Friday, August 21, 2015

One year later…

I have had Lyme Disease for this last year. This was basically why I didn’t come back to write here. I had thought it was going to get better quickly but it did not. I want to let you know that and share some links that could be helpful in learning more and learning how it is recommended to treat Lyme Disease. (This would not usually be how your primary care provider would choose to treat you.)

I wrote the “first edition” of this post and included more details of my year with Lyme Disease. That is no longer in print. ;-) After I initially published it, I felt uncomfortable with putting that on my blog forever and leaving it there. Mostly because I felt like it was an unbalanced view of this last year. Not that it wasn't that bad but that there were always beautiful moments and details mixed into the terrible days. Some of you already read it, and that is fine, but I chose to take it down. This is an abbreviated revised edition to give you a small picture of what has been going on.

I had many symptoms that are not so uncommon, but I think we usually think of Lyme symptoms as minor inconveniences and quite temporary. That’s not always the case, and if you don’t get diagnosed early, they can last quite a while, with some people having it last years or a lifetime. For me, it was not a quick fix and life was very hard for several months and tapered to where I am today. I have had: air hunger, severe fatigue, heart palpitations, brain fog, rashes, severe neck stiffness and pain, jumping joint pain, headaches, cramps, twitches, slowed hair growth, word finding issues, vision changes and issues, and things that were probably helped along by the disease like low iron, lower blood pressure, higher heart rate...

I'm trying to balance this post, but part of it needs to be realizing that this can be life changing and you should deal with it right away if you suspect anything. From what you know about Lyme, it might not seem like a big deal, but that's usually because lists don't mean too much and it's one of the "invisible illnesses" that won't look too bad when your friend is in public.

I praise the Lord that he orchestrated things so that I was in the right places at the right time for diagnosis and treatment, and for help and encouragement. There were so many friends and family that helped along the way, checking in and bringing meals occasionally. I was with a wonderful ND/midwife who ran the Lyme test and trusted my opinions and intuition. She was willing to treat me by consulting with another Lyme MD since there was no time to be put on a waiting list for a local Lyme doctor. We needed to treat effectively as soon as possible because Peter could have contracted Lyme in utero. He does not appear to be affected at all and is a happy, healthy (almost) 9 month old.  I’m now with a Lyme ND on the coast and am doing really well.

I had commented a few times that God knew the husband and father our family would need. Our family did not necessarily suffer. My children felt spoiled with TV, fruit, take out, and still got to run around the house making a ruckus. Joel is an artist, and he made amazing food and really enjoyed cooking dinners. Since then, he’s actually made a comment that he misses being creative in the kitchen. He didn’t have to worry about me complaining about the mess in the kitchen, because I really didn’t care since I wasn’t able to help either. I knew he was carrying most of the house, family, and homestead on his own. This man already loved me in great sickness, and in health.

The homestead ended up being perfect for someone with Lyme and I’m really thankful for where we were in its development. The organic soy free eggs, grass fed beef, organic chicken and chicken stock, and the raw grass fed milk were all so helpful. 

God is Sovereign and cared for us in all the many details. I've seen some good come from all this, but even if all that was still a mystery, I would trust Him alone. 


I would encourage you to learn more about Lyme if you live in endemic areas. Your doctor won't always have it at the top of their list for some of the more elusive symptoms and they won't always be willing to treat you if you are further along. Each person's struggle is different too. You could look at different lists of symptoms, or read other Lymies' stories because most of us recall details of relate-able stories better than lists.

ILADS  - these people are the bomb! ILADS standards, research, and knowledge are what “Lyme Literate” Doctors look to.
Go to this site and look at all the info under About Lyme. http://www.ilads.org/lyme/about-lyme.php
ILADS 2014 guidelines: http://informahealthcare.com/doi/full/10.1586/14787210.2014.940900

Dr. Burrascano Treatment guidelines from ILADS: http://www.lymenet.org/BurrGuide200810.pdf
Treatment dosing: pg 19-20
Diagnosis checklist: pg 9-11
Treatment information starts on page 12.
Lyme disease and pregnancy: pg 21-22

Herx Info
Excerpt from The Lyme Disease Solution:  http://www.lymebook.com/jarisch-jarish-herxheimer-reaction-herx-lyme-disease 

Dr. Charles Ray Jones.
Video: http://www.ilads.org/media/videos/videos_jones.php This video is Dr. Charles Ray Jones at the beginning of his talk at the ILADS convention in 2011. His slides are here:
https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxkcmpvbmVza2lkc3xneDo3NDkxOGRjZTczMmZkNmVh 
Pregnancy safe and breastfeeding safe doses: pg 20
Breastfeed?: pg 22
His website: https://sites.google.com/site/drjoneskids/home

Symptoms checklist from my doctors office (not even complete):  http://www.naturopathic-doctors.com/sites/default/files/page_attachments/Lyme%20Follow-Up%20Checklist.pdf

If you are bitten by a tick. http://www.ilads.org/lyme/what-to-do-if-bit-by-tick.php You can also save the tick and send it for testing. Many doctors offices will receive the tick and send it out for you. Otherwise, google for a place to send it directly. Here is one place to send it: https://www.tickreport.com/ Around $50 for the test. (That’s low!)

Finding an ILADS trained Doctor. Some physicians treat publicly, especially NDs, but many MDs treat under the radar because insurance will not cover the Lyme treatments and can cause issues. To find some of those doctors, you can use this doctor referral system: http://www.lymediseaseassociation.org/index.php/doctors

My Lyme Pinterest Board. This has a variety of first hand experience stories, more information on different symptoms, and treatment options. https://www.pinterest.com/michelle_brown/lyme-disease/

My Pinterest Anti-inflammatory etc. recipe board. https://www.pinterest.com/michelle_brown/paleolymeanti-inflamatorycandidapost-pardum-etc-re/

Facebook pages to like!
Children’s Lyme Disease Network: https://www.facebook.com/childrenslymenetwork?fref=ts
Lyme Disease Challenge: https://www.facebook.com/LymeDiseaseChallenge?fref=ts
ILADS: https://www.facebook.com/pages/ILADS-Lyme-Society/120608014816?fref=ts
Dr. Daniel Cameron, current head of ILADS: https://www.facebook.com/danielcameronmd?fref=ts
Subscribe to Stephen Buhner, herbalist and author of Healing Lyme: https://www.facebook.com/stephen.buhner?fref=ts


Books:
Healing Lyme Disease by Stephen Buhner: http://amzn.to/1LnXUB5 (2005), or  http://amzn.to/1PEcO7H (2016)– herbal! If you can’t find a doctor to prescribe, you can try to treat yourself.

The Lyme Disease Solution by Kenneth B. Singleton, M.D.: http://amzn.to/1PEd5ro – probably the best book out there for Lyme and understanding it. Recommended by my doctors at North Coast Family Health, and my Lyme friend in MA who took her child to Dr. Jones.

Recipes for Repair, A Lyme Disease Cookbook: Recipes and tips for the anti-inflammation diet developed by Kenneth B. Singleton, MD, MPH, author of The Lyme Disease Solution http://amzn.to/1NKS8tD

Okay. Future fun stuff posts: 

First up: PETER BRENDAN! EEEK!



Disclosure: Michelle Brown is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to amazon.com.

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