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» LymeNet Flash » Questions and Discussion » Medical Questions » I recently had lymes diagnosis. Need help with next steps in SF.

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Author Topic: I recently had lymes diagnosis. Need help with next steps in SF.
nic777
Junior Member
Member # 22226

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Hi -

On June 6 of this year I am pretty sure I got lymes in NY. I was picking ticks off of me on hike. two weeks later, I had symptons that included some facial paralysis, dizziness, eye twitter, joint pain in knees and rash. Took two tests for lymes that came back negative. Demanded that nurse, give me 3 weeks of amoxilicialian. She also gave me two weeks predisone (steroid) and acocliver (about 12 days). started feeling better. Figured i beat it.

Now and for last month or more: I have pain in hips on daily basis. Dizziness. pain in area below my heart. on regular basis. have problems exercsing. depressed often. Numbness in hands 5 x week. Took antibody test last week for lymes. I knew something was wrong in my body. in regards to test, 0-1.2 is normal i was told. i had 1.9. i was told i have lymes. relieved i know what is going on. now i am upset that i have it.

recently went to see person who is accupunturist/herbalist who deals with a lot of lymes patients. she said before i start treatment get more extensive tests know intensity of lymes in body. test for co-infections. she said results take 3 weeks. go to specific lab in palo alto..

I live in SF.

what would you recommend I do next? do i wait till i get results of test back even though i am really feeling symptons? i tried getting top doctor in SF - 1-3 month wait. Am I better off going to NY? I am wondering how people deal with psychlogical aspect of this disease.

thanks for all your help! I really appreciate it.

Posts: 1 | From San Francisco | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
Robin123
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Member # 9197

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Hi Nic - I'm in SF - pm'ing you...
Posts: 13012 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759

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Sounds like you have a case of Lyme.

I sent you a PM too.

Posts: 4590 | From Midwest | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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welcome nic [Smile]

i see my friends took care of your llmds in your area already; good [Smile]

fyi, we have Lyme with NO S on end; named after Lyme, Conn. [Smile]

psychological; come here and post in SUPPORT; we're here to support and educate all and get help ourselves 23/7.

NO MORE PREGNISONE; it suppresses our lyme systems; not good!!


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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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759

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Lyme Friends is a good website to get support, in addition to this site.

The site has a chatroom that is active in the evenings, from around 9 PM eastern time to around 2 or 3 AM eastern. You would need to email one of our moderators named Evan to get a username and password set up for our chat room.

We often have people come into chat because they are down, and need someone to talk to that understands. A lot of us lean on one another.

To join Lyme Friends, go to www.lymefriends.com.

You can access just the chat feature here: http://client11.addonchat.com/sc.php?id=306727

It's busiest around midnight EST.

You'll have to send Evan a username and password for chat only (your password can be something simple like your name) at [email protected], or message him on the Lyme Friends site if you join.

Posts: 4590 | From Midwest | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
DolphinLady
LymeNet Contributor
Member # 6275

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nic777,

Sorry to hear of your struggles and Lyme diagnosis. The San Francisco Lyme Support Group is meeting this Thursday, from 3-5 pm in the ACR conference room at St. Luke's Hospital.

Members range from success stories (folks that are in remission and want to help others) to newbies. However, most are somewhere in between and have been where you are now. We focus on support and learning from each other.

You can contact me at [email protected] or (415)786-9010 for more information.

Hoping you get the answers you need and relief from your symptoms as quickly as possible,
Diana

Posts: 925 | From California | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
TerryK
Frequent Contributor (5K+ posts)
Member # 8552

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Unfortunately I've read many stories like yours. Most doctors who are not members of ILADS (International Lyme and Associated Diseases Society) use the IDSA guidelines to diagnose and treat lyme disease. This leaves many people undiagnosed and untreated.

Many doctors are woefully ignorant when it comes to Lyme disease. If one has lyme disease, it is recommended that steroids be avoided unless they are a life and death situation. I would leave that call to a doctor who is well versed in the treatment of Lyme disease.

There is no way to know the level of infection with any of the current tests for lyme disease. There are some that can help measure the function of your immune system but the lab in Palo Alto (IgeneX) cannot tell you your level of lyme.

Your best course of action in my non professional opinion 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/

A great book that you can read that helps to understand the situation with lyme disease is "Cure Unknown". Written by a Science Journalist who is senior editor for Discover Magazine. She and her whole family faced lyme disease. The book covers a lot, history, science and her personal story and a few others personal stories.

Unfortunately, Lyme is a misunderstood illness by the majority of doctors.

Terry

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
   

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