posted
Well, after an anxious couple of weeks, I got my results back from IGeneX. Negative by both CDC and IGeneX standards:
IgM Western blot - all negative except IND on 23-25, 39, and 41.
IgG Western blot - negative on 12, 22, 30, 34, 45, 66, 73, 83-93. IND on 23-25, 31, 39. + on 28 and 58. ++ on 41.
B. microti, IgM: negative B. microti, IgG: negative Babesia FISH (RNA): negative
Human Monocytic IgM: negative Human Monocytic IgG: negative
B. henselae IgM: negative B. henselae IgG: negative
I appreciate all the advice y'all have given me the last couple months, but it sure looks to me like I'm barking up the wrong tree here and it isn't lyme.
Symptoms: All over muscle weakness, severe hip joint pain, muscle pain (that moves around), muscle twitches and spasms, feeling of internal "vibrations" or shaking (but not visible). Sore, aching throat that comes and goes.
I've been on 400mg daily of doxycyline since 10/13. I'm wondering if I should even bother to continue it. LLMD said yes, but even she seemed at a loss over test results.
I have a neurologist appt coming up for an EMG and a nerve conduction velocity test.
At a loss of where to turn next and feeling pretty bummed out over it.
Thanks for letting me whine.
-------------------- Susan T. Posts: 28 | From Austin, TX | Registered: Oct 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey look Stiner,
Nobody wants you to have this disease....no one wants it either.
Glad your test results were negative for lyme.
However...If your EMG(which you're gonna love) comes back negative and your NCV test is negative and all other tests show negative or normal.
You may want to try another western blot>
Unfortunately there are a lot of false negatives for one reason or another.
Hey......just a thought!
Good luck and God Bless......zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm sorry you are feeling down.
There are many proven false negative's for a lot of reasons. There have been many discussions on this forum about that and there is a ton of info here and on other websites about that.
Negative tests do not mean that you don't have lyme. Most people who have had lyme for any length of time have a depressed immune system. Current tests rely on your immune system to produce antibodies, something that may not happen with a depressed immune system.
Only an LLMD can determine if you have lyme disease or co-infections. Often, use of abx can sero-convert WB from neg to positive. Co-infections are just as hard to test for. For instance, my LLMD say's that babesia lives inside the cell. This makes current tests very unreliable.
If you haven't already, you need to be fully evaluated by an LLMD. If you go to a good one and it's not lyme, they will tell you and in fact they may be able to point you in the right direction of a correct diagnosis. You may need an empirical trial of treatment to see if it is lyme or some other infectious illness.
I'm not a doctor but those are some thoughts that may be of use to you. I'm sure others will come along with more info.
Hang in there and keep looking for help. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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I do not want you to have Lyme either, but since when has the diagnosis of Lyme been about a postive Western Blot??-----even the CDC says that a Lyme diagnostic test should be used only as a "supportive" marker for diagnosis. Lyme is a CLINICAL diagnosis.
You have IND on some pretty important bands, namely 31 and 39 (among others). If you read your IgeneX results carefully they state that even having an IND on one double starred band(**) is of clinical significance.
Too much emphasis is put on a postive result on this VERY flawed test. More importantly, have you had any reaction to the doxy---do you feel better, or have you had any herxheimer-like reactions to it?
Clearly, I do not know what is ailing you, but I would be careful of a LLMD who relies only on a CDC postive test--doesn't sound too Lyme literate to me.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
ditto with what sjourner said
I don't know what's ailing you and am not a doctor but lyme is a clinical diagnosis and I would also be skepical about any LLMD who goes by the CDC guidelines.
With this in mind I thought you should read the this recent thread:
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
I have all the symptoms you mentioned. Also, no positive only indeterminate tests. I know I have lyme ..... I was healthy, had a tick bite .... very sick 2 months later with the symptoms (and more) that you mention.
Lyme is a clinical diagnosis. If your doc is relying on a positive test they are not an LLMD. You need to find one.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
My dear Stiner!
Are you sure you have an LLMD??
Because you said your LLMD was "at a loss" over your test results??
Anyone who has an equivocal or 'indeterminate' finding at Bands 23-25 and Band 39, with the ton of symptoms you have, probably has lyme.
A true LLMD would not be "at a loss" over findings like that. Those are lyme-specific bands. Band 41 shows up early but is often positive in people without lyme. However, you'd have a tough time explaining away the other bands.
You need either a different LLMD, or more patience, my dear.
Your body is probably just not producing antibodies.
Having been on doxy for a while, if you stopped antibiotics for a couple weeks and did another Western Blot IgM, I bet those indeterminates would turn real positive.
Please don't toss your test results. Either you or your LLMD is just not interpreting them correctly. Is this LLMD an ILADS member?
You do NOT have a negative Western blot by any means!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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quote:Originally posted by Michelle M: My dear Stiner!
Are you sure you have an LLMD??
Because you said your LLMD was "at a loss" over your test results??
Anyone who has an equivocal or 'indeterminate' finding at Bands 23-25 and Band 39, with the ton of symptoms you have, probably has lyme.
A true LLMD would not be "at a loss" over findings like that. Those are lyme-specific bands. Band 41 shows up early but is often positive in people without lyme. However, you'd have a tough time explaining away the other bands.
You need either a different LLMD, or more patience, my dear.
"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."
PLEASE, PLEASE do a trial run of antibiotics. Then do the test again in a few months. I think you'll find many more bands showing up.
Your body's immune system is probably very suppressed from the Lyme and is unable to register a strong response.
Sometimes the sickest people are those with "negative" tests. My test was CDC negative, but I KNOW I have it.
I had a great response to abx and am now doing GREAT! Do you want GREAT!?? Then go for it! ============================================
Also from the above link:
"Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Y'all have given me more to think about. Thank you.
Several of you expressed some doubts about the expertise of my LLMD, which I share. I'm learning that trying to find a true LLMD in TX is like looking for a needle in a haystack (but that's another post!).
So I just need to "buck-up" and continue on.
zman, yeah, I'm really looking forward to that EMG. NOT!
Michelle, patience is something I continue to work on! Don't we all?
Thanks!
-------------------- Susan T. Posts: 28 | From Austin, TX | Registered: Oct 2006
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posted
Have you checked out Wilson's Syndrome? I think many people with other illnesses benefit from being treated for Wilson's. PM me if you can't find the symptoms on the internet and I can send you a link to a page on a llmd's web page. It's in the paperwork all new paitents are asked to fill out.
Hang in there! Keep looking for answers!
Posts: 242 | From Mississippi | Registered: Oct 2006
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The lyme expert Dr. P testified at dr. j's hearing that he has seen people with documented bullseye rash, bells paulsey and all 7000 other symptoms who have completely negative tests...from igenex WB!
If your symptoms tend to get worse on abx, don't give up on lyme diagnosis...
In fact, if you continue to be sick for a long time, with mulitple system involvement, and moving pain---don't give up on lyme diagnosis...
People in treatment feel bad for along time before symptoms retreat...sometimes a whole year.
Please stay on your doxy (pretend you have acne)...keep tracking your symptoms and most important study and trust your instincts, this is an evolving disease with few studies and massive ignorance and denial.
Stay with us if you need to talk or for support... Blessings, Kim
-------------------- We are spiritual beings on a human journey...
Really sick people often show only a weak antibody presence on these tests, while others who seem healthy but are infected light up nearly all the bands.
In my opinion they aren't the most useful tests for purposes other than getting insurance to pay for some of the meds, etc. In essence sick people whose immune response has weakened show up as negative, while those who are still keeping it fought off show up more positive.
It is your symptoms that are screaming Lyme. Challenging it with antibiotics as you are doing will give some good indications... but they don't work as good as we wish and it takes some time to tell.
You may have something else of course, but many of these 'other diagnosis' are just a label for symptoms and lead you nowhere. The only treatments are pain pills, wheelchairs, and steroids to further wreck your immune system.
Your LLMD may be a little wet behind the ears, but considering the grim circumstances one may be still better off with someone who is at least sincerely trying to help you than a doctor that sells wheelchairs on the side.
That is my opinion... go down the roads that appear to lead somewhere, not the ones marked 'dead end'.
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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Stiner....What you have is a dr not well-versed in reading WB's. It's a shame that this dr is the only one Texas has left.
I think this dr could get you well, provided you dont' have coinfections.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Lyme specific bands trumps number of bands positive every time. Everyone above is correct.
My WB only ever had lyme specific bands posiitve and then only sometimes. I was positive by PCR, DNA was found in my blood, so we knew I had it.
There are also several species of lyme bacteria, lab tests may or may not be sensitive to them.
Our llmd treats based on symptoms and uses testing to track the course of the various co-infections.
Have you been tested for them? The symptoms overlap those of lyme, so maybe in addition to lyme you could have co-infections.
While you are pondering and perhaps waiting for lab work, consider food sensitivities. Gluten intolerance accerbated my lyme symptoms, perhaps making it seem like I had lyme longer than I did. Wheat allergies/sensitivities are oftern delayed and subtle, fatigue, joint pain and inflammation are just some of the possibilities.
I didn't seem to have food issues before lyme, but do now. Maybe trying the elimination diet can identify a food sensitivity ot two. In the long run it is easier than lyme and will probably make the healing from lyme faster if you have already eliminated immune stressors.
Here are some of the most common sensitivies, wheat( rice, rye and oats too), corn, soy and or peanuts, and milk( a more immediate reaction usually). Stop eating the most likely one, wheat for a week or two and see what happens. If your symptoms change for better or worse, when you could be onto something. Continue down the list. It will take a couple of months. This is actually pretty fasinating stuff. I didn't think I had any wheat issues and did the diet to humor my llmd. He was right of course!
My health rapidly improved after doing a no wheat and low carb diet and eliminating ingesting as many chemical as possible. I had been on long term abx for lyme and 3 co-infections.
posted
Have you checked out Wilson's Syndrome? I think many people with other illnesses benefit from being treated for Wilson's. PM me if you can't find the symptoms on the internet and I can send you a link to a page on a llmd's web page. It's in the paperwork all new paitents are asked to fill out.
Hang in there! Keep looking for answers!
Posts: 242 | From Mississippi | Registered: Oct 2006
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posted
I too have all those muscle issues, and was originally dx with a neuromuscular disease (based on far less evidence for the NM condition than your negative WB for lyme!)
Kept telling the doctor that I think I was misdiagnosed because of symptoms other than those relating to the muscles, eg sore throats.
I was right.
To be fair, I imagine they ruled out systemic autoimmune conditions such as lupus?
Anyway, I'm posting to point out that if you have symptoms that are not only muscular, chances are that there is some kind of systemic condition going on, not just a muscular one.
Don't know if this is what you are fearing, but ALS patients generally have muscle issues only.
Good luck on the EMG. They aren't fun. Been there, done that too many times.
Please arrange for someone else to drive you home. Despite my normal EMG, my muscles were totally mush after the test.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Stiner
Negitive test results dont mean- Squat -
The WB test is Wildly Inaccurate- It should not even be used but its the only test that is avaiable now-Ouch
Lyme and co-infections have to be dioginosed by using -SYMPTOMS ONLY--
I had a -Picture Perfect- Lyme Bullseye Bruse on my leg-(Austin)
My WB tests results (IND) -- Igenx ---
I have (Had) Almost Every Symptom--
Got treated for lyme and Babs- now Im Much--Much - Better -
DONT Trust WB test results -- Im Serious- -- MANY things can sque the results --
Lyme is a clinical diagnosis.(By Symptoms Only)
I Sure would Continue to take the Doxi--
Hope this helps-- Jay --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Stiner,
I'm one of the newbies here as well and see my LLMD on Monday in regards to my Igenex testing.
Also, he's just gotten all my medical records of the past five years, since they were slow releasing them, but that's another story.
The reason I write, is that since my blood being drawn, I have taken a massive cram course through these boards and also a state lyme support group.
One thing that has been drilled into my head as to why you need a good LLMD is that tests, including Igenex can still come out negative, even though you still could have lyme.
Even more, my husband works with someone that only had two bands and is being treated for lyme. And many I talk to had NO bands.
I was given a web page by someone in my support group that if he's out there, I will give total credit to if he chooses to step forward. I'm uncomfortable name dropping.
But the link is "REASONS for a false negative" and these should also be taken into account by a true LLMD.
As other have said, there may be other reasons but I have your systoms plus many, many more of my own, so know this is a disease where sadly, we need to often be our own advocates in our healthcare.
I do hope you will stick around and keep us posted on your progress, atleast until you can say for sure that it is something else and not lyme since the symptoms still fit.
Perhaps I will be having to take my own advice on Monday. The best to you and the great support team that has written before me.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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"autoimmune" will be fixed once the infection is gone....just my biased opinion.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey Stiner....
Ya want some strait up honest skinny?
The Emg sucks and if it's lyme won't tell the neurologist squat as to why you have neuropathy...probably won't even show up as having neuropathy...then the neuro duck will think you're nuts.
Same with the spinal tap!
As far as MommaK is concerned...unless you have an accumulation of copper in various organs(brain,liver,kidney and cornea)and associated intestinal absorption of copper.
A pigmented ring(Kayser-Fleischer ring) at the outer margin of your cornea...I would seriously rule out Wilson's disease/syndrome.
Degenerative changes in the brain,cirrhosis of the liver,splenomegaly,tremor,muscle rigidity,involuntary movements,spastic contractures,psychic disturbances,dysphagia and progressive weakness and emaciation are also symptoms....
which may be closely related to lyme but would easily show up on blood tests for copper retention.
Thanks anyway Momma K!
Your choice...get stuck all over and have electricity shot into you like a frog....or stuck in the back only to find zilch...
or A blood and eye exam for copper....
Or retain and listen to a good llmd....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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quote:Originally posted by stiner: Thanks again everyone for all the great info. I'm continuing to take my doxycycline and have not ruled out lyme at this point.
Let us know when you herx!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I noticed you were on ABX only since 10/13. I assume you mean 10/13/06. I am not as knowledgable as most of those who have already responded but it seems to me that after only a few weeks of treatment, it might be too soon to expect any major improvement. My most recent Lyme tests were pretty similar to yours, but there is no doubt in my mind and my LLMD's that I was having a relapse based on the symptoms.
I had some of the same symptoms and while I did respond pretty fast for some of the symptoms (the ones I got the most recently) it took months for the others to go away. I too had a sore hip and it took quite a while for the ABX to work. I don't know anything about the dose of Doxy. I would ask your LLMD and others here whether that dose is enough to do the job. I am taking a whopping dose of Ceftan (a great deal higher than 400mg) but I don't know how these doses correspond.
Keep your hopes up. My own treatment is going along very well (I am one of the lucky ones I guess). You might also want to ask about the benefit of taking a spect scan just to see if there is a blood flow problem, if you are having neurological symptoms. Doesn't hurt a bit, and may be useful in seeing if you have any improvement after treatment.
If you and your LLMD think its Lyme, you might also ask about taking some supplements like Cat's Claw and Olive Leaf, which I am taking. Also, you might want to think about having some heavy metals tests to see if they could be depressing your immune system.
I am not an MD so don't take anything I say as any kind of medical advice, just passing along some thoughts and experiences from someone being treated for Lyme. Everyone is different and you need to do what works for you.
-------------------- Mark J. Wallin, Ph.D. Posts: 32 | From Holland, PA | Registered: Jul 2006
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