Tuesday, September 1, 2015

Peter Brendan

Today was a great day so far, despite the dramatic exit at the doctors office when the swinging door broke the plastic cover on the emergency light and knocked down the bathroom sign. *sigh* Having three little guys go with me to my doctors appointment is always an adventure, but I love them and they are such a blessing.

So lets talk about that sweet third child that was added to our family last December! Although the timeline of when I was pregnant was really difficult because of Lyme Disease, I was never miserable because of the pregnancy. Most of the pregnancy felt really positive even while the Lyme Disease was often debilitating and had various effects. We had one little scare when his heart rate and mine were elevated more than anyone liked, but an extra ultrasound and a non-stress test sent us home to wait it out.

With a Lyme specialist MD letting my midwife and I know that he didn't think there was any automatic reason to do a hospital birth, we went ahead with the plan at a Birth Center. What's more, he had a lot of respect for midwives and conveyed that to my midwife/ND. Such sweet little additions to our difficult journey.

My middle son, Isaac, was 2 weeks and 1 day late, vbac, and I had to be induced with Pitocin. This time, I was counting on my body responding a little faster since I had now done it all once before, and was hoping natural induction methods would help things along. 1 week and 6 days late, my water broke and we headed to the birth center in the middle of the night. The birth center was an hour away, so we arrived at 3am and got some more sleep with contractions around 5-6 minutes apart.

I'm really not going to tell all the details, but I was so happy to be able to have all this happen basically on it's own. I got into the waterbirth tub late morning and we had him about an hour later. It was just really fantastic and I felt so comfortable with the people that were there (two midwives, a midwife in training + my husband) and the environment. It wasn't distracting. I know that and the water helped pain management for me.

Peter was a good sized baby at 9lb 8oz. He looked so different from my other two that I was honestly startled to see his sweet face and very short hair. He was strikingly unique right from the get go and continues to be!




We were going to be looking out for a fussy baby, for feeding and sleeping issues, for weakness etc. to keep an eye on Lyme being passed in utero, but he showed the opposite! He was a healthy, strong newborn baby. He has been so calm and happy - the quietest of all my children. All his newborn tests were negative for Lyme!

Calm with my midwife holding his hands.
I don't know what kind of danger he was really in or how to quantify that. I was always concerned about how much what I was going through affected him. I saw that his heart rate seemed to be tied to mine, which was slightly elevated, but never quite in the danger zone except that one time. While I was my sickest, he didn't move too often, but moved enough to let me know he was still there throughout the day. And when Lyme treatment got more effective, he perked up as I did and it was such an unbelievable joy to feel him bouncing around and know that whatever danger he might have been in, it was getting better!

This is where his middle name came from. We knew his first name from early on in the pregnancy, but later on I came across "Brendan", which means brave, and it seemed to fit so well. I felt so sorry that he had to go through all the miserable moments with me, but he was a champ. His life also made me search out answers to my illness with zeal because of how it could affect him and I know that saved me a lot of prolonged pain and difficulty, too. He was helping his momma without knowing it and before he even came out of the womb.

We love this little guy.

Coming home the same day he was born to rest in our home.

1 day old

2 weeks old

January

July


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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