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Treatment issues for children with Lyme

Dr Charles Ray Jones is a man with three ordinary names - yet he couldn't be any more extraordinary in his service to chronically ill patients, the children he treats every single day.

A reader sent a note last week that brought tears to my eyes -- the joyful kind.

Here is part of her note:

"My 11 year old is now under the care of Dr. Jones and is making incredible progress in his path to wellness. I appreciate what you are doing. Thank you for being willing to get the word out. What a frustrating journey this has been but I finally have my medical support system in place. It took a while. I was told by an infectious disease specialist in Maine that I was crazy and that my son was perfectly healthy. Dr. Jones is a saint and he has given my little boy his life back. He is again running and climbing trees and happy and bubbly...a far cry from last year at this time. I wish all of you the best and again, thank you. Have a wonderful Thanksgiving."

Unfortunately, too many moms can relate to being told by a medical professional that there is nothing wrong with their kid, when the reality is that if Lyme bacteria is present, treatment could restore the child's health (and the mother's sanity).

Dr Jones has been called (by a colleague of his), "an international treasure - a courageous, selfless, inspirational, and outstandingly gifted clinician who has helped thousands of the most severely ill children with Lyme disease from around the world to regain their health and their lives."
r Charles Ray Jones: upcoming interview">
Dr Jones talked with me a few weeks ago, about Connecticut Governor Rell's June 2009 decision to allow doctors to treat Lyme disease. He also talked about the significance of the recent IDSA Lyme treatment guidelines hearing in Washington, DC, and the future of Lyme disease treatment.

Listen to the interview in the member’s portal.
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Readers write about Lyme brain

"Kmart" sent these comments in response to last week's post:

1 - I once lost my truck key on the job (gardener). I had three people (customers), for thirty five minutes, looking all over their house and property for it. I must have checked my pockets thirty times and even flipped out my front pockets like a rabbit. Yes (you all have done this) while just standing in confusion & embarrassment my stomach fluttered & face grew red as I had to suddenly admit that I found my key in my right front pocket while casually just standing there. Oops, my bad. There is still no way to explain lyme brain to others.

2 - Having read through the protocol, how in the heck is someone with stage 3 suppose to remember all that? I believe any attempt (at a protocol) is a good one for fighting Lyme. Seriously, there is no way I could stay on this as I am still looking for my keys!

***

Success stories usually, if not always, follow failure. The classic example is learning to ride a bike. If it took falling over nine or ten times before you finally got the balance thing down, than those nine or ten times were more about succeeding than failing.

Healing from Lyme has been sort of like that for me. Starting with getting a diagnosis, which doctors kept getting wrong. I've talked to people for the success stories who said that they went to more than 30, or in some cases more than 40 different doctors before getting a correct diagnosis!

It still makes me shiver to think about the dermatologist who wouldn't even look me in the eye while he was examining my skin rash. I'd brought in a notebook with questions I had jotted down, because I knew I wouldn't be able to remember them unless I wrote them down. The minute I opened it and read my first question, he stopped making eye contact with me! It felt as though he saw me as some sort of weirdo to protect himself against. I absolutely did not feel like I was in the supportive hands of a healer. Of course, it didn't help that I stuttered terribly whenever I tried to talk. He was one of the docs who had prescribed prednisone for my "excema." He was sure he was right. I was sure I was getting worse, not better. At that time I had no clue that the medicine itself was making my disease spread inside my body and brain, quickly rendering me unable to think, talk or keep my balance while walking.

Lyme brain can definitely be funny in retrospect, but I know it's absolutely terrifying when you've got it.

Whether your stories are humorous or scary (or both!), I invite you to share one of yours here. You can either email me directly: ldrd.support@gmail.com or put it in the comments.

All good wishes for healing to every one of you,
Suzanne


P.S. Kmart, I know what you mean about remembering the protocol. I kept notebooks full of schedules for when to take which antibiotic or supplement, to take it before meals, between, whether to take it with water or juice, or put it under my tongue, and how many drops of this and that, when to increase or decrease...It got to where I was either taking a medicine or writing about having taken it. Having Lyme is hard -- but healing from Lyme can be just as tough!
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Working with Lyme brain - Under Our Skin

Under Our Skin filmmaker Andy Abrahams Wilson discussing his film on The Wrap.

I have to laugh now, because in retrospect it's funny, but at the time it was embarrassing. It's a memory of my interview with Andy, which I conducted a few years back before the Turn the Corner Foundation stepped in to help fund his film. I'm sure he didn't think much of the incident.

In our conversation, Andy was very gracious. He spoke eloquently about his sister's trouble with Lyme disease, and later, his feeling of helplessness when a close friend of his then discovered she also was suffering from late-stage Lyme. He'd been so moved to do something about the misunderstandings around Lyme symptoms and Lyme treatment, that he entered into the long process of making Under Our Skin, which is still gaining ground and helping the Lyme community to get the word out.

The embarrassing part was that in interviewing him, I couldn't get my phone recording equipment to start correctly. Lyme brain was so intense at the time for me, that I couldn't fix the problem. I had to hang up and call him back. I was too proud to admit that I was having a hard time that day. I couldn't tell whether it was the equipment or me who was glitching. However, Andy was incredibly kind and generous, and allowed me to reschedule our talk for later that day.

It wasn't the first time that had happened. A month earlier, I'd gotten through an interview with Dr Christine Horner, but I could barely hear her the entire time. My tinnitus was roaring, but that wasn't it. It was that awful, foggy Lyme brain again. It took away my ability to multi-task and hold two thoughts at a time. Normally I'm a fairly good troubleshooter, but there was no way I could troubleshoot and conduct an interview at the same time. It didn't even occur to me to ask if we could reschedule. When the interview was complete I hung up, and discovered that I'd put my earphone in backwards. No wonder she'd sounded faint the whole time.

These are not pretty memories.

However, remembering the bad times allow me to measure how far I've come back into balance. Using my brain is one of my favorite hobbies. I guess I'm grateful for all my Lyme experiences now, since I've come out on the other side, and can actually work my recording equipment pretty smoothly again...usually.

What about you? Care to share a Lymie memory? Please share your story in the comments!
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Veteran's Day

This is Veteran's Day. Let's take a moment of silence and give thanks to all the veterans who serve our amazing country. In the UK, November 11 is known as Remembrance Day, and in other countries this is Armistice Day.

This post is dedicated to my dad, who served in WWII in the US Navy. Dad was a radio operator and spent many months undersea, working inside Navy submarines. He and mom raised five kids, and he never lost his love for the ocean. Miss you still, dad!

Harold "Bud" William Arthur (1923 - 1974)
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Dr Cowden's updated Lyme protocol

Are you treating Lyme disease symptoms after having received a late-stage diagnosis? The problem for many of us who are healing from Lyme is that we know antibiotics are tough on our systems. While I have no doubt that longer term antibiotic protocols are key in killing the Lyme bacterial complex, I've talked to a lot of people who are either severely allergic to antibiotics, simply can't tolerate them after a long period, or have no health insurance coverage and can't pay out of pocket.

Which leaves us with what alternatives? It's very scary to hear your doctor tell you that in order to treat you for Lyme you must have antibiotics, when you a) can't tolerate them physically, or b), you can't afford them financially.

A friend of mine asked me about Lyme the other day. She'd heard that I'd been very sick and wondered if I was feeling better. It was such a huge pleasure to realize that I hadn't mentioned Lyme once to her, since we met a year or so ago. Speaking from my own experience only, I have found that treatment with a combination of methods, including behavioral changes, nutrition and diet and rigorous exercise has worked really well. Not as quickly as I'd like, that's for sure! But these days I consider myself to be living a healthy, Lyme-free life. In part, I achieved that goal with the help of Dr Cowden's protocol, using Samento and Cumanda and a host of other supplements.

Dr. Wm Lee Cowden says that he has discovered that “antibiotics do seem to work fairly well in a lot of patients. But, if they've had the illness for longer than six weeks, the chance of antibiotics getting rid of the infection, in my experience, is pretty unlikely, pretty remote. So, they're basically just guaranteeing that they'll stay on antibiotics for the rest of their life."

“The problem with staying on the standard pharmaceutical antibiotics long term," he says, "is that you kill off the friendly bacteria in your gut, and you cause an overgrowth of fungus in your gut, so then you trade one problem for another."

(The above quote is from my article on the effectiveness of Dr Cowden's Lyme protocol, in the Townsend Letter - The Examiner of Alternative Medicine, April 2007.)

PROTOCOL FOR LYME BORRELIOSIS From Wm. Lee Cowden, MD

Please also note Dr Cowden's condensed support program, updated February 17, 2009.
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