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Post by perplexed on Apr 25, 2009 20:07:29 GMT -5
Hi All, I am new to this site and there seems to be a lot of friendly discussion from people who seem to have a lot of experience with Morgellons I was hoping someone might be able to help my husband and I by telling us if all of our "goings ons/symptoms" resemble Morgellons. I will try to be brief even though so much has happened since December. We started out chasing possible bed bugs for a couple of months, then we were getting biting, stinging, creeping crawling feelings during the day, mostly by night, so we decided that some sort of mite was a possibility. In 5 months we have not been able to find one bug. We have specimens all over our house which we usually look at and shrug. We entertained the possibility of allergic reactions to DE. Doctor says "looks like bites". We had read about Morgellons in our tireless internet searches, and dismissed it because we have not had large lesions with fibers emitting from them. We have things that are more pimple like. Little volcano eruptions about 1/16th of an inch. Sometimes we feel jabs like someone just stuck us with a hypodermic needle and find a 'bite' in that spot. Usually extremely itchy. Sometimes we feel little electrical jabs under our skin. A couple of days ago, when I felt one of these, I quickly took my 30x hand held microscope and looked at my skin at that spot (right below my fingernail) and saw a black curled line under my skin (a fiber?). I also saw a bright red line, and a few more black ones in the area. I didn't notice any actual movement, but one did change position and then they disappeared when I checked later. The reason I looked at my skin is because the "electrical charge" feeling would not dissipate as it usually does. After it subsided, there was a red area left on my skin and the area was inflamed. In our specimen jar, we had some specks that came off my body that at first looked like scabs under 30x magnification. Kind of honey colored, clear, and blood colored. (Didn't see any fibers) For the heck of it, I looked at them again, (they were at least 4 weeks old) and I now see fibers all over them, black, clear and red. A few of the black ones are intertwined in the specimen which makes me think that it's not just random dust that fell on top of them. Does this sound familiar to anyone? One other thing that makes me think it may NOT be Morgellons, is that both me and my husband have these red spots all over our body. Looks like someone took a red fine point marker and just dotted us up. Some a little larger, some a little smaller. Does that sound familiar? I haven't heard anyone mention anything like this. Does anyone know if this thing can start out slowly and exacerbate over time. I actually had a few episodes of the biting feeling on my arms a couple of years ago as well as the electrical impulses but each time, they just kinda went away! Sorry for the long post. I am just so distraught and so wish I could get back to living a normal life. Even though my two kids, age 14 and 11 don't seem to have the same trouble that my husband and I are having, (except my daughter complained of a stabbing in her hand. We have not shared those details of this with her) their life is all out of sorts as well. No friends over (no furniture and lots of DE thru out the house. I'm sure I don't have to explain the nuances to anyone here. Thank you for your time.
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Post by Carrie♥ on Apr 25, 2009 20:14:53 GMT -5
Hey Perplexed our kids are the exact same age ;D.
Sorry you found us but it's highly unlikely that you've been through everything you've been through and found us that you DON'T have Morgs.
And sorry again, well depending on the type of red dots but they're called petechia and it is many of Morggie's symptom. They're lil' broke blood vessels under the skin, sign of infection or inflammation or both.
So sorry your here!!! I think there are some stages that are infectious but if you've both got it I'd just like to suggest you do some research and make sure you're home isn't the source.
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Post by chaosonline on Apr 25, 2009 20:22:23 GMT -5
perplexed,
The electrical feelings are Lyme disease related for sure. These were one of my first symptoms. The jabbing is also Lyme related. Have either of you ever been bitten by a tick? Tested for Lyme?
Your "eruptions" sound similar to mine. I have had a few deep lesions but for the most part they are pimply raised spots, usually three or more in a small area. These do itch a bit especially when first forming. I am covered with the tiny red spots, especially my chest and feet. I recall reading that the tiny red spots are parasite related.
The lines you speak of sound like what I would call fibers....so my opinion...for what it means...is yes you probably both have Morgellons, and Lyme Disease.
Welcome to you both. Sorry for the circumstances and I wish I could have answered your questions differently!
Karen
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Post by perplexed on Apr 25, 2009 20:28:00 GMT -5
Thanks for your reply Carrie, Can you explain what you mean be my house being the "source". Do you mean for Morg or bed bugs? I thought there were many theories on Morg but no real answers. (Eleven and fourteen are great ages aren't they?) Have to tread easily with the teenage boy.......and well I guess with the 11 year old girl too! (those female hormones, lol).
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Post by perplexed on Apr 25, 2009 20:39:36 GMT -5
Hi Karen,
Thank you so much for your input. It's funny but this morning I was ready to accept my fate and deal with it. But after reading your post, I want to cry.
Over the last 10 years I have had a lot of quirky neurological type syptoms that come and go and my husband and I often thought Lymes even though I was not aware of being bit. I never got myself tested because I heard that the tests are not a real indicator.
A couple years ago while taking a shower one morning, I did find a tick attached to the underside of my breast. It was so embedded that it was almost a part of my skin, (you never heard anyone scream so loudly, lol) No bullseye lesion though.
Your lesions sound like ours. I guess I'm glad I didn't spend the thousands of dollars all the exterminators wanted to charge me to treat my house for bed bugs!
Thanks Karen, sorry to hear that you are here too. My heart goes out to all the people with some really terrible stories.
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Post by bannanny on Apr 25, 2009 20:49:46 GMT -5
Oh I hate to see new people come here... altho this board is one of the best for those wanting to find support and to learn about what helps the most. We're all family here, which makes things so much easier to deal with... and we welcome you guys as a part of that family. We've heard it all and seen alot, so there's no need to ever feel that something might be too strange to bring up. We've all experienced the weirdest and strangest of the strange here.
I also hate to say it perplexed, but it does sound like morgellons to me too. I've had this for 5+ years but I've never had a lesion. I do have the small red bumps tho along with some calcified looking whitish ones. I also have alot of the electrical sensations. I've had it effect my hair more than anything (where it started for me) but it's become systemic thruout my body now. Still no lesions tho, sometimes I think there might be 2 different strains of this mess.
I'd suggest getting yourselves on some immune builders such as Kyolic 103. You can order it off the internet or get it at a health food store for starters. Also do an internal cleanse, which you can also get from any health food store. But you need to check the supplements page and read some of jwf's suggestions especially. Just click on the "supplements" box here on the page where all the boxes are. Jwf has helped himself and his family to pretty much rid themselves of this disease. He's very helpful and kind and he really knows his stuff.
I think Carrie may be talking about mold and such in your home. If you do have a mold problem, it needs to be cleaned up as it will only make things worse for you. Also yes, morgellons will exacerbate over time so you need to get a jump on it asap. So please go to the supplements page as I suggested and get on top of it while you can. If you do, your chances of being able to keep the upper hand on it will improve tremendously ok?
If there's anything we can do to help... just talking or whatever, we're here for you.
big hugs ~~ bannanny
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Post by bannanny on Apr 25, 2009 20:55:48 GMT -5
Oooops! I forgot to mention something I feel is very important. Go to your health food store and get some "Buffer PH" along with some test strips to test your ph with. It's very important and it's believed to help alot to keep your body alkalized with morgellons. Not much can grow in an alkalized body and taking the pills makes it easy to check it and keep it that way. That way you don't have to do it via food which can be a little difficult to do (in my case it was anyway!) Just didn't wanna forget to tell you about that!
love ya's ~~ bannanny
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Post by toni on Apr 25, 2009 21:15:50 GMT -5
Hi Perplexed,
I'm sorry you're here too, but you're at the right place. Many of us have tried all kinds of things, and so many suggestions have helped reatly. It's all a trial and error thing of what you find that helps you best.
Those tiny dotted pimply ichy dots you get, and maybe even form a tiny scab, then go away, yes, that too sounds familar. Sometimes they itch intensly, and sometimes it's hard to distinguish them between a tiny pimple or something, but having Morgs, I sure tend to feel they are Morgs too. Everything you're saying actually sounds familar.
(as Bannanny said) the alkalining the body- making sure you eat things that will cause this effect, or baking soda, or supplements...all those really really help, because it does seem that when our body gets too acidic things get worse.
Take care.
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Post by perplexed on Apr 25, 2009 21:26:38 GMT -5
Thanks so much bannanny, I definately think I'm going to cry now Not only do I feel as if I've been punched in the stomach but at the same time I feel so grateful to be accepted here in this group. Thank you. The internet really is a wonderful thing. My husband and I have been feeling so isolated and now I feel as if I'm with people who I can speak freely with. We stopped everyone from entering our house, including my son's piano teacher and when people ask us how things are going, we lie because we know that people will think we are crazy. How are people doing this with young kids in the house. Do you let them have friends over? Do you feel contagious? I will go to the health food store and look into the alkalinity of our bodies. We actually have ramped up our "get healthy" efforts 2 weeks ago because I decided it was the only thing in my life I have some control over right now. So I have added fish oil to our diet as well as even more veggies and fruits and water and less fats. Looks like we will stick with that and think positive. Thanks for the hug I needed that! Right back to you! -Less perplexed-
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Post by perplexed on Apr 25, 2009 21:30:41 GMT -5
Thanks toni, appreciate the kind words.
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Post by Carrie♥ on Apr 25, 2009 21:39:28 GMT -5
Thanks for your reply Carrie, Can you explain what you mean be my house being the "source". Do you mean for Morg or bed bugs? I thought there were many theories on Morg but no real answers. (Eleven and fourteen are great ages aren't they?) Have to tread easily with the teenage boy.......and well I guess with the 11 year old girl too! (those female hormones, lol). Boy does Bannanny know me eh? Lol There are other possible toxic stuff tho, not just mold. If it's a newer home there's arsenic and formaldehyde treated carpets, or furniture, or some wall papers. Do you live near a toxic place? airport or plant? Geeze, there's a lot of stuff that could be the problem in & around the home...but yeah mold hidden or not I think is a big deal. A lot of us Morgies have had moisture/mold issues. I wasn't talking about mites or bugs at all. Even tho ya'll, bed bugs are on the rise, my company has a property that we just took over downtown and it cost about $30,000 easy to eradicate all the residents and the property of the bed bugs. Don't believe the hype that they're just on the east coast. Here is a thread about purpura and petechia we talked about quite a while ago. I used to be a major Fluke Queen tho...I'm pretty much over that but still, there are a lot of us, including me and my son that have had petechia at the onset of Morgs. lymebusters.proboards.com/index.cgi?board=rash&action=display&thread=4159At the onset of my Morgellons I had deep ulcerated lesions. Ugh I cringe going back there. Since the onset tho, like a year after I'd have some volcano type lesions too. Gosh, I'm so grateful that is over...what a nightmare. My daughter Arianna is 14. My 11 year old son Kado has autism and ah, he's a pretty sick kid. He was born while we lived in our sick place. All three of us and two dogs got hit HARD at the same time with Morgellons. We don't have any real morg symptoms anymore but it's been since the summer of '04 that we got out of our sick home which I feel was a major source. We were real sick tho, it was quick and a real mess. My daughter is relatively healthy, she had HS Purpura a couple years before the onset which is a relatively rare blood occurrence. My son and I probably have Lyme too, lots of symptoms but no tests...YET! Sorry to say it sister but yeah, you sound like your in the right place. We've got this one funny guy 'round here that I'm gonna keep on quoting whenever the opportunity arises!!! If I could just get the exercise down... If Urnovitz is right, we have to seriously rethink environmental health.
ah...... kill oppertunistic parasites, bacteria, fungi, detox, exercise, build immune system and avoid chemicals. Ed
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Post by bannanny on Apr 25, 2009 21:41:21 GMT -5
Oh sweetie, we all know that feeling of isolation. But another thing that's real important is that you do your best to "rise above it." I know it's not as easy as it sounds but this stuff feeds on fear and anxiety. Most diseases do ya know? So take a deep breath and know that you have help now. Most of us have been here for quite some time and we've learned alot.
As far as the contagion level goes, I don't see how it can be contagious myself. My mom and I went in on this place together and altho she's not always here, she's spent enough of the 5+ yrs. with me that I've had this to get it if it were. I often will go into town and stay the night at my friends too, cuz it's a 20 mile trip to town one way and I don't like driving at night and unloading all of my shopping then. None of them or their children or their childrens children have come down with it either. Altho it's really not my place to say if it is contagious or not, I just wanted you to hear my experiences with that ok?
Like I said tho, take yourself a good deep breath and keep the upper hand that you have by following what we can suggest ok? Oh, and fish oil is also an excellent thing to be taking!
You're gonna be fine!
love ~~ bannanny
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Post by Carrie♥ on Apr 25, 2009 22:19:09 GMT -5
Yeah Bannanny I think that's a good point!!! Don't stress, don't flip out about it like I did!?! It really only makes it all worser!!!
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Post by bessie on Apr 26, 2009 16:08:06 GMT -5
perplexed - Some of the information you will find in your research will be confusing and even contradictory... which really makes it tough! For example, some use prescription medications and swear they help, while others are as adamant that they make them worse. If I were you, I'd go with the suggestion to research jwf's protocol, things that are natural, cleansing, and strengthen your immune system. Nobody knows for sure what causes this, but most everyone agrees that toxins in the environment worsen it. Thank God you never did the chemical pesticide route! That is often listed as the exposure that preceded a Morgellons case. Of course, mold & mildew, harsh chemical cleaners, etc., are also implicated. Contact with dirt, soil, or sewage also often precede an outbreak. The best to you and your husband. Just do what you can to make your home toxin and chemical free, eat right, use jwf's suggestions, and let these efforts determine the outcome. You can have your indoor air quality tested for mold, etc. It is VERY hard not to obsess, especially when children are involved, but you will do neither them or yourself any good by excessive worry and panic. The type of thinking that helped me the most was to try to equate this to any other "chronic condition" that can be managed symptomatically. Of course, I want it GONE...but I have learned to settle for being virtually symptom-free by following sound, wholesome, non-toxic advice (btw - that also applies to any personal care products). I have a manageable life today...not the one I had before all this, nor the one I would ideally want. It's a matter of playing the best hand you have with the cards your dealt, and it can really be OK, or even better. Bessie
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Post by mrc on Apr 26, 2009 18:05:57 GMT -5
Perplexed, your symptoms are EXACTLY like mine and I definitely know I have morgellons, you don't have to have big lesions, that's kind of a myth really (in that Morgellons patients have big lesions). I bet as many don't have lesions (big open sores) as there are that do. Bessie gave you very good avice, follow it ...
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Post by perplexed on Apr 26, 2009 22:23:51 GMT -5
Thanks all for the useful information. I will slowly sort through it all and do my best with it. (The mind is not what it used to be.......another Lyme sign!) Bessie, I'm interested in what you say about chemicals in my home. We didn't allow the pest control people to spray anything, however, we did spread DE with Pyrethrin all over the place (except the mattresses) and coincidentally, that's around when we started feeling the creeping crawling feelings and getting the stabbing sensations and just recently I started feeling the electrical jabs (which I have had several times over the past couple years.) Prior to the Pyrethrin, we were just getting things that looked like bites for about 2 months.
Unfortunately, we do have some kind of mold issue in the house that we have been trying to get figured out for at least 2 years. It's only noticeable in the summer when it's really hot. You can smell mold in the back hall of the house. I can't believe what a hard time we are having locating this and I'm not sure what kind of a professional can help. I didn't realize that mold and chemicals was connected with Morgellons or Lyme.
Also, my cat has been shaking his body quite frequently. Vet can't find anything wrong (after 2 visits) and I treated him for fleas twice and it hasn't changed anything (he's an indoor cat). Has anyone heard of pets with this? If yes, could that possibly idicate infectous?
Sorry for asking so many questions in one post, but does anyone know if it's possible to have Lyme's cured after having it for many years and if yes, does the Morgellons go away in the absence of Lymes?
Thanks again - Perplexed -
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Post by bessie on Apr 27, 2009 12:53:50 GMT -5
perplexed -
I really wish there were clear-cut answers to all of this! The first area of debate is the Lyme-Morgellons association. Many are convinced they are related, others think maybe, yet others think not at all. I don't know; I only that I do not have Lyme, but I certainly do have Morgellons. Many report lessening of Morgellons symptoms when they are treated for Lyme.
It is possible that a number of factors can act as a "trigger" for a latent case of Morgellons to get expressed. Lyme could certainly be one them.
If you can smell mold, then you have a lot of it. Is there a source of moisture in that part of your house where the smell is coming from? A leak behind the walls, some connection with an HVAC system? I would search "mold detection professionals" or "mold remediation", something along those lines to track someone down who can help with that.
Unfortunately it seems most of what we know about associations with Morgellons outbreaks is based on what we ourselves report, not through objective research. In order for that to happen, much more would have to be known about the Morgellons disease process than is currently known.
Animals do get Morgellons, but contagion is yet another debated issue. Most seem to think it is exposure to the same evironment rather than transmission from person to person, pets, etc. But there is disagreement there as well.
Just wanted to mention that jwf, his wife, and his m-i-l all had Lyme and Morgellons, and his protocol was effective for both. Maybe John can add whatever else he did to rid his environment??
Bessie
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Post by bannanny on Apr 27, 2009 14:19:35 GMT -5
I'm sorry to have to say this, but all 3 of my dogs died from this mess. This is the first time in my life I don't have animals and it's definitely created an empty hole in my heart. But I refuse to watch another animal go thru this. I'm not saying your kitty has it, but it is possible. Mine aren't the only ones who died from this either, so just letting you know. You'll know if it gets to the point where your animal is suffering tho.
I could actually see the sparks coming off of all 3 of my dogs after awhile. They would jump up out of a dead sleep too and start running as if there was something they were trying to get away from. I tried everything I knew and I knew alot being I was a vet tech for years and have worked with animals my whole life. It broke my heart when they'd lie there looking up at me with a low constant whimper.
I hope the people here who have been able to help their pets will chime in and let you know what's worked for them. Sorry I can't give you any better news there perplexed. But just keep a close eye on your kitty... he'll let you know what's going on.
hugs ~~ bannanny
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Post by ibzahp on Apr 27, 2009 23:22:15 GMT -5
I don't get the big lesions for the most part. Since 2001, when I came down with this i have had to large lesions and mostly pimply sized ones and areas where I have fibers and specks come right out of the skin. Yes it does sound to me like you do have Morgellons. Welcome to the board. I believe I also have lyme but I don't know enough about that to comment. I think you will find this board to be a great resource. Welcome, ibzahp
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Post by jwf on Apr 28, 2009 2:57:54 GMT -5
Hi Perplexed,
Sorry to hear you folks may have Morgellons. We've had one Pekingese live through our troubles- he definitely had terrible itching.
My wife gave him Cat's Claw for a couple of months and then Olive Leaf Extract (liquid) that worked really well. He's very healthy today and lives a dog's life.
I'll ask her if there was anything else that was used for his recovery.
Like you, we used the food grade DE and put it in our attic- bugs just hate that stuff. At the time we thought a new mite might be on the loose. Also tried all forms of Pyrethrum-- this was probably our first clue we weren't dealing with any ordinary bug because it made things much worse.
Menthol crystals in sachets and diffused in an electric shell unit for about $15 -that was 5 years ago-
tinyurl.com/clc9gl
Get natural menthol from peppermint or the other major plant source (mentha arvensis- sic). It has always worked for us whether at home or traveling. Your pets will love it too.
We took back our fabric chairs, carpet, leather couch, and basically our home from whatever Morgellons is. Our home is an itch-free zone and was even when we were carriers.
Blue Skies...........John
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