Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Just discussed it briefly but told him I would like to discuss it more. There has been no follow up on
him and he is experiancing wide and varied symptoms but doc(same one I saw for several
years) can't find anything wrong with him. I would say thyroid disease if evident, also he has
apnea he has to use cpap. I stopped to caution a crew about prevention sprays and he said OH I had
to shot to prevent it. Is there anything you would you ask him about. He said he has had
several problems they can never find anything wrong for. He has even had a whole body scan. Let
me know if there is anything I could ask that may be relevant.
-------------------- 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
| IP: Logged |
bettyg
Unregistered
posted
hi my kentucky friend,
how nice ... may i suggest expanding your subject line, what would you ask him about lyme vaccine?
then you might get more readers/replies since the board has been full of posts about vaccine.
quote:Originally posted by Lymetoo: He needs to be tested for Lyme disease.
At least 1000 people sued Glaxo Smith Kline over the vaccine. It GAVE them Lyme.
I bet some of the lyme controversies stems from that unfortunate vaccine. Many IDSA panelists had financial interests related to development of this vaccine.
To pass trough FDA they needed testing criterias (who is infected , who is not) "fit the profile". So I bet they made criterias of lyme fit the vaccine.
Posts: 856 | From MA | Registered: Jul 2009
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
My understanding is that the vaccine is synthetic. There are no actual live or dead parts of borrelia so he doesn't have lyme FROM the vaccine. Doesn't mean he doesn't have lyme though.
I've read that the vaccine sets off an immune response in certain people due to their genetics. Don't know how accurate that is.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
The human body may confuse Borrelia burgdorferi with its own tissue * LYMErix, the US-Bb-vaccine on Osp-A-basis, has been recalled because of side-effects (Feb. 2002) * Some of side-effects may be caused by "molecular mimicry" of Osp-A with hLFA-1 2 - arthritic complaints o possibly impaired leucocyte-funktion * Part of the side-effect can be induced (in this way) without vaccination * Cross-reactivity of 41kD with myelin of peripheral nerves 1 1. Aberer, Ann Neurol 26, 1989, 732-737: Molecular Mimicri and Lyme Borreliosis: A Shared Antigenic Determinant Between Borrelia burgdorferi and Human Tissue 2. Steere AC, Gross D, Meyer AL, Huber BT; J Autoimmun 2001 May;16(3):263-8; Autoimmune mechanisms in antibiotic treatmentresistant lyme arthritis http://www.everth.de/assets/images/Incidence_prevalence_Lyme_Disease_Germany.pdf
-------------------- 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
| IP: Logged |
posted
A lot of people who had the vaccine, before or later also got lyme disease, since it did not protect against it that well anyway.
I also thought that because I had the vaccine, I didn't need to worry that much. I was told it gave me 90% protection from lyme.
I did get other tick bites I am sure and when I finally figured out that I might have lyme even though I had the vaccine, I did test positive on bands that were not specific to the vaccine.
I think that is the case with lots of these people. It is either an autoimmune reaction to the vaccine or they had lyme already and it was activated or got lyme later on, like me.
Just wanted to let you all know that even though I had the vaccine and have the HLADR4 gene, got lyme afterwards and went 7 years undiagnosed, I was able to recover by 95%(only thing left is fullness in ear and some sound sensitivity, which may be damage from the abx. and not even the infection at this point) and have been off treatment for a year now.
So, it is not hopeless for someone who had the vaccine to recover. I was on abx. for 17 months and also used other things like rifing.
So, please ask him to get a western blot from Igenex, see what antibodies are reactive on it, and tell him that he definitely could have gotten lyme after or before the vaccine. Also, if he has lyme, he can get better even though he got lymerix!
Posts: 871 | From NJ | Registered: Mar 2007
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
That answers a lot of my questions maureen. Thanks.
-------------------- 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
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
maureen
That's great news!!
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
posted
Why would the IDSA encourage a vaccination for Lyme when it's such benign disease?
I mean, all one needs is a few weeks of doxy and then you're fine.
-------------------- Diagnosed with :yme and mycoplasma pneumonia Aug 08. Treating with Doxy and Ceftin ever since. 15 sessions in hyperbaric o2 chamber Posts: 183 | From all around | Registered: Jul 2008
| IP: Logged |
posted
LOL- jamieL.... although when you look into a lot of vaccines now (flu, chicken pox, other diseases that were gone before vaccinations made it to market).... you will find that vaccinations more than likely hurt people than help them....it is all about $$$$$, not the people...i think that was the case with lymerix as well as others.
Posts: 871 | From NJ | Registered: Mar 2007
| IP: Logged |
posted
glad i could help a little pinelady.... thanks for really devoting a lot of time, research, and energy to this, i have seen other posts by you regarding lymerix.
thanks Terry!!!! I am very happy to be where i am today!
Posts: 871 | From NJ | Registered: Mar 2007
| IP: Logged |
posted
I had the lymerix vaccine in 1999/2000 (3 shots). I did not feel immediately "bad" afterwards, just some symptoms that I would attribute to aging. I did go camping with my youngest son in the spring of 2008, in an area that is infested with ticks (would guess most campgrounds in the Northeast are).
I never saw a bullseye rash but asked to be tested by the regular doc in Nov 08 as I had some symptoms and my older son was diagnosed with lyme in Oct 08 (had all bands positive). He was also camping with us.
Results from Labcorp was positive Elisa and western blot positive Igm (bands 39 and 23) and negative on Igg (bands 41 and 30). Was given 100 mg doxy for 30 days (usual). Floundered from then to last month with the regular course of ID docs, rheumatologists etc. Usual reply - treatment was adequate. Found an LLMD and went last month.
Was retested by MDL - Elisa is positive. Negative on Igm (no bands) and equivocal on Igg (41, 30, 31). Have app't with LLMD next week who has also ordered an MRI of spine and brain.
I just don't know what lymerix did to me, if the positive results are in part related to lymerix or not. Guess the MRI's will shed some light. Is this chronic, was 100 mg proper?
Any help ..
Posts: 749 | From State full of ticks | Registered: Dec 2008
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You can have IGeneX do a band 30/31 test that rules out any cross-reactivity. It tells whether the bands 30 and 31 come from Lyme or not.
On the other hand, Lyme is a clinical diagnosis based on symptoms. Since you know you've had it before, there might not be much of a point in more testing as we know symptoms can come back.
If you're having symptoms and you've had exposure, I'd say you need more treatment. 100 mg is a small dose, typically 200 mg twice daily is the dosage for Lyme. I'm glad you're seeing an LLMD next week!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Wow I don't know what it did either. If it was Lyme you would expect to see some IgM in you. On the
other hand if you had the vaccine it could be that it is preventing them from showing or the test-not
done by Igenex just did not pick up on them. Igenex tells you if the confirmation test sample
did not contain the material it will not be found, so like six said it is based on symptoms.
And I too am glad you are seeing a LLMD for treatment for you and your son.
-------------------- 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
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
My LLMD told me he believes 200mg. doxy can make it dormant but you need at least 400mg. doxy for 6++ weeks to kill it. He's ILADS educated.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
quote:Originally posted by geo: I had the lymerix vaccine in 1999/2000 (3 shots). I did not feel immediately "bad" afterwards, just some symptoms that I would attribute to aging. I did go camping with my youngest son in the spring of 2008, in an area that is infested with ticks (would guess most campgrounds in the Northeast are).
I never saw a bullseye rash but asked to be tested by the regular doc in Nov 08 as I had some symptoms and my older son was diagnosed with lyme in Oct 08 (had all bands positive). He was also camping with us.
Results from Labcorp was positive Elisa and western blot positive Igm (bands 39 and 23) and negative on Igg (bands 41 and 30). Was given 100 mg doxy for 30 days (usual). Floundered from then to last month with the regular course of ID docs, rheumatologists etc. Usual reply - treatment was adequate. Found an LLMD and went last month.
Was retested by MDL - Elisa is positive. Negative on Igm (no bands) and equivocal on Igg (41, 30, 31). Have app't with LLMD next week who has also ordered an MRI of spine and brain.
I just don't know what lymerix did to me, if the positive results are in part related to lymerix or not. Guess the MRI's will shed some light. Is this chronic, was 100 mg proper?
Any help ..
The cross-reactive bands from the Lymerix Vaccine are bands 31 and 34 kDa.
After Dearborn (where the Second National Conference on Lyme Disease Testing was held), these two bands were removed from future testing and CDC reporting because of this vaccine coross reactivity, even though one could inform their diagnosing doctor of whether they had ever been vaccinated.
Igenex *does* test for these two bands, since they are two of the most relevant bands for Lyme infection (barring a Lymerix vaccination).
Here's an important article that discusses the history of the politics, testing, etc., if you are interested in more info:
For even more helpful information specifically about diagnosis as it relates to Lyme testing, please read the below link - it includes a clear explanation about testing from one of our most experienced LLMDs:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 17 hens wrote:
"My LLMD told me he believes 200mg. doxy can make it dormant but you need at least 400mg. doxy for 6++ weeks to kill it. He's ILADS educated." --------
Are you sure this doctor is ILADS-educated? Are you talking about lyme? If so, there is a vast body of research saying that six weeks is not nearly enough time to treat lyme.
Six months, maybe, for treatment minimum but I've never heard of an ILADS-educated doctor who thought 6 weeks' treatment could have any lasting impact.
Most LLMDs would usually do combination treatment in order to address the cyst form, which doxy cannot do. -
[ 03-17-2010, 05:00 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
My treatment was by my regular family doctor, who followed standard non ILADS protocol.
Posts: 749 | From State full of ticks | Registered: Dec 2008
| IP: Logged |
posted
Just to touch on what TerryK wrote. I've also read that those with a specific blood-type were severly affected with the Lyme vaccination; causing joint problems and severe disability.
I don't have any resources to share, but if you do a Google search you may find information.
Posts: 829 | From MD | Registered: Dec 2009
| IP: Logged |
posted
The gene is HLA-DR4. It was believed that those who had that gene and given the vaccine, could have developed (and many did) an autoimmune reaction, causing lyme arthritis.
I have heard that you may need to do an antibiotic challenge to get more antibodies to show up on the test prior to testing for lyme (if you have had it awhile). Maybe someone here can guide you on that, because I am not sure what is recommended with that.
What are your symptoms? If you were positive by Labcorp on bands 23 and 39, then you definitely have lyme and it was not from lymerix, as those are not specific to the vaccine. You definitely did not receive adequate treatment back then, so it could have become chronic.
I would think that if you did not have symptoms immediately have the vaccine and you had a positive lyme test through labcorp (positive on bands not specific to the vaccine) then you are dealing with lyme now and not the after effects of the vaccine. I would treat for lyme disease.
Posts: 871 | From NJ | Registered: Mar 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
hugs
![[woohoo]](graemlins/woohoo.gif)
Printer-friendly view of this topic