I WANT TO GO ON RECORD

[MELISSAJ]

I believe that most of us have been extemely upbeat given our circustances. I know that we are all very thankful for Bubba, Franky, Dr. Bev and everyone on the site who is helping each other by sharing. I honestly know that I have been spared many more visits to unknowing/caring doctors. You have prevented me from suicide on the worst nights. You have listened and given sound advice when I am ranting and scared. You have saved me much more money (although Eco-Vie and DSP are not cheap, 5 gallons of vinegar, 3 gallons of bleach, 4 litres of ammonia, herbs etc/ day is more expensive.)

With all that said, I am annoyed. I know that this is not the most productive use of my time, but I am going on record to state that this is not right. Morgellons is not brand new and the CDC is dragging it's feet and in the meantime, I cannot walk into a doctor's office and tell them that we have all been exposed to a parasite without them calling social services to intervene and take my boys away from me. I believe that my physician (my friend's brother in law) may very well believe that I was making more of this than need be. Although I have new and scary symptoms (vision loss, respiratory issues, new cluster lesions), I cannot go to him. Although I have insurance and never use it because we don't get sick, now that I need to use it, I cannot because the best doctors treating this "mystery illness" do not accept insurance.

Although I have friends and family, I cannot turn to them w/o being treated like a leper. In the end, I chose to live and learn on my own (with you and God) and turn my life upside down and take help from strangers (no offense everyone) because I know that it is the most concrete advice that I have received in 2 months. I sound like John Stossal (sp.) on 20/20 ...that's just not right.

So, in the end, I chose to live and get the best care without the proper local support I need during a crisis. I chose to get support from all of you especially those of you who would give Mother Theresa a run for her money!!! I know that you will always be remembered as being on the forefront of this disease and I appreciate that, but honestly, I would rather walk into the doctor's office as a family and get treatment and call it a day. I don't mind everything else, but I mind questioning my own sanity as I fight this organism and wonder how did this happen and maybe it is a nightmare and I'll wake up. The problem is that I watched the strange objects come out of me after using eco-vie tonight and I'm still where I was when this started...sick, only more informed and with new symptoms and my kids are showing signs. Is it me or my house or what? It is a rhetorical question because we don't know. Anyway, I'm a miserly mom and am annoyed that this will take away from my boys' 529 plan and I have to travel to see a physician who will take 50 vials of blood. Now, how do I tell me kids they need to have blood drawn????

The funny thing is that we live in America, and the best products right now are from other countries. What is the problem? I know that there must be money to be made by the pharmaceutical companies and the insurance companies by a disease like this, but the social ramifications of not getting us the proper care/treatment are huge. Most cannot work, family life has completely been turned upside down, etc. etc. I find it suspicous that Morgellons sites are some of the most popular boards. I never heard of this until I experienced it, do you think it's growing?


Okay, no more venting.

I'm off to order vitamins and do paperwork and fold - dryer just stopped.

I hope I did not offend anyone.

Melissa
Melissa

[jannyjo]

Hi All,

I really don't know where to begin, but first, I want to say to everyone DO NOT GIVE UP...NO MATTER HOW HARD YOU HIT BOTTOM. That being said, I do not think this is a gift...maybe a gag-gift...this illness has totally ruined the last 10 Yrs. of my life. It started in my mouth in which it managed to destroy half of my face, requiring major reconstruction only after it was totally obliterated by many laser treatments, debridements, teeth extractions, IV meds, etc., etc., and after being totally healed by none other than the Mayo Clinic. Around the time I was set to start reconstruction...the infection moved via fistulas to my sinuses, ears, then on to my scalp and neck. By this time I am in the 5th Yr. of this nightmare. Mayo Docs do the three surgeries on my face and tell me to go back home and get my head taken care of. Well, we are now in the next 5 Yrs, and not doing well...plus gathered many more symptoms along the way. Not only has this broken my body and looks, but has ruined my marriage. Oh, my husband is still with me, but does not support me, you see, he is so scientific minded that it is beyond his comprehension that all those doctors could possibly wrong and I am right. Some of the Docs, not all, believe that I am doing this to myself by picking and pulling my hair out.
Even though, I have been diagnosed with many horrible bacterial infections and fungus on my head. My children don't know what to think...denial, denial, denial! I have twins in medical school studying to be P.A.'s, and no they are not learning a thing about this or Lyme. I have had doctors lie about things that I did not say...I find this in my records when I retain copies. I deal with this totally alone and never posted on any forum until I found this one. I have an appt. with one of the Drs. on Bubba's list tomorrow...I am very nervous and can not get my hopes up, but if it turns out good, I will consider this a "Divine Intervention". I only found out about Morgellons 3-4 Mths. ago, so maybe that was the first "Divine Int."

I have thought many times I could not go on another day...and not many days go by that I don't shed tears. One thing I know for sure is that we don't all have the same co-infections...my symptoms fit the Lymie with a little Morgie stuff...so, we shall see what tomorrow brings! WHEW...I've been wanting to unload that for 10 Yrs...and there is ALOT more, but I will spare you all the sordid details. BTW, I am a very sensitive type also, do you think those parasites are drawn to us?LOL Another thing I don't do is clean my house like a maniac...my husband would really think me strange. He is all about nature and likes a clean house, just refuses to live in a sterile bubble. My family did not like the menthol diffusion going on, so had to shut that down. This is the pitts! Sorry for my rant...had to get it out.

All my best,

jannyjo

[standswfist]

IT'S GREAT TO C THAT YOU ARE DOING YOUR HOMEWORK, MELISSA

GLAD TO C SOMEONE IS FINALLY CATCHING ON!!! Awesome post~ now go read you other one on um...shoot. throwup everywhere after cleaning and such....or did you already?

O wait, did ya google dead scientist yet? Then you'll really get it!!

[phillyfanatic]

Janny, I can relate to your situation, sooo much. I went to a Dr. from the list yesterday. When I got home, all my husband could do is rant about was how much all the prescriptions are going to cost and when he saw suggestion to put DE all over the house, he flipped, "you're not putting DE on the carpet". I don't know how I will ever get well as long as he keeps ignoring everything in our environment and doesn't do a thing to help me get it out of here and off all of our stuff. My twin 7 y/o boys are showing symptoms, too, which he also chooses to ignore, which scares and hurts me so much. My dr.s have accused me of picking my skin and implied I was pulling my own hair out and that it fell out 'cause of stress. The Morg/Lyme Dr.(he had Morgs himself) I went to is convinced I have Lyme(says 94% of Morgs have Lyme) and is sending me for labs, specifically CD57, which is a marker for Lyme, so maybe I'll have something in black-n-white to "prove" I have Lyme, which will be only way my husband will believe me. It blows my mind how he can sit back while I'm deteriorating before our very eyes. Anyway, Janny I wanted to let you know, I am in a very similar situation to you(I've been sick 6 yrs. and have been getting much worse past 2 yrs) and I know how much it hurts not having support and how lonely that can be. Hang in there, we will get through this, together! It's very sad how this disease affects/wrecks our looks, our lives and our relationships. I wish you well, on your healing journey!
Hugs, Philly

[jannyjo]

Originally Posted by phillyfanatic

Janny, I can relate to your situation, sooo much. I went to a Dr. from the list yesterday. When I got home, all my husband could do is rant about was how much all the prescriptions are going to cost and when he saw suggestion to put DE all over the house, he flipped, "you're not putting DE on the carpet". I don't know how I will ever get well as long as he keeps ignoring everything in our environment and doesn't do a thing to help me get it out of here and off all of our stuff. My twin 7 y/o boys are showing symptoms, too, which he also chooses to ignore, which scares and hurts me so much. My dr.s have accused me of picking my skin and implied I was pulling my own hair out and that it fell out 'cause of stress. The Morg/Lyme Dr.(he had Morgs himself) I went to is convinced I have Lyme(says 94% of Morgs have Lyme) and is sending me for labs, specifically CD57, which is a marker for Lyme, so maybe I'll have something in black-n-white to "prove" I have Lyme, which will be only way my husband will believe me. It blows my mind how he can sit back while I'm deteriorating before our very eyes. Anyway, Janny I wanted to let you know, I am in a very similar situation to you(I've been sick 6 yrs. and have been getting much worse past 2 yrs) and I know how much it hurts not having support and how lonely that can be. Hang in there, we will get through this, together! It's very sad how this disease affects/wrecks our looks, our lives and our relationships. I wish you well, on your healing journey!
Hugs, Philly

Hi Philly,

Thank you for sharing your story...I know it is so hard to understand these men. I want the carpet replaced with a natural stone or stamped cement, but he won't have any of it.

It sounds like you are having similar scalp issues as me, as well. Do you wear wigs? I have been dealing with this part for 6 Yrs., and if you need any suggestions, let me know. I know of several good wig/scarf/sleep cap/hat web sites and one tip that helps all scalp symptoms, is to keep the hair cut short...almost to the scalp. Is your hair growing out kind of fuzzy and white? I have many nodules/cysts/abcesses, I don't know exactly what they are, but there is alot of granular crust with gummy/slimy growth on skin, plus lesions that drain. My hair/fibers, whatever is growing is ingrown into these nodules and my hair pulls and is painful. I hope I explained that to where it makes sense.

I have twins, too...they are identical, and another daughter. But, no one else in my family has this. I was basically diagnosed "clinically" with Lyme today, and was given meds that should help. I hope your treatment brings great recovery...we both need something to bring these Husbands around. Let me know if I can help in any way.

Take Care,

Jannyjo

[beverlybdmd]

Looks like we could start a little club of "married to non-believers" or some such. It took me about 6 months to convince my husband to get tested and see a doctor for possible Lyme disease, after I was diagnosed. But, he hasn't been that happy about both of us requiring antibiotic treatments for more than 4 1/2 years, and he has been completely credulous about Morgellons' fibers, or parasites. He just wants to dismiss my whole problem as "something" that is stimulating my nerves to cause these uncomfortable sensations for me and convincing me of lots rather improbable concepts. (probably the Lyme.) and for him that feels safe, seems to be the only manageable way for him to cope with it all. So, I try to respect that, and just try not to worry about what he needs to think about what I am doing or how I am living.
So, I have moved downstairs, where I could clean to my own specifications & needs and run my menthol diffuser (he also objected to both of these.) I agreed to two closed doors between the menthol and him, but refused to stop--even so, it still leaks out, and often stinks up parts of the rest of the house a little. But then, sometimes your roommate might cook something smelly; and HE was on a full blown GARLIC routine that REALLY stunk for 2 months. I don't know: I figure it's like life & death right now, and menthol is really a life saver. I am NOT willing to give up on my health for him at all any more. Luckily our kids are grown & gone. I will leave this house, before I will give up on what I feel to be necessary and useful for my health. I think that the time for sacrificing for my family is passed for right now, for me, thank goodness. I need to demand that my needs are met, too.

[hilly]

Poor Beverley, I feel so very very sorry for you. I am so lucky in that my husband is totally supportive and helps all he can. I feel terrible about smelling of garlic, or spraying the bed or getting up and down at night and coughing. etc etc but he's been so good and uncomplaining... You certainly need to look after yourself in every way possible and fight this wretched disease with everything you can and try not to worry about him. All the very very best in your fight.... we'll win in the end, and I hope very soon....Hilly

[linnysue]

I know.
My heart just breaks to read about those who don't have the support from their spouses. I'm also one of the fortunate ones to have not only the support and understanding from my husband but also the support of friends and co-workers. Last night friends had us over for dinner, and they were telling me that they heard a radio program on Morgellons while they were driving back from Mexico to home. They both said that they thought of me when they heard it. Now they are informed and understand what I'm talking about. It certainly helps in this healing process to have this support. They are also praying for me and I KNOW it is helping.

I'll be praying for each and everyone of you that you will have exactly what you need to help you fight this battle.

[MELISSAJ]

Hello to all. I hope the doctor's apptmt went well in OK. I was thinking about you. I am FINALLY doing my paperwork for Dr. H. My instinct says go there. I'm not fighting it. I thought I would get better enough that I could have most of my life back or see someone close by which is why I have procrastinated. So, keep me in prayer.

I am sorry that you are all having issues with non believing spouses. That is just wrong, but if someone is not experiencing the same symptoms and lives in the same house, I honestly could see where the denial comes from...not that it's okay.

When you experience it, you KNOW it exists. Two mths ago, I wouldn't necessarily not believe, but I would think thank God it's not me.

I feel so fortunate to have you all and have the PC and the internet and cell phones, etc. etc. Imagine life with Morgs and w/o these technological advances. We'd be in such worse shape. Dr. Bev can probably relate because of her early days with this disease.

So, how do I handle this when I don't have anyone except all of you to talk about it to? I just do. On the good days, I REALLY work hard at denial!!

Love,
Melissa

[phillyfanatic]

Originally Posted by jannyjo

Hi Philly,

Thank you for sharing your story...I know it is so hard to understand these men. I want the carpet replaced with a natural stone or stamped cement, but he won't have any of it.

It sounds like you are having similar scalp issues as me, as well. Do you wear wigs? I have been dealing with this part for 6 Yrs., and if you need any suggestions, let me know. I know of several good wig/scarf/sleep cap/hat web sites and one tip that helps all scalp symptoms, is to keep the hair cut short...almost to the scalp. Is your hair growing out kind of fuzzy and white? I have many nodules/cysts/abcesses, I don't know exactly what they are, but there is alot of granular crust with gummy/slimy growth on skin, plus lesions that drain. My hair/fibers, whatever is growing is ingrown into these nodules and my hair pulls and is painful. I hope I explained that to where it makes sense.

I have twins, too...they are identical, and another daughter. But, no one else in my family has this. I was basically diagnosed "clinically" with Lyme today, and was given meds that should help. I hope your treatment brings great recovery...we both need something to bring these Husbands around. Let me know if I can help in any way.

Take Care,

Jannyjo

Hi Jannyjo! Hope I did the quote thing right! Yup, my scalp sounds like yours. Seems the black hairs are always ingrown at first and yes, lots of white(almost transparent) hairs. My hair started growing back in, but is falling out again. The whole front has come back out, almost back to the crown. Strangest thing, I can pull(barely) and it slips right out. I have pustules and lots of white patches, too. I bought two wigs last summer, but cause of my house issues, started finding white hairs on my wigs, really freaked me out and they itched so bad I couldn't stand them on my head, so I'm still in baseball caps. The hardest thing for me to deal w/has been the loss of eyelashes/eyebrows, which aren't coming back and eye makeup was all I used to wear...hard to hide the loss of this hair! My scalp biopsy showed 'trauma'; I knew I wasn't scratching/pulling, so I wish I could get another explanation of what exactly the 'trauma' means/is. I can see the trauma to the follicles, just don't know the cause. Is your hair coming in real coarse, like straw? Can't seem to make it soft, no matter what I was it with. I recently got Eco-Vie so will see what I can do w/that stuff. I was encouraged when someone else wrote that they were able to get rid of brown spots/moles on skin, so we'll see. Thanks for writing; it's nice to know someone else w/similar situation and I appreciate the encouragement! Hope you have a better day! Going for my EEG results today, will be nice to get some answers, hopefully!
Hugs, Philly