possible new treatment

[Ghettogirl]

Hi everyone,
I went to see Dr.Karjoo last week. There is an ad for him on this website. Here is what happened:
Went on website and filled out question form, submitted and office contacted me quickly for appt.
Arrived and nurse asked me where are my "trouble areas" and took pictures of them.
Took a hair sample by plucking and white hairs were there.
Some questions asked and the Dr. soon came in.
A little bit hard to understand, he has a Indian Accent, but not bad.
He asked questions like do I know where I contracted the morgellons, what are all my symptoms, basic questions you would expect.
He took a skin sample by just taking a scraping (felt good, nothing painfull) and went to testing dept.
He told me if I have a pet, important to have it gone from home for about 3 weeks.
For me not to clean my home (environment), have a service do it and not to be present while being done.
To cut my hair a bit shorter (my hair is a little past shoulders)and to keep it up, and pulled back. Not to have any hair touching face or shoulders, etc.
He said I could eat what I want but since I am a bit overweight, said he would like to see me loose a little weight.
He said I am not crazy, he doesn't know where morgellons comes from, but he said it is environmental.
I am to change my sheets everyday, clothes, and wash each day.
He gave me soap, a spray and a cream.
Take shower (he didn't say I had to take bath, shower was ok) in morning and at night before bed.
Use soap on my head (as shampoo.... and it lathers really nicely)and all over body, starting from head and work my way down to bottom of feet.
To dry off completely, then spray on body parts that have been giving me problems. Let it dry completely and to where loose clothes, a robe as example while drying.
Then take the cream and rub it in any lesions, bumps, etc. on body
To only where clothes that are 100 percent cotton.

On the website it says for a free consultation. True. But testing is either $250.00 or $300.00 and the products are $150.00.

I started to cry. Told them I have no money. I was very fortunate my daughter took me and I explained she was going to help financially as much as she can. (we were thinking around $100.00 thought maybe he would perscribe bacterin or ?)
As I cried, the nurse calmed me down and said she would give me a discount,
she charged a total of $250.00 for everything and gave me 3 extra bars of the soap.
All office visits are free of charge, and easy to get appointments. I was also told I could call as often as I want with any questions and to please email them with a weekly report of how I was doing.

I haven't had a cleaning service done yet, don't have the extra money. My boyfriend is not even willing to hear about boarding our dog, and I figure that wasn't important til I get a cleaning service to come in.
I was surprised about the soap, no bad smell, lathers, and washes my hair nicely. The whole body nicely.
The spray stings a little bit and smells not too good, but the odor passes.
The cream is to be refrigerated and looks like baby diarreah. Smells not too good too and seems to not rub in skin very well.

My hair is better, meaning it doesn't bother me half as much as before. I can even let it down after bathing and no itch, no nothing which is a big deal for me. Haven't noticed less fibers on head, seem to be same amount but, when I pluck the root with the goop on it seems to be smaller, I think they are not as "strong" as before. I also have not been taking baths/showers twice per day, but trying to get in habit this week.

I don't know what to think about this protocol. I am so confused. There is so many suggestions and everyone has a different way of dealing with this.
No mention of vitamins, or eating only organic. I did tell him that I keep my clothes in a plastic bin and he said to continue.
Just started this and if it wasn't for my kid getting some extra grant money for college I would of never been able to afford it. Going to a dr has been important to me because I haven't been able to see anyone with no insurance.(in the beginning i went to a walk in clinic, no help)

Wanted to let you all know about this. What do you guys think? Will give updates, etc.

Ghettogirl

[Baraka Obam]

I have dug in the ground, swam in the ocean, ate nasty boxed canned and fast food, do not get weird over cleaning, have taken care of other peoples dogs, worked in old houses with every kind of nasty inside, cleaned out the sewer latley on a rental, work with chemicals, spray paints, do not take into account bugs of any kind.

This is a disease, it is in our systems, buy the soap if it helps you, but the expensive stuff, I would look at a gym before paying a doctor.

[jeanlong]

Hi Ghettogirl

We have not "met" online - I'm both a recovering M's sufferer and a semi-retired TCM professional, a licensed primary health care provider. I think that advising to wear only cotton is close to the mark but not quite on target. Using/wearing things that are non-toxic and non-allergenic is extremely important, but that might not necessarily mean to just wear cotton.

This is from personal experience. Before getting M's, I did treatment on people with allergies and MCS. I have observed that dyes, chlorine bleach, pesticides and petrochemicals in fabric/textiles on the skin is not healthy for people who have MCS or M's because they cause even more cellular irritation and skin inflammation. I believe there is a connection between cotton and this M's illness, and in my mind the probability is high that wearing cotton allows a micro-organism to exit the body, infest the cotton clothing and reinfect someone who is healing up.

After being unwell with M's, I closely examined cotton items (old, new, organic, conventional, dyed, bleached, printed, undyed) under high magnification in the homes of both well people and people who have fibers, and people who have fibers who do not feel well. There is something wrong with some cottons and I have gotten to the point where I can feel something wrong by touch then a magnifier will show something knotted like the tiny fibers excreted from the M's sufferer's skin, and these knots are intertwined on the yarns in the weave/knit. They appear to grow over a long period, without food or water. New organic unbleached undyed unprinted cotton has never has these knotted items when new but they do appear later. This tells me something changes. Where these things come from that embed themselves into the fibers is an unknown, but I can say I have observed changes. And not all cotton becomes infested.

I have an item I have kept that is 100% cotton on the tag, and the bottom sheet and top sheet in the set look different now. The top sheet looks great and feels great. The bottom sheet has 1000s, maybe 10s of 1000s of these knotted fibers. It feels "wrong." I think perhaps when I was more ill whatever it was that was in my skin would come out from my skin and latch onto the bottom sheet and grow, and it would be on the bottom sheet not the top simply because the object tends to fall down with gravity. Some clothes feel wrong too. But I when I was first ill I was awoken for several nights in a row with pain sensations, then I'd feel some things come out from my skin like grain of sand and on magnification they would match many of the photos of M's objects I see on the internet.

This has not happened when I use silk, rayon, polyester or tencel which are the other fibers I have a lot in my textiles. After becoming unwell, I usually used unbleached, undyed, unprinted plain cotton that is organically produced for all our household toweling, bedding, socks and some clothing. We use only organic plain cotton sheets now. For my treatment table when I give acupuncture I only put plain organic cotton on it too. It was much more comfortable to my irritated skin. Cottons that are conventionally produced have pesticide residuals, as well as colorants and chlorine. These are chemical irritants and not healthy. We also do our wash with nontoxic brands of laundry products found in the health food store too. And my idea was that other cottons had chemical irritants that can be absorbed inadvertently through the skin. I am also usually wear silk, rayon and tencel.

At the risk of being repeating myself....I recall when I was doing patient care some years ago and some women would be plagued with recurring vaginal yeast infections. We finally sorted out they were being reinfected from clothing. They would wear underwear that would not allow enough breathing, then they would re-infect themselves when a vaginal yeast infection was clearing up. I had them launder the undies alone, then hang dry in UV (sun) or cook in a microwave as either would kill off anything living in the clothes. This improved things for almost all the patients with this problem. So now I suspect this M's illness is caused by a parallel situation, perhaps there is micro-organism that can infect cotton and then reinfect someone. I'm not sure and do not claim to know - but do claim I have done extensive microscopic observations as stated above.

Ever since becoming unwell, I have meticulously paid attention to this idea, that the textiles might be harboring a pathogen. At least my husband never became ill like me.

My conclusion is that this is some emerging disease - but I don't claim to know the western diagnosis. I think that advising to wear only cotton is close to the mark but not quite on target. I do think to wear things that are non-toxic and non-allergenic is extremely important, but that might not necessarily be cotton. I think dyes, chlorine bleach, pesticides and petrochemicals in fabric/textiles on the skin is not healthy for people who have M's because they cause even more cellular irritation and skin inflammation.

In TCM language, I have classified this M's as a type of "toxic heat syndrome" that allows infection and parasites to get a hold... and it is a match for a problem identified in the most ancient TCM herbal texts as a type of worm. The old texts say certain worms can be eradicated with herbs and diet, but only if the body is also detoxified, the idea being that the weiqi or body's own defenses are capable of getting rid of the problem but only when the body is not blocked from doing so by an internal toxicity condition because toxic heat syndromes block the weiqi. Modern westernized translation - toxic stuff interferes with normal/healthy immune responses and that the body is capable of healing but not when it is too toxic.

I'll go out on a limb here. I have no proof but I believe your doctor is wrong on the item about cotton clothes, for the reasons stated above.

I hope you will feel better and send you my sincere wishes for a full recovery.

best regards,
Jean

Originally Posted by Ghettogirl

Hi everyone,
I went to see Dr.Karjoo last week.

...To only where clothes that are 100 percent cotton...

Wanted to let you all know about this. What do you guys think? Will give updates, etc.

Ghettogirl

[sojii]

I wholeheartedly agree that cotton is not such a good idea. Inexpensive cotton clothing seem to be loaded with it, especially if comes from anywhere in Asia. Organic cotton may be wearable at first, but it becomes infected. I am able to wear certain cotton / acrylic blends, but only for, at the most, a few hours, without them bothering me. And when I wear them, I find "cacoons" made of thread filaments in my clothing, especially in my bra, days afterwards. Where they're hiding those red fibers from the top I wore on Monday, I don't even want to know, but somehow it ends up in a bra-cacoon on Thursday. And inside that cacoon is a black morg. I use 10-year old cotton towels for my hair, but don't use them on my body. I air dry in my bathrobe.

I can't afford to buy much silk, but it's absolute heaven. I found a silk sweater for a few bucks and it felt so good, not even mild itching, that I wanted to sleep in it, too. Maybe your doc would let you wear silk instead? This is a good time to buy silk on sale for next winter! Chico's has some beautiful silk sweaters.

(If anyone wants a great website for the most incredible silk things, beautiful tshirts, skirts and wraps, made in Jerusalem, PM me and I'll send you the link. I haven't been able to afford them yet but hope to one of these days.)

[Ghettogirl]

Hi Jean,
Nice to meet you!
I have read and heard about the same things you are saying about cotton. By the way, where do you find your socks at? Walmart, Kohls, and Biglots didn't seem to have organic socks and I have been looking for them.
As for the Dr...... I don't know what to think. I went there because he is in so. ca. and I saw "free" and a doctor with anything free is hard to find, seemed impossible when it comes to morgellons.
I have read a lot of posts from people, and most start off with a Dr and then have testing, so I thought it would be important to see a physician. I also know that most medical dr's are no help with morgellons, but it's been over 2 years for me since this first began and felt I should jump at the opportunity if available.
It concerns me that diet isn't a issue with him and vitamins, etc wasn't necessary.
I think I am going to continue taking the vitamins, TRYING to eat healthy(no sugar, gmo, etc) use the sauna at the gym (just got a membership....yay!)
And a little bit of other suggestions I have read and been using, and I will use these products until I run out. If there isn't any change when the products are gone, I will continue with my quest to beat this "morgellons madness" along with you all.
When I wear silks, or other materials along those lines, I feel less irritations. Don't know why, but I just think morgellons doesn't infect that fabric, at least not as much.
Thanks for the feedback.
You know, when I walked out of the dr's office I noticed that I didn't feel excited or any sense of relief. Gut feeling was "no big deal". Bummer, but not un-common for me to feel like that.
Take care all and appreciate all of you sharing and supporting!
Ghettogirl

[jeanlong]

Hi sojii

Do you wear synthetics more now? I have the least skin irritation from textiles when wearing tencel or silk. Silk can be costly but I had found bargain bin silk shirts over the years for a few bucks apiece and now wear them more than anything else.

What fabric is the bra made from? That description of a cocoon sounds similar to the sheets problem I have...I see similar type of little knotted fibrous balls with the thready stuff....like what I found in this one set of sheets I have that now feels like the bottom sheet is all bristly. But the top sheet is soft and smooth. It's so weird. I'm keeping them bagged up because if I get a higher power magnifier I'll examine them again later...I am suspicious of laundry products and water because something has changed these textiles. I used to use the color and fragrance free conventional laundry detergent. These days I'm using seventh generation detergent, ecover oxygen bleach and seventh generation fabric softener or something similar if that is out of stock. We have such hard water that even with a water softener the fabric softener improves texture. I also use borax sometimes and sometimes add in some dr bronners soap (peppermint, or tea tree). I am extremely suspicious that something is not right with the water or the detergent or the fabric. I'm not sure what or where these things come from that glom onto the textile fibers. I wish I could know for sure and do whatever is necessary to stop it from happening. It may be coming out from my own skin - I really don't know. Whatever it is, something is not quite right with cotton. Does anyone have suggestions on what to use for laundry to cut down on these knotted things appearing on the cloth?

We have a new set of organic cotton sheets on our bed today. I am hoping they will stay smooth, soft and free of M's fibers. I was unaware of the changes in the sheets until I examined them with 30x and higher magnification. Then I realized some older sheets felt smooth and great and some of our sheets had bottom sheets that were totally uncomfortable. That is when I began this microscopic examination of textiles which I have now been obsessing on for a few months. I have no conclusions, regarding the origin or cause of these fabric changes, and no explanations of why some sheets have this problem and others not, and why some clothes have this and others not....just observations...I found some silk fabric on sale and will be doing some sewing soon....

I hope you find clothes that are comfortable.

best regards from arid LV,
Jean

Originally Posted by sojii

I wholeheartedly agree that cotton is not such a good idea. Inexpensive cotton clothing seem to be loaded with it, especially if comes from anywhere in Asia. Organic cotton may be wearable at first, but it becomes infected. I am able to wear certain cotton / acrylic blends, but only for, at the most, a few hours, without them bothering me. And when I wear them, I find "cacoons" made of thread filaments in my clothing, especially in my bra, days afterwards. Where they're hiding those red fibers from the top I wore on Monday, I don't even want to know, but somehow it ends up in a bra-cacoon on Thursday. And inside that cacoon is a black morg. I use 10-year old cotton towels for my hair, but don't use them on my body. I air dry in my bathrobe.

I can't afford to buy much silk, but it's absolute heaven. I found a silk sweater for a few bucks and it felt so good, not even mild itching, that I wanted to sleep in it, too. Maybe your doc would let you wear silk instead? This is a good time to buy silk on sale for next winter! Chico's has some beautiful silk sweaters.

(If anyone wants a great website for the most incredible silk things, beautiful tshirts, skirts and wraps, made in Jerusalem, PM me and I'll send you the link. I haven't been able to afford them yet but hope to one of these days.)

[sojii]

I wear mostly polyester (bras, too) and use polyester satin sheets. Rayon is fine at first but becomes bothersome after wearing once or twice. Drycleaning doesn't help as it does with some fabrics and you can't wash rayon in hot water. I'm also still able to wear older jeans, but recently-made denim bothers me. The pilling on your lower sheet may just be from moving around on it. I had a cotton / poly blend sheet set several years ago that did the same thing on the fitted sheet. It was "BM" - Before Morgs. It was just an inferior grade of fabric. Maybe that's all yours is but I'd sure ditch it if I were you.

What is tencel? I've never heard of it or seen it on a fabric tag. Is it something new?

Oh, yeah, silk. Gonna get some more. Yeah, yeah, yeah (Can you tell I'm salivating? Wearing that silk sweater is the most comfortable I've been in over a year. I was almost able to convince myself I'm NORMAL!!!)

[jeanlong]

Hi sojii,

thanks for the reply. Tencel is like rayon made from processing cellulose to soften it, but the chemical is less toxic than what rayon is created with. Lots of MCS people are allergic to rayon but less so to tencel.No,I don't think tencel is new. Some items might be marked tencel-rayon. They are similar. In Asia both rayon tencel translates as "fake silk" on the tag. Cotton feels mostly not right and feels weird in a bad way which is why I started hunting for organic cotton. The sensation is extreme and makes me itchy if I am in a state when things are poking out from my arm otherwise it is simply just kind of too coarse feeling, which never was my experience before experiencing all these skin problems. I have had flare ups; my arm then feels like it is being stung repeatedly if wearing cotton--a miserable feeling. I stay in short sleeves when that happens.

yeah...I bagged up those sheets, probably they will go into the trash. silk? understand that! I like smooth silk the best - twills feel good and lightweight stuff for tops.

best regards,
Jean

Originally Posted by sojii

I wear mostly polyester (bras, too) and use polyester satin sheets. Rayon is fine at first but becomes bothersome after wearing once or twice. Drycleaning doesn't help as it does with some fabrics and you can't wash rayon in hot water. I'm also still able to wear older jeans, but recently-made denim bothers me. The pilling on your lower sheet may just be from moving around on it. I had a cotton / poly blend sheet set several years ago that did the same thing on the fitted sheet. It was "BM" - Before Morgs. It was just an inferior grade of fabric. Maybe that's all yours is but I'd sure ditch it if I were you.

What is tencel? I've never heard of it or seen it on a fabric tag. Is it something new?

Oh, yeah, silk. Gonna get some more. Yeah, yeah, yeah (Can you tell I'm salivating? Wearing that silk sweater is the most comfortable I've been in over a year. I was almost able to convince myself I'm NORMAL!!!)

[lamb]

Ladies!
try washing your clothes in Dr. Bronner's Peppermint Hemp Soap and some type of oxy clean, I use oxo brite found at Whole Foods. Disinfect your dryer. Vacuum the vent , the door and wipe both down with clorox wipes. Vacuum the vent again. I am so psycho that I put the used wipes in a sealed ziploc after each use.
Spray the inside of the dryer and the vent with a combo of pepp soap and enzymes as well. Top all of it of with a spray of Lysol in the dryer and on the vent
I use an 8 oz spray bottle 3/4 filled with Nature's Miracle (sold at pet stores as cleaner) and my personal favorite "tweetmint" by Safersolutions but you can us Dr. Bronner's here as well.
Put the clothes in and spray again with the solution and Lysol.

It takes forever to do the laundry but my few clothes do not "bite" anymore.

For those of you who cannot do all of this due to using laundry mats (been there, done that) Get the peppermint hemp soap, a, spray bottle and something made of enzymes, spray it in the dryer when your clothes go in.
Put some hemp soap in with your "ORGANIC" wash soap like Biokleen or Sunkleen. Stay away from chemicals. Shoot some lysol in there if you can do it discreetly... believe me ... I know how embarassing this can be!
Make up some excuse about allergies if someone asks you .

There are ways to make organic enzymes at home, they are on the net.
I just stick with my first discovery and what works for me.
My family is much better now and I do believe that laundry and environment are key.
I have no idea why, I just know this works for me, hope this helps somebody else.

I am not symptom free.. but I am a heck of alot better and can function in my home environment.

Good Luck to all.