-------------------- IGENEX DX Day Dec 2, 2009 IgM western blot: POSITIVE 18: + **31: ++ **34: ++ **41: IND 58: + **83-93: +
IgG western blot: Negative **31: IND **34: IND **41: +
Antibody Titer B Burgdorferi G/M/A: Indeterminate 1:40 Titer Posts: 20 | From Vermont | Registered: May 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome!
You sure have had your share of kicks, haven't you?
Sorry to hear about it.
I am not a doctor but if I were you I would find a doctor who knows Lyme and who can assess this long history.
In the process they might run tests that are known to be more accurate.
Treepatrol has a link for new members posted on the top of the medical section... and several others here will help get you started in the right direction.
from what little i could read, looks like you have lyme disease. i'll include a link of symptoms by body parts for you but will include my welcome note at this time.
post your broken up version of your post in SEEKING DR. and subject line:
LLMDS NEEDED FOR VERMONT, MAINE, NH, RI whichever are the closest for you...show them there; each has 2-3/state.
see my guidelines below for having SHORTER paragraphs for us neuro patients who can not read or comprehend what you wrote above ok; our brains just can't do that anymore.... xox
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. ****************
MELANIE REBER'S 186 LIST OF SYMPTOMS BY REGION AREA:
posted
Hi and welcome. I too relied on the insurance-covered tests and was negative until I paid $200 for the IGENIX test with which I was positive. I'm glad you are here...
-------------------- Dying is easy. Living is harder. Posts: 257 | From owensboro kentucky | Registered: Mar 2008
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I do hope that I have helped you with the problem with the edit.
Thank you for your patience!
One problem I have is I have no idea when my onset may have been, I never had the rash.
I had my first bells at 14 years old, is it possible I had lyme and was not sick for 4 years?
Maybe the first bells was a fluke?
I thank you ALL for any advice and for the links you have posted.
I am also flat broke from being completely disabled for my entire adult life.
I would welcome any suggestions about covering the costs of these tests.
^_^
-------------------- IGENEX DX Day Dec 2, 2009 IgM western blot: POSITIVE 18: + **31: ++ **34: ++ **41: IND 58: + **83-93: +
IgG western blot: Negative **31: IND **34: IND **41: +
Antibody Titer B Burgdorferi G/M/A: Indeterminate 1:40 Titer Posts: 20 | From Vermont | Registered: May 2009
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bettyg
Unregistered
posted
quote:Originally posted by gothbubbles:
One problem I have is I have no idea when my onset may have been, I never had the rash.
I had my first bells at 14 years old, is it possible I had lyme and was not sick for 4 years?
Maybe the first bells was a fluke?
I thank you ALL for any advice and for the links you have posted.
I am also flat broke from being completely disabled for my entire adult life.
I would welcome any suggestions about covering the costs of these tests. ^_^
yes, your edit helped me tremendously!!
yes, with your early bell's dx, your symptoms could have been hidden until a STRESSFUL event happened to you, and then all hell breaks lose in your body activating thigns .... it did that for me over and over.
are you on SSDI, ss disability insurance, benefits?? if yes, you're on MEDICARE NOW?? IF YES, TESTS ARE FREE FOR YOU. igenex will file the paperwork for you.
here are 2 links of info on financial burdens, etc?
print off the financial one; cross thigns off as you contact folks so you know who you have contacted adn not.
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by gothbubbles:
I had my first bells at 14 years old, is it possible I had lyme and was not sick for 4 years?
Maybe the first bells was a fluke?
I had Bell's Palsy as a teenager, too. I was a little older -- maybe 19ish.
I also had mono and pink eye all within about a three year period. Then nothing.
Years later breast pain started as did pain in my jaw and teeth. Fast forward to 15 years after that and many more things happened to me.
Three years later, a new on-slaught of symptoms developed.
Last fall the next round of symptoms began and this time they nearly did me in b/c they were mostly neurological and psychological.
I guess what I am trying to say is that a person can be infected for several years and the infection can lay dormant, yet flare up at any time.
-------------------- 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
have you found an llmd yet? did he/she put you on doxy?
Posts: 830 | From Colorado | Registered: Mar 2005
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julielynne4
Unregistered
posted
I can relate with your relief to have a diagnosis. That is so great that you were able to get Igenex testing covered!
I know that other posters have given you lots of info and that you have done your own research...but I have to say that in my opinion, the most important thing you can do now is find an LLMD.
100mg Doxy would not be much of anything as far as treating chronic lyme.
It is a start, but please keep reading Burrascano's treatment guidelines and reading through this forum and others.
I am glad to hear you are on your way to recovery! (and by the way, yes you could certainly have had this since you were 14).
posted
Wow.. You have the 83-93.. the DNA of the Bb...good job!
200mg of doxy?? That's only a beginning,.. not enough to kill it out.
You know about herxing, right?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I suspect they are going to start low and slow with
the lengthy history may be best. Prayers for a easy road.
-------------------- 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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posted
Yeah it's 200mgs, 100mgs 2x A DAY so that makes 200mgs a day ^_^
I do know about herxing, and so does my llmd, so I think the plan is to see how I tolerate this amount because I could have bad die-off.
So far I feel mostly the same, except for really bad nausea. No throwing up yet!
Only 4 days into treatment so I don't expect herxing this soon.
I see my md again on the 28th, and I imagine if I'm tolerating this dose well I may have my meds adjusted.
My llmd warned me that this could be a long road, but that I WILL get better.
I like to keep a positive attitude ^_^
-------------------- IGENEX DX Day Dec 2, 2009 IgM western blot: POSITIVE 18: + **31: ++ **34: ++ **41: IND 58: + **83-93: +
IgG western blot: Negative **31: IND **34: IND **41: +
Antibody Titer B Burgdorferi G/M/A: Indeterminate 1:40 Titer Posts: 20 | From Vermont | Registered: May 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
gotthebubbles~ It would be very important for you to also run some other infectious pathogen panels. Consider HHV-6, EBV, and Cpn at Focus Diagnostics lab and Enterovirus at ARUP lab. Also consider other tick borne pathogens...bartonella, babesia, rickettsia, etc
posted
What good does it do if I have hhv-6 and ebv?
Those are viruses and cannot be cured.
Also, I already have tested positive for ebv in the past, like 30% of everyone.
I really think lyme and coinfections--based on my history--are the ticket.
Although if the abx don't help I will look into these routes.
Thank you, Timaca!
-------------------- IGENEX DX Day Dec 2, 2009 IgM western blot: POSITIVE 18: + **31: ++ **34: ++ **41: IND 58: + **83-93: +
IgG western blot: Negative **31: IND **34: IND **41: +
Antibody Titer B Burgdorferi G/M/A: Indeterminate 1:40 Titer Posts: 20 | From Vermont | Registered: May 2009
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Some do have virus' and they like to rear their
ugly heads when given a chance. A lot of us do
supps to try to keep them in check. I take coconut
oil. Among a few others. But the best way to help
may be to get the immune system up with them.
-------------------- 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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posted
Goth - so at least you're on your way now, re tx.
People do treat the viruses. Many treat HHV-6 with Valtrex.
Posts: 13171 | From San Francisco | Registered: May 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
gotthebubbles~ HHV-6 can be cured. Valcyte is often used. I personally know 4 people (one of them being me) that had an HHV-6 infection that was treated and cured.
EBV can also be taken care of (to some extent anyway). It has been taken care of in me (so far).
It's not wise to ignore the viruses. Even if you are sure you have lyme, viruses can be part of the picture.
Here's some info on EBV:
Here is a link to an article about chronic EBV infection:
The criteria he used is: Patients with "high" antibody titers against HHV-6 IgG ≥ 640, EBV VCA IgG ≥ 640 and detectable EA Ab at 1:160 or HHV-6 IgG ≥ 320 if EBV VCA IgG ≥ 1280 and has detectable EA Ab at 1:160 (measured by the average of a minimum of two time points obtained during screening at least 3 weeks apart).
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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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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