Been having scary and tiring heart and blood pressure changes.
I'll be back when I feel better.
Wednesday, June 26, 2013
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.
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.
Thursday, June 13, 2013
6/13/13
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 !
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 !
Saturday, June 1, 2013
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.
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 !
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 !
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