Question for GWB, Daisy or Deejavu

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Caldonia Sun
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Date Joined Aug 2009
Total Posts : 310
   Posted 6/25/2010 7:50 AM (GMT -6)   
My doc is out of town and I can't run this by him for another two weeks.

Chronic lyme with new bite last year treated with seven months of oral ceftin and 12 IV rocephin treatments. Neuro stuff much improved. I really didn't have other symptoms.

I went on Dr. J's protocol in February. I have alternated between antitox for CNS and Musculo/Skeletal. I will be starting my fifth month next week. I use a portable far infrared sauna for detoxing.

Last month, I started having arthritic-type pain in my fingers and toes. This is new. I had it a few times in the past but not in every digit and not continuously for this long.

My question is, do you think Dr. J's protocol is no longer working for me? Did you have anything like this?

I'm really wondering whether I should do another round of abx.

Thanks for input.
Sally

Post Edited (Caldonia Sun) : 6/25/2010 8:37:00 AM (GMT-6)


daisyrlb
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Date Joined Jan 2010
Total Posts : 277
   Posted 6/25/2010 11:40 AM (GMT -6)   
Sally,

So sorry you have Chronic Lyme AND were bit again last year...of all the luck...not!

If you don't mind me asking...

How long have you had Chronic Lyme? Your main symptoms all along have been "neuro stuff"? What was your prior treatment(s)--previous to the seven months you share about in your post? Am I correct to assume your "doc" is Lyme Literate?

Do you have Dr. J's book? Are you following "The Perfect-7 Treatment and Detox Protocol(TM) Steps"?

I look forward to your answers. I am thinking about how I might respond to your questions...

Blessings,
Rhonda

Caldonia Sun
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Date Joined Aug 2009
Total Posts : 310
   Posted 6/25/2010 12:13 PM (GMT -6)   
Rhonda,

I probably had CLD for about seven years, not totally sure. It was not diagnosed until last year. Prior to second bite last July, I had no treatment. I had aches and pains off and on through the years, nothing too bad. I thought it was fibro and/or menopause symptoms and just general aging.

Yes, my doc is lyme literate. He would have followed ILADS suggested treatment, but I am allergic or have reactions to most abx, which is why I only did ceftin, then switched to naturals. Doc uses naturals, mainly Carnivora, which I'm taking, teasel, andrographis and samento. He is not familiar with Dr. J's products.

No, I don't have Dr. J's book, I need to get it.

Traveler
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   Posted 6/25/2010 12:27 PM (GMT -6)   
Although this question was not directed at me, maybe you would like to read a thread that was started on Lyme Arthritis earlier this month??
www.healingwell.com/community/default.aspx?m=1822103&f=30&p=1
-Live simply- Love generously- Care deeply- Speak kindly. May we all find peace along the journey to find healing.
Trav


GWB
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Date Joined Jul 2005
Total Posts : 570
   Posted 6/25/2010 7:55 PM (GMT -6)   
Caldonia Sun,

The first thing that comes to mind is detox. Infrared sauna is excellent, no doubt, but I don't think it's enough. How often do you use it? Are you doing the Jernigan detox baths with epsom salt and hydrogen peroxide with grated ginger frequently? If not, why not give it a try? I really do believe, for me, that detox baths help a lot. I always feel better after taking them.

If you are following Dr. J's protocol to a "t" and you aren't making any progress, I really don't know what else to say. Maybe Denise will have something to offer. Sorry things aren't going better for you.

Gary

Caldonia Sun
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Date Joined Aug 2009
Total Posts : 310
   Posted 6/27/2010 9:07 AM (GMT -6)   
Gary,

I do the skin brushing on days I don't use the sauna. Baths are rare - my tub is uncomfortable and the epsom salts water irritates certain tissues.

I have ordered Dr. J's book. I'm not sure what I am missing, but we'll find out.

Overall, I think I have improved on Dr. J's products. This pain in my hands is new and very mild. I guess I'm just concerned that it will get worse, or that lyme is eating away at my joints.

Deejavu
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Date Joined Aug 2005
Total Posts : 4284
   Posted 6/27/2010 4:05 PM (GMT -6)   
Hi Caldonia Sun,
I agree with Gary that it sounds like toxins are your problem, not the lyme bacteria.  Toxins can eat away at your body and do lots of damage including the problems you mentioned.
 
I believe that detox baths are utmost important.  Is there a way you can make your tub more comfortable?  Stores sell pillows made for tubs for resting your head and or feet.   How much epsom salts are you putting in your baths?   Maybe use less until your body becomes more adjusted to the baths.    Also, what temperature is your bath water?  Most people can't handle hot water when they first start, warm water is better...
 
Hope this helps,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


daisyrlb
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Date Joined Jan 2010
Total Posts : 277
   Posted 6/27/2010 6:12 PM (GMT -6)   
Hi Caldonia,

CLD–7 years! I was bit by that tick 7 years ago! I've said that 7 is God's perfect number, and this is my year for total healing! yeah

So glad you ordered Dr. J's book. It will answer a lot of the questions for you. I am with Gary and Denise on the detoxing. I've figured out a regular routine for me (ie: Daily, morning and night "Dry Skin Brushing"*; Mon, Wed, Fri Mornings "Epsom Salt/Hydro/Ginger" bath; Sat Night "Replenishing Bath"...among other things). Detoxing is helping me big time. I feel great most of the time. Big difference between the two previous times I was treated with abx and this time.

Hallelooooo, I mean, Woooohoooo! wink

*This is a link to a great article Denise posted about "Dry Skin Brushing"
proliberty.com/observer//20060215.htm

Caldonia Sun
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Date Joined Aug 2009
Total Posts : 310
   Posted 6/27/2010 6:33 PM (GMT -6)   
I think you all must be right. I had an episode of vertigo this morning, first one in a year. So I took a detox bath. <BR><BR>Yes, I was first bit at my daughter's wedding on Assateague Island in 2003. Then again last year. What a lovely memory of her wedding!

Post Edited (Caldonia Sun) : 6/28/2010 1:22:59 PM (GMT-6)


Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 6/28/2010 1:23 PM (GMT -6)   
I think I may be having some sort of flare up. I have symptoms that I have not had in nine months. I am scared.to.death!!

Traveler
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Date Joined May 2007
Total Posts : 35849
   Posted 6/28/2010 1:24 PM (GMT -6)   
Caldonia Sun-
When I first started to detox, I had flare ups in my symptoms & had a migraine every time I took a detox bath. I had to 'work up to' detoxing frequently.
-Live simply- Love generously- Care deeply- Speak kindly. May we all find peace along the journey to find healing.
Trav


Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 6/28/2010 1:49 PM (GMT -6)   
I have been detoxing, using a infrared sauna everyday. Hard to believe this would be the result. I really feel like I've suddenly gone way backwards.

Deejavu
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Date Joined Aug 2005
Total Posts : 4284
   Posted 6/29/2010 4:37 PM (GMT -6)   
The positive results of detox baths don't happen with one or two baths..  I am guessing what you are feeling are the toxins moving around and the more baths you do, the better you will feel.    Many people I know who first started the baths did not feel good in the beginning, a person needs to build up to them in order to feel better.  Dry skin brushing should be done every day whether you take a detox bath or not.   I also sit in my infrared sauna but still continue to dry skin brush and take my detox baths.    I am a strong believer that one can not detox enough, lyme or no lyme.  We happen to live in a very toxic world whether we are sick or not.
 
Hope this helps,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 6/29/2010 5:33 PM (GMT -6)   
Thanks, Denise. I'll keep trying. We sure do take a lot of upkeep, don't we :)

GWB
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Date Joined Jul 2005
Total Posts : 570
   Posted 6/29/2010 5:44 PM (GMT -6)   
Caldonia Sun,

I copied and pasted this from Denise's bath detox thread on the "New To Lyme--Start Here" thread.

From the detox bath recipe: "The Epsom Salts help draw out the toxins and at the same time the magnesium absorbs into your bloodstream, most people do not have enough magnesium. The Hydrogen Peroxide adds oxygen into your bloodstream which lyme spirochetes hate. Try to stay in the bath a minimum of 20 to 30 minutes, the longer, the better. Most people feel "worse" during the first week of detox baths and eventually feel better since it is a cumulative effect."

The feeling of going "backwards" is quite normal. In time, I believe you will start feeling much better after your baths. Remember, the more often you do the detox baths, the more you benefit.

Gary

Deejavu
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Date Joined Aug 2005
Total Posts : 4284
   Posted 6/29/2010 6:41 PM (GMT -6)   
Yeah, we really do!  Hey, I never want to be sick again so I call detoxing and the other things I do "preventative medicine"...   I think it was 2 summers ago that I found a tick attached inside my belly button and I was just fine..  If that tick did have any lyme bacteria, my own body killed the bacteria as I didn't get any symptoms.   It's good to have a strong immune system, it pays off for the rest of one's life.. 
 
Hmmm, as an afterthought, if I never became sick with lyme I would have never learned the importance of detoxing, eating right, exercising, take supplements, etc.   I would still be eating junk food, taking a Centrum Vitamin once in a blue moon, stay constipated (used to be one of my biggest problems since I was a kid), and the list goes on..    Believe me, I thought I would NEVER type the words I just did when I was suffering from this horrible disease but perhaps there is a reason for everything that happens to us in life.. we just don't see it when we are suffering...   There is a light at the end of the tunnel, that's for sure!!  yeah
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


daisyrlb
Regular Member


Date Joined Jan 2010
Total Posts : 277
   Posted 6/29/2010 10:01 PM (GMT -6)   
Caldonia, I admit when I realized a Lyme relapse was happening a few months ago…I had flashbacks to the two previous times I was treated with abx. It was all I could do not to get frantic. I could feel my heart begin to pound, "worry-thoughts" began, and I was just about ready to go into "Yikes-mode" when a sentence in Dr. J's book* came to my mind, "My desire is to see you liberated from the fear of Lyme Disease."

For me, if I go into "Yikes-mode" it heightens everything I am feeling and makes me feel a whole lot worse, so I try not to go there very often. smilewinkgrin

I'm so glad you/we have a place like HealingWell where we can come to get feedback and be encouraged. You're in my prayers. Keep your chin up, you're not alone!

*Beating Lyme Disease: Living the Good Life In Spite of Lyme" by Dr. David A. Jernigan

Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 6/30/2010 7:04 AM (GMT -6)   
daisyrlb,

Thank you for praying. This is a horrid time for our family. My sister has brain cancer and I just got the word last night that the docs are giving her 1-2 months to live. She is going into a nursing home because no one can care for her adequately. I live 4 hours away and am no help. So I'm pretty much in "yikes-mode" right now, which I know cannot possibly do me any good.

At least the vertigo has settled.

daisyrlb
Regular Member


Date Joined Jan 2010
Total Posts : 277
   Posted 6/30/2010 7:12 AM (GMT -6)   
O, Caldonia, I am so very sorry about your precious sister. I will keep you and your family in my prayers. Glad the vertigo has settled. Praying God gives you peace, that is beyond understanding, so that the "yikes-mode" settles too.

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 6/30/2010 9:44 PM (GMT -6)   
Caldonia, After my Mother's horriffic battle with laukemia (which I still think was lyme induced along with prednisone treatment) my biggest fear is for one of my syblings to get so sick. My heart goes out to you and your family.

something like this happening, Caledonia, could put you into a real tail spin. You have to really stay so close to every
breath you take and make sure that you even ARE breathing. This is huge in the trama deptartment and it lasts for years
after someone this close dies. We vascilate back and forth between disbelief, shock, denial,rage and the blackest whole of depression seeps in. You have to stay strong and that is not even advice ..it is my prayer for you.

Very suspicious.... my childhood friend from around the corner on Long Island died of brain cancer so fast too and he wasn't even 50 yrs old. I think it was LYME. but now I thing EVERYTHING is lyme. I didn't know SO much about lyme at the time he died. Was your sister ever tested? What or where did they say this tumor came from? aren't they curious? Do they have a reason for what brought htis on? how old is she?

keep a close eye on yourself and make sure you are eating. I was in a complete trance when my Mother was so so sick.
I ate candy bars and drank coffee.
hep c , lyme
Dad has lyme


Deejavu
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Date Joined Aug 2005
Total Posts : 4284
   Posted 7/1/2010 5:09 AM (GMT -6)   
Dear Caldonia Sun,
 
I'm so very sorry to hear about your sister, how very sad..   Right before my baby brother passed I was going to see him that very day and he was gone before I got there.   He was 49 and passed from melonama skin cancer.  It's still very hard for me to accept that he is gone so I can't even imagine what you and your family are going through during this difficult time.. 
 
I am keeping your sister, you and your family in my prayers.. 
 
If you ever need to talk please e-mail me, okay?  I'm here for you.
 
Lots of hugs,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 7/1/2010 7:46 AM (GMT -6)   
Bucci,

Thank you for the advice and prayers. Yes, I know this is going to be stressful. I am going today to visit her in the nursing home, but that means staying at someone else's house. I don't know about the rest of you, but I don't enjoy staying anywhere but home right now.

In addition, my 93 year old dad is asking to be put in a nursing home. He also lives 4 hours away from me, by my sister. My sister was the one who helped him manage to stay in his own apartment for as long as he has. I think he will go down hill fast with this happening to his daughter.

I am realistically looking at two funerals before the end of the year. I hope this doesn't sound selfish, but I really am frightened of how this will affect me. I told my llmd and he, too, was concerned and said it could cause a flare or relapse.

My sister is 63. She was never sick at all; this was very sudden. She lives in a small town and never ventured into the wild at all. I doubt this could be lyme. It is a glioblastoma and this is how they act - very fast.

Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 7/1/2010 7:51 AM (GMT -6)   
Denise,

Thank you for your offer. I don't know anyone IRL that has lyme. I talk to my daughters and hubby, but they really can't completely understand. The fact that lyme, for me, has attacked the CNS really makes any kind of emotional upset extremely hard. My nerves just start buzzing and I get so very anxious, all jangled around.

I'll check in later after I've seen my sister.

Sally

daisyrlb
Regular Member


Date Joined Jan 2010
Total Posts : 277
   Posted 7/2/2010 10:17 PM (GMT -6)   
Caldonia, Again, I am so sorry about your sister and your dad, too. I am sorry for all that you and your family are facing now and I am praying.

When I was a young wife and mother with two small boys in 1980 my mom moved in with us. She was very sick. The doctors gave her only two weeks to live, but I believe God in His love and mercy extended her life. She lived one year. It was a blessing to have my Mom living with us, although she was in and out of the hospital. We did not know how many days she had left. Actually, none of us know the length of our days really.

Anyway, we made the most of each day LIVING even though she was dying. When Mom had a good day, we would go out and do something together. We would play and laugh. Simple things:

* To the park with the boys
* Pick around antique and second hand stores
* Go out for ice cream
* Go to the pond and feed the ducks
* We even went to the state fair and Mom used a wheelchair

At home we talked, we cried, we read the Bible together, we prayed together, played with the boys, and other everyday things.

As much as possible we tried to live as "normal" as possible under the circumstances.

I found it helped me to live in the here and now and not let my mind wander to tomorrow, or the next day, and all the "what ifs"...that is very stressful and very tiring. I'm not saying it's easy but it helped me to be conscious of that. Also, I realized when I slipped into "what about tomorrow, etc. mode", the clock was ticking away and precious time I could be spending with my Mom was being lost.

There were lots of hugs, lots of I love yous.

I can only say all that was even possible because of God's grace. When everything within me wanted to go to bed, pull the covers over my head, and wake up the next day saying, "Whew, what a relief, it was just a bad dream."

Cherish the time you have now. I know it is hard to believe now, but it can actually be a very precious time with some good memories when you look back.

Take care of you and that will help your body, mind and spirit as you go through this very difficult time. What the others shared is good. Be sure to get your rest. Take nice relaxing baths. Cry. Grieve, that is normal.

Again, I am so, so sorry. You and your family are in my prayers.

Rhonda

Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 7/3/2010 8:56 AM (GMT -6)   
Thank you, Rhonda. It is a crazy time. While here in Pittsburgh, we are staying with my stepdaughter. She is due today with her first baby. Yesterday, the doc decided there is a problem with the placenta and induced her labor. Thanks be to God, she has safely delivered her baby boy this morning. So we will get to see him today. Meanwhile, we have her lovely home all to ourselves.

I also got to meet my new granddaughter for the first time, of all places, in the nursing home where my sister is staying. My youngest lives in CA and came to visit and she wanted to see my sister for what may be the last time.

How strange it has been to be in that small room with impending death and new life all swirling around us. The circle of life.

God continually reminds me that he is my refuge and my shield. I will be ok.
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