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
Another good website to do searches and read scientific journals and research papers is here, but you have to create a sign in, that's all. It's simple and it's free to everyone…..
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/
Hi Shelby,
I tried Doxy for a month but my liver and my only kidney didnt like it. Been on Clindamycin now for almost 2 months, but I'm going to stop it until I get lab reports back. Probably about 3-4 weeks. We're sending off to IGenex Inc, a privately owned lab that only tests for Lyme and its co-infections. The only insurance they take is Medicare. Nothing else. The test my dr ordered is $1346.28.
Are you talking about R.K. in New Jersey? Have you read his book? I've talked to him on the phone a few times, read the book, and it actually makes a lot of sense. My problem with the diet is the very beginning, it's a DIET. But I dont remember there being fasting involved, but I forget a lot of things!
In the beginning you're suppose to go completely off sugar and eat a lot of meat. I'm not a vegetarian, but dont really like meat unless it's an expensive steak or filet mignon, and I absolutely HATE diets. LOL. ❤🤪
Thank you for your response Elizabeth…I appreciate it more than you know! I am actually posting for my sweet girlfriend…she is not doing that well…I have read your story & although you say you aren’t a trooper…you are.
Liked by basslakeview
Shelby,
Just one little correction, I was tested for Lyme Disease in 1991. The test came back negative and then the doctor retired, otherwise, I feel he might have done another one later. Funny thing is. I even told most all the other doctors I've seen over the past 27 years that story, too.
I think sometimes we. As the person sick or dying, should try to do anything our gut tells us. You know, that little thought we get during the day or night that makes you wonder if it could be true, or maybe I should mention this or that. Write them down as they come into your mind and then tell doctor about it. That's the way God speaks to us.
Love & Prayers to EVERYONE. I 🤔🙏❤
Liked by capausz
Thank you, Price 1975. You are a trooper, too! ❤
Look at yourself writing to help someone you love! I don't know anyone (including myself) who has ever had someone do that for them.
That's love and selflessness. There are not too many who do things that take time and effort to help others.
I would love to have a friend or family member like that.
Is that North or South CA.?
Have you tried the CA Lyme website?
Texas has one and there is also a national one as well. Try doing some internet searching. The Texas website address is http://www.txlda.org. maybe CA's is similar: http://www.calda.org
The National Lyme Disease Assoc's web URL is:
https://lymediseaseassociation.org/contact-us/
They all have a "contact us" section. Write them an email asking for a list of Lyme literate doctors in CA. Maybe that will bring in some information.
Also, I just ran across one I'm going to investigate. It is
Home – ILADS
Search domain http://www.ilads.org.
https://www.ilads.org
ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care.
They probably have a "contact us" section, too. Even though it's for doctors, it wouldnt hurt to let them know a patient's plight to find a Lyme literate doctor.
A good website to do your own searches that has SO MUCH INFORMATION and all you have to do is make yourself a member – simple and free: https://health.gov/nhic/
Good luck and prayers to you!
Elizabeth. 🙏
James Ch 1
p.s. Keep us posted here!
We need to send a "Contact Us" email to that web address asking them if they might think about taking that old adage down off their website. That might help all of us who are desperate. Allso, copy the URL address and send it with the email so they will know exactly where it is.
Or send me the URL address where you found it, and I will do it.
😊 Elizabeth
Thanks, Kay. I'm going to try that as soon as you get back to me! Can you tell me how it's administered?
How much Borax?
Do you put it into a shampoo or do you just mix with water and pour it over hair? Does it need to sit on hair for an hour or so, then rinsed out?
Anything else I should know about the Borax? Like should it not be mixed with anything but water? I would think it could be mixed with anything. Isn't it mostly earth?
I am trying to figure out how to get the BIOFILM to stop wrapping me in a cacoon-like web. It's everywhere, LITERALLY!! It's in my hair, skin and now it's in both my eyes, lips, inside mouth, and in ears. I have to use an eyewash often in order to see better. (I've attached pictures of it on my eyes.)
I was on FB last night on a page called (I hope I'm right): "Morgellons and Parasites." People have even started sending in photos of themselves trying to share what they have had to do on their own. Some are poor, no insurance, and completely desperate or have given up..
There is one who has completely given up. He lives by himself in a 350 year old cabin inherited by his family. He has a humorous personality and seems to be trying to keep it light, at least on the FB page, but he has to be in a lot of mental and physical gut-wrenching pain.
It was very hard and difficult to read what was happening with the people on that web page to say the least, but it has made me aware of how many of us are out here on our own, in despair, trying to heal ourselves and although I dont have very much money, I do have excellent insurance. There is simply not enough Lyme literate doctors to help everyone. Nor are there enough compassionate people to talk to, except on this web page and they are helping each other the best they can. It makes me feel more compassion for others, too, so I joined them. I am alone, too. My husband died in 2010 and my only child (age 33) died April 21, 2013. It has been a 6-year learning curve for me…being "alive alone" is no picnic and adding illness on top of grief was almost too much for me last September, but I am much better mentally. No one I knew except one of my sisters and a work friend, cared and saw it happening to me. That was my reason for moving from North Texas to South Texas where my sister is most of the time. She and hubby leave 6 months out of the year every year to get away from the heat in Southeast Texas, although, except for the humidity, it really isnt as hot as North Texas. We are right on the Gulf of Mexico and there is always that tropical breeze blowing off the water. She is on the Bolivar Peninsula and I am just north of Galveston on the Bay area. We were raised in Beaumont, Texas so the move was like a full circle coming home feeling. I didnt realize how much I needed to get back home.
I am posting pictures of what the BIOFILM looks like. It's not a parasite. It's what the Lyme/Morgellon Disease is capable of doing. It is like something from a science fiction book. The scientists are thinking that this new stuff (Morgellons) comes from Lyme Disease. Their studies show 98% of EVERYONE they've studied has or has had Lyme and/or its' co-infection(s).
♥️
Liked by capausz
I bought it at Family Dollar store $4.00. It's greazy so have to shampoo 2-3 times use mint and teatree shampoo . dollar store also. The first time I used 88 on my skin the mites ran out. I also use baby oil with aloevera and vit. E.dollar store $2.59. also any conditioner with Dimethicone lots have it smothers then. Good luck!
@basslakeview
Another excellent website that is connected to many more all around the world…..
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/