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.)

@shelby99

Thank you. That’s what I actually thought but I wanted to make sure I had the info correct. Mark my word your story will not go untold!! you lost your kidney after that too though. Right? I read that can be an outcome of not being treated appropriately. OMG. Do you know what test you took in 2018? And I take it from your last post it wasn’t the igenex. Please make sure when you get that test to do the entire panel including coinfections for Bartonella and babesia!! Please keep us updated. Also the eyes do feel like they’re infected. I understand how you feel. God bless you!!!

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Oh by the way I also had a fever of 106 in 1995. I tested positive for mono again so I was told it was a reactivated case of mono since I had already had mono once.

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I found your post and feel like you could be my twin. I also took pics of my scalp because I thought I had lice and was terrified! I have never had lice so I did treat myself for them and it cleared a little bit. But let me back up and say this all started almost a year ago around the end of July 2018. The right side of my face swelled up with a disfiguring lesion that burned sooo bad I left work early and went to my family physician. The PA I saw that day had no idea other than maybe a cyst and gave me Mupurcin ointment and eventually it got better but spread to other parts of my face and left lighter skin pigment. I also had a horrible rash on the calf of right leg. Long story short I have been to the ER twice, both times told I had a picking disorder and to stop picking. Two different dermatologists. The first barely looked at me and offered me acne medication. Insulting since I'm 51 and know what acne is. The second one treated me for folliculitis and a bad staph infection on my body. Which I did have staphylococcus, from the open wounds no doubt. I requested a lyme test by primary MD and it came back a false positive. Whatever that means. Makes no sense to me. But since my symptoms were that of Lyme I was prescribed Dicocyclime and have been on it for about 9 months now. It helped a little, but not much. Do to so much fatigue stress and brain fog I quit my job and now I have no insurance and my husband switched jobs and we are without insurance right now. So I feel hopeless. Within the last two weeks I have had a major relapse and my only hope at this point is maybe the Mayo Clinic can help me. But I am so grateful to find some validation because my family thinks I'm going crazy. I know I am not and I too believe my gut feelings. Nutrition and rest are important, but I can't really afford all the herbs I need and healthy foods. And stress just gets worse do to the financial hardship this has escalated to. How are you doing now?

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@dbbaker41

I found your post and feel like you could be my twin. I also took pics of my scalp because I thought I had lice and was terrified! I have never had lice so I did treat myself for them and it cleared a little bit. But let me back up and say this all started almost a year ago around the end of July 2018. The right side of my face swelled up with a disfiguring lesion that burned sooo bad I left work early and went to my family physician. The PA I saw that day had no idea other than maybe a cyst and gave me Mupurcin ointment and eventually it got better but spread to other parts of my face and left lighter skin pigment. I also had a horrible rash on the calf of right leg. Long story short I have been to the ER twice, both times told I had a picking disorder and to stop picking. Two different dermatologists. The first barely looked at me and offered me acne medication. Insulting since I'm 51 and know what acne is. The second one treated me for folliculitis and a bad staph infection on my body. Which I did have staphylococcus, from the open wounds no doubt. I requested a lyme test by primary MD and it came back a false positive. Whatever that means. Makes no sense to me. But since my symptoms were that of Lyme I was prescribed Dicocyclime and have been on it for about 9 months now. It helped a little, but not much. Do to so much fatigue stress and brain fog I quit my job and now I have no insurance and my husband switched jobs and we are without insurance right now. So I feel hopeless. Within the last two weeks I have had a major relapse and my only hope at this point is maybe the Mayo Clinic can help me. But I am so grateful to find some validation because my family thinks I'm going crazy. I know I am not and I too believe my gut feelings. Nutrition and rest are important, but I can't really afford all the herbs I need and healthy foods. And stress just gets worse do to the financial hardship this has escalated to. How are you doing now?

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I did not start getting much better either on doxycycline alone… it wasn’t until I met with a doctor trained to treat lyme and they added the Bartonella protocol that includes doxy+ rifampin (and I’m on 2 other antibiotics as well… tick-born bacteria and diseases have multiple phases & become resistant). You should also check your viral numbers (once your immune system locks up, everything takes over) Check B12 and if you have the MTHR gene mutation(s), take methyl B-12.

I had the same issue with it spreading rapidly on my face, burning and leaving oddly shaped white pigmentation. It also affected my eyebrows, and one side is still healing from the infected hair follicle. Everything else has healed. With no help from ANY dermatologists.

This has been the most humbling, scary (because of the unknown) and depressing experience, and I still have distance to go, but I do believe that there’s a light, and somehow, some way, this experience will serve us (but it may be way down the line 😂).

You’ll get through this, but stay proactive, try not to touch or mess with them as much as the lesions may itch, burn, feel grainy, etc. It may not be healthy, but I constantly use hand sanitizer, and if I feel my face get that hot, sticky, itchy feeling, I wipe it down quickly with hand sanitizer (because ethyl alcohol is supposed to fight biofilm) or food-grade peroxide. Use grapefruit seed extract ear drops and nose spray… grapefruit seed extract is anti-fungal and antibacterial (a lot of these infections hang out in ears and nose, even if we don’t have “infections” there. You’ve got this, but I’m sorry you have to go through it!

Liked by shelby99

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@shelby99

Oh by the way I also had a fever of 106 in 1995. I tested positive for mono again so I was told it was a reactivated case of mono since I had already had mono once.

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My igg, or “past”, mono antibodies were sky high, but I never knew I had it in the past. In fact, just about all my viral antibodies (hsv 1 & h6 igg and igm) were really high. But that’s also made me wonder what came first, the chicken or the egg 🐥🐣. Correct me if I’m wrong, but with morgellons, they don’t seem to know if some us just have the perfect storm inside of us & and are predisposed (and unluckily, exposed to tickborn disease) and the infection is ready to go nuts when triggered by illness, vaccine, stress, etc, or if this crazy infection just hammers our immune system so hard that all of our antibodies go up.

Liked by shelby99

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@basslakeview

Hello.
I went to the hotel (The Wyndhan Gardens, Austin, Tx.) My sister was going to go with, but our Aunt died. She lived in Oklahoma. (Wish I had gone to the funeral instead, but I was so excited about the conference, meeting new people who might be able to help me or point me in the right direction, etc….) I was there at the hotel and had a Panic (an Anxiety Attack). I could not do ANYTHING the morning of the conference or any other time but sleep. I stayed in bed from that first night until the next morning, tried to force myself to get dressed and go, but I couldnt so I just took medicine and went back to sleep. I ordered food up to my room because I was afraid of running in to her.
I certainly couldnt afford that hotel, and especially ordering food to the room! I wish I could have just left and gone back home that day, but I couldnt even do that. Then I stayed the second night, and then one more night. And all I could think about was the money I was spending that I could have bought myself a new pair of glasses with. My good ones broke. I tried to make the one order of food last as long as I could, then finally left Monday morning.
I was so very disgusted with myself all I could do was cry or sleep. I cried all the way home…5 hours of driving.

If someone could have been there with me, I believe they could have talked me out of it, but I was alone and useless.
I thought about calling Cindy Casey, but I knew she was busy and didnt want to bother her. Afterall, it was HER conference!!

Have you ever had one or either? I hadn't had one in a very long time. Actually, I think this was the WORST one yet.. The angrier I got at myself, the worse it got.

I wrote Cindy and apologized, and to tell her about it, even told her I would send the scholarship $$ back to her and try to pay for someone to go next year, too.

The next thing I knew, she wrote me back and was so ANGRY with me. I felt awful. I still dont know why she treated me like she did. I poured my heart out with the truth of it all (as I experienced it in my mind).

Needless to say, I didnt go to the conference.
Elizabeth Bass 🥀

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I’m so sorry Elizabeth. Number one about your aunt, and also about the conference. I’m sure she just wants you to get better, knows you want to get better & was frustrated. I do feel your pain, believe me. I came to dread family vacations, as well as any personal or professional outings. I remember going to this huge health & wellness fair with my best friend before I knew what wrong with me. That was my thing… I LOVED learning about wellness. And I never minded doing things alone. But she had a booth to work, and I was so exhausted and insecure at that point. The thought of walking into those classes, meetings and conference rooms alone overwhelmed me so much, I stayed in the hotel room almost the entire weekend (and it wasn’t even a nice room lol).

I’ve missed so much over the past few years, so now I’m more motivated than ever to keep fighting through this, because I’m tired of missing stuff, especially JOY. I’m feeling so much better most days, but I know I have to continue to address several issues until my immune system is strong enough to address them correctly.

Just don’t live with regret… let this one go, do everything in your power to do the things you know will make your life better moving forward, and on the days you just can’t, give yourself some grace ❤️. You’ve been through ALOT, but there is still lots of joy in your future.

Liked by shelby99, shello2u

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@dbbaker41

I found your post and feel like you could be my twin. I also took pics of my scalp because I thought I had lice and was terrified! I have never had lice so I did treat myself for them and it cleared a little bit. But let me back up and say this all started almost a year ago around the end of July 2018. The right side of my face swelled up with a disfiguring lesion that burned sooo bad I left work early and went to my family physician. The PA I saw that day had no idea other than maybe a cyst and gave me Mupurcin ointment and eventually it got better but spread to other parts of my face and left lighter skin pigment. I also had a horrible rash on the calf of right leg. Long story short I have been to the ER twice, both times told I had a picking disorder and to stop picking. Two different dermatologists. The first barely looked at me and offered me acne medication. Insulting since I'm 51 and know what acne is. The second one treated me for folliculitis and a bad staph infection on my body. Which I did have staphylococcus, from the open wounds no doubt. I requested a lyme test by primary MD and it came back a false positive. Whatever that means. Makes no sense to me. But since my symptoms were that of Lyme I was prescribed Dicocyclime and have been on it for about 9 months now. It helped a little, but not much. Do to so much fatigue stress and brain fog I quit my job and now I have no insurance and my husband switched jobs and we are without insurance right now. So I feel hopeless. Within the last two weeks I have had a major relapse and my only hope at this point is maybe the Mayo Clinic can help me. But I am so grateful to find some validation because my family thinks I'm going crazy. I know I am not and I too believe my gut feelings. Nutrition and rest are important, but I can't really afford all the herbs I need and healthy foods. And stress just gets worse do to the financial hardship this has escalated to. How are you doing now?

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Also, I have told others in the forum about this, but the 2 top supplements/ otc lyme treatment I’ve been using are 1.) Biocidin LSF (order on biocidin website) and 2.) The Ultimate Monolaurin (I think you can order on amazon). Biocidin LSF is a natural antibiotic & busts biofilm (big problem with lyme). My general practitioner & lyme specialist recommended these 2 items above all other OTC items (except for probiotics).

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@dbbaker41

I found your post and feel like you could be my twin. I also took pics of my scalp because I thought I had lice and was terrified! I have never had lice so I did treat myself for them and it cleared a little bit. But let me back up and say this all started almost a year ago around the end of July 2018. The right side of my face swelled up with a disfiguring lesion that burned sooo bad I left work early and went to my family physician. The PA I saw that day had no idea other than maybe a cyst and gave me Mupurcin ointment and eventually it got better but spread to other parts of my face and left lighter skin pigment. I also had a horrible rash on the calf of right leg. Long story short I have been to the ER twice, both times told I had a picking disorder and to stop picking. Two different dermatologists. The first barely looked at me and offered me acne medication. Insulting since I'm 51 and know what acne is. The second one treated me for folliculitis and a bad staph infection on my body. Which I did have staphylococcus, from the open wounds no doubt. I requested a lyme test by primary MD and it came back a false positive. Whatever that means. Makes no sense to me. But since my symptoms were that of Lyme I was prescribed Dicocyclime and have been on it for about 9 months now. It helped a little, but not much. Do to so much fatigue stress and brain fog I quit my job and now I have no insurance and my husband switched jobs and we are without insurance right now. So I feel hopeless. Within the last two weeks I have had a major relapse and my only hope at this point is maybe the Mayo Clinic can help me. But I am so grateful to find some validation because my family thinks I'm going crazy. I know I am not and I too believe my gut feelings. Nutrition and rest are important, but I can't really afford all the herbs I need and healthy foods. And stress just gets worse do to the financial hardship this has escalated to. How are you doing now?

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I think if you can order supplements (thurst recommends 2 below!!) it would be a start while you are awaiting insurance. Antibiotic without insurance are way too expensive. I’m so sorry but we certainly understand what your going through. My Morgellons symptoms started in 2009 but I went without our treatment for 7 years so my bad. You’ll have a better experience if you follow the advice of others who have obtained treatment via Lyme literate specialists. You can contact the Charles e Holman foundation for local doctors in your area. Or If you live near RI I can help you locate a good doctor.

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I know there are a lot of Mothers here, and regardless of the struggles we might be facing, I hope you all have the most blessed Mother’s Day yet!

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Liked by shelby99, shello2u

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@basslakeview

Hi, Shelby,
I thought I had the flu 27 years ago until I noticed a strange rash on my stomach. I was running about 103 degree temp and called my doctor on a Sunday before church so he met me at his clinic office, checked me over, saw the rash and made an immediate statement. "It looks like Lyme to me. "He drew blood and sent it off. It came back negative. (Maybe it was too early to take it.)
After that, when the fever went away I still had all the muscle aches and joint pain for 27 years. My doctor retired after that and went on to do other things.
I probably went to 20 doctors after that from Shreveport, La to Dallas, Jefferson, Tx, Longview, and Atlanta, Tx. A rheumatologist in Dallas said he thought it was Fibromyalgia.and Chronic Fatigue so I went with that because I was sick of seeing doctors. (Mostly rheumatologists.) I was tested for everything except Lyme.. No other doctor mentioned it until Sept 2018 in Houston after I moved here, 27 years later. The lab work came back with all kinds of RED FLAGS.
Lyme and a co-infection of RMSF (Rocky Mountain Spotted Fever).
I'm taking an antibiotic (just one) and only 3 days a week because I only have one kidney and my liver does not like the antibiotic. I'm on my second one. Doxycycline for one month was the first, and now on Clindamycin for 2 months. Does seem to be helping the joint pain maybe a little.
I am having trouble with my eyes now. I know I need cataract surgery, but there is some sort of organism in my eyes and don't want the surgery with the chance of them getting into my eyes. I read a research paper that if that happens, it can cause blindness.

I am still having some odd other things going on like Morgellons, however, I don't mention that to doctors anymore. But my opinion is the Lymes has morphed into something else because it's been so long.
Does that explain it better?
Elizabeth🥀

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Hey Elizabeth. Still hoping to hear what test you took that came up positive for Lyme and RMSF in 2018

Liked by basslakeview

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@shelby99

Hey Elizabeth. Still hoping to hear what test you took that came up positive for Lyme and RMSF in 2018

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Just a standard LabCorp Lyme Test I suppose. I didnt ask the doctor. It showed Lyme and co-infection, RMSF.

I am getting ready to send another to IGenex Lab. EVERYTHING done in that lab has to do with Lyme and its co-infections. That is all they do in that lab, and unless you have Medicare, you have to pay cash up front, then file your own insurance. Then test is done. They take credit cards. There are other tests on IGenex that are even more expensive but my doctor went with this one..

Elizabeth

Hope that helps. Mine cost $1346.00. You can go to their website and read all about it and I think there is a price list. And what kind of tests they do.

Liked by shelby99

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@thurst

I’m so sorry Elizabeth. Number one about your aunt, and also about the conference. I’m sure she just wants you to get better, knows you want to get better & was frustrated. I do feel your pain, believe me. I came to dread family vacations, as well as any personal or professional outings. I remember going to this huge health & wellness fair with my best friend before I knew what wrong with me. That was my thing… I LOVED learning about wellness. And I never minded doing things alone. But she had a booth to work, and I was so exhausted and insecure at that point. The thought of walking into those classes, meetings and conference rooms alone overwhelmed me so much, I stayed in the hotel room almost the entire weekend (and it wasn’t even a nice room lol).

I’ve missed so much over the past few years, so now I’m more motivated than ever to keep fighting through this, because I’m tired of missing stuff, especially JOY. I’m feeling so much better most days, but I know I have to continue to address several issues until my immune system is strong enough to address them correctly.

Just don’t live with regret… let this one go, do everything in your power to do the things you know will make your life better moving forward, and on the days you just can’t, give yourself some grace ❤️. You’ve been through ALOT, but there is still lots of joy in your future.

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Shelby. Thanks so much for the kind and gentle words. I needed to read that for sure. When I got Cindy's note I was mortified after all the kind words she had for me before. I didnt know what I said that made her react that way, but I certainly apologized and offered to give the money back to her and pay for someone else to go next year. I didnt know what else to do.
I had to let it go right now. I have too much on my mind right now and the conference fell the week before my only child's birthday and the day he died
. But that's life.
I thank God for it, and hope I learn from it as well.
Elizabth

Liked by shelby99

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@basslakeview

Just a standard LabCorp Lyme Test I suppose. I didnt ask the doctor. It showed Lyme and co-infection, RMSF.

I am getting ready to send another to IGenex Lab. EVERYTHING done in that lab has to do with Lyme and its co-infections. That is all they do in that lab, and unless you have Medicare, you have to pay cash up front, then file your own insurance. Then test is done. They take credit cards. There are other tests on IGenex that are even more expensive but my doctor went with this one..

Elizabeth

Hope that helps. Mine cost $1346.00. You can go to their website and read all about it and I think there is a price list. And what kind of tests they do.

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Elizabeth try to get a copy of the Labcorp test (or whatever it maybe). You should have it for your records. Also I know about the igenex I took the total test. My concern for you is I hope you took the babesia and Bartonella coinfection test. Especially babesia cause I know you said your 65 and if that is positive you need treatment especially given your age etc.

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@shelby99

Elizabeth try to get a copy of the Labcorp test (or whatever it maybe). You should have it for your records. Also I know about the igenex I took the total test. My concern for you is I hope you took the babesia and Bartonella coinfection test. Especially babesia cause I know you said your 65 and if that is positive you need treatment especially given your age etc.

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I have only kind words and hope for you doll!!

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@shelby99

Elizabeth try to get a copy of the Labcorp test (or whatever it maybe). You should have it for your records. Also I know about the igenex I took the total test. My concern for you is I hope you took the babesia and Bartonella coinfection test. Especially babesia cause I know you said your 65 and if that is positive you need treatment especially given your age etc.

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I should reiterate igenex has the babesia and Bartonella coinfection test. I don’t think your doctor included it. You should try to get that added (if anything the babesia test cause Bartonella is usually part of Morgellons treatment anyway.

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@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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I have everything thing that your experiencing times 5 ,

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