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Lyme Disease and its Co-Infections, Morgellons Disease and Parasites
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.)
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Incredible and unbelievable!! Is that a living THING that lives on you? Where do they come from? I am itching all over and have been for some time,but I attributed it to dry skin. Now I am wondering — and worried, since the itching is chronic.
It was inside my skin. I didn't see it come out and don't know where on my body it came from. I think because my scalp is the most involved part of this disease, it had to have come from there. It was on a pillow on my couch just exactly in a spot where it had to have come from my head.
I haven't been able to speak to a professional that knows about Morgellons so I have only what I can learn off the internet. There is research going on all over the world. I just watched a video from the Charles E. Holman Foundation in Austin Texas that was very enlightening. Some have it much worse than I.
Can I ask what are symptoms
Do you have burning on the skin.
I get tiny tiny little spots that burn and tingle itch. Then become a hive. Muscle bone aches etc but Lyme tests are negative. Sometimes the spots have tiny scabs.
Oh you poor soul is there nothing that anyone can do to rid you of this….
Perhaps you should go to a vet as I had a German Shepard that had just what you describe , couldn't see them with the naked eye but the vet said it was from cows…..I might sound flippant but I can assure you that my heart goes you to you with this torment , itching is terrible especially as you know it is these, mites that are coursing it ……I think you I'll get some action now, hope so anyway….Beryl
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1 ReactionI've had those symptoms as well, however, I have to say I think I have more than Morgellons. I have other symptoms as well. I plan to post more pictures I've taken over these past 2+ years. The best thing I think I've done is read, read, read books, internet articles, google Morgellons and other parasites. There's a whole lot of education out there. Until I found that first thing in the picture I posted in the beginning, I had no idea I had Morgellons. I've found I cannot depend on medical doctors always to heal me. They know NOTHING about parasites. I've been to 12 between Longview, TX and Houston TX. As you read and learn from others, some have been to many, many more. One woman has lost her home and family because no one believed her and she's all alone.
Check out these websites and many others:
http://www.thecehf.org/morgellons-disease-patient-resources.html
http://www.debridingsoap.com/Thank-You-Download.html
https://www.dovepress.com/history-of-morgellons-disease-from-delusion-to-definition-peer-reviewed-fulltext-article-CCID
One more thing. Burning skin, some say, is a symptom of a fungal infection. I've had that, too, on the back of my neck. I was given advice to use peppermint oil (100% pure, about 15-20 drops or a little more) into a bath of water when you bathe. Here's another website: when it opens, click on "Download Brochure".
http://www.thecehf.org/the-cehf-brochure.html
There is a list of symptoms.
Capausz,
You CANNOT see most parasites with the naked eye. I started taking pictures of the back of my head first because I couldn't see anything in a mirror looking backwards using a hand mirror. I picked up my cell phone one day over two years ago and took a picture, then zoomed in, but with the first picture I didn't use a flash so I still couldn't see anything. After that I realized I HAD TO USE IT WITH MY FLASH FORCED ON all the time. Sunlight does not produce the same results. I had just had my long hair all cut off so it was very short and I started losing ALL my hair in the middle back about the size of a small hand. There were lesions. BUT…with the camera I could see things in my hair and on my scalp that horrified me. From then on I was taking pictures anywhere I felt something biting me (before I brushed them away or scratched). I found a place on the internet that has a debriding soap that has helped me tremendously, but I'm still fighting them.
I've posted the website on another person's reply. Check out those websites. If you just google "debriding soap for parasites" you will probably find it. If you can't find them, let me know.
God bless.
Elizabeth
More photos as requested…
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1 ReactionElizabeth, my sister has been having the same problem you have. She got help from John Koo, M.D., a dermatologist who works with Murase at UCSF. She is going through menopause which is likely the cause of formication, the feeling of insects crawling across or underneath your skin. She has been help greatly by pimozide treatment. It has almost eliminated all of the formication. She has an occasional flair up, but for the most part she has been able to get relief. She was very reluctant to starting the treatment, but now knows that it has saved her life. I hope that you find a doctor willing to treat your formication and all it effects on your whole being including emotional and mental. Be open minded to who and what can and will help you and you will come through it and be able to live your life again. I wish you well in your journey to health. peace
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1 ReactionHello my name is Beryl and I have read your disturbing post…..
First may I say how sorry I am for your torment and go on to say that I had a German Shepard dog that seemed to have the same thing ….this was in Wales ……the vet said that he had caught it from cattle…..as far as I can remember he gave us something to bath him in ……perhaps the vets know more about this than doctors …..maybe to ask around a few surgeries wouldn't be a bad idea….sorry again for you plight……Beryl.
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