Dr. J. (CT) Families

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 12/4/2008 8:10 PM (GMT -6)   
Just checking in to ask if anyone is sked. for CT to see Dr. J. next week -Thurs. or Friday?
 
 
Blessings,
Sojourner (Diana)

"God loves with a great love the man whose heart is bursting with a passion for the impossible." ~booth

www.stylebyheatherrose.com -click "Lyme testimony" and "Lyme Disease" for a panoramic view of the truth.  Lyme disease - coming to a tick near you!


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 12/4/2008 9:02 PM (GMT -6)   
Uhhhhhh yes.....weird. why??????
E-mail me directly. marieallyne@aol.com
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 12/4/2008 9:03 PM (GMT -6)   
I think I have one for the 12th, but I am going to cancel it....
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 12/4/2008 9:04 PM (GMT -6)   
Can you e-mail the phone number to me...lol
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 12/4/2008 10:15 PM (GMT -6)   

We will be there on the 12th and I try to connect w/our Lyme families while there.

We stay at the R.McD house.  Will arrive the 11th - evening and stay over...

will email u.

Blessings, Sojourner


"God loves with a great love the man whose heart is bursting with a passion for the impossible." ~booth

www.stylebyheatherrose.com -click "Lyme testimony" and "Lyme Disease" for a panoramic view of the truth.  Lyme disease - coming to a tick near you!


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 12/5/2008 10:32 PM (GMT -6)   
70 hits and no one else headed for CT?  Bummer...   :-)

"God loves with a great love the man whose heart is bursting with a passion for the impossible." ~booth

www.stylebyheatherrose.com -click "Lyme testimony" and "Lyme Disease" for a panoramic view of the truth.  Lyme disease - coming to a tick near you!


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 12/6/2008 8:05 AM (GMT -6)   
sojourner, I wish I was!  Have a safe trip.
 

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/6/2008 8:21 AM (GMT -6)   
yeah - have a safe trip!
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 12/7/2008 9:20 PM (GMT -6)   
Hi Frango,
Thank you for asking about Heth.  Long journey home.  Home still being defined, as you well know when walking by faith.  Last year at this time, we were just pulling her through six months of traumatic brain injury fm the acute swelling and blindness, in and out of the hospital, life threatening complications one after the other.  Her gut got involved and she was not able to eat solids for months; fighting nausea/vomitting daily, violent, dehyrdation/rehydration.  Our IV micronutrients a lifesaver and that organic baby food and a baby spoon along w/Dr. B's brilliant approach to healing the gut, kept her with us.  Winter brought the onslot of Bart and a sense of square one; however, in hindsight, it was not - we had made progress. 
 
She has worked so hard on neuro cognition and brain remediation.  Her pituitary flattened during the Pseudotumor Cerebri throwing her back into hypothyroid.. again.  This time, so much more challenging and this time, our approach, fully natural.  Her body is beginning to respond, slow but sure from the core out on that.  Two steps forward one back.  Someone once said that the frontal lobes are to the brain what a conductor is to an orchestra, a gneral to an army, the chief executive officer to a corporation.  Without the frontal lobes, the army collapses and the war is lost..  she had lost her ability to make decisions, to think, her coordination gone (this took her ballet).  This created a vulnerability that effected more parts of her brain.  Organization, problem solving and hey, how about those hormones!  We needed a plan of action and our medical debt limited the experts.  So guess what we did?  We entered training and research...again.  From Lyme disease to brain remediation.  Who says you have to have a degree?  turn   We started w/sensation and basic knowledge and created avenues for Heth to learn and be tested in the input, comparison and output of sensations.  This was feeling nearly impossible and very frustrating.  It was painful to tell the brain what it just couldn't 'get'; but once the message was delivered to the inside a few times, the motivation to fight a new fight, began.  From there, we added the executive function comparitives and challenges through games that work different areas of function.  Oh, how hard is that?!!!  We are at the metacognition zone and this is the most difficult.  Esp. as a young adult ready to just move forward but running into the obstacles of the weakened parts.  The 'Dysexectuve' part of this is a challange; but we see more and more of Heth.  We call it 'noisy brain'.  She is learning compensatory abilities and at times must simply remove herself b/c she's used up all of her 'brain energy' for that day.  The migraines and head pain she has known - not okay!  But, a different Heth is slowly emerging... she's like our butterfly coming through each stage.
 
The executive function.... seemed lost; but over the past several months we have watched her work so hard to remediate her brain and redeem some of the short term loss.  Unable to afford the 3-5,000 neuro psychological testing, we had to think outside the box.  The computer has been the answer; retraining a brain can be achieved through occupational challenges and a constant re-entering.  Like the permanent appearance of her optic nerves having lost all spontaneous spasming leaving the prognosis for permanent blindness, this too was in question by her team as to whether this could be turned around; but always hoped for.  But today her vision is 20/10 in both eyes.  So, imagine how my faith has grown.  Hers was already in place and unshakable.  It made the purpose for cheering her self motivated testing of the brain so much more believable and hopeful..
 
This Spring/Summer was her MakeAWish.  Bittersweet blessings.  She gave it back for Lyme research, walked the runway for every child, teen and young adult fighting this battle and did relapse for weeks afterward; in the end is so grateful for how the Lord has guided her steps and helped her over each mountain.  We hosted the Lyme forum at the end of summer and again, a setback; but, what a blessing for so many.  How do you have regrets.  It's not about us.  Alot of energy required for both; most unaware of the pain she was carrying.  She walked with grace and beauty. 
 
Bart and Babs have seemed to be her returning thorns.  The strain of bart - so bad.  It reared again over the past few months but is quiet now.  Perhaps?  :-)    B/c of her drug resistence now, we attack w/the herbal antibiotics and are constantly addressing deficiencies as they surface, detoxing, stimulating her immune system to create its own antibodies (most impressive when we are ahed of this monster), keeping parasites, virus's, fungals, yeast issues in check and praying for hers and every young person's future, who battles this and knows the sense of loss during these precious years. 
 
She has her permit and we'll keep that status for now.  She's a good driver and we decide together when 'today is not a good day for a teen lymie to be on the road'. 
 
She has been a role model for so many across the nation.  We are very proud of her convictions and her willingness to serve even while in the trench, herself.  Our home a revolving door for Lyme families weekly, an avg. of 10/week now.  She desires some social interaction w/young adults her age and has had a couple of opportunities to do so at a college coffehouse that opens once a week very late.  This works w/her insomnia. 
 
We are praying about some online courses and provision for that so that she can keep goals in front of her.  Its sad, isn't it?  The money determines the rate of healing at certain levels.  Patience is truly a virtue...and a test.
 
Her standard w/in her faith remains high.
 
The pain she has known has been horrific.  I wonder at how she has survived.  I wonder at how several of our young people who have battled to this depth and more have survived.  Each one has great faith and perseverence deep within their spirits and we do know it comes from the Lord and the time is determined by His plan for each one's life.  So we pray for strength, comfort, joy and those much needed answers ~ and we are grateful for those who have gone before us and paved the way.
 
Heth's favorite verses are 'Do not let anyone look down on you b/c you are young, but set an example for the believer in speech, in life, in love, in faith, and in purity.”   When sharing her Lyme testimony, she says that (biblical) she is running the race set before her; that she is off and running and she's not looking back!
 
Yep, and a child shall lead them.
How's that, Frango?  Thanks so much for asking.  Not used to sharing, don't know how to shortcut it, and appreciate your caring kindness.  You are a wise one, in your research, your faith and your words for others.  I always appreciate you very much.
 
Sorry it's so long...
 
Blessings,
Sojourner (~d)
 


"God loves with a great love the man whose heart is bursting with a passion for the impossible." ~booth

www.stylebyheatherrose.com -click "Lyme testimony" and "Lyme Disease" for a panoramic view of the truth.  Lyme disease - coming to a tick near you!

Post Edited (sojourner) : 12/7/2008 8:28:37 PM (GMT-7)


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 12/10/2008 8:43 PM (GMT -6)   

I was sure that at least 25 if not 50 of you would have jumped on and said you would join us up north to see Dr.J.; but, alas - no other takers.

Please pray for Martha's Vineyard.  I do not know if we will see each other, depending on how the week ended up for their family; but it got tough this week for them..

If you don't hear from us again, we're in heaven.  Now, wouldn't that be the ultimate?

Blessings,  Sojourner...


"God loves with a great love the man whose heart is bursting with a passion for the impossible." ~booth

www.stylebyheatherrose.com -click "Lyme testimony" and "Lyme Disease" for a panoramic view of the truth.  Lyme disease - coming to a tick near you!

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, August 23, 2017 8:06 AM (GMT -6)
There are a total of 2,858,829 posts in 313,691 threads.
View Active Threads


Who's Online
This forum has 155285 registered members. Please welcome our newest member, Liz_j_28.
437 Guest(s), 14 Registered Member(s) are currently online.  Details
19tarpon47, Liz_j_28, TMC, Gear, Doire, browntrout, MarjieKay, Lynnwood, Alice22, sanmay, raspberryswirlgirl, Traveler, Htownman, hopelessinmo


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer