Post by Metta on Jun 20, 2005 17:09:26 GMT -5
Hi to all old & New friends, and fellow Sufferers of this "unknown"
For those of you who haven't read my many 'novels' I did post info under the section of 'States' under the post for Missouri, where I live, I am 'Me"----
I have been Very sick!
Spent 2003-2004 on abx's prescribed to me by the LLMD. But will Never be able to afford the Four hour trip, the LLMD's fee, lab fees, etc..again. I am on medicaid, and the LLMD does not take that. getting SSI is my only income, and not enough to survive on, luckily my grown son moved in to help with bills for this small apt we live in.
Kept having the reoccurring Herpes Zosters on my tailbone- spine area..(where the virus lives) and was sent by my 'medicaid physician' to Washington Universities Infectious disease dr's... I had already had the dx of the sores on that area over 20 years ago after being in a severe car accident, but the zosters were coming up Every two months, which is NOT suppose to happen! They would come during the time of this cycle when I would have the fibers exiting me.. I related this to the Dr's, even showing them the jar of fibers I have taken out of me, that 'bloomed' in to odd fungal growths.. even according to the Merck manual when there is a reoccurence of zosters it is usually caused by an invasive organism.. BUT, they did Not, and Don't seem to think this is important enough to identify.
blood work of course came back as Herpes Simplex 1 & 2. and positive for Epstein Barr. They put me on Valtrex, and that was all they have done!
Then I was sent to St.Louis Universities Rheumatology dept. and I now have a Cardiologist, cuz my left ventrical in enlarged- (Hypertrophied) at SLU they dx me with Now having LUPUS! My first result SM/RNP Antibody was High, in range is <1.00, and mine was 4.80, one month later it went up to 5.58. Same with the C-Reactive Protein, it was High, and my Sed-Rate was High! And there were Ketones in my urine?
I have had Three Echocardigrams in this past year, and in six months my left ventrical has enlarged, and now my right Atrial in enlarged too. Other tests done show I have a Hiatal Hernia, and the Gastroesophageal Junction is (Patulous) meaning it is standing open, or Spreading. Lung volume seems to be o.k. but I did do better after they administered the Bronchodilator.
I am on Zocor & 81mg aspirin for the High cholesterol levels, and after being on 40mgs of Zocor, and another test was done and my cholesterol went UP, the Cardiologist upped the dose to 80mgs. I am seeing the Cardio Dr. on Thursday to go over the last echo that was done at SLU, and showed the changes and enlarging of my heart.
Although the Rheumatologist said this is caused from the Lupus!
They put me on Plaquenil for the Lupus. I had EVERY side effect from it, it felt like what I went though while herxing on the ABX's for the "lyme-like" bacteria I had/have?
Both Wash.U Dr's and St.Louis U's Dr's do NOT believe my IGenex results! And SLU docs did a PCR for Borrelia Burgdorferi, and it came back as Neg. Of course I disputed this by saying I had been on all those abx's, and since the state of Missouri says we do NOT have Lyme disease here, I said "The PCR was for Bb, and this is a differant strain" The Rheum. dr. is a believer of Dr.Steere, so what does that tell you??
I have butted heads with them all of course, and my last appt. my daughter went with me, I brought this time the jar of fungus growing on the q-tips I used to swipe out my orafices. He being the head of rheumatology, and the Lupus Foundation told me that "Even identifying and treating the source of what is causing my immune system to work overtime will NOT stop the Lupus!"
I do NOT beleive that for one minute! This is now FOUR years I have been telling Dr's Everywhere, that something was in me! And the dx of Lupus is proof of it! They have all seen the fungus too! My God I was given the dx of Myiasis, and the flies that were I.D. were Fungus Gnats!! Duhhhh fungus gnats thrive in FUNGUS!!
The Rheum. dr. told me to go back to infectious disease dr's! The infectious disease Dr's told me "It should be up to the Rheum. Dr. to find the cause of Lupus!" So here I am, being sent in that circle AGAIN!!!
I have made my calls to all health depts. CDC, and played this game over & over again!
Even telling the Rheum. Dr. and he being the Head of the Lupus Foundation should have known that according to our Missouri statute 192.729, patients dx with Lupus are to be reported to the Dept. of Health & Senior Services. He didn't believe me, so I sent him the statute.. go to your states statutes, look for the section under dept. of health, and see what it says as for reporting diseases!
I am so sorry I have not been on here before this, even with being close friends with Patti, and Kerry, I just have Not wanted to get involved with another forum, although NUSPA was how I found Mary with Morgellons, and all of you old friends! I just got so burnt out with researching, and have gone round & round with what this may be in US! But the other reason is, it is too upsetting to see how many more are sick like this too! We all KNOW this is an Epeidemic! And even with all the calls, e-mails, and Many Dr's we all have seen, NO-ONE is doing anything about this! I have also been way too sick so many days that I am not even able to use my hands, focus my eye's, or brain on reading & writing.
BUT.. I have Never given up on looking for the answers to this!
And I KNOW that the "fibers" are the Key to this disease for me!
Yet NO-ONE seems to want to identify it?
I certainly have had many very Ignorant Dr's, but I also think there is something odd to this too! Of course I have read all the theories to this..ie;chemtrails etc.. I do live right next to Boeing, and Lambert Airport, and my skies are filled with the chemtrails!
Everyone in my life is sick too!
Once rare, now all of a sudden everyone I know, see, meet, and talk to have been dx with Autoimmune & connective tissue disease's!
And with the Unidentifiable lesions on them too!
I KNOW that something BIG & BAD came in to our lives!
I came on here to let the folks in Missouri know that the CDC is looking for people who have an "unknown rash" this also applies to other states I think?
It says to have your Dr. contact the CDC at dvbid@cdc.gov, or call 970-221-6400.
A fellow Lyme sufferer here in Missouri filed a petition with the DHSS asking to have the wording changed about Lyme disease in Mo. it is under consideration.
As some of you may recall, I have kept a journal off & on for several years about the cycle of this. It is still like clockwork, having the fibers exit my orafices, hair, skin, & nails. I have watched these fibers grow from using a 15X magnification, to now I can see them with 5X magnifying glass. They are fatter, and longer! I still see the floating 'entities' that look either like boomerangs, or like cobra's, they seem to come out or off me when I am around new people. I am NOT even gonna speculate as to what they are anymore...?? A Parasitical bacterial, fungus?? All of the above!
Well.. there is my novel, although I have had so much more happen, and things that were said by me, and Dr's. Same old B.S. runaround!
I have NEVER stopped searching for help in identifying this! And WON'T stop Until it is identified!
I have called several others state reps. signed petitions, and kept active, and will be glad to the same for any of you too!
I have said many times that I think all of these seperate groups, and other forums need to unite, and pool their info, and people together!
Fighting this Epidemic Disaster on my own has gotten me Nowhere, and I know that with all of us united together we would have a better chance of being heard!
Anytime anyone wants to do this, let me know.
I have never stopped thinking of all of you, and missed you all!
I will try and stay in touch!
Peace & Love to all!
Metta
For those of you who haven't read my many 'novels' I did post info under the section of 'States' under the post for Missouri, where I live, I am 'Me"----
I have been Very sick!
Spent 2003-2004 on abx's prescribed to me by the LLMD. But will Never be able to afford the Four hour trip, the LLMD's fee, lab fees, etc..again. I am on medicaid, and the LLMD does not take that. getting SSI is my only income, and not enough to survive on, luckily my grown son moved in to help with bills for this small apt we live in.
Kept having the reoccurring Herpes Zosters on my tailbone- spine area..(where the virus lives) and was sent by my 'medicaid physician' to Washington Universities Infectious disease dr's... I had already had the dx of the sores on that area over 20 years ago after being in a severe car accident, but the zosters were coming up Every two months, which is NOT suppose to happen! They would come during the time of this cycle when I would have the fibers exiting me.. I related this to the Dr's, even showing them the jar of fibers I have taken out of me, that 'bloomed' in to odd fungal growths.. even according to the Merck manual when there is a reoccurence of zosters it is usually caused by an invasive organism.. BUT, they did Not, and Don't seem to think this is important enough to identify.
blood work of course came back as Herpes Simplex 1 & 2. and positive for Epstein Barr. They put me on Valtrex, and that was all they have done!
Then I was sent to St.Louis Universities Rheumatology dept. and I now have a Cardiologist, cuz my left ventrical in enlarged- (Hypertrophied) at SLU they dx me with Now having LUPUS! My first result SM/RNP Antibody was High, in range is <1.00, and mine was 4.80, one month later it went up to 5.58. Same with the C-Reactive Protein, it was High, and my Sed-Rate was High! And there were Ketones in my urine?
I have had Three Echocardigrams in this past year, and in six months my left ventrical has enlarged, and now my right Atrial in enlarged too. Other tests done show I have a Hiatal Hernia, and the Gastroesophageal Junction is (Patulous) meaning it is standing open, or Spreading. Lung volume seems to be o.k. but I did do better after they administered the Bronchodilator.
I am on Zocor & 81mg aspirin for the High cholesterol levels, and after being on 40mgs of Zocor, and another test was done and my cholesterol went UP, the Cardiologist upped the dose to 80mgs. I am seeing the Cardio Dr. on Thursday to go over the last echo that was done at SLU, and showed the changes and enlarging of my heart.
Although the Rheumatologist said this is caused from the Lupus!
They put me on Plaquenil for the Lupus. I had EVERY side effect from it, it felt like what I went though while herxing on the ABX's for the "lyme-like" bacteria I had/have?
Both Wash.U Dr's and St.Louis U's Dr's do NOT believe my IGenex results! And SLU docs did a PCR for Borrelia Burgdorferi, and it came back as Neg. Of course I disputed this by saying I had been on all those abx's, and since the state of Missouri says we do NOT have Lyme disease here, I said "The PCR was for Bb, and this is a differant strain" The Rheum. dr. is a believer of Dr.Steere, so what does that tell you??
I have butted heads with them all of course, and my last appt. my daughter went with me, I brought this time the jar of fungus growing on the q-tips I used to swipe out my orafices. He being the head of rheumatology, and the Lupus Foundation told me that "Even identifying and treating the source of what is causing my immune system to work overtime will NOT stop the Lupus!"
I do NOT beleive that for one minute! This is now FOUR years I have been telling Dr's Everywhere, that something was in me! And the dx of Lupus is proof of it! They have all seen the fungus too! My God I was given the dx of Myiasis, and the flies that were I.D. were Fungus Gnats!! Duhhhh fungus gnats thrive in FUNGUS!!
The Rheum. dr. told me to go back to infectious disease dr's! The infectious disease Dr's told me "It should be up to the Rheum. Dr. to find the cause of Lupus!" So here I am, being sent in that circle AGAIN!!!
I have made my calls to all health depts. CDC, and played this game over & over again!
Even telling the Rheum. Dr. and he being the Head of the Lupus Foundation should have known that according to our Missouri statute 192.729, patients dx with Lupus are to be reported to the Dept. of Health & Senior Services. He didn't believe me, so I sent him the statute.. go to your states statutes, look for the section under dept. of health, and see what it says as for reporting diseases!
I am so sorry I have not been on here before this, even with being close friends with Patti, and Kerry, I just have Not wanted to get involved with another forum, although NUSPA was how I found Mary with Morgellons, and all of you old friends! I just got so burnt out with researching, and have gone round & round with what this may be in US! But the other reason is, it is too upsetting to see how many more are sick like this too! We all KNOW this is an Epeidemic! And even with all the calls, e-mails, and Many Dr's we all have seen, NO-ONE is doing anything about this! I have also been way too sick so many days that I am not even able to use my hands, focus my eye's, or brain on reading & writing.
BUT.. I have Never given up on looking for the answers to this!
And I KNOW that the "fibers" are the Key to this disease for me!
Yet NO-ONE seems to want to identify it?
I certainly have had many very Ignorant Dr's, but I also think there is something odd to this too! Of course I have read all the theories to this..ie;chemtrails etc.. I do live right next to Boeing, and Lambert Airport, and my skies are filled with the chemtrails!
Everyone in my life is sick too!
Once rare, now all of a sudden everyone I know, see, meet, and talk to have been dx with Autoimmune & connective tissue disease's!
And with the Unidentifiable lesions on them too!
I KNOW that something BIG & BAD came in to our lives!
I came on here to let the folks in Missouri know that the CDC is looking for people who have an "unknown rash" this also applies to other states I think?
It says to have your Dr. contact the CDC at dvbid@cdc.gov, or call 970-221-6400.
A fellow Lyme sufferer here in Missouri filed a petition with the DHSS asking to have the wording changed about Lyme disease in Mo. it is under consideration.
As some of you may recall, I have kept a journal off & on for several years about the cycle of this. It is still like clockwork, having the fibers exit my orafices, hair, skin, & nails. I have watched these fibers grow from using a 15X magnification, to now I can see them with 5X magnifying glass. They are fatter, and longer! I still see the floating 'entities' that look either like boomerangs, or like cobra's, they seem to come out or off me when I am around new people. I am NOT even gonna speculate as to what they are anymore...?? A Parasitical bacterial, fungus?? All of the above!
Well.. there is my novel, although I have had so much more happen, and things that were said by me, and Dr's. Same old B.S. runaround!
I have NEVER stopped searching for help in identifying this! And WON'T stop Until it is identified!
I have called several others state reps. signed petitions, and kept active, and will be glad to the same for any of you too!
I have said many times that I think all of these seperate groups, and other forums need to unite, and pool their info, and people together!
Fighting this Epidemic Disaster on my own has gotten me Nowhere, and I know that with all of us united together we would have a better chance of being heard!
Anytime anyone wants to do this, let me know.
I have never stopped thinking of all of you, and missed you all!
I will try and stay in touch!
Peace & Love to all!
Metta