Our gifted teenager writer, Megan Blewitt, 15, and I have shared some private correspondence, and I heard back from her. She agreed it was ok to post this to all of us lymies here. ======================================
Megan's 3-4-06 post to Betty...
"Sorry for not responding in so long. Our teachers loaded us down with homework and tests this week.
But I would love it if you posted my comments on the Lyme network. I would like the research to get as much exposure as possible, for everyone's good.
And a good SUMMARY of the research would be:
I first noticed the similarities between MS and Lyme when I made several maps of the geographic distribution of MS.
I noticed that Connecticut had a large per capita rate of MS diagnoses, and Connecticut has also been infamous for its Lyme Disease rates (as all the members probably know already).
I wanted to verify these visual trends through statistics, so I searched for data for any number of diseases that I thought might be related to MS and Lyme Disease, as well as several others that I did not think were related, to serve as controls.
The controls I chose happened to be stroke and external cause of death such as automobile accident, although you could technically say that these, too, might be related to spirochetes.
When I ran the statistical correlations, I discovered that the links between Lyme, MS, and breast cancer were all high enough to be considered significant.
The links with between MS and the controls was almost negligible, as I had hoped for.
One of the correlations that most stunned me was the correlation between MS and Alzheimer's. This correlation was nearly as high as the correlation between Parkinson's and Alzheimer's, though rarely are MS and Alzheimer's associated with one another in the mainstream media .
All this evidence confirmed and expanded upon the maps that I first produced. I provided a brief biological discussion of why I believe these trends are occuring, though, with help from researchers, doctors, and patients, I hope to expand upon my biological discussion in the future.
I would love to post on the Lyme link. I have been trying to read it regularly, though I am not sure how to post on it. And were the tables and charts I sent you readable? [Megan, yes your tables were readable.]
If any of the other members would like copies and Marjorie has not already sent them, do you think you could distribute them until I find out how to do so myself?
And I did hear about the the attacks against the Lyme doctors. That is a very sad case, because there are already far too few doctors of their type and of their courage in the nation.
Betty, I am very sorry to hear about your family members who have been afflicted with so many illnesses.
I believe the scope of the spirochete attack is much broader than many have estimated, and we need more doctors to investigate these elusive bacteria.
Finally, I live in New Jersey, not far in fact from the Lyme Disease Network of New Jersey. I know many people with Lyme Disease, several of whom have subsequently developed Multiple Sclerosis.
So, although New Jersey may not be the prettiest state of the fifty, we do have a lot of Lyme resources, and I am very grateful for that.
Thank you for all of your support, Megan
from Megan 2-28-06: "Hello,
First, I would like to thank you for sharing your comments and your story. Hearing from people who have been diagnosed with Lyme really adds meaning to the research for me.
Recently my friend woke up and could not see out of one eye. Now she is being tested for Lyme, as well as Lupus and MS. She is only sixteen years old, so it is rather frightening for her,
But I told her to investigate Lyme as a chronic infection and the role of spirochetes. I am hoping she will not have to go through the ordeal you went through.
Needless to say, over time my investiagtion of these diseases has become much more than a simple medical interest.
Second, I apologize for any formatting inconveniences. I have attached a copy of the paper, which includes the maps and tables I produced. If there is a problem, please feel free to e-mail me. I want to make the work as readable as possible.
In response to your question on how I started writing about these diseases,[b]my interest was at first primarily MS. Since the seventh grade I read Neuroscience textbooks and MS articles to try to better understand the mysterious disease.
Once I read that MS was believed to have some unknown environmental trigger, I decided to plot the distribution of the disease across the nation.
I was surprised to see afterwards that the distribution of MS was very similar to that of Lyme Disease.
I investigated the connection a bit further, and [b]sort of stumbled upon this entire world of spirochetes. As I went along, other diseases caught my attention as well.
I am really thrilled to hear your comments and those of the other Lyme members. You are the ones the paper most concerns, so it is important to me that you are able to read the paper and provide feedback.
Hi! I am a chronic lyme patient and member of the lymenet.org message board.
Recently, Margie aka daystar told us about the outstanding paper you wrote on lyme, MS, & breast cancer. She apparently had talked to you and given you input when you were collecting this info.
You sent her your finished paper as an attachment, and I told her how she could copy/paste it to our message board so ALL LYMIES here would have the chance to read your labor of work, detailed statistics beyond belief piece of work!
We are so proud of you, and can tell you were blessed with a gifted mind. I hope you will pursue this type of education using your brain to help us chronic lyme, MS, and breast cancer sufferers!
Megan, I'm 56, and went 34 yrs. being misdiagnosed by 40-50 drs/specialists until June 04 when I had Igenex do a western blot igm/igg on me. I'm still in shock I have chronic lyme and no one took the extra time to follow up on things for me. I'm on 19 rx meds; nothing is helping me.
Since my lyme disease is so advanced for lack of proper meds the last 34 years, I have severe neuro lyme of brain.
So when Margie posted your single spaced paper with no double spaces in between, I copied it using their " " feature, and broke it up into shorter paragraphs and double spaced each paragraph. Now we brain fog people can read and comprehend it as I've done it.
I didn't change anything else...just shorter paragraphs and DOUBLE spaces galore for comprehension of our lyme brains.
So if you don't have a double spaced copy, etc., I provided the link above of your work & edited by me! I was a former secretary of 26 years and 5 years of data entry operator.
If you see anything I didn't space right, please let me know & I'll edit for our lyme members. We need all the help we can get at this point in our lives.
We have 3 members who have nearly lost all of their vision due to lyme.
Most importantly, YOU can read the comments about YOUR work from us lyme members!
I'm sharing your work also with some very severe MS/lyme online friends of mine. I look forward to hearing back from them of their input of your valuable, time-consuming work!
We hope your work will go to the leading chronic lyme drs. internationally!
It WILL definitely win the national competition you entered. Thank you for sharing your talents, desire, and thoroughness with us all.
PS - What made you write on lyme, ms, & breast cancer if I may ask? SO glad you chose those subjects.
posted
Megan/others, I forgot to say I have forwarded today a copy of your thesis to the National Animal Disease Lab in Ames, Iowa.
I have a close friend there who I recently sent spirochete article too since we had discussed my chronic lyme illness that lunch hour with 2 other friends.
After I sent her my list of 19 rx meds, she went directly to the scientist who knows everything about lyme disease! She spent 30 minutes w/him.
He was particularly interested in my doxycycline hyclae and biaxin which was on my list.
"He wanted me to find out where they send your blood in Calif. for testing. Do you have that info? He said there is an excellent place out there for this kind of thing, but NOT people you & I can contact. There are scientists doing research and they won't take personal calls and letters."
Anyway, this guy is wondering if that is where your blood went cause it's the best place in CA that he would want to see the testing done.
When he heard it was Igenex I was tested at for lyme. His response, "I don't really have any first hand information about this lab. Some of the best researchers and a large Lyme research center are at U. Calif. Irvine"
Now his eyes really lit up when he saw a reference to Dr. Claude Garon of Rocky Mt. LABS, and said he is extremely reliable.
This was in response to Cave76's posting: A sobering lesson about spiroches! by Tom Grier on 3-2-06 on lymenet.
The scientist wasn't at all believing the comment about "reports of granular form of Borrella, which can grow to full size, fully autonomous spirochestes and can reportduce .. but that's neither here nor there when you are looking for answers.
Scientists recommendations to my friend about me:
. Contact your support groups in MINN. & WISC. and ask for the name of a really good doctor at either MAYO CLINIC or A UNIVERSITY HOSPTAL up in 1 of those states, you get your butt up there for another option. He thought my present beginner LLMD is doing me irreparable harm!
==========================================
For any of you in Minn. and Wisc., if you have a name of a really good LLMD at your UNIVERISTY HOSPITAL, please let me know by PM ok.
I know MAYO CLINIC is NOT good based upon all the comments I heard here & my clinic sending a 2nd set of blood work to Mayo, and they tested only 2 and 5 bands for western blot igm/igg! NO LYME NEGATIVE my foot!
Thanks everyone. Hope you have enjoyed reading Megan's personal emails to me.
posted
Megan is amazing and so very appreciated. However, I'm not much of a scientist, and do not really understand the statistical research. It's also really hard to read.
As a breast cancer survivor, I would really like to better understand what her paper is saying, so that I could understand the connection going on between lyme and b.c.
Is there a way to have that section explained to the "common" person? Thanks so much.
Posts: 873 | From WA | Registered: Dec 2005
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bettyg
Unregistered
posted
hopeful,
if you will PM me with your home email addy, I will forward her original showing the tables/charts in tact; that will make it a little easier for you.
Then you could print off my DOUBLE spaced, shortened paragraph to help you too. Single spaced I was lost totally.
I asked for a summary, and above is what she sent me/us.
If you have questions, I suggest you email her directly since her email shows up on the top of her paper ok! Put in subject line that you have lyme & brest cancer & have questions on her paper.
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Betty, you wrote: [quote] Now his eyes really lit up when he saw a reference to Dr. Claude Garon of Rocky Mt. LABS, and said he is extremely liable. [end quote]
I was a bit thrown by that. "Liable" can mean guilty of or responsible for something illegal.
It can also mean "likely" or "apt" meaning counted on to do something specific.
Did he mean either of those? Or did he mean (or say) "likable?" Having heard him [Garon] speak at a conference some years ago, I would agree to that.
He has served as a scientific advisor for the Lyme Disease Foundation and helped edit their journal over the years.
He has also written some good papers. I remember one used as reference by Tom Grier.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I think she meant "reliable."
I'd like to see the teen's paper--who taught her statistics? What did she control for?
TIA.
Posts: 2276 | From united states | Registered: Jun 2004
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bettyg
Unregistered
posted
Ann and Babe, it should have read reliable! uffda; my typing has been the pits lately. I'm still dizzy and wondering if that has effected my typing so bad! I'm off on "home row" a lot; too much for 31 years of work experience.
quote:Originally posted by oxygenbabe: I think she meant "reliable." I'd like to see the teen's paper--who taught her statistics? What did she control for? TIA.
Babe, "what did she control for"? I don't understand control for. Megan's Statistics, everything I know is in her posts above.
Ann, thanks for catching my error; thanks Babe for making the correct guess. Bettyg
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
What I mean is to get reliable statistics you have to control for all kinds of stuff, age, gender, other health habits and risks, diet, etc. Then you get p values and depending on those values it is significant, highly significant etc. I don't think its that easy to control for three separate diseases like that, and I'd like to know how its done but maybe there is a URL to a detailed paper I did not see.
Edit: I just saw where the original post of her paper was. But there are assumptions in the paper based on hypotheses of lone researchers--i.e. that breast cancer has a bacterial origin? There have been some indications that breast cancer patients have higher amounts of carcinogenic chemicals in their breast tissue (such as methylparabens) and some correlations suggested there, but she is beginning with a hypothesis that spirochetal infections cause lyme, m.s. and breast cancer? But one would have to look at other common killers, why pick just those 3 and then say there is a correlation? And then even so, how does one know the cause(s) of M.S. and breast cancer? Were other cancers looked at? It certainly makes NO biologic sense that spirochetes would have an affinity for the breast. If they were to increase rates of cancer, it would be generally.
Posts: 2276 | From united states | Registered: Jun 2004
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bettyg
Unregistered
posted
Babe, sorry, I'm unable to answer your post at all regarding the statistical end.
May I suggest you email Megan, and ask her to reply AS TIME PERMITS to you or on either Daystar's or MY post about her paper so the answer would be there for future readers.
Babe, from your comments; I take it this has been your line of work, so you have a special interest in this one.
posted
Hello, this is Megan. I am glad you are all reading my paper and summary. I hope it is helpful for you.
In response to oxygenbabe's first point, I calculated the probability (p) values for the correlations and they are given in the paper. According to the results, the correlations that I saw are unlikely to be caused by chance.
When I began the research project several years ago solely involving MS, I had no idea that bacteria might be involved. Only after I made the maps that you see in the paper did I come to think that there might be a link between MS and Lyme Disease; the maps revealed similar distributions of the diseases.
I did not pick out those three diseases alone, as you can see from the article. I tested many diseases, some that I reasoned might be linked from by biochemical studies, and some that I used as controls. These controls included external accidents/injuries and viral hepatitis, things that clearly should not have a bacterial involvement. Among the diseases that I reasoned might be linked to MS or Lyme, only some in fact produced significant correlations. All this is in the paper for extra reference. There is also a biological discussion of why I believe these trends are occuring statistically and epidemiologically.
In determining which statistical tests to apply, I referenced the SPSS Statistical Handbook. I referenced other standard statistical texts such as "Computational Handbook of Statistics", which provides good explanations of all the correlations and techniques I applied. The conclusion of the paper discusses several of the variables you mentioned. In the paper, you'll notice I differentiated between number of disease deaths per total living population and per total deaths. The second tends to factor out the age variable. I was careful, however, to avoid "correlation shopping", or running too many correlations. Again, the biochemistry of the different diseases directed the correlations which I ran, though not all of these produced significant results.
Thank you again for reading the paper. I really appreciate your comments.
Posts: 5 | From New Jersey | Registered: Mar 2006
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bettyg
Unregistered
posted
WELCOME MEGAN! Happy to see you joined us to read comments about your paper! Breaking up the long paragraph only at bottom for us neuro lymies...
quote:Originally posted by mbresearch: Hello, this is Megan. I am glad you are all reading my paper and summary. I hope it is helpful for you.
In response to oxygenbabe's first point, I calculated the probability (p) values for the correlations and they are given in the paper. According to the results, the correlations that I saw are unlikely to be caused by chance.
When I began the research project several years ago solely involving MS, I had no idea that bacteria might be involved.
Only after I made the maps that you see in the paper did I come to think that there might be a link between MS and Lyme Disease; the maps revealed similar distributions of the diseases.
I did not pick out those three diseases alone, as you can see from the article. I tested many diseases, some that I reasoned might be linked from by biochemical studies, and some that I used as controls.
These controls included external accidents/injuries and viral hepatitis, things that clearly should not have a bacterial involvement.
Among the diseases that I reasoned might be linked to MS or Lyme, only some in fact produced significant correlations. All this is in the paper for extra reference.
There is also a biological discussion of why I believe these trends are occuring statistically and epidemiologically.
In determining which statistical tests to apply, I referenced the SPSS Statistical Handbook.
I referenced other standard statistical texts such as "Computational Handbook of Statistics", which provides good explanations of all the correlations and techniques I applied.
The conclusion of the paper discusses several of the variables you mentioned. In the paper, you'll notice I differentiated between number of disease deaths per total living population and per total deaths.
The second tends to factor out the age variable. I was careful, however, to avoid "correlation shopping", or running too many correlations.
Again, the biochemistry of the different diseases directed the correlations which I ran, though not all of these produced significant results.
Thank you again for reading the paper. I really appreciate your comments.
Megan, thanks for answering Babe's question that she posted. Babe, I didn't email Megan; she joined us tonight, and I was pleased as punch to see this!
Megan, Ann-Ohio had suggested to me that you should enter your thesis in the Westinghouse contest. Have you? "I hope this paper is entered in the Westinghouse competition as that one gets the biggest rewards and the most publicity. Winners are always on the "Today Show." Great suggestion Ann.
Megan, come again when you feel like it. Glad to see you enabled the PM to work in case someone is bashful about posting but would like to contact you privately thru lymenet's PM feature.
posted
Megan also posted on daystar's original post that had her thesis in. Comments are different than above, so I'm copying/pasting here...
breaking this up and copying also to other post so those folks can read Megan will be doing more on her big project! Way to go Megan! We love you!
"Originally posted by mbresearch: Hello, this is Megan. I am truly thrilled to see that so many people are reading and commenting on the paper. It is really wonderful to hear from Lyme members themselves.
Several people mentioned taking into account outside variables such as age, race, and available healthcare.
I briefly discussed some of those variables, though now that I have heard your comments I am planning on during a more intensive multiple regression to better determine what role each of those factors plays.
In the process of creating this paper, I emailed all that state epidemiologists in the nation.
Although Lyme is a reportable illness, I found that obtaining Lyme incidence data was sadly very difficult. The data as it was reported does not include demographic information.
Using database techniques, I have been able to associate other variables such as latitude, longitude, and elevation.
Thank you again for your support. I am hoping this database will be of value to Lyme researchers everywhere. " Megan
Megan, THANKS so much on behalf of us for coming on here tonight for the 1st time and posting your comments about your college level thesis.
posted
Megan, I'm copying/pasting IAMANURSE's post on the CDC thread; thought you might like to use it in the future when you expand what you did earlier on your thesis. Bettyg
"IAMANURSE posted 07-03-2006 01:05 AM
Provisional cases of selected notifiable diseases, United States, week ending December 31, 2005 (Source CDC MMWR Report)
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