LymeNetEurope New Research Link - Ultrasound Disruption of biofilms and DNA altering Lyme liposomes discussion.

 This site has wonderful posts. Europe has less reluctance to address the Lyme condition, and many


http://www.lymeneteurope.org/

 The discussion on DNA altering liposomes &  ultrasound's excellent  affect on Spirochetes.

http://www.lymeneteurope.org/forum/viewtopic.php?f=5&t=3627#p36485

Heart Symptoms

Been having scary and tiring heart and blood pressure changes.
I'll be back when I feel better.

Similarity in Multiple Chemical sSensitivities and Lyme Disease Symptoms

6/16/13

Started the disability form - got to page 3 and I musty have made a typo or typed in something wrong with my brain fog, because a red bordered sign came up and said I had made an error in the info I typed in which is in conflict with information they had. Gave me a phone # to call, but I called my claims representative whom I hope will call back. I was so optimistic at first. She sounds like a lovely helpful person who is really interested in helping those in need. However , she’s a single mom and has a very demanding job and I haven’t received a reply to my last e-mail or phone call so now, I feel as if I’m on a deserted island with a monumental task to perform with my addled brain and memory and energy defecit.
I also have multiple food and chemical sensitivities and can get very sick in a moldy car (and my poor house which takes in water in the basement, or in Walmart (God/ess help me when I’m in there). I have assume an almost commando soldier attitude just to get through it. I make a beeline to through the store to the pet department where I get kitty litter. It’s on the outside edge of the store and this gives me a reference point - the inner perimeter of the huge store becomes my safety zone from which I make inroads to the departments I need to go to. Then of course comes checking out which with a lyme brain is difficult and confusing since I use a debit card and am on high alert to not forget to record it as well as often  battling brain fog. By checking out time my nervous system is overloaded and I bumble and fumble through check-out until I face the next challenge - finding my car.
I now need to park in spaces next to a noticeable reminder - like a sign that says row 5 or near the garden entrance - sometimes it helps.
Just joined a group on Facebook for people with chemical sensitivities which I’ve had for some time. There was an article about a particular man in New Zealand who had  the problem and his story could have been about me.
It left me wondering about how many undiagnosed Lyme sufferers are out there who have never even thought of being tested for Lyme Disease. This guy was an avid outdoors person before becoming ill.
Here is his story. Check it out.

http://chemicalpoisoningnz.webs.com/otherpeoplesstories.htm.

6/13/13

 

Lyme Disability Blues - Beginning the Journey

I highly recommend a journaling of your health history to jog your memory and to help chart your medical history for your application. If like me your memory is heavily impaired - check out diaries if you kept any - and correspondence if you save letters. Anyone beginning this journey ask for all records and lab work and file it. One tends to overestimate the reliability of medical institutions in saving records.

My mom told me that there is Samurai blood in my lineage. Im in sore need of that ancestral courage and discipline at this time in my life. As I wrote in an earlier blog, Jason Mraz has a song which I posted called Thius IS The War Of My Life. And it is the war of and for my life. I call on my ancestors to be my allies.

Back to the saga of my physical health (or lack of)…
 I’m writing this in part because I’m considering trying for disability - at the urging actually of a government employee who works in the field. I’m having a bear of a time trying to remember anything. The claims representative I spoke to is a sweetheart, helpful, encouraging… But I have NO memory. She said to just estimate …  Hahahahahah  !!! 
With how this disease has manifested in me - especially by decimating my memory that’s impossible. Really ! Even thinking of estimating I drew a blank.
My wonderful claims representative (she really is) said just start, you can go back & change things. But I was paralyzed by fear of screwing it up somehow, or , with my spotty memory - making it seem like I was making things up.
I called our local health center so I could get records to help jog my memory. Since my Naturopath estimates I most likely have been bitten multiple times, and have had lyme disease for a long time - I’ve strangely enough felt less worried about my health.
What !?!? 
No, really… For years I had one weird symptom after another and now I at least know why
 I always had the hardest time applying for any help of that kind feeling I should be self-sufficient. Even when I left my first husband, I told him “I will take our child and be responsible for her. Try make a good life for yourself and she’ll always be a part of I…  I didn’t see how a young man could support his own life and that of someone else - another household. We managed. He became a lawyer in Texas. Never did help me out, although I once did ask him if  he would now help me get some schooling so I could make a better living. There was a big silence and a change of subject. He did really help our daughter a lot after she got out of high school though so I’m grateful for that. He died in his fifties of Leukemia and I’m so sorry not to have seen him find love and a close relationship again before he passed over.

So, I called our local health center which I used during my years as a young mom and asked them for my records. The two doctors I saw are no longer there. One is retired. I asked if they still had records. You’d think I was asking them to go on an archeological excavation for prehistoric artifacts. I’m 63 not 103.  When the young woman called me back I was discouraged to hear she could only find 4 pages of what she thought were nurses notes - some of which were illegible.

I explained that I was considering applying for disability and had chronic lyme which had decimated my memory and that I had seen Dr. S who had delivered 2 of my babies. That sparked a personal connection as he had delivered her as well. “Oh maybe you know my sons ?…” etc. I didn’t do it in a calculating way. I’m just friendly and communicative. It sparked her interest and a desire to help, and she called back later saying she’d gone back to the basement of the health center and found 40 pages of records ! 
They’re quite difficult to read in many places and full of errors but there’s still a distinct pattern of anxiety, inability to breathe, insomnia, and painful joints and musculoskeletal pain.  In one place it says “denies migratory pain !  That’s how they record things denies or admits are terms used in the records for when they question you. Jeez Louise !!! I told them visit after visit that the pain traveled from shoulder to elbow to wrist and from one shoulder to another. I called that traveling pain “The Traveling Wilburys” You may remember that was a band with George Harrison Bob Dylan Roy Orbison & Jeff Lynne, Harrison’s co-writer.

It began with swollen painful stiff knees in 1994 and went on to having to have my knees drained several times - the senovial fluid tinged with dark red blood the second time.

It went on to hip and back pain ankle & foot etc. If that’s not migratory pain I’m not sure what is.

I called the Naturopathic Clinic where the Epstein Barr Virus and Fibromyalgia and Chronic Fatigue was diagnosed and the doctor is no longer there. I asked for contact info - called and she had no records from the clinic where I saw her. They had none of her records either. I do have some lab work papers in my own files. The Osteopathic physician I saw Dr. Woodcock from Bennington  is no loner there either. He saw me during the time in which I woke up one morning and couldn’t roll over in bed. I had to roll myself over by pulling on my nightgown and then sitting up and getting up was a slow torment. It just happened one morning and lasted for a long time. That’s why I was referred to the osteopath who gave me a shot in my spine, some adjustments and exercises  but nothing helped. I had to use a cane and I was only in my early forties.
I’ve been taking notes and trying to create a sort of map of my health history which I can then transpose to the application form.
I decided that this morning I am at least going to the application site and filling out my name and basic info. A dear lymey friend urged me to do this. I don’t know why but I’m afraid that being so inept on the computer sometimes I may get caught up in some error/electronic loop. What a wimp I’m being. I’m getting off right now and just starting it !

More Great Links for Lymies and People w/Chronic Illness

http://www.chronicbabe.com/
http://www.butyoudontlooksick.com/
http://www.advocacyforpatients.org/resources.html
http://www.spirochicks.com

from spirochicks website - a link to a post on gut problems resolved with powdered yogurt starter which resolved her lyme-gut problems "Well I'm here to tell you that Progurt has changed my life." is how she put it  http://www.spirochicks.com/2010/05/dramatic-gi-changes-with-progurt.html.
There's a loink to a site where you can buy starter to make the progurt. Don't be put off by the price.  Read my comment on there on how to use one sachet and then make subsequent batches froma half a cup of  the yogurt you made and milk.

LYME DISEASE CAN SET UP CAMP IN YOUR MOUTH !

 In the last place I blogged I had  43 followers with whom I developed a good rapport. This blog appears to be only read by me. I've always been an avid diarist so this is just an online diary for me. Still I feel badly that people with Lyme disease are not tapping into some of the excellent  links and info I've found which could help them. Oh well, I will continue this blog as it's a good central location from which I can send and share with other Lyme patients I know, and if a single Lyme patient is helped by anything on here - even if I never know about it I'll be ' subconsciously' glad !   ;-)    .

A few days ago we put in our vegetable garden & some blueberry bushes. Paced myself and had Bob's (my husband's) help which is wonderful as he's very energetic. He accomplished a lot ! That night I couldn't carry my water glass in my hand, Had to place it against my body and press against it with my arm and elbow as I walked down the hall. I didn't use gloves or a hand shovel to make planting holes. I love to have my hands directly in the earth as the land had been tilled and was reasonably soft The next day my hands were hurting so much they felt like painful gloves. 

 From an article in Public Health Alert - Investigating Lyme Disease and Chronic Illness in the US.


http://www.publichealthalert.org/Articles/marybudinger/lyme%20in%20mouth.htm


" Holistic, natural medicine tends to overlook what is probably the number one source of the body's toxins - the mouth. The infectious mechanism was initially documented by Dr. Weston A. Price, chairman of the Research Section of the American Dental Association from 1914-1923. History tells us the ADA, however, wanted to promote root canals as a new service and never moved forward with Dr. Price's well documented research.

Some biological dentists have studied Dr. Price's work, including Dr. Andrew Landerman of Sebastopol, California. He finds that Lyme and many other chronic diseases are fed by the unique bacteria that develop in root canals and where teeth have been extracted. Dr. Landerman granted us an interview " :

I researched Dr.  Landerman online  and saw that his license had been rebuked due to health issues, visual and cognitive.  When I read the interview I saw he has Lyme Disease and assumed that his issues were similar to mine and those of friends with Lyme Disease. He is attempting to be re-instated.

When asked if he sees many people with Lyme he replied:

AL: "Some people of course come with the diagnosis. In others, I see Lyme in their symptoms. They may have swollen joints and other chronic conditions that are suggestive of Lyme. It is not the same with everyone. It depends upon their weak spot. Where they have a weak link, Lyme will affect that area. It is my experience and that of many others like me, that Lyme at this point in time is not a pathogen that can be eliminated. Rather we must seek to manage it holistically " 

I've come to that conclusion as have many health practitioners from varying practices. I've stated it on this blog  before.

This doesn't have to be a horrific giving up sort of conclusion. I find it liberating. I'm not making myself sick with long strong antibiotic courses  and protocols which cause severe herxing and weakening and debilitating reactions. I'm using gentler approaches which I've written about.  I will share the experience of, and results of my self treatment  as I go along. 

Diabetics and people with thyroid conditions can learn to live with them. I've surrendered to and accepted the fact that I don't believe that those of us who have chronic long standing Lyme as I have  can oust all spirochetes from our bodies. We can however learn how to build our health up to learn how to live with it as well as possible. I intend
I've surrendered to this concept and accepted it. For a while I hyped myself up into believing  that I could beat Lyme and eradicate all spirochetes from my system. With their incredible survival mechanisms and adaptive possibilities - let alone their screw like structure and ability to survive camouflage and  thrive in the deepest recesses of our bodies .  In order to totally eradicate their presence it's my personal opinion that one would need to kill the host !
I choose to live !

The Sky Is Falling - Lyme Disease & Hypersensitivity

 


I’ve always felt other’s misfortunes deeply. In Italy as a child I would agonize over the paintings of The Stations of the Cross in church. It’s a series of 12 paintings which depict Christ’s carrying of the cross through town to the hill where he was said to be crucified. The paintings depict a young Jesus  being stoned and nailed to a cross, hung and stabbed. I identified so much with his being rejected and abandoned and undefended.
When I was 2 my family had had to leave me. Being away from primary caregivers feels life threatening to very small children and that’s why they sometimes cry so desperately. There is a great gift in sorrows and losses at an early age and I know that the heart shattering experience of having everything and everyone I’d known in my life suddenly disappear has made me with deep and strong empathy for others. At times I’ve felt as if every sorrow and loss in the world was also mine.
Lyme Disease has accentuated this sensitivity.
A psychic once called me a hyper-empath and this resonated as truth. This morning I read about Chief  Raoni weeping after being told that the president of Brazil had Ok-ed  the building of a power dam which will displace 40,000 indigenous people and a huge portion of our Earth’s biology - (flora and fauna. When I read of it and saw him weeping I felt a contraction in my solar plexus and a deep personal despair.
Maybe in part it’s my sincere feeling and belief in our interconnectedness which makes me feel everyone’s misfortunes so deeply.
In one of my last posts I mentioned that Lyme, like everything in this dichotomous life duality of  ying and yang and positive and negative  has brought some gifts. One is that  I’ve literally “lost my grip” on many things and broken them, and since my spatial  and cognitive sense has changed I’ve been clumsier and hurt myself. This seems like a dubious gift, but I find myself exquisitely slowed down into being more aware of my actions and movements sometimes, even in washing dishes. We bought some square plates recently and they chip easily in our small kitchen’s somewhat diminutive double sink.
Mindfulness is one of the gifts this Lyme experience has heightened in me. It could do the same for other Lyme patients.
What I need now is to learn how to slow down and get this ‘ extreme ‘ mindfulness and awareness to work in my favour instead of against me. It helps me to be aware and mindful but when it crosses the line into the  unfiltered barrage of impressions and feelings which the impact of spirochetal activity and by-products in the central nervous system can elicit  I feel like a runaway train of emotions and unpleasant physical sensations.
 
What follows is an illustration of one of my over reactive episodes
(Not sure if this was necessarily ‘over’ reaction. The thing is that the nervous tension over things which happened and the length of time that I was in a state of heightened arousal was longer than in the past. This may be due to the fact that the tick bite I received in September of 2012 was a re-infection and many believe that these re-infections in Chronic Lyme can be severe).

Friday I had an appointment with my Naturapathic physician, Samantha Eagle in Brattleboro Vermont. I have a deep liking for and trust in Samantha, so I didn’t have the nervous “going to the doctor’s”  feeling that doctor’s appointments sometimes bring about.
When I opened my door at 8 to let my dogs and 2 cats out I saw a power cable had fallen from the house across the street where my son lives, over his car and was lying across the road. My first thought “Hot dog ! Don’t want the dogs (and cats) electrocuted. I go over and pick up my son’s dog and walk him with mine in the morning and that was an added concern on this morning.
I had to : call my son, gather the cats back in, contact the power company, contact the association of the housing complex I live in, try to set up some warning for drivers, shower & eat breakfast, call the doctor’s in case the cable was not fixed in time, walk the dogs, contact a friend who was ill to whom I was bringing some medicinal herbs after my appointment  and get to the doctor’s half an hour away in 3 hours.
I got rattled. That seems understandable to me, but the length of time I remained rattled was inordinate. My blood pressure was up 140 over 80 something I think. That kind of prolonged response o stress can release very harmful stress hormones into our systems and damage our adrenal glands heart and  general health. For several days after I monitored my blood pressure and it was back to it's low 114 to 120 over numbers in the 50s & 60s.
I’ve been in this condition before. Dr. Eagle thinks (and I agree) that due to my medical history and diagnoses I have been bitten multiple times and have had Lyme Disease for a long time. My estimate is at least 30 years if not since childhood. It’s after the birth of my son Ben 31 years ago in 1980 that my health took a nosedive. After my 6 years of being the single caretaker for my mom who had Dementia and died in our home in 2005 my health took another major nose dive and I become unable to work as I had before.

So what will I do about this hypersensitivity and inordinate stress response ? Well, I’m lucky to have tools and to have learned skills which can help me to explore and modify this. Self hypnosis, meditation, behaviour modification, guided imagery,  journaling, all have been paths I’ve traveled on before with success and good results. They’re part of my life but have taken a back seat to the more physical aspects of Lyme which I’ve been addressing.
It’s always a mistake to address a whole - separately. When we concentrate too much on the mental, physical or spiritual we become like an imbalanced footstool which cannot give up the support we need. Personal and spiritual integratio  must keep pace with my physical healing. And yes, although I’ve said that I don’t believe we can ever truly remove the presence of spirochetes in our bodies I do believe healing and living a healthy joyous life in spite of this is possible.

LIVING IN THE MOMENT - ANOTHER LYME ANTHEM

http://www.youtube.com/watch?v=l8TS8hMpxCw

Another Lyme anthem for me. There are many messages for me in this Lyme experience and one of them is the preciousness of every moment. This is something I learned with the cancer scare 31 years ago when I was told that if I didn't abort Ben and have a radical hysterectomy I would die. Ive taght mindfulness meditation in my Tiep Hien  classes in the past, but ocassionally in spite of that I lose my hold on my connection with the present. Whenever we waste time awfulizing  & brooding over the past, anticipating calamities and worrying about the future we leave the precious  present moments vacant and unoticed. 
http://www.youtube.com/watch?v=l8TS8hMpxCw
Love these lines "I'm living in the moment
I'm living my life
Just taking it easy
With peace in my mind
Got peace in my heart
Got peace in my soul
Oh, wherever I'm going, I'm already home."
One of Thich Nhat Hahn's  grounding Tiep Hien meditations I love best is:

 "Breathing in ... I have arrived. Breathing out ... I am home." Do it when you're out walking or rushing to work or racing home ...

REVIEW OF SHORT & LONG ANTIBIOTIC THERAPY FOR LYME PATIENTS OXford University

http://m.cid.oxfordjournals.org/content/45/2/149.long

Note that there is a possible conflict  of interest as the author of this paper is a consultant for
Q Med RX

After much research for months I'm still reluctant to allow myself to be put on antibiotics again.  While I believe in the life saving eficiency of antibiotics in many instances I strongly question the sacrificing of the natural balance of beneficial and harmful bacterial population in the body through prolonged antibiotic prescription.

LIST OF LYME SYMPTOM FROM A DESPERATE 21 YR. OLD WOMAN

Found this old post in a Lyme Support chat forum. How sad to hear of a 21 year old with all these symptoms. I've had all of them at various times. Her noting the severity of symptoms increasing after alcohol use is something to consider. If I got too festive at a family  gathering have more than  my customary 1 or 2 glasses of wine or 1 drink,  my symptoms worsened or I had strange scary health episodes. I choose to see this as a call to clean and moderate living and have made it a point to not get too festive that way . Have you noticed a worsening of symptoms after drinking alcohol ?

						09/20/2007 09:11 PM Desperate for an answer...please read!!
michele611 Posts: 5 Member	Hello everyone, I am a 21 year old female from Long Island, New York, although I feel like I have the health of an 80 year old woman. I go to college in upstate New York and just began my senior year. This past November, I experience my first of many strange episodes. I was driving home from school when all of a sudden I felt this miserable sensation throughout my body, almost like a hot flash. It felt as if a venom was traveling through my veins from head to toe. I felt as if I was on the verge of passing out and my heart was racing. I was very nausea, dizzy, and became extremely weak. I called 911 and was taken to the hospital, being released later that day with "anxiety". I didn't think anything of it, and went on with everyday life. However, a few weeks later, the same thing happened and this is where my 10 month journey began. What started off as these random episodes has turned my life into a living nightmare, so much as that I am considering withdrawing from school. These episodes have turned to start resembling seizures (I have severe jerking of my limbs), but do not fall into the common criteria for a seizure. From November until now, getting worse with each month, I feel HORRIBLE everyday. I have had such strange sensations and symptoms that have lead me to over 25 doctors of every type imaginable, and numerous visits to the ER. I have recently pieced together that these episodes occur only 24-48 hours after alcohol use, and since I have stopped drinking, the episodes have stopped. However, the misery that I feel everyday has only gotten worse with time. Although I was tested for Lyme by my Neurologist back in November and had a spinal tap this past July to which both were negative, I FINALLY tested positive 2 weeks ago when I went to an infectious disease doctor. Although my ELISA, PCR and Western Blot iGg test came back negative for Lyme, my Western Blot iGm test came back positive. This doctor still refused to put me on anti-biotics and insisted that I come back in a month to re-test. My mom went to a Lyme Disease Association Forum out in Riverhead and researched a bunch of ILADS doctors considering my infectious disease doctor was of no help. I have recently gone to an ILADS doctor who took a series of bloodwork to be sent to Igenex, but it won't be back until next week. I feel so confident that I have Lyme due to the uncanny similarities of my symptoms although I never noticed a rash, but are looking for any reassurance as to whether anyone else has had some of my symptoms...here goes the list (I might be here for a while ) Everyday Symptoms: -CONSTANT MALAISE (I can't put my finger on what feels wrong but I constantly feel like something just isn't right) -Visual disturbances (floaters, flashes, peripheral shadows, what looks like millions of tiny particles-- it looks like i can see air, words moving on paper while reading and looks as if the floors is moving like waves sometimes) -Ringing, pulsing in ear -Feeling the need to "pop" my left ear, pressure -Uncontrollable muscle spasms (hundreds a day all over body) -Extreme eye twitch in upper eyelid of my left eye -Creaking/cracking in the base of my skull/neck that is getting worse with time -Dizziness/the "spins" sensation -Head rocking (my head shakes up and down in what seems to by rhythm with my pulse) -Throbbing/pulsing sensation in my head/neck/face(it feels like I can feel my pulse in my brain) -Shaky hands, arms, muscles (My hands tremble, I notice it a lot when I read magazines because the pages shake) -Increasingly worse heart palpitations that have been recorded by my cardiologist -Sensation when I'm laying down as if I am rocking on a boat -Body rocking (my body actually rocks back and forth involuntarily on occasion) -CONSTANT FATIGUE ALL DAY, EVERY DAY -Inability to fall asleep at night -Body weakness/heaviness -Irregular menstural cycle -Sudden muscle jerks/movements -Loss of balance/tip over while walking/walk into things -Vibration sensation in my feet -Feeling as if I can't take a satisfying, deep breath -Loss of energy -The chills -Pressure and sometimes pain in my knees, hips -Slowed processing of information -Inability to keep concentration -Headaches/ sharp pains in the back of my head that last for a few seconds but are persistent --I'm sure many more that I am forgetting I must add that all of this has lead to anxiety and depression which has only made matters that much worse. I do take .25mg Xanax when I feel very sick and although I become relaxed, my symptoms do not decrease. I never have the desire to do anything anymore and I lay around all day because of how sick I feel. I just started 100mg 2 times a day of oral doxycyclene but havn't felt any improvement yet. Has anyone had Herx reaction to anti-biotics and if so, how long did it last? I need help...I feel like I have no where to turn and my parents feel so helpless. I have had every test imaginable from a colonoscopy to MRI's, MRA's, an EGG, EMG, a spinal tap and countless amounts of bloodwork. I have seen an infectious disease doctor, a neurologist, cardiologist, endocrinologist, GI, Opthamologist, Neuro-opthamologist, movement disorder specialist, and the list goes on. Doctor after doctor has told me that they can't classify my condition or that this is some kind of strange anxiety. I truely feel that I know my body and it's not. If ANYONE can please comment on my story, relay some helpful advice or let me know if you've had any of my symptoms PLEASE DO, I will appreciate it more than you know. The past 10 months have turned my life into a living nightmare and I am losing hope of feeling like my normal, happy self with each day that passes. The only thing that brings me comfort is reading symptoms and stories of other people and feeling as if I'm not alone. I think that it's so wonderful that people can join together to help eachother and offer advice and consolation and hope that this will turn out positive for me Thank you for your time and please feel free to contact me! Post edited by: michele611, at: 09/21/2007 09:15 This list of symptoms could be mine. I no longer have all of the symptoms all the time. I'm 63 - I can learn to live with this. Wonder how this poor girl is doing now - 6 years later ...