Pic is me and Ian, 2007.
Thank you. I would love to see it. I am interested in everything.
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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.
This is Elizabeth. I didnt even think about vaccines causing any of this. I don't know why i haven't, because I sometimes wonder about vaccines. I DO get a flu shot every year, a pneumonia vaccine (because my dr said I have had it about 3 times, and everytime it will get worse) and with me having asthma occasionally it would be really bad if I got pneumonia,, plus this past year i got a Shingles vaccine because I watched my dad and my sister suffer through that.
I don't know where you are living right now. I am in Texas. Texas and many other states, (and I think there is a "National" Lyme Disease Association) have a Lyme website. They (at least Texas) has some extremely useful information. So does the Charles E. Holman Morgellons Association. Lots of good helpful links in that one for sure. Dr. Savely, who is very well known for her involvement in trying to find a cure works there, too. She has written books on Morgellons. Dr. Middleveen, Veterinarian, in Canada is very much involved in the scientific research. I haven't researched to see if she has a website. I've been super busy here right now.
There is going to be a "12 Annual Morgellons Conference" in Austin, Texas on April 6-7, 2019 which I'm registered to go to. I'm so excited about meeting some of the professionals involved with Lyme and Morgellons. There is usually doctors and scientists from all over the world there, too.
The website address for the Holman Morgellons site is: http//thecehf.org . It will have many links in it. Be patient because it's a very large website with a LOT of information. The first page used to have the conference information on it with a link for the agenda, too.
You are right, in that it is almost impossible to find a doctor who will even "admit" he has even heard about Morgellons. They usually look at you with this blank stare, or change the subject real fast to something else. I had one derm PA tell me I have "parasitic psychosis" and gave me a prescription for a psychotic drug. I already knew it was coming so I wasn't surprised at all. I didn't say a word, just smiled and left the office, never to return again.
I have so many stories it's crazy. I've been dealing with this over 27 years. Since 1991. In 1999 I lost my left kidney (oncocytoma, benign), then 2004 my Gallbladder (don't remember what they told me about the reason why).
I would love to see some of your pictures. I have searched looking to find what that stuff is in my hair and on my scalp and skin. I've also found black hairs coming out of my hands. I tried pulling one out with tweezers, but never again. It hurt like crazy. I ended up putting a menthol-type hand lotion on them. When I did that they immediately broke down into tiny black & white dots. Then that mixes together and form a gray biofilm. I really think Chronic Lyme turns into Morgellons when you've had Lyme Disease for 27 years.
I would love for us to compare pictures. I took some two nights ago and couldn't believe my eyes!! Sometimes I accidentally catch something in the air behind or around my hair.
My observations exactly. I had to stop the Doxycycline because my lab work after 1 month showed that my liver and kidney didn't like it.
Be sure to get your doctor to do labs on you once a month the whole time you're taking the antibiotics or any long term drug. You don't want to end up losing your kidney or liver. That's where the drugs cycle through before excretion. I didn't know that and ended up with a tumor the size of a softball inside my left kidney. Not exaggerating. I saw the film. That was in 1999, 7 years after eating Ibuprofen like candy because the pain from the Lyme Disease was so painful. The doctor told me I could take up to 9 a day, but I don't think he realized I took him literally. Then 2004 I lost my gallbladder. Not sure why on that one.
Now I can't take ANY kind of anti-mmatory like Aleve, Àspirin, Ibuprofen, and Excedrin (which was the best one). I can take Tylenol which does nothing so I've been on Methadone after trying other Rx drugs. Methadone is the only one that doesn't make me woozy and high feeling. I had to find something that didn't mess with my brain since I had to work. Been on that since after 1999 when kidney came out.
I am also encouraged. Mine now is mostly in my scalp and hair.
But I noticed I had those strange coarse black hairs I could hardly see coming out on the top of my hands and fingers. Then a lesion. I started putting menthol hand lotion on my hands and they disappeared for a while, then yesterday noticed they are trying to come back.
I also notice as I watch everything anywhere on my body with my Note 8, 12 MP phone camera (camera is a Sony), then zoom in, to see better, there's a pattern to these things. The hair will show up through the skin. I can't just grab the tweezers and pull them out because they are part of me. It hurts a lot to try that. It looks as if they are woven in with my skin. It's a foreign thing to my body so it makes me wonder why MY BODY is now making it. That's when the hand lotion comes in, but when I do that the hairs actually break down into tiny black dots and you can see the outline of the hairs with the dots for just a little while, then the dots turn into white things, and then they seem
to gather together and turn into something else. My nickname for these particular critters I call "blackeyes", then somehow there is a biofilm being made by something. At first I thought the black hairs were involved in making the biofilm. Now, since it is a grayish color, I have another theory. I think the black dots and the white things that look like just short logs rap around the black dots (those are now the "Blackeyes"). Somehow, after those things happen then comes the biofilm. I finally got the biofilm out of my eyebrows. Now when I zoom in on my eyebrows they look normal.
I am posting a few pictures soon.
I read both of your notes on Fibromyalgia/Chronic Fatigue. I was treated for this for 27 years. Then I moved and have a new doctor. She tested me for Lyme Disease and other tick borne diseases.
All these years, as it turned out, I have had Lyme Disease and Rocky Mountain Spotted Fever.
Now, I've found out, the Lyme Disease has morphed into Morgellons Disease. The treatment is the same as for Lyme Disease, antibiotics. You may not have Lyme Disease, but if it turns out you do and you have to take antibiotics, please, AND THIS IS VERY IMPORTANT, make sure you have lab work every month you are on them to test how your liver and kidneys are doing.
Because mine morphed into Morgellons I will probably have to be on antibiotics for 2 or 3 years. Hopefully, you won't have Morgellons.
One more VERY IMPORTANT note. Do not tell your doctor you think you might have MORGELLONS. Just ask him if he will test you for Lymes Disease, otherwise, he/she will look at you and think you're crazy unless you know him personally. But, really, there is no reason to even mention Morgellons. Just ask to be tested for Lymes Disease because you read somewhere that Fibro…and Fatigue have the same symptoms as Lyme Disease.
Good Luck, God Bless,
Elizabeth. 🥀 ❣
I am so sorry to hear that you have this awful condition. I, too, am still fighting it. Unfortunately, I don't think it has anything to do with the areas we've lived in.
I've learned thru my years of research that the scientists have learned that a very high percentage of people with Morgellons also have Lyme Disease. I found out last September 2018 I've had Chronic Lyme and Rocky Mountain Spotted Fever for 20+ years according to the tests. I know EXACTLY when I came down with both of them. It was the Christmas break during 1991-1992. I had the most awful fever I've EVER experienced. I was thinking flu, but then my tummy started itching. I looked and had a spotted rash. I was living in Kilgore at the time and had a precious 10 year old boy that loved the outdoors. There is no telling where I picked up a tick bite. (We also had a dog and a cat.)
I called my church friend who is a GP MD. He met me at his clinic on a Sunday. The first thing he did was take my blood for Lyme Disease. It came back negative and way back then the labs weren't up to date on their testing for Lymes, but it could have been because it was too early. I was still running a fever.
Actually, who knows why?
The bottom line is after the fever went away, everything else stayed…the aches and pains, my joints felt to be 100 years old. Every muscle hurt, some worse than others. As time went on I finally gave up on the aching to ever stop so I had to figure out I was going to have to find out what was wrong. Over 25 years and not one doctor thought about doing another Lyme Disease test, not even me.
My sister and her husband talked me into moving to Houston, closer to them. My precious only child died. I really needed people from the year he died (2013) until I moved here (March 2018). I retired in 2014. The grief was stronger than me.
I worked all that time, but I had to work taking pain medication…..
Ibuprofen,(I was taking it like candy because the pain was awful) so bad and I had to work. In 1999 I had to have my left kidney removed, the tumor was benign, thanks to God. I had to stop taking any sort of anti-inflammatories.
They said the tumor was probably caused from s the OTC meds.
I ended up going to (it seems) every neurologists between Shreveport, Dallas, Tyler, and Jefferson. The one in Dallas said it was probably Fibromyalgia and Chronic Fatigue. Of course we know now it wasn't that at all. But, in the meantime I went to a Pain Management Specialist in Longview who started me taking all sorts of drugs, but Methadone was the only one that I could take without it making me "high" and not able to think straight.
Now, from 1991 until 2018, I finally know what is wrong with me. And, believe me, there is much, much more than what I have told you during these 27 years.
All that to just give you a little bit of my history.
I am going to give you a link or two. Go to these links and soak up as much information as you can, but the best advise is one from someone who has been through it and came out on the other side healthy.
I was blessed enough to meet someone who did just that. The things she has told me were a Godsend, literally! She said it took her 3 years on antibiotics to get rid of the Morgellons. I started in September, but I couldn't take the first one. My liver and kidney (only have one kidney, remember?) didnt like it. Just started taking another kind (Clindomycin) two a day on Monday, Wednesday, and Fridays. Then a kidney, liver blood test every month. She told me even if you're in good health with all your organs you should have blood work checked every month. You can't trust a doctor to remember everything so you need to remind them every month. Long term antibiotics can be dangerous to your health.
Keep me posted!!
Where in Virginia do you live?
UNLESS YOU KNOW THE DOCTOR PERSONALLY, DON'T MENTION YOU HAVE OR THINK YOU HAVE MORGELLONS. Don't even mention the word. Tell them you would like to be checked for Lyme Disease. It will save you a lot of heartache.
The reason I say this is because they will think you are crazy and don't listen to another thing you say.
Trust me. i've been there MANY times.
The person I told you was a friend of mine has been all through this as well, but one thing she told me is that the scientist are starting to believe Morgellons is what happens when Lyme Disease isn't treated.
Keep me posted.