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[trz103]

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[skylark99]

... and thanks for this post. You are very warmly welcomed to the forum, I am sorry that you have to be here, but glad for you that you have found us -others who likewise have this health problem and can offer support and help.

I also observed similar health symptoms in the beginning, slowly over time. Had my house checked out, nothing found (except a bucket-load of sarcasm from the "experts").
Biting and stinging sensations followed, but no "flying lint". Many months of sleepless nights and the whole long search for a protocol that would help.

Of course, nearly all of us have have had the medical professions insults either verbally, or later found in our medical records -- which I heartily recommend collecting and saving copies of all of them written up during this illness.

Of the whole experience, I would have to say that the going it alone and feeling neglected by the medical community is very difficult, the symptoms of course are sometimes not only baffling but a burden to bear with sleep and exhaustion being a constant.

I found that the lack of humane treatment and attitude by the medical profession was the most lasting damage, however. Once the label of a psychiatric diagnosis is slapped on -with or without supporting clinical evidence-- any hope for diagnosis and treatment of any non-Morgellons health issues is a rarity, unless of course everyone in the area also has a sore throat or chest infection, or the symptoms of organic illness are glaringly blatant (e. g. advanced).

As to what the majority of doctors are or are not doing to investigate, there seems to be a few here and there widely scattered who are doing some testing of CD57 or cytokine levels (immune function tests, and low CD57 and high cytokines seem to be common for us), or looking at cholesterol levels (high values seems to be common in us). Some will prescribe antibiotics of one type or another with varying results. There are a precious few doctors really trying and humanely responding to their patients, but these doctors are a rarity. There is another pool of quacks, with varying levels of dubious medical qualifications taking advantage; fortunately, these are often quickly spotlighted and shunned en mass.

But the majority of doctors are not really looking and examining the skin or making much effort to substantiate for themselves if their patient is really suffering from the unpleasant symptoms of an actual organic (physical) illness. Many are simply dismissing patients with the popular assumption that it is a psychiatric illness.

In actuality, the mental health symptom of delusions of parasitosis is a subset of schizophrenia. In other words, a patient with a mental health illness does not have the symptoms from suffering from the delusion that they have a parasite infestation unless they are also schizophrenic.
Delusions of parasitosis does not exist on its own as a psychiatric illness, it is ONLY a part of, A SYMPTOM OF, schizophrenia. Thus, DOP is not a diagnosis. If it appears in a patient's medical records, it is a symptom, but it is clinically useless and not treatable, unless the diagnosis of schizophrenia also exists. It is the same as saying a patient has chronic joint pain, but not identifying the cause (arthritis, gout, bacterial infection of the synovia, etc) -all of which ARE recognized diseases and diagnoses.

I would not expect that most general medical practitioners would know this, as they are not psychiatrists and very rarely qualified to make psychiatric diagnoses. In reality, general practitioners or primary doctors may refer patients to other disciplines, but are not really supposed to practice outside the scope of their certified qualifications; when they do, I believe that in many places there are laws and sanctions that are supposed to prevent this ever-growing trend.

There does seem to be, however, quite a blurring of the line in terms of 'qualified' to diagnose, and I think the line is often overstepped. It is my belief that there will eventually be a consequence (probably a roaring tide of it) to all this mis-diagnosing and practice outside the boundaries of one's qualifications. The growing probability of mass litigation is factor (in my opinion) to the political-ization of other misunderstood illnesses such as Lyme, CFS, ME etc, and I believe this muddling has a profound effect on research and development of treatment options. I am of the opinion that Morgellons has joined that list of illnesses and has had a deleterious effect on research and the release of the CDC's long-over due Unexplained Dermopathy report.

My reply to your post is a bit of a rant, I admit. But it is not without a specific intent. I post it to offer some hope to all newcomers and to highlight that despite the fact that I have been medically neglected, labeled as a psychiatric patient and suffered horrendously for months and months, as we all do, that despite all this not in my favor and without any help from the medical community --I have actually regained a measure of health.

I do not know how this has happened. I have tried many treatment suggestions written about on this forum. Antibiotics, supplements and vitamins, triphalia, eating whole foods, anti-parasitic medications, sulfur soap and Jason Dandruff Shampoo, salt baths, giving up dairy and fat, the list is endless. And somehow, at one point things began to turn around and I had a few days of symptoms getting better and better until they stopped.

That was seven months ago.

I do not know what has made me better. It could have been one single thing, or a combination of several or more. What worked for me --if I knew what it was -- may not work for someone else, as we all seem to have a variety of symptoms surrounding the core symptoms of skin issues.

It is also true, that I have no guarantee that my very distressing skin (and scalp) symptoms will not return. If they do, I will once again be in a position of trying this and that, as I do not know exactly what turned things around.

I only know that each day that I remain symptom free of the worst of it, is a great blessing. It is often tinged with a measure of guilt that of all of us who have this and deserve to get better, that I am the least deserving.
It should have been him or her, I think, who deserves so much more to get better, who has suffered so much and still suffers. I may be stronger to endure it longer, I sometimes think, Why was this person or that one not given this gift instead of me?

But it is because I have also experienced this and understand what it is like, that I stay here and post, still look for answers and write to other members here. There are some of 'old timers' still doing that (kudos, guys and gals).
I do know that some of us have got better, able to pick up threads of our lives. It is that hope, that I want to share, the assurance that even without many doctors trying to help and support, some of us have got beyond the most distressing part of this, and you can and very likely will, too.
Your post is very upbeat and you have a good and positive outlook, and thank you for that!.I will be doing the Happy Dance when you see improvement in your symptoms and will be impossible to calm down when you get better !!

[Baraka Obam]

Well put Skylark, thats about it in a handbag, touched on a bit of it all.

[tcmgpt13]

Welcome to the forum trz. Sorry you have this illness but I am glad you have found your way here for some support. Unfortunately doctors sometimes do not listen to you if you mention M. It's hard to have a disease whose very name is a dirty word, but so far that's the situation with M and doctors. As you have already learned it is always best to just discuss symptoms when seeing a doctor. Then you may get some help for current symptoms at least, as you did with the bacterial infection you had. I have had some antibiotics for infections as well as acyclovir for some viral issues. All of these have helped in my recovery somewhat along with following some suggestions from the morgellons treatment thread which may be located on the main page of the forum. I also use a lot of herbs and find that for my own issues this type of treatment controls many symptoms as well. Anyway, good luck at finding what works best for you to alleviate the worst of it.