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.)
Hello Thurst was is Beryl. Please for the sake of others And there
appears to many more in much distress. Document your findings and
find a medical outlet for this information. whatever you are doing you are making headway. I am very excited for you. Please keep in touch with us it would be terrible to not know how you progress in your fight for full health. God bless Beryl What about starving oxigen by using Vaseline Try it on just one Never know
You are exactly on-point. Good for you. I'm not sure who you addressed this to, but I will be anxious to hear about the results from your tests.
When I was taking Doxycycline I was encouraged. Then my doctor had labs done on kidney and liver, since I only have 1 kidney.
Test came back my liver was unhappy and my Creatinine went up .1 so she told me to stop. That was a while ago. Now just trying to figure out what else can be done.
I started to have, what I think, are Demodex mites in my eyes now x 6 months (about). Havent found a doctor to help with that either. Been to 2 ophthalmalogists who only want to talk about cataract surgery. Who would want someone to open up their eyes and let these mites inside? I've read a scientific study on ocular demadex mites and cataract surgery. Not good outcome so I declined.
Google "Holman Morgellon Foundation, Austin, Tx" and read everything you think is appropriate for you. Then email them. Also, see if your doctor will test you for Lyme Disease. Be aware not all labs know how to do this test. Go to "Texas Lyme Disease Association" website. I have read and been told that Morgellon is an underlying condition to Lyme Disease. BUT…some have Lyme, some don't. Go figure!!
Elizabeth
Okay. I would appreciate.
Thank you Greg. I am so sorry it has taken me so long to reply. I've also been in a very dark place since Thanksgiving/Christmas. It happens every year since I lost my only child April 2013.
I have posted some updates on my Original Post at this site.
Try googling the "Holman Morgellon Foundation in Austin Tx" and read read read EVERYTHING that is pertinent to you. Also, I've read that a good percentage of us that have Morgellons, tested positive for Lyme Disease. If you can, go get tested. The treatment for Morgellon & Lyme Disease is the same, Doxycycline. Unfortunately, I had to stop because my liver and kidney were not happy.
Trying to find something else to take.
Jenny, I assure you I'm not at all tough!! Desparate might be a better descriptor.
Hmmm…I don't remember ever using that symbol. Did you see one?
Thanks!
E.
Is that the only housing unit in San Francisco? Could you possibly find another place to live or ask a friend or family member to rent a room to you?
Yes, you are lucky to have someone close to you who believes you. I have two sisters I always thought the three of us would always have each others' back. Nope, I was wrong. Here's how they get out of not thinking or worrying about me: "we believe you, but until a medical doctor diagnosis you, we don't really know what you have."
Now, everyone who has this disease knows it is a somewhat newish thing. There aren't even very many doctors who have even heard of it. Right?!! When I explained that to one of them, she goes. "Oh." That's all she said. The other one said, "well, isn't that just like our family – getting strange illnesses," and laughed. I agreed with her and laughed, too. The other one will do anything I ask of her, don't get me wrong, but she is a die hard, " there is nothing wrong unless a doctor says there is something wrong."
Thanks for the chuckle, by the way. The ones about having a carnival on your body, and having couples night. LOVED THAT!!!
Elizabeth 🥀
The dermatologist in Tyler, TX prescribed Minocycline which I took for almost 60 days. I.cant remember why I stopped taking it. The doctor in Houston prescribed Doxycycline, 100 mg., twice s day. It really seemed to help, but she had me do lab work after 30 days and found my liver and kidney was unhappy. Tokd me to stop. That was the end of November. I emailed her last night. She prescribed another antibiotic to take twice a day, but only on Monday. Wednesday, and Fridays…then I will get lab work at the end of 30 days.
I spoke with the Director of the Holman Morgellons Research Foundation. She told me she went through "years" of antibiotics…all different kinds through the years until she was finally able to stop.
Cindy is an R.N. and she and her late husband, Charles Holman, traveled all around the United States looking for help anywhere they could find it. Her story is on the C.E. Holman Foundation website. Google it.
There is tons of information and photographs of what Morgellons can do to your body inside and out. That's when I realized some people possibly have it worse than me, but we all suffer no matter if you can see it or not. Mine tried to get on my legs, arms and back, but I found some debriding solution online that really helped my skin everywhere except my scalp and hair.
I posted that website in one of my postings here.
The Demodex infestation is now, not only on my eyelids, lashes snd brows, but on my face and in my hair with the Lyme spirochetes and other parasites. I havent been able to classify them yet.
Cindy and Charles were originally in California and ended up in Austin, Texas where they found the most help for her. That's how the Morgellon Foundation was founded..
http://www.cehf.org
I am going to post some more pictures, but I will wait til tomorrow. It's late and I'm exhausted.
@basslakeview
I too am fighting this battle or what based upon research and videos seems to be affecting my home, dog and family. I went to my doc in Houston TX Dr. Patricia Salvato and am awaiting lab results for everything..mold, liver & kidneys, IG etc. looking for answers on how to decontaminate my home. Finding fibers and things that can’t be described. I am seeking answers as to how and what is going on. I was diagnosed with Lyme disease back in 2003 and never recall a bullseye rash. Wondering if my home was infected when purchased in 2001. It was a rental and the carpet had been replaced but found out when Hurricane Ike came through that padding was never replaced or floors cleaned. Lots of disgusting filth underneath and when dirt placed outside it grew some serious mold and fungus within a day or two. I’m not a dirty person so this was very disturbing. My master bedroom has always had a problem w accumulating what I thought was dust or combo from fur babies due to location of return air vent. Now I’m not so sure. I’m fighting for my home, my family and my sanity while looking for answers. The home was remodeled inside in 2011 and all carpet removed and replaced w tile. Paint etc. Now something has taken over. Things that I thought were just always there I am finding out that is not the case. Spilt toilet bowl cleaner on bathroom floor when cleaning and it magically cleaned what I thought was just mess that contractors did not take care of regarding grout. So now we are in the process of removing all items starting with masterbed room closet and bath. As life has sent me struggles due to loss of husband 4 yrs ago I am financially struggling to keep the home which is all that I have as an investment and for retirement. Oh and back to removal of carpet. I fought Lyme disease with IV rocephin for 2.5 years and had major skin infection (morgellons?) that I fought for an additional 5 yrs with alternating Zyvox and vancomycin IV. Upon removal of carpet and cleaning floor the skin infection finally ceased. Something has happened though now again. I don’t have the skin problems but my dog has something going on. Vet doesn’t believe me and spending money left and right that I don’t have. Dog has missing hair, scabs and sores on body. Vet says it’s just allergies and a fungal infection. Boyfriend itching and finding fibers. To make matters even more interesting I scrubbed dog very well with Nizoral AD shampoo and somehow got sick with what ER said was thrush. Tongue majorly infected, coated w white film and blister like area swollen and Difficult to eat and swallow. Finding particles that look like spores of some sort. Thought it was just leave particles that has been brought in with traffic due to season. But when pickup up holding up to light and looking at under microscope they seem to morph and have fibers coming from them. I sometimes wonder if I’m losing my grip on reality / my mind. Doc says so many patients are coming forward so guess I’m not alone. Scared definitely. More concerned with health and survival as things can be replaced. Don’t want to transfer to others etc. my apologies for grammar and writing as swamped at work as well. Thank you for listening and sharing your info. Any comments or suggestions I welcome. It’s hard to air your dirty laundry and somewhat overwhelming. Sending positive thoughts, vibes and healing to all. 💜
Before I go into any updates, has anyone tried penicillin cream from Mexico? You know a person is getting desperate when they are using medications from another country, but I dabbed it on tonight and I have to say, the results were almost immediate. I know it’s not a cure, but if it can heal and limit these horrific lesions on my face, that would change my life right now.
I have gotten pretty discouraged with dermatologists, but my husband, equally discouraged, surprised me with a derm. appointment at Cooper clinic today. I immediately felt the anxiety hit me, but I did go. Unlike so many others, he was at least kind and compassionate. However, he is old school and told me that he does believe I have a systemic infection, but that my anxiety is preventing my healing. In a way, I think he’s probably right, I spend every spare minute trying to fight this thing, lose all track of time, and get behind on everything. And although I know the signs and symptoms I see are real, I wonder if I am exacerbating it. Doxycycline is kicking my butt and I have not seen much improvement yet (if any) and I do not have my lyme labwork back to know if I’m even going to test positive.
One thing I do notice improvement when doing is switching everything up constantly. For example, I bought the ivermectin pour-on so I can dilute and dab the areas on my face and spray pillows… and at first it worked great, but quickly stopped. So I took a break from that and went back to just using peroxide. When the peroxide stopped working as well, I switched back to the ivermectin pour-on, and like magic it dried everything up immediately. I was so excited that I made the mistake Of picking some of the dry skin off, snagged an area that was not ready, and that triggered the entire reaction all over again.
I don’t know, maybe the doctor is right and I am just having a dramatic reaction to stress and anxiety. I guess technically my nerve endings could be so sensitive and my body so stressed that it is pushing dead skin cells and toxins out. That is just so hard for me to believe, and I do think there is a connection to our home environment. When I found the cluster of black stringy “mass” growing under one of my soap bottles and realized it looked exactly like black material I have seen in the sink after washing my face, it was hard for me to believe I could be self-inducing any of this.
The doctor wants me to take amoxicillin for one month, low doses of Xanax to calm my body down, and to get myself in a better frame of mind. At this point, I don’t have any better advice so I’ll give it a go. But I am going to work on eating as clean as possible, drinking as much water as possible, develop a healthier daily routine and most importantly, lots of prayers of gratitude and healing. I will probably take a break from the anti-parasite meds as well, although if I start itching, I’m glad I have them on hand! And I’m not going to be throwing this penicillin cream out, although it smells like death!