Wednesday, March 11, 2015

The Short Version

I've been hiding something and have been wanting to share something with y'all.
It's pretty personal and not related to DIY or our house, or the mountain cottage, but I hope you'll read this post all the way to the end anyway.
I feel compelled to share this with you in hopes that it could save you or a loved one tremendous pain and suffering. 



Don't worry about Mr. DIY and I, our marriage is still going strong (it will be 28 years in May). Our girls are doing great, as well.

I know it's something I have to share because it could save lives. I'm not being dramatic here and no, I don't have cancer.


I promise, I will try to give you the short version!

Ok, here goes.


I am being treated for chronic Lyme disease and have been pretty sick.

Like me a couple of months ago, you might think it's not a big deal and that Lyme can be cured by a couple of weeks of antibiotics. That's not necessarily true.
It might not be a big deal if you know you've been bitten and you have a doctor that understands that you need antibiotics, kind of like if you cut your foot outside on a rusty nail and needed a tetanus shot because you haven't had one in awhile. I'll save the politics of lyme disease for another time, but suffice it to say, the CDC guidelines, which most doctors follow, are wrong and a lot of what you think you know about Lyme disease is probably wrong.
If you have just been bitten, email me directly immediately.

Spring is coming up pretty quick and although you can get Lyme any time of year, it's prime season for Lyme disease because ticks are emerging. 

You know what they say about an ounce of prevention....

First off, Lyme disease is spread mostly by ticks, but can be spread by mosquitoes, spiders and biting flies. In the Spring, ticks emerge as nymphs that carry the bacteria borrelia bergdorferi (borrelia is Lyme disease -ticks carry other co-infections- bartonella, babesia, mycoplasma, rocky mountain spotted fever, and more). Tick nymphs are only the size of a poppy seed and the bites are painless, so you might not know you've been bitten. Check your kids and pets thoroughly when they come in from being outside!
Ticks love to hang out on long grass or vegetation in or on the edge of woods or under leaf litter or in wood piles, just waiting to hitch a ride on a new host.

One thing I will be doing soon is treating my clothing (ahead of time) with permethrin.  This is a treatment and clothing needs to dry thoroughly before treated clothes can be put on. Do not spray permethrin directly on yourself or you clothing while you have it on. I have been one who avoids dangerous chemicals for several years, but this is one area that I make an exception due to the severity of the alternative You can see more about treating your clothing HERE.

But Lyme disease isn't in my area
Wrong, wrong, wrong!
Lyme is  in every state in the US, is in Canada and has been found in every continent, except Antarctica.

You only get Lyme if you develop a bulls eye rash.
Wrong again!
I was bitten by a tick and didn't get the bulls eye rash.
Less than half of those who develop Lyme disease develop the bulls eye rash. You can develop an ordinary red area around the bite, which is what always happens to me any time something bites me.

So, what are the symptoms?
Early Lyme - early on you can develop flu-like symptoms and you might get the bulls eye rash. Bell's Palsy is also an early Lyme symptom. If you know you've been bitten and have the rash, demand that you get antibiotics from your doctor and don't wait for the test to come back before you start taking them. CDC says doxycycline for 21 days, but I would personally ask for more like 6 or 8 weeks. (Just my opinion as I am not a doctor and can't recommend you do the same)
(Children under a certain age can't have doxycycline, but amoxicillin can be given to them.) 

 I personally take probiotics WHENEVER I take antibiotics, in order to keep yeast from overgrowing in my body. 

If you find an attached tick, remove it carefully (go HERE for instructions) and save the tick to be tested!

Later Lyme-
Symptoms can include: headache, stiff neck, light or sound sensitivity, vision problems, cognitive impairment, exercise intolerance, muscle pain, sleep disturbance, depression, anxiety or mood swings, arthritis, abdominal pain, nausea, diarrhea, chest pain, palpitations, shortness of breath, tingling, numbness, burning or shooting pains and debilitating fatigue. 
You can go HERE to see more info on Lyme

Some of these symptoms many times are explained away by you or your doctor as getting older, which is what I did. I only remember being bitten by a tick 15 years ago (thought nothing of it because I didn't get the bulls eye rash) and had many of these symptoms develop over the decade after being bitten. 

The symptoms that got my attention were tingling and numbness in my feet, feeling off balance, having reactive hypoglycemia and my fatigue was getting worse, so I brought it up with my doctor. After reading a lot on the internet on reputable websites, I told him it was either Multiple Sclerosis or I had Lyme (many who have been diagnosed with MS, ALS or Lupus have found out they actually have Lyme and got better after being treated for Lyme).  My doctor didn't think I had MS, but tested me for Lyme and it came back positive. The test also showed it was a recent infection, so I'm guessing I had been reinfected since I had many of these symptoms before the Fall. 

How bad did I get? 
I couldn't think, do simple math,  had difficulty formulating sentences, I couldn't drive. I had problems with my vision, with balance, my short term memory was affected and I was so tired, I didn't have enough energy to get out of bed. December was bad.




Did it get better on it's own?
No
Am I back to feeling great?
Not yet
Am I out of bed?
More each day

I have good days and bad days; but I'm getting better.
I've made good progress in the past few months and had more energy in the past few weeks. It hasn't been easy, but I can drive and do an errand on a good day.



That's all I'll share for today.
Instead of sharing what I'm doing to get better on DIY Design Fanatic (because it's complicated and not DIY related) , I  will be sharing more on a new blog, called My Healing Lyme Journey, but felt it necessary to sound the alarm to all of you with Spring coming up.

I've given you but a smackerel of information on Lyme disease. 
Please protect yourself, your kids and your grand kids. 
You can learn more about Lyme disease HERE or follow along on my new blog.

Please feel free to email me if you or a loved one has been bitten recently with a tick.


I've never asked this before, but would you PLEASE share this post on your Facebook page, on Twitter, Instagram and Pinterest page? Also, ask your friends, family and followers to do the same. I feel so strongly to get the word out!


Pam

You can read Part 2... More Details (The Longer Version)
 by clicking HERE

ps. if you see any typos, please leave me a (nice) comment pointing them out- it's just another symptom that I hope will be resolved when I get better.  Thanks! 









18 comments:

  1. Oh my goodness, Pam! I would never have known any of that!! Glad you are feeling better and so thankful for all that info. Wondering if doctors would just run a test to make sure.

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    1. My doctor in Hendersonville did a lab test for Lyme (borrelia) and it came back positive, but for only 2 out of 5 bands. According to the CDC, one must test positive for 5 bands to actually have Lyme. The lyme spirochete hides in the central nervous system, heart, or joints and is difficult to test in blood work. There is another lab that specializes in lyme, whose test is more sensitive, but that lab isn't covered by insurance and the testing for lyme and co-infections costs about $800. I went out to see a doctor in Eastern NC who had lyme. I'll tell more on my other blog soon. But, please be careful out in the woods, especially with your kids!

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  2. Thanks for sharing! I will share this as well!

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  3. I'm so sorry to hear this. I never knew Lyme disease was so serious until Yolanda on Real Housewives of Beverly Hills talked about her struggle with it. Kinda funny that I actually learned something from frivolous reality tv! Sending lots of prayers your way. Hope you're better soon.

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    1. I'm glad Yolanda is speaking out about it. I hope she gets better. Thanks your the prayers and well wishes.

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  4. I'm so sorry to hear this. I am following a young lady on Youtube (Erica Fae) and she's been going through treatment. She recently did a video and I was shocked on how much it affected her. She's been trying to get the word out about the disease and the lack of support from the CDC, which makes it very expensive to pay for the treatments and medicine. I wish you the best of health.

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    1. Thanks Lakitia! I will talk more about what I've done to get better on my other blog soon. I am spending less than $300 a month (plus a few extra supplements) for the protocol I'm on that was developed by a doctor. There are several different protocols that people are getting well on- everyone is different. I was so upset when I found out I had lyme because I thought we'd have to use our life's savings in order for me to get better. 8 months of iv antibiotics costs about $60,000 and I know that many have spent $150,000 and more going the full antibiotic route.

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  5. I've been missing your posts & wondering if all was well. Now I understand. I know very little about Lyme disease but you have taught me a lot. I was surprised to see now many of the symptoms I've experienced for 24 years. I saw a neurologist when I started walking with an obvious lean to the left & falling/tripping on anything. The neurologist asked if I was afraid of getting old. I'll share your blog on FB and Pinterest and I'm looking forward to hearing good news about this terrible disease.

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  6. Pam, I am so sorry to hear that you've been experiencing all of this. What an ordeal! I will share this on FB tomorrow. I am going to click over to see how to treat clothing because we are outdoors a lot. A few years ago, I found a tick on me but I don't think it bit me, but who knows? I do hope that you continue to improve.

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  7. Oh Pam I'm sorry this happened to you. I hope you will recover satisfactorily soon. I know it's important to get treatment quickly. You provided good information.

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  8. God bless. I will be sending angels!

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  9. So sorry about the Lyme. I was tested 4 times and I knew I had MS. I just felt in my gut. 25 years later I went to a new neurologist in NY. He tested me again and I asked why. He said it's the best test there is and wanted to make sure. It was negative.

    My friend has stage 5 Lyme. I know j ow hard all this is and I'll say a prayer. I hope so much for improvement for you. Try to also eat as clean as you can. It may sound silly but it makes a difference with these illnesses

    Cindy

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  10. Pam,
    I pray that your treatment plan provides the relief you so badly need. I have suffered from something totally different for many years with many of the same symptoms. The Drs. had no clue and me it was in my head for several years. I finally tested positive for a illness 4 years later. I still manage things differently but I call it a new normal. The changes I have made and the battles I have gone through have given me a different life. I now just do my best everyday the best I can for the day. I hope your Lyme Journey has not taken all of your joy away.
    Thank you for sharing your experience,
    Karen Marie Kedzuch
    I will be sharing.

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  11. Oh Pam, what a terrible, terrible process. For more than ten years? I cannot imagine going through this. My Mother had Lyme and it lingered for years and would come and go (or the symptoms would), but never anything as bad as this. I do know a man in his 50's, in Boston, who has had severe problems for many, many years. All from Lyme. Wow. Well, I have to say, I don't check very carefully but will start. It's quite a story. I went to your new blog and will continue to check in. Your family must have suffered along with you…So, are you on antibiotics now? Oh, maybe I have to wait until the next installment. Thinking of you and wishing you a fast, and full, recovery.

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  12. Oh Pam.. I am so terribly sorry that you are going through this....I know many people that say they have Lyme Disease and i guess each individual has different symptoms....my neighbor's reaction was his intolerance to eating beef, pork, lamb, etc...all from being bitten by a tick...it is such a huge problem as the deer population is growing tremendously....especially here...I hope you begin to feel better soon...

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  13. Pam I have heard how bad this can be. Seems some people have horrible on going symptoms and some not so much. I hope you continue to fee better each day. Thanks for sharing this info!

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  14. Thank you for posting this, I read it the other day but just found a deer tick on my child that has been there since Sunday at least and I pulled this back up to reference...waiting for the Dr to call back now. Prayers for you...

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