This is topic CAN'T figure this out!!! in forum Medical Questions at LymeNet Flash.


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Posted by forgetlogic (Member # 21408) on :
 
Got a a rash in mid june, wasn't sure if it was lyme but compared to the pictures online it looked similar to it. I had 2 blemishes, The only thing is that my rash had only one central clearing, not like a bullseye that has 2 rings and then a central clearing in the middle. ALso my rash didn't expand like it says online. It jus stayed the same size, approx. the size of a nickel.

Anyway,
Just to be safe I visited a regular doctor in late July who put me on doxy for a month. He put me on 200mg a day, but i upped the dose to 400mg and did the course for a month. I didn't have any symptoms before starting doxy (no fever, no fatigue, no joint pain).

While on the treatment i noticed i was more fatigued than usual, but read that it could be a side effect of the doxy itself.

So i finished the course 3 weeks ago but still feel fatigued...i'm not sure what it could be..DO I HAVE LYME? i don't seem to have any of the other symptoms.. i feel great, except for the fatigue. Its a weird feeling of tiredness, as if i didn't get enough sleep, and only seem to have it when i'm not physically active. When i'm working out it doesn't seem to bother me.

WHat could this be? And what should i do now?
Any feedback would be very appreciated.
 
Posted by seekhelp (Member # 15067) on :
 
I have to ask this. How did you magically turn 200 mg a day into 400 mg for the same period? lol.
 
Posted by forgetlogic (Member # 21408) on :
 
After i did research and realized that 200mg wasn't enough, i called a family doctor, explained the situation and she prescribe me more.
 
Posted by Lymetoo (Member # 743) on :
 
I don't know, but I would want to be treated with 400mg per day for at least 6wks or more. Even then, there's no guarantee it's gone.

If you're still having fatigue I would find an LLMD.
 
Posted by gemofnj (Member # 15551) on :
 
well, you could make sure you are taking super b complex (100mg) and a very good vitamin (from a reliable health food store), magnesium (lymies always take this). try this to see if you notice a change in energy or

you could be suffering from a lack of good intestinal flora, which is known as yeast or candida or

you could get tested from IGENEX labs (IGG & IGM) and see if you test positive or

your system may very well be fighting off lyme on its which could have been under treated. a good immune booster such as AG IMMUNE (there are others) could help you get the push you need to overcome or

you could consider ALL of the above.

good luck and keep us posted. [Smile]
 
Posted by Lymetoo (Member # 743) on :
 
Didn't think of yeast. Go to health food store and get some natural yeast killers.

But, I'd still want to begin searching for a dr.
 
Posted by forgetlogic (Member # 21408) on :
 
gemofnj,
how do i get tested with Igenex labs? do i have to do it through a doctor or can i go straight to there labs and get it done right there?

i'm not sure what to do except for getting testing i guess. I know for sure there's no point in doing another course of Doxy until i know for sure what's going on exactly.
 
Posted by bettyg (Member # 6147) on :
 
forget,

i'm taking a short cut for me and just sending you my newbie letter of info; details galore on igenex testing in there .... including WHO can fill out the form to request it. [Smile] good luck


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
 
Posted by Pinelady (Member # 18524) on :
 
I agree= If you still are fatiqued I would seek a LLMD to help you.
 
Posted by MY3BOYS (Member # 17830) on :
 
if lyme is possbile, and rash was there and you did doxy...what about looking into co-infections ???

think having an eval by LLMD would be next move, best of luck !!! praying for you that is not lyme and co...
 
Posted by ericaf (Member # 10929) on :
 
How long did you have the rash for?
 
Posted by ericaf (Member # 10929) on :
 
and I would definitely get tested by Igenex and if you don't know how to interpret the results you can ask here (we've seen a lot of Western Blots) or see an LLMD.

Hope things work out.
 
Posted by forgetlogic (Member # 21408) on :
 
i had a rash for about 2 weeks in june..with no other symptoms
 
Posted by forgetlogic (Member # 21408) on :
 
I'm starting to feel alot better this week, but still contemplatin whether to make an appointment with a LLMD and get tested through Igenex. Is there anyway i can get tested with Igenex (western blot)without having to see and LLMD?
 
Posted by gemofnj (Member # 15551) on :
 
forget,

sorry i didnt see your post earlier.

i would DEFINITELY get an appointment with an LLMD, for an evaluation. also, i would read through the lyme symptoms as you may be having others you havent considered related to lyme and coinfections.

yes you can print from the website tests for the IGG and IGM lyme sequence, but you have to have a dr. sign off on them.

i would recommend #188 & 189 at minimum.

http://igenex.com/Website/
 
Posted by lymetwister (Member # 19590) on :
 
Get tested, you don't want to be where many of us are.

Be glad your catching it in time.

The testing is expensive and has to be paid in cash, but all the money in the world is not worth your health, or even worse, having this disease.

LT
 


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