

A good LLMD can help sort this out. I really don't think new lyme tests are necessary as you've already gotten proof that your son has a positive smear with Fry. No more proof is needed.

A LLMD may want to test for other tick-borne infections as well as other chronic stealth infections.

Since he was taking cryptolepis, I assume Babesia is a consideration.

Has he been tested for Heavy Metals? And intracellular magnesium? Metals are usually high and magnesium often dangerously low for lyme patients.

Also KPU / HPU may be of interest. That is addressed in this thread:
----------
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?

PORPHYRIA Thread - along with details about KPU/HPU (Mauve factor)
-
 
Posted by Keebler (Member # 12673) on :
 
-
The CDC criteria for a positive lyme test is criminally negligent. Aside from that, the manner in which tests are done leaves a lot to be desired.

www.canlyme.com/seronegreasons.html

(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

===============

This discusses how even ONE WB band can indicate lyme:

Dr C's Western Blot explanation is discussed here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077

================

Still, going back to the positive smear with Fry Labs, that says a lot - along with symptoms, of course.
-

[ 10-10-2010, 02:20 PM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
-
http://www.lymeinducedautism.com/images/Lymewhat_is_it_part_3,_LIA.pdf

LYME DISEASE Considerations in Diagnosis and Management

June 26, 2008 Lyme-Autism Connection Conference

125 pages - Powerpoint presentation

--------------

By the same author as above, Chapter 1 from the book "Insights Into Lyme Disease Treatment"

http://www.lymebook.com/steven-harris

---------------

http://www.amazon.com/Insights-Into-Lyme-Disease-Treatment/dp/0982513801/ref=sr_1_1?ie=UTF8&s=books&qid=1272566632&sr=1-1

Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies

Connie Strasheim (Author), Maureen Mcshane M.D. (Foreword), Thirteen Lyme-Literate Doctors (Contributor)

===========================

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/2/13964?

Topic: How to find a LL ND (naturopathic doctor), acupuncturist, etc.

Includes how to find an ILADS-educated LL ND, an Acupuncturist, a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc.

* Includes many articles and books on complementary / integrative methods - & RIFE links.
-
 
Posted by Keebler (Member # 12673) on :
 
-
I don't know if this part will be streaming or not, but you'll want to get all the details:

http://ilads.org/lyme_programs/lyme_events_video.html#page=page-1

The Eleventh Annual ILADS Lyme Disease Conference

Pediatric Lyme by Ann F. Corson, MD

Friday, Oct. 15

12:30 PM - 1:30 PM [3:30PM - 4:30 PM eastern]

This session will discuss how clinical syndromes differ in children. It will offer common antibiotic regimens in children

=========================

If you've not yet found this group, you may want to connect to the Lyme in Autism group (not sure how that is phrased, though, it may be reversed wording).
-
 
Posted by Keebler (Member # 12673) on :
 
-
http://www.publichealthalert.org/

Public Health Alert - newspaper - Investigating Lyme Disease and Chronic Illness in the USA

---------

http://www.publichealthalert.org/archives.htm

Archives

===============

Lyme Induced Autism is featured in the last two issues of Public Health Alert - below are many archived links on the same topic.

* http://www.publichealthalert.org/Articles/scottforsgren/LIAF%202010-%20pt1.htm

From Roadblocks to Recovery: LIA Conference Unites Practitioners and Patients and Offers Hope: Part 1

- by Scott Forsgren - September 2010 - in PHA

--------

* http://www.publichealthalert.org/Articles/scottforsgren/LIAF%202010-%20pt2.htm

From Roadblocks to Recovery: LIA Conference Unites Practitioners and Patients and Offers Hope: Part 2

- by Scott Forsgren - October 2010 - in PHA

========================================================

* http://www.publichealthalert.org/Articles/marybudinger/liaf.htm

Lyme Induced Autism Conference Opens Eyes - by Mary Budinger - September 2008 in PHA


* http://www.publichealthalert.org/Articles/miscellaneous/Lyme-Autism%20link.htm

Autism and Lyme Disease are Connected, Study Finds - September 2008 in PHA


* http://www.publichealthalert.org/Articles/laurazeller/precious%20miracle.html

Precious Miracle - A young family struggles to overcome Lyme-Induced Autism

by Laura Zeller - April 2008 in PHA


* http://www.publichealthalert.org/Articles/tamiduncan/a%20meeting%20of%20medical%20minds.html

A Meeting of the Medical Minds - Lyme-Induced Autism Foundation Holds Think Tank for Medical Professionals

by Tami Duncan with contributions by Dr. Jeff Wulfman M.D. - April 2007 in PHA


* http://www.publichealthalert.org/Articles/cathyblanco/long%20journey%20home.html

THE LONG JOURNEY HOME 
The Incidence and Rise in Autism and How it Relates to the Lyme Epidemic

by Kathy Blanco - March 2007 in PHA
-

[ 10-10-2010, 05:51 PM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
-
Page one: http://www.townsendletter.com/Oct2009/dispatch1009.html

Page two: http://www.townsendletter.com/Oct2009/dispatch2_1009.html

From the Townsend Letter
 - October 2009

Dispatches from the Front Lines of Autism & Lyme Disease


- by Mary Budinger

Note: A shorter article by this author appears in PHA, Sept. 2008, linked in post above.
-
 


Powered by UBB.classic™ 6.7.3