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» LymeNet Flash » Questions and Discussion » General Support » Treat or not?

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Author Topic: Treat or not?
Tarnya
Junior Member
Member # 17673

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Hi, I am a new member from England hoping to receive some help and guidance from other members and experts. We have NO lyme Paediatricians in the UK, and are having to learn about Lyme mainly from the internet!

Our issue is that whilst our UK paediatrician (he has NO experience of Lyme himself) has received guidance for our son's treatment from a US Lyme Paediatrician, and has agreed to follow it, he has NOT taken the US doc's advice for treating our daughter as her symptoms are less convincing to him. We are now considering self treating her by buying drugs off the internet, which is a frightening prospect! However, WITHOUT a UK docs agreement to treat, we are totally on our own.

Both children's history as follows:
Our 5yr old son was bitten as a baby, we were given incorrect advice at time of bite by British medical profession and told to leave tick attached, cover with vaseline, and no abx prescribed. He has now been diagnosed with Lyme and Babesia with positive bloods from Igenex, iritis and neuro pyschiatric problems, among many other sypmtoms. He is receiving treatment now thankfully and is slowly improving.

My worry and questions relate to my 3yr old daughter. She has no history of tick attachment, however obviously same genetic make up and lifestyle/rural exposure. We recently had Igenex test results as follows for her:
Western Blot IGM
31 IND
39 IND
41 ++

Western Blot IGG
39 IND
41 +++
45 ++

Serum PCR
Genomic Negative
Plasmid Positive
Positive confirmed by Southern Dot Blot

Babesia Fish RNA = Negative
Babesia Duncani:
IGM 1:20 Titer
IGG 1:80 Titer

Her symptoms are mild and have only been noted by me since early October 2008. The most consistant being, dry cough, pale complexion and dark under eyes. Over Christmas she developed a rash that was mottled and spread up her right leg, down her left, then up her trunk, down her arms and finished by spreading across her cheeks and nose. She is off her food. On occasions she has mentioned her throat, leg and feet hurt. Frequently she complains of feeling sick, and has been on occasions, and generally she has become more irritable.

We desperately don't want her to get as sick as her brother, however, do not wish to treat her without UK medical help (or unnecessarily).

What should we do? We would welcome any thoughts on this. Many thanks

Posts: 7 | From United Kingdom | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator
Geneal
Frequent Contributor (5K+ posts)
Member # 10375

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So help me here.

Her PCR is positive for Lyme even though her Western Blot isn't CDC positive.

Right?

Just want to make sure I am reading the tests right.

I have a 7 and a 5 year old with congenital Lyme.

They were diagnosed at age 4 and 5.

They both did liquid zithromax with diflucan as needed.

They have moved up to swallowing pills and are on amoxil at this time.

Is the pediatric Lyme doc in the US aware of your daughter's symptoms?

Blood and PCR results?

Maybe you can convince both docs to give

Your youngest a 28 day regimen of antibiotics.

Then wait ten days and retest via Igenex.

May help more positive bands show up if this is what the docs are looking for.

My daughter's Igenex test was IND on bands 34 and 39 (IgM) with 41+.

She also was highly symptomatic with joint pain, fatigue, etc.

She also caught bacterial pneumonia twice in 10 days.

You may want to consider getting yourself and your husband tested as well.

Likely you've all been in the same places at the same time.

Hope this helps.

Hugs,

Geneal

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Tarnya
Junior Member
Member # 17673

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Dear Geneal
Thanks for your help. I will try and answer your questions.

Correct, my daughters Igenex results were CDC negative, yet positive PCR (serum).

I believe the US LLMD was emailed my daughters symptoms along with her blood/PCR results.

US LLMD says treat her now. UK doc says insufficient symptoms/evidence to do so.

Would 28 days abx treatment exaggerate/encourage symptoms, like a herx? As "sufficient" symptoms are what the UK doc thinks are lacking..... He is not a lyme doc, and has admitted he does not know what symptoms would convince him........

Yes my husband and I will get tested in the near future, thankfully neither have any symptoms to concern us presently.

Thanks again for your help

Tarnya

Posts: 7 | From United Kingdom | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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tarnya, check your profile for 2 england llmd names i have and sending you!!! hope this may help a little.

most englanders come to east coast for treatment and especially to kids llmd, Dr. Jones, connecticut; AMERICA'S NO. 1 KIDS LLMD!


Welcome; i'm so glad you found us!! You've come to the right place for education and support!


Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @

http://www.betterhealthguy.com/images/stories/PDF/LYMDX8RX2008-October.pdf

DebAZ's 12.08 comparison of 05 to 08 new guidelines:

Differences in newest Guidelines compared to 2005 Guidelines

Page 25 26 and 27
Added section
"Sorting out the co infections"

Page 28
New info given to get supplements from additional places

In all areas of Supplements
there has been various changes and additions to each description
and i advice people to re read the full supplement section as well the
following additions to the whole supplement section:

Basic Daily Regimin
NT Factor Added

Alternative Treatments
CITICHOLINE Added

Immune Support
Transfor factor Added

For Fatigue
Took out "For Fatiuge" section

Other Optional
Vitamin D Added

Page 31
"Lyme Disease Rehabilitaion"
is rewitten and added to

He mentions Flexcreme (Flex Cream) by Pharmanex as great for body pain

. suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.


Dr. B's Supplement List
http://www.lymepa.org/Nutritional_Supplements.pdf


this link, making the most of your LLMD visit, may help you also.
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=020605#000005


please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you!
@ http://tinyurl.com/58eyou

sorry, link takes you to END vs. beginning, so just use UP ARROW and go to the TOP for detailed info! thanks!


Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!

Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.

***************

please go to my newbie links, copy the entire thing, and then print this off....


financial burdens compiled by melanie reber
pages 74 - 92; outstanding info there.


also in my table of contents, for FINANCIAL BURDENS, i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
thoughts and prayers headed your way..


Betty's POSTING GUIDELINES

When you post or reply, please break up your solid, continuous block text [Smile] welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.


please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.


now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.


if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.


NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.


IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.

specifically, delete the first 4 characters of 2ND LINE of a ""


[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox


then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND


we thank you for helping us; [Wink] otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.


LYMETOO'S DR. C'S EXPLANATION OF WESTERN BLOT TESTING!

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

PRINT THIS OFF the full explanation, and then CIRCLE the numbers that coincide with your positives, IND! That will explain your no. results!

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