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» LymeNet Flash » Questions and Discussion » Medical Questions » Newly Diagnosed, need some advice

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Author Topic: Newly Diagnosed, need some advice
littlelady
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Hi everyone,
I was just diagnosed as having the early stages of lyme disease two days ago. I found a tick 11 days ago and a rash 8 days later. The dr put me on amoxyicilian and acted like I would be fine, pending no fever and the rash goes away. After reading through several things it seems like Lymes is something that doesn't go away. Is that true for an early diagnosis? Also can I pass it on to my children through pregnancy and/or breastfeeding? I have a 3.5 month old right now that I am breastfeeding, I dont want her to get it.

Posts: 8 | From Kansas | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
Lymetoo
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YES !! You can pass it on through breastfeeding!!!!

You CAN get over it completely IF you get adequate treatment and for a long enough period of time.

Since you're breastfeeding, your dr probably didn't want to give you doxy .. which is preferred since you may have coinfections along with the Lyme.

But since you shouldn't be breastfeeding when you have Lyme, then I would see about the doxy.

If it were ME with a new bite, I would want 400mg of doxy per day for 6-8 wks minimum.

How much amoxy are you on? ( it will be higher in mg than the doxy )

Take a photo of the rash and take one with a ruler or measurement next to it .. and one with the date from a newspaper next to it and one with your face in the pic .. if you can.

You may need this to prove you had Lyme later on .. esp for insurance as they won't want to hear about a prolonged case of Lyme .. which could happen.

Let's be hopeful though and get this treated RIGHT the first time!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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up for more comments

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94590 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
littlelady
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quote:


How much amoxy are you on? ( it will be higher in mg than the doxy )
[/QB]

Im on 1750mg per day, have a 10 day dosage.
Posts: 8 | From Kansas | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
bettyg
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welcome littlelady [Smile]


at least you were JUST BITTEN and have a wonderful chance at being "cured" if given LONG ENOUGH & STRONG ENOUGH ANTIBIOTICS.

in what i'm attachign below, print off the DOSAGES/MEDS FOR ADULTS/KIDS lyme guidelines and i'd print off dr. b's entire lyme guidelines so you know of other stuff to look out for too!!

tutu gave you good info above!


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


lyme disease and CO-INFECTION symptoms lists .... check it out..
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386


Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" .
http://www.ilads.org/lyme_disease/treatment_guidelines.html


PAGES 17-19 discuss ADULT & KIDS MED TREATMENTS!
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/80440?#000006
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

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77378

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

TREEPATROL'S NEWBIE LEARNING LINKS ... over 1000 links of good info and guidelines galore!! MUST SKIM & READ !!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/29917
************************************************************************


Betty's suggested POSTING GUIDELINES . 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 ``TWICE`` after each paragraph; we need that space for comprehension.

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.
----------------------------------------------------

I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.

http://turnthecorner.org/lyme-disease-quick-facts.htm

I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on.
By member Aimee, 7.11.09
------------------------------------------------------

People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.

To find your state group, go to
http://health.groups.yahoo.com/group/statenamelyme

Type your state name and lyme as one word, like this -
http://health.groups.yahoo.com/group/newyorklyme

South Carolina is the only state that needs a hyphen between the statename
and lyme, e.g. http://health.groups.yahoo.com/group/southcarolina-lyme

The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
*******************************************

This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/


TESTING

You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:

www.igenex.com IGENEX

-----
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know.
========================

VERY important to read - even BEFORE testing:

Dr C's Western Blot explanation is discussed here:

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

"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.

Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.

Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.

Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.

Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.

But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
===========

TREATMENT *** www.ilads.org

ILADS
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.


UNDER OUR SKIN dvd LYME DISEASE documentary,
www.lymediseasefilm.com
go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!

HERXING REACTIONS ... understanding them!
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=041517


please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.

IGENEX , CALIF. BLOOD TESTINGS ...check current $$!

OCT. 2008 PRICE LIST ... info only!! Showing what tests they do. PRICES HAVE GONE UP ON SOME!

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/78648?#000003


* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be!
* Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.

* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes

* The below tests were done for ME; you MAY NOT NEED them all ok! :

* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still.
*
* *******************************************************
* OPTIONAL ONES ARE:

* co-infection panel for YOUR AREA OF COUNTRY;
* PCR WHOLE BLOOD...this is what my LLMD ordered!

It's PREPAY! unless you are on medicare; IGX will file the
paperwork & it's FREE to you.

go to www.igenex.com and read over their info.
Prices go up twice a year: MAY and NOVEMBER!!

*
* have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!

* Also, call 1-800.832.3200 for CURRENT PRICES!
* They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!

* You need to DOWNLOAD IGENEX's required form.******************************************************
*
* MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.

Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg 
*
* When you get your results, please post them in MEDICAL;
* Post ONLY the POSITIVE & IND ones ....
not the negative ones!

GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!

OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=063751


* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!

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

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lymetime
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I would be all over this and stop breast feeding asap. I would monitor the child for signs.

Get in control of this right away or you can suffer many more times over...

Posts: 48 | From california | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
Lymetoo
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quote:
Originally posted by lymetime:
I would be all over this and stop breast feeding asap. I would monitor the child for signs.

Get in control of this right away or you can suffer many more times over... [/QB]

Absolutely!

10 days of amoxy is about 6 wks short of what you'll need to get you WELL. You don't want this "ingrained."

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94590 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Shosty
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Make sure that your amoxicillin dose is high enough, and that you take it long enough. I think this would be 6 weeks, but longer is even better.

Your child will probably get amoxicillin in breastmilk (this is easy to look up) but may not get the Lyme bacteria through breastfeeding. This idea is controversial, and transmission that way is not a sure thing, at all.

I don't know about you, but advice to "just stop breastfeeding" is not a simple matter to follow. Do you use bottles?

If you give up nursing for a 3.5 month old now, you are giving it up permanently. The baby will not go back on the breast. It can be emotionally difficult for a child to suddenly go off the breast. Weaning can take time.

I would do the amox., at a good dose and good duration, continue nursing, and find an MD who understands breastfeeding babies (a challenge that may be harder than finding a good Lyme doctor) who could perhaps prescribe amox. for the baby too, or tell you if the baby is getting some of your amox.

p.s. La Leche League is a great resource for any questions needing help or research with breastfeeding. If they are not in the phonebook, ask your OB/GYN or midwife.

[ 07-31-2009, 08:27 PM: Message edited by: Shosty ]

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Lymetoo
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Up for littlelady. Let us know you've read the replies. We want to help you and your baby!!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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littlelady
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Thanks everyone for your replies. Ive contacted pretty much everyone I can about my daughter and breastfeeding and everyone, including LLL, has told me that its fine to continue.
However Im headed back to the dr tomorrow as my 10 days of amoxy is up tomorrow and I still have a bullseye rash, its lighter but still there and the dr thought it would be gone. Also today pretty much my entire body broke out into hives. So I may be put on a different medication that may not even allow me to continue breastfeeding.
Im fairly devastated at the idea of not breastfeeding anymore but I only want to do whats best for her, its why Im breastfeeding to begin with. So I guess Ill find out more tomorrow.
I really appreciate your help and if anyone else has any comments/ideas Im open to them. Anyone else with hives?

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seekhelp
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Littlelady, IMO what's better for your baby is to never get this HORRIBLE illness. [Frown] I understand your frustration. Taking the big picture into consideration is important. I don't believe the IDSA thinks it can be passed via breast milk. Only the bite of a specific type of tick.
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kitty9309
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I had Lyme when pregnant with both of my children, but didn't know it.

I nursed each of them for nearly 2 years.

They are both fine and healthy at nearly 11 and 13 1/2.

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Aniek
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I believe the ILADS guidelines, the first link on this page: http://www.ilads.org/guidelines.html has goes into detail about the treatment of early Lyme disease.

The trick is to treat it early and treat is strong enough. If you still have any symptoms, don't let the doctor stop treatment.

--------------------
"When there is pain, there are no words." - Toni Morrison

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sometimesdilly
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little lady- call dr. j in new haven, asap.

no one else can advise you better about the odds of passing on Lyme and possibly, co-infections via breastfeeding and what the best options are for you and your baby.

i feel for you. been there...

dill

Posts: 2505 | From lost in the maze | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
Polina
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Here is current link for treatment guidelines from ILADS. August 2010.
http://www.ilads.org/lyme_disease/treatment_guidelines.html

Posts: 3 | From Frederick | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
   

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