posted
My brother has had horrible eye pain, blurryiness, pressure and visual snowing since March.
To maka a long story short...he originally had tested Lyme + on April 9th but soon afterwards he found himself inpatient at Jefferson Hospital in Phili for severe headache.
He was told by the infectious disease doctors in the hospital that he does not have Lyme disease.
The Iginex IGM Western Blot band 41 was ++ band 39 was IND and band 83-93 was IND.
Well months and months later that included multiple trips to many specialists including the Wills Eye Institute, the Lyme Center in Princeton and recently 5 days spent at the Mayo clinic in Minnesota he continues to get mixed messages about his lyme diagnosis...
He also met with 2 LLMD who both wanted him to start on medication for as clinically he fit the mold of a Lyme Patient
His antibody test showed normal strength and his Babesia Fish was negative and subsueqent Repeat Wester blots are negative
Of course he was apprehnsive because his IGINEX results dont have enough red flags to confirm a definite diagnosis yet he has seen over 30 specialists who can find nothing wrong!!
BYW, the Mayo clinic recently gave him the diagnosis of an 'overreactive eye nerve" and prescriped Neurontin
His current LLMD, Dr I has started him on this regimen since last week when he returnd from the Mayo clinic......Bactrim 1600mg daily, Athithromax 750 mg daily , Amantadine 200mg daily, and he will start pulsing Tindamax 1000mg two weeks on and then two weeks off..............
IN conclusion He has been several different kinds of medication since last march. But due to the confusion of medical experts, he has not stayed on any one thing long enough to get the full effect and no hexing has every taken place and He has not had any relieve in his symptoms
.......he feels no better and is very fearful to start the next step which is having a medport placed in his chest and start iV therapy to treat chronic Lyme......he continues to verbalize that he does not have Lyme disease but all roads do seem to lead down that road
I dont have any answers but I and hoping and praying that someone out there can offer some advice or guidance
posted
My Igenex Western Blot came back very similar to that.
Considering my symptoms, my LLMD (who is very experienced at treating Lyme patients until they are better) had no doubt that I have Lyme disease.
I am not a doctor or medical person, so I couldn't say about his diagnosis, but it certainly sounds similar to other Lyme stories I have heard.
Unfortunately, many, if not most, Lyme patients have been through the experience of being told over and over by infectious disease doctors and the staff of "reputable" hospitals and clinics that they did not and could not have Lyme disease, even in the face of obvious and debilitating symptoms, a CDC positive Western blot, a proven tick bite and an initial bullseye rash.
Many Lyme patients get the bad symptoms, but not positive test, no rash (I never had one), and they don't even remember a tick bite (I did at least find my tick, so I suspected early on that I might have Lyme.)
I was completely astonished to learn how an entire class of patients, i.e., everyone with Lyme and other tick-borne diseases, has been systematically mistreated by the medical system.
I no longer trust the advice of any doctors on this matter who are not LLMDs.
You are not allowed to serve on a capital jury if you don't believe in the death penalty, because you would not be capable of voting either way--you could only vote no.
In the same way, a doctor who does not believe in the existence of chronic Lyme disease is never going to be able to tell you if you have it, how to fix it, or when you are cured.
When I started doxycycline for my Lyme, I still had a little doubt in my mind about whether I really had Lyme, but then I had a herx from it 3 days into my treatment, and that was enough evidence to convince me.
I would ignore the ID ducks--how is it that the specialists in infectious disease are the group of doctors who know the very least about our infectious disease?--and only take advice from an LLMD, preferably a member of ILADS with many years of experience treating Lyme patients until they get better.
At first my family advised me to call random doctors and ask them "Do you treat Lyme disease?" You can find some who will say yes.
What they really mean is, they will treat you for 3 weeks or a month, and then when you're not better, they will kick you out and tell you that's all they can do for you. Don't trust those either.
The best thing that explained the whole messy Lyme situation to me was the book "Cure Unknown" by Pamela Weintraub. I read it and then made my family read it.
The second best thing was the DVD, "Under Our Skin," so if your brother isn't up to reading, maybe he could watch that with you. It helps explain about why Lyme patients are misdiagnosed, mistreated and given the runaround, and includes interviews with a couple of good LLMDs and a lot of patients.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Sorry your brother is so ill!
Lyme Disease is a clinical diagnosis, and test are used to back up that diagnosis. Many of us start out with negative test; but as treatment continues more bands will show up positive. That is how it happened for me. Took me one year of treatment to get an IGM CDC positive.
Here we say......"Hold the Mayo"! Because no one has ever, nor ever will get a lyme diagnosis from that place.
Keep reading here and you will see that most ppl experience something very similar to what your brother has been through. It took most of us years to get a proper diagnosis of LD.
I wish your brother the best of luck!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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