Part 5, Final Chapter: Hushed Truth About Lyme Disease, A Lyme Disease Recovery Story
86
The Home Stretch
This has been a difficult trip. From May through August I experienced the worst fatigue I've ever experienced in my life. It's like coming out of the fog into the the clear blue sky. Thinking back to that time, it's almost like a dream. Did I really experience all that? Was I really able to look & act normal to those who didn't know, or was I just fooling myself?
From looking at my videos, I can see where I put up a brave front. The real struggle was inside; the odd sensations, delusional thinking, & strange thoughts within me now seem vague & far away. I can't believe I wrote my previous articles. My body was so weary each day, yet my mind would continue to swirl with thoughts & images, unable to shut down as I lay in bed each night craving the sleep I so desired. An insane disease that depleats the body of energy, yet robs it of rest.
It's been over two months since I wrote the last article about my illness. The good news is that I feel almost normal again. The time off from work helped me a great deal. My mind has cleared & I've experienced no more Herxheimer reactions to my medication. During my last visit to my LLMD (Lyme literate medical doctor), I reported that my anxiety & sleep had improved from a 2 to a 10, on a scale of 1 being worst, 10 being best.
I attempted to ride my horse again but found he'd been idle for so long, he was a bit 'prancy' & forceful, prompting me to shorten my ride & consider building my confidence before trying to ride again. I plan to send him to a trainer for a few weeks, when I can obtain the funds, who will work with both me & Sport to regain the confidence that was lost. I'll feel better about riding, plus, it will restore the zeal I once had.
Symptoms Remaining.......
When I say I feel "almost normal" I mean that I'm functioning just under the level I was before I got sick. I feel pleasant, ambitious, & energetic again. I'm working on a regular basis without sundowning at the end of the day. I don't feel overly stressed. I'm sleeping much better these days. As a matter of fact, I notice that on my days off I become very, very sleepy in the afternoon & grab a quick nap when I can. When I was experiencing Lyme symptoms, I would become tired & sleepy during the day, but was unable to go to sleep. It was exhausting.
Here are the remaining symptoms that are bothersome enough to list:
1.) Joint/muscle pain.....on a scale of 1-10, ten being worst, fluctuates from a '3' to an '8' daily. The discomfort in my left elbow & arm has become so bad I now wear an arm brace, the one made for 'tennis elbow' or tendonitis. The symptom has now moved to my right arm, though not as extreme. In addition, the pain has traveled to my knee caps, giving me the sensation that my knee caps are not part of my body; the cartilage between the knee & shin feeling stretched or grating. I went to an orthopedic doctor about this. He Xrayed my elbow & knees &, thankfully, I have no permanent damage. In addition, he saw no evidence of arthritis; only inflamation. The symptom has journeyed to my wrists, knuckles, & fingers which hurt from time to time, though not at the extreme of the elbows.
2.) Stiffness......is a problem all over. Getting out of the car seems to be a bit challenging at times. It's like my limbs don't want to respond like they used to. That's frustrating. I'm a bouncy ole chicken, used to darting about here & there, often compared to a freight train with hyper activity. I can still dart, I just can't respond fast enough! Leg stiffness is the worst, especially in the early morning. I don't drop things like I did when I was really sick, but my fingers just don't have the strength to really work to my satisfaction. I don't dare try to pry a stubborn lid from a jar. In doing so, it sends a huge stab of pain up into that oh-so-tender elbow of mine!
3.) Lip twitches.....are annoying. Seems like my upper lip goes into this spasm several times a day, just barely twitching. Not enough for someone else to notice, but just enough that it's aggravating. It's focused on the right side; just draws up a minute, then calms down after a bit, never lasting more than 60 seconds. Don't know what this is about, but I hope it stops soon.
4.) Letter reversal......when writing or typing. Just pops up out of nowhere. I'll be typing away, then when I proof-read, I find these occasional letter reversals. Like this: revresal, dot'n, get taht dog, otday. Doesn't happen all the time, but it rarely, if ever, happened before I got Lyme. Kind of like dyslexia.
Gee, this isn't so bad now, is it? I don't know if this is permanent or if the symptoms will disappear eventually. All I know is this: I CAN & WILL overcome!
Celebrate! What I will CONTINUE to do...
I WILL..
I will go for my chiropractic adjustments regularly to maintain a healthy spine so it will allow my body to heal normally! I will go to Curves 3 times per week & continue resistance strength training with cardio to help with flexibility! I'll continue to practice excercise & re-hab work at home! I will use my best judgement about adding or stopping medications and/or supplements!
I will continue to promote Lyme Disease awareness & let our voice be heard! I will not give up on my recovery! I will allow myself to be angry when appropriate & divert that anger into positive energy!
I WILL SURVIVE, I AM ALIVE!
Rejoice! What I CAN do.....
I CAN..
I can lift my 25 lb saddle onto my horses back! I can climb over the gate & crawl through the barb wire fence! I can lift a 50 lb bag of feed from my trunk & carry to the feed room!
I can tote my 4 year old grandson around after he gets attacked by a rooster! I can feed the horse & the cows! I can climb a ladder & clean the gutters on the house!
I can go to work & assess clients effectively! I can communicate with others & be understood! I can encourage people to get better!
I Guess this is the Final Chapter....
I'm going to close this series of narratives about my struggle with Lyme disease. This battle was won, but the war-monger may be lying in wait to erupt again at the least sign of weakness. I'm treating this like it's the end of the war. Though the battle scars remain, I'm through the storm, for sure.
I have one more appointment with the Lyme specialist doctor. I'm hoping I'll be off all medications by then. My goal is to raise my immune system enough so that my body can fight off any relapses on it's own, without the help of antibiotics. By continuing aggressive spine care, excercise, strength training, & a positive attitude, I feel sure I'll maintain the right balance to be ready in case of another attack. I'm still working on maintaining a healthy diet, though I've eliminated many immune system polluting substances I was putting into my body. Old eating habits & food addictions are the hardest to overcome but that, too, has a balance.
The more I talk about what happened to me, the more people will become aware of the "great imitator". Although it's been a difficult trip, I've gained so much from the fight. I now have hundreds of new friends who are kindrid spirits with me facing the same debilitating challenges. Each night, we all meet online to share support, medical information, & activist activities.
Like I said, the war may not be over, but my battle is won. I have countless comrades who will stand with me in the fight to the end: the fight to reveal the truth about Lyme disease, the courage to contradict the medical bureaucracy with facts we already know, and the ultimate goal to reveal the concealed secret of the hushed truth about Lyme Disease.
We Are Kindrid Spirits.
I Dedicate this Chair, 'Domestic Dispute', to all the Lyme Literate M.D.s!
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Thank you Debby. I'm certainly going to try the natural approach from here on out. Thanks for the encouragement.
Hi donotfear-Thanks for sharing your journey with lymes disease with us. I don't know a whole lot about it but I lost a guy friend to it. He couldn't handle all the symptoms and sadly threw himself under a moving train. I knew then that this disease must be AWFUL which I did not really know at the time. I am so glad you are getting back to normal. I absolutely love your pictures of yourself. You look really healthy. YAE for you survivor and keep spreading your knowledge and hope. Blessings:)
This is an amazing tale donotfear, and although I have not yet read the previous chapters (only finding this one through 'feed'), I am curious to read more, not least of which because I have cats and frequently remove ticks from them, plus I experience many of the symptoms you list here including: joint/muscle pain, stiffness, letter reversal, constant exhaustion and even knee problems that an X-ray also showed no problem with. I am not even sure if we have Lyme disease here in the Channel Islands, or even in the UK, but I sure want to check it out and see if we do after reading this.
Thanks, an excellent hub.
PS. Found out Lyme disease is in the UK, therefore a very real possibility it has found its way to the Channel Islands too. I shall ask my Doctor about this on Wednesday. I know he will probably think I am some kind of self-diagnosing hypochondriac, but even he has to acknowledge there is a whole load of coincidences here if not. I even suffer from depression, anxiety attacks and fibromyalgia symptoms. A bit scary really, just hope it is coincidence only!
Minnetonka: Thank you for commenting. Yes, we are all true survivors!! Sadly, some of those who get the disease come to a point where they can no longer handle the symptoms, especially if they don't treat it right away. Thankfully, I got right on top of the infection. I can't believe I've been treating for almost 4 months now!! I'm so sad about your friend....there have been others who have met the same fate because of lack of understanding & ignorance on behalf of the major medical community. God bless you for reading & help spread the word.
Mistyhorizon: I'm so glad you read this article. Please read my other articles preceding this. It's very important that you be seen by a Lyme Literate MD as soon as possible. Lyme disease is everywhere, ticks know no boudaries. It is rampant in all countries, but ignored & concealed by medical bureaucracy. They are in denial. You, my friend, are on the right track. Do not give up...it sounds like you have it. You MUST see a doc who knows how to treat & test for it. Your doc is going to tell you it doesn't exist there. That's not true. He just doesn't know. It's not that the docs are lying, they are just not informed. Let me know how it goes!!!
Great news, I'm glad to hear that you're on the home stretch. I read all the things you can do, heck you've got this old guy beat in many areas! God Bless 50
Thanks donotfear, I shall let you know how I get on.
50 Caliber: Thanks! I just can't give up nor can I stop talking about it. Call it OCD of the tick borne disease.
Traumatic Stress Syndrome is a valid diagnosis for the disease that the doctors who do not understand LD give to patients seeking help. Their ignorance is no excuse for their responses to even young people who are suffering. Thanks for highlighting this insidious disease and providing good information for people seeking help.
When my son contracted it years ago there was very little information available. The doc that finally diagnosed him at stage 4 LD glibly thanked me for providing him with info (a notebook of info) that helped him pass his boards that year. Anytime that moment comes to mind I still "feel" it. Grrrrr. In the process, one of the many, many docs he was seeing at the time sat him down, called him by name, and explained to this once healthy 17 year old that all of the tests showed no problem and sometimes we just have to learn to "live" with pain--the problem was, our son was dying.
It was a long road to regain health after the diagnosis was finally made. We sought both traditional and non-traditional methods of treatment. We were already scared, but we continued to look to God to provide the needed help and today our son is doing well, although he still needs to be careful to rest right and eat well--not a bad thing at all.
So much more to our son's story...God taught us more about this fallen world, trusting His Word and Himself, more about ourselves and our limited understanding and weak faith...God might have seen fit to take our son and that would have ultimately been okay because we knew he was secure in the Lord Jesus according to God's Word--we knew we would see him again, but we continued to pray and fight for our son's physical life because we were his parents and the gift of life is precious, and there is more to this too...but we had to trust God with the outcome of the battle for his life...God always knows best. The spiritual side of our son's story leaves some people with serious questions about God, life, and eternity, that cannot be addressed in a comments section, I just didn't want to miss pointing out that there is a spiritual battle going on in the midst of our physical battles.
Thanks again for encouraging people in need of help!
RTalloni: Abousolutely beautiful! Your story of your son's battle is a testimony of Faith. I hope you've written a hub about it. Not only did you face the possibility of losing your son, you also had to fight the medical bureaucracy ignorance about this illness. You are right when you say it's a spiritual battle inside, as well. I know for a fact that my illness is connected to incidents of the past year...not as punishment for some hidden sin...but for the lowering of my immune system by allowing negative pollution into my life & body. Because of this, my body could not fight on it's own. Thank you for a lovely comment....I'm amazed & astounded.
That is the most wonderful news I read for a long time. Congratulation. You can be so proud of yourself. Thank you for updating.
hello: Thank you for following my progress....I appreciate your encouragement.
Wow! this is an amazing fight for survival! COngratulations! Is it true that lyme disease was created by the government? I heard that from "Conspiracy Theory" on Tru TV.
guthix: Thank you for your congrats! True that Lyme is caused by government? Not necessarily...it's been around a long time, in Europe as well. It actually did exist, though the bacteria changes all the time. It was taken and experimented with on Plum Island, thus causing the widespread devastation.
Hello, DNF - I've been out of touch for a while but thinking of you. I'm SOOOO sorry for what you've had to face, but also so glad you've made it past the worst of this disease. God bless you for all your efforts to understand this anomoly, and also to share what you've learned with the HP readers. I KNOW someone will be using your experience to their advantage at some point down the road. Let's just give thanks and praise for the courage and strength and intelligence and persistence God has given you to deal with all of this. You ROCK, lady!
embee77: Great to hear from you again! And thank you for the encouragement. My articles have make the rounds of the Lyme community. I pray someone will be helped and encouraged by my story. God bless!
I came back to see if you had written any more about your battle against this dreadful disease and I am so glad that I did.
I was overjoyed to read this account of your victory over this often-misdiagnosed disease. I am so happy that you triumphed not only over the disease but also against the system that all to often fails to acknowledge the diseases existence in so many people’s lives.
Keep up the good work and your fight against the ignorance that surrounds Lyme, The video that you have produces is more than excellent, I have seen many a professional video that was not half as good as yours.
You have done a wonderful job producing this series of hubs and when I think of all that was happening to you at the time because of this dreadful disease the quality of these hubs is nothing short of miraculous. You are a remarkable woman who has shown tremendous courage and determination in the face of great adversity, A great testimony and a great outcome.
I have voted this up and given it an awesome :)
maggs224: Thank you so much for your gratitude and appreciation. I will never give up the fight nor will I stop encouraging other kindrid spirits who suffer. May you be blessed, always!
I will be spreading the word through my Facebook. Spreading the word and eduacating people is the only way to get things changed.
Janise, absolutely. I refuse to give up and will continue the fight until the whole truth is known.
I'm glad to read that your health is getting back to semi normal. I hope that you continue to feel better.
ediggity, thank you.
Hello there! I've been struggling with Lyme for years. I had never had the characteristic bulls eye rash, so I was repeatedly misdiagnosed. I understand why my doctors never jumped to that confusion. I never mentioned ticks because I simply would never had thought Lyme disease. I had no idea the symptoms would last for years, no idea the symptoms were so common.
Anyways, my poor education out of the way, I had terrible joint pain as well. At one point I was put on muscle relaxers, and all the joint pain went away. It might be worth looking into.
Aria, few people get the bulls eye rash. I never had it, just a red bump on my arm. I think you need to get to a doctor who knows about Lyme disease. Please go to the doctor referral link at http://www.lymediseaseassociation.org/index.php?op
My doc took blood to see if I have Lymes this morning. Bumps on my scalp, a6 day migraine, no energy, no appetite, backache and low grade fever. Starting antibiotics today. I will heed your advise about probiotics. I pray for your continued and complete recovery. Thank you for posting your chapters. They are beacons on an otherwise dark and scary road.
Ellie: I'm sorry you feel so sick, I know how it is! Make sure you do plenty of research on your illness. It's important to note that the tests for Lyme are over 50% inaccurate. You can't rely on the test for a diagnosis and it's imperative you see a health care professional who is updated on the facts from the International Lyme and Associated Diseases Society (ILADS). http://www.ilads.org/
Hello donotfear! I tried the doctor referral link that you suggested, but it is "temporarily out of order". Do you have any other suggestions of how I might locate a LLMD. Thank you so very much!!
abbygirl: Yes, go to Lymenet.org and register as a user. Then go to the "seeking a doctor" section in the Flash Discussion area (forums).
hello donotfear thank-you for your story I am sure you have helped so may people like me who have lyme Ive had it for about 9 months now again--that same routine of getting the 4 weeks of abx and then relapsing
then taking another 4 wks abx still sick and very fatigued can do nothing given another 2 wks of abx from my reg doc but I am not gonna take it, i dont think it will help
have found an llmd here in ct and I have to waitt a month hope I can hold out as you have said the mountain is going to erupt and all us raging lymies are going to do something good luck to all you great people god bless
Ronnie baby: thank you so much for your kind comment. We are still fighting the good fight of faith. You aren't alone. Keep your appointment and go with the LLMD for sure. You will be out of the woods...........you won't always feel so bad, I promise. Take care of yourself!
I tested at the highest level of the equivocal range for Rocky Mountain Spotted Fever 8 months ago and have had many of the symptoms/problems of which you write about. Would a lyme literate Dr. be able to help me, as well? If so, do you know of any in or close by Arkansas? I only received 6 days of Doxy (I'm possibly allergic to it). Is it possible that I tested high on the RMSF titer, but really have Lyme Disease? Thanks for any and all help.
It is possible that you have Lyme disease. In fact, it's very probable. Everyone in AR is told they have RMSF and the docs tell them there is no Lyme in AR, which couldn't be further from the truth. It's very likely you contracted both (since you had a positive RMSF test).
The bacteria in AR that causes Lyme (borrelia) is a slightly different shape than the the original Lyme from the Northeast, but still the same bug. It's called Master's disease in AR but we all know it's Lyme.
If you were only given 6 days of doxy, there is no way it would eradicate it. There is a LLMD close by, within about 4 hours from where you live. I cannot give out the name. Please go to the Lyme Disease Doctor referral link, follow the directions and register, then you can do a search to find the doc closest to you. I'll add the link below. You need to see a qualified doc asap.
Your story was fascinating and very educational. Thank you so much for putting effort into this site as it puts out the awareness of this disease. A question......were you only on doxycyline?
stoney: Thank you for reading my story. I was on Doxycycline the whole 4.5 months. Flagyl was added to the protocol so I would be 4 days on Doxy and 3 days on Flagyl. The flagyl dose was increased slowly so no herxing would take place. In addition, I had to take Diflucan to control the yeast plus Probiotics. I'm glad it's over. Only reminder left is chronic tendonitis that has traveled into the knuckles of my hands.
Debby Bruck Level 7 Commenter 19 months ago
Dear DoNotFear ~ This is the first time reading your story and I see its been a long journey with 4 other Hubpages. Glad to hear that you have gotten help and there is much improvement.
When bitten by the tick, it can feel like the disease takes over your life and your body. I have not ready your previous posts, but would suggest to look into homeopathic care from a professional. There is one specific remedy typically used to treat Lymes disease, however, only a complete consultation can determine the best match for you to cover your unique symptoms of fatigue, twitching, word/letter reversals, stiffness and joint/muscle aches and pains. Widhing you a complete healing in mind, body and spirit. Debby
PS that video was wonderful. Loved the music