What Is The Hushed Truth About Lyme Disease? A Recovery Story, Part 1.

Introduction

This is part one (1) in a series of five (5).  I will continue to share new information as I proceed in my journey with Lyme disease. I have added a narrative video with each new section. Please read with an open mind. I hope you'll understand how important it is to document the treatment and symptoms. This is my unexpected journey.

 

June 16, 2010...the Day I Found Out.

I found out I was positive for a Lyme Disease antibody on June 16, 2010, a significant day in many ways. For one, it’s my husband’s birthday and it’s also the anniversary of the day I was first contacted by casting agents in LA for a chance to participate in a new reality show. It’s funny how dates stand out. I never dreamed it would have so much significance. But finding out I could have a disease like Lyme was more than I bargained for on that memorable day.


Not the 'bulls-eye rash'!! A strange red bump...unknown if related to Lyme.

This bump started as a small mosquito bite looking thing. I noticed it the first week of June, approximately 4 weeks after exposure. NOT where the tick bit me. It is red, hard, puffy with slight fever in it.
This bump started as a small mosquito bite looking thing. I noticed it the first week of June, approximately 4 weeks after exposure. NOT where the tick bit me. It is red, hard, puffy with slight fever in it.

I was exposed to several tick bites the first week of May this year while enjoying myself on the famous Booger County Cattle Drive.   I didn’t use insect repellent or Deet. I should have. It might have prevented what’s soon to be a long, bumpy ride. I think I had a bit of an invincibility issue that prevented me from taking a can of Deep Woods OFF with me on the ride. Why should I worry about ticks? I’ve been bitten many times in my life, so what does it matter now? I made sure I carried the 40+ sunblock! If only I‘d protected myself against the little devils I wouldn’t be here struggling to type because my wrists are aching and stiff and my elbows are hot. If only, if only…..but I didn’t.

The Controversy

So here’s the deal. I’ll explain this as easily as I can. Lyme disease is a big controversy. I never thought much about it until now. I’ve been reading about it, non-stop, for several days. I learned it's the fastest growing infectious disease in the country!!  Yes, that’s right So how come nobody’s talking about it? What’s the deal? What I’ve learned has appalled and amazed me. You aint’ seen nothin’ yet.

According to the International Lyme and Associated Diseases Society (ILADS), Lyme is the fastest growing infectious disease in the United States today, affecting up to 300,000 Americans each year. Lyme Literate Medical Doctors (LLMD) that treat Lyme disease treat it aggressively & have special training to do so. They use long-term antibiotics, unlike traditional GP’s. For this reason, they’ve been targeted by medical boards and insurance companies. Here's the real stickler: They could lose their licenses because they don’t adhere to the IDSA’s (Infectious Diseases Society of America) guidelines for treating Lyme. The result is preventing many sick patients from getting the treatment they really need, thus leading to further debilitation. Then what happens? The Infectious Disease (ID) doctors end up making the Lyme patients feel like they’re not going to help them. It’s almost like they make themselves the foe of the patient, instead of the advocate. The result? Lyme patients don’t usually have good experiences with Infectious Disease doctors.


Source

This Will Blow Your Mind..........

The big whammy is this: Lyme is in the middle of a big medical/political/government controversy. The medical community is totally divided over whether Lyme disease can become chronic; meaning if a person continually has symptoms, complains of reoccurring problems or has the actual physical proof to show it, the other side of the medical community (mainly ID & GP doctors who support the IDSA) say the patient is probably/possibly infected with another illness, which starts a whole new ordeal of testing, etc. for some other disease. You know what that does? It slows down the process of treating Lyme (for what it really is) and gives the disease more time to advance to the chronic stage! It really boils down to this: the IDSA appears to be the organization who says that Lyme Disease is rare and can be treated and cured through the IDSA standard guideline of treatment.   

NOT! The medical/political/government controversy ends up putting the ID doctors on one side while the LLMD’s , who are literate in the knowledge of the disease and treat Lyme patients, end up on the opposing side of the fence. It shouldn’t be that way.

Specialized Lyme Disease Test? There's more................

In addition, there’s an even bigger controversy (which I won’t go into now because it opens up a whole new can of worms) concerning which labs are accurately testing for the Lyme antibodies. An individual should have a specialized Lyme disease test through a laboratory that specializes in Lyme. They can’t even decide which test is right or wrong, pointing fingers saying, “This one is not reliable” or “This one is supported by the CDC, not that one”. So on and on it goes.

My Lyme Logo
My Lyme Logo

What's Our Choice?

I’m the one suffering here….don’t I have a choice? Yes! So what am I doing about it? I’m proactive in my recovery. I went online and found support groups (see links below), organizations and other sources that supplied me with information on where to find a Lyme Literate doctor. I began reading everything I could find on Lyme disease, including both sides of the controversy. It was after reading the testimonies and experiences of chronic Lyme sufferers that I became determined to take control of my treatment.


I found a LLMD in another state. What was amazing was I called them one morning, faxed my lab information at noon, and at 2 PM they called and gave me an appointment for 2 weeks later. What a comparison to how the local ID doctor’s office handled my request for an appointment: First, I had to have a referral from my regular doctor. Then my regular doctor had to fax all the labs to him so he could “review” it first. Then I sat and waited for his office to call me and tell me when I could be seen. The ‘friendly’ receptionist made it plain “the doctor can’t see you until September…..” Finally, the local ID doctor’s office called and gave me an appointment; 2 & ½ months from now! When I asked what to do about my symptoms between now & then, she replied, “We can’t tell you until you’ve been seen”, in a dismissive tone. I plan to have a talk with her when I call back to cancel my appointment.

Finally, today....

At this point my symptoms are manageable, but uncomfortable. The LLMD plans to retest me & send the sample to a reliable testing center. Now I’m just waiting to see the doctor and praying my symptoms don’t get out of control. The hardest thing to deal with is the fatigue and muscle weakness. But I’m not going to give up. I want my life back, I want my strength back, and I want to feel normal again.

I refuse to lay down and die!

“Ticks suck! Beat Lyme disease; keep fighting!”

Read the other parts to my story here:

(Part 2: Hushed Truth About Lyme Disease)

(Part 3: Hushed Truth continued....)

(Part 4: Hushed truth continued.....)

(Part 5: Hushed Truth Continued/Final Chapter..)

****For therapeutic purposes, I'm sharing my personal account of this confrontation with Lyme disease in the video below.

Part 1: My video diary narrative.

**********************

Just for today, I will be unafraid. Especially I will not be afraid to enjoy what is beautiful, and to believe that as I give to the world, so the world will give to me. -Kenneth L. Holmes

Note: If you have been diagnosed with Lyme disease, please participate in the survey at the following link. "Lyme disease in 50 states"

More by this Author


I welcome comments.... 77 comments

zzron profile image

zzron 6 years ago from Houston, TX.

Very good information, I hope things get better for you. I will keep you in my prayers. Please keep us posted on your progress. God bless you and stay strong :)


Gary Barrett 6 years ago

Great blog, donotfear! Are you aware of another excellent lyme forum, the largest lye forum on the internet? It's www.lymenet.net. Great forum where you can get answers to many questions, support and encouragement. Much like Healing Well only larger. Plus they give LLMD referrals under the heading "Seeking a Doctor". Another great thread there is "Medical Questions". This isn't necessarily "better" than Healing Well, no, it's just that it's more active and a lot more information can be found there. Plus they have a great search function that allows you to search for tons of information that goes several years back.

One more thing on your book list. A great book to recommend is, Beating Lyme Disease" by Dr. David Jernigan. This is one of the most comprehensive and informative book on Lyme disease out there. You can purchase it on their website www.HansaCenter.com

Keep up the great work you are doing. I look forward to coming back and watching your progress!

Gary (gwb on Healing Well and Lymenet) : )


donotfear profile image

donotfear 6 years ago from The Boondocks Author

zzron: Thank you so much for your concern. I feel compelled to get the truth out about this awful disease. All prayers are welcome!


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Gary Barrett: Hey dude...what's up? Yes, I have gotten most of my very best information from Lymenet. I have a link to them above. Great support group as well as Healingwell.com. Yes, I've already taken advantage of the LLMD doctor referal...and found one! Have appt on July 6th. Also I already have the book "Beating Lyme Disease" ordered. Like I say above, I won't lay over & die. Bad thing is though, the bump on my arm is much worse & turing dark. I'm afraid they'll have to pump antibiotics in me before I can get an accurate Lyme test thru Igenex. Yall please pray for me!! I'm just beat.


Ivorwen profile image

Ivorwen 6 years ago from Hither and Yonder

I've a neighbor who's wife has Lyme disease. I've only met her a time or two, because she live in TX, where her doctors are at. Hoping the best, most accurate results for your appointment.


Hello, hello, profile image

Hello, hello, 6 years ago from London, UK

You are very kind to think of others at a time wehre you have so much worries yourself. I look forward to read from you again and in the meantime I wish you a speedy recovery and God's blessing.


breakfastpop profile image

breakfastpop 6 years ago

I wish you all the best in your struggle. I have seen first hand what Lyme Disease can do. Every time I see my grandchildren run barefoot on the grass I get sick.


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Ivorwen: Thank you for your well wishes

Hello,hello: Thank you for the blessing. I really need it right now.

breakfastpop: I appreciate your understanding & feel with you your concern for your grandchildren.


sheila b. profile image

sheila b. 6 years ago

Quite a few years ago my toddler granddaughter was diagnosed with and treated for lyme disease and all went well. It sounds as though things have gone way downhill in the medical community since then. All my best wishes are with you for a speedy and thorough recovery.


50 Caliber profile image

50 Caliber 6 years ago from Arizona

Ms.Annette, always liked that name, lost the argument naming my daughter. I'll send prayers out for you. I have seen the untreated side of Lyme from a hunting buddy. We hog and deer hunted northern California every year and one particular year the deer ticks were unbelievably prevalent. We would get literally 100s on us every day while hunting the 3rd fork of the EEL river. At the end of the day it was dump your pockets and jump into the fridged waters and get naked and do the monkey thing checking each other where we couldn't reach or see. I picked probably 50 off his back every day. It was amazing, I told him we needed to just say F%$k it and go home, but after waiting all year for vacation and a 12 hour drive he wanted to stay. I personally can roll naked in a tick bed and sit in the mosquito infested areas like swamp lands in Missouri and never get bit or never had a tick latch on, but raked a bunch off of me, I must taste really bad. One guy said it was because I smoked and he started bumming cigarettes to test his theory, it didn't work. Anyway Lou is 55 and now in a lock down nursing home so he can't wonder off. He was diagnosed with Lyme but they fall short of admitting it to give him a multitude of symptoms and the onset of long and short term memory loss, as well as many other neurological symptoms. It was a case of a lot too late for him as well as a mass of large red whelps on his hide. By day 2 of 7 I just about begged him to go home and he refused, I wish I had taken a picture of his stubborn ass.

Hopefully he is a worst case scenario due to the shear number of bites. On the morning of the 3rd day 6 of 8 went home. Lou refused and I still had zero bites, never got one the whole trip. This was in 1989 he was a youngster of 34 and bullet proof, when I left California in 1994 he was pushing 40 and on disability, my last trip to California was in 2000 and he was in the nursing home. I went and saw him 3 days over a two week stay and he recognized me on the 2nd visit and we had a normal talk about where he was and why. on the last visit he didn't recognize me. I started calling him every day and some days he knew and others he didn't and as time went on he just didn't any more.

We should have left and he should have seen a doctor while they could appreciate the huge number of sores that covered him. Something to take seriously, 50


donotfear profile image

donotfear 6 years ago from The Boondocks Author

sheila b: Thank God your grandbaby was treated early! I'm so glad she's had no more symtpoms. I hope I've caught mine early enough to prevent any chronic problems later. Thank you for your interest.

50 Caliber: Dude!!! You have got to write a Hub about what you just posted in the comment above! That is unreal!!! You have done everything. It's obvious your friend is suffering from untreated Lyme. Very obvious. If it would have been treated agressively early on, he'd probably be mobile & well to this day. My prayers are with him...thank you for contributing to the comments. As usual you have far surpassed the realm of interesting comments. Thank you.


embee77 profile image

embee77 6 years ago

Donotfear - I have been missing you and now know why you've been tied up. I know several people who have had Lyme disease over the past ten or so years, and they've all eventually recovered. Still, it's a mystery condition for most people. Why is the Medical Establishment so slow to respond to obvious needs? My love and prayers are with you. Please continue to advocate for yourself! Sharing your story can only help others. Many thanks!!


donotfear profile image

donotfear 6 years ago from The Boondocks Author

embee77: God bless you. Thank you so much. It's good to hear some success stories out there. The key is getting it quickly & aggressively before it turns chronic. I'm praying we nip it in the bud before it goes that route. I'm still working and believe it or not, I have continued my workouts 3 times per week at Curves, though I go at it with less intensity, just enough to keep moving. I pay for it some nights, but I feel it's necessary to make myself grit my teeth and build muscle even though I'm tired. I appreciate the well wishes. Thank you!


fetty profile image

fetty 6 years ago from South Jersey

Please see my other response on your forum page. You will recover and I am so glad you shopped for a Lyme specialist. I had to do the same. It seems to me you have the disease and you will beat it. But it will sit in your body in remission forever. I have never had my symptoms repeat themselves and my bout was about 14 years ago. My first doctor was into enableing his patients to "live" with the disease. I asked my second doctor to cure me as I was not interested living in pain and going to support groups. I also did some research and there was a lot less written back then. Joint pain is the first symptom and this can lead to severe arthritis as well as a dozen other chronic illnesses if not treated. My opinion as to why there is the controversy over wether this it to be treated as a chronic disease or not would be money issues. I'm sure some people would run right out and try to collect disability payments. I was disgusted with the attitude of my first doctor because he wanted me to redefine my life through Lyme. I refused to do that. But I know I could still suffer from the effects if it ever reactivates . So I am careful to tell my doctors about my history with Lyme. Please remember, you will be helped and do not overly stress yourself out. I know you are on the right path. I know of only one other lady here in S. Jersey who probably has undiagnosed Lyme. She was treated for Lupus???? and still has joint pain , is aging very poorly and just won't believe she has Lyme. You have an open mind and you are surely showing the symptoms. And yes, I believe the pink bump is related. Best wishes for a speedy recovery. You will do fine.


donotfear profile image

donotfear 6 years ago from The Boondocks Author

fetty: Great news. It's always good to hear a story of somebody who recovers. I'm going to take it to heart. I needed to hear this today. Thanks.


Art 4 Life 6 years ago

Great hub Annette! I hope you continue to improve, and I am just so sorry you got Lyme's while on the cattle drive...I hope that your new doctor can give you some updated information and treatment...again, best wishes dear friend~


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Art....HI! If I hadn't been so cocky to think I'd never get Lyme, I wouldn't be in this fix! My bad. You told me to use some OFF!!!


Veronica Allen profile image

Veronica Allen 6 years ago from Georgia

Donotfear - you really opened my eyes to this disease. I had no idea that this was such a controversy and the video you added really gave us so much more information as well. I truly appreciate you sharing this information with us. I hope everything goes well on your journey. I will be keeping you my thoughts and prayers and will keep following your story. I am flabbergasted at the controversy that is surrounding this. The fact that it beats how many people have aquired AIDS is just mindboggling. - I have no words.

Stay strong!


susanlang profile image

susanlang 6 years ago

Annette: Thank you for sending me an email with the link to your story. Your video was hard to watch without me tearing up. My deep concern and loving prayers are being said on a daily basis.

You've been forced into a new life test of bravery Annette and you have chosen to become a role model for everyone while on your road to recovery. You will beat lyme disease and help so many with your new founded knowledge as you share your health fight with us all!

Don't ever give up...the power of the human mind is an amazing tool on your road to recovery..but...you already knew that because this is just one more small hurdle for you. Your a winner already and one day soon we will watch you announce your victory on YouTube.

Love ya like a sister and my good thoughts will stay with you! I will follow your quest on the road to GOOD HEALTH.


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Veronica: Thank you so much. Coming from such a soldier of faith like yourself, it means so much more. It's easy to see the controversy, the struggle, & the denial once it is placed in front of the public to see. It just hasn't been considered 'top importance' for some reason. I hope I can help contribute to change all that. It's out of my hands, for sure, from the beginning. I know Who to thank for my strength!

Susan: You are speaking a positive outcome over my situation. That's good! The more it's spoken, the more it will be. I always thank you for your support. I must keep in mind that it's really not me in control here, but a God who gives me the reins to plow ahead & get in action. Hang on, cause I'm in for a bumpy ride. !! Thanks so much for your encouragement.


ediggity profile image

ediggity 6 years ago

I am really glad to see you are making the most out of this situation. Get well soon.


donotfear profile image

donotfear 6 years ago from The Boondocks Author

ediggity: Thanks for your help!


heart4theword profile image

heart4theword 6 years ago from hub

Thank you for the warning! This video you put together, will help other's, I'm sure they will appreciate you speaking up about your personal experience. I hope and pray you will find healing, that can help you and others.


cheaptrick profile image

cheaptrick 6 years ago from the bridge of sighs

Hello Annette.I don't know what to say...You have always been there for me...I feel impotent to help...I don't pray but for your sake I'll try..You are a dear virtual friend and I'm very concerned for your health.

Virtual love to you

Dean


donotfear profile image

donotfear 6 years ago from The Boondocks Author

heartfortheword: Thank you for the kind words & encouragement. It's my sincere wish for everyone to be aware of this dangerous disease.

cheaptrick: Your words are so kind. And best of all, I know you're sincere; not speaking the words to see where they may splatter. It makes me feel much better to hear such kind compassion & concern. I know I'll beat this. Positive words spoken over me in faith will be the key to recovery. Healing must come from within...we can do all we know to do in the natural, but when it comes to disease attacking our bodies - wham! So with these words I say: Thank you!


Mary Merriment profile image

Mary Merriment 6 years ago from Boise area, Idaho

Very informational article. It's great that you sought out all the information you could find on this issue and are willing to take matters to a different level. It is up to us to be responsible and knowledgeable about our health and well-being. I wish you the best!


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Mary: Thank you for the well wishes.


Specialk3749 profile image

Specialk3749 6 years ago from Michigan

Thank you for the information! We live in a place that has quite a few ticks. Last fall my daughter was bitten by a deer tick (the ones that carry the disease) and I watched her carefully. Thankfully, nothing came of it. I will keep you in my prayers as you recover!


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Specialk: Thank you for sharing your comment. I appreciate any prayers!


WordCrafter09 profile image

WordCrafter09 6 years ago from New England

I read your Hub and watched your video, because just yesterday my niece was diagnosed with Lyme Disease. As you can probably imagine, I'm looking for information because until now all I've really known about Lyme Disease are "the basics" that most of us know about. I wrote a Hub and then linked yours, here, as well as a bunch of others, to it. (She thought she had a migraine headache, because she has a history of them; so she didn't see a doctor until the headache and neck pain lasted a few days.) I just thought it was worth mentioning that severe head pain and neck discomfort can be yet one other sign of Lyme Disease.

Thanks for sharing your own experience. From what I've read, full recovery is entirely possible a good part of the time.


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Wordcrafter09: You are absolutely right about the neck pain & head pain. I've been having it for weeks. Please please encourage your niece to get to a LLMD immediately. Please follow the links in my hub. It will lead you to the doctor referral link. I just had my first appt. today...thank God I actually talked to somebody who knew what they were talking about! If she has just recently been infected, she can most certainly come out on top. Let me know how she does. Good luck and thanks for reading.


Kim from the Lyme group 6 years ago

Hey! How did your LLMD visit go today? Please share!


WordCrafter09 profile image

WordCrafter09 6 years ago from New England

donotfear, good luck with your own condition. Hopefully, it will iron out.

My niece ended up going to a large metropolitan hospital after spending a couple of days at a community-type hospital. The one thing I wonder is why, when doctors have to know that headache and neck pain can be associated with Lyme Disease (and that it's a common disease, as well as tick season), nobody ran the tests for it when she was in the first hospital. They ran tests for everything else, did a spinal tap, EKG, did a brain scan (or whatever they do to make sure all is right with the brain), etc. Why not throw in the Lyme Disease tests to give her a head start on the results?

If we have a sore throat it's routine that testing for Strep is done. I don't get why it would be any different with Lyme Disease.


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Wordcrafter: The answer to your question is easy. General MD's & hospitals that aren't specialized in Lyme (they are few & far between) don't know to test for it for many reasons. First, it's not been ingrained in them to do so because it's not considered serious nor recognized as a chronic disease by the CDC or the Infectious Diseases Society of America. So, you see, they are part of the "good ole boys club" standards & won't accept the new evidence that's been put in front of their face for years about Lyme: that it must be treated aggressively, quickly before it turns chronic. They stick to the "good ole boys" standard that is supported by the above groups. Lyme professionals have had special training through the International LYme & Associated Diseases Society of America, which supports & pushes the treatment that is most effective, while the above are still in denial. Also, I might add, the 'above' "good ole boys" only support certain labs that are approved by them to test for lyme; NOT the Lyme specialty lab, Igenex. I'm sure there is profit involved there for them.

I am begging you to get your niece to a Lyme Literate doctor immediately. Get it treated NOW like it should be.


OnlineHub profile image

OnlineHub 6 years ago from Fresno, CA, USA

Excellent information About Lyme Disease. I like reading your article and thanks for sharing it. 5* plus recommendation!


rmcrayne profile image

rmcrayne 6 years ago from San Antonio Texas

Have you considered seeing a naturaopath or homeopath? I'm sure you would be shocked at what they know, and what they can do. (This coming from someone who spent over 30 years working in the world of Western medicine.) Best of luck on your journey.


donotfear profile image

donotfear 6 years ago from The Boondocks Author

ONline Hub: Thank you for the recommendation.

rmcrayne: Yes, I have considered naturaopath. I checked to see if there was one in my city, however he doesn't really have much experience dealing with LYme, but was open to it. I plan to complete this round of standard medicince, then go natural to rebuild my system. I thought is was a good plan. Thanks for reading!


susanlang profile image

susanlang 6 years ago

I watched your second video on you tube. How are the treatment drugs doing? Any improvement yet?


BettyG, Iowa lyme activist 6 years ago

Thank you Annette for a well-done hub; I've never heard this expression for this type of thing until now.

FANTASTIC job on your 10 min. video; you told it like it is.

I've had chronic lyme for 40.7 years; 34.5 yrs. MISDIAGNOSED by 40-50 drs. UNACCEPTABLE! Never once did they mention the possibility of lyme disease or had I seen an embedded TICK OR BULLS-EYE RASH!

I worked full-time 28 out of my 30 yrs. 7 month secretary career. I used the most sick leave in my huge division of my job; always got lectures about how much sick leave I'd used and the MANY MAJOR SURGERIES I incurred being off work 6 wks. at a crack!

You showed some sites above, and I wanted to make you aware of another good one where we too offer LLMD request info showing $$ and insurance info if at all possible.

mdjunction.com lyme board; I'm 1 of 5 group leaders there and have been sending out llmd info for at least 4-4.5 yrs. nationwide and internationally!

I've also send to newcomers my own welcome letter with the basic, important links to get them started on their lyme/co-infection journey.

Another woman started a lyme flyer on our site, I added considerably to it where it shows more reputable sites and sites on contacting CONGRESS on our lyme bills that have been there for 11-12 years now!

She also started a drs. flyer showing some of the symptoms for SPECIALTY drs. that is great.

Also started a TICK PREVENTION sheet and shows the link for TICK MARKER showing the sizes & names of ALL TICKS; 5 sheets FULL of important info crambed onto each page.

You can find it in LYME FACTS at mdjunction site.

Also mdjunction has 700 OTHER disease/symptoms boards for education and support; fyi only :)

MORE BOOKS TO ADD:

PJ LANGHOFF's, IT'S ALL IN YOUR HEAD SERIES OF 3 BOOKS!

1st 2 are personal stories; hers continued dealing with the legal system of trying to get her kids back in custody dispute. 1 book has 80 personal stories in it INTERNATIONALLY!

3rd one is the charm though ALL ABOUT THE IDSA called THE BAKER'S DOZEN, LUNATIC FRINGE, JUNK SCIENCE!! She has over 1,000 links in it showing where the IDSA said this in their studies and then do just the opposite. She did this with a fine-tooth comb disecting all of the info she has in it.

PAM WEINTRAUB'S .. CURE UNKNOWN; many personal stories in there of some of the leaders in LYME ACTIVISM including Phyllis Mervine, from CALDA, CALIF. LDA!

another 10 minute video of a 16 yrs. IOWA teen who has been paralzyed and on a ventilator the last 2 yrs. She was bitten by a tick; has bartonella & babsiosa plus other MYSTERIOUS UNDIAGNOSED diseases causing her to be paralyzed, very touching. She was 11 when this occurred!

http:/?/www.youtub?e.com/watch??v=mDZuvKvH?5Ig

http://?www.stormla?kepilottrib?une.com/sto?ry/1641250.?html

Best wishes; great job on organizing this and cute graphics to help add a little humor on such a debilitating, mind-robbing illness we all share!

I hope you are involved in the LYME ACTIVISM; we have a very active one also on our mdj site.

My 2 IOWA FEDERAL SENATORS ARE;

Tom Harkin, CHAIR of HEALTH... committee

Chuck Grassley, CHAIR of FINANCE .. COMMITTEE

both very influential; I have 1-2 emails and/or phone calls to them monthly.

Iowa's FED HOUSE REP TOM LATHAM, R, staff member has been very helpful to me too. He set up a 3-way conference callfor 3 people with CDC, the committee who has been sitting on our LYME CONGRESS BILL and him discussing our lyme bill, and the IDSA REVIEW TEAM!

gabby bettyg, iowa lyme activist/

mdjunction group leader signing off :) hugs/kisses


BettyG, Iowa lyme activist 6 years ago

I forgot to say I've helped over 40,000 - 45,000 lyme/co-infection members !!

THIS has been rewarding to give back when I started my lyme journey OFFICIALLY DX 6 yrs. ago this month.

Something good has overcome the BAD/SADNESS/MADNESS of this dog gone disease.

I don't know if i overlooked it or not, but did you show dr. burrascano's 08 lyme treatment guidelines on your site?

I started a post about your site here on mdj lyme board; here it is in case you'd like to join and comment on it, etc. We'd love to have you as well or to at least check out our site.

Check LYME FACTS and MEDICAL/TREATMENTS; I get daily CDC, NIH, & IOM/INSTITUTE OF MEDICINE updates on certain subjects I'm interested in and post what I feel help me/others on the board who have posted about those specific things.

FYI, my late dad was NEVER dx with chronic lyme and co-infections; but he had them for at least 80 of his 86 years of life!

Now that I've educated myself; all his other diseases, symptoms, etc. point to LYME again and again plus being a farmer walking beans/corn, picking up rocks, working with the harvest, hay bales; you name it; he's done it.

Just wished I'd known of my own correct dx before he died 8 yrs. ago; we could have had his blood tested !!

It's because of Dad being sick his entire life that I'm giving back as we were on the RECEIVING end of it planting/harvesting our crops/hay, etc. When he was better, he'd return THE GOLDEN RULE over and over.

Annette, may I make 1 suggestion please:

For those of us with severe neuro lyme, could you have SHORTER paragraphs of 1-2 sentences max and hit enter twice so we can comprehend and read them.

This has been 1 of my top 5 things having LOST the ability to read long paragraphs; I just can NOT do it. I start over & over without finishing.

Thanks for your consideration Annette :) God bless you.

BettyG, Iowa lyme activist :)


BettyG, Iowa lyme activist 6 years ago

Did I mention my NEURO FORGETFULNESS! good grief charlie brown! shaking my head in disbelief...

http://www.mdjunction.com/forums/lyme-disease-supp...

perhaps when you write your next blog you could copy the direct link to YOUR link above so we could come here and read them as they occur? big thanks

bettyg, iowa


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Susanlang: Thanks again....I'm figting still!!


donotfear profile image

donotfear 6 years ago from The Boondocks Author

To BettyG, Iowa Lyme activist! Wow!

Thank you for a ton of good information. I'll be right over! I'd be delighted to share my articles with you guys!! What a lift up. I sure needed it. Thank you again so, so much.


maggs224 profile image

maggs224 6 years ago from Sunny Spain

What an excellent and informative hub this is I have voted you up. I am only sorry that you have contracted this awful disease and I am appalled at the treatment you received from that receptionist.

I hope and pray that you get the best test results possible and that the treatment that you receive will result in the best possible outcome.

I am sure that this hub and your video diary will be a tremendous resource and help to many people searching for answers. God Bless and keep you


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Maggs224: Thanks for your support and encouragement. It means a great deal to me to know there are so many who are rooting for me & my recovery. I have a positive outlook for FULL recovery.


Cagsil profile image

Cagsil 6 years ago from USA or America

Hey Donotfear, nicely written hub and I have faith in you to overcome the adversity you face. You're a very strong woman, whose Will will show the truth about the human body. I am of the understanding that with positive reinforcement(own self remaining positive) and proper understanding, you can and will be strong enough to beat it back, and win out. Remember always, the body can heal itself in many different aspects and the power of the mind is extremely important to good health. I look forward to reading your progress forward and should you need to vent, you are more than welcome to contact me. Thank you very much for being proactive about your struggle and not letting it get the best of you. I salute your strength and determination. Off to check out your other hubs. Please remain positive and accept my positive thoughts in your endeavor. :) You are to be admired. :)


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Cagsil: Thanks for so much encouragement. It actually is very hard to keep a positive frame of mind with so much other negativity & worry surrounding me. I'll stay positive. It's in my blood.


brightforyou profile image

brightforyou 6 years ago from Florida

Hi donotfear, thanks so much for sharing your journey through lime disease (which I knew nothing about being British). Great hub and I loved the video!


donotfear profile image

donotfear 6 years ago from The Boondocks Author

brightforyou: Thank you so much for reading.


JeanieR profile image

JeanieR 5 years ago from Sequoia National Forest, CA

Wow! Annette, this is a chilling account of Lyme experience. God bless you for taking the time to do such a comprehensive education on the problem. I'm signing up to stay tuned.


donotfear profile image

donotfear 5 years ago from The Boondocks Author

JeanieR: Thank you very much. I hope you will read the other sections of the series...it's been a long fight!


amy jane profile image

amy jane 5 years ago from Connecticut

Thank you for this information - I will continue to read the rest of your series. I was diagnosed with Lyme today (Happy New Year, huh?)! I don't know when I was bitten or how long I've had it. I thought that it was rather easy to treat until I started reading about it. I think people are generally misinformed. Thank you for clarifying a few things for me!


donotfear profile image

donotfear 5 years ago from The Boondocks Author

AMY JANE: I'm glad you stumbled upon my articles. It's crucial that you get to a Lyme literate MD right away. Go to www.lymediseaseassociation.org to find a LLMD near you. Let me know how you do!


Leafy Den profile image

Leafy Den 5 years ago from the heart

What a story and what you have been through! It is very brave and generous of you to share this experience with others. I owe you a thank you as well since I will be travelling to visit friends of mine who live in a forest region which is highly populated with deer, and which has been linked to lyme disease cases. I probably would have been like you were and felt that the insect repellent was unnecessary. But, after reading your story, I will get and use the OFF. I watched your video linked from your profile page as well and am so glad to see that treatment was working. I hope that you continue to heal and feel better daily! I will continue reading.


donotfear profile image

donotfear 5 years ago from The Boondocks Author

Leafy Den: Thank you for reading my story. It means a lot to me to know that I may have prevented someone else becoming infected. It's out there! Everywhere, all states! I'm touched to have inspired you.


Tina 5 years ago

If you are interested in natural medicine check out this site: www.windroseclinic.com. They are amazing and gave me my life back!!


donotfear profile image

donotfear 5 years ago from The Boondocks Author

Tina: Thank you for the link!


Curiad profile image

Curiad 5 years ago from Lake Charles, LA.

This is awesome information, I am waiting now for the results of my Lyme tests. I hope the lab it is sent to is a good one.


donotfear profile image

donotfear 5 years ago from The Boondocks Author

Curiad: Let me know how it turns out. I'll help anyway I can. Be sure and research the links and go to my website Arklatexlyme.com or lymenet.org.

Good luck!


TINA V profile image

TINA V 5 years ago

I find this hub interesting. You’ve shared important information about your experience. Your video is a good reminder that we should never neglect insect bites or anything that may affect our health. This is an informative article. Next time, I’ll try to follow your other hubs about Lyme disease. But I hope everything is fine with you now.


ronniebaby 4 years ago

hello dnf thanks again for your video I hope I have your willpower in fighting this horrific disease a travesty for the american people this is a wonderful site god bless you all


donotfear profile image

donotfear 4 years ago from The Boondocks Author

Ronnie baby: Like we used to say in the 70's - keep on truckin'!!! You will make it.


Jake 4 years ago

I really think if you could add footnotes and a bibliography it would make your article more reputable. I understand maybe the other websites could give me verfied info but this article doesn't really stand as a source on its own.


donotfear profile image

donotfear 4 years ago from The Boondocks Author

Well, Jake...........

I have links to my sources. If I was submitting this for a research paper, I'd have all that information. But since this is about my personal experience told in first person, I didn't add the references at the bottom. This article isn't a source, but a life experience story. Thanks for your input.


MAGICFIVE profile image

MAGICFIVE 4 years ago from New York

Ticks do suck! I hate them! My husband got Lyme last year - along with some other tick born illness - and my daughter got both Lyme AND Erlichiosis! It as not a good year!!!! Now I am paranoid about walking in the woods...(with good reason, I think)!


donotfear profile image

donotfear 4 years ago from The Boondocks Author

Magicfive,

Hang in there. It's a long road, but there is light at the end of the tunnel.


LearningWarrior 3 years ago

Came across this article while researching Plum Island. None the less, here it is. It was recently communicated to me how Lyme and Sypillus mutated AT Plum Island. This occurred because of negligance.

Lyme disease is NOW, not only transmitted by "Ticks" but also sexual activity as well as, just about every biting insect so far ( other than spiders ).

I live in a State that has an abundance of "Myalgia" diag-nosis..... over 83% of those have been further tested and confirmed they are Lyme Positive - geez

We are often warned of the false negative/false positives regarding conventional testing methods.

Please take the time to get educated about the possibilities of - IODINE

Both internally and bathing

I have listed another interesting link as follows:

http://www.angelfire.com/biz/romarkaraoke/lymeart....


donotfear profile image

donotfear 3 years ago from The Boondocks Author

Thanks Learning Warrior. You're so right about Lyme and coinfections. I've know some who have gotten lyme from a mosquito bite. I've also explored the iodine solution. I took it religiously for about 3 weeks...then I got really sick. I backed off on the dose, but stopped altogether to give my body a rest. I've started having joint pain again so I'm going to ramp up the iodine again. Thanks for your input here. It's a scary world we live in when the very one's we rely on to keep us healthy don't know squat about the real cause of so many ailments.


Kelly Clover 3 years ago

I have suffered lierally for decades with undiagnosed Lyme disease. An expensive PCR test finally exposed the truth regarding the true origin of nerve malfunction, damaged eyesight, a very stiff neck, unexplained skin rashes, and extensive arthritis.

A so-called infectious disease specialist in San Angelo, Tx insisted it was nothing but a

false positive, never mind all the symptoms I had. She stated specifically that she was unwilling to provide any treatment for Lyme disease unless I retested using the badly

flawed tests recommended by the CDC. She stated further that she was unwilling to

consider any treatment other than short term antibiotics. She also insisted that I make an appointment with a neurologist because she didn't believe the PCR test re-

sults were valid.

I've been on my own with respect to Lyme disease treatment. Too few doctors exist

around here who treat it and the ones who do charge too much and are too restricted

in the types of treatments they will try. I'm currently using a BCX Ultra Rife machine

and Lyme nosode drops. Both seem to have a powerful effect on me, but it's not clear

if they are helping to cure the infection or doing something else. Each one intensifies

the effects of the other. These therapies are causing my skin to burn or itch, some-

times triggering hyperfatigue, sometimes triggering mild nausea, sometimes making

neck or finger pain get worse.

I react with great anger every time I see a CDC website on Lyme disease. There is so

much misinformation and outright lies. They clearly aren't looking out for the best

interest of patients. They are enriching entrenched special interests instead.


donotfear profile image

donotfear 3 years ago from The Boondocks Author

Kelly, I know how you feel. It's infuriating how countless persons suffering from chronic LD are brushed off. The blatant denial by ID doctors is ridiculous, saying it's a false positive. It can be summed up best by this quote from one of our own Lyme literate doctors: "In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.........." --Dr. Kenneth Liegner.


Brenda Durham 3 years ago

donotfear,

I'm sorry.

I'm sorry to hear you're still dealing with this disease, and sorry I didn't read your article before now. You had told me about this, I believe, quite some time ago?...... but I got sidetracked or something and selfishly focused on my own problems.

Please forgive me? And I'll lift you up in prayer. I know you're a Believer too, and God will keep holding you!

Your video really brought you up close and personal; good job!

I gotta laugh at your accent----because it sounds a lot like mine! LOL.

Love you girl. God help and bless you as time goes on.


donotfear profile image

donotfear 3 years ago from The Boondocks Author

Thanks Brenda!! I've been in recovery since late 2010, thank God. Doing pretty well these days, too. I appreciate the prayers. I still have joint issues and evere TMJ but for the most part, consider my self in the healing mode. God bless!


Brenda Durham 3 years ago

That's good; I'm glad you're doing okay!


Kristina in MA. 21 months ago

Hi, I am curious to know how are you doing. I was diagnosed earlier this year but they say it was caught very early and treated with Doxy, Just recently Ive been sick again. I wonder if I caught it again bc its so big here in the state of Massachusetts and I joined a bootcamp the workout in the dunes by a beach in Rhode Island. I sprayed off but didn't pray my hair. I went from working out n the morning & at night to having no energy to do anything. I'm scared.


donotfear profile image

donotfear 21 months ago from The Boondocks Author

Kristina, if you got only 2-4 weeks of Doxy it probably did not get it. That's the standard treatment, which is ineffective. Especially if it was a month or more after the infections. It would be best for you to get on Lymenet.org and check out the forums. You can get lots of support there. You really need to see a Lyme literate doctor. Also check out http://www.ilads.org/. They use the treatment guidelines that, in my opinion, are more effective.


colorfulone profile image

colorfulone 9 months ago from Minnesota

This is so interesting. I see that you have written more articles on Lyme Disease that I may want to read at a later time. Its crazy when the medical field is the way it is...people need help now, not weeks or months from now. My brother had this and was put on antibiotics for a lengthy time that did little for his recovery until he had swelling on the brain, then he got superior medical care in a hospital and a fast recovery.


annasmom profile image

annasmom 8 months ago

Great article(s). I got more information here then I got from my health care provider. Thanks for an informative hub!

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