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» LymeNet Flash » Questions and Discussion » General Support » 6 years and Relapsing Ugh

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Author Topic: 6 years and Relapsing Ugh
O2Btickfree2
LymeNet Contributor
Member # 9742

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Well there is hope for people to have a break from lyme so don't let this discourage you. I did fine for over 6 years. I did not get back totally of what i was before lyme but i was able to do stuff i couldnt while ill for 8 years.

Last year i noticed little things that felt all to familiar. I took abx twice for flu and got very sick while on it. But hoped it was just meds not lyme. Then i fell three times once cracking my head on a door frame. But since last winter after christmas i have lost more and more energy.

Off and on if i was standing my neck and shoulders would ache to the point i had to sit down it was as if someone had sucked the life out of me. It would start in my neck and go all over. However the last three weeks i have had no strength at all again. OH a wonderfull side effect this time im LOOSING WEIGHT fast. Im over weight so this can stay for a long while i will have no problem with that. Last time i gained. Coarse last year seemed like everything i ate put weight on me.

Went to my regular doc and of coarse he dont know a lot about lyme but did put me on abx again. GO to lyme doc Monday. Took my first dose
Yesterday and right away i got neck pain, headache,tingling here and there on my body.

One good thing is its not gonna devistate me this time i know the ropes so i should be able to cope with it better.
Terry

Posts: 112 | From Ohio | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
DaveNJ
LymeNet Contributor
Member # 17362

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Terry,

sorry to hear this....hopefully you are way in front of it. You have the right attitude...but if that changes we will gladly kick your butt.

Keep the Faith,

Dave

--------------------
On my journey to wellness - One day at a time.

Posts: 989 | From NJ | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
O2Btickfree2
LymeNet Contributor
Member # 9742

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thanks LOL
Posts: 112 | From Ohio | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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terry, so sorry you are back with us, but glad you do know the ropes so you can stay on top of it. hugs/kisses for an easier journey this time.

decided to treat you like a newbie in case there is anything below you don't know or it's been updated ok [Smile]


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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Lymetoo
Moderator
Member # 743

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Ugh, I'm sorry you're backsliding.... Maybe it won't take long to get you back up to snuff!!

hugs!!

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

Posts: 95672 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
O2Btickfree2
LymeNet Contributor
Member # 9742

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hey lymetoo havent been in here in a very long time. Seems when you feel better you dont want to even see the word lyme. How are you feeling these days?
Posts: 112 | From Ohio | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
Parisa
LymeNet Contributor
Member # 10526

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Not sure how much attention babesia was getting when you treated last time. I'm not a doctor, but the weight loss makes me think of babesia.

Hope your appointment with your LLMD goes well and you get back to where you were before quickly.

Posts: 984 | From San Diego | Registered: Nov 2006  |  IP: Logged | Report this post to a Moderator
O2Btickfree2
LymeNet Contributor
Member # 9742

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My lyme doc said years ago that the babesia was mild. But im sure if that is an issue he will catch it this time for sure. Love the weight loss tho no matter what is causing it hope it goes and never comes back.

My last two M.D.s did say tho my red blood cells were enlarged?

Posts: 112 | From Ohio | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
   

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