UPDATED 6/16/2019
Hi,
I am Elizabeth Bass and I live in Southeast Texas very close to Galveston and Houston Texas with my companion Millie, a Yorkie. I moved here in March 2018 from Northeast Texas (Longview/Tyler) with a scalp condition that keeps morphing into something else, each time getting worse. It began in May 2016, and here it is 2019 and I still have "it," but I've learned a whole lot I never really wanted to know.
I have no idea what exactly is wrong with me, but because of what I found in July 2018 on my pillow I'm thinking Morgellons because I found the same looking thing someone else had posted and they were talking about Morgellons. I have attached two photos, one close up and the other is the original so you can have an idea of the actual size.
I also have these white sparkly/shiny critters on every inch of my body, especially my hair/scalp, and face/neck. They can only be seen if I take a picture using my camera with the FLASH ON. Otherwise, no one would know there is anything wrong with me.
This was discovered by accident when in May 2016 I got my long hair all cut off. Right after that (about a month) my head started itching in the upper center back. I couldn't see anything in a mirror so I picked up my phone and took a picture. I still couldn't see very well so I turned the flash on. THAT WAS IT!! (I saw more than I wanted to see.) At first I thought I had bed bugs and did everything I could to get rid of them, including lice treatment. Then I started seeing these shiny, sparkly-looking things. I accidentally caught some of them on camera flying around my head. I kept trying everything I could to rid myself of "them," but nothing has worked so far. However, it is now June 2019 and "the condition" only changes (morphs). It never goes away. I have seen 9 dermatologists, 2 derm PAs, 2 internists, and 2 GPs, a total of 16 (maybe more), counting the one I'm with now since "it" began. My hair fell out in that spot, I had lesions where the hair was missing, and when a new lesion would begin it was always itchy, then that hair would fall out, too. My hair grew back, but not quite as thick.
The fever and rash went away, but the achiness and lethargy/fatigue has stayed with me all these years. About a year or two after that fever, and after going to many, many doctors between Shreveport, Dallas, Tyler, and Houston, one of them said I have Fibromyalgia & Chronic Fatigue. I simply took his word for it. I was so very tired of seeing doctors, doing lab work, driving and working a full time, stressful job. I needed a break!
Then in 1999 I lost my left kidney to an oncocytoma (tumor the size of a softball), benign. Lost my gallbladder in 2004, had carpal tunnel surgery on both wrists at the same time in 2005. I don't think there's much left. I had already had a thyroidectomy in my 20s (Graves Disease), and a hysterectomy in 1986. Then, the BIGGEST loss of my life…my only child in 2013. I honestly did not think I was going to make it.
I had told every single one of ALL those doctors the story of the high fever and rash and how my GP thought it was Lymes, but lab was negative, and not ONE of them (nor me) simply thought of running another Lyme test until last year 2018. On Sept 18, 2018, my 72nd birthday the results were in and I was at my doctor's office with my sister to get the results. That test came back with all sorts of red flags, 30 years later!
Now I am 72 and the second antibiotic I'm on is not doing anything. After one month on Doxycycline (had to stop because my liver didnt like it) and two months on Clindamycin I haven't noticed anything positive, but that doesn't mean nothing is happening, RIGHT?!!. For some reason she didn't put me on anything else right away after the Doxy. Maybe I had to give my liver time to heal. She never said why, and I forget to ask these questions. I think I am going to simply start feeling POSITIVE about things no matter which way they go!!
UPDATE: I finally found a doctor who 'seems' to want to help me. She ran a Lyme test on my blood and was very excited she could help me which was very encouraging as you can imagine.
I have had Lyme Disease and a co-infection called Rocky Mountain Spotted Fever (since 1988-1990ish, 30 years ago). I remember it like it was yesterday. I had a high fever, achiness all over like a flu sickness, and a rash. It was not a flu. And the first thing he said to me was, "It looks like Lymes Disease to me!" Unfortunately, the lab report came back negative and neither one of us thought to do another test.
Yet, for some reason, I keep replaying one of my favorite songs in my head, Eric Clapton's, "NO MORE TEARS IN HEAVEN." (It makes me smile because I know I WILL see my son again and be able to talk to him.)
Ever heard of of the song? Check it out. Just Google it and listen.
USEFUL WEBSITES:
(https://thecehf.org).
To contact them: http://thecehf.org/contact.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/ (You have to create a sign in with a password, but it's very simple and it's free.)
Liked by Kanaaz Pereira, Connect Moderator, basslakeview, capausz, bailey32 ... see all
Elizabeth, I get up take all linens off. They go outside. Got rid of mattress. Using a rollaway that can be hosed off use memory foam mattress. Detergent and borax every time I feel crawling I change clothes. They say polyester is better. I mop with wetjet and bleach, several times a day. Clean my flip-flops several times a day. Use dryer sheets everywhere. Dry my hair hot dryer. It's all consuming to get thru the day. Some days no crawling- when it rains more crawling. Pretty AWFUL!
The 1st picture has white lines and arrows pointing at each biofilm organism that has placed itself on my face, eye area, including both eyes, but the pic is only of one eye.
Next picture is the original. (Not zoomed in.) There should be no lines or arrows. You will have to put the pictures on your computer then zoom in to see what I see. I used my epencil from my Galaxy Note 8 (Samsung) phone.
You shouldnt need to zoom in on the picture with the lines and arrows. I had to zoom in to color each piece of biofilm so it is coming to you already zoomed in on.. Most of them are triangular shapes, but some are not. There are a lot that look like shooting stars with a white or black round "head" and to me the film is trailing behind. They stack themselves one on top of the other until you cant see them at all, but you learn to know what to look for. Any questions, just ask. If your pictures are coming up blurry it could be happening if you are trying to see them on your smartphone or tablet. Just try another computer or let me know and maybe we can come up with another picture that will be better.
The problem I have is getting the correct picture on here. Sometimes (like right now), my eyes aren't seeing too good and I may think it's the one I'm talking about, but because of the biofilm on my eyes, I can't see those tiny pictures that post to this website and until I hit the REPLY button and then go back to them I'm not sure.
It sounds as if you have the problem under control. I tried following Richard Kuhns Plan diet and all, but at 70ish it was all too consuming. I couldnt keep up with it all. I've had Lyme and RMSF over 27.5 years so at my age I do what I can to keep myself somewhat comfortable. I have had the pain for 27 years, ever since the fever and rash in 1991. The dr knew exactly, but lab came back negative and then he retired. Just leaving it all up to God and doing as much as I can for myself is all I can do right now. I'm not afraid of dying. My only child died 6 ye have rs ago. I've been ready ever since then, but God is not ready for me to stop suffering so I try to help others (and myself U f) in the meantime. I would POVE to get the biofilm out of my eyes. I've gotten to where I can hardly read.
What about the Borax rinse for my hair. Arent you the one who told me about that? Do you have a protocal for mixing and applying?
I put a sulfur mask on my face tonight. You should have seen me. I felt I had to keep my eyes tightly shut because if the mask gets them excited they start flying away and didnt want more in my eyes. Anyway, I'm standing in the bathroom. Trying to apply this mask with my eyes closed. I took a picture as fast as I could as soon as I finished. Oh my, they where trying to scram away from me, even causing my hair to stand up on end. I need to get some sulfur capsules and I'm almost out of the facial mask…it's ProActive brand.
Elizabeth the doxy comment was just for that specific person while determining whether or not to see a LLMD. Doxy alone is t going to fix Morgellons but it better than the other stuff she was using in my opinion. I realize your original doctor thought Lyme and then the negative test prevailed but that does negate the fact that you underwent decades of medical issues because of that failure. My problem is why is the same stupid shit occurring 30 years later. But at any rate, I know of and took the igenex test. I took the full test. You did not cause the full test is over 2000. Who decided that you take the less expensive test if it is covered for you? I am concerned for you in that there is another test by igenex for babesia. I don’t think you took it based on the price you’ve noted. Do you know what the test covers? Did you decide on the partial test or did someone else? Were you tested for babesia?
@1kayk
I think when you feel the eggs creating an area you have to destroy ut. I use thick face mask like Mary Kay anykind as long as it smothers them I also scratch off a rough area especially if it's on my face. I scratch off then apply clear iodine or alcohol.then I use New Skin liquid bandage. I just figure the more u kill the less eggs are laid.