I have been diagnosed with lyme disease recently. The Igenex result is "Indeterminate". I tested negative for the multiplex B. Burgdorgeri serum/whole blood. My LLMD says she thinks it's lyme, but what if it is not?
I have this huge doubt that it's lyme disease. What if it is something else all along? I been sick for almost two years now. I have orthostatic Intolerance, what if all my symptoms from that?
My symptoms are: lightheadedness fast heart rate joint pain/muscle pain eye pains/ headache ear/throat pain. weak/ tired pelvic pain/ stomach pains. nauseous/ chest pains. TMJ .. .. etc.
Can it be something else?
Posted by sixgoofykids (Member # 11141) on :
Do you have a copy of your IGeneX western blot?
Something has to be causing the orthostatic intolerance, right? Could be that Lyme is causing it.
My daughter's test was indeterminate. We did a trial run of abx based on her symptoms, which is how we confirmed her diagnosis. She responded well.
She had fewer symptoms than you do .... her daily headaches are gone.
Posted by jessrunner (Member # 27672) on :
By reacted, do you mean those bands were positive?
Posted by kidsgotlyme (Member # 23691) on :
Well....from the little bit I read, orthostatic Intolerance can be caused by a cardiac problem, and we know the lyme can cause heart issues.
The question I would be asking myself would be..is the OI symptoms actually being caused by lyme??
Also, what other conditions, besides lyme, could be causing ALL of your symptoms?
Lyme causes all of the symptoms that you have.
Does that mean that it couldn't be something else?? No, I guess anything is possible. But you probably aren't going to find an answer that fits your symptoms any more than lyme.
It's hard to accept the reality of having LD because so much baggage comes along with having it. I hope that you find the answers you are looking for.
Posted by jessrunner (Member # 27672) on :
Yes, the bands I listed above are positive.
Posted by sixgoofykids (Member # 11141) on :
That's not an indeterminate test!!!! That is a positive test!! If you have those symptoms and that test, I'd agree with your LLMD, you've got Lyme.
Posted by jessrunner (Member # 27672) on :
Okay Thank you.
Posted by sixgoofykids (Member # 11141) on :
The good news is, you can get better with treatment. You know what you have, so you can be treated for it. Posted by jessrunner (Member # 27672) on :
I am afraid I go through treatment and I don't improve at all...
Posted by Lymetoo (Member # 743) on :
PS... the last link contains info on POTS and NMH.
Posted by beths (Member # 18864) on :
I had orthostatic intolerance..actually POTS, as well as all the symptoms you listed. It totally went away after I treated my lyme, babs and bart!
Posted by arkiehinny (Member # 26546) on :
Your test was a lot more positive than mine, for sure. I only had 1 positive band & 1 IND on IgM; then on IgG bands 41,45, 58 were positive, with 31 IND.
Yet I'm treating anyway, based on my symptoms. Is it possible I don't have Lyme? Yes, it's possible; but not PROBABLE.
As evidenced by: Herxheimer reaction during intial first phase of oral Doxy; joint pain, confustion, delusions, sleeplessness, muscle pain, high anxiety, depression, exhaustion, lethargic, weak, brain fog.
So you see, the test aren't the sole indicator of it. It's gotta be based on symptoms plus test. Remember, INDeterminate means "weak positive".
Posted by jessrunner (Member # 27672) on :
Oh I thought Indeterminate meant unknown or undetermined.
Posted by LSG Scott (Member # 21624) on :
you should get a spec scan done and a cd57 to help confirm
Posted by Keebler (Member # 12673) on :
- Your Igenex IgM was positive according to a recent post of yours. Are you thinking that since the CDC has different criteria that this is just a bad dream?
I wish it were and that it could all be over soon. But, it appears as if you do have lyme.
Putting all this in one post, you say:
* sick for almost two years now.
* orthostatic Intolerance (which is a symptom of lyme)
Now, it may be more than lyme, but I would trust your LLMD here if that LLMD has successfully treated others. If that LLMD is ILADS-educated, you should be in good hands.
You should also be assessed for coinfections and nutritional deficiencies. I am sure your LLMD considered that in the clinical exam and will continue to assess the possibility.
Avoid ALL fake foods, alcohol, etc. Take care of yourself.
Rather than be afraid of treatment not working, the real fear would be from denying treatment out of wishing it were not so.
Understandable that you'd want this to just disappear. Facing it head on takes a lot of courage.
Does your LLMD have a good reputation? Is she ILADS-educated?
With treatment, many get better. Without it, not much chance. You have some options but it is important to face this with courage and commitment. I do hope your treatment path comes together easily for you.
If you want to know all the treatment options and support methods, discuss those with your LLMD. Talk to those in your local lyme support group. -
Posted by Keebler (Member # 12673) on :
"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." (end quote)
=========================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation. . . .
". . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . ."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results. . . .
- Full article at link above, containing MUCH more detailed information. -
Posted by Keebler (Member # 12673) on :
- How to start taking care of yourself? I do hope you will continue with your LLMD or another good ILADS-educated LLMD. Of course, there may be co-diagnoses but it sure looks like lyme could be causing many, if not all, of your symptoms.
In addition to your LLMD's advice, be sure to look over the self-care section here so that you have the best chance for success: ------------------------------
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
===========================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
- Good luck. This is a lot to take in. It's natural to feel a mix of strong emotions, so take care of yourself, okay ? -
Posted by Lymetoo (Member # 743) on :
jess... this is the link I was referring to in the PM.
Posted by jessrunner (Member # 27672) on :
Thanks everybody.
Posted by METALLlC BLUE (Member # 6628) on :
I'll get right to the point. It's definitely Lyme Disease.
You may wish to investigate or question whether you have more than one medical condition, but one of them, if only one, is absolutely Lyme.
Of course we could always play the whole "Well maybe they mixed up your test, or it's a false positive."
I'm sure the IDSA would enjoy that, but to me? That's absurd.
See how you react to initial treatment. If you improve or notice a strong worsening of symptoms early in treatment, it's Lyme.
If testing like Brain SPECT scanning, CD57, or other blood testing supports the diagnosis, then that just reinforces it. An even stronger piece of evidence is whether a co-infection shows up on traditional testing, like Rocky Mountain, Ehrlicia, etc.
Posted by jessrunner (Member # 27672) on :
Metallic Blue,
Thank you. I will see how I will do on treatment. CD57 was in a good range. Not too low and not too high. It was 120.
Posted by bcb1200 (Member # 25745) on :
200 is normal. So you are low...but not that low. I was 84. That is good news.
Really bad, chronic lyme is <60.
Suspect you also have co-infections.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by jessrunner: Metallic Blue,
Thank you. I will see how I will do on treatment. CD57 was in a good range. Not too low and not too high. It was 120.
120 is low. It's not "horrible" but it's abnormal in context of Chronic Lyme Disease. 200 + is considered normal for patients with Lyme Disease. Anything below that usually results in relapse based on reports from physicians.
The CD57, in my opinion, is a very weak test and doesn't mean much by itself for most people. It's just one more piece of evidence supporting your diagnosis.
Look for co-infections via your local lab. Babesia, Bartonella, Rocky Mountain Spotted Fever, Ehrlicia, etc.
Posted by jessrunner (Member # 27672) on :
Wow, People have been telling me that 120 CD57 is very high, and correction my CD57 is actually 130, I just checked.
Posted by Keebler (Member # 12673) on :
- Well, still, the CD57 is not a test I would bet my life upon. My LL ND said it's just one piece to consider but NEVER one upon which to make a diagnosis.
Yes, all this can be shocking and very scary. Your Igenex test was positive. You have glaring symptoms.
Consult with an ILADS-educated LLMD about lyme treatment and getting assessed for possible coinfections. Please be aggressively proactive with this if you want to have any kind of life. This can get better. It may be a bumpy ride for a while but it can get better. You can have a chance, with action.
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