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» LymeNet Flash » Questions and Discussion » Medical Questions » Newbie Here..Scared

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Author Topic: Newbie Here..Scared
meloctober
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Member # 22406

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Hi all. I had tested positive for Lyme Disease six years ago. I went to the ER thought I had the flu, they ran tests sent me home. A week later I get a follow-up call from the ER asking if my MD started me on antibiotics for Lyme. What?! No they hadnt ran to my primary, changed primary's was put on antibiotics for a week and that was that...6 years later after landing in the hospital for a viral infection..I noticed fatique, mood swings, terrible anxiety and almost like OCD like symptoms..none of this runs in my family or history. Went to several Docs who of course told me it was "in my head" finally a Psych Aprn tested me and today "positive lyme".. Im looking for a specialist now that will treat me..Im scared my anxiety will get worse I read all these horror stories online about how Lyme affects you mentally..Im soo scared.. Please any advice support would be appreciated...
Posts: 29 | From CT | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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Please try to be calm, I know it's hard. Get to a reputable LLMD, and he will be able to help you to get better. Stick around here and do your own research. Try to remember that many of those who get well don't have time to post, so most posters here are people who are still sick ... don't let that make you think no one gets well.

Hang in there, and good luck with treatment.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
coltman
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"Psych aprn" ? What is it? Psychatrist? And he tested you for lyme? WOW!
Posts: 856 | From MA | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
Abxnomore
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I'm not surprised. I knew of a young girl who had a FMS dx from a young child and her psych in CT diagnosed her and got her on the right track. She is fine today.

Melo, with treatment you can make big strides. I have sent you the list of LLMD's for your state. You are lucky that you live in a state where there are plenty to choose from and some very good ones.

Hang in there and try to see an LLMD as soon as you can.

Posts: 5187 | From Lyme Zone | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
TerryK
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Welcome to lymenet!!

I'm so sorry you've fallen prey to the standard IDSA treatment mentality. So many people here have a similar story.

Ticks often pass more than just lyme disease so you may have more than one infection. Typical co-infections are bartonella and babesia but there are others.

In my opinion, your best course of action is to seek out and ILADS LLMD. Most have extensive training in TBI's (Tick Borne Illnesses) and can give you proper testing and clinical evaluation for lyme disease and co-infections. Testing for most of these pathogens is poor at best.

You can go to the seeking doctor section of lymenet and put your location in the subject line and ask for help in getting a list of doctors that are close to you.
http://flash.lymenet.org/scripts/ultimatebb.cgi/forum/2?

ILADS is a group of physicians who specialize in treating chronic lyme disease. You will often hear them referred to as LLMD's (Lyme Literate Medical Doctors)
http://www.ilads.org/

You can go here and register and get a list of ILADS doctors that are closest to you.
http://tinyurl.com/6na364

You can also check for your local lyme group here.
http://www.lymenet.org/SupportGroups/

It can take awhile to get in to see a doctor who is literate in treating Lyme disease so don't delay. The sooner you get treatment, the easier it will be to get better. Be sure to ask about cost, do they accept your insurance etc.. It can be expensive but it is well worth it in my experience.

Best of luck,
Terry
I'm not a doctor

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Lymetoo
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There is hope!!! Now you can GET WELL!!

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

Posts: 95344 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936

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TerryK,

I mentioned in my post right above yours that she has already been sent the LLMD list. She's in the right place now getting advice and learning from others.

Posts: 5187 | From Lyme Zone | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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welcome mel [Smile]

would you break up your entire post into many short paragraphs for us severely neuro lyme folks so we can comprehend and read; then we can offer you advise and guideance?

use my guidelines below please, and i have other helpful links here too for you now and later [Smile]
big thanks .... [group hug] [kiss]

we're walking in your shoes; we'll help educate you and give you support when you need to rant or need a shoulder to cry on during the rough days/months ahead. hugs

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

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

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

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; 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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Wimenin
LymeNet Contributor
Member # 15294

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Relax.. follow a simple course of action.. find a LLMD, start treatment, and follow the guidelines for taking abx, supplements, rest, exercise, low stress, etc, etc.. religiously. Realize that it can take a long time to get back to normal depending on how long you've been sick. Youve come to a great place to find front line information. But it all starts with a positive frame of mind that you can and will get better.
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

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I am sorry your doctors did not know the borrelia have to be treated like its cousin syphilis. There is hope to get you well with a good LLMD to treat.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
   

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