Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

All please read!

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
acharms
Regular Member
Joined : Apr 2012
Posts : 128
Posted 9/13/2013 9:40 AM (GMT -7)
I haven't posted in a while as I feel quite discouraged. I keep reading about people looking for help and that are very sick. My heart goes out to everyone, including people who are relapsing and others having difficulty with treatments.

I have tried to get involved in the politics surrounding lyme disease diagnosis and treatment. Of course older members have found that it is a issue of huge egos and incredible amounts of money and political lobbyists.

I have been in contact with some of the important politicians  involved in new legislation to help individuals with lyme treatment guidelines, etc. I have posted about this in the past. Senator Blumenthal has been working hard on this issue for at least 10 years.

The Senator just wrote to me, that the two bills H.R. 610 and 611 were defeated in Congress last year. They again are on the ballot and he didn't express much hope that they will pass this year. This legislation is the ONLY way that things will change. It would be the beginning of people getting correct diagnoses, treatment by lyme literate physicians and research will begin to find more effective treatment.

In October there is an IDSA conference in San Francisco and an ILADS conference in San Diego we need people to picket both of these so there is more lyme awareness in the U.S.

There is a petition against the IDSA guidelines that limit our treatment to 2-3 weeks of low dose oral antibiotics.

If you are from PA. it is very important to contact Senator Pitts as he is the Chairman of the Committee discussing these bills. There has been huge denial of lyme disease even existing in the state. I have listened to discussions in Congress and the ignorance from which many speak is unbelievable. I force myself to listen but I can barely stand it.

It is difficult to realize that these are people making incredibly important decisions for the American people. At times I wish that I kept my head in the sand.

Anyway sorry to get off topic, if you live in one of the states that has a Congressmen or a Senator on the committee please contact them. Some will not read e-mail if you don't live in there state. This is the case in Pa.

I'll give the names states in another  post.

Thank you for your attention to this matter.

Anna

profile picture
Traveler
Elite Member
Joined : May 2007
Posts : 36318
Posted 9/13/2013 1:56 PM (GMT -7)
Thank you Anna! I am one who choose to help on the front lines rather than going at it against legislation, but something we could all do is write letters!!

Is there any way you could put together a type of form letter that others here who may not be able to think clearly could just copy and paste and send out to different elected officials? I have to admit that I haven't been following any of the legislation issues so I can't put together an intelligent sounding letter, but I would be happy to help spread the info!!

I think in order to comply with the rules here, we would have to do most of this off-list (off the forum) but we could definitely let people know about it here on the forum. We can use my email to send out the letters from for anyone who asks here on this thread (or another). What do you think? Can we get something started? You can feel free to email me about this if you choose.
profile picture
Cat53
Veteran Member
Joined : Jul 2012
Posts : 672
Posted 9/13/2013 5:36 PM (GMT -7)
Anna, why would people picket the ILADS conference?
profile picture
acharms
Regular Member
Joined : Apr 2012
Posts : 128
Posted 9/14/2013 4:57 AM (GMT -7)
Sorry to be confusing I get so upset.

Cat53 I know that people wanted to show support for the ILADS organization by having lyme advocates at the conference to gain more awareness that this is becoming a widespread issue.

Anna

profile picture
acharms
Regular Member
Joined : Apr 2012
Posts : 128
Posted 9/14/2013 5:26 AM (GMT -7)
Dear Traveler,

First off I hope you are feeling well. Thank you for your response. I will begin to work on a letter.

I will also see about the voting record from last year.

I think one of the problems is that some of the states represented have very few cases of lyme disease and still are in denial. This probably includes: Texas, Tenn. Kentucky, Ill. Others like Michigan, Fl., and Va. are probably more supportive. Then there are states: N.J. and Ca. that have at least recognized lyme disease as existing.

I think overall that there  is a total lack of understanding the dangers involved with lyme and other tic borne diseases. I live about 45 miles from lyme , Ct. and over the 5 years I searched for answers no doctor suggested lyme disease. I learned about it from others in the community. Even with the rash and 10 days of Doxy no doctor would believe I could still have lyme!

I have been wondering how the lyme patient,  in I believe Tenn. is doing? I know you were trying to get help for her. I love your idea about forming support groups to help others.

Thanks again Traveler!

Anna

 

profile picture
Deejavu
Veteran Member
Joined : Aug 2005
Posts : 4667
Posted 9/14/2013 6:08 AM (GMT -7)
Hi Anna,

I admire your passion yet I don't agree with everything you wrote.  It was an ID Doctor that sent my blood to IgeneX (I had never heard of this lab before) after my blood was being sent to local labs for over 5 years with negative results.   So I thank him for that.  Not all ID doctors are the same as per my own experience.

Also, there is no proof that antibiotics help a person.  It was alternative medicine that helped me as well as heavy detoxing, changing my diet, eliminating as much stress as I could from my life, making major life changes such as divorcing my 2nd husband who only gave me stress, moving to another state and the list goes on.

From my own experience, lyme treatment is NOT a cookie cutter treatment.  It's about the mind, body and soul.  All must be addressed and taken care of.

The government has no clue on how to treat lyme.  Years ago they came out with a vaccine called Lymerix and guess what?  That vaccine injected lyme bacteria into people who didn't have lyme.  You can bing it. 

And if you are really sick now, you don't need the stress of trying to change law.  I suggest you concentrate on your own health right now.

Believe me, it breaks my heart how many people are sick from lyme and I think the best thing we can do is to reach out and help others.  Especially those who are totally well from lyme and can talk from their own personal experience.

Just my thoughts,

Denise

profile picture
peacesoul
Veteran Member
Joined : Jan 2007
Posts : 2446
Posted 9/14/2013 6:34 AM (GMT -7)
Great reply Denise..... What Denise said (again) :-)
profile picture
Traveler
Elite Member
Joined : May 2007
Posts : 36318
Posted 9/14/2013 8:13 AM (GMT -7)
Here's the problem - it's only those few that are dedicated enough to stick with these issues even when they are feeling better that can do anything for change. Otherwise it's left up to the ones who are coming here. This is why I suggested a letter that can be copied and pasted into an email that can be sent off to any and all gov't officials. It's about as easy as it gets that way, and if there was a truly overwhelming response like that all over this country, then at least some of the gov't officials would sit up and take notice...finally.

Do I promote the use of abx only to treat these diseases? No. But it's not my body and not my choice. This forum is open to those who use both or either abx or herbs/natural therapies.

There are documented cases of people healing using abx alone - we cannot deny this, or then it's "fair play" for them to deny that we have achieved healing using only herbs or natural products. That is an argument that will have to take place elsewhere. This forum is for those who are ill, not those only using one type of healing.

Do I support detoxing? Just read some of my posts and you will see that I'm pestering people to detox!

Do I support using herbs and other supportive therapies? Again, read my posts and you will see that I more than support these things.

It's proven what stress does to a healthy person, common sense tells us that those that are ill need to be even more careful. Unfortunately we don't always see the stress in our lives. This is where this community helps - we can call attention to those things for that person.

I could go on - but I really don't think there is a need for that. Please do not discourage people from healing in any way that will work for them, many come here because we are "abx friendly" and discover the 'world of natural healing' here. Why would we jeopardize that?
profile picture
acharms
Regular Member
Joined : Apr 2012
Posts : 128
Posted 9/14/2013 2:14 PM (GMT -7)
I felt it was just a place to start, just for recognition of lyme and other tic-borne illnesses. I don't just rely on antibiotics I do everything I can so I don't die before my son is grown up. I have lost everything in my life, my heart is permanently damaged from lyme and I'll probably never work again that is stressful. I also am raising a son by myself with no support at all, that has been stressful. Oh yeah I lost my house, spent all my retirement savings, I have sold my jewelry and any thing else that was valuable and I am living on SSDI. I had a career as an autistic therapist and as a public school teacher before lyme. Spending the rest of my life worrying about lyme and babesia is stressful. There are no answers because no one has even studied it for 40 years.

I will not ever bring it up again on this forum, people always ask why don't people with lyme disease ever speak up and I keep saying I don't know why? To me this is the saddest thing ever.

Anna

profile picture
Traveler
Elite Member
Joined : May 2007
Posts : 36318
Posted 9/14/2013 2:43 PM (GMT -7)
Please don't let a few people take this from you. You have a great idea, and a way that many can feel like they are doing something. That would allow not only you to feel like you have accomplished something potential great towards the recognition of Lyme, but you could help many others to feel like they were able to help as well.

I do understand when someone shoots down an idea, it's hard to stay very excited about it, but I'm still "all in" with you, and I'm sure others would agree as well!!
profile picture
Deejavu
Veteran Member
Joined : Aug 2005
Posts : 4667
Posted 9/14/2013 3:58 PM (GMT -7)
Hi Anna,

I am truly sorry that I came on so strong, if you knew me in real life I am a mush.  Behind my monitor I read people's stories and tears flow down my cheeks because I can never forget the pain I went through.  I also lost most everything from this disease but you lost more because you have a son, I never had children (though I would have liked to with my first husband who passed away).   I thought I would retire from the Fortune 500 company I worked for before I became sick but that didn't happen because of lyme.   I could probably write a novella about my life and all the hardships I went through...  

Believe it or not, I kept e-mailing politicians where I lived and tried to make appointments with them.  Yes, I wanted lyme to be out of the closet just like you so I'm with you on that.  I think I misunderstood you and I'm honest enough to admit that.

I have talked to congressmen/congresswomen, senators, etc. but they never did anything except give me a polite response.  I don't talk about that because I felt I failed.  Yet I do as much as I can behind the scenes (I don't tell people), I just do it.  I sign all different types of petitions, still e-mail senators in the new state I live in, fight against GMO foods, and so much more.  

As Traveler said, please don't give up, okay?

Denise

profile picture
Deejavu
Veteran Member
Joined : Aug 2005
Posts : 4667
Posted 9/14/2013 4:12 PM (GMT -7)

Hi again Anna,

I thought the links below may interest you:

If you get Turner Classic Movies, about 3 times a year they show a film based on a true story called Dr. Ehrlichs Magic Bullet.

Dr. Ehrlich's Magic Bullet is a 1940 biographical film directed by William Dieterle and starring Edward G. Robinson, based on the true story of the German doctor and scientist Dr. Paul Ehrlich. The film was released by Warner Bros., with some controversy considering the subject of syphilis in a major studio release. It was nominated for an Academy Award for its original screenplay (by Norman Burnstine, Heinz Herald and John Huston), but lost to The Great McGinty.

http://www.amazon.com/Doctor-Ehrlichs-Bullet-Edward-Robinson/dp/B0026ZQJ6Q

This is actually how they came up with the coinfection Ehrlichiosis since syphilis spirochetes and lyme spirochetes are cousins.

Then this:  taken from http://en.wikipedia.org/wiki/Lyme_disease:

The evolutionary history of Borrelia burgdorferi genetics has been the subject of recent studies. One study has found that prior to the reforestation that accompanied post colonial farm abandonment in New England and the wholesale migration into the mid-west that occurred during the early 19th century, Lyme disease was present for thousands of years in America and had spread along with its tick hosts from the Northeast to the Midwest.[184]

John Josselyn, who visited New England in 1638 and again from 1663–1670, wrote "there be infinite numbers of tikes hanging upon the bushes in summer time that will cleave to man's garments and creep into his breeches eating themselves in a short time into the very flesh of a man. I have seen the stockins of those that have gone through the woods covered with them."[185]

This is also confirmed by the writings of Peter Kalm, a Swedish botanist who was sent to America by Linnaeus, and who found the forests of New York "abound" with ticks when he visited in 1749. When Kalm's journey was retraced 100 years later, the forests were gone and the Lyme bacterium had probably become isolated to a few pockets along the northeast coast, Wisconsin, and Minnesota.[186]

Perhaps the first detailed description of what is now known as Lyme disease appeared in the writings of Reverend Dr John Walker after a visit to the Island of Jura (Deer Island) off the west coast of Scotland in 1764.[187] He gives a good description both of the symptoms of Lyme disease (with "exquisite pain [in] the interior parts of the limbs") and of the tick vector itself, which he describes as a "worm" with a body which is "of a reddish colour and of a compressed shape with a row of feet on each side" that "penetrates the skin". Many people from this area of Great Britain immigrated to North America between 1717 and the end of the 18th century.

The examination of preserved museum specimens has found Borrelia DNA in an infected Ixodes ricinus tick from Germany that dates back to 1884, and from an infected mouse from Cape Cod that died in 1894.[186] The 2010 autopsy of Ötzi the Iceman, a 5,300-year-old mummy, revealed the presence of the DNA sequence of Borrelia burgdorferi making him the earliest known human with Lyme disease.[188]

The early European studies of what is now known as Lyme disease described its skin manifestations. The first study dates to 1883 in Breslau, Germany (now Wrocław, Poland), where physician Alfred Buchwald described a man who had suffered for 16 years with a degenerative skin disorder now known as acrodermatitis chronica atrophicans.[189]

✚ New Topic ✚ Reply

More On Lyme Disease

CBD And Pain Management: Is This Supplement Right For You?

CBD And Pain Management: Is This Supplement Right For You?

10 Steps For Healing Well With Chronic Illness

10 Steps For Healing Well With Chronic Illness



HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
FacebookFacebook TwitterTwitter InstagramInstagram PinterestPinterest LinkedInLinkedIn
© 1997-2021 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.