A Little Update
by Living With Morgellons
I haven’t had a chance to update since I have been to the CEHF Morgellons Medical Conference in Texas. I got sick right after I left and with the traveling and all I have had my hands full.
I am just about on Mexican time now and decided I better write before I fully go there.
Getting to Texas from Ireland took some doing.
My flight from Belfast was delayed so of course I missed my connection to Texas from Newark.
That was lovely sitting in one of the more disgusting airports of the planet for 8 hours.
There is just not enough hand sanitizer to erase that.
I probably should have not eaten the oysters there either.
That may have been why I spent 2 hours in the airplane bathroom on my way to Texas.
That was not awesome…at all.
I looked at the time when I walked into the hotel in Texas.
Almost exactly 24 hours had passed since I walked out out of my house in Ireland.
That’s a lot of bad food, canned air, cabs and stinky toilets.
No big wonder that I picked something up.
It didn’t hit me until Sunday night.
When I flew out on Monday I knew something was brewing in my lungs.
Tuesday morning in San Diego it was getting bad and then during my 5 hour bus ride crossing the border I thought I might die (just a bit of exaggeration to add some drama).
So I went to the Dr. here in Mexico.
So far I have had 5 antibiotic injections and and still six to go.
Each morning I walk into town and the Dr jabs me in the backside and each night my camp matt feels a little thinner!
In my Lyme treatment I gave myself my injections of Rocephin for months so I could be doing this myself but I can’t.
I just can’t face giving myself another shot again.
It’s not a tiny needle they use when it has to go into the muscle.
It hurts and having the Dr do it for me makes it hurt less and also it doesn’t feel like my Lyme treatment when I was sitting in that apartment in Los Angeles taking enough medicine to take a horse down.
Though I know I am so fortunate to have received such high quality medical care, that whole experience was depressing.
My dog took the edge off it and the daily calls from London weren’t too bad either (thank you darling).
Here is where I should probably say out loud again that I am probably one of the luckiest people on the planet.
I look back over this whole experience of Lyme and Morgellons and globe trekking and now I can laugh more than I cry.
For that alone I have a lot of gratitude.
When I was very sick I was sure my rage for the Dr.s that wouldn’t treat me and people that wouldn’t believe me would make a hate in me that I would never be able to shake.
I think that would have been the the very worst casualty in this little war of my own.
Maybe because I realized this whole experience was just that.….it was my own little war and that’s why I can be happy again.
No one took anything from me so there was nothing to get back.
I will write about Mexico later and why I’m here (it’s the coconuts OK).
The CEHF 6th annual Morgellons conference was bittersweet for me.
It was my first time and I didn’t know what to expect.
I met many new people and was able to connect in real life with many that I have known online for sometime.
The first person I saw was my hotel room neighbor and she was very sick.
She was sitting outside of her room covered in lesions and sitting in that way a person in pain holds themselves.
You know the way.
You don’t look to the left or the right with a swing of the head.
You only slowly turn your whole body and your eyes do as much of the work getting to what you want to look at as possible.
She was hurting and there I saw my old self flash in my mind for a minute.
She had those bright red lesions with jagged edges and the band aids weren’t big enough to cover the worst ones.
She was smiling though.
That of course caused me to duck into the hall and try and stop the tears.
It didn’t work so I went back and hugged her.
I told her I was so sorry and we both cried.
I arrived a day early so it was good to have a day to rest.
On the morning of Saturday Randy Wymore was the first speaker.
He opened saying his whole talk would be on molecular biology.
To understand what in the world he was going on about I guess one would have to understand shotgun sequencing (and molecular biology I guess).
I don’t so I wont be talking about what he said because it is still in the air where it flew over my head.
I did see some posts saying he was comparing the DNA of certain creatures to Morgellons.
I am not sure how you do that without knowing what you’re dealing with.
I guess that’s molecular biology?
The highlights of the speakers for me were Marianne Middleveen and Eva Sapi.
By now most of you already know that Morgellons lesion material is in new lab process called Full Genome Sequencing.
In this process all DNA from everything that lives there will be revealed (including the human it came from).
The human genetic material is filtered out and then the data is interpreted.
I can imagine there is a lot of data to interpret and sift through when you consider the normal flora of human skin.
Eva said she is lucky because her husband can do this.
She is a very neat lady and her passion for the Borrelia species spills out all over the place.
She showed several micrographs and this part really impressed in my brain.
Next to each other she compared one of Morgellons lesion material and also one of a section of a erythema migrans (bulls eye) rash.
Both were crawling with Borrelia spirochetes galore!
In fact they looked exactly the same.
I didn’t see a difference between the Morgellons lesion material and the bulls eyes rash section.
Eva makes tender comments towards Borrelia in her lovely accent and I appreciate that as her passion for what she does shines so obviously.
She often calls it the “Beautiful Borrelia” as her tongue rolls the R’s.
I know that those of us with Lyme (and Morgellons) know it is no laughing matter but what Eva is a very cleverly doing is putting herself in the mind of the microbe.
She is clearly fascinated with the spirochete and all it’s morphologies and its bio-film building ability.
She showed another slide of a very close up shot of the biofilm that Borrelia built. She pointed out how it looked like it was building a city.
It really did look like a cityscape. So fascinating!
She has Lyme herself so of course her interest will be more than that of one that hasn’t suffered the ravages of it themselves.
Marianne Middleveen (microbiologist) was wonderful.
When she says she easily finds spirochetes in the Morgellons lesion material, she’s not kidding.
Like I said this wasn’t a lone Borrelia that one had to search day in and day out for.
The lesion material was crawling with Borrelia. These guys were on top of each like a pile of polywogs.
On Monday after the conference I had the pleasure of siting with her for quite a while. I asked her the question of course that has been on all our minds.
“How many Morgellons patients have you found the spirochete in”.
“All of them” (that she has looked at) she said.
At this point it is at least 15 patients and that number is sure to get higher.
Marianne explained to me that she likes a good sized lesion to culture from but has cultured the smallest tiny pink dot off of a Morgellons patient and there again it was crawling with Borrelia.
I talked with her about her own experience with Lyme Disease.
I am not privy to write about that. Not because I think it is a secret but I didn’t ask permission and that is her own medical information. I thinks it’s OK for me to say she was very ill at one point.
I actually would love for her to talk publicly about her experience with Lyme because I think it is such a typical story of how we are so sick and often misdiagnosed.
Also when I heard her words and how very sick she was, I know we have a soldier in our ranks.
It is comforting to know the lady has a scope and knows how to use it.
So this is what I liked best about the conference.
The progress and that things are moving now.
I almost forgot.
After the data from the lesion material is interpreted it goes to Dr Alan McDonald (another big hero in the lyme world).
Eva Sapi explained that he might be able to attach some of our strange symptoms to the organisms they find there.
Eva has a very open mind and when the audience asked questions alluding towards the various creatures they thought they had found in and on themselves she was clear to say that if it is there and it’s alive they would find it.
I can’t wait until the DVD comes out because I really want to listen again to the speakers.
It was a lot if info and though I tried to take notes as fast as I could it was a lot to retain.
Another thing I liked a lot about the conference was that it was good to see how well people were doing.
Both in physical health and spirit.
I saw a lot of healing. There were some there that I could see had at one point had huge lesions like I used to have. I could see the scars on some of them.
There were some I talked to that had horrific skin manifestations and I was struck how nice their skin looked now.
It gave me a lot of hope that my scarred up skin would get as nice as theirs.
My skin is doing good as far as the infection being gone but I have a ways to go before I feel like I won’t think about the scars anymore. My scars have softened and I am sure I see them as worse than they are.
I use lactic acid here and there to keep softening the scars and am happy that I’m not sick anymore.
It was good for me to meet and see others that went through some really bad skin manifestations and illness and are still on a solid road of recovery.
The internet can give a false idea that Morgellons never goes away.
Some of the people online have this notion that they are beyond help. I understand why because this infection is horrific and doesn’t seem to want to budge for a while.
The reality is that I met a lot of people that have done huge amounts of healing. The spirits were high and the research is coming.
It is a long road but it can be done.
Dr Edward Kilbane and Dr Amelia Withington gave unique perspectives. Both of them have Morgellons and are psychiatrists.
Dr Peter Mayne talked a lot about Lyme disease and how very serious it is (oh hey guess what, he has Lyme too).
I think that is something that never ceases to amaze me.
That is how the microbe can move the human.
Most of the speakers and the people that put this whole thing together have Lyme and or Morgellons themselves.
I can not finish this post without bringing up Cindy Casey.
It was so lovely to meet her in person.
The conference was a lot of work and a true success and I am so impressed as to what she has managed while being very sick herself. Thank you Cindy Casey for organizing this forum to attract the scientists and researchers that the Morgellons community so desperately needs.
I know I missed a lot but wanted to just give some highlights of what I have been up to and how the conference went.
Here’s my little camp mate. next to him I look positively radiant!