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.)

@gardeningjunkie

You photos are amazing. If these flecks could be collected for examination by a lab you would get answers. It could be a parasite or just just sloughed skin. Even dandruff flakes and floats off, I know because I need to clean around my husbands office chair upsholstered with dark leather and has black handles, easy to see as the dandruff is white. Also if not a parasite living externally but a bacteria similar to Lyme disease inside your skin which causes waste particles to be erupted from your cells. The article I read about this strand forming form of bacteria said the waste was made up of collagen and something else, but it was a shiny matter. As clear as these flecks are it does seem they would be easy to capture if you laid on plastic for a few hours, either combing hair or running hands through your hair and then the samples could be gathered. Perhaps try doing this, read a book or watch TV, and then see if you can get photos of the particles.
When others talk about things they can't see and don't understand I always think of man believing the world was flat. Common sense right? That is all we could comprehend with our limited knowledge.

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Yes, I agree. It could be something simple and I hope it is. The thing is, I think I am just tired. I wish I could simply stick my head in the sand and be oblivious to everything around me or that God would just take me home so I can rest with no worries. Ah, that sounds so wonderful!

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@barbarn

Elizabeth – I do believe you. My husband has suffered with some kind of skin malady for a decade now and I did investigate Morgellons back when his malady began, am sure there is much more and better information now. We did go thru 2 years of h*** during topical steroid withdrawal – that's a whole different story, but also one which many drs – even allergists and dermatologist do not believe and refuse to work with you. I thought I could find the dr who has begun a program to study Morgellons, but that was several years ago … I'll keep looking. In the meantime – Godspeed for us all.

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@barbarn
I found a doctor in Houston back in the mid 90s. I lived in northeast Texas (Longview) and drove 4-1/2 hours each way to see her.

Where do you live? Not a physical address. Just an area.

I met her and used her expertise at the time since no one else knew anything about fibromyalgia and chronic fatigue in the mid 90s. After going to almost every neurologist between Shreveport, La. and Dallas, Tx. she was a God send. I moved to her area in March 2018 and have re-established a patient/doctor relationship again.

I went to her about my scalp/skin issues (Morgellons), but to my surprise (and hers I might add) they found another issue, "Lyme Disease". After 7 vials of blood and other tests such as an EEG, it turns out that intead of the flu (I thought I had in 1991) it was Rocky Mountain Spotted Fever. She said I was very lucky. A lot of people have died from the fever. I will never forget that winter. I had NEVER had the flu before. I thought I was literally dying! I wondered, how do people go through this? I've known some who have had the flu many times.
Because of the severity, Morgellons got put on the "back burner." (Just for a little while.) But it is still a parasite disorder so maybe by treating the Lyme, it will also help the Morgellons. That's the only new thing so far with me. I am still on the King's Diet for Morgellons, however, and I have lost 12 pounds so far…YAY!! I am still using other Nature's Gift products to help.
God bless and best wishes for an answer soon.
Elizabeth

Liked by toomanyoars

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@basslakeview

@barbarn
I found a doctor in Houston back in the mid 90s. I lived in northeast Texas (Longview) and drove 4-1/2 hours each way to see her.

Where do you live? Not a physical address. Just an area.

I met her and used her expertise at the time since no one else knew anything about fibromyalgia and chronic fatigue in the mid 90s. After going to almost every neurologist between Shreveport, La. and Dallas, Tx. she was a God send. I moved to her area in March 2018 and have re-established a patient/doctor relationship again.

I went to her about my scalp/skin issues (Morgellons), but to my surprise (and hers I might add) they found another issue, "Lyme Disease". After 7 vials of blood and other tests such as an EEG, it turns out that intead of the flu (I thought I had in 1991) it was Rocky Mountain Spotted Fever. She said I was very lucky. A lot of people have died from the fever. I will never forget that winter. I had NEVER had the flu before. I thought I was literally dying! I wondered, how do people go through this? I've known some who have had the flu many times.
Because of the severity, Morgellons got put on the "back burner." (Just for a little while.) But it is still a parasite disorder so maybe by treating the Lyme, it will also help the Morgellons. That's the only new thing so far with me. I am still on the King's Diet for Morgellons, however, and I have lost 12 pounds so far…YAY!! I am still using other Nature's Gift products to help.
God bless and best wishes for an answer soon.
Elizabeth

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You are one tough cookie, going through hell and still persevering. Please keep at it and keep us posted on your (successful) progress.

Liked by basslakeview

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@jennybay
I really am not that 'tough cookie' you think I am, honestly, I've thought about the "S" word, but who hasn't in really tough situations? Thank you for your concern. I wish the best for your situation, too. Life is hard for some of us, but then you add in old age to the illnesses, and it's close to unbearable.
Take care and give yourself a hug.🤗

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@mariao

The problem with this condition is that there is not medical help. People suffering from this condition are considered delusional.
What most people do is the following:
-Use a lice comb two or three times per day. Keep the lice comb in a glass of vinegar.
-Wash and change sheets every day.
-Vacuum every day not only floors, also love seats, sofas, etc.
-Wash hair mixing a shampoo for dry hair with a little bit of anti-bacterial soap.
-Apply a body lotion for dry skin mixed with a little bit of an antibiotic and anti-fungal lotion.
-Use gloves for gardening.
-Lower sugar consumption. (bugs love sugar).

Some investigators that know that we are not delusional, are thinking that Morgellons is related to "Borrelial dermatitis" that affects cattle and wild animals and could be transmitted to dogs and humans by fertilizing with manure or by touching wild animals, etc. As a matter of fact, some physicians found borrelia spirochette infection in patients affected with Morgellons.
The problem is that most physicians think is delusional, so finding a good physician is important

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@mariao
…and as I just found out a week ago, it turns out instead of the "flu" I thought I had in 1991, it was "Rocky Mountain Spotted Fever" which means I now have had for over 20 years, "Lyme Disease". She is treating me for that as I write this. There are blood tests that confirm the findings. It isn't just an educated guess which makes me feel better. She also did an EEG, a Small Fiber Neuropathy Scan and other tests that confirmed the diagnosis more. The first treatment is Doxycycline Hyclate 100 mg. twice a day. My Rx bottle says partial refill so not sure how long I take this antibiotic. I go back in mid-November to see her.

Best wishes for you and keep me posted on your condition as well. Please!
Elizabeth

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@numbskull

Elizabeth, I'm so glad that you are going to take what was prescribed you. I do believe it will help you, but you need to take it as prescribed and not just when you want. Take it even if you think you're getting better. Please do not self medicate. I've seen what my sister has done to herself in attempts to rid herself of bugs. She has used toxic horse cream and other harmful toxic agents that have left scars all over her body. She has even gone as far as convincing her PCP to prescribe a pesticide. Please do not go that route. If you are feeling no one will listen or help you please seek out a therapist or psychologist. This doesn't mean it is all in your head, but talking things out with a good therapist can help you grow and understand yourself and others. I believe you can heal from what is afflicting you weather it is Morgellons or not but it won't be an easy road. I would suggest that you start with the doctor that prescribed you the “psychotic-type” drug. Thank you for your compliments. I have found that reaching out to help others has helped me with my own health. I have been diagnosed with trigeminal neuralgia and possible parkinson's. I still am hoping that I too can find some relief from my health conditions. wishing us peace from what ails us. Sharon

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@numbskull
Sharon, just an FYI. I posted an uodate today you might be interested in reading it…
Best to you, Elizabeth

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@basslakeview

@numbskull
Sharon, just an FYI. I posted an uodate today you might be interested in reading it…
Best to you, Elizabeth

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@basslakeview so glad you have a diagnosis! 20 years is a long time to go with not knowing.

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@basslakeview

@mariao
…and as I just found out a week ago, it turns out instead of the "flu" I thought I had in 1991, it was "Rocky Mountain Spotted Fever" which means I now have had for over 20 years, "Lyme Disease". She is treating me for that as I write this. There are blood tests that confirm the findings. It isn't just an educated guess which makes me feel better. She also did an EEG, a Small Fiber Neuropathy Scan and other tests that confirmed the diagnosis more. The first treatment is Doxycycline Hyclate 100 mg. twice a day. My Rx bottle says partial refill so not sure how long I take this antibiotic. I go back in mid-November to see her.

Best wishes for you and keep me posted on your condition as well. Please!
Elizabeth

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@basslakeview as they say, “better late than never” and that sure applies to discovering you have Lyme. It’s such an insidious condition. I know a number of people who have it. There is a specialist in Lyme Disease somewhere around here, I think in MA, and it takes many months to get an appointment with her. Of course around here it can be a fairly large problem, particularly if you live in the coastal areas. It was first diagnosed in Lyme, CT. My husband’s daughter has had it, as has her daughter, and a number of other people I know.
I hope the diagnosis leads to treatments that give you relief.
JK

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@basslakeview

To: gardenjunkie (in answer to your inquiry)

Use the ORIGINAL photo, look closely at it, and zoom in on the white dot. That's how I saw it.

I almost deleted the photograph because I couldn't see anything of significance, then there was a minute white dot on the right side of the photo so I enlarged it and that is what I saw.

No altering done, honestly!! I'm not saying what it is because I don't know, but thought it was interesting enough to post. Maybe someone else knows and will post a scientific response…NOT an alien science fiction one!
Elizabeth

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@basslakeview

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Oh my goodness Elizabeth I have just been catching up on your posts …..I am so pleased that you now have an answer and can at least feel that you are moving on to better health……all,the luck in the world Beryl

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Please trust me when I tell you this. I suffered for a year before I found a woman who had successfully analyzed two samples causing this. First, there was a skin fungus that was causing the burning, stinging, skin lesions, etc. This fungus attracted fungus eating insects that usually don’t interact with humans. Go to:
Stopskinmites.com to see the evidence and get directions for collecting specimens. This is the only thing that gave me relief after spending thousands trying to clear my skin.

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I’m sorry but you definitely have Morgellons. I’d be happy to share some factual, scientific information with you if you’d like. You are not delusional.

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@basslakeview

@mariao
…and as I just found out a week ago, it turns out instead of the "flu" I thought I had in 1991, it was "Rocky Mountain Spotted Fever" which means I now have had for over 20 years, "Lyme Disease". She is treating me for that as I write this. There are blood tests that confirm the findings. It isn't just an educated guess which makes me feel better. She also did an EEG, a Small Fiber Neuropathy Scan and other tests that confirmed the diagnosis more. The first treatment is Doxycycline Hyclate 100 mg. twice a day. My Rx bottle says partial refill so not sure how long I take this antibiotic. I go back in mid-November to see her.

Best wishes for you and keep me posted on your condition as well. Please!
Elizabeth

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I’m new to this group as I have been searching for answers to identify the infestations that I have been experiencing for 7 years now and the mysterious feeling that ‘something’ like insects were periodically dropping on my head. The pain and suffering that i’ve had to endure, was even more than a highly resilient person could handle and in October 2015, I took my life. I was found and resuscitated (obviously) and every year since, my poor loving cat and I have had to go through rounds and rounds of infestation hell. This year the infestation started in March and by May, we had to leave the apartment and live with the homeless here in San Francisco for 3 weeks. I noticed that residual ‘insects’ (or possibly parasites from all the research I found that had similar blue and red threads) were in/on my clothes, tent, sleeping gear, slacks, etc. They continued to bite both Joy, my cat and me and it was very upsetting. So we returned to the apartment at the strong urging of friends and the biting and stinging we thought we left behind had not stopped, but slowed down a bit. Then about a month ago, I started noticing the infestation was starting to cycle up again, but also the amount of vacuuming I was doing had increased substantially (I would vacuum and then mop 4 times a day) to 5 then 6 times. I also used a highly sticky roller (3M) afterwards and it would pick up the residual ‘bugs, etc). Then my bed blanket would fill up with ‘insects’ and I would only use the sticky roller. Then one day after making my bed with fresh sheets and a washed blanket, within one hour, I had to use 5 sticky sheets to get everything off the blanket. I decided to see what all that debris was so I had just purchased a digital microscope (no more magnifying glass) and when I saw every little tiny speck on the sticky sheet, I was stunned at these horrific ‘creatures’ that had been falling from my ceiling and all along I have been treating them as insects and no wonder nothing happened. These ‘creatures’ look practically the same as the ones I saw from you. Then I checked my popcorn ceiling and noticed there were these camouflaged nodules that we’re slightly a brighter white than the rest. Well, after examining them and taking photos daily, they had either expanded or contracted and some eventually exploded. And I have confirmed that these ‘creatures’ are found inside these nodules (reproducing perhaps) and releasing at some point either downward on me or to spread out across the ceiling. With your pictures compared to mine, I believe I have been exposed to Morgellon’s Disease and continue to be so long as I reside in the same apartment. I do not have any of the symptoms yet other than an occasional skin opening, itching, stinging and the red & blue threads beneath my skin (sadly Joy has them also and the biting/stinging is so painful to her, it breaks my heart to hear her wailing). You mentioned quite a bit about your scalp. Perhaps the ceiling is partly to blame? I also took the sticky roller for a spin all over my ceiling and it proved that the ceiling was the origination source of those threads, not my body or my cat or my carpet, shirt, etc. that healthcare providers seem to give full credibility too instead of the poor Morgellon ‘victim’ in some comments I read online.
I hope i’ve opened a door for you. Let me know if your progress. I’ll post some pictures sometime tomorrow. It time for me to give Joy her time. Cheers,
Greg

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@ked1324, @shellyf and @gregcuratolo– Welcome to Mayo Clinic Connect. Thank you for posting and sharing information with the group. Greg, I'm sorry to hear about your recent matter and having to leave your home. Does anyone else in your building have the same symptoms or problems?

@ked1324– what factual, scientific information would you like to share with the group?

@basslakeview, I was so happy to read that you finally have a diagnosis. I hope with being properly diagnosed your symptoms subside. Please keep us updated. 🙂

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@jamienolson

@ked1324, @shellyf and @gregcuratolo– Welcome to Mayo Clinic Connect. Thank you for posting and sharing information with the group. Greg, I'm sorry to hear about your recent matter and having to leave your home. Does anyone else in your building have the same symptoms or problems?

@ked1324– what factual, scientific information would you like to share with the group?

@basslakeview, I was so happy to read that you finally have a diagnosis. I hope with being properly diagnosed your symptoms subside. Please keep us updated. 🙂

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To Elizabeth: I wish I did have an ‘official’ diagnosis, but unfortunately, I only have a partial self-diagnosis of Morgellon’s Disease which is solely based on all the information and photographs that I have collected for the past 7 years and corroborated some of it with your findings regarding Morgellon’s. There is not one healthcare provider for either human or animal health in the Bay Area, as far as I have been able to find over that period of time, from the countless number of providers (I stopped counting, the frustration was unbearable) in all areas of medical practice including General, Dermatology, Psychiatry, Veterinary, Infectious Disease, Hospital ER teams, laboratories, etc. who will go that extra step or steps needed until a true diagnosis is determined. Every provider stopped at ‘all I can do is provide you with something to minimize the itch’ and those are the providers that did not dismiss me all together. I’ve also traveled outside the Bay Area via Greyhound bus (I now know why their reputation is not very good, but I do not have a car) and sought help from the ‘highly recommended’ Davis Medical Hospital. The ER couldn’t get me out the door fast enough, saying that I should speak to my own doctor even after telling them repeatedly that my doctor and I had discussed this in detail and we both thought that ‘if anyone could do something to help, it would be Davis Medical’, I was then handed a prescription for permethrin (I mentioned I had tried it twice already and it did nothing and the reply was, ‘Well, as they say, Third Time’s a Charm,’) and discharge papers which indicated I was treated for ‘itching’. (I never mentioned the word ‘itch’ once purposefully, because the problem is not itching, but tiny ‘bite mark size’ openings on my skin and at times extreme stinging pain as one might get from a photochemical defense mechanism of certain plants.) I also brought a stool specimen (properly packed) in which I had concern over some very unusual activity that I saw under a digital microscope and can be seen in a video I shot and brought with me, however, they refused to do any lab tests and referred me back to my own physician. Anyway, I could go on about all the problems I experienced just to get to this point and from what I’ve extrapolated from 7 years of documentation and research, I have a relatively good understanding as to why these problems exist, but it’s best I limit this posting to some things I’ve been able to ascertain and reproduce myself to advance this discussion. I’m not an alarmist by any means and I am known by my friends and businesses associates as a pragmatist and will try my best to view things not as they appear, but as they are when looking at the big picture, but from what I can see so far, this is showing all the dangers we were initially concerned about with HIV like transmission and mortality, but the signs are leading me to believe this problem is much worse than HIV, it is critical that if we do not change the conversation ASAP, I fear this will become a massive public health problem that will spread very quickly. As I buried all my friends who were diagnosed with HIV during the 1980’s, I now believe this problem will be the cause of my death and not HIV as I originally thought and continued to expect for 31 years now.

– causes similar issues/problems in both human and feline subjects
– problems are exacerbated when environment and/or weather conditions are damp and increase in severity with increased moisture in air.
– Use of a hand-held or upright mop steam cleaner is NOT recommended and will only make conditions worse
– source is ceiling based. This was determined by measuring the amount of debris found on my floor and on my furniture and bedding using a vacuum and followed by a wide extra sticky roller like a lint remover but has a very strong grip to hold particles securely. What used to be a weekly vacuum and dusting, is now a 4-5 times per day process followed with a sticky roller that became a necessity despite using of a very powerful Dyson vacuum first. The amount of debris per vacuum session is equal to what I had accumulated in over a week’s period 5 years ago and prior to that. I have also noticed small white nodules/nests hidden within my popcorn ceiling that continually expand/contract/break open during a major cycle. I believe from photos I took using a digital microscope (under $100 and the best investment I made yet) helped me understand some of the unknowns I would only get from using a camera and/or a magnifying glass. I can record video when there is activity and high definition photos to share with others. The sticky roller is a perfect collection tool so that the debris/remnants that are stuck to the paper can be viewed under the digital microscope.
– thread-like filaments – blue (most found), red (about 5-10% of total) sometimes black or dark green (

45E21365-89BD-48A2-88E0-614BFFFBAB2A

07C040F8-0C27-4278-A560-9B85BCEDB686

A7EF1BE2-1EF6-497D-BB0E-411697A4DBCE

bedspread PIC243b

node over sink PIC193

node over sink PIC199

node over sink PIC190

tub PIC327

49CCDC1C-A47C-45FA-8648-F389DD4E3ABB

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