posted
I'm still on my path to discover what's truely wrong with me. I want to be 100% certain. Positive babs test, negative Lyme test. 1.5 years ill.
Are there any other illness's, conditions that produce a similar waxing and waning of symptoms? (mainly fatigue, brain fog, neck stiffness (pain), anxiety mood changes for me)
I'm sure its some sort of foriegn invader doing this, like a bacteria or parasite of some sort. How else can a perfectly healthy body and mind turn on itself so suddenly in such a strange manner??
Does anyone else have symptoms of their neck swelling? It feels like its filling up like a balloon, very uncomfortable, and it hurts to bend it back. It usually kicks in towards the evening and night time...
Thank-You
Posts: 170 | From Vancouver | Registered: Apr 2006
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posted
Same symptoms including my neck - I also get the same feeling in my head. At one time docs thought it was MS with moderate degeneration in my neck. I've been in treatment for Lyme for 3 1/2 years. I've also been diagnosed with 'some yet underdetermined degenerative neurological disease'. One doctor said I had ALS - but that was 10 years ago and that diagnosis was wrong....
As for my neck, when it gets like that I have trouble bending it to the side the swelling is where the back of my neck meets the base of my skull. Lovely side effect...
What treatment are you on now?
Posts: 298 | From Maine | Registered: Jan 2004
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
I feel for you Jon.
I think I would probably feel that same as you if I didn't see an EM on my wrist and have a positive FISH test for Babesia from IGeneX. However, I do have negative lyme tests.
In the very beginning of my treatment (and before) I had a severe stiff neck, I could not turn it to the right nor could I tilt it up to look into mirror while brushing my teeth.
The only other illness I can think of and I am not a doctor, just a lyme patient would be yeast, mercury toxcitiy, food allergies and eating or drinking Equal can cause lyme like illness too.
I hope you have a LLMD would can help you with this, they can rule out other illnesses.
Posts: 6638 | From Michigan | Registered: Jun 2001
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Gopats: I was on antibiotics and mepron for around 6 months. I went downhill from the moment I started! I ended up dropping out of university recently, I figure i'll go back when I'm healthy again
NOw i'm on a herbal protocol, and I think i'll throw in some olive leaf extract and Samento.
I for sure got herxiemer responses from Anti-biotics, I felt like crap!!!! Since stopping I immediately felt 30-40 percent better. IS this a good sign that one has LD?
Cheers. Posts: 170 | From Vancouver | Registered: Apr 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Jon: [QB] I'm still on my path to discover what's truely wrong with me. I want to be 100% certain. Positive babs test, negative Lyme test. 1.5 years ill.
When you say "negative lyme test," what does that mean?
Was this a western blot through IGeneX?
Because you can have REALLY significant positive bands and still have a "negative" result.
It's unlikely you have babesia without having lyme, especially from your symptoms.
Please let us know what "negative" lyme test you're describing, and if IGeneX, post your bands.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
other illnesses that give lyme-like symptoms are the various co-infections (babesia, bartonella, etc.) Have you discussed these possibilities with your LLMD?
Posts: 991 | From California | Registered: Feb 2006
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posted
Yeah I understand that, I just find it odd that Igenex wouldn't say positive if that wase the case.
Anyways here are the bands that tested positive:
IGM
23-25 IND 30 + 39 IND 45 + 66 ++ 93 +
IGG
39 IND 41 +
THank-YOu Posts: 170 | From Vancouver | Registered: Apr 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Jon: Anyways here are the bands that tested positive:
IGM 23-25 IND 30 + 39 IND 45 + 66 ++ 93 +
IGG 39 IND 41 +
The significant antibodies for lyme are 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
With symptoms consistent with lyme (which you've described), I cannot imagine any lyme literate doctor NOT thinking you have lyme based on these results.
While certain bands are needed to test "lab positive," you have plenty of lyme-specific bands with positive -- not equivocal! -- findings.
If it were me, I would stop thinking along the lines of a different diagnosis based on these test results.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Jon: Your symptoms are so generic and so common that fit with a lot of disorders. For instance, just to rule out, delayed reactions to many drugs cause those symptoms weeks or months after taking them. Cipro and levaquin, for instance, cause all your symptoms in many people, and last for months or years after taking them. In many cases the symptoms start well after ending the treatment. Many other drugs (antimalarials, clhoroquine, hydroxicloroquine, some modifiers of the inmune response, anticancer, .....) also have the potential to do this. And some toxics used for hobbies or at some jobs.
Posts: 94 | From canada | Registered: Nov 2006
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I do not believe I have syrnix, I do have alot of pain and feelings of swelling in my neck, but it fluctuates so much. Some hours of the day I can do yoga and go to the gym, and other hours the slightest movement hurts and my neck feels like its swelling. ALso I don't have much of the other symptoms that go with this.
The bands you mentioned Michelle, are they ONLY from the Boreillus Bacteria? Can other bacteria or substances cause them to create a positive reading, or can it only be positive from a borielus antibody?
I try and stay away from Television shows, especially HOUSE. However, I can never go without an episoide of Seinfeld.
THanks again.
Posts: 170 | From Vancouver | Registered: Apr 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
The bands mentioned are specific. 31, 34, 39 are very specific. I would agree that you need an LLMD to proceed with more treatment.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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geniveve
Unregistered
posted
i had negative igg, negative igm, negative coinfections from igenex. i only had one plus at 39 and 41.
the first doctor i went to told me i was critically ill, would be in a wheelchair within six months and maybe a couple of years to live!!! he scared the pee out of me!!! i left his office completely devastated......
he also said those with no-low scores are the sickest.
could have fooled me... that was 2 years ago. i got another doctor.....
i just don't have much faith in all these tests lately........
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Jon:
The bands you mentioned Michelle, are they ONLY from the Boreillus Bacteria? Can other bacteria or substances cause them to create a positive reading, or can it only be positive from a borielus antibody?
THanks again.
Band 41 cross-reacts. (Severe gum disease can cause it.) Syphllis can cause a positive test. Otherwise, there is mixed opinion on whether the other bands mentioned cross-react. The chances are quite low, especially with several bands. Here is IGenex' disclaimer, from their website:
"When the IgM ELISA is equivocal or positive, the IgM Western blot must be performed. In addition, because the literature suggests that rheumatoid conditions may lead to false positive IgM antibody responses, an ANA/DNA/rheumatoid factor screen may be ordered to rule out false positive reactions. Patients testing positive with serologic tests for syphilis may also test positive for the Lyme antibody tests."
______________________________
ILADS says:
"Furthermore, although a majority (89%) of patients with the EM rash developed IgG antibodies by Western blot sometime during disease, only 22% were positive by the criteria of the CDC/ASPHLD.4 The Engstrom et al. study did not use the IgG blot criteria of the CDC/ASPHLD.2
They found that 2 of 5 bands gave them a specificity of 93 to 96% and a sensitivity of 100% in the 70% of patients that produced antibody. This could imply an even lower sensitivity would be obtained had the more stringent CDC/ASPHLD criteria been used as a guideline for laboratory screening.
The CDC/ASPHLD criteria for a positive IgM Western blot include the 23-25 kDa (OspC), the 39 kDa and the 41 kDa, but overlook the 31 kDa (OspA) and the 34 kDa (OspB).1,10 Yet the CDC reported a specificity of 95% for the IgM Western blot, based on several hundred negative controls. Engstrom et al. reported specificities of their IgM Western blot to be between 92 and 94%.2 Some studies have suggested that the IFA and ELISA IgM assays may cross-react with ANA, EBV and other spirochetal infections,11 while other studies did not observe this with either IFA or Western blot.9,12Posts: 3193 | From Northern California | Registered: Apr 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Jon--
The tests for lyme - babs - bart- are Very Poor at best--
Too many things can Sque the results--
I had a Igenix tests done and my results where IND-(indeterminet)
Zero doubt I have both Lyme and Babs--
I had Lyme Bullseye and picture perfect symtoms match-- and I am now much better--
I did get sicker threw treatment-- Perty sure there is no way around getting sicker (Herx)
If you drink Lots of water the herx effects can be less---Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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