The other night after a home needling session I put my creams on my face and out came 3 hair like fibers. Two of them I recognised, and the third one was very bizarre. How can a fiber from my face be wiggled at one end and the other bent on a 45 degree angle?
I lost quite a few fibers this morning after moisturising my arms and legs. Could be that I am now taking the detox herbs, started these last week. Just one a day, but who knows they could be doing something. Taking the course of antibiotics was awful and the sore on my face is still visible and no clue what it is.
The day prior to my Oncology appointment, which was yesterday, I do a small amount of research on Lymphoma. I was interested to find out there is such a thing as "follicular lymphoma". All I could think is that Morgellons is blood cancer which no one wants to know about and they will not be interested "until" what they look at under the microscope fits into their cancer label.
I am having a CAT scan on Friday to check my chest, abdomen and pelvic lymph nodes. The Oncologist said lymphadenopathy does not necessarily mean cancer. He asked me about Lyme disease and I described my disease as the infections I have ie. Borrelia, Bartonella, Mycoplasma Fermentans just to name a couple. The Oncologist said to me "you sound like you know what you're talking about".
He asked the conditions my son has, I mentioned the gene mutation the MTHFR and the Oncologist wanted to know who was taking care of this. I said it was a General Practitioner interstate....well he wasn't happy at all....he said 3 times "a general practitioner should NOT be taking care of a gene mutation". He said that we should be under the "Familial Cancer Research" with the Peter MacCallum Clinic.
www.petermac.org/research/conducting-research/familial-cancer-researchThe Oncologist wanted to know why my lymph nodes hadn't been aspirated last year. All I could say was I think a personal call on the part of the Radiologist. The Oncologist said he wants to aspirate the neck and groin nodes and put the fluid under the microscope!! yes seems only "cancer" or looking for "cancer" gets under the microscope. He then said he may excise a couple of nodes.
After having a quick look at the above link last night, I say to myself "they know what we have will eventually lead to cancer but we are treated in such a terrible way I don't have the words for it!"
We'll see what comes of the CAT Scan, and I'll follow up with this Oncologist a week Friday. I am hoping that perhaps my son and I might be heading in the right direction however grim it may be. After all the money we have spent on charlatans blowing wind up our backsides I see an Oncologist and it is bulk billed. Oh well it's only money!! grrr....
On the "grrr..." note....I came across this article on Facebook last night. A lucky find actually because I don't like reading articles, but God must have been on my side and said "read it girl!"...so I did. I am copying the entire article below and the link....not just the link on it's own, because this article written by a sufferer to me, is a must read. It says exactly how I feel and where I am in my suffering of Lyme and Morgellons. To read that "Lyme had me" long before I knew it, thinking back about how I would struggle through a work day, go home in pain and wondering what the heck was wrong with me, getting up the next day and doing it all again. All to tell myself...I did it to me, but I didn't.
The Very Ugly Truth about CHRONIC LYME If you are newly diagnosed, or among the “walking dead” for a while, you need to read this.
If you know someone who has CHRONIC LYME, you need to read this.
The Futility of the Chase
Remember when we thought getting a diagnosis was a never-ending, brutal act of futility?
Going from doctor to doctor, for years and years, just to be told it
must be in your head?
That exercise in futility is nothing compared to the chase of trying to be ‘understood’.
Trying (and failing) to be understood is exponentially more painful, because now you are talking about loved ones, not the doctors who didn’t know you.
There is a reason this topic is first; it is the one thing you can control.
If you continually try to be understood by family and friends and fail, the pain and stress will eat you alive long before an army of the bacteria will kill you.
For this reason, you must make up your mind to give up your ‘right’-and yes even your desire-to be understood.
Until this chronic illness began to steal your life away, you may have taken for granted, the need to be understood.
Certainly you never dreamed you could ever make the need to be understood-a full-blown obsession.
Before you look down on your nose at this, think about the pain of being dismissed by someone you love, or thought loved you; this is a serious blow.
In your drive to be understood, or to revalidate yourself, or to become NOT invisible, you (think) you must try again, or try differently.
The shock of your loved ones’ response alone, is so traumatic, that if it goes on for long enough-it will be difficult for you to hang on to the will to live.
NEVER in a million years would you expect your spouse to dismiss you, your pain, your fears, your emotional needs.
But, if you do not learn to let go of your ‘right’ to be understood EARLY, it will ruin every relationship that matters to you.
Unfortunately, I am afraid you will be unable to heed this warning.
The chase of trying to be understood in and of itself serves only to exacerbate your stress and make whatever the LYME is doing, MUCH WORSE.
Remember, PEOPLE WHO WANT TO UNDERSTAND will ask you probing questions.
If you are not being asked probing questions THEY DO NOT WANT TO KNOW.
It doesn’t matter who THEY are, this is a universal truth. There are no exceptions.
“How are you” is not a probing question. It is a nicety; a polite gesture and a RHETORICAL question when it is being asked of you (especially).
Context is King.
If someone has taken the time to visit you and then asks you how you are doing, you can assume they really want to know.
If you manage to be at a dinner party, you have been asked a RHETORICAL question, and you know there is no way to provide a brief answer.
You will be unable to squeeze in a book, when there is barely enough tolerance for an entire sentence.
If you try to give anything but a one-word answer, you will only find yourself talking to the wall, or the back of people’s heads (and then be the idiot who actually thought they wanted to know).
Your best option is to respond with a polite, “fine”, so they can move on to talk to the interesting people who matter. You do not.
Now that you have left ‘their world’ they don’t know where to file ‘you’ in their brains.
Literally, they do not know what to think, or how to process ‘you’.
They do not know what to think, or how to process ‘you’, because they don’t know enough about you to do so.
But you cannot make them want to know.
So, now that they have done their good deed in asking you, their responsibilities of politeness or even friendship have been fulfilled (in their eyes, and that is all that matters).
Ironically, these people find it well-mannered to ask, but not ill-mannered to have no interest in your answer.
In most cases, the superficial questions don’t matter, they really don’t.
You really don’t require the ‘world’ to know you, understand you, or care about what you are going through.
Your need will be for the people you love, to know you, understand you, and care.
It doesn’t have to be a crowd of people.
You are not looking for an audience.
Nor are you looking for pity or attention (for attention’s sake).
Obviously, you will be looking for your some of your emotional needs to be met by your family or friends, BECAUSE NO MATTER HOW HARD YOU TRY YOU WILL BE UNABLE TO-to turn off what has been built into you as a human being-TO TURN OFF YOUR EMOTIONAL NEEDS.
(No matter who asks, or demands this of you.)
Unfortunately, there is no way to prepare for what you will find, when you get to the point of needing your emotional needs met at your lowest points in life.
People you thought cared about you, will disappear from your life, some never show up at all.
People you believed would-or promised to-go the distance with you will eventually find you disgusting.
People you cared about will tell YOU that you are the CAUSE of your own problems.
Once, I was lectured to ‘choose’ happiness and that (my apparent) ‘choice’ of self-pity would not be indulged.
Not indulged; as a parent who won’t give in to the demands of the immature teen.
When you are in treatment for CHRONIC LYME, you will not be yourself.
You will be a new person who is not to be tolerated.
There is no patience; there is no hall pass.
No wonder suicide is the number one cause of death for LYME patients.
A support system is critical to survival.
Many people have a support system in place long before a chronic illness or tragedy strikes them.
Of course, they don’t build friendships with this need in mind, but over the years-most people have some kind of support system in place.
The number of people in your support system is immaterial, because even one friend can make the difference in your ability to go the distance.
The problem, however with CHRONIC LYME patients, is that it is more likely they do NOT have a support system in place, by the time they really need one.
CHRONIC LYME means you have an old, old case; it means you have gone years or decades undiagnosed and untreated.
It means that while you spent years forcing yourself to function just to get through a shower (let alone a day), extra-curricular activities and hobbies were not an option.
While you forced yourself through the bare minimum requirements for a day, you didn’t have the gas in your tank or oil in your engine to maintain anything more than (for me) one relationship.
In the meantime, you might be getting this:
If you can work, why can’t you play?
What’s wrong with you?
Why don’t you have any friends?
Little did you know that by the time CHRONIC LYME decided to kick into high gear you would find yourself without a single friend.
Little did you expect that being ‘friendless’ would be used against you to prove your mental instability.
Friendships take investments of time, and attention, and caring.
These were luxuries you could not afford to expend, because you had been living for years on fumes.
Sometimes it was pure adrenaline that got you through an event. But that is not what is seen, and not what is understood.
CHRONIC LYME had you long before you knew you had it.
Going from doctor to doctor to chase the reason why you couldn’t function normally was exhausting enough.
The futility of being in pain, but having ‘nothing wrong’ became a beating every time you heard it.
Beating your head against a wall for a decade would have been easier and cheaper than going from doctor to doctor only to send you away with misdiagnosis after misdiagnosis and prescriptions that cost you more than just dollars.
It would have been next to impossible for you to maintain relationships with the care and feeding they require, if you are the one with CHRONIC LYME.
Whether your scenario is ‘had a friend/lost a friend’, or ‘frustrated, angry husband has had-it-up-to-here’, the point is – there are no guarantees that anyone in your life will accept the challenge of being your friend.
The disease is extremely challenging, beyond complicated and extraordinarily smart.
But you are not your disease.
In my case, I live in my bedroom most of the time.
I don’t want anyone to come in and stroke my head.
I don’t need someone to stop in every day.
I don’t count the number of phone calls to determine if someone loves me.
But I do rarely get phone calls.
I used to call every member of my family.
If I didn’t call them, they didn’t call me.
Now I don’t call anyone. I admit it – I am so angry, I don’t want them to call me.
I am alone so much of the time (even though I am married), that I can go long periods of time with no human contact.
There are exceptions, I can sometimes go out.
I did have one month where I was on some medicine that I HAD to get out of the house just to walk.
I would drive to a mall; park at one end; walk the one length; and walk it back again. Then I would drive home.
I have been on a few trips even, one of them I slept on a mattress in the SUV to get there and I spent my days in beds, so I could join my husband for dinner.
Another was a flight across country to see our precious grandchild. That trip was made on pure adrenaline.
My exceptions are inconsistent however, and not something I can put a pattern to.
These details matter.
To the outside world these inconsistencies are very confusing.
“You look normal” and you can make that trip, but now you are in bed for a week and can’t make me dinner?
I believe LYME is the trickiest bug ever created.
It will give you time out of your prison, just enough to let the world see you, so it can question the validity of your illness.
People in your circle, or just outside of it, may lose their concern over your predicament because they don’t believe you are in one.
They cannot reconcile what you say versus what they see with their own eyes.
healthmojo.org/2016/01/23/the-very-ugly-truth-about-chronic-lyme/