Lyme Letters Project

Lettter Writing Campaign for Lyme

2011-01-19T11:01:00.000-05:00

There is a new blog devoted to a letter writing campaign. They give the form of the letters and whom you can send them to.

Find the complete instructions here: http://januarylettersforlyme.blogspot.com/

You don't have to have Lyme in order to be a part of this letter writing campaign.

Please participate if you or anyone you know has been affected by Lyme disease or any of it's co-infections.

THANK YOU!

January 17, 2011

2011-01-17T20:15:00.000-05:00

Dear President Obama:

I would like to share with you how Lyme has affected my life because this disease is more debilitating that most people realize.

For starters, I not only have Lyme disease, but several co-infections including: mycoplasma, Ehrlichiosis, Bartonella, and Babesia. These infections have caused a myriad of medical problems, including but not limited to: persistent pneumonia, liver problems, kidney problems, lymphatic system problems, circulation problems, severe osteoarthritis, tremors, eye problems, thyroid problems, systemic fungal and parasitic infections,and more.

It's been very difficult to get proper treatment in PA, so I see a doctor in Seattle, WA. This is very costly, but I have no choice if I want to restore my health.

Some of the things that I have to do in order to get my health back include: dry body brushing to stimulate my lymphatic system, liver poultices 2X's a day, epsom salt baths, take a lot of supplements and medications daily, vitamin c and magnesium drips, and more.

I am constantly fatigued and in lots of physical pain. But it has also affected my mental health, which I am also getting treatment for.

When are we going to hold the IDSA (Infectious Diseases Society of America) accountable for their opinionated, not factual, diagnosis and treatment guidelines?

Intending Change,
Regina Magee

December 31, 2010

2010-12-31T13:47:00.000-05:00

Dear President Obama:

I would like to share a devasting story with you regarding the effects of having Lyme Disease.

For starters, there is a big misconception that Lyme Disease is not that serious. But, in fact, people are dying every day from Lyme Disease and it's related co-infections. This is because of the inadequate diagnosis and treatment of Lyme Disease. I firmly believe that this is due to the political controversy surrounding Lyme Disease caused by the IDSA (Infectious Diseases Society of America) and the CDC. They continue to falsely publicize these falsities.

Recently, I was speaking with a teacher friend of mine who works in the Elkton, MD area. One of the school students, in the 3rd grade, recently died from Lyme Disease. He was diagnosed with Lyme Disease and given inadequate treatment. The Lyme Disease attacked his heart and he passed away. Think of the poor mother and father that have outlived their child. This is unnatural and devasting to parents.

When are we going to wake up and look at the scientific evidence? When are we going to stop listening to the rhetoric perpetuated by the IDSA?

I beg of you to get involved in this Lyme Disease Controversy. We can no longer afford to take the word of the IDSA, whose members have conflicts of interest in this matter.

Intending Change,
Regina Magee

October 7, 2010

2010-10-07T19:02:00.002-04:00

Dear President Obama:

Today, instead of talking about the pitfalls and controversies surrounding Lyme disease diagnosis and treatment, I would like to pose a few questions to you.

For starters, I am aware that CHANGE can be a difficult thing for people to accept and it often happens slowly, so I am not so naïve to think that this Lyme controversy is going to go away overnight. However, having said that, I am also aware that much of this Lyme controversy has been created by some powerful doctors from the IDSA (Infectious Diseases Society of America) who have known conflicts of interest and the incentive to keep disseminating false information about Lyme disease. Almost all of the Board of Directors are getting paid by one or more special interests groups to do this, for various reasons. The primary reason is to appease the insurance companies so that it gives the insurance companies a reason not to pay claims related to Lyme disease. I would like to also point out that many of these doctors, before they took on this criminal cause of theirs, were proponents of Chronic Lyme Disease and wrote numerous articles in reputable medical journals to that fact. Somehow, they have conveniently forgotten all that and today their articles tend to be opinion pieces rather than good scientific data.

Since there is so much public information out there about the IDSA and their shortcomings and there are numerous Lyme advocacy groups trying to create change, what are we doing wrong? Why have we not created the type of change that is so desperately needed?

I sincerely would like to know how we can get the IDSA to be truthful about Chronic Lyme Disease? How can we get the Lyme disease diagnosis and treatment guidelines changed to be more accurate? How can we get the CDC to adopt unbiased Lyme disease diagnosis and treatment guidelines? How can we get the insurance companies to pay for the treatment that patients truly need? How can we get better testing? And the list goes on.

Please help!

Intending Change,

Regina Magee

October 5, 2010

2010-10-05T19:59:00.002-04:00

Dear President Obama:

I have not written a letter in a number of days because I have had a setback in my health. This is not uncommon with Lyme disease.

What I would like to talk about are the systemic breakdowns that are creating problems for not just Lyme patients, but for many others also.

As a person who has a strong healthcare and business process engineering background, I strongly believe in a theory called “Systems Thinking.” In essence, in order to fix a problem, the whole system needs to be looked at because if a change/fix is made to just one part of the system, no matter how small, it will have an effect on the entire system. Similarly, if one part of the system begins to fail, it can make the whole system fail. That’s what I believe is going on here with Lyme diagnosis and treatment.

We have Lyme advocacy groups that are trying to change legislation to protect doctors who treat Lyme patients for longer than 4 weeks; there are groups that are trying to pass legislation regarding Lyme education; and then there are groups that are trying to pass legislation to ensure that insurance companies pay for Chronic Lyme Disease treatment.

While all of these efforts are to be commended, there are a couple of problems with this: 1) what little legislation has passed has only been done at the local or state level, 2) the groups trying to pass these legislations have had to make so many concessions that these bills are very watered down, and 3) it takes years for these bills to pass and time is of the essence because we have a Lyme disease epidemic that is growing in leaps and bounds.

The problem with this “weak” legislation is not the fault of those Lyme advocates who work tirelessly for the betterment of Lyme patients. I don’t want to blame anyone, but how are we supposed to get any justice when the special interest groups (such as the insurance companies) have so much power in our government?

Intending Change,

Regina Magee

September 29, 2010

2010-09-30T01:23:00.000-04:00

Dear President Obama:

I just got home from seeing a screening of the award winning documentary about Lyme disease called “Under Our Skin.” This is a very riveting film that is very informative about Lyme disease, what it is, how it affects patients, and why there is so much political controversy surrounding Lyme disease.

I implore you to get a copy of this film and watch it. The film is 2 years old and doesn’t tell everything there is to know about Lyme, but it sure does give a great foundation about Lyme disease information. It’s a definite must see.

I would be interested in knowing if you watch the film and what your thoughts are on the film.

Intending Change,
Regina Magee

September 28, 2010

2010-09-28T21:44:00.002-04:00

Dear President Obama:

Today I would like to share with you my thoughts on how the controversies related to Lyme have affected my life and the lives of many other Lyme patients. I can speak for other Lyme patients because I belong to some online Lyme groups and I hear these common themes.

Tomorrow is a day of hope. There is going to be a screening of the award winning documentary on Lyme disease called “Under Our Skin” at a local high school in my area. This is a very rare and precious gift to those who live in my area. I thought this would be the perfect opportunity for my friends to see this film and learn about Lyme and understand better what I have been going through over the past several years. However, none of my friends want to go see the film. I was really disappointed by that.

This past Sunday, I was at a birthday party for one of my friend’s children. I asked this friend about going to see the film. Their response was that I am always “beating a dead drum” about Lyme and that while they care that I get better, they don’t care about Lyme because it doesn’t affect them. This was very hurtful to me. But this is also a story that I hear from other Lyme patients over and over again.

To me, this is such a close minded response. But it is the same type of response that the general public is having to Lyme disease in general. Sometimes it feels that I would have been better off getting cancer because people would then have more compassion for me.

As human beings with Chronic Lyme disease, we just want to be understood and respected like any other person. We are often treated like we are crazy and making up symptoms even though there is gads of research showing otherwise that chronic Lyme disease does exist.

There are so many groups and people advocating for Lyme disease, yet for some reason, it feels like the general public, the medical community, and the insurance companies refuse to acknowledge the very existence of this disease.

We are not crazy, we will be heard, and we will get justice!

Intending Change,

Regina Magee

September 24, 2010

2010-09-24T21:11:00.000-04:00

Dear President Obama:

After sharing those CALDA survey results, I really feel the need to share an analogy with you.

Back in the early 1980’s, we started learning about HIV/AIDS. If you remember, when we first started hearing about this disease, it was called the “gay man’s disease.” As we all know today, that couldn’t be further from the truth.

There were many other misnomers about HIV/AIDS in the early days. There was a lot of controversy over how someone could contract HIV – some said it was through hugging, kissing, touching someone with HIV/AIDS, drinking from the same cup as someone infected, and the list goes on. These false beliefs were perpetuated for many years and many people who suffered from HIV and AIDS were ostracized by those around them. That’s not to say that they are not looked down upon today, but back when all this misinformation was being touted by the medical community, the HIV/AIDS community suffered a major injustice.

Well, that is what is happening today to Lyme patients. Because of the incredulous IDSA diagnosis and treatment guidelines for Lyme disease, many Lyme patients are suffering greatly. And that effect is compounded greatly because the CDC continues to support those guidelines.

Lyme patients do not always look sick, so people do not always realize just how sick they really are. Since many of the symptoms can be debilitating, they suffer greatly. And they suffer because the IDSA has a loud voice, the CDC won’t do what is right and look at the real evidence, and the insurance companies hide behind the IDSA guidelines and use it as ammunition to NOT pay claims for Lyme disease.

This is a crime! What has happened to humanity? When are we going to make big businesses and special interests held accountable for their actions?

Again, I ask, “When are we going to have a government that is for the people and by the people?”

Intending Change,

Regina Magee

September 22, 2010

2010-09-22T22:43:00.000-04:00

Dear President Obama:

In this letter, I am going to continue with more of the CALDA Lyme survey results because I think that it is important to share this information with you.

Q: Have you had to cut down or limit your usual activities, including housework or school related activities as a result of Lyme disease?

Results: No (4.9%), Yes (88.2%), Other (6.9%) – 3,826 respondents

Q: If you have had to cut back on school or work related activities, describe the cut back:

Results: N/A (8.9%), I went from full time to part time work (8.9%), I went from full time to part time school (2.0%), I was not able to work (41.7%), I was not able to go to school (8.9%), Other (29.5%) – 3,780 respondents

Q: If you have ever been unable to work or to go to school because of Lyme disease, for how long were you unable to work or go to school?

Results: < 3 months (11.7%), 3-11 months (11.2%), 1 year (6.3%), 2-3 years (15.1%), 3-5 years (9.0%), > 5 years (23.1%), N/A (23.7%) – 3,754 respondents

There are other questions in this survey, but I feel that these questions are the most pertinent. The full survey results can be downloaded as a pdf document at the following link: http://www.lymedisease.org/news/lymepolicywonk/198.html.

Those who contract Lyme disease do not do this intentionally, yet they are severely punished by our current system. It can be years before diagnosis, which can cause further debilitation. Then after diagnosis, most insurance companies do not want to pay for services because of the ridiculous IDSA treatment guidelines. And on top of all that, if someone complains that their symptoms persist after 4 weeks of treatment, they are accused of being mentally ill.

These survey results show that patients are caught between a rock and a hard place. They are being victimized by a broken system which consists of medical societies with conflicts of interests, insurance companies that strong-arm consumers and a lack of a voice for patients because they are overpowered by special interest groups.

Intending Change,

Regina Magee

September 20, 2010

2010-09-20T23:05:00.001-04:00

Dear President Obama:

As I shared with you in my last letter, I would like to share more of the CALDA survey results. This survey was presented at the IDSA antitrust hearings.

Q: What is the greatest distance you have traveled for treatment of your Lyme disease?

Results: <50 miles (23.7%), 51-100 miles (19.2%), 101-500 (31.7%), >500 miles (19.2%), other (6.2%) – 3,910 respondents

Q: Have you ever traveled out of state for diagnosis or treatment of Lyme disease?

Results: Yes (52.5%), No (47.5%) – 3,923 respondents

Q: If you were treated under the IDSA guidelines protocol initially (less than 30 antibiotic therapy), did this restore your health? (Answer no if you required further treatment of subsequently relapsed.)

Results: N/A (33.2%), Yes (1.7%), No (58.1%), Other (7.0%) – 3,794 respondents

Q: Would you ever consider seeing a physician who followed IDSA guidelines for treating Lyme disease?

Results: Yes (8.5%), No (80.4%), Other (11.1%) – 3,855 respondents

Q: Drug, doctor and hospital costs may or may not be partially or fully paid by your insurance. How much of a financial problem are your drug and medical bills after receiving all insurance payments?

Results: Limited problem: I am able to pay the bills without much problem (18.1%), Moderate problem: Paying the bills takes away some money I need for other activities (40.9%), Great problem: I can’t purchase all of the medications or medical care that I need (41.0%) – 3,803 respondents

I am going to continue with more of this survey tomorrow. I am sharing the results of this survey because I feel strongly that while this is a limited survey with approximately 4,000 respondents, it is a glaring example of what the larger Lyme population is experiencing on a daily basis.

Intending Change,

Regina Magee

September 17, 2010

2010-09-17T21:25:00.003-04:00

Dear President Obama:

To give you a better idea of what Lyme patients are up against in terms of diagnosis and treatment, I would like to share with you some of the results of a survey that was done in July 2009 that was presented at the IDSA antitrust hearings. The survey was conducted by CALDA (California Lyme Disease Association). Respondents were not just from California.

Q: Do you or your child have chronic (6 months or more) subjective symptoms after receiving at least 21 days of treatment [for] Lyme disease?

Results: Yes (88.5%), No (7.4%), I don’t know (4.2%) – 4,116 respondents

Q: How long have you had Lyme disease?

Results: <1 year (7.0%), 2-5 yrs(29.1%), 6-10 yrs(21.1%), >10 yrs(42.8%) – 4,044 respondents

Q: How long was it from the onset of your symptoms until you were diagnosed with Lyme disease?

Results: w/I 4 months (16.0%), 5-11 mos (11.7%), 1-2 yrs (17.1%), 25 mos – 6 yrs (20%), > 6 yrs (35.6%) – 3,956 respondents

Q: How many physicians did you see between the onset of symptoms and Lyme diagnosis?

Results: 1 (9.1%), 2-3 (18.8%), 4-6 (23.4%), 7-9 (14.1%), 10 or more (34.9%) – 3,971 respondents

Q: How were you diagnosed?

Results: I was CDC positive by two-tiered testing (ELISA or IFA followed by Western Blot) (13.4%), I was CDC positive by Western Blot (19.6%), I was clinically diagnosed w/other supporting lab tests (41.8%), I was clinically diagnosed without other supporting lab tests (7.8%), I don’t know (1.4%), other (16.0%) – 3,971 respondents

Q: What type of physician first officially diagnosed you with Lyme disease?

Results: Internist (12.5%), Rheumatologist (3.7%), Family Physician (24.3%), Infectious Disease Specialist (11.6%), LLMD–Lyme Literate MD (42.9%), Other (25.0%) – 3,972 respondents

Q: How difficult was it to find a knowledgeable physician to treat your Lyme disease?

Results: Easy (4.2%), No more difficult than finding any other physician (5.5%), Difficult (32.8%), Extremely Difficult (57.5%) – 3,929 respondents

I find these results disturbing. And not only that, I believe that these results are just a microcosm of a bigger problem going on in this country regarding our health care system, problems of ethics within our medical associations, and the power of the special interests. I am going to share more of this survey so that you can see how disturbing the issues are surrounding Lyme disease in this country.

Intending Change,

Regina Magee

September 16, 2010

2010-09-16T23:05:00.001-04:00

Dear President Obama:

I have missed two days of writing to you again because of my Lyme. I am having some die-off reactions to a new medication called Biltricide. It is an anti-parasitic medication. Some of the co-infections that I have are parasitic infections. This medicine is so strong that within 5 hours of the first dose, I am experiencing large rashes all over my body. Some are large welts, some are prickly heat type looking rashes, and some look similar to hives. They are all very red, very hot, and very itchy. It is also causing me a fever and general malaise.

Having said that I want to share some general thoughts I have been having about insurance companies in general. While this definitely applies to health care insurance companies, it seems to also apply to other types of insurance companies such as car insurance, homeowner’s insurance, etc…

Over the years, I have had numerous experiences with each of these different types of insurance companies and the common theme that I keep experiencing is that they get to make all the rules (to their benefit and our detriment). I feel like a tiny little ant being squashed by the foot of an insurance company on almost a daily basis.

There is such a double standard with insurance companies. If I were to commit insurance fraud, the insurance companies would have the full cooperation of the government to prosecute me to the fullest extent of the law. However, when insurance companies do wrong by their clients (i.e., subscribers, insured), we have no power whatsoever to do anything about it. The insurance companies have the law to hide behind when they are being dishonest. Sure, there are insurance commissions and such, but I have dealt with them on numerous occasions and it has never worked out in my favor. In fact, I was told by them and several lawyers that the insurance companies generally have a lot of protection under our current laws. This disgusts me!

Do the citizens of this country need to ban together and get our own lobbyists so that we can get some rights back in this country? I thought that our forefathers founded this country on the principle of “for the people and by the people?” Since when has it become, “for the big businesses and by the lobbyists?”

Can someone please tell me how we little ants can stand up to these big ogres?

Intending Change,

Regina Magee

September 13, 2010

2010-09-13T20:59:00.002-04:00

Dear President Obama,

The last time I wrote to you was on September 8, 2010 and I had intended to write to you the next day about my concerns regarding health insurance companies. However, I did not write the next day or the following day.

The reason that I did not write is because of my Lyme and the related co-infections. This disease can be very unpredictable. I expect to be as healthy as I possibly can be one day, but I am not there yet. I am still on my journey to health. Some days are better than others.

On Wednesday of last week, I had to give myself an injection of a new medication and I am now having Herxheimer reactions (or herxing). Herxing makes you feel very sick because there are “dead” bacteria in your system that has not been flushed out yet.

I am still not feeling very well, so I am not going to write about the insurance companies right now. What I am going to do is tell you what I’ve been experiencing since Thursday of last week.

- Extreme fatigue

- Left leg tremors

- Right hand tremors

- Pain in my eyes

- Chest pains

- Joint pain

- Sleep disturbances

- Severe cognitive problems – I was driving to the doctors and forgot where I was going and had to drive around until I could remember where I was going – that happened on the way there and coming home. I couldn’t do some simple math.

Intending Change,

Regina Magee

September 8, 2010

2010-09-08T21:53:00.000-04:00

Dear President Obama:

Yesterday I wrote a little about what it is like living day to day with Lyme disease and its related co-infections. Today I would like to write about how the health insurance companies are making this matter worse.

This problem does not just affect Lyme patients but is pandemic across all medical conditions.

Nearly 20 years ago, I worked for 4 years at the corporate headquarters of a major health care system in Philadelphia, PA. Several years later, I worked for a number of years at a benefits consulting company. And many years later, I did a consulting job at the largest health care provider in Philadelphia regarding their claims processes. Having worked at a number of jobs in the healthcare field that has given me a greater understanding into how health insurance companies work.

Having this knowledge, I contend that it IS A MAJOR CONFLICT OF INTEREST for health insurance companies to be the ones who get to decide what services they will cover or not. Since many of these companies are publicly owned, they have shareholders that they are accountable to. This translates into creating a bigger bottom line. With the pressure of needing to create a bigger bottom line, the subscribers and the providers of the health insurance companies suffer because they will do anything in their power to NOT pay a claim.

What doesn’t make sense to me is that these same insurance companies won’t pay legitimate claims and yet they have plenty of money to pay lobbyists to get them out of paying for services. Isn’t that irresponsible spending on the part of the health insurance companies? And people wonder why health insurance premiums are sky rocketing.

And just as sad as patients getting the short of this health insurance stick is that the doctors, hospitals, and other providers are also getting the short end of the stick.

I don’t know exactly how it should work in detail, but I feel that in order to avoid this CONFLICT OF INTEREST, there should be an unbiased third party that determines what services a health insurance company is expected to pay for.

Tomorrow I would like to delve more into some concerns regarding health insurance companies.

Intending Change,

Regina Magee

September 7, 2010

2010-09-07T21:01:00.000-04:00

September 7, 2010

Dear Obama:

Yesterday I wrote some about the antitrust investigation into the IDSA. Today I would like to talk some about how the actions of the IDSA and their guidelines affect the day to day lives of those with Lyme disease.

One of the frustrating things about Lyme disease is that it is not like other diseases in that once you are infected, you are infected. With Lyme disease, you can be re-infected with each subsequent tick bite. In addition, if that tick carries other co-infections that will compound the severity of the patient’s disease.

As a person who subscribes to many Lyme disease forums on the internet, the common theme is that everyone is so tired! They are tired of the controversy about getting a proper diagnosis; they are tired of friends and family not understanding their plight with this disease because of the misinformation that is spread by most of the medical community; they are tired of fighting with their insurance companies to pay for their treatments (which are usually long term and very expensive); they are tired of the financial hell hole that they have found themselves in; they are tired of feeling like there is nowhere to get help; and last, but certainly not least; they are tired of being sick and tired.

At the height of my disease, I spent almost 24 hours a day in bed. This can be very common for most Lyme patients. As my naturopath explained to me, getting healthy from this disease is like peeling back the layers of an onion. Not only do you have to heal from the Lyme and the various co-infections that you may have, but you also have to heal from the damage that the Lyme has caused to your body.

Many patients suffer from detoxification problems, eye problems such as glaucoma, heart problems, severe arthritis, neurological problems, thyroid and hormonal problems, vitamin and mineral deficiencies, etc… So as one thing is attended to, other illnesses or problems will reveal themselves.

And most of the medical treatment for this care is not covered by health insurance companies because they go by the guidelines on the CDC website. The CDC uses the IDSA guidelines that have been investigated by the Attorney General of Connecticut. What a convenient excuse for insurance companies!

Intending Change,

Regina Magee

September 3, 2010

2010-09-03T23:00:00.002-04:00

Dear President Obama:

Yesterday I wrote to you a bit about why it is so hard to get a proper diagnosis for Lyme disease and its related co-infections. Today I would like to delve further into the antitrust investigation against the IDSA.

There is an excellent article related to this antitrust investigation and how it affects patient care entitled, “The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about the development of clinical practice guidelines” and it can be found at: http://www.peh-med.com/content/5/1/9.

In summary, the authors, Lorraine Johnson and Raphael B Stricker, contend that: “Flawed clinical practice guidelines may compromise patient care. Commercial conflicts of interest on panels that write treatment guidelines are particularly problematic, because panelists may have conflicting agendas that influence guideline recommendations. Historically, there has been no legal remedy for conflicts of interest on guidelines panels. However, in May 2008, the Attorney General of Connecticut concluded a ground-breaking antitrust investigation into the development of Lyme disease treatment guidelines by one of the largest medical societies in the United States, the Infectious Diseases Society of America (IDSA). Although the investigation found significant flaws in the IDSA guidelines development process, the subsequent review of the guidelines mandated by the settlement was compromised by a lack of impartiality at various stages of the IDSA review process…..”

In other words, the IDSA went through the motions of appearing to review the guidelines, but in the end, they made no changes. Their ignorance in this matter is deeply affecting the physical, emotional, spiritual, and financial health of many Americans suffering from Lyme disease.

Lyme disease is the most common vector-borne infectious disease in the U.S. Additionally, in 2008, there were over 20,000 cases reported to the CDC and the CDC estimates that the actual numbers are actually tenfold that number.

Tomorrow, I will expand on some of the burdens that patients with Lyme disease have to bear because of the injustices surrounding this horrible disease.

Intending change,

Regina Magee

September 2, 2010

2010-09-02T23:15:00.002-04:00

Dear President Obama:

Yesterday I wrote to you about problems with getting a proper diagnosis of Lyme disease and other tick bite related co-infections. Today I would like to expand on this devastating issue surrounding the ability of Lyme patients being able to get a proper diagnosis.

While there are over 20 available tests for Lyme disease, there are 3 commonly used tests for Lyme disease: ELISA, Western Blot, and PCR. There are 2 significant problems with the ELISA and Western Blot tests: 1) Both of these tests are blood serum tests and the Lyme spirochete does not like oxygen, so it often “hides” in other areas of the body, such as connective tissue and organs, so it will not show up in a blood test, and 2) These tests look for IgG and IgM antibodies and doctors assume that if you test positive on the IgM, that you once had Lyme, but no longer have it. They have perpetuated the idea that you need to have a positive IgG in order to have a current infection, but that is not true with Lyme disease. A positive IgM also means that the patient currently has Lyme disease.

In an article on the canlyme website the following information was given about the Western Blot test, “In 1994, the Association of State and Territorial Public Health Laboratory Directors, under a CDC grant, decided that there should be consistency between labs reporting Lyme disease Western Blots, and that a specific reporting criteria should be established. The consensus committee, chaired by Dr. Michael Osterholm, Ph.D, MN, set nationwide standards for Western Blot reporting. This sounds good, but one could argue that they made a bad situation worse.” Just for the record, Dr. Osterholm is a fellow member of the IDSA.

While the IDSA should be looking out for the betterment of patients, they are instead, looking out for the betterment of their pocketbooks. It is widely known that in October of 2007, the Connecticut Attorney General launched an antitrust investigation into the development of Lyme disease treatment guidelines by the IDSA. It is unconscionable to me that the CDC would seemingly continue to blindly support the IDSA guidelines when the IDSA has clearly not done their due diligence in setting up their guidelines.

Tomorrow I will delve more into the antitrust case against the IDSA.

Intending Change,

Regina Magee

September 1, 2010

2010-09-02T00:27:00.002-04:00

Dear President Obama,

Yesterday I wrote to you briefly about my history with Lyme disease. Today, I would like to share with you why it is so hard to get a proper diagnosis, not just for Lyme disease but for related co-infections that can also be contracted from tick bites.

First, the biggest problem with getting a proper diagnosis is that there are over 150 symptoms of Lyme disease and many physicians are not educated enough in the area of Lyme disease. Because of this lack of education, many patients are undiagnosed or misdiagnosed for many years before they get a proper diagnosis. The most common misdiagnosis include: Lupus, Multiple Sclerosis, Alzheimer’s, Lou Gehrig’s disease, and Fibromyalgia. The longer a Lyme patient goes untreated, the worse their disease progresses. For the majority of people with untreated Lyme disease, they suffer debilitating illnesses, including death.

The second reason that a proper diagnosis is so hard to get for patients is that there is timing involved as to when you get your test and most of the tests can report anywhere from 30% to 85% false negatives. This is just a general range because it depends on the laboratory used and the specific test involved.

What I do assert is that the root of both of these testing problems can be traced back to the Infectious Diseases Society of America (IDSA) and the CDC. In essence, the IDSA has created treatment guidelines that are based on falsified research information and the CDC continues to support these guidelines, thus, further propagating inferior information out to the medical community.

The main problem as it relates to diagnosing Lyme is that the diagnosis guidelines that are part of the IDSA’s treatment guidelines is that they are based on their own falsified research information and as a result, the diagnosis guidelines are too narrow and not fully accurate. Furthermore, the health insurance companies love this because it gives them ammunition to NOT pay health care claims related to Lyme disease.

Tomorrow I will share more about problems with diagnosing Lyme disease.

Intending Change,

Regina Magee

August 31, 2010

2010-08-31T20:24:00.000-04:00

Dear President Obama:

Yesterday, I shared with you my intention for these letters and a little background on what Lyme disease is, but today I would like to share a little bit about my background.

As a Lyme patient, like so many others, I have been tremendously let down by the medical community and health insurance companies. And all of this is at the hands of some ill-intended physicians from the IDSA who are pushing their own agendas rather than following the Hippocratic Oath that they took as physicians. I will further elaborate on the IDSA in a future letter.

My story began when I was 12 years old. I began getting fevers that would come and go for extended periods of time without explanation. My family physician at the time did many tests but told me that he really wasn’t sure what was wrong with me. It’s understandable at that time that I did not get a diagnosis of Lyme because this was back in 1982 and Lyme was something new on the scene.

Around the same time, I started experiencing joint pain and a lot of soft tissue injuries. These injuries ended up requiring numerous surgeries and the doctors always commented on how much arthritis they saw in my bones.

Then at about the age of 30, I was bit by another tick. This tick bite was very memorable. I took the tick to my physician and showed him my bull’s eye rash and he dismissed me, saying, “Oh, I don’t think that tick can give you Lyme disease.” Trusting in my doctor, I let it go at that.

It wasn’t until I was 37, and I finally had a family doctor that was compassionate enough to not dismiss me and tell me that all of my “complaints” were either stress or in my head. As soon as he said to me, “Were you ever bitten by a tick?” I knew he was onto something.

It took a while to confirm my diagnosis, but here’s a list of just some of the ailments that I have had to deal with since I was 12 years old: extensive soft tissue problems, Epstein-Barr virus, endometriosis, borderline glaucoma, extreme fatigue, parvovirus, degenerative disc disease (entire spine), osteoarthritis throughout my entire body, stomach ulcers, h-pylori, cognitive deficits (severe memory loss, brain fog, hallucinations, and more), and kidney stones. At the age of 40, I have already had 15 surgeries.

This is the plight of most Lyme patients when they are unable to get a quick diagnosis and proper treatment.

Tomorrow, I will discuss why it is so hard to get a proper and prompt diagnosis.

Intending Change,

Regina Magee

August 30, 2010

2010-08-30T13:53:00.005-04:00

Dear President Obama:

I am writing to you with the intention of raising awareness about Lyme disease at the highest levels of government to evoke change. The changes that I want to see forged in our government, medical institutions, and health insurance companies are not limited to Lyme disease, but since I have such an intimate relationship with Lyme disease, I will speak from that perspective.

I will delve into these issues in further detail, but some of the difficulties surrounding Lyme disease include: getting diagnosed, getting treated by a physician knowledgeable about Lyme disease, getting insurance companies to pay for treatment, the controversy over whether Chronic Lyme Disease even exists, the conflicts of interests that exists in the medical community blocking care to patients, and more.

In general, Lyme disease is transmitted through a tick bite, commonly the deer tick. If treated immediately, Lyme disease is a non-issue for the patient. However, with the inadequate testing that is available and the lack of knowledge about Lyme disease among most medical professionals, Lyme disease often goes undetected for many years or is misdiagnosed. The most common misdiagnosis are: Lupus, Lou Gehrig’s Disease, Multiple Sclerosis, Alzheimer’s, and Fibromyalgia.

Lyme disease is a spirochetal bacterial infection, called Borrelia Burgdorferi. When we talk about Lyme disease that is a general term that can include many co-infections that a patient can be infected with, when bitten by a tick. Some of these co-infections include: Bartonella, Babesia, Ehrlichia, Rocky Mounted Spotted Fever, mycoplasma, and more. If a patient has infections other than just Lyme, depending on the type and the number of infections, the severity of their illness can be severely compounded.

A spirochetal bacteria, such as Lyme disease, resembles a corkscrew. Having this shape, Lyme has the ability to “bore” into any organ or system in one’s body. The most commonly affected areas are the bones (causing severe arthritis), neurological system (causing cognitive deficits), and the heart. However, Lyme disease is an equal opportunity offender and will spare no area of one’s body. And this is the simplest form of Lyme disease. There are cystic forms of Lyme disease that are impenetrable by antibiotics (the most common form of treatment).

Tomorrow I will share with you some of my background and history with Lyme.

Intending Change,
Regina Magee