Weird Blood Issues

[belle9]

Hello Y'all from the sunny south. I have had a positive ANA three times and tested positive for systemic yeast (which only my good doctor recognizes as a disease) and have had a fluctuating white blood cell count which went as low as 3.1 when I was really sick. Has anyone else had their blood do this? Anyone else asked for an ANA? I am much healthier now but still have to do hours of ablutions at night to sleep without torment by springtails and fungus. I have been diagnosed with chronic fatigue syndrome (duh) and fibromyalgia. The doctors (besides my wonderful integrative medicine specialist) are soooo puzzled by my "connective tissue disease." Too bad they can't just say it's Morgellons and treat it. Oh well..... The neuro symptoms are pretty weird too. I drop things and fall down or trip and catch myself or stagger without warning. Neurologists says the brain is all good for my age (like I should be glad it's not worse). Docs can be exasperating. Diflucan and some really good herbs and paragon and garlic (smelly kind are keeping me going.

[Bustercat]

Hi Belle9, After having the heavy duty flu four years ago, I developed a heart murrmer, chest pains, and leaky valves. The cardiologist wondered why I didn't have issues before. My blood is a hassel, keeping it in a good range with coumidin. All the other stuff is enough to work on each day without neuro problems, and lately they have been off the charts bad. I am with you comprehending all the new body disfunctional events. My mind is still alert, and I cant see why just to stand up is a hassel. Lately I stand motionless for about ten seconds on arising, it gives my brain enough time to process the messages to walk, and the balance is less of a problem. I have an evening of serious pain, for about two hours, then the angry beast quiets down. My fibers have quieted for now, I pray they stay that way.

Yes the medical proffesionals see your inability to function to be old age, and that is very destressing indeed. I allow my self, moments of meditation, that sooths my soul. Dealing with them, and all the various symptoms of this disease is overwhelming. You know its not like we can blow them off, we have to get pills, and make those office calls. Bless you on your journey, and know that someone out here completely understands.

Hi Belle and Bustercat,

This is awful. However, hope and understanding are always there, and things will not always stay so bad.

The ANA is a good blood test to have done. The results may be positive or negative, and, if positive, the titer level is important.

If the more expensive version is done, the pattern of flourescence could be helpful.

[tcmgpt13]

I am not sure how you can reassure people that understanding is always there when most often there is very little understanding shown towards those with M symptoms. In fact, more often than not, no understanding is shown at all. Are you basing your statement of things will not always stay so bad on factual information (I found your other post in a similar vain interesting yesterday and wondered about this then) or are these just the general statements of an optimist who thinks will improve even if it takes a long time and there is little reason to believe so?

It is hard though when for many it has already been a very long time. There has been nothing on the horizon from the Western medical arena which indicates any improvement in attitudes from that particular corner. In fact after the latest news release of the abstract from the Mayo, it appears that attitudes will precipitously worsen not improve towards patients with M symptoms. These anything but understanding attitudes now will involve not only those in the health care field, but also those who are in the media. All of them will no doubt hop like lemmings onto the bandwagon big time to reinforce the accepted myth of DOP.

Originally Posted by Isadora

Hi Belle and Bustercat,

This is awful. However, hope and understanding are always there, and things will not always stay so bad.

The ANA is a good blood test to have done. The results may be positive or negative, and, if positive, the titer level is important.

If the more expensive version is done, the pattern of flourescence could be helpful.

Dear Tcm,

I think that you are a beautiful and generous person because of the long personal message you sent me when I first joined. It contained exactly the things I needed to know. Nothing will ever dissuade me from this opinion that I hold about you. I think that this is the 'real you', and, furthermore, I think you did all that when possibly not feeling well yourself.

The 'understanding' was based on what Bustercat said to Belle.

We must never lose hope, because it is the most precious thing when one is sick.

This disease manifested circa 2,000.

There have been milestones of achievements on the way.

The most recent has been the finding of the Social Security Administrative Law Judge.

People should write to those in power about that fact.

Common law is based on precedent.

The corpus of case law that could emerge will be far stronger than the opinions of doctors who currently genuinely do not understand.

I wish to be your friend.

[tcmgpt13]

Hi there again Isadora,

I hope you did not mind me asking you what you meant by your statements. I tend to puzzle, perhaps too much, about what is actually being said. This is what started my puzzlement (from your post yesterday): "Progress is being made, slowly, so just please remember that things are moving in the right direction." It nearly sounds as if you know something we do not know, hence the question today when the same theme continued, this time with: "However, hope and understanding are always there, and things will not always stay so bad." From what you just said here, it sounds as if you do not know anything more than we already do. I would say my guess is close though. You are an optimist and thus stand back and see the world from that perspective.

At any rate I am always hopeful that someone here may have new encouraging information which might reveal news we have not heard as yet. Such as there is ongoing research in the UK about M, just to hear anything that might give us reason to have renewed hope. Even if we do not have a cure (ever elusive) on the horizon the suggestion of understanding and/or cause of M would lift the black storm clouds forming since we heard of the Mayo DOP "research" articles. Hopefully (lol) you can understand how I wondered if your statements were hinting at something more than you seem to have meant.

Anyway, thanks for explaining what you meant.

Originally Posted by Isadora

Dear Tcm,

I think that you are a beautiful and generous person because of the long personal message you sent me when I first joined. It contained exactly the things I needed to know. Nothing will ever dissuade me from this opinion that I hold about you. I think that this is the 'real you', and, furthermore, I think you did all that when possibly not feeling well yourself.

The 'understanding' was based on what Bustercat said to Belle.

We must never lose hope, because it is the most precious thing when one is sick.

This disease manifested circa 2,000.

There have been milestones of achievements on the way.

The most recent has been the finding of the Social Security Administrative Law Judge.

People should write to those in power about that fact.

Common law is based on precedent.

The corpus of case law that could emerge will be far stronger than the opinions of doctors who currently genuinely do not understand.

I wish to be your friend.

[pat]

This disease was around and working well in the 80's Isadora if not before that.I remember well all the skin peeling off my feet in 75/76 for no good reason.Also I had some strange symptoms late 70's can't explain very well but it felt like a waterfall under the skin of my temple.As if something was running down under the skin.
My mother had this without a shadow of a doubt and she died in 89. She had constant runny nose,sores up her nose.Black lines all over her hands that she removed with bleach and put down to gardening without gloves.She fell over a lot & lost her eyebrows,and her hair disappeared at an alarming rate,then the memory went and a lot of brain cells. Also had the floaters. There was a lot of symptoms she had but back then it was a mystery.

Hi Tcm and Pat,

Of course I do not mind explaining what I meant.

I have heard of some people having this prior to circa 2,000, but I think that the vast majority succumbed, (and are still doing so), after that date.

I have heard of people who said it happened to them, as you say, in the 1980's (roughly).

It must have been a particularly lonely and alienating experience at that time.

At least nowadays people can view the evidence, and support one another, while contacting the powers that be about the sheer numbers complaining of this.

[belle9]

Tcm,
Would you post a link to the Mayo articles, please? This is a terrible disappointment, but dermatologists do tend to diagnose DOP without research of any kind.

[tcmgpt13]

Hi there Belle,

It's been awhile since you've been here I know. Good to see you back.

Here's the link to kmar's thread:

CNN/Mayo Study-Morgellons is DOP?

Yes, this "study" is a disappointment as well as a joke, not that it will prevent doctors from believing what's been written. There's no way that this should be viewed as good research, but if it's in a medical journal it will be the accepted view until it's been refuted by actual extensive research from others. The collection methodology was extremely sloppy IMHO. Much of the "collection" of skin samples ensured contamination of specimens some of which were sent in by patients themselves. And then there's no way this can be considered just a skin disease which is all that seems to have been considered. How such conclusions can be reached on such flimsy evidence is beyond belief except by doctors, most of whom appear to understand little about scientific study.

BTW do you know that our main researcher, Dr. William T. Harvey, recently passed away? More sadness. Another disappointment.