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.)

My name is Kristen I have Morgellons disease. I pray for death every day I no longer have my son in my life because I'm not capable of taking care of him. I suffer everyday these demons that come out of my head crawl on me they bite me and I wear wigs so the worst part about it is they infest my wigs so no matter how many wigs I buy they just keep ruining them. I've tried getting help from everybody dermatologist, hospitals, a primary care physician, counselors, and as of lately I finally caved and when it got put on psych meds because I can't take it anymore Ed my boyfriend thinks I'm crazy and refuses to acknowledge that I'm not insane despite all of the evidence in the fibers that come out of my head that move when I pull them out of my head. I've tried every sort of cream soap and I've even looked into going to Texas to get treated by The Cure Magnet… I just survived I can't really hold a job anymore. Have no money and I'm kind of losing hope… feel like crap all the time. Used to be beautiful Morgellons disease is consuming my entire body. I know I was infected on purpose I know the government to this to me and I know that this was intentional and I hope every single government official rots in hell. God bless you all I pray for you everyday.

Liked by TIhoustonTX2

REPLY
@basslakeview

That's great. I'm so happy for you.

Do you mind me asking your age? (If you do, just don't answer me.) I will understand. I am 72 and ready to go to my forever home with my son and the rest of my family, but as long as I've alive I will keep on trying. I did try suicide last September (first and last time, promise)!!! I have been depressed ever since 1991 when I got Lyme Disease and Rocky Mountain Spotted Fever, lost my left kidney in 1999, then my gallbladder in 2004. But when my only child died I lost him and my mind. It has been a never ending battle with myself. ever since that day in 2013. Next month will be 6 years 2013 – 2019. Cannot believe I made it this long.

My husband's death was a blessing. He was so very ready to go, and I can understand exactly how he felt. So sick and very tired of being sick and tired ALL THE TIME.

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Hi beautiful lady!! It’s Shelly! I replied to your email by answering your email but it came back to me:/ I can take pics of my response if that works for you 🙂
Let me know!
Thanks!

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@kristinsolovy

My name is Kristen I have Morgellons disease. I pray for death every day I no longer have my son in my life because I'm not capable of taking care of him. I suffer everyday these demons that come out of my head crawl on me they bite me and I wear wigs so the worst part about it is they infest my wigs so no matter how many wigs I buy they just keep ruining them. I've tried getting help from everybody dermatologist, hospitals, a primary care physician, counselors, and as of lately I finally caved and when it got put on psych meds because I can't take it anymore Ed my boyfriend thinks I'm crazy and refuses to acknowledge that I'm not insane despite all of the evidence in the fibers that come out of my head that move when I pull them out of my head. I've tried every sort of cream soap and I've even looked into going to Texas to get treated by The Cure Magnet… I just survived I can't really hold a job anymore. Have no money and I'm kind of losing hope… feel like crap all the time. Used to be beautiful Morgellons disease is consuming my entire body. I know I was infected on purpose I know the government to this to me and I know that this was intentional and I hope every single government official rots in hell. God bless you all I pray for you everyday.

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I’m so sorry. All I can say is what I have said a number of times on this site. I came to this site because of my experience which was the same as yours. I remember getting rid of everything in my bedroom and screaming out those fin squirrel mange (we had both squirrels and birds in our attic). I freakin slept on a blow up mattress for 3 years (I don’t think that helped only added to my discomfort ). My husband was furious especially because nothing was bothering him. I remember screaming at him it was because they don’t fin like him haha. But that in itself is good for thought. I was the only one experiencing this. I didn’t get a wig and have read someone saying the similar as you. I went to a wig expert though and she took one look at my head and said omg you can’t put a wig on that it’s too inflamed and you appear so uncomfortable that you won’t be able to keep it on it. She was right and that’s why I didn’t take pictures. I didn’t have to it was obvious and I didn’t want those memories. Also the issues people are speaking of with an unknown creature I cannot say wholehearted that it isn’t that too but I do believe one can get Secondary problems because of the infection(s). For instance, several years ago I was uncomfortable as usual at work. Went out side for a break. As I was scratching tons of spider mites were falling in my lap. Initially I was freaked but then I was like oh good they must of laid eggs in a wound and went dormant during the winter. I can kill this. Went home researched it and was like crap it has nothing to do with that. Next day I learned the person in the cubical next to mine had a plant that was infested with spider mites. I found that insects loved me especially my head. I hate to even say this because I my intention is not to scare anyone. My experience with this was beyond horrible and I think the infection makes one susceptible to other issues (to say the least in my experience). Heck I used to get ID reactions (rashes) that even dermatologist agreed it was ID reaction although we didn’t agree upon the source of it. For instance, I blow dried my head upside down towards my stomach while only wearing a bra and underwear. My whole stomach broke out in red welts within 1/2 hour and lasted for weeks. Needless to say I never did that again. And it never happend again. Go figure. On that note though, I’m glad you did seek help from a doctor(s). I do think it is important to go and even if they dismiss you you at least have record from that account and other things hopefully is ruled out ( that’s my opinion).
There is a guy too online Richard something or other selling a debriding soap and diet. Some I’ve read say they followed his advice and it worked. The stuff did nothing for me actually I felt other safe things worked better. Again in my experience only but I read his book etc.
Some things that are safe that might help that I did (cause I don’t want people doing unsafe things that didn’t help me anyway) is a Roller tape, Dish detergent with epson salt in it, you can spray it to mixed in a water bottle on items, spray windex on solid surfaces etc, a cup of bleach in tub (it’s good for MRSA). Tea tree is so soothing to me and I use it to date. BUT nothing at all that I did (including an Ozone vaporizer which is good for mold etc ) ever made me feel much better. Seeking help from a LYME LITERATE DOCTOR was the best thing I’ve done. I can’t stress that anymore than I have!!!

REPLY
@kristinsolovy

My name is Kristen I have Morgellons disease. I pray for death every day I no longer have my son in my life because I'm not capable of taking care of him. I suffer everyday these demons that come out of my head crawl on me they bite me and I wear wigs so the worst part about it is they infest my wigs so no matter how many wigs I buy they just keep ruining them. I've tried getting help from everybody dermatologist, hospitals, a primary care physician, counselors, and as of lately I finally caved and when it got put on psych meds because I can't take it anymore Ed my boyfriend thinks I'm crazy and refuses to acknowledge that I'm not insane despite all of the evidence in the fibers that come out of my head that move when I pull them out of my head. I've tried every sort of cream soap and I've even looked into going to Texas to get treated by The Cure Magnet… I just survived I can't really hold a job anymore. Have no money and I'm kind of losing hope… feel like crap all the time. Used to be beautiful Morgellons disease is consuming my entire body. I know I was infected on purpose I know the government to this to me and I know that this was intentional and I hope every single government official rots in hell. God bless you all I pray for you everyday.

Jump to this post

Hi @kristinsolovy please note that I removed your personal email address. Keep in mind that Connect is a public forum and we don't want you getting unwanted spam. To share personal contact information safely, please use the private message function.

@shello2u, to post to the community, simply click VIEW & REPLY in the email notification. You can also upload images with your message.

Liked by TIhoustonTX2

REPLY
@shelby99

I’m so sorry. All I can say is what I have said a number of times on this site. I came to this site because of my experience which was the same as yours. I remember getting rid of everything in my bedroom and screaming out those fin squirrel mange (we had both squirrels and birds in our attic). I freakin slept on a blow up mattress for 3 years (I don’t think that helped only added to my discomfort ). My husband was furious especially because nothing was bothering him. I remember screaming at him it was because they don’t fin like him haha. But that in itself is good for thought. I was the only one experiencing this. I didn’t get a wig and have read someone saying the similar as you. I went to a wig expert though and she took one look at my head and said omg you can’t put a wig on that it’s too inflamed and you appear so uncomfortable that you won’t be able to keep it on it. She was right and that’s why I didn’t take pictures. I didn’t have to it was obvious and I didn’t want those memories. Also the issues people are speaking of with an unknown creature I cannot say wholehearted that it isn’t that too but I do believe one can get Secondary problems because of the infection(s). For instance, several years ago I was uncomfortable as usual at work. Went out side for a break. As I was scratching tons of spider mites were falling in my lap. Initially I was freaked but then I was like oh good they must of laid eggs in a wound and went dormant during the winter. I can kill this. Went home researched it and was like crap it has nothing to do with that. Next day I learned the person in the cubical next to mine had a plant that was infested with spider mites. I found that insects loved me especially my head. I hate to even say this because I my intention is not to scare anyone. My experience with this was beyond horrible and I think the infection makes one susceptible to other issues (to say the least in my experience). Heck I used to get ID reactions (rashes) that even dermatologist agreed it was ID reaction although we didn’t agree upon the source of it. For instance, I blow dried my head upside down towards my stomach while only wearing a bra and underwear. My whole stomach broke out in red welts within 1/2 hour and lasted for weeks. Needless to say I never did that again. And it never happend again. Go figure. On that note though, I’m glad you did seek help from a doctor(s). I do think it is important to go and even if they dismiss you you at least have record from that account and other things hopefully is ruled out ( that’s my opinion).
There is a guy too online Richard something or other selling a debriding soap and diet. Some I’ve read say they followed his advice and it worked. The stuff did nothing for me actually I felt other safe things worked better. Again in my experience only but I read his book etc.
Some things that are safe that might help that I did (cause I don’t want people doing unsafe things that didn’t help me anyway) is a Roller tape, Dish detergent with epson salt in it, you can spray it to mixed in a water bottle on items, spray windex on solid surfaces etc, a cup of bleach in tub (it’s good for MRSA). Tea tree is so soothing to me and I use it to date. BUT nothing at all that I did (including an Ozone vaporizer which is good for mold etc ) ever made me feel much better. Seeking help from a LYME LITERATE DOCTOR was the best thing I’ve done. I can’t stress that anymore than I have!!!

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Sorry I can’t see what I write too well in this small box and I don’t want to come off harsh either. I’m just angry from what I had gone through and hope others have a better chance than I did with this. Seek help from a Lyme literate doctor. Its at the very least worth the try. It was very worth it to me. I have a lot of problems because of all of this but I am not tearing myself to shreds every second, not crying hysterically daily, not viewing death as a freedom, etc etc.etc. I’m so sorry for your pain. I know I lived it for a very long time. That’s why I keep saying this over and over again. Lyme literate doctor!!!

Liked by desi1, shello2u

REPLY

I have one more question, and I apologize if this has been addressed…. has anyone else been in the “slime phase” of morgellons? Have you found anything particularly helpful? I’m wondering if there is something to the “slime mold” / protozoan infection theory, and if so, it would explain why antibiotics only address part of the problem.

REPLY
@thurst

I have one more question, and I apologize if this has been addressed…. has anyone else been in the “slime phase” of morgellons? Have you found anything particularly helpful? I’m wondering if there is something to the “slime mold” / protozoan infection theory, and if so, it would explain why antibiotics only address part of the problem.

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Yes I totally have the slime “ick” but all part of it. I really recommend Dr Ginger Savelys book and also her website as well as the CEHMF (Charles E Holman Morgellons Foundation) website. AND GingerSavely.com. Her website has many resources n links. I still put her name in on YouTube. Many to watch with her as the guest talking about Morgellons. I’m a patient of hers and started her protocol mid January. I’m n the “it get worse before better stage”! Highly normal but not fun. Are you in Texas?
Oh and I’m new too so I know it’s hard to know if it’s been addressed. I’m glad you asked.
Also that is why the protocol includes 2-3 antibiotics 1-2 antiparisitics etc to catch the bacteria in different stages since they hide and morph constantly to hide from antibiotics etc. It’s a slow n long process and it’s really tough I’m only in month 2.
Hang in there.
I’ll look for the slime section and get back to you. 🙂

Liked by shelby99

REPLY
@shelby99

Sorry I can’t see what I write too well in this small box and I don’t want to come off harsh either. I’m just angry from what I had gone through and hope others have a better chance than I did with this. Seek help from a Lyme literate doctor. Its at the very least worth the try. It was very worth it to me. I have a lot of problems because of all of this but I am not tearing myself to shreds every second, not crying hysterically daily, not viewing death as a freedom, etc etc.etc. I’m so sorry for your pain. I know I lived it for a very long time. That’s why I keep saying this over and over again. Lyme literate doctor!!!

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@shelby99, you mention that you find it hard to write in the small box available for typing messages. You can expand the size of the box:
1. Place your cursor on the bottom right corner.
2. Click and drag the box to the size that is right for you.

On a mobile device, you can expand the box by using 2 fingers (or thumbs) and pulling in opposite directions. (It's easier to do than to describe. 😉

REPLY
@shelby99

Hi Elizabeth
I was thinking of you since I just got my script from a compound pharmacy. I also take low dose naltrexone which can only be obtained via a compound pharmacy. At any rate, it always comes with a pamphlet. The pharmacy has a lot of items that are stated to be their top 6 Lyme/ mold disease formulations. It’s not antibiotics and I know you have kidney issues. I’d love to get the pamphlet to you so maybe you could show your doctor and see if it’s ok for you.

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Hi Elizabeth
I private messaged you. Not sure if it went through but I have the pamphlet I get from the compound pharmacy my Lyme doctor prescribes through. Not sure how I to get it to you

REPLY
@colleenyoung

@shelby99, you mention that you find it hard to write in the small box available for typing messages. You can expand the size of the box:
1. Place your cursor on the bottom right corner.
2. Click and drag the box to the size that is right for you.

On a mobile device, you can expand the box by using 2 fingers (or thumbs) and pulling in opposite directions. (It's easier to do than to describe. 😉

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Thank you. I use my iPhone and that helped!! I real need a tv sized one for me to see haha. That the other issue my eye has taken a toll too with M.

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@shelby99

Thank you. I use my iPhone and that helped!! I real need a tv sized one for me to see haha. That the other issue my eye has taken a toll too with M.

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Me too !! 👀

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In reply to @shello2u "Me too !! 👀" + (show)
@shello2u

Me too !! 👀

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I’m so glad you did your homework and went to the top dog for treatment. I got her book like the week it came out in 2016. I needed to live out in that area back in the day. I’m assuming you were able to navigate and get treatment while you were in the initial stages of this? ( I hope)

REPLY
@mariao

You are going to be OK ! We are all going to be OK! We are all in the same boat. We know that we are not delusional and we are surviving !
I guess as time passes by more people are going to be affected, including dermatologists and CDC investigators, so they will have to pay attention to Morgellons!
I just want to ask a question to everybody: Has anybody tried a room air purifier or air-sanitizer? I want to buy one. However, are expensive. So, I was just wondering if anybody has tried a room purified or an air sanitizer.
I hear that some rooms purifiers kill mold/fungus spores, viruses, bacteria, mites, germs, etc.

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Thanks but my children are affected. Not just me. This is painful for me but they are progressing with symptoms.

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@shelby99

I’m sorry if I was abrupt and didn’t answer all of your questions. My experience was absolutely the most horrible thing I’d ever imagine and I can relate to some of the things you’ve said and could add but I don’t think that’s going to help you. Yes I felt the same way about getting down to the scalp and reason I shaved it. Maybe it helped a little idk. To do it was horrifying too and that’s why I said what I said. My goal was to be helpful. I don’t want to scare anyone because of my experience. I still get the crawlies- everyday and often but not constantly I have extremely good hygiene which is a pain because I’m so tired all the time that the last thing I want to do is wash my head and body. I use salicyl acid acid shampoo and add epson salt to it. I use tea tree a lot too. But I must say the thing that helped me the most is seeking treatment from a Lyme literate doctor. My sanity will be shot for the rest of my life and I’ll probably never feel safe in this country but I’m sleeping better and not in hysterical tears daily. I don’t have much of a life but I got this far. I don’t want anyone else to be suicidal because of this disease and the lack of help by conventional medicine. If you think you can beat this on your own than you have my blessing. I hope you can but always remember you have other options (Lyme literate doctor).

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@shelby99
Thank you for your replies and sorry it took so long to get back to you but I do believe I have had a pretty horrifying couple of days. I am taking everything you say into consideration I just need to hear it I guess from someone who's been there and done that as you have. Sparing the details of my freakish last couple of days my sanity is definitely at its tipping point. The thing I didn't mention is I also can't really afford to seek treatment as I've spent pretty close to our life savings on all of the protocols and things I'm sure you know all about buying a new place to live which was very short-sighted of me as I did not really know that newly manufactured homes often times have a case of the heebie-jeebies themselves. Not an ally my wife has told me numerous times to find a doctor a line literate doctor even though she's worked in the same hospital for 10 years and knows nobody LOL funny to me but I'm going to contact the Charles e Holman foundation and see if they can recommend anybody out here in San Diego. I think I am going to go ahead and shave my head and not because I think it'll make it better but because my hair is trying to kill me LOL I do have a sense of humor I have to anybody would have to but just an hour ago it tried to take my left eye out "AGAIN" AND THAT'S MY LAST STRAW no pun intended. I just don't I just want some relief from my hair moving and poking and cracking and popping and all the crazy shit it does. Again thank you so so much for your responses if you person that hasbeen dealing with this for as long as you have and have tried all the protocols and all the medications and still in the end ended up seeking treatment from a doctor I'm going to try and save myself those seven years it's been about a year for me now of symptoms after kind of recognizing but I think I've had it much longer. Thanks again

REPLY
@mariao

You are going to be OK ! We are all going to be OK! We are all in the same boat. We know that we are not delusional and we are surviving !
I guess as time passes by more people are going to be affected, including dermatologists and CDC investigators, so they will have to pay attention to Morgellons!
I just want to ask a question to everybody: Has anybody tried a room air purifier or air-sanitizer? I want to buy one. However, are expensive. So, I was just wondering if anybody has tried a room purified or an air sanitizer.
I hear that some rooms purifiers kill mold/fungus spores, viruses, bacteria, mites, germs, etc.

Jump to this post

@mariao
We had to HEPA filter air purifiers and it didn't make any difference are air quality test came back the same before and after but that doesn't mean someone else may have had a different experience. I have spoke with somebody who is in I guess you say remission or isn't affected as bad by the disease anymore and he swears by an ozone generator. California well not allow me to have one delivered here is the only reason I have not got one yet. So I guess there's two answers depending on what kind of air purifier looking for my suggestion is to research ozone generators and anything from the government or medical world may say don't make a difference because they aren't expensive expensive and they do the job 4 certain things. I totally believe that they help in this situation. Ozonated water ozonated olive oil I've read about both of those being a big benefit health-wise but have no personal experience to speak on.

Liked by TIhoustonTX2

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