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Post by ruth on Jan 9, 2010 19:47:56 GMT -5
he didn't mention agro......
he said virus and lyme
i have a positive for lyme
so do i need to be tested for virus?
he said..........virus and lyme
so..........i ordered the kit.
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Post by Sidney on Jan 9, 2010 19:53:50 GMT -5
OK, Ruth....what did I miss? You ordered WHAT Kit?
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Post by ruth on Jan 9, 2010 22:27:12 GMT -5
www.vipdx.com/ordering test kits for blood analysis i think it was lilsissy that brought it to us.
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Post by bannanny on Jan 11, 2010 22:57:44 GMT -5
Well ok, I guess I was always hoping our results would all show the same thing anyway. It just makes you more tired, confused, angry and frustrated getting nowhere when you thought were gonna get somewhere.
I'm not sure what you mean either ruth. Is this kit for blood analysis actually a test for viruses? I sure wish we knew what exact kind of kit we all could use that would show us what we need to know. Maybe we'll figure it out somehow...
love you ~~ bannanny
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Post by Sidney on Jan 11, 2010 23:47:19 GMT -5
www.vipdx.com/ordering test kits for blood analysis i think it was lilsissy that brought it to us.
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Post by ruth on Jan 12, 2010 1:01:23 GMT -5
www.vipdx.com/click on price list (pdf) it will show you the tests you can have done. there are a lot of them plus medicare will cover the tests (looks like to me) i ordered a kit to take to my dr. so she can give me the paperwork to get the blood drawn. the company said there is a 6-8 week wait as they have too many people ordering the kit now. i am wondering if we will be all over the board with virus like we are with molds and bacterias. i know i have HPV........got it from a drummer in kentucky years ago.
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Post by ruth on Jan 12, 2010 1:08:44 GMT -5
here is a list of the tests, the price, and the cpt codes
CPT Codes ITEM DESCRIPTION PRICE CHLP Chlamydia Pneumoniae - Qualitative: 87486 250.00 CMCP Complete Chronic Fatigue Profile 795.00 CMCP:ELAS Elastase: 82657 45.00 CMCP:NKCP Natural Killer Cell Enumeration & Functional Assay (LU30) Profile: 86357 ($100); 86359 ($100); 82658 ($120) 320.00 CMCP:RNAA Rnase-L Activity Assay: 82657 ($150); 82664 ($45); 83912 ($25) 220.00 CMCP -LYEA CD4/CD8 Lymphocyte Enumeration Assay: CD3 , CD4-CD8 ratio 86360 ($110), CD19 Absolute 86355 ($100) 210.00 CMVD Cytomegalovirus -Qualitative 87496 200.00 CREDIT Credit 0.00
CYT1 Inflammatory Cytokine Profile 400.00 CYT1:GMCSF GM-CSF, circulating levels: 88185 44.38 CYT1:IFN gamma - Serum Interferon Gamma, circ levels: 88185 - Serum 44.38 CYT1:IL1 beta - Serum Interleukin 1 Beta: 88185 - Serum 44.38 CYT1:IL10 - Serum Interleukin 10, circulating levels: 88185 - Serum 44.38 CYT1:IL12p70 - Serum Interleukin 12, circulating levels: 88185 - Serum 44.38 CYT1:IL2 - Serum Interleukin 2, circulating levels: 88185 - Serum 44.38 CYT1:IL4 - Serum Interleukin 4, circulating levels: 88185 - Serum 44.38 CYT1:IL6 - Serum Interleukin 6, circulating levels: 88185 - Serum 44.38 CYT1:IL8 - Serum Interleukin 8, circulating levels: 88185 - Serum 44.38 CYT1:TNF alpha - Serum TNF alpha, circulating levels: 88184 - Serum 44.96
EBVD Epstein Barr Virus - Qualitative 87798 200.00 ELAS Elastase Inflammatory Marker: 82657 200.00 HHV6 Human Herpes Virus 6 - qualitative with A & B determination: 87532 325.00 HHV7 Human Herpes Virus 7 - qualitative: 87798 200.00 HHV8 Human Herpes Virus 8 - qualitative: 87798 200.00 HHVP Herpes Infection Profile 565.00 HHVP:CMV Cytomegalovirus - qualitative: 87496 78.00 HHVP:EBV Epstein Barr Virus - qualitative: 87798 78.00 HHVP:HHV6 Human Herpes Virus 6 with A & B determination - qualitative: 87532 x 2 ($87.50 x 2) 175.00 HHVP:HHV7 Human Herpes Virus 7 -qualitative: 87798 78.00 HHVP:HHV8 Human Herpes Virus 8 - qualitative: 87798 78.00 HHVP:VZVD Varicella Zoster - Qualitative 87798 78.00 HLP1: Heavy Metals Sensitivity Profile1 86353 Arsenic $25;86353 Copper $25;86353 Lead $25;86353 Platinum $25;86353 Thiomersal $25;86353 Palladium $25;86353 Mercury $25;86353 Gold $25;86353 Silver $25;86353;86353 Alum $25;Beryillium $25;86353 Nickel $25;86353 Org Mer $25;86353 Tin $25... 350.00 HLP2: Heavy Metals Sensitivity Profile2 86353 Chromium 3 $40; 86353 Selium $38.75; 86353 Uranium $38.75; 86353 Cadmium $38.75; 86353 Chromium 6 $38.75; 86353 Silicon $38.75; 86353 Cobalt $38.75; 86353 Manganese $38.75; 86353 Titanium $38.75 350.00 HTLV T-cell Lymphotrophic Virus Profile 300.00 HTLV:HTLV 1 T-cell Lymphotrophic Virus 1: 86687 125.00 HTLV:HTLV II T-cell Lymphotrophic Virus II: 86688 175.00
IMO1 Intestinal Dysbiosis Profile -Immunobilan Test: Klebsiella Pneumonia IgA - 86317 $14.29, Klebsiella Pneumonia IgM - 86317 $14.29; Proteus Mirabillis IgA - 86317 $14.29, Proteus Mirabillis IgM - 86317 $14.29; Citrobacter Koseri IgA -86317 $14.29, Citrob... 200.00 INSP Infection Screen Profile - Qualitative 495.00 INSP:CHLP Chlamydia Pneumoniae: 87486 100.00 INSP:MYFM Mycoplasma Fermentans: 87551 131.67 INSP:MYHM Mycoplasma Hominis: 87551 131.66 INSP:MYPN Mycoplasma Pneumoniae: 87581 131.67 LU30 Natural Killer Cell Functional Assay - Lytic Unit 30% (LU30): 82658 325.00 LYEA: Lymphocyte Enumeration Assay: CD4, CD8, CD4-CD8 ratio 86360 ($150), CD19, CD45, CD4/CD8/CD19 Absolute 86355 ($100) 250.00 LYME Lyme C6-B.burgdorferi ELISA Test (confirmatory by PCR) 87476 397.00
MCP1 Mini Chronic Fatigue Profile 475.00 MCP1:ELAS Elastase: 82657 45.00 MCP1:RNAA RNase Activity Assay: 82657 ($150); 82664 ($45); 83912 ($25) 220.00 MCP1: LYEA CD4/CD8 Lymphocyte Enumeration Assay: CD3 , CD4-CD8 ratio 86360 ($150), CD19 Absolute 86355 ($100) 210.00 MEDICARE Supplemental payment by patient 0.00
MYCP Mycoplasma Profile - Qualitative 395.00 MYCP:MYFM Mycoplasma Fermentans: 87551 131.67 MYCP:MYHM Mycoplasma Hominis: 87551 131.66 MYCP:MYPN Mycoplasma Pneumoniae: 87581 131.67 MyFM Mycoplasma Fermentans: 87551 200.00 MYPN Mycoplasma Pneumoniae: 87581 200.00
NKCP Natural Killer Cell NKCP Enumeration & Functional Assay: 86357 ($150); 86359 ($150); 82658 ($200) 500.00 NOAS Nitric Oxide Synthase Assay (82657) 200.00 OTHER Balance Due 0.00 OTHER:Cytokine - Spinal Fluid Cytokine Profile - Spinal Fluid 0.00 OTHER:Cytokine - Spinal Fluid:IFN gamma Spinal Fluid Interferon Gamma, circ levels: 88185 - Spinal Fluid 44.38 OTHER:Cytokine - Spinal Fluid:IL1 beta - Spinal Fluid Interleukin 1 beta: 88185 - Spinal Fluid 44.38 OTHER:Cytokine - Spinal Fluid:IL10 - Spinal Fluid Interleukin 10, circulating levels: 88185 - Spinal Fluid 44.38 OTHER:Cytokine - Spinal Fluid:IL12p70 - Spinal Fluid Interleukin 12, circulating levels: 88185 - Spinal Fluid 44.38 OTHER:Cytokine - Spinal Fluid:IL2 - Spinal Fluid Interleukin 2, circulating levels: 88185 - Spinal Fluid 44.38 OTHER:Cytokine - Spinal Fluid:IL4 - Spinal Fluid Interleukin 4, circulating levels: 88185 - Spinal Fluid 44.38 OTHER:Cytokine - Spinal Fluid:IL6 - Spinal Fluid Interleukin 6, circulating levels: 88185 - Spinal Fluid 44.38 OTHER:Cytokine - Spinal Fluid:IL8 - Spinal Fluid Interleukin 8, circulating levels: 88185 - Spinal Fluid 44.38 OTHER:Cytokine - Spinal Fluid:TNF alpha - Spinal Fluid TNF alpha, circulating levels: 88184 - Spinal Fluid 44.96 OTHER:LU30 NK Cell Functional Assay LU30 0.00 OTHER:NKCP Natural Killer Cell Enumeration & Functional Assay (LU30) 0.00 PREP Preparation & Handling Fee 35.00 VZVD Varicella Zoster- Qualitative 87798 200.00 XAND XMRV by PCR with virus culture confirmation (87798) 650.00
"VIP Dx will bill MEDICARE as a courtesy service for our patients. A copy of the patient's Medicare card and any supplemental insurance must be sent with the test requisition and specimen. Medicare patients are required to read the Advanced Beneficiary Notice (ABN) on the back of the VIP Dx Test Requisition and sign in the designated area on the front of the test requisition. "
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Post by ruth on Jan 12, 2010 1:19:24 GMT -5
nicholson talks about chronic fatigue related to mycoplasmas. www.immed.org/illness/fatigue_illness_research.htmlthis is in 'treatment considerations" Notes On Morgellons Syndrome (Disease), Contributors to this information: Cheryl Nichols, Prof. Garth Nicolson, The Institute for Molecular Medicine and The Morgellons Research Foundation, Revised Patient Information (Updated 2/2/09) rtf doc
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Post by ruth on Jan 12, 2010 13:59:07 GMT -5
i do not see agrobacteria test in the above available tests.
we absolutely need to be test for agrobacteria and probably more than virus and mycoplasmas.
i wrote to the company to see how we can get the agro test. i'll post the answer i get.
the answer i got was they do not test for agrobacteria we need to find a lab online that tests for it.
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Post by Sidney on Jan 12, 2010 15:28:07 GMT -5
Ruth, my opinion of Dr. Garth L. Nicolson is that he is a dedicated scientist.
He was very involved with Gulf war Syndrome because his stepdaughter was a flight nurse or something and came home from the gulf very ill with a Mycoplasma infection. Garth and his wife both became ill too if I remember correctly. He's a big believer that long-term Doxycycline treatment is very effective and it's a cheap abx. Other drugs he recommended were Cipro..and I don't remember the others.
I've posted this a hundred times over the years...(well, many times!) and again, a group of us were tested through Dr. Nicolson's lab back in 1997 . All of us had lesions, fibers, glitter, black specks, stinging, all of the usual sensations, some more pronounced and more ill than others of us. All but one tested positive for Mycoplasma Fermentans (Incognitus) and that was Ave W., of Ojai, Ca. who was positive for Mycoplasma Penetrans. My husband was tested too at my insistence, and was negative. Ave's case and her suffering were among the very worst I have ever known. She was actually passing insect parts in her urine, confirmed by the County health department. I have the paperwork. She wore her hair in a turban day and night with Zink Oxide slathered on her head, and slept sitting up on a straight chair with her feet positioned on another chair. She was immaculate as attested to by Dr. Fred L. Frye who visited her in her home. She died at age 87 or 88.
She attributed her own infestation to having a large load of mulch delivered. She'd been a dedicated gardener.
Ave had "help" three or four days a week, by insisted on doing her own laundry and actually boiled everything in a large pot on her kitchen stove. She was terrified the lady who helped her would be contaminated, so took all kinds of precautions to spare the woman becoming ill.
Ave had been a World War II Field nurse and later worked as a County Health Nurse. Everytime I think of her I want to scream because of her suffering.
Back to the Nicolson Lab, at the time our group was tested the cost was $150 to identify Mycoplasma and another $150 to identify the species. At that time we all paid up front when we sent our vials of blood.
Now they take Insurance if anyone is interested.
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Post by ruth on Jan 12, 2010 23:06:28 GMT -5
sid, did you do the doxy?
i did cipro for 2 1/2 years pulsing with a variety of others that i would have to look up, but not doxycycline.
it looks like he is using the vipdx lab for bloodwork now?
how long did ave live after getting M?
Lord, it looks like we have a bit of everything, doesn't it
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Post by Sidney on Jan 12, 2010 23:38:59 GMT -5
sid, did you do the doxy? i did cipro for 2 1/2 years pulsing with a variety of others that i would have to look up, but not doxycycline. it looks like he is using the vipdx lab for bloodwork now? how long did ave live after getting M? Lord, it looks like we have a bit of everything, doesn't it I can't remember how long I took Doxycycline, Ruth, but after seeing the LLMD in Missouri I pulsed abx for a very long time. Maybe they helped and maybe they didn't. I just don't know. Germ" soup for sure.
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Post by bannanny on Jan 16, 2010 19:40:01 GMT -5
Thanks for all the info ruth... I'm gonna print it out and bring it to my new doc. Just to let you know... I wrote an email to Dr. Thrasher the other day. It read... I guess it's time for me to accept that Dr. Abbott wasn't as sincere as he came off to me when he said he was interested in knowing about our observations and all. I can't get a reply from him now about anything... not even a reply to the lengthy email I sent him regarding all those observations and the pics that followed it. He may have well just disappeared off the face of the earth completely. Too bad too, I actually felt hopeful for awhile there that someone really wanted to help us. Thanks for everything tho Dr. Thrasher... it was nice while it lasted. love ~~ RobinThis was his reply to me... I spoke with him last week. He is still interested. He may be out of town, off to a scientific meeting, or something else like sick with the flu. Do not give up yet. I am leaving for Tucson tomorrow for week on business. I will be checking my email. I will email Dr. Abbott and see if I can raise him.Anyway, just wanted to share... maybe I shouldn't have written what I did, but I'm very confused right now. hugs ~~ bannanny
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Post by Sidney on Jan 17, 2010 1:16:33 GMT -5
Bannanny, Dr. Abbott's lab has done and continues to do what we've asked of them.
While I would love to get a medical mycologist involved, Dr. Abbott and his staff have not failed us.
This coming week should yield at least one more culture results, possibly two. Dr. Abbott's lab cannot help us medically. They are doing what they do for US as a favor, in my opinion, and since they cannot treat us or even make suggestions regarding treatment, we need to appreciate what they CAN do.....and move on. Several of us are having a really tough time of it right now, but look at what we've accomplished thus far thanks to YOU contacting Dr. Thrasher who put YOU in touch with Dr. Abbott. You did good. Don't expect more than they can offer...and truly, I so understand your "desperation," and am not lecturing you at all.
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Post by ruth on Jan 17, 2010 11:12:54 GMT -5
i agree sid that dr. abbott has done for us what his lab does species mold growth from petri dishes. we got an additional bonus with him which is why dr. thrasher probably recommended his lab. his work is listed under medical mycology. rest assure he is looking at the data we are presenting. i don't see how he cannot. www.naturallinkmoldlab.com/pdf/NLML-Publications.pdfMedical Mycology: Abbott, S.P., L. Sigler, R. McAleer, D.A. McGough, M.G. Rinaldi, and G. Mizell. 1995. Fatal cerebral mycoses caused by the ascomycete Chaetomium strumarium. Journal of Clinical Microbiology 33: 2692-2698. • Dr. Abbott in collaboration with medical mycologists Lynne Sigler at the University of Alberta, Canada, Rose McAleer of Australia, and Deanna Sutton and Michael Rinaldi at the University of Texas describe a series of cases of fatal brain infections caused by a rare species of Chaetomium. The paper also summarizes known cases of human infection caused by other species of Chaetomium. Sigler, L., S.P. Abbott, and A.J. Woodgyer. 1994. New records of nail and skin infection due to Onychocola canadensis and description of its teleomorph Arachnomyces nodosetosus sp. nov. Journal of Medical and Veterinary Mycology 32: 275-285. Sigler, L., P.C. Kibsey, D.A. Sutton, S.P. Abbott, E. Zilkie, D.I. McCarthy, and A. Fothergill. 1999. Monascus ruber, causing renal infection. Abstracts, American Society for Microbiology, 99th annual meeting, Chicago. Pp. 297. Sigler, L. and S.P. Abbott. 1996. Filamentous basidiomycetes from clinical sources. In: Culture collections to improve the quality of life (Samson et al. eds.). Proceedings of the eighth International Congress for Culture Collections, Veldhoven. Centraalbureau voor Schimmelcultures, Baarn, Netherlands and World Federation of Culture Collections. Pp. 386-389. • Research into various aspects of human fungal infectious disease and clinical
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Post by Sidney on Jan 17, 2010 19:06:55 GMT -5
i agree sid that dr. abbott has done for us what his lab does species mold growth from petri dishes. we got an additional bonus with him which is why dr. thrasher probably recommended his lab. his work is listed under medical mycology. rest assure he is looking at the data we are presenting. i don't see how he cannot. www.naturallinkmoldlab.com/pdf/NLML-Publications.pdfMedical Mycology: Abbott, S.P., L. Sigler, R. McAleer, D.A. McGough, M.G. Rinaldi, and G. Mizell. 1995. Fatal cerebral mycoses caused by the ascomycete Chaetomium strumarium. Journal of Clinical Microbiology 33: 2692-2698. • Dr. Abbott in collaboration with medical mycologists Lynne Sigler at the University of Alberta, Canada, Rose McAleer of Australia, and Deanna Sutton and Michael Rinaldi at the University of Texas describe a series of cases of fatal brain infections caused by a rare species of Chaetomium. The paper also summarizes known cases of human infection caused by other species of Chaetomium. Sigler, L., S.P. Abbott, and A.J. Woodgyer. 1994. New records of nail and skin infection due to Onychocola canadensis and description of its teleomorph Arachnomyces nodosetosus sp. nov. Journal of Medical and Veterinary Mycology 32: 275-285. Sigler, L., P.C. Kibsey, D.A. Sutton, S.P. Abbott, E. Zilkie, D.I. McCarthy, and A. Fothergill. 1999. Monascus ruber, causing renal infection. Abstracts, American Society for Microbiology, 99th annual meeting, Chicago. Pp. 297. Sigler, L. and S.P. Abbott. 1996. Filamentous basidiomycetes from clinical sources. In: Culture collections to improve the quality of life (Samson et al. eds.). Proceedings of the eighth International Congress for Culture Collections, Veldhoven. Centraalbureau voor Schimmelcultures, Baarn, Netherlands and World Federation of Culture Collections. Pp. 386-389. • Research into various aspects of human fungal infectious disease and clinical TealThank you, Ruth. I'm sure you noticed that some of the top Mycologists are listed along with Dr. Sean Abbott.
Bannanny, we're all sick and tired of this disease, but if you're looking for a doctor or scientist to "hold your hand" offer words of care and encouragement, give it up. It ain't gonna happen. There is a limit to what we can expect from medical professionals and scientists. Just to have one of them actually listen to us and offer "something" is a huge bonus for us. How many times have we all been kicked to the curb? Way too many to even mention. Therefore, you can obtain the support you need from people who love you and care about you. People who suffer your symptoms abound....depend on them for support and be thankful for any doctor, lab, or scientist willing to help us in any way. They are too few and far between to feel critical of any person or organization,,,tempting though it is to point a finger or question their motive.
Regarding the mold/fungus involvement, the best thing we have going for us is Dr. Abbott's lab. Again, I encourage others to participate in this new avenue, and Bannanny, YOU made this happen. Thank you.][/color]
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Post by bannanny on Jan 18, 2010 19:59:00 GMT -5
I know Sid... I said I was just feeling very frustrated. I mean even some of you started to think Dr. Abbott wasn't what you thought he was and were tying him into some pesticide company. We all get there sometimes thruout our trials. I did get an email from him today saying he hadn't received any of the emails I'd sent him. I don't know why, but I replied and told him I was sorry if I sounded frustrated and that I KNOW he can only do so much and that what he did has been greatly appreciated.
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Post by Sidney on Jan 18, 2010 20:09:55 GMT -5
I know Sid... I said I was just feeling very frustrated. I mean even some of you started to think Dr. Abbott wasn't what you thought he was and were tying him into some pesticide company. We all get there sometimes thruout our trials. I did get an email from him today saying he hadn't received any of the emails I'd sent him. I don't know why, but I replied and told him I was sorry if I sounded frustrated and that I KNOW he can only do so much and that what he did has been greatly appreciated. Bannanny, we're all frustrated, some are very ill, and I do vaguely recall someone posting something trying to link Dr. Abbott to a pesticide company. Hopefully that idea died down quickly, and personally, I wasn't in on it and would never be. Dr. Abbott's lab truly can only do what they do, but I do trust them to do their best and want to continue working with them. I intended to order more petri dishes from them today, but got sidetracked because I've been sick. Hang in there, Bannanny, that's all any of us can do for now.
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Post by bannanny on Jan 19, 2010 21:03:06 GMT -5
I'm hangin in there Sid... I always have and I always will. I'm also very aware of the fact that some of us are very ill... you don't have to remind me of that ever. I'm glad I did what I did tho by sending an email to Dr. Thrasher and didn't give up completely. I got one today from Dr. Abbott that read... Hi Robin:
Dr Thrasher mentioned that you had been trying to get hold of me... I did not receive any recent emails from you, did you send them to this email address? Please resend, sorry I was not ignoring you!So I emailed him back and also resent the legthy email I sent and the one following it with all the pics. His reply... Hi Robin:
Thanks for resending, I did not ever receive this one, you have a ton of observations and information there! Also, I did not get the second email with the photos, did you resend that one too? Perhaps if there are too many photos and the email was too large to get through... I’ll make some more notes and pull some thoughts together and get back to you once I look at the photos too... We will try to make some sense of it all! Take care, have a good day
SeanSo I resent the pics for a third time and hope he finally receives that one as well. I only did what he asked me to do and sent him info about our observations and all. That was why I started to get upset... becuz he TOLD me he wanted to know. But all in all, everything has worked out for the best once again. love you ~~ bannanny
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Post by fritolay66 on Jan 20, 2010 17:59:28 GMT -5
Hi guys,
I received my results today.
Only one area was cultured, and that was my tear ducts (eye).
I had 15 colonies identified in the agar, when I sent it, there were only three formed.
12 Cladosporium herbarum 2 Cladosporium sphaerospermum 1 Penicllium brevicompactum
Cladosporium herbarum has a telomorph, Mycosphaerella tassiana, of which I think I was able to capture in my later photos of my original petri.
Frito
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