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White Plugs, Black Specks, Morgellons

MemberMember
31
(@dar-wins)

Posted : 07/07/2023 8:20 pm

I've had a 9 year struggle that included many other symptoms besides my skin. I hate the term and association with Morgellons, but that is what comes up when one researches white plugs/white rice like/black specs/etc. I am not at the final ending, but perhaps sharing some info will medically help you.

1. I didn't get a break medically until I was referred to Immunology. For me, my Natural Killer Cells were low - you want numbers and function tested - two different tests. T3 and T4 were low but vacillated. IgG2 (but IgG is fine - which is what they will test first - you want subunits tested) and Mannose Binding Lectin were low. IL-1 Beta (Cytokines) was high. Perhaps not everyone's body gets to my point, or perhaps it takes years to impact your immune system. IDK.

2. This is actually more important than #1, but I am going in order of how it worked out in my life. You need to get into Endocrinology - any way you can. At first I ordered a glucose monitor (check your own blood sugar levels - no pricking needed if you are already bleeding elsewhere. Check morning before food/drink, at night, etc). Then a general family doc tested my sex hormones. I played pretty dumb with her, just only there (virtual) because I was concerned about sex hormones and nothing else (lol)......All my sex hormones were off the charts. I have had a hard time with doctors, so I tried to get into Endocrinology first based off my low blood sugar, didn't work - but I got in based on my sex hormones. I've had other hormones tested in past - came up with nothing. Never let a doctor just test TSH (Thyroid) - it must always include Free T3 and T4. TSH can be normal while T3/T4 are low, and that indicates an issue with your Pituitary and/or Hypothalamus. Those were my issues, but yours may be different. Here's why: the Pituitary is the Master Gland - it controls generally everything in your body. There are many other hormones that ought to be tested such as ACTH and Cortisol, but for my they were fine.

3. I was diagnosed recently (after 9 years of suffering and skin issues that in my extensive research I only found Morgellons as a match) with "Central Hypothyroidism". Misleading, as it means Thyroid is fine, it's an issue with Pituitary/Hypothalamus/feedback loop. Levothyroxine has helped me not only feel better, but has also helped my skin. I was on lots of antibiotics for the first few years as I continually got worse, and for the last two years I have been on Acyclovir (viral med) and Fluconazole (fungal med). I got those through Immunology. They were guesses, as no biopsy has proven infection. I thought those meds maybe helped, more than antibiotics - it was hard to tell as my illness has morphed throughout time. Levothyroxine helped my skin better than any of the medications above.

4. Due to my Immune Deficiencies that were found, I gained entry into a research study that is doing a full genome/exome on me. I found the doctor and the study myself by reading research articles and looking at the names of the authors. I called them directly. I have been waiting 2 years for results, they come in the next couple months. I had an MRI on my brain recently, as "typically" Central Thyroidism is caused by a non-cancerous tumor. There was no evidence of any tumor/mass. That leaves the causes of my illness (yours?) to genetics and/or an infection. I've always felt as if it was an infection, but it has never been identified. Immune issues that are caused by gland/hormone issues aren't considered "true Immune Deficiencies" as once the Hypothalamus-Pituitary-Adrenal Axis issue (look that up) is treated, the immune deficiency reverses. I have also found terms such as Dysesthesia and Paresthesia that seem to be related to Endocrinology disorders. Look those up if you feel itchy or sensations of crawling. I have found Perforating Dermatosis, which also has sub categories. Look that up. IDK. Any of those are possible, and so is an infection.

5. I was once diagnosed by a Dermatologist as having "Delusional Parasitosis". There was no Psychiatrist involved, I never had a Psych eval, she was not trained to make any Psych diagnoses, and yet it caused me great harm not only because she put it on my medical record which perhaps caused a delay of diagnosis, but it was quite personally traumatic. I was validated years ago, but the emotion toll took me longer to get over. Also, Endocrine issues can cause mood/behavioral issues - for me I was just full of rage. Maybe that was a natural response. Anyway.....love your body that is keeping you alive during this hell, don't listen to stupid doctors, keep pushing forward when you feel strong enough, and know that you are not alone.

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MemberMember
31
(@dar-wins)

Posted : 07/09/2023 9:41 pm

Just to clarify - as it seems I can not edit on this site: the immune issue is C3 and C4. The Endocrinology issue for me is Free T3 and Free T4. The C3/C4 blood test results initially gained me entry to Immunology department years ago, which vacillated btwn normal/abnormal. The Endocrinology test of Free T3 and Free T4 provided a more substantial outcome. So, C3/C4 is Immunology, T3/T4 is Endocrinology.

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