Well, after 15yrs of being misdiagnosed I finally have my results.
First of all my doc sat me down and went through all my lab results with me and EXPLAINED them all to me. Explained what each and every one of them meant and what she liked them to be. Or where they should be.
According to her IgeneX is more conservative on their testing for Lyme than the CDC. My test for Lyme was positive by IgeneX but Negative by CDC.
IGENEX IGM RESULT POSITIVE CDC / NYS RESULT NEGATIVE
****PRESENCE OF ONLY ONE DOULBE STARRED BAND OR INDETERMINATE DOUBLE STARRED BANDS IN A NEGATIVE REPORT MAY INDICATE CLINICAL SIGNIFICANCE.**** THEREFORE , WE RECOMMEND TESTING WITH ANOTHER METHOD AND / OR RETEST IN 4-6 WEEKS.
My doctor said the the IND ones were the ones that they were indetermined on. She also said that my Lyme has gotten worse since the test the VA had ran in Feb.
I also was a high positive for Mycoplasma Pneumoniae. She said that is not from a recent infection. It is most likely from when I was in my apartment that was contaminated from mold.
Especially since I had Bronchitis. I know it was not that. It was Pneumoniae. The VA just labled me with Bronchitis! I had d*** Pluresy in my ribcage for crying out loud. They call it Pneumonitis which you can get from mold. The VA doesn't know squat!
At any rate that just solidifies my case against my apartment.
My T-3 was also extremely low. She said that I was using my reserve t-3. Even that was low. Probaly while in my apartment my body was so sick that it was using to much reserve because the active t-3 was shut down.
Basically my Adrenals had shut down as well. It was a bad situation all around being there. She put me on Zithromax. She said that my Imoglobulin is really good. So with antibotics that I should recover really well.
Also found out that my Human Growth Hormone was sitting at 68! When the normal range is 126-291
I always had a good immune system until all this happened to me. I kept my body in shape and was in the Army. So I tried to keep myself fit.
The good news is NO Babesea or Erilichia. Although I was not tested for Barts. So I am not sure on that. I am wondering if I should get checked for that or the other tick born disease that is carried in Europe.
I forgot to bring that copy I ran off. I will ask her about it. My next visit is by phone. Which is good because, 220mi one way is killer.
[ 12. July 2008, 12:20 AM: Message edited by: Nora DeBoard ]
Posted by Erica741 (Member # 15186) on :
I'm am fairly new to lyme (diagnosed in early May), but even I can tell you Igenex results are VERY positive!
Did your doctor put you only on zithromax? I've usually seen that lyme patients are put on at least 2 antibiotics. Is your doctor planning to add more abx at some point? With the lyme and the mycoplasma pneumoniae, you've got a lot of bacteria to kill!
Is she also treating your thyroid and other issues right away?
Diagnosis is the 1st step to recovery....congrats! :-)
Erica
Posted by disturbedme (Member # 12346) on :
Is your doc a LLMD?
I also think that zithromax alone is kind of odd...
Also, just because your Babs came back negative or Ehrlichiosis came back negative, doesn't mean you for sure don't have them. Both of those tests for me came back negative too, but I have the symptoms of them.
It really matters if you have the symptoms, not just the test results for them.
Posted by Nora DeBoard (Member # 15600) on :
I am picking up my Zithromax today. I have 3 rifills. I have an appointment by phone in Aug. so my rifills will not run out by then.
I am also on Armour Thyroid and Cortef. As of yesterday she wrote me a script for Darvocet for my pain because the T3's were not helping. I had such a horendous headache. Had for 2wks. She had the nurse give me a shot of Torodal. It didn't help though.
I took a Valuum she gave me at my first visit and a T3 when I got home so I could sleep. I was not taking my Cortef because it was a steroid. I was afraid of weight gain. I posted a question about it but got no reply.
She told me that is most likely the reason of my 2week headache. My thyroid was getting what it needed but not my Adrenals. Plus I was taking 4 Armour a day and NO Cortef. OOOPS!
She wrote me for scripts of :DHEA/Pregnenolone, Gamma Grow (since my growth horome is really LOW), Leuko Stim: to enhance the immune system including natural Killer Cell number and function.
Zithromax, Florinef (for low levels of corticosteroid hormones and neurally mediated hypotension and Prometrium.
The Herpesvirus 6 was also high. The one that causes cold and canker sores. Altough I have not had one in a long time. Candida was not real high. Said that my eating yogurt should keep it at bay.
I am not sure if any other antibiotics will be added. I am waiting to see what my lab results look like that Dr. S recomended for his screening of Bitoxins.
I had my PCP order them. Since my BIRS and VCS test were both Positive for Biotoxin Illness. The BIRS was 99.999% out of 100%. She will be forwarding all the info I have that is needed except my labs. Which I will fax to her as soon as I return home.
She is also going to write something for my Attorney stating the fact that my Lyme, and Immune system being the way it was made me extremely suseptible to the mold. That and it making extremely ILL. Especially for two years.
Also probably why I have the Mycoplasma. Pnuemoniea now. Along with the Stapholoccocus Aureuas(?) in my nose. I have a much stonger case now. Posted by groovy2 (Member # 6304) on :
Hi Nora
Mold can really make to these illness Much worse-
About a year ago it made a trip to el paso -Zero mold there-
My symptoms got better in a half a day -
was the first time in months that I did not have drenching night sweats -
I had Zero sweats for the 10 days I was there-
when I returned home the sweats started again-
So I ripped out my carpet in my house washed wall with Bleach Water - I also sprayed Bleech Under my house -
I painted as much of the walls- floor as I could -- Doing this Helped ALOT -
If you can not remove the carpet ect-
You can get a 3M brand face mask- Get the N 92 model -cost about $5 -
recently I looked for some N92 masks online but could not them -
So I got some 3M N95 at Home Depot $5-for 4 these are different than the N92 models- but I think they will still work-
I wear the mask around my house and when I sleep --
the 3M masks are comfortable and fit well- Much better than the cheap ones -Jay-
Posted by Erica741 (Member # 15186) on :
Nora, Are you sure it is Herpesvirus 6 that you have? I think is HSV1 that causes cold sores....
HHV-6 is defintely adifferent virus and is commonly high in CFS patients.
Yes, it is HHV-6. That is what was on my Lab report.
Posted by METALLlC BLUE (Member # 6628) on :
Valcyte for the virus, and Zithromax alone is worthless. Combine it with Minocycline and Plaquenil, and then you're onto something. Or perhaps Rifampin and Minocycline and Amantadine/Plaquenil.
That test is "Positive, positive, positive, positive. The CDC issue is such a technicallity in this situation that it's not even funny. You are dead end positive."
Posted by Nora DeBoard (Member # 15600) on :
Another issues is being 100% disabled from the VA and actually 100% Unemployable. So I am unable to work.
I have so MANY issues and so many ongoing appointmants I am unable to work. I have twice weekly 2hr therapy sessions as it is. That doesn't include any specialty appointments.
Or any regular PCP appointments. My doc appt. in Ft. Worth with my scripts was over $500 and they do not take Insurance. Not that I have any because I am 100% disabled and unemployable.
My four perscriptions I had to pick up today were over $250!!!! The d*** Zithromax generic brand cost me $193.88! I was flabergasted! If I have to pay that much every month that will be outragous!!!!
Especially when I could get it from the VA. But when they refuse to even acknowlege that I have it. That is not going to help me.
I was almost in tears having to hand over my visa to shell out that much! Knowing full well the VA could get that for me.
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