posted
Hi everyone, just was wondering, has anyone received the lyme vaccine which was available in the late 80's?
I have yet to be positively diagnosed w/lyme via numerous blood tests and was told that the vaccine may be masking whether or not I do have lyme.
I have been suffering for over 3 yrs. and have been treated with antibiotics in the past both IV and oral. The diagnosis was done by muscle testing but not blood work.
I don't know where else to turn and my current ILADS physician doesn't want to give me any antibiotics due to the fact that nothing positive is showing up in the various blood work ups.
Has anyone else experience this and if so, what did you do? Thanks so much for reading this and your responses.
[ 08-26-2013, 02:41 AM: Message edited by: Robin123 ]
Posts: 84 | From New Jersey | Registered: Aug 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i dont believe you are seeing a real ILADS doc if s/he said that
vaccine was taken off the market because it made 30% of those who took it permanently ill
i am too sick to help right now-please research on here and at ILADS
docs often use the term ILADS to get patients...there is no real certification or anything
others will come soon to help
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
It was Igenix and it was back in 2010 but after that, numerous blood tests were performed to check for co-infections. There was two bands, I believe with Igenix. Would have to look the results up since it was back in 2010.
Posts: 84 | From New Jersey | Registered: Aug 2010
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posted
If you can find the test, you'll at least know more about what's going on. Sounds like you're saying you do have some positive bands.
Also, Lyme doctors know patients don't always test positive who have Lyme. They often treat clinically, based on history and symptoms.
I also don't think you're seeing an LLMD and suggest that you post in Seeking for referrals.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
It's important to know which bands were positive. Let us know.
Posts: 705 | From WA state | Registered: Jul 2011
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Even the bands that are marked as -/+ are considered positives. Something was there, just not as clear.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Not that it's a big deal, but I believe the vaccine came out in late 1998 or 1999.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
Ok, I pulled out the results from the Igenex test which was done in 2010. Here are the results: IGENEX IGM Result CDC/NYS Result - all were negative with one "indeterminate" for the #41 band. For the IGENEX IGG Result CDC/NYS Result - bands 23-25 had a + after it, band 31 had ++++ after it, but was told the CDC took this out because of me having the Lymerix vaccine, band 34 had +, band 39 had an "indeterminate", band 41 had +++ and band 58 had +. Hope this helps everyone and thanks again for helping me with all this.
Posts: 84 | From New Jersey | Registered: Aug 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Can you find an ILADS-educated lyme literate MD (LLMD)?
With those numbers, your experience with the lyme vaccine and your symptoms, I'm sad to say that it sure does look like lyme is involved. I would say "absolutely" but will reserve that for a proper LLMD to determine.
The sooner you can get to a real LLMD, the better. Be sure to tell of the vaccine history, etc.
Sorry. Still, with a good LLMD to better assess and guide you, there is always hope. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ohhh. Backing up to re-read your post, I see that you say:
" . . . don't know where else to turn and my current ILADS physician doesn't want to give me any antibiotics due to the fact that nothing positive is showing up in the various blood work ups . . . ." (end quote)
So, then, you have an ILADS educated doctor. Still, it seems to me like you are left out in the cold.
Not all LLMDs are equal, even if ILADS members.
You say you've treated with various approaches and are still ill. IMO, a good LLMD would never drop a patient when still ill. There is more to consider, of course. A different LLMD may have other ideas and better expertise.
Lyme, of course, is not the only consideration. Still, it is nothing to just ignore because of lab tests.
You say nothing positive is showing up in current blood work ups. So, this would be now. What are the more recent lyme tests, then? Do they have any positive bands?
While we all know that test in 2010 is very telling and symptoms certainly can hold on for many years - and treatment of many years is often required - it seems he's ignoring that 2010 test entirely.
What about other TBD tests? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- He may also be concerned with the politics of treatment and require a new current IDSA positive? If so, then, his hands would be too tied to be a proper LLMD.
Just wanted to mention the fact that some LLMDs are finding themselves unable to actually treat with all the pressure from the IDSA.
You need to find out if this is the case. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hi Keebler, I have an appmt. with this doc in Sept. He did do recent blood tests for numerous co-infections and nothing showed. I am thinking to re-take the Ingenex test again since it has been 3 years but it isn't cheap as you know. I have spent a fortune on finding out what is wrong and it's getting tougher and tougher to put out extra money since I am currently unemployed. Thanks so much for your suggestions re IDSA pressure.
Posts: 84 | From New Jersey | Registered: Aug 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- IMO, you do not need another lyme test as long as symptoms persist. First, find out if it would even help with this doctor.
It's unclear how long you've been treating but most LLMD know it can take years and many - many - rotations and various combinations.
The Advanced Labs test may offer certain advantages in your case over other tests. But there is no test that can prove lyme is gone. Symptoms really matter. A brilliant LLMD is so essential. One who won't stop thinking, exploring, working at it.
Does this LLMD that you have right now understand the complexities for someone who had the lyme vaccine and then became ill? (no need to answer, just consider that).
Also consider that lyme could have been acquired either before or after vaccine - even if also directly from vaccine. There could have been various infection "events" over time. But the vaccine does complicate things and you need someone who has knowledge specific to this.
More detail below about testing - and other things that maybe have not yet been considered, too. There may be some other stealth infections to consider.
Still, 3 years is not really that long to be treating lyme without remission. It is often the turning point for some, though, where they start to feel better, so frustration is understandable. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Find a Dr willing to treat you so you can get WELL!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I agree with the others.
Absolutely can be reserved for your new LLMD.
If you have these bands, and you have the symptoms of lyme, but your 'ILADS' doc is not treating you...
Time to find a new doc, in my opinion.
Personally, I would save your money on another Igenex Western Blot.
Untreated lyme will actually supress your immune system and you may produce less bands now.
Any LLMD/LLND worth their salt would go by your symptoms, and then confirm by your Igenex Western Blot from 2010.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
To all especially Keebler, thanks for taking the time to think this out for me and all of your references and opinions. My doc cancelled my appmt. this week so I am scheduled to go in this coming Tuesday. Say a prayer!
Posts: 84 | From New Jersey | Registered: Aug 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Hope this all helps. Not sure what kind of "doc" with which you have an appointment (sounds like the same regular doctor whom you've been seen to date? which will likely serve no purpose as he is neither ILADS educated nor LL)
- a LLMD usually takes longer to get in to see. To be sure:
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor - starting with assessment / evaluation.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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