A few weeks ago I signed up to run/walk a half marathon in early March. I’m committed to doing the “race,” even if I’m the slowest competitor. Given how out of shape I am, I’m afraid that I may be greeted by people in white coats for a whole different type of commitment! I’m hoping, however, that the race will be an important step on my way to closure of a phase in my life, the time when I can say goodbye to Lyme disease.
Nine years ago, my heath took a nose dive. I had been an extremely active woman, running nine miles three days a week, lifting weights, hiking, and so forth. The plunge began following a fourteen-mile hike through the Ozarks in August of 2002. (I was then just a visitor in what is now my home state.) I spotted what I thought were baby spiders when I sat down for lunch; hours later I discovered hundreds of tiny ticks attached to my skin under my socks and shorts line. I had sprayed for insects that morning, but I did so after I got dressed. The ticks crawled to the first spray-free space of skin, and around every tick was a sign of infection. It was like something out of a horror movie.
Here I’ll short cut the story to say that I immediately knew I needed treatment and sought it as flu-like symptoms began but was unfortunate enough to be referred to an out-of-town walk-in clinic with an idiot doctor who didn’t know the difference between a tick and a chigger. I contacted my home doctor who thought we could wait a week for treatment. Sadly, he was wrong. Within a few weeks of finishing a short course of antibiotics, I started having trouble staying awake. I also had pain and lack of focus, but I didn’t connect the symptoms, and neither did my doctor. I was training for a half marathon, and I beat myself up when I could run less and less each month instead of more and more. Fast forward a couple of years. I’d taken a year’s leave of absence from work and moved to another state and then back to whence I’d come, where both I and my doctor were stumped by my increasingly confusing symptoms, including sleeping nineteen hours a day, signs of early onset Alzheimer’s, and–although I never mentioned this to my doctor–pain. By then too I’d met the man who is now Mr. Homesteader, and he pushed me to keep searching for a solution.
How we figured out that I had Lyme or its close cousin Master’s disease is yet another story in and of itself, one that perhaps belongs on another blog (one about Lyme, which this one is not). In the end, I was fortunate to get connected with Dr. Edwin Masters, who treated me until his death two years ago. Since then, my new primary care doctor in my Ozark community, where I moved five and a half years ago, has picked up where Dr. Masters left off. I was almost dead by the time Dr. Masters started treating me, the first weekend in March in 2005. I’ve been on high doses of antibiotics almost continuously since then, determined to beat the disease. I genuinely hope that my war is ending. The half-marathon I’m doing will be on the sixth anniversary of meeting Dr. Masters and starting my much-too-long climb out of the pit that is neurological Lyme. Run or walk, I don’t care, as long as I reach that finish line.
Now, dear readers, I know that many of you have overcome health adversity and/or taken on physical challenges like running races. Do you have any words of wisdom to carry me through the next five weeks? One tip I have for you is that I keep myself walking (and occasionally jogging, when I feel up to it) by listening to books on tape.
P.S. (from 10 p.m.): Today my “track” (the cleared area of the property) had dried up enough that I felt comfortable running again, without fear of breaking an ankle in the mud. I alternated running and walking for 15 laps–about 3 or 4 miles. I’ve got to get my track measured! It felt pretty good. Maybe I’m really going to pull this off!
P.P.S. Today I felt miserable, with the kind of bone tiredness and aching that I associate with a mild herx reaction. Still, I knew if I just got off my bohuncus and moved, I’d feel better. I pulled off 25 laps. I alternated running and walking the first 20 and then walked the last 5 to cool down. I also finished “reading” The Defector by Daniel Silva via my Ipod. I’m more a “cozy” kind of mystery/suspense reader, so the bald violence in this book got to me a bit. I’d still recommend it, with the caution about the torture and executions.
P.P.S. Sunday, 2/6/2011–got in 30 laps, 20 doing my half run/half walk and the rest walking. I was slow, but I was determined to make the mileage, because we’ve got more icy and snowy weather on the way, and if it arrives as predicted it will reduce my “track” to a slippery mess for the rest of the week. Thanks for all of the words of encouragement this week. It really has meant more than I can say.
Here is an article I copy/pasted from Natural News
that might help. Good Luck to you.
-Leslie Lawson
Get Rid of What Makes Lyme Disease Tick
by Paul Fassa, citizen journalist
See all articles by this author
Email this author
(NaturalNews) The deceptive pleomorphic Bb bacteria of Lyme Disease can be rooted out by Cat’s Claw. Pleomorphism refers to a microbe’s changing form according to the condition of its tissue or serum terrain. Cat’s Claw is an herb originally from Peru. And there is a chemotype (slight chemical variation) of the original Cat’s Claw herb known as Samento that is even more effective than Cat’s Claw.
The Insidious Bb Bacteria
The Bb or Borrelia burgdorferi, an anaerobic bacterium, is the major culprit that lodges in a Lyme Disease victim’s tissues, sometimes even in brain tissue. One major reason for incorrect diagnosis for Lyme Disease (LD) is the nature of the Bb bacteria.
Bb’s most notorious form is the spirochete, a spiral shaped microbe. But because it is pleomorphic, it appears in different forms. It can assume spirochete, spheroplast or L shaped, and cyst forms. Besides changing form, leading to mistaken identity and mis-diagnosis, it can lodge deep within tissues and remain hidden beyond the reach of antibiotics, the most commonly prescribed medicine for LD.
Out of frustration, some doctors recommend psychotropics or psychiatry after a month of antibiotics without success because they are convinced if the antibiotics didn’t work, there is no Bb bacteria present. So it must be in the victim’s head; it’s just mental!
Add this to the fact that LD is capable of mimicking well over 300 diseases, often leading physicians and healers down the wrong path of treatment. A few of the diseases LD mimics are Parkinson’s disease, rheumatoid arthritis, multiple sclerosis, chronic fatigue syndrome, multiple chemical sensitivity syndrome, fibromyalgia, and other similar conditions. Even anxiety, depression, or Alzheimer’s comes to mind upon examination of LD victims.
The Samento Version of Cat’s Claw
Several successful clinical trials have been done on Lyme Disease patients throughout the world using Cat’s Claw with positive results. But a recent test using the Samento chemotype variation has had the best results. Samento is Cat’s Claw without chemical antagonists called tetracyclicoxindole alkaloids (TOAs). So basically Samento is TOA free Cat’s Claw. This is a natural plant chemotype, and it’s not lab produced.
TOAs affect the central nervous system, inhibiting the positive effect of the pentacyclic oxindole alkaloids (POAs), which boost immunity with powerful immune system modulating properties. TOAs can cause a 30% reduction in immune system modulating properties that the POAs provide.
Samento extracts can be taken as a relatively inexpensive supplement, just like its parent Cat’s Claw, without side effects. This is good since this supplement could be in a long term relationship with an LD victim. Though Samento quickly relieves all symptoms, it may not be an ultimate cure all for everyone, although in one trial with 28 advanced LD patients, 85% were tested Bb free after the trial.
The option of long term expensive antibiotics is a dead end approach. It leads to intestinal flora destruction and possibly candidiasis with other side effects. As a matter of fact, in the same trial where 85% tested Bb free using Samento, the control group was given antibiotics. Some in the control group got worse, while most showed no improvement whatsoever.
Summary
If one is using prescription drugs, it would be wise to consult with a knowledgeable physician or healer before using Samento or even basic Cat’s Claw as some pharmaceuticals mix poorly with these herbs.
It seems that it would be wise to pursue a course of Samento supplementation if anything remotely resembling LD is apparent. Samento’s or Cat’s Claw’s protocol includes ingesting enzymes and food based supplements as well as natural detox agents for maximum results.
Sources for more information include:
Health News: Samento (Cat’s Claw) is Producing Good Outcomes for Those with Lyme Disease http://www.healthynewage.com/intrai…
Holistic Health Newsletter – Arming Yourself Naturally Against Lyme Disease and Cancer http://www.healthynewage.com/herbal…
Natural News article: Look Into Lyme Disease Part I http://www.naturalnews.com/028998_l…
NCI Definition of Pleomorhism http://www.cancer.gov/dictionary/?C…
About the author
Paul Fassa has managed to survive the Standard American Diet (SAD) and his youthful folly by deprogramming gradually from mainstream health ideology and studying holistic health matters informally with his wife while incorporating them into his lifestyle as a vegetarian.
He also practices Chi-Lel Chi Gong, and he is trained as a polarity therapy practitioner. He is dedicated to warning others about the current corruption of food and medicine and guiding others toward a better direction for health. You can visit his blog at http://healthmaven.blogspot.com
Thank you, Leslie! I can’t take cat’s claw due to other issues but know others may appreciate the information. The information you included about Lyme with it is great–explaining for other readers why a bacterial infection can be so hard to kill. Anyway, I hope I’m at the end of my road with it. As a matter of fact, I’m heading out for my walk (run?) right now. 🙂
I understand how you’re feeling, Homesteader. I too have battled a chronic illness and have yet to fully recover, 16 years after surgery.
I had Cushing’s disease, which is an overproduction of cortisone caused by a tumor of the pituitary gland. It was years before it was diagnosed, during which my health and happiness went downhill. The frustrations of my MD and GYN, not to mention myself, led me to specialists at the Mayo Clinic who removed the tumor and helped me to begin to recover.
I was a high school athlete, played all kinds of sports in college, and was an avid outdoorswoman. I am back to doing those things, but not with the intensity I once did…and I will admit some of that is now due to my age!
A horrendous, deadly disease took my twenties, and I will never get that back. Battling to get my health back has given me a lot of satisfaction, difficult though it’s been.
Keep fighting it. While things will never be as they once were, you are now wiser and stronger than you dreamed possible. I know I am.
Good luck in the half-marathon! Know that we’re all cheering you on!
Oh, Regina, I’m so sorry you went through that. It sounds like you’ve had an amazing attitude to carry you to today. I appreciate the inspiration!
I wish you well, too. And attitude is half the battle!
Thank you, Regina!
I went through a couple of surgeries this time of year, three years ago, so the season has felt “medical” to me ever since. Every year I try to reclaim my winters…with poetry readings, with dinner parties, with yoga, with whatever comes to hand. Like your Ozark Mountain “track”! I love that. Your courage muscle is in fine shape…the rest will follow…
“Courage muscle”: how wonderful, Cindy! I’ll have to make that part of my mantra.
Wow, what a story. When you mentioned the ticks I immediately thought of Lyme disease, being a hiker myself. What a struggle you have had with it. You seem to have persevered very well though. I can tell by reading your blog for the past year. You really are a role model to many women. When I was running I found the book “Running Start to Finish’ by John Stanton a very valuable resource. Good luck with the training and marathon. Linda
Thanks for the vote of confidence, Linda! I started the blog in part to write again, something Lyme had left me unable to do. I could barely put together a sentence with the words in the right order some days. Now please don’t have me running a marathon! It’s just a half!
As for the ticks, be careful.
Thank you so much for sharing your story. I was diagnosed with Lyme disease last June, after a few years of declining health, and I’ve been on high doses of three antibiotics since. It’s been a hard road and the medications have made me horribly sick. At times, like right now, I think I’m doing better, then it all falls apart again. I admire you for your commitment to exercise; that’s the hardest thing for me. I have too much joint pain and too much fatigue to manage it. Just getting through the work week saps my energy almost completely. I’ve been reluctant to write about this on my blog because, like you, it seems like a topic for another blog. But reading your story here reminds me how important it is to share such an important thing about ourselves, if we truly want to be understood. Keep up your hard work, and I wish you a year of steadily improving health.
Eleanor
Eleanor, I’m so sorry to hear about your struggle with Lyme. Judging by your coherence on your blog, I’m hoping you caught it relatively early, before it impacted your brain too much. (When I was at my worst, I missed my brain most.) Still, I know from friends who caught it at different stages how awful it can be at every point.
The latest Burrascano protocol calls for physical therapy during treatment, with an emphasis on weights and stability first and then only later building into cardio. He has a form on the ILADS site for your doctor to fill out for a prescription for physical therapy. Based on my experience and what I’ve read, moving helps clear the herx reaction faster. All that said, I know how hard it is to put even one foot in front of the other.
You’ll be in my thoughts, Eleanor.
I so admire you commitment. I’ve struggled healthwise over the past 5 years with two frozen shoulders, breast cancer and other issues related to both. The best thing for me is to watch my food intake and really journal about how I’m feeling after eating different things and to enlist friends to help motivate me to keep exercising. I’ll be thinking of you.
Tammy, thank you for sharing your story! I remember your post about journaling. Inspiration from friends always helps! Are your frozen shoulders a consequence of the breast cancer? I hope that you continue to be cancer free and can find a way to get your shoulders moving again.
Oddly one of my shoulders froze before my diagnosis and one after so I believe it is unrelated. It’s just frustrating and very painful but I’m improving.
Tammy, I’m so glad you’re getting better. As I said to Leigh, I’ve never had to deal with that. I do know how frustrating chronic pain is, though.
When I hear of a cancer diagnosis, I try to remember my paternal grandmother, who lost both breasts to cancer and then made it past 100 years old.
Im a little behind in reading these follow up posts. I also had frozen shoulder and struggled with it for 3 years. I saw chiropractors frequently during this period – but the fixes were only temporary. My shoulder healed after I began to practice yoga regularly. I’ve had full mobility of my shoulder for over 2 years now. It has never felt better, quite frankly.
Wow, Linda, that’s good news about the yoga. Tammy, are you reading?
I will try to go to yoga tomorrow. Amazing and I shouldn’t be surprised.
I hope it helps.
I’ve never tried it beyond using a tape, but that was a VCR tape, and we no longer have a VCR. Maybe I should get one for the DVD.
Thank you for the PT information. I’m juggling so many appointments, while trying to keep up a 50+ hour work week, I’m hesitant to add another. Right now, I’m trying IV nutrient therapy to rebuild my immune system. I’ll at least work harder to build in an exercise component. Yes, terrible brain fog and fatigue were huge issues for me; I was sure for a while I’d lose my job, because I was just not tuned in most of the time. Thankfully, that has mostly passed. Thank you again for sharing your story. I wish you the best in preparing for your half marathon.
Eleanor
Eleanor, I understand about fearing for one’s job. Mine required my brain; long story short, I still use my brain but not in the same ways as before. With regard to PT, have you ever seen Tony Horton’s Power90 advertised on television? I’m not talking P90X or Insanity, which are both extreme. The original one had both cardio and weights, and you could do either very gently: http://www.beachbody.com/product/fitness_programs/power90.do I got mine with a free bonus of Power Half Hour: http://www.beachbody.com/product/fitness_programs/express/power_half_hour.do . At the time, I was in the pre-diagnosis stage and trying to get in better shape. I discovered as I started to recover, though, that the weight training and half-hour stretch were good for getting rid of that feeling like my muscles were stretched tight. It’s not like me to recommend an infomercial product, but I actually think it’s pretty good, and you can easily work at your own pace.
I’ll keep hoping for a full recovery for you!
[…] I learned that I’m not the only gardener dealing with Lyme disease. I mention this because we sometimes harbor illusions about each other, especially about those we […]
Thank you for this tip; I’ll definitely follow up. I’ve read the Burrascano protocol, which is what my doctor is following, and have been resistant to the idea of pushing myself on exercise. Hearing your story inspires me to give it a try. Thanks for your support, over the miles.
I hope it helps! I really hope it does, Eleanor.
Good grief, what a story. I have been fortunate with my health, but reading Tammy’s comment reminded me that I had frozen shoulder too. That was six solid months of intense pain that prescription painkillers couldn’t touch. That’s behind me now, but it does make me more empathetic to others, plus value my health including measures to safe guard it. Good discussion.
Leigh, how did you get your shoulders unfrozen? I’ve never had to deal with that, but it sounds awful.
[…] 6, I’ve been recovering and trying to get caught up on life. Unfortunately, I did have a Lyme relapse, but it was manageable–and a sign that it’s just not time to stop fighting. I also, […]
Hi
I wanted to know if you can suggest me any tips to fight this indescribable disease !
I had got this in July 2011 and January I was diagonised with Lyme , my IDD said it already damaged my nervous system , and she wanted us to do the IV but I was so not ready for intravenous one as I has 5 yr old twins with me and no help !
I no more could remember things, spelling simple words became hard , typing was like mountain hiking , eyes burned , hands and legs numb ,tingling all tym, all day fatigue but suddenly I had lesser of the symptoms but the memory problem never left me ! Since last week suddenly all my symptoms are back ??
Now I am new state and know none, lost my all hope , don’t know we’re to start ?
I can’t even sit or sleep , I am very overweight , knee hurts I can’t explain , it’s all tym swollen .
Is it ok to ask what did u do that you are better now ?
I don’t want my kids to go thru my sickness again.
Any tips is most appreciated
Cea, I’ve been where you are and am so sorry. I did the IV thing. After the chest catheter or port is installed and you get used to using it, you can do it at night. I really benefitted from it, but I also have benefitted from alternating Cefuroxime and Flagyl. You need to be treated as soon as possible to reduce further damage.
In the meantime, where have you moved? I may be able to identify resources for you in your area.
on July 27, 2015 at 1:52 pm | ReplyCea
Your comment is awaiting moderation.
Hi
I wanted to know if you can suggest me any tips to fight this indescribable disease !
I had got this in July 2011 and January I was diagonised with Lyme , my IDD said it already damaged my nervous system , and she wanted us to do the IV but I was so not ready for intravenous one as I has 5 yr old twins with me and no help !
I no more could remember things, spelling simple words became hard , typing was like mountain hiking , eyes burned , hands and legs numb ,tingling all tym, all day fatigue but suddenly I had lesser of the symptoms but the memory problem never left me ! Since last week suddenly all my symptoms are back ??
Now I am new state and know none, lost my all hope , don’t know we’re to start ?
I can’t even sit or sleep , I am very overweight , knee hurts I can’t explain , it’s all tym swollen .
Is it ok to ask what did u do that you are better now ?
I don’t want my kids to go thru my sickness again.
Any tips is most appreciated
It’s long, long fight, Cea, but it’s worth it. See my other reply. I’m sorry; I was out of town and off line. Please let me know where you are located, and I may be able to help you find resources. I know how scary this disease is.
I am in Charlotte , NC
Please do recommend someone who can really understand my problem
Than telling me Lyme can’t come back ,it’s acid reflex and its I. Your head .
I too am
Searching doctor here.
New research makes it really clear why Lyme can persist after extensive antibiotic treatment.
http://www.northeastern.edu/news/2015/06/researchers-discovery-may-explain-difficulty-in-treating-lyme-disease/
This new research suggests that not switching drugs in pulses but going off and on can help. I’m really intrigued by the Mitomycin-C and am seeking information on its side effects now.
The ILADS site has a physician referral service:
http://ilads.org/ilads_media/physician-referral/
If there is no Lyme-literate doctor near you, you may want to try Dr. Brian Fallon at Columbia. I have no idea what the cost would be, but you could try a GoFundMe account to cover costs:
http://www.columbia-lyme.org
Have you ever heard abt bee venom therapy ! I can’t afford the IV thing , especially mentally or financially ‘ Not that I need someone to help , just finding ways to help myself !
Thank You
>
I think that the latest news is that standard antibiotics may help you but just take a bit longer than IVs.
Bee venom is the modern snake oil!
Thanks you for helping me even when you don’t know me ! God willing I will be healed!
Thank You
>
And good medication!
Yes , I went to IDD and intravenous next week
Thank You
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There’s an old saying: When you’re walking through Hell, keep going. It is so apt for Lyme disease.
The most advanced country so blind to the deadliest disease ! I am So Much burden to my family.. I some days hate myself .. Wish I just died ! Sorry just vented .. My brain can’t find what is left and right .. 35 year old vegetable 😑 Bye sorry just feel no one understands me .. All around me think I am crazy lazy .. Blah blah
Thank You
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I know you’re not lazy. I’ve been there. I’m still there some days. I agree with you too: Lyme is one of the most impactful infectious diseases in this country, yet we devote more time to fighting over treatment than conducting real research.
Sorry for the vent out ‘ those of one those bad days ! Today we decided too for IV with rosafin . Also I just wanted to ask , did you have any side effects of prolonged antibiotics. Is there any way to avoid yeast infection. I live with my twins and hubby and hubby is the bread winner And he can’t take leave . Can I take care of myself if alone . Sorry had no choice but to ask you . I really can’t think of this treatment , looks so scary and on that no guarantee that this will heal me. Please if you can reply with advice please please do. I prayed that I will experience divine healing but I guess this chapter wants me to have In mylife . Thanks a lot for gearing me with little confidence
Thank You
>
The IV Rocephin helped me a lot. Be forewarned that it hurt like H*ll while I was doing it, but I came through with much more manageable symptoms. I did my IV at night, so that I could knock myself out through the worst of the herxing. If you have friends and family who can help some with the kids, ask.
I am fortunate to have avoided any yeast infections. I eliminated most sugar and processed flours and grains from my diet. I added pro-biotics in the form of yogurt and kefir, and I used pre-biotics in the form of whole foods.
Oh wow … I am new to Charlotte so no friends part, will try to get my mommy here somehow !! Wow so it is painful … Praying this is the last pains I bear .
Thank you soooooo much for responding.. God bless you
Thank You
>
Here the IDD doc only wants me to do IV with rocephin and didn’t give the other two which I had , I know all don’t get treated same way ! Just hoping I will herx less ! You were the only Inspiration that helped to decide for IV as whatever I read was so negative and I do know it’s just taking a chance to the path of healing! My hubby said lets at least try as last tym oral did t help.
Thank You
>
You will herx more with IV, but it’s worth it to blow past the worst of the other symptoms.
Oh so you took IV years ago and after that you were better ? Did Lyme relapse for u? Can you share your story of recovery, if time permits ?
Thank You
>
I’m sorry I missed this question. I did IV years ago, and I have spent more years on antibiotics. The IV got to me a manageable level with the Lyme; the antibiotics keep it from getting out of hand again.
Oh wow … This is 2nd day in IV and I only have more bowel movements and no herx😥 Concerned if it’s even working but now anyways I started .. You area strong warrior , thx for helping me .. Here with insurance I pay 1500 $ Idk if they will cover us anymore .. We didn’t get any LLMD here , can’t travel as hubby is bed ridden .. Hope all This will help me control it ..
Thank You
>
It usually takes a few days for herx to start with me. Remember that your insurance company cannot shut you off with the Affordable Care Act! Good luck!
Thanks you sooo much ..
I will look into the insurance thing !
Jesus bless us all ..
Yes, we can hope!
One last question , did you do lumbar puncture , here they want me to do That to confirm I have neuro Lyme.
Thank You Christy
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I did not, but I went through the IV part years ago. And my local doctor did require an MRI to rule out MS.