What Is The Hushed Truth About Lyme Disease? Recovery Story, Part 2.

The journey continues......

If you read the first article about my fight with Lyme disease, then you'll understand the obvious hurdles I face. I'm continuing my story, to the best of my ability, in chronological order. This is not an enjoyable series of articles. My purpose for documenting the illness is to maintain an accurate record of my symptoms during the healing process. 

 

There Is Lyme Disease in Arkansas!

I'm not the type person who'll sit back & do nothing when I get sick. From the beginning, I've done everything possible to find out as much as I can about Lyme Disease. I was appalled that the majority of the medical community & the informed public had such a misconception about Lyme. So I got in action. I decided to contact UAMS in Little Rock to find out what their protocol was for treating Lyme Disease. I envisioned a large group of young, working doctors striving to learn the mystery of the illness because UAMS is a learning hospital.

I was unable to locate a doctor associated with UAMS that was considered a "Lyme specialist" or "Lyme literate doctor". I conducted a little research & found someone who had special study in the subject.

Here is a copy of the email response I received after I inquired with this individual. He happens to be a microbiologist. I asked him for help locating a doctor in Arkansas. Here is his response:

Dear Donotfear,
I’m sorry to hear about your illness. To the best of my knowledge, there are no Lyme disease specialists at UAMS. This is in large part due to the fact that Arkansas is not an area where Lyme disease is considered to be endemic. However, we do have a strong infectious disease group here and I encourage you to contact them if you feel that course of treatment is necessary. Unfortunately, I don’t have any clinical connections, so I can’t put you directly in touch with someone. I have attached the link for the Infectious Disease clinic. Sorry I couldn’t be of more help.
Sincerly,  Mr. MB

(Okay, so I can understand that. He honestly couldn't tell me the name of a Lyme Literate doctor because he doesn't know one. I can live with that).

But......is he kidding? Lyme disease NOT an endemic in Arkansas?! Good grief, I know of two people from the same area who have been battling the symptoms for years! And it's not considered an endemic in Arkansas? I'm freaking out.

Why do so many people in Arkansas have the disease if it's not an endemic?

I'll tell you why.....because the testing centers they use aren't accurate. The CDC won't count the test as a 'positive' unless a certain number of bands show 'positive'. Take my test, for example. It came back positive for only one band of Lyme antibody (41), so they wouldn't count it as a positive. (I had my test done in Washington state). It went on the 'record' as a negative! OH? So I just have a 'little' Lyme, not much.......not enough to count, just a little, huh? Don't get me started.

As you can see below, the actual test shows 'negative' for lyme, yet 'present' for one Lyme antibody.  So the CDC says Not Positive.

Actual copy of my test results.

I emailed him back...

I'd like to point out that I replied to the microbioligist with my surprise that they don't consider Lyme an endemic in AR. Here’s my response:

Thank you for the information. I'm amazed that there is not a LLMD at UAMS. I'm also surprised that Lyme disease is not considered "endemic" in Arkansas. I believe it's because of misdiagnosis. I know of 2 persons living in NWAR (from the same area where I visited) that have been sick with what they call "tick fever". The symptoms recur frequently and one of the women has arthritis, stiff, etc. I'm just becoming very aware of what a serious problem this is. I hope that there will be a study in Arkansas soon; or more accurate testing. By the way, I tested positive for only one band so CDC won't recognize it as an actual positive, from what the test says. I really believe it's more prevalent than anyone knows. Thank you so much and I will follow up appropriately. You were thoughtful to respond in such a timely manner.

Sincerely, Donotfear

I know for a fact that in a certain section of the state there are many families who have Lyme. Of the two I mentioned above, one already has rheumatoid arthritis. An anonymous person from the area informed me that at least 3 out of 5 families in this particular area have one or more members with the disease. None are symptom free at this time, all have received the "standard" treatment from their local medical community, and each individual has varying symptoms, including children. I don't have advanced statistics to show you, but I do have the statements of those who've been affected. All I know is this: there's a large amount of people from this area with "tick fever", as they call it.

Is there a Lyme Disease Cover Up?

 I can't go there now..........My tirade has ended. Time to move on now....here's my symptoms.

Knees

Here's a description of sensations I've been feeling & sensing:

As of today, the pain in my knee caps is a bit worse. I actually jogged to the mailbox yesterday, though. It seems to come & go. Going up stairs is a challenge, too. It just wears me out. My legs feel wobbly a lot, & heavy.

Mainly, my pain is in my knee caps, shins, & elbows. Sometimes is just feels "weird"- like....Sort of hot/warm, much like a magnet is in the joints. Then one day, the glands in my neck were hurting, like mumps. Then it's my cheek bones. I've pushed myself though, & continue my workouts at Curves, though I go at a much slower pace. I feel like keeping muscle strength is a priority.

Yeast

I have a weakness for sweets & carbs. With this mega antiobiotic, I guess it's just best to go on the Atkins diet while on such a tremendous amount of medication because it's low on carbs, which turn to sugar, then feeds the yeast. I have some thrush trying to take over in my mouth. The whole inside of my mouth, gums & all, is really sore. I bought some Kefir, a yogurt cousin, like milk. The stuff is nasty...so I sprinkle some Splenda in it. Just swish it in my mouth, then swallow. Then it leaves a coat on my tongue. Sounds gross, I know, but with this disease we can't afford to be modest. I also got some pure coconut oil. I take about a tablespoon in my mouth & hold it as long as possible. It seems to sooth it quite a bit. If I get worse, I'll call the doc. I forgot to mention the Probiotics I"m taking twice a day to replace the "good bacteria" that are killed off with the antibiotic.


Elbows

As far as other symptoms, my elbows, especially the left, bothers me worst. It aches all the way down into my arm. I can't pick up my clipboard with my left hand, yet I can push the equipment at Curves without a problem, for now. The right arm is only slightly impaired.  I refuse to stop, but it's hard.

Overall fatigue.

Then, of course, there's the fatigue. Dragging, dragging............. I haven't missed a day of work since I started back on antibiotics. Amazing...but I get that crazy feeling a lot, then want to cry, then throw & break things. Guess I should have taken the docs advise & taken the Clonopin when he offered it. But I refuse to get started on any Benzodiazapines. That's a whole other ordeal!

I'm taking many supplements including Vitamin D, C & others. I think that, overall, I'm doing quite well. I haven't had a super bad Herxheimer reaction this time, with the exception of one day when I was so confused & foggy, I had trouble answering & remembering questions.

I'm going to beat this thing! Like I said before, the disease is already whipped in the spiritual sense. I've done all I can do in the natural. Now it's up to me to remind myself daily that it's out of my hands being handled by a much greater Physician.

My reminder:

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10.

Read Part 1 of my story.

Read Part 3 of my story.

Read Part 4 of my story

Read Part 5 of my story, the final chapter.

*************I'm sharing the account of my continuing journey in the video below.

Recorded on July 11, five days after starting aggressive antibiotics.

More by this Author


Comments 61 comments

Hello, hello, profile image

Hello, hello, 6 years ago from London, UK

I am so so sorry to read all that and if I could I would give your health back. With all my best wishes.


zzron profile image

zzron 6 years ago from Houston, TX.

I hope things are getting better for you. My birthday was on the 11th when you made this video. I want you to know after reading Part 1 of your story, it inspired me to write my hub called "Fight The Good Fight". I hope you will take a look. My prayers are with you. http://hubpages.com/health/Fight-The-Good-Fight-4U...


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Hello hello and zzron: Thank you so much for your encouragement.


gusripper profile image

gusripper 6 years ago

Courage is the only word.


sheila b. profile image

sheila b. 6 years ago

Your frustration is understandable. My granddaughter did get better and has no lingering effects, so just look ahead, it will get better.


Art 4 Life profile image

Art 4 Life 6 years ago from in the middle of nowhere....

Good hub, dear friend...there is surely much more to the mystery of Lyme's disease...more that is not told, or is understood, as of yet. Hang in there, take care of yourself, and know that you will improve with time...keep your positive outlook, and look ahead...I am keeping you in my prayers for a full recovery..

Art


cheaptrick profile image

cheaptrick 6 years ago from the bridge of sighs

Hi D.I called a friend after reading this,he's a research guy at U of F.He told me that the nature of Lyme's changes so it's a chase they are doing to completely cure it.He got technical and I don't understand the terminology but he ended with this"tell your friend to Try to endure,we're almost there".I want to encourage you but don't know how.Please try not to leave us[Selfish I know]cause it would be a great lose to your friends here...and you know I hold you in high regard!Your virtual friend

Dean


Veronica Allen profile image

Veronica Allen 6 years ago from Georgia

Donotfear, all I can say is that I hope things get better for you (and for all those suffering from this disease). I cannot imagine what you are going through right now. To top it all off, the frustration of not being able to get any answers just adds to the complexity. Keep fighting the good fight. We are all cheering for you.


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Gusripper: Thanks....I needed that today.

sheilab: Thanks....I'm glad your granddaughter is doing well. Thank God. I appreciate your kind words.

Art4Life: My friend & buddy, thanks for your encouragement. We all know I won't go down without a fight. This thing has already been beaten spiritually, over 2000 years ago. It's done, finished, over. It's up to my body to catch up with my healing! How's that for a positive attitude! Go girlfriend...wait till next year when I hit the trail with you again. I'll bring the OFF bomb & soak in sulfur. No Ozark tick will ever harm me again. It's defeated.


Paula Gignac 6 years ago

My husband was tested today for Lyme Disease. We will know the results Fri. He is an endurance runner, very hard working, hyper individual, and has just been wiped out lately. He has no energy, and hurts from head to toe. I hope he has better results from his test. Lyme is very prevalent in our area. There have been quite a few cases just on our road. This is not a disease that needs to be taken lightly. Arkansas should be ashamed of itself! Pennsylvania had better be on the ball too! The CDC needs to have a better test!


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Cheaptrick: Thanks so much. Wow, that's encouraging news. U of F? Hmmm.....I hope they have a whole team on it. Oh, and I don't plan on 'checking out' anytime soon. I'm not disabled, am still working (dragging) AND trying to do everything else, but it's taking it's toll. I'm too spunky to kick over now, anyway. I got too much activism to do! It's those who are already chronic that I worry about. Thank you for your heartfelt comment.


mbhbarb 6 years ago

Hi. Thanks for sharing your experience. I have Lyme and coinfections and have been on antibiotics since September, 2009. Like you, I've had issues with oral yeast overgrowth. Very unpleasant. I was taking two different kinds of probiotics daily along with a prebiotic, and I used kefir, and I followed a strict low-carbohydrate diet and couldn't seem to get rid of the yeast. Then a doctor mentioned BioK to me. It's a small yogurt shot that has a high concentration of probiotic (good bacteria) in it. That was two months ago, It took about a week to work, but ever since then my mouth and tongue have been normal. It feels like a miracle. That stuff really worked for me when nothing else did. If you still have a problem with yeast, you might want to try it.


cmany profile image

cmany 6 years ago from Colorado

You can get better...I have been fighting this for nearly 30 years - aggressive abx for more then 12...and it wasn't until I took it into my own hands within these past 2 years that I have finally found a way to beat it...

Diet and Supplements play a HUGE role, especially for those who have had it long term - or have quickly become chronic...

I am finally near remission - Coinfections seem to be in remission tho - so that's a good thing...

Keep posting - and I will try to get around to posting here what I have been able to do to get so far in such little time...


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Paula Cignac: Let me hear from you about your husbands test. I'm concerned. You know you can find out everything you need on the links I provided from my first article as well as this one. Good luck!


donotfear profile image

donotfear 6 years ago from The Boondocks Author

mbhbarb: Thanks for some great suggestions!

cmany: Great news for you! Yes, please do post here what you did to create a healthy immune system to fight this thing off. I appreciate any information I can get.


Ign Andy profile image

Ign Andy 6 years ago from Green Home Office

Thank you for sharing this information, I believe your name shows us exactly who you are since I believe need a great courage to write this hubs and publish it.


marlenejon 6 years ago

Hi I am so sorry for what you are going through. hang in there I live in ny hudson valley. I got bit by a tick 14+ years ago I now have late stage chroniclyme plus all co-infections I have been on 9 IV pic lines 1 port line there isn't anything I haven't tried. It went into my kidneys then into my heart and into my brain it's a mess I lost my life at age 40 yrs old. since I got this everything has changed. I als am a grandmother and would love to play more with them then I do but there is always something happening to me it's very frustrating the fatigue is terriable I understand completely what your going through I will say I had to wait 2 yrs for a diagonosis. and I do have 1 of the top lyme drs in ny. if you get frustrated I will give you the name of my dr. and his # and you. will beable to stay here with my husband and I for free I will help you anyway I can.You have a friend in NY. my e-mail is wsjon@msn.com if you want to chat privatley. and your right my husband and I think there is a cover up or something going on. in NY everyone has or knows someone who has it or has a family member or 2 that has it. God willing you and I will and everyone else of course have a healing. but if you need help I'm here. take care of yourself. and don't let anyone tell you your not sick this is a serious disease.... take care


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Ign Andy: thank you for such an uplifting & complimentary comment.

marlenjon: Wow, thank you for such a gracious offer. I have a LLMD a few hours away, thank goodness, but if it ever comes to it, I may travel to NY! Let's just hope I get well & don't need to come to NY except for fun & travel. I'm so sorry you had to wait so long for a diagnosis. It must have been horrific, not knowing what was wrong. And yes, I believe something is fishy about the origin of this disease. My heart goes out to you. Thank you so very much for offering to help. I'll save your email address. God bless you.


bayoulady profile image

bayoulady 6 years ago from Northern Louisiana,USA

Part two was as jaw dropping as the first. I think misdiagnosis IS the big problem. A case in point-me. I lived in MT. View, AR for six months in 1998 and was bitten by ticks(several ). I went to the local doctor, and he said (INSISTED)it was a spider bite. Baloney. When I moved back to LA six months later ,the red raised circle (1/2 in in diameter)was still there,still tender to the point of at times oozing fluid.My doctor had my exam records faxed and concurred with the AR doctor,just a spider bite. My insurance won't pay w/o a referral. So..humph!One doctor said it was an ulcer.okay, says I....what caused it and what do I do?So he gives me a cream at $60.00 for a tiny tube. Didn't help.

It's 12 years later, and it's still there. I now have bilateral lymphedema, arthritis, chronic costa chronditis, Printzmetal angina,asthma,fibromyalgia, and hypertension. None of these ailments were present except for fibromyalgia and costachronditis before what I believe was tick bites. I'm not saying the bites caused it, I'm saying what a coinquadinky. I guess I've just given up on pursuing it. Most days.Sorry so lengthy!


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Bayoulady: I never heard of the bulls eye rash 'running & oozing' fluid. Maybe that's why they thought it was a spider bite. It sounds like you have all the symptoms. You know there's a Lyme literate doc in LA....if you'd like information, I'd be glad to refer you. It never goes away. You could still get better with the right treatment. This is another example of misdiagnosis...just like you said. Thanks for sharing.


bayoulady profile image

bayoulady 6 years ago from Northern Louisiana,USA

Would I have to have a referral from my doc? So far, they just pat me and say it's nothing. Bet it would be something if it was happening to them. I would like that info on lyme literate doctor in LA.


H.C Porter profile image

H.C Porter 6 years ago from Lone Star State

ive known of a few people who have struggled with this disease and it is painful to watch them suffer, although I am sure not as painful as being the one with the disease with no sense that there is much being done to help them. I must admit that I am not educated on the disease or any of the problems that are associated with it-but you have sparked a curiosity in me-and a wonder of why the CDC would not take more of an active stand in your area (and I am sure the same goes for many areas which we do not know of). Very well done, informative hub- Thanks for sharing the valuable information, and enlightening us with the issues you are experiencing.


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Bayoulady: I'm going to send you a private message. Don't give up!!!!

H.C Porter: Thank you for your input. The reason the CDC & the 'good ole boys club' at the top don't take a more active stand for the disease is because they are trying to cover something. Read these links:

Lyme is caused by a government bioweapon.

http://www.elenacook.org/bwsept06.html

http://www.elenacook.org/spirowarfare.html

contagiousness

http://flash.lymenet.org/ubb/ultimatebb.php/topic/...


Cagsil profile image

Cagsil 6 years ago from USA or America

Hey Donotfear, another nicely written hub. I don't have much to add, other than what I said in your first hub on the subject. I will remain to keep positive thoughts for your success and also keep my faith in your ability to handle it. It's a troubling time, but do know that you will get through it, and become a stronger person for it. Thank you for sharing your struggle. ;) :D


donotfear profile image

donotfear 6 years ago from The Boondocks Author

Cagsil: I'm glad for your support.


SALCATZ 6 years ago

I understand what you are going through. My wife has cronic lyme disease and we can't find a Doctor that will admit she even has lyme disease let alone treat her!!!

We live in Southwest Missouri and I don't know what to do? My wife has been unable to get out of bed for the last four weeks. I thought you might know someone she could see?


donotfear profile image

donotfear 6 years ago from The Boondocks Author

SALCATZ: Yes, get her to a LLMD as soon as possible. The area you live is full of Lyme, but CDC won't recognize it at such. You must go to this link, to search for the doctor network in your area. http://www.lymediseaseassociation.org/index.php?op... It's the Lyme Disease Association referral system. Because LYme doctors are under so much persecution, we try not to throw the names around so much so it won't raise a flag. You can find links to other help on any of my 3 stories here on Hubpages. Please get her to a LLMD fast. Good luck, & God Bless.


True Cures profile image

True Cures 5 years ago from Payette Idaho

donotfear,

I'm asking people with lyme to sign a petition to get medicine to investigate cures for not only lyme but all diseases, the catch is the cures cannot be patented.

Here is a link to a petition that can be used to persuade science and medicine to investigate cures for lyme that cannot be patented. The claims cannot be proven false or true without an investigation. I hope you and your followers will sign this petition to help end Lyme Disease once and for all.

http://www.change.org/petitions/view/will_medicine...


donotfear profile image

donotfear 5 years ago from The Boondocks Author

True Cures: Thank you for posting here. I went right away& signed the petition. As you know, that is one of the main controversies with Lyme: men with financial interests have patents on accurate testing they won't release. Probablly have patents on cures, too! I'm all for an investigation.


CG 5 years ago

I contracted Lyme in AR along with many other species of Borrelia, erlichia(2types)and that was just the start. It was a battle to get properly diagnosed as I was told by AR soca ihad ms, lupus fibromyalgia Cfs and many other things. I was positive for all of those autoimmune illnesses oddly enough. I am also DNA positive for bb and many others.

Obviously my story is a long one and the journey continues. Thankfully I am finally doing better than ever expected. I am extremely aware of keeping moderation iny life and know my boundaries. I don't mean it one bit for pity but going through all the "regular"(ha) bb symptoms and in addition having 5 types of seizures, having lost my vision for a year anda half, sleeping over 20 hrs out of the day and so much more I'm finally well....under control and while work hasn't been an option for a very long time I now feel I have a life or at least one I am comfortable with. I have a great llmd I go to in mo. My dad also is positive but thankfully didn't get as sick as I did.

I apologize for the rambling but it used to be way way worse:) i would love to help you if there isanything I can do and know my dad feels the same. You can probably find my story if you google Lyme pharmacists AR. I don't know where to put my email address....

Pace yourself and hang in there. It does getbetter but honestly never the same. Like I said though I am now content and know all thingshappen for a reason.

Lyme is very alive in AR so don't let them tell you differently. When my dadcalled the state health dept to report my case they told him they would rather not because AR is the natural state and it's economy based on people coming to hike, float the buffalo, and other outdoor activities so they don't like to report such things. Yeah.....I was shocked as well. So much so that I called the them head of the dept myself who oddly was a vet (human state health dept and head a vet???) Anyway he repeated the same words to me. Yes I am on the list just so you know. There's nothing right about hiding and misleading people. We are in a very sad situationbin AR as it's one of just five hot spots in the nation for Lyme but diagnosed as some type of autoimmune disease. Scary.

Please contact me if I can be of any help.


donotfear profile image

donotfear 5 years ago from The Boondocks Author

CG: Wow! You couldn't have said it better. I'm amazed and appalled at the response of the health department when you called to report it.....I'd like to post the reponse on the Lymenet forums. That explains why AR had no reported cases last year. I was just talking to my friend today and she was saying that 'they', whoever they are, say there's no Lyme in Arkansas, yet she has it and knows someone out of every family in the Ozarks that has it! She even said..."I dont' understand why they won't report it.." Now we know why. This is ghastly! Why not write a letter to the editor of the Little Rock newspaper? It's time to stir up a hornet's nest in AR!!!! I'll try to find you by googling Lyme pharmacists Arkansas but if not, please send me a private message through Hubpages. Let's stir the nest and start stinging em where it hurts!


RA 5 years ago

Wow ,, just stumbled on your video,, I think my sister has lyme disease going on now for a year,, She had the tick bite,, and then the bulls eye rash ,, 10 days of antibiotics,, but now 9 months later,, a lot of different symptoms that come and go,, I live in Bryant Arkansas, close to Littlerock,, who is your specialist,, She has a lot of the same symptoms,,

Thank You and Gods Blessings that we can all beat this terrible disease.


donotfear profile image

donotfear 5 years ago from The Boondocks Author

RA: Please send me a private message if you need to know a qualified Lyme specialist. We do not freely post names of our LLMD's. They treat with aggressive antibiotics that the IDSA and government bureaucracy want to limit, therefore they go after the docs who treat Lyme. Your sister must see a Lyme literate doctor immediately! Please contact me.


William 5 years ago

Hi my name is william im 17 and about a year ago I started getting sick and since then i have had similar symptoms that you have. Its hard for me to concentrate on things, Its hard for me to remember thing (I can only remember bits and pieces of stuff)I have read one book i enjoy 5 times and I can barely remember any of it, im always tired always they even put me on adderall but im still tired (I used to be in football then workout 3 hours after), my joints aches, my health has been abnormal since then....Ive been to the doctor a lot but they didn't know what was wrong but I had a lyme disease test done and my p41 was present just as yours (my mom had lyme disease and thought i did but when she got it they didn't believe her because they said lyme disease was not present in Georgia) Igave up on doctors and now I dont really have a desire to do much cuz i try and fail. I started to think it was in my head but now im happy just to find out what has been wrong and that im not crazy :) my mom also said that even with just p41 present you can have lyme disease...your story helped me understand thank youso muchhhh :)


donotfear profile image

donotfear 5 years ago from The Boondocks Author

William, God bless you. Please get to a lyme literate doctor!! Go to the lyme disease referal website.

http://www.lymediseaseassociation.org/index.php?op...

The longer you wait, the harder it is to treat. Fight fight fight!!!


Shannon 5 years ago

I notice you said you are from NW Arkansas. That is where i live also. Im 39 i was diagnosed with Borrelliosis 7 or 8 years ago. I had to go to DR, Crist in Springfield MO. My brother got checked after me and he has it too. Just today Ive found out my 9 year old daughter has it. The disease is just rampant in my area but nobody seems to care. I know of a lady who got it just awhile back also. I would like to talk to you by email if I could iivydriff@aol.com


baboosh44 4 years ago

Hi there, I've enjoyed seeing your story here. I have lived in Arkansas for 14 yrs. now, originally from CA. I've been suffering from all kinds of symptoms for a long while and working with a GP in LR who has been testing me for years for Lupus, Fibromyalgia, Chronic Mono, RA and various things due to symptoms. About 1 month ago he tested me for Lyme and I tested positive 2 out 3. He wants me to see a specialist in MO. but I can't(doesn't put me on Doxy and I don't know where or what I'm supposed to do or expect now. I've likely had lyme for a long time. So much of my body is effected. Is there someone local that anyone who has found and that accepts insurance? HELP.


donotfear profile image

donotfear 4 years ago from The Boondocks Author

baboosh44: If your doc was wise enough to refer to the the LLMD in Missouri, then maybe he would work with you and confer with Dr. K about your treatment. As far as I know there is not a Lyme literate doctor in the whole state of Arkansas. They either deny that it's here, refuse to treat you or say you have something else. You need much more than just 2-4 weeks of Doxy.

It is very important that you get in to see a Lyme literate MD. I'll PM you with info on another in nearby TN who may take insurance. I'm sorry you are suffering. You can also go to my website arklatexlyme.com. I have some information there, but you've got to see a Lyme literate doctor. Take care & look for my message.


Sharla M 4 years ago

I have had the same battles and struggles as you it seems. I was treated for fibromyalgia for a year before I had to beg the doctor to run a tick panel. The arthritis in my hands is almost unbearable but since I finished my antibiotic and I don't expect it to improve. It was nice to know I no longer could be treated like a narcotic seeking junkie, but it would be nice if the symptoms associate with Lyme were taken more seriously.


bev/bt 4 years ago

Thanks for the info and support. I have just started

aggresive treatment . I have a very informed and wondeful doctor. He is very angry because of the cover up . He believes lyme is in widespread i n Arkansas .more later god bless


Becky Gillette 4 years ago

http://www.arkansasonline.com/news/2012/aug/06/let...

LITTLE ROCK — Disease’s reach wider

Buddy Gough’s feature on ticks was informative, but I believe misleading on one point: that Lyme disease is “rare in Arkansas.” According to the International Lyme and Associated Diseases Society, Lyme is the fastest-growing infectious disease in the U.S. today, affecting up to 300,000 Americans each year. It’s often misdiagnosed as chronic fatigue, fibromyalgia, multiple sclerosis, dementia, Alzheimer’s, ADHD or a host of other “chronic illnesses.”

I tested positive and was diagnosed with late-stage neurological Lyme disease at three independent clinics in Texas, Arizona and Missouri after eight years of misdiagnoses in Arkansas. Yet, according to the Arkansas medical community’s protocols, I do not have Lyme.

Arkansas will have its first physician to be certified as a Lyme Literate Doctor (LLMD) this year, and his motivation is personal as well as professional. His wife, who has been chronically ill, tested positive for Lyme last year, as did he and his six children. Once he started doing research on Lyme, he re-evaluated more than 180 patients at his clinic with various “chronic illnesses.” About 150 tested positive for Lyme. So much for “rare.”

For objective and truthful information, I would recommend Coping with Lyme Disease by Denise Lang and Kenneth Liegner, as well as the websites underourskin.com and arklatexlyme.com.

“Rare” is definitely not an accurate portrayal of Lyme in Arkansas, in my opinion. In fact, the opposite is more accurate and frightening.

LINDA SHARP


donotfear profile image

donotfear 4 years ago from The Boondocks Author

Thank you for posting this article here, Becky!


Mountain Granny 3 years ago

Do not fear, will you please email me at: mountaingrannysorganicherbs@gmail.com

We really need to talk.

Thanks! :)

May God bless you for your courage and heal you!

Granny


MountainGranny 3 years ago

Linda Sharp, will you please email me at the following address: mountaingrannysorganicherbs@gmail.com

I am very interested in learning about this new LLMD coming to AR; my whole family has BB and various coinfections as well and it would be great not having to drive several hours to the LLMD we now use.

I would also like to discuss with you and others about starting a Lyme advocate group in Arkansas.

Thanks and God bless you!

Granny


Michele 3 years ago

Infectious Disease clinic here in Arkansas is a JOKE!!! There is one Lyme Literate doctor I know of in Little Rock but he is maxed out at 500 patients there and is currently opening a new practice. I can Not post his name here because our witchy government likes to make our lives harder and theirs for GETTING WELL! My daughter and myself both have Lyme and had Rocky Mountain Spotted fever right along with it, she also got Mono with hers. The co infections are real but you need a real Lyme doctor who can spot them on many symptoms because the testing is wrong on these so many of the times. That being said 5 years of fighting tooth and nail before we found anyone with a brain. I have been to the haha Infectious Disease specialist UAMS and they were as dumb as a door nail. I saw 3 doctors THREE with a positive for Lyme and an antibody for R.M.S.F. Sick as a dog my local hospital and two doctors sent me there after being bit and running fever and hurting like something out of a horror movie. I could barely walk and my lungs hurt so bad I had been having to sit up straight in bed to keep from feeling like I would drown and you know what they said to me. Have your heart and lungs checked and loose a little weight! LMMMMMMMMMMMMMMMMMMAO!! So I did and my heart was fine but that doctor did something the others wouldn't nor would the I.D. CLINIC he ran all the proper blood work and found it was NOT my heart it was LYME. It was effecting my lungs and red bloos cell count which I am sure you all know what co infection causes this with Lyme by now. My point here is this these real Lyme doctors know they are trying to cover up Lyme in Arkansas too. You can't! I won't let you and you will NOT steal another second from my families lives with your lies dear ignorant Arkansas doctors. I know of over 2,000 people in my lil area alone who have this. So to those who are lied to; Wake up it's here!! Stop killing people and being incompetent and living in your lil fantasy world trying to make a killing off of us who are truly suffering just because you have in your mind it's NOT here. No more will I be your victim, I tell them what I need or can't take now and do NOT let them make money off of me with their ignorance to this disease. They will test you for everything, tell you are crazy, make you suffer something horrible but the only choice you have is to fight and keep looking for someone who knows what they are actually doing besides draining your pocket and live savings. This disease is very complex and treating it like you would others in anyway is a JOKE. That's all I have to say. For those of you here who are sick trust your instincts not your doctors and fight there is HOPE.


donotfear profile image

donotfear 3 years ago from The Boondocks Author

Michele, this is a dynamic statement. I'm reposting this under my other article which is strictly about Arkansas Lyme http://hubpages.com/health/Lyme-Disease-Hidden-Epi...

Your fighting spirit is courageous! This is so true. Did you know that southern states don't have the same reporting practices for LD as the northern states do? They are given the choice on how they report, by state. What is the CDC trying to hide? Get the picture...........


Michele 3 years ago

That's fine hun. Thanks. Yes, I have found this out the hard way too. I defiantly get the picture that is how they are hiding it!! The Neuro part is driving me crazy this week.......trying to detox like crazy. Find me on Facebook. https://www.facebook.com/Michele8Pace. Add me please. I am on a Lyme World Protest Group and they are having a big one next month in Saint Louis, Mo.


Michele 3 years ago

bev/bt 8 months ago: If you get this ...Can you contact me please on the doctor you have. Regarding your comment below. I added my facebook link above. thanks!!!

Thanks for the info and support. I have just started

aggressive treatment . I have a very informed and wondeful doctor. He is very angry because of the cover up . He believes lyme is in widespread i n Arkansas .more later god bless


donotfear profile image

donotfear 3 years ago from The Boondocks Author

Great going Michele! You are a real trooper. I wonder if I'm already on your FB. I'll go there now. I already heard about the Missourie protest. I can't get anything going in AR; I'm just beat.


Kay Eure 3 years ago

Hi my name is Kay Eure and I am 16 and I am suffering horribly from Lyme disease symptoms. My doctors refuse to test me for it. Please if you see this and you had or have Lyme disease email me at kaysoccer@icloud.com. Please please help me. It's been almost a year and its so hard to live my life like this. Been to numerous doctors and they think I'm crazy. Please help


MD 3 years ago

OMG! I feel sad for people who don't feel well, but come on don't think that a couple hours of internet research is a substitute for medical knowledge. Most symptoms of Lyme like many other diseases are non specific. The fact is there are essentially no cases of Lyme in Arkansas uless you have traveled to an area where it is present. I'm not doubting many of you feel badly but this is not the answer. I only write this in response to the 16 year old above. Please don't start what seems like a vicious cycle for some in searching for a disease for every symptom of life.


donotfear profile image

donotfear 3 years ago from The Boondocks Author

Kay Eure:

Have your parents taken you to several doctors? It's very important that you share this with them. They need to know how desperate you feel at this point. I understand how you must be feeling. Can you direct your parents to the LDA website? There is a doctor referral link there. Here is the link:

http://www.lymediseaseassociation.org/

Hang in there. Don't give up!


RockyMountainMom profile image

RockyMountainMom 22 months ago from Montana

Great hubs! If you are active on Facebook, or even if not, you would be a great addition to the 1,000 letters lyme campaign!


RockyMountainMom profile image

RockyMountainMom 22 months ago from Montana

Sharing this in multiple Lyme communities today!


donotfear profile image

donotfear 22 months ago from The Boondocks Author

Rocky Mountain Mom: Hi! Yes, I am already on the 1,000 letters for Lyme campaign. I attend the protest rallies with the Mayday Project, also. We may already know each other!!! Cool! Please feel free to pass on any of my articles.


RockyMountainMom profile image

RockyMountainMom 22 months ago from Montana

Fantastic! Were you in Philadelphia? If so, you may be in photos in my Lyme Activism hub---some photos are from Philadelphia last month and some are from San Francisco last year.


donotfear profile image

donotfear 22 months ago from The Boondocks Author

Yes, I was in Philadelphia. Right there with you, can you believe it; two Hubbers who found each other because of a common issue. Amazing!!!


RockyMountainMom profile image

RockyMountainMom 22 months ago from Montana

Oh my goodness, I should have recognized your hat right away!


donotfear profile image

donotfear 22 months ago from The Boondocks Author

Smile.


jhudson 18 months ago

I was diagnosed with lymes 7 years ago. I'm from arkansas and can't get help. People think I'm crazy. Tired depression achiness constant fever at least two to three times a month. On top of all this I have no insurance. What's a person to do. There are days I want to give up,just stop fighting. I'm so tired. I need some answers and some help.


donotfear profile image

donotfear 18 months ago from The Boondocks Author

jhudson:,

You have help. Please know there is a Lyme literate doctor in Little Rock!

MD I. Torin Gray

Contact: 501-224-5220

Location: Little Rock AK, 72205

MD Jonathan Forester

Contact: 318-641-0865

Location: PINEVILLE LA, 71360

MD Ronald Wilson

Contact: 940-387-6248

Location: Denton TX, 76210

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