Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by Hannemannn: I have a suspicion that i have LD but im not sure so I think it would be best to test my blood in some good laboratory. How accurate are tests in Igenex? How often there appears wrong negative results? Is it possible to send blood from Finland to Igenex?
Hi Hannemannn,
Igenex testing is very reliable, but not perfect. Igenex tests for more bands than other labs do and they do so with more accuracy.
Your symptoms may be compatible with Lyme, but I don't know if a person can have an Igenex test done in Finland or not.
Igenex has a website (www.Igenex.com). Maybe you could send them an email and ask them.
Best of luck to you.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Han,
Welcome, and glad you found our website!! It has lots of information and resources regarding lyme doctors, diagnosis, treatment, etc.
In the USA, a good LLMD will treat based on a clinical diagnosis, which means 'by your symptoms.' Can you look for a lyme literate doctor that follows ILADS protocol?
Check out the page with lyme symptoms. It is possible you could have lyme and still test negative.
Alot of us over here do test negative also, but we have lyme and are treated for it, many with positive results.
Hopefully you can begin your treatment soon as the longer you go without treatment, the harder it is to eradicate.
good luck and keep us posted
ps - IGENEX is a great lab for tick borne diseases
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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bettyg
Unregistered
posted
welcome finland
i think we have 1-2 others from there! you can find out by clicking on DIRECTORY AT TOP go to 2nd blank line on left side type in finland go to next line and use arrow chosing LOCATION click search it will show all members who showed finland in their profile!
i'm one of many neuro lyme folks who can't read or comprehend long paragraphs, could you edit your post above using my guidelines below? big thanks then i can help you some more 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!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
Maybe it`s easier to read now.
Posts: 37 | From Finland | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
We hear of people from all over Europe getting Igenex testing.
I think they could suggest how to do it best.
Maybe ship in Styrofoam cooler and placed in ice.
I do remember one person here got it there is 2 days direct flight. So it is very possible.
-------------------- 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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bettyg
Unregistered
posted
hanne, thanks for breaking this up for me i read it all above now.
Dr. Bransfield's Reason's for Seronegativity ( the reasons why you can test negative and still have Lyme disease
posted
Luckily im feeling pretty well most of time.
I have reserved time for special doctor, called
neurolog... or something.. If things dont progress
on that way, I have to do all by myself then.
But.. once again question about joints... Is it
typical that joints start to make more and more
in LD. I dont actually have pains in joints. My
chest, elbow and all other joints have started to
make really weird noises. About 6 months ago
every joints were normal.
Noises are not dangerous, but I think those
joints could be the thing that refers to LD.
Posts: 37 | From Finland | Registered: Jul 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Yes, popping sounds from joints are common. I get that sound a lot in my ankles and sometimes my neck. I do not always have pain with the noises.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
Ok. That`s what I thought. Im testing now how food
and cat`s claw effects to my symptoms. I`m trying
to avoid sugar, alcohol and coffee, eating garlic
and cat`s claws and exercising lot.
This seems to be pretty nice and active forum. We
have also one in Finland with includes a lot of
information, but unfortunately there are not many
active members writing to forum.
Posts: 37 | From Finland | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I did not start cracking and popping (everything)
until I started treatment? So something may be
helping you. But you still need to see a LLMD.
-------------------- 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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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
You could try joining EuroLyme. There might be other Finns on the group.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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bettyg
Unregistered
posted
here are the other 3 finland members i found here who showed their location:
Found 4 matches
� # | Displayed Name | Member Status Posts Occupation Location Interests
Bored (Member # 1663) Member More � Registered: 22-09-2001 Send New Private Message � Less 91 Sick leave Finland
BartonFink (Member # 10818) LymeNet Contributor More � Registered: 16-12-2006 Send New Private Message � Less 246 Finland
lojiwa (Member # 16834) Junior Member More � finland
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posted
Pinelady, one serious problem here in Finland is
that there are no single LLMD. And most of
doctors propably think that LD is a simple
disease which can be cured with antibiotics
without problems. There are only few doctors who
know more about LD. The group that maintain
finnish LD site knows a lot about LD.
Unfortunately they are not doctors, so they can
only give information.
Hm... you started cracking and popping after
treatment... Interesting... This may give me some
hope. Yesterday i started taking garlic again
after little break and increased cat`s claw
portion. This morning my toe joint is in pain,
couldn`t get sleep properly and chest makes even
weirder noises. Maybe this is a step towards
better...
One more question... Are antibiotics necessary
when curing LD? Some say they are.
Thanks for your answers again.
Posts: 37 | From Finland | Registered: Jul 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
My LLMD says that antibiotics are necessary for recovery.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by Dekrator48: My LLMD says that antibiotics are necessary for recovery.
My LLMD thinks the same thing. I completely trust him so I think they are necessary too.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I'm with them Hannemannn. I did homemade Colloidal
Silver for 3 mths just to stay out of a wheel
chair. It did help me but not cure. These bugs are
in the cells and it takes a antibiotic that gets
in the cells and will cross the blood/brain
barrier to clean them out while preventing
biofilm formation. It is too complicated to try
to go it alone but treatments like you take could
offer you time to find a LLMD who can treat.
There is a lot of new research coming from Europe
in medical journals. You may contact some of
those authors and get a referral. Just a thought.
-------------------- 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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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. 
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