posted
I was told almost 3 weeks ago that I tested positive for lyme disease and the Dr. my rhuematologist called in antibiotics for me to take for 3 weeks. It was Minocycline and I got sick right off the bat when I took the 1st dose. I had to stay in bed for the 1st week cause I couldn't even move around. My head and neck hurt like crazy couldn't stand to be around sounds or light. I called the office and ask if this was normal they said keep on taking the meds you will get worse before better. At the time I had no clue about herxing or anything else until I got on the computer and started researching. I was diagnose with RA about 11 yrs ago and I don't think I had lyme's then but I know it has been for several years now because my RA meds stopped working and I kept getting worse and worse. I have been through the gamit thinking it waas a flare from the RA. It all makes sense to me now. I will be done with atbx on Friday and see the Dr. on Thursday of next week and he said he was going to do blood test to see if it was gone or not. Can it go away in such a short time?, and how should I approach him about my knowledge and what i have learned in here and other places I have researched without telling him what to do. I am still Herxing I believe because I have only had maybe 3 days where I had enough energy to do anything. My head and neck and back area is killing me. I had my gall bladder out in Dec 08 and thought when that happened I would feel better, I have such stomach problems it swells and looks like I am 9 months pregnant and I have constipation that kills me. I am going to ask my Rhumey if he is lyme literate and if not recomend someone. I live in North Carolina near Boone it is very small town. I am wondering if I got this with ticks in our area then how about the rest of my family and how about my dog? Anyways if anyone has advice for me i will gladly take it. Take Care Laura
-------------------- Laura Barrett Posts: 11 | From Millers Creek, North Carolina | Registered: Aug 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there in NC..
Welcome to LymeNet!
Sorry to hear you are feeling so badly.
It is late.. so just a few points to make real quick.. and then the morning crew should be arriving.
1. Mino can make you VERY ill... herx or not.
2. You are wasting time with that doctor. He knows not what he does. There is NO test that can tell if Lyme is cured or gone. None, notta, zip. Save your money... and don't let him do a test. the negative one will only be used against you, to deny you treatment, by him, other ducks and insurance companies.
3. If your doc thinks taking a Lyme test after having antibiotics is at all useful, tell him to go fly a kite. And tell him that antibiotics can alter the tests to show negative and they don't mean a thing at this point.
4. It is very possible you've had Lyme for a while. So sorry you weren't diagnosed sooner.
5. If your doc thinks three weeks of antibiotics will even make a dent in chronic Lyme, you need a new doctor.
6. To find out if a doctor is Lyme literate, btw- yours is not...
Just ask them one question...
"How do you treat the cyst form of Lyme?"
If they can't answer that immediately.. RUN! Don't walk... RUN away as fast as you can.
Go to Seeking a Doctor section here and post for a LLMD in the area.
Good luck. Glad you are here and are willing to learn!
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Laura it is very important to get copies of all
test results. Some people do turn positive after
a challenge. If they are neg. But many times
there was indicator bands that they were told neg
anyway. So in order to get more bands to show
they do the challenge. You already have a
positive. Now you have to find a LLMD to treat as
most doctors will not treat for more than
prescribed here. They are not willing to treat or
learn that this organism has to be treated like
its cousin syphilis. I don't
think you will find a LLMD who ever starts
treatment with MINO. I am so sorry you have this
but glad you are searching for things to help.
-------------------- 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
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I agree with the above. How can you get proper treatment from a doctor you don't trust enough to share your research and concerns?
My LLMD started me on mino, and I didn't have a strong reaction to it. We have a lot in common, but also everyone is different when it comes to Lyme. A good doc will understand that and work with you.
Take care.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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bettyg
Unregistered
posted
welcome
please break up your entire post into MANY, SHORT PARAGRAPHS and double space between each one for us severely neuro lyme folks who can not read or comprehend as is.
huge thanks, and use my guidelines below explaining how to do this. hugs
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
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. ------------------------------------------------------
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.
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):
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:
"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." ===========
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!
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 $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ 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!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
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