More questions..looking for feedback - part II

[MELISSAJ]

Well, I want to begin by thanking all of my fellow survivors/sufferors. The one thing about this disease is that if you had ANY insecurities before, you surely have even more now. I have been very troubled by the isolation and dismissal of my concerns and I am worried about someone taking my children away and I am worried that if I don't continue on my journey to find the answers, my children will suffer more than they have up until now - which is a great deal. ( I know that was a run-on sentence - please excuse). I went to the doctors looking for answers and instead I have become a researcher, nurse, doctor, cleaning lady and exterminator in 6 weeks. It is very challenging to juggle everything and I honestly feel that I have been fighting for my life.

Okay, first let me begin by telling you that I had great success yesterday and today with grapefruit seed extract. I purchased it weeks ago and never tried it because I hate grapefruit, but after reading so much about citrus, I thought I would give it a try. Well, they did not like it and I did not truly know that I had any "they" in my throat and esophagus for sure. Well, I thought my throat was closing and I coughed and coughed and five or 6 dots come out of my spit. (sorry if too graphic)

Well, this was the same with my eyes and nose last Friday after I had an allergic reaction to being outside!! I have never had an allergy in my life previously. So, now come the questions to any takers.

1. Based on all the Morgellons info. I have received, my symptoms fit the profile the most. All others remedies tried have been unsuccessful until I stopped denying and began following the treatment plan for me and my environment. Do you believe that this is the Morgellons bug that I'm battling or that I have Morgellons and a bird mite. I read all of Frank's bug posts and researched bird mites, and I thought that I was battling that initially. I don't kow what Morgellons looks like but I have black, reddish brown. brown and white "sand" everywhere. When i clean the counters, they return right away. They are in my nose, ears, eyes and mouth. I am still getting a couple of bites per day. The boys have a few bites. Has anyone experiened this?

2. I know that I read about a bacteria that likes water (collum....I don't know the full spelling) has been found in Morg. patients and in there environment. Do you think this is part of my issue? Do I need more specific tests and experts?

3. I am taking 100 mg of Doxycicline 2xs per day. I gave my dr. some info. on Morgellons and some tests I should have done. I haven't heard back. What should I do? Should I print out the protocol and see if he is receptive or just call Dr. H. We all have insurance and I don't want to take chances. My gut is really tellling me that I need to act, but I am in a weird place...denial, confusion, alienation and frustration. Without you, I would possible be in a hospital or a box. I was that bad. You all really saved my life..our lives. I never spend this type of time on the PC. I am really looking for you to help me make an informed decision. I already had some decision making skill issues prior to this. When something gets serious, I act, but I often doubt and question. Remember, I am the only adult here. The derm. told me to stop wearing gloves and when I picked up my kids, my 6 y/o yelled, "She said not to wear gloves!" Gloves saved me from continually contaminating everything.

4. If everyone says my kids are fine, how do I get them tested or should I at this point?

5. Today I cleaned the coffeemaker, scrub brushes and shower curtain. The dots were everywhere. Is this part of the disease? Are they taking over? Those dots are what were biting me and now are biting my kids. Should I start throwing out or can I tackle this?

6. I am finding lots of pulls and rips in the fabric as I launder. Are they fighting me or am I being paranoid?


Thanks in advance for all your feedback.

Still fighting,
Melissa

[redibooks]

Melissa

I don't have any answer for most of your questions, but I would like to reply to one. If you have access to Dr H, or live in the area he practices, I'd certainly choose that option over taking a protocol to your own Dr. (unless you have a very good relationship). Its been my experience that most docs aren't terribly receptive when we come into their office with documentation describing our symptoms, hypothesis and or suggested treatments. For your own protection, I'd go with a doc in the know!

karen

[beverlybdmd]

I am NOT going to try and answer all of your questions. I hope Bubba will try and answer some of them when she gets a chance. I will start with some of the easier ones first.

Please try to relax and don't get too paranoid or panicky, especially about your kids. Anxiety & worry transfers itself to others and kids are REALLY sharp about picking up on anything that doesn't look "Okay." My daughter survived her childhood and adolescence with congenital Lyme disease and probably Morgellons as well--she is 22 now and lives on her own, supporting herself. We had NO idea what was wrong with us back then; but she managed to get through school and turn out okay.

There are many simple topical treatments that will probably be enough in the initial stages for your kids, while you are getting yourself treated and in a better condition. (creams, lotions, baths, etc. cinnamon, garlic, cloves & cumin are also very good, I hear.) Eventually you WILL want to have your entire family tested for Lyme disease, at least, even if the kids never go on any antibiotics or oral medications.

By all means, CALL your doctor back and talk to him again--never just wait for him to get around to calling you back again. Doctors just put things like that onto the back of their desks and then they get very busy & it slips their mind,and they forget to return the call. If it doesn't sound like he can figure the stuff out or be bothered with it after you try to call him a couple of times--then try to see if your insurance would cover you if you went to Dr.H. You can see him and pay for it, and then submit the bill directly to your insurance to have it reimburse YOU. (if it's covered.)

Because of what you have described with your laundry getting holes, (the parasites seem to borrow the fibers, I think.) I would bet that you have what most of us call Morgellons, or the fiber disease. I believe that you will only have a frustrating and pointless search if you attempt to find better experts who can do more specific sampling or specimen testing. Most of us have hunted and searched for experts who could examine and diagnosis these parasites and specimens that we can so easily produce. Unfortunately, the current state-of-the-art med tech labs are NOT set up to handle whatever it is that we have got. The specimens seem to degrade to some extent, and nothing alive or viable is ever found. They don't know how to test it for antibodies or antigens as yet. and no-one is electrophoresing it, because they don't know what or how to get a sample of "it." (or else they don't have money for that?) Anyway. There just ain't any conclusive tests for Morgellons. Many of us have elevated eosinophil counts in our white blood cell count. Mine has gone as high as 80% of the total white cell count (normal is 3-5%) It is usually only that elevated with parasite infections (like amoebas,) or sometimes with T.B. So,that is a very simple test, but it doesn't indicate anything if it is NORMAL, only if it shows increased eosinophils.

Last, but not not least, why does your son even know that the dermatologist said not to wear gloves? You need to go to your doctor while your kids are AT SCHOOL, and have some very clear boundaries between what is adult concerns & information, and what is the kids' business & information. They should NOT be involved in YOUR health care. That is the easiest way to get them confused and upset about whether you are "normal" or "unhealthy" or even "crazy" and start some sort of very unnecessary custody discussion. Just stay out of that territory by keeping their little world smaller and safer for them, and their image of YOU, a little bit less real. They aren't your best friends & confidants; they are your children--they won't really know you, until you're all adults together, IF then! So keep your privacy as much as possible and protect them from the details of what you experience.

Just Treat them matter of factly when they come to you with similar problems and complaints. I would say, "Oh, Morgellons (or Lyme) does things like that, and we have to use this cream really often if you want to prevent it." (or soak in this special solution...) etc.

Specs are taking over? they are "fighting you"? It is REALLY easy to personify this parasite or illness because it is SO ADAPTABLE and so successful. It is also present in our brains, so it affects our moods, our memory, our cognition, and our awareness; so it seems even more personal/pervasive. In the final reckoning, it will always be our brain, our body, our skin, our nerves, our muscles, our lives, and our homes, and we need to be stronger, smarter, and healtier than the Morgies to keep them OURS, not THEIRS.

[MELISSAJ]

You said all the things a girl would want her mom to say when she finally became a woman and a mother. Unfortunately, when this began, I thought we had scabies or mange and brought the boys with me to the derm. This only truly began for me an 12/29 while on a 3 week trip to NY in the country - farm animals, dead deer on the property that the dogs and cats were all over, unseasonably warm temps., my father's home was VERY dirty and I cleaned it for 3 weeks, and his spring water is untreated. I came home and I couldn't breathe without being bitten. I believed that the boys had the same condition, but it was still incubating. I was very sick and my kids are very young and it's just us - no family and I was embarassed to tell anyone. It has been a very strange couple of months.

Their dad is completely out of the picture. He has no contact in any way. He's in NY and I'm in FL. If something would happen to me at this point, my kids would have a lot of money tied up in probate because their mother has put off her #1 To Do LIst Item for 6 years. I wish I had had someone to help during the I think I am dying and going blind time, but I thought we were all contagious and did not want to pass this on!

I think I should make the appointment with Dr. H. I'm tired of not being just a little bit of me. My calendars, journals, and such are still in my luggage in the garage. This is the first time in my life (since 2nd grade) that I have not journaled my day. I guess this is my journal for now. I clean all day and still have so many places that I have to get to soon. Each day I do maintenance and one project, but I always get a new bite when I tackle a new area.

I'm sad. I'm sorry. I feel just a little bit sad sometimes late at night when I know I have to bathe and fight them and pray that I don't get bitten and my kids are spared from bites and my more than usual moodiness. They deserve better. I was quirky enough and now I'm the incurable bug mom....Okay. Enough. I'm just pooped. God gives me what I can handle and I need to shine during this time and help others by my recovery.

I just want to be healthy, train up my children, hug my boys, wear nice shoes, put on makeup and polish my toes and nails and get my hair done one day again before I turn 40. It will happen. I'm thankful that all of you take the time to let me know I am okay and not delusional.

Sleep tight.

Melissa

[beverlybdmd]

Hey Melissa, I have ordered the menthol crystals, and from what I have heard from OTHERS, these are what you want to throw in your suitcases of papers and journals for a few weeks, before you consider ever looking in there again. I have about a million old boxes of paper files in my storage room, so I will let you know how it works after I get the pound I ordered. something tells me a pound won't go far. ah well. I haven't dared open a single box or even LOOK THROUGH there in 2 years...

Honest, Melissa, you are still young enough to enjoy a lot more of life,
This too shall pass.

Happy Valentine's Day, all you Ladies, out here!

[MELISSAJ]

Thanks. Happy Valentine's day to all.

Love,
Melissa

[phillyfanatic]

Melissa, same here..dots & lint/fuzz everywhere and my boys wake up w/new bites all the time, too. I'm SO worried for my children, too. Their hair isn't shiny anymore, it grows very slowly, their teeth are yellow, wipe yellow off their skin, new bites, pimples?, itchy and their ability to concentrate has gotten worse. I feel for you, in all your posts...I'm kind of like you; my husband is only here 3 days/week and doesn't believe me anyway.
Hugs, fellow Mom! Philly