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Thank You

Thank you to all who helped us with our medical expenses.

We will always remember your kindness.

Sincerely,

The Hausfelds

Annonymous Lyme Question .what causes the crawling feeling…like biting all over the body in treating lyme?..is it die off and the lyme being killed? .I’m in 7th month of treatment at the beginning I had it bad then it went away for a few months then they increased my antobotics and it came back mainly at night..i wondered if it is candia..but have been on nystin and probotics so not sure LH

I don’t know. Good Question NY
LikeBug bites TR

It’s neurological
Ms people get it too
But in our case infections cause it
I guess in neurons NY
Which bug is the culprit???

LYMIES CALL IT PUNCHES PULLS , I CALL IT TWITCHES, PAST 10 YEARS SINCE GETTING LYMES AGAIN 04 ,06 08 10 2 TIMES 11 2TIMES 12,ONCE 13 ….WHAT WE LEARNED BACK EARLY 90S ITS THE SIROCHETES ON NERVES ETC..BOTTOM LINE ALL MY LYMIES TOO IN GROUPS SAY ITS JUST A SIGHN THEY ARE STILL IN YOU….I HAVE THEM RIGHT NOW ALL OVER . SOME DAYS GONE ,I AM ON 2 ANTIBIOS RIGHT NOW ONE IS NEW,,,,GTS GS

I did two searches who knows.http://www.mdjunction.com/…/3207018-bugs-crawling-on-skin CK

Bugs Crawling on Skin
http://www.mdjunction.com
Bugs Crawling on Skin: I’m sure that this has been discussed before, but I am wondering… For those of you that experience the sensation of things

2nd search. http://www.medhelp.org/…/Crawling–itching…/show/1285420

Crawling/ itching feeling under skin – Rare Diseases – MedHelp
http://www.medhelp.org
Please help me.. I have started feeling like there is something crawling under m…See More

I’ve had it all last 6 days to 2 weeks all just getting worse TR
http://m.youtube.com/watch?v=e3A8_6JeKoo&feature=youtu.be RB

Lyme Disease or Oral Spirochetosis
A husband, wife and their child is diagnosed with Lyme disease. The all had oral…See More

Maybe morgellons parasites AG
This is the best pic of spiros fast forward to see or listen to the whole video RB

Could be neuropathy, which causes some weird sensations like that MBC

Morgellons? HW

This condition is formication. Causes of formication include normal states such as onset of menopause (i.e. hormone withdrawal). Other causes are medical conditions such as pesticide exposure,[3] mercury poisoning, diabetic neuropathy, skin cancer, syphilis, Lyme disease or herpes zoster.[2] Formication can also be a result of alcohol withdrawal in alcoholics, along with delirium tremens, and is often accompanied by visual hallucinations of insects.[2] http://en.wikipedia.org/wiki/Formication LH

Formication – Wikipedia, the free encyclopedia
en.wikipedia.org
Formication is the medical term for a sensation that exactly resembles that of s…See More

CNS inflammation does that. NB

LIAS THE LONGER YOUR ON ANTIBIOS GETTING DEEP INTO TISUES THEY DIE OFF ,IF ITS MUSCLES SOMWHAT TAKE MAGNESIUM CALCIUM COMBINBINED. I ASKED THE QUESTION IN LYMES GROUP DULUTH OF MOSTLY LATE STAGE LYMES I SAID ANY OF YOU HAVE TWITCHES ALL OVER.THEY ALL YELLED PUNCHES PULLS.KILL BACTERIA THEY GO…………………..INFRARED SAINAS THE BEST AND HOT TUBING 106 20 MINUTES KILL SOME HEAT SENSITIVE SPIROS…GTS I HAVE NEURAPATHY 15 YEARS NOW ITS NOT THE SAME. GS
It’s my understanding it’s a CNS reaction from the pathogens. I had it horrible and with 4.5 years of treating so far it did go away. KC

From my experience, it’s typically a sign of Toxicity.

Remember that your Skin is the bodies largest organ and so it will use it as other organs to detox through. So… The quickest way to achieve relief from “creepy crawly” skin is to detox it.

Dry Skin Brushing and some form of sweating (my preference is the Infrared Sauna) will bring tremendous relief AT

Morgs KS

I suffered with this for years before I got lyme. I cant say about any of the comments above, but what I had. it was the creepy crawly legs and sometimes arms. only or ususally happens when u are settling down for the day. as u are lying still in bed, then u feel it coming. u have to move ur legs or scream…. boy do I relate. if ths sounds familiar. u may just have restless legs. very common and millions of folks suffer from it. it will take a prescription, but it is totally controllable or I would still be screaming. I have lyme too. this on top of lyme, omgoodness. not good at all. I take merapex, also sentment and there is a new drug out. just tell ur doc the symptoms and ask about restless legs. he will know the right drug depending on what else u are taking. after that, my legs may start to jerk and feel crawly, but only till I can take my Mirapex. hope this helps. because we have lyme, we think ever single thing that goes wrong with us, we think oh my, its got to be co infections or tons of other things, when its really something simple. however I will say, most of the time, it IS related to lyme, and that whole saga is way over all our heads unfortunately. RF

MS PEOPLE’S are NO DIFFERENT ONLY WORSE IN MY PERSONAL OPINION IN A MAJOR WAY AND ONE GOOD REASON – US MS’ers DONT HAVE A ANOTHER DISEASE ITS ANOTHER CONDITION of the DESTROYING OF THE MYLEIN SHEATH COVERING OUR NERVE FIBERS AND THE BARTONELLA AND LYME AND MYCOPLASMAS BABS SHINGLES HHV-6 EBV CMV CMS STREPTOCOCCUS B CLAMIDHIAE PNEUMONIA AND MYCOPLASMA PNEUMONIA…. POST MENOPAUSAL symptoms SINCE 28 PAST 6 YRS etc…. MAJOR THYROID ADRENAL LYMPHATIC ISSUES AND GUT AND CANDIDA SO ALL THOSE PLACES THE MYELIN IS DESTROYED IT THEN CREATES A LEISION FROM WHICHEVER ONE OF THESE PARAISTIC BACTERIAL OR VIRAL INFECTIONS or all to be cause creates the CONDITION to be DX with MS-(not always from Lyme etc… -majority) MS-MULTIPLE SCLEROSIS…. “MULTIPLE MEANS MANY” “SCLEROSIS MEANS SCARRING OF CELL,BODY, OR PART, TISSUE….. SO FOURTH and disabilty acknowledges that this unknown! VERY UNEXPLAINABLY NEUROLOGICALLY caused CONDITION IS NOTHING ANYONE WITHOUT IT CLD EVEN IMAGINE BC WITH SEVERE NEUROLOGICAL INVOLVEMENT SOME BEING PERMANENTLY DAMAGED AREAS…. Its even MORE HORRIFIC than our horrific days all together -metaphorically speaking! sorry totally didn’t mean to come off snotty at all here just read the reference to what MS was not so I felt compelled to share what it actually means! Its a BIG PHARMA type society with top exec making millions a year…. Knowing about what we are really going through but honestly not many who got the nack for really getting someone better the better way…. ” We teach each other to seek out the other”…. ~me CS

When I had this symptom it felt like a ant farm was crawling under my skin. It wasn’t painful but annoying amd strange. KC

I was just complaining to the LLMD about this today! He didn’t specifically tell me what it was from though….maybe because it isn’t that simple. He did give me something for candida just incase but he also is doing more bloodwork. CO

SERIOUSLY GUYS just ask about restless legs. cant hurt to ask right RF

If you’re taking niacin, you may be flushing. Happens to me almost everyday. JC

I have had this every since Lyme. I blame it on small bugs and no see’ems but I really think it is Lyme or result there of. Now, my doc also told me that candida and yeast can cause skin to itch. I know that sometimes it can also make skin crawling. But I have heard that Lyme can cause this from the nerves. All I know, I have watched my arm crawl and feel like a bug. I will get the flash light and my little hairs on my arm will be moving and I can’t see any bug just my hair moving by itself. After it stops, the feeling goes away. I have had times of skin stinging just like something piecing my skin. All these symptoms I never had before Lyme. It is frustrating. MA
So M you think its the b lyme? AG

I have been diagnosed with restless leg syndrome, but I feel the skin crawling feeling on my arms and back too. CO

All I am saying I never had this problem until I had Lyme. Maybe our immune system works different now or is over stimulated I don’t know. But the skin crawling, bugs crawling,stinging feeling seems to be symptoms associated with Lyme in some way. My doc said that Lyme can effect the nerves. I am still open to any ideas. .MA

mold toxins, such as that from stachybotrys can cause this KB

Seems like many say morgellins parasitee AG

Well, anything is possible. But for me It comes and goes. Just like Lyme does. It can bother me hard for a period then it will get better and then return later. So strange. MA

Please watch the video so you will know whats going on inside u you can see the spiros spinning moving tell me that wont cause sensation RB

It’s SO unbelievable my friend AG

Night is when they are most active RB

Yes AG

I believe it’s bugs crawling & screwing up our nerves. CM
I had the issue & at the same time, My nerves were not working properly .
I was twitching & felt those creepy crawlers. Frigging bugs.
When we kill them, we hurt . The bugs release a toxin & cause Fibro . Pain everywhere.
My opinion.
Not easy , alm we go thru!
But gang in there. It does get better CM

I think it’s parasitic do agree with Renee Bodkin. Recently heard it has something to do with thyroid/adrenal. Unfortunately what and where I heard it… Can’t remember due to brain fog. If I remember will let you know. MB

Love this cell, not easy, But we all seem to go thru this CM
Hang in There. It does get better CM

I think if it were nerve issues , one would feel it a majority of the day or night this seems to come alive for me at night and not every night… MB

Also in my 7th month on Abx. Creepy crawling from 10 PM til 06 AM. I believe the bugs are triggered by hormones. When your inner clock says bedtime their inner clock says wake up. Same goes with stress hormones. The disease picks up speed when we are stressed out. So when the bugs get active and find themselves surrouded by Abx the war starts. I totally agree with C HW.

I took a parsite drug for three days and it got v v bad at night did try antihistamine thought that helped ET

mine starts at night or when I am sleeping at night. If I nap during day I have no trouble. so strange…MA

http://m.youtube.com/watch?v=wZv4GUeKuPI RB

Electromagnetic frequencies stun spirochete bacteria
Video brought to by http://www.lymebook.com/courtesy of Dr. William Nordquist, …See More

Review parasite activity they are always active at night full moon makes it worse RB

I had this a lot in the past then it stopped. Now back the last week also tiny cuts. JF

Morgellons – rife helps KR

What frequencies ru using K ? JF

Hot shower then cold shower TR
Then good homemade cream
Works wonders …See More

Homemade cream T ? JF

I think it’s neurological, part of the herd/die-off. But I feel like I’m crawling out of my skin! KH

Coping Advice
Home > Coping Resources > Coping Advice > Letter to Normals

Letter To Normals: Getting Others To See Your Symptoms
by Ricky Buchanan *

These are the things that I would like you to understand about me before you judge me …

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day flat on my back in bed, and I might not seem like great company, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for five minutes doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover. Imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, “sitting up,” “walking,” “thinking,” “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!” If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute. If this happens, please don’t take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct — if I could do it, I would.

Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now — it can’t be put off or forgotten just because I’m doing something. Fibromyalgia does not forgive.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Fibro then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro. If something worked, we would KNOW.

If after reading that you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor.

Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you — people who are not sick — for many things.

But most importantly, I need you to understand me.

(I did not write this and am not sure who did, but it’s great!)

What is Lyme Disease? Lyme Disease Information

Plea for Work from Karen and Tim

lisah April 15, 2014 Fundraisers

From: Karen Elizabeth Hausfeld

Tim’s contract is ending, and the powers that be have laid him off effective May 15. He thought he had 9 months to find a job; now it tuns outThey have hired a proposal writer as a transition manager to transition his 50 employees so the government (they’re under a mandate) so we’re under a real problem, a hard and fast deadline. We lose our income (it’s all him…) and our medical, life insurance, etc.

I am asking for your help….I’m asking for you to reach out to anyone you know, whether they work for government or contractor or other company, for anything they know available. He has extensive managerial experience, a wonderful resume, and specializes in IT security, other types of IT issues, computers & telecom (has a Master’s in that, and a Bachelors in Electrical/Electronic Engineering) and of course he has that rare combination of technical expertise and ability to work well with people. About the only thing he couldn’t do is write code. One of his early managers said “There’s nothing that Tim couldn’t do!!”

We need help. Our medical is so expensive and we’re burdened with a $3900 mortgage and a car pmt. Two car pmts til Aug. Those are our 2 reliable cars. We have 2 other very old cars worth nothing, which we use when the others are in the shop. There are 4 of us depending on him: Kelley, Sophie, Tim and me (and often Tony.) I am willing to discontinue my treatment for as long as it takes, but that mortgage, car pmts, gasoline and food add up and they are. We can once again cash out his 401K but there’s a huge tax penalty paid up front, and it’s under 10K b/c we were just able to start again 2 yrs ago, AFTER we went thru losing it and everything else to get out from under debt.

Anything you can send our way will be very much appreciated! BTW, he is a US veteran if that helps at all.

Thanks so much, Karen & Tim

If you are interested in donating to help Karen and Tim through this rough patch please donate at paypal account khausfeld@lucketts.net

Coping Advice

 

Letter To Normals: Getting Others To See Your Symptoms

by Ricky Buchanan *

These are the things that I would like you to understand about me before you judge me …

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day flat on my back in bed, and I might not seem like great company, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for five minutes doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover. Imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, “sitting up,” “walking,” “thinking,” “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!” If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute. If this happens, please don’t take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Fibromyalgia <Lyme, Lupus, etc.> may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct — if I could do it, I would.

Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now — it can’t be put off or forgotten just because I’m doing something. Fibromyalgia/Lyme/Lupus etc. do not forgive.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Fibro then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro. If something worked, we would KNOW.

If after reading that you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor.

Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you — people who are not sick — for many things.

But most importantly, I need you to understand me.

 (I did not write this……  But it’s great! …..Karen)

Lyme QuestiOn: Why do showers make us so sick? LH

It makes my blood pressure bottom out at times or makes me feel like I am on fire. Right now I do okay but thank God I have a seat in my shower.AR

thats what i think it is too…LH

detox DH

I use to black out in the shower. I’ve had that happen to me off and on since my teen years. AR

I just think it takes so much out of us standing like that LM

I lean against the wall LM

i would come out and feel like my blood was gone from my body NN

heat? LE

Yeah I agree that’s why sometimes I sit! AR

otherwise I cant stand LM

i wish i didnt need 30 mins to recover :( KB

I hate showers….LM

I agree…I can’t take a hot one, my body temp. doesn’t regulate very well. AM

I feel like I ran a marathin…LM

yep i can relate to all of you LH

omg!im not going crazy!good question NN

mine either I have to keep a fan on me at all times in there. LM

or I overheat LM

Used to have that problem…it’s gotten a lot better. Still I only take one if I have a lot of energy. Usually I just take a bath instead. :/ JS

i have handles all over the shower to help me stand…KB

Hot shower I get very sick…. But it takes alot… Shaving and stuff… It looks like a half a day job… : / KZ

Ok gettin in and out of the tub is harder for me than a shower…LM

I thought good HOT, sauna-like showers were good for killing off the buggers??? When i was real sick i would make my shower so hot that hubby didnt know how i tolerated it… it felt good. Mayb u feel a herxing effect???? JT

M had iv ivig,she was paralizes before the iv the bacteria must eat our plasma!yes thats it!wow NN

This is why we smell. LOL just kidding JS

herking toxins being shot out from die off NN

I can’t close my eyes to shower… vertigo.DS

I get panicky and feel claustrophobic can’t breathe too hot – I want to cry when it’s shower time PB

Showers don’t for me. Baths do. BH

I cant breathe either…the air gets too stuffY….LM

anyone feel like thier blood was drained… NN

I have to shower with the curtain half open and towels all over the floor and a fan…LM

Wow i had the same!omg NN

IDSA HELLO oh were crazy making this up! NN

We all need to go to court!we all cant be faking the same issues! NN

Sorry L got off the topic there! NN

I am so glad that I am reading all of your comments. Until I hooked up with L (haven’t since high school) I didn’t realize how pervasive and debilitating Lyme disease can be. You are all in my thoughts and prayers! KR

like peas in a pod…..LM

If I was single what a great job..”Shower buddy” for Lymies!! Lol JR

(JR) is always looking for the positive! Lol CU

The shower is a knowing fact that the heat will make the bacteria stirr up . Give it a chance I take wicked hot showers do lean and sit in tub its exhausting but I do feel better next day . Try it at night in the morning i feel worse when I take one but it stirs up activity.From what I was told they don’t like heat . I loved the summer and find i Have a much harder time in summers now . Sucks to put it midly…SG

I offered the job to someone today Jeff.but i guess he didnt want it :( LH

Foolish person… : ) JR

or..maybe wise LH

Sophie is 6 months old…

and growing & teething like mad! Her 2 bottom center teeth are all the way in and all the others are on the move too. She cut those at 4 1/2 months, just a month older than Kelley cut her first two. The time is going so fast….I want to stay “Stop! Don’t Grow anymore for awhile!” She loves all sorts of hand games, like “Sophie goes down, Sophie goes up” “Pattycake” and “This is the way the pony goes” and of course her first fave, “Peekaboo”. She giggles and it sounds like an angel. I swear, this child is so smart, good, special, and beautiful…has so much personality, that I feel like that old song “Close to You” was written for her!! (On the night that you were born the angels got together and decided to create a dream come true, so they sprinkled stardust in your hair and shone the moonlight in your eyes of blue!!”

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