Lyme Disease and its Co-Infections, Morgellons Disease and Parasites

Posted by basslakeview @basslakeview, Aug 30, 2018

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.)

@maequinn27

Thurst. Just want to say that this forum really gave me hope. I have this horrific morgellons– white stuff growing from my facre– and also have lyme/bartonella. Appt with a lyme doc next week. So you all have had success reducing morgellons symtpoms with lyme/bartonella protocol of antibiotics through a lyme literate doctor ? I have a light of hope after reading this. Thank you and any specifics would help.

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Got better with praziquantel and fenbendazole

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Thanks. Will lyme doctors presrcribe Fenbendazole?

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A lot of what they are taking advantage of is energy. Particularly negative. You must surround yourself with "LIGHT" only. Some things that have helped me:
Ivermectin Rx
Selson Blue rubbed over the body
Eating 1-3 cloves garlic per day
Oregano oil supplement
MSM supplement
Vitamin C (you MUST boost the immune system)
Tea tree oil and coconut oil rubbed over body
Prayer and worship music
Support

Whatever you do, do not give up. I believe that's what they want.

Liked by buster69

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@maliney

Got better with praziquantel and fenbendazole

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Will doctors prescribe fenben or does it need to be purchased at farm stores?

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Hello Elizabeth, hello all fellow warriors – I apologize as I’m not sure if I’m highjacking this thread or exactly how this works, but upon reading your story (Elizabeth) and all the comments, I finally feel like there’s some hope for me… at least others who’d understand the hell I’m going through…

I’m a single mother (41 years old) of 2 rowdy boys and my life, which I thought would get better after leaving my abusive ex, has only spiraled downwards into a state of despair, embarrassment and shame. What I thought was hormonal acne, then thought was fungal acne, has bloomed into full-blown Morgellons (coloured fibres sprouting, hard, splinter-like debris being painfully pushed out of my skin, black specks which upon close examination are tightly-wound black fibres) – and it only appears on my face. My nose, mostly, which unfortunately is already my most prominent feature. I feel terrible as I’m so incredibly embarrassed to go out – I do for groceries, but only where I can checkout the items myself… I can’t even bear the thought of looking a cashier in the eye. I am trying to be strong for my boys, but it’s sooooooo hard. The guilt I feel from not taking my boys out and about as we used to do only compounds the feelings of shame. I’m not even sure why I’m sharing all of this, I’ve just felt so isolated and lonely and like a freak show… I’m typing furiously here, crying my eyes out… I guess I just need to connect with people who understand. 😭

Liked by buster69

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@thurst

I wanted to get a quick update… My skin is almost healed, but there are certain times when my face and ears feel extremely hot and flushed and that area starts to swell back up. I have to remind myself to stay calm, make sure I don’t have make up or anything else on, and apply topicals. But I received the urine lab that detects the DNA of tickborne bacteria. I tested positive for Borrelia miyamotoi-NPS; and Ehrlichia chaffensis-NPS. The NPS stands for non- predicted size, Meaning the organisms are extremely small and reproduce/morph quickly And are indicative of long-term infection. I don’t see that either one of these bacteria or necessarily lead to more gallons, although I know generally speaking lyme bacteria is. I also know that long-term infections are still disputed within the medical community, Even know they have found the lime bacteria within morgellons lesions and fibers. It’s crazy that there is proof, but still disputed that it even exists. I had switched to amoxicillin per the last dermatologist I went to, but my doctor has encouraged me to go back on doxycycline. If you use amoxicillin for Lyme, it’s recommended three times daily. I’m not sure if the steroid shot, the amoxicillin, the penicillin cream, or the small sonar device are responsible for improved healing on my skin, but I will keep using all because I’m finally feeling confident enough to leave my house!

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Hi @thurst I’ve been reading a ton of your posts. They have been extremely helpful. I’ve been researching/suffering with this illness for 7 years. Thank God we are past the talk of nano fibers, aliens, and the like. Like you, I too have a passion/business of healing and healthy living. I keep praying and holding my head up that God has given us to show others how to heal. Fortunately I don’t have a lot of symptoms except for the endless lesions all over my face and white rice things projecting from my skin. It’s getting so bad, I’m having a hard time covering it. It takes so long to put makeup on to just leave the house to GE groceries. I realize this is an early post of yours. I’m responding nearly a year later. How are you doing today (1/7/20)? What had been the most effective topical treatment you have found? Are you still taking the antibiotics and the Biocidin LSF and Monolaurian combo? I’ve used the food grade peroxide, grapefruit seed extract, and a host of DoTerra essential oils. Nothing seems to do the trick and if it does, it’s short lasting. I’ve tried steroid topicals and that just caused a fungal outbreak.

Just when I think I’ve gotten a topical protocol and flare up happens and I’m back at ground zero. I’ve been working with a Lyme literate DO PA for 2 1/2 years. Mostly herbals, Byron White stuff, and a few RX like Alinia and some crazy new anti malarial. While some months my Lyme gets beat back, and we focus on fungus, mold and other co-infections, nothing seems to change with the only symptoms I have; the awful lesions, the crazy fibers that Ill find in my eye lashes and other areas of my face, extremely red eyes, and the twitching hair. The lesions are the worst of them.

Please forgive this long post. I pray that you are still active in this forum. Perhaps we can put our respective health business heads together to heal ourselves and help others.

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@basslakeview

More photos as requested…

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Salt, it will kill it , I have same thing, soars on my body and my hair. I caught it in my drinking water, look at your water , for bubbles that have little eyes in them. Salt is the only thing I have found to break it down,

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@kimpossible

Hi @thurst I’ve been reading a ton of your posts. They have been extremely helpful. I’ve been researching/suffering with this illness for 7 years. Thank God we are past the talk of nano fibers, aliens, and the like. Like you, I too have a passion/business of healing and healthy living. I keep praying and holding my head up that God has given us to show others how to heal. Fortunately I don’t have a lot of symptoms except for the endless lesions all over my face and white rice things projecting from my skin. It’s getting so bad, I’m having a hard time covering it. It takes so long to put makeup on to just leave the house to GE groceries. I realize this is an early post of yours. I’m responding nearly a year later. How are you doing today (1/7/20)? What had been the most effective topical treatment you have found? Are you still taking the antibiotics and the Biocidin LSF and Monolaurian combo? I’ve used the food grade peroxide, grapefruit seed extract, and a host of DoTerra essential oils. Nothing seems to do the trick and if it does, it’s short lasting. I’ve tried steroid topicals and that just caused a fungal outbreak.

Just when I think I’ve gotten a topical protocol and flare up happens and I’m back at ground zero. I’ve been working with a Lyme literate DO PA for 2 1/2 years. Mostly herbals, Byron White stuff, and a few RX like Alinia and some crazy new anti malarial. While some months my Lyme gets beat back, and we focus on fungus, mold and other co-infections, nothing seems to change with the only symptoms I have; the awful lesions, the crazy fibers that Ill find in my eye lashes and other areas of my face, extremely red eyes, and the twitching hair. The lesions are the worst of them.

Please forgive this long post. I pray that you are still active in this forum. Perhaps we can put our respective health business heads together to heal ourselves and help others.

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Salt, it kills the fungus

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@shyzen

Hello Elizabeth, hello all fellow warriors – I apologize as I’m not sure if I’m highjacking this thread or exactly how this works, but upon reading your story (Elizabeth) and all the comments, I finally feel like there’s some hope for me… at least others who’d understand the hell I’m going through…

I’m a single mother (41 years old) of 2 rowdy boys and my life, which I thought would get better after leaving my abusive ex, has only spiraled downwards into a state of despair, embarrassment and shame. What I thought was hormonal acne, then thought was fungal acne, has bloomed into full-blown Morgellons (coloured fibres sprouting, hard, splinter-like debris being painfully pushed out of my skin, black specks which upon close examination are tightly-wound black fibres) – and it only appears on my face. My nose, mostly, which unfortunately is already my most prominent feature. I feel terrible as I’m so incredibly embarrassed to go out – I do for groceries, but only where I can checkout the items myself… I can’t even bear the thought of looking a cashier in the eye. I am trying to be strong for my boys, but it’s sooooooo hard. The guilt I feel from not taking my boys out and about as we used to do only compounds the feelings of shame. I’m not even sure why I’m sharing all of this, I’ve just felt so isolated and lonely and like a freak show… I’m typing furiously here, crying my eyes out… I guess I just need to connect with people who understand. 😭

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Salt , it's been working for me , lots of salt. Eat salty foods, it breaks it down and kills it

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@basslakeview

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.

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Hi. I am not sure if you are still checking this. It is possible that you have either dust mites on your skin, which really live on dust and dead skin (people can be allergic to them as well). The other option could be dendruff mites. These are on dogs usually and can live on humans but cant reproduce on people. These also are very small and they do bite. Once the animal is treated (which sometimes they need more than one type of treatment) they should stop bugging you. As far as tiredness etc…it could be a side effect of immune reaction that you are clearly having. Your immune system is 'overreacting'. The inflammation etc and being run down creates the tiredness. I would try to calm the immune system and stay away from anything that may exacerbate inflammation in your body. Give us an update on how you are. Agi

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@basslakeview

I only had burning skin once and it didn't last but half a day if that long, just things biting me that no one can see, but I'd U take a picture while its biting me I see it. I posted some pictures. Have you seen them?

I'm pretty sure I have Morgellons (some scientist say this is not a parasite, but a disease caused from Lyme disease) because of what I've found on my pillow and other specimens on my bed or after a bath. I've kept them in Ziploc bags. Just can't find a doctor to help me get through this before it gets worse.

I'll post more photos. Check them out if you know of anyone who has parasite problems or Morgellons Disease..

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I'm pretty sure I have it and it has consumed me! I am horrified and scared worried stressed & depressed! When I read most of the pacifying replies here I also got sick to my stomach… The hell with the ignorant ones who think you haven't looked into makeup & skin care products etc… if they ever contract this nightmare of a disease may God have mercy on their soles! Amen!

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@maliney

I have the EXACT same issue!
Started after an infested plant I bought. I saw a very white flying insect in my closet at the same time it all stated. Looked like a tiny moth. It was very white, pearly white.
Then I had white fuzz all over my apartment, super strange.
I’ve been battling this for 10 months now. My scalp is getting better but still “things” under the skin that comes out.
Nightmare!

Of all I’ve tried this is what seems to work best: feenbendazole, ivermectin, mineral supplement, tea tree oil, UV therapy, zinc shampoo

I was also on antibiotics 3 weeks doxycycline and Bactrin

That helped my joint pain and fatigue go away but not the scalp critters.

It is definitely some kind of flying white fly/mite/moth/aphid /flea involved in this.

I feel it is some kind of agricultural pest that infest fruit crops. The ones that ovipositor eggs inside of fruit. Micro leaf miner of some sort.

Google lint bug or lint mites
So many people dealing with this micro bug, but nobody seems to know what it is.
So confusing!

If you have found out anything new please let me know

Stay strong
Marilyn in NYC

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Good observations there Maliney. Also look at phoridae flies and bird louse. I've caught them here. They seem resistant to treatment. The bird louse, there is a close picture on Wikipedia somewhere, is long and pointy, and some might mistake it for another long skinny insect I can't remember the name of because of the associated white matter disease. There is a wide variety of shapes accross species families, and tastes. So, looking at the different ones in a "harmless" species, you may find a particular type known to infest humans. Nearly 1000 different types of infestations are on the books, and only 50 testable, and many doctors would probably not know them. Unknown ones, we don't know how many more. Just the estimations of nematodes, varies a lot, up to 100,000 is suggested (please note that might be 40,000). This is important as they are often carried by insects, and in turn carry the bacteria associated with the disease. My personal hypothesis, is that there maybe a virus involved, maybe a phage. We have a lack of certain bacteria in my country, but tick born disease. It's possible, that the the bird louse or other may be a transmission source too, flying in with birds.

People are starting to take Lynes and morgellons as different expressions in different people, or maybe the sane disease. Mine is/was Lyme like going towards morgellons. But I only ever saw two fibers, which I discounted, as the sticky wounds can trap cotton, but a guy told me stick a microscope on thrny (?is he mistaking the bacteria) but research is showing definite non textile fibres. It is suggested that it is an immune response over time to continual infection.

I would like to voice an hypothesis, which I think resolves everything, including other controversial conditions, such as vaccination, as to why some people get it. People get it based on their genetics, specifically immune dysfunctions, and environmental/health factors. Some rare people, get these diseases and infestation bad, some going towards mild, and others don't even really notice anything until their immune system gives down, such as in old age. I noticed when I gut my immune system up, things improved, but also the pain from penetration when mostly away. I could still get them off or out of the skin, but much time, the smaller ones I couldn't feel getting in there, which was unexpected. I am unsure as to which nutritional treatment biochemicaly compensated for the genetics to do that. Molybdenum, was the last thing I needed. I know somebody else who doesn't get pain. An elderly freind of mine, with better immune system, had them longer but only now is getting skin change and them coming out. His neighbour died absolutely riddled with them, after having fully recovered from cancer. Every centremeter showed signs of an exit wound. Somebody working in a nursing home, reports many of the residents have the same lessions as I do, all over them. So, we are talking percents of the population until people get older. My own grandmother looked swollen and beat up unable to think before she died. But, I see the same skin problems I've had with this.

If you look up ICU Albendazole & Ivermectin protocol (+doxycillin and other things) for morgellons etc at curezone, you will find more info. It is one people report good results with. You can treat with antibiotics, but if the bacteria are in the worms and they are burrowed in the body and cysted, the bacteria are protected, and can break out again sometime in coming decades. So, now I'm looking fur things that will infiltrate or break cysts out to kill them, so I don't have to do maintenance doses. These are all areas the Mayo clinic can devote research too.

There is mounting physical evidence that brings the CDC research into question, which research groups on these conditions have.

The spread of these things locally can reach epidemic proportions. I see more evidence of people cleaning out thier nasal infestation in restroom sinks, and know different people with stories about it. Current research is showing more and more conditions which spontaneously happen, with parasite infestation, which I largely won't go into here. These things excrete chemicals to numb or keep wounds fresh, what waste products, I don't know. I saw a comment that said a doctor in Iran, I think, first reported it. Near Iran, a freind of mine reported that a huge amount of people are dieing of stomach cancer, and she has lost a number of relatives. They all had in common, families were required to harvest the national cotton crop under the government in Uzbekistan. So, I wonder if it's related, and if the resistance to treatment might come from what was previously done in crop fumigation in central Asia (cotton is a very insecticide intensive crop). I've actually had somebody who write done book on its origins ring me up. I know these people relate things to biological pest control methods. How true, I don't know. It's just one more voice in the mix to do science on. There is already effective treatment on the infestation side, quoted before, which includes a number of other things. But, that to me, is drastic, and a simpler solution wich didn't require monitoring, would be preferred

If you look up some sites for morgellons or lymes, you will see matching identifying photos that look hardly like the nice clean research drawings. If you look through the tree of life like hierarchy articles on Wikipedia, you will find some familiar looking life forms which don't look like lifeforms. So, doctors can pass them off as debris or something from skin. It also pays to know, that not only do insects have a number of life stages where they may possibly drastically change shape, there maybe a number of firms of the single insects, so dozens of significantly differing things might be the same insect. Again, doctors are hardly going be expected to know this to identify in office. The finals thing is, that bacteria plus nematodes (micro worms) equal food source for other insects, that are attracted. I had a variety I recorded untill I killed them off. Now, only a few left and occasional intrusion by sonsi others. One is a micro wasp that paritises other insects.

The sort of personality types who question and dismiss many things, who are robust enough not to get things, and conclude what they don't get is suspect, are part of the equation here.

You can see, it isn't simple and the questions and answers should not be either.

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@mariao

Paula:
I have this condition for about 7 or 8 years. I used to have my back covered by skin lesions. At the present time my problem is limited to my hair and scalp.

My back got cleared because I finally understood that no physician will believe me, so I created my own treatment:

-I vacuum my home every day.
-I use gloves, long sleeves and cover my hair while gardening.
-I use a lint roller in my bed, my clothes, and some times even in my back !
-Some times I wash my hair with a shampoo for dry hair mixed with antibacterial soap. At other times, I use an anti-fungal shampoo. I condition my hair with coconut oil and I leave it on my hair for about 4 minutes.
-I wash and change sheets, pajamas, etc every day.
-I comb my hair with a lice comb several times per day and for about 30 minutes. (I throw away the "look alike hair" fibers). You will notice that the fibers are tangled into your hair, they are not attached to your skin like real hair.
-I moisturize my skin using a lotion for dry skin, mixed with a triple antibiotic ointment and some drops of tea tree.
– I try not to eat sugary foods or drinks.
– I try to eat gluten free.
– I walk every day and relax.

After a year my back got clear ! I still have problems with my hair but in much lesser degree. So, I am much, much better.

I live in California. I don't know any doctor that can help me and I am afraid to be labeled "delusional".

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Hello Maria, YES the way these things weave themselves around the hair strands is frustratingly mind boggling and the hair loss is traumatic. PLEASE if you have found anything that works by now please share I thought I was over the desperation phase but it comes and goes. I have recently reached out to a holistic functional medicine doctor and my follow-up is in a few days so I am hoping for the best. In the meantime I am researching all I can on what to do and trying everything I can unfortunately it all becomes so expensive that it’s nearly impossible. I have learned a lot I can share if your interested, but haven’t been doing it long enough to know if it’s working. My digestive system, intestinal issues, hair loss, extreme weight loss, brain fog and muscle pain and weakness are my biggest issues at the moment. I know the “fibers” are coming out of my GI tract as well as my head. So I have my work cut out for me. I live in Illinois and I finally solved the mystery on what my illness is, unfortunately now that I know it’s Morgellons I too have experienced the helplessness of talking with my GP along with infectious disease and gastroenterologist. Please if you can share anything with me on here or email I would be forever grateful!!!! Thank you!!!

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@shello2u

Hi Elizabeth! I will look for you at the Conference! I’m excited you are going! I wish everyone could go too. I know the financial burdens are really tough. We have lost so much but know my health is so important. I too have struggled years n years on end. It’s hard to put anger aside but unless I do I cannot proceed forward. I feel for all of us! I think the worst is that Morgellons are on my face and I used to be an esthetician & cosmetologist. That hit hards on me. :(.
Thinking of you all. We must keep fighting this horrific battle !!

PS: just a few pages of Dr Savely’s book. 😊

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THANK YOU

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@healingjourney21

Hello Maria, YES the way these things weave themselves around the hair strands is frustratingly mind boggling and the hair loss is traumatic. PLEASE if you have found anything that works by now please share I thought I was over the desperation phase but it comes and goes. I have recently reached out to a holistic functional medicine doctor and my follow-up is in a few days so I am hoping for the best. In the meantime I am researching all I can on what to do and trying everything I can unfortunately it all becomes so expensive that it’s nearly impossible. I have learned a lot I can share if your interested, but haven’t been doing it long enough to know if it’s working. My digestive system, intestinal issues, hair loss, extreme weight loss, brain fog and muscle pain and weakness are my biggest issues at the moment. I know the “fibers” are coming out of my GI tract as well as my head. So I have my work cut out for me. I live in Illinois and I finally solved the mystery on what my illness is, unfortunately now that I know it’s Morgellons I too have experienced the helplessness of talking with my GP along with infectious disease and gastroenterologist. Please if you can share anything with me on here or email I would be forever grateful!!!! Thank you!!!

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@healingjourney21 Welcome to Mayo Clinic Connect, a place to give and get support.

It sounds like Lyme's disease has caused a lot of symptoms and your quality of life is suffering. You are looking for suggestions and to connect with members for support. Members like @ste @buster69 @agi @addie11111 @kimpossible @maequinn27 @shyzen have discussed this topic in the recent past and may be of help to you.

May I ask, have you looked into places that offer sliding scales for alternative treatments such as acupuncture? Sometimes I have found that as an option by calling around.

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