Remission when is it really remission.

[mkay]

SO inspiring, thank you for posting!

[anno]

What an amazing story. Wonderful to read. Your resort/farm /retreat sounds heavenly.
Where do we sign up?:D;)

[marg]

Hi Dolores!

This is just so GOOD!I'm so pleased for you. What an encouragement for others! Wonderful that you wrote in- I do remember you from when my daughter was first sick.

[Parisa]

Dolores,

So good to hear that you are doing so well.  I held to tight to your posts about your lungs recovering as there were very few with lung involvement.  Your posts were my guiding lights that kept me going even when the pulmonologist held out no hope to my husband.  We have since proved the pulmonologist wrong and reversed most of the damage and he is at about 90% all around.  After an intensive Lyme/Babesia protocol, he is now on an antimicrobial herbal protocol with the thought that he might go completely off the herbs.  He is still on IVIg although he has spaced that out from every four weeks to six weeks now.  Personally, I'd prefer that he stay on some sort of maintenance antibiotic as it gives me nightmares to ever think of going back to that hole.

[Mumof3]

Hi Dolores,

It is great to hear your story. Thank you for sharing it with us. You provide us SD folk with inspiration!

Lynne G. was also a godsend to me as well. Especially in the beginning when I was a complete and utter basketcase. She really helped me in the early days and I am so grateful for the help she gave me. It is great being able to stay in touch with her and bounce ideas off of her now.

Thank you for coming back and keeping us posted about your progress!

[Eva Holloway]

Hello Dolores,

I am so glad you hanging around here too. I always enjoy your wisdom when helping other people. I am doing so much better than when I saw you 18 months ago in Corpus Christi, TX. Today I walked through the whole convention center in San Antonio, once from the front door to all three floors and then back again. I told Burl I felt very proud of myself. I am so glad to talk to you.

I have been taking LDN and Dr. K. is making sure I stay on track. I will come and visit you on your retreat, just keep a space open for me. Maybe we could get some doctor come and give a seminar.

How is your back, hope that is getting better. Glad you are finally getting into your place.

Say hi to Mike from the both of us.

Love you, stay upbeat and stay well, we need your knowledge.

Eva:D

Eva Holloway

[JBJBJB]

[user=40]Kim[/user] wrote:

I'm in remission, you can read my story in my link, but am considering going back on a maintenance dose of Mino for insurance.  I have an arsenal of abx and I'm not afraid to use them. :roll-laugh:

Kim,

I was reading the Lyme treatment suggestion by Dr. Joseph Burrascano Jr. He mentioned about this CD-57 test. I quoted directly from his article:

“<span style="font-size:2]THE CD-57 TEST[/size%;”>
[/size]
[align=left]Our ability to measure CD-57 counts represents a breakthrough in LB diagnosis and treatment. Chronic LB infections are known to suppress the immune system and can decrease the quantity of the CD-57 subset of the natural killer cells. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active that infection is, in LB we can use the degree of decrease of the CD-57 count to indicate how active the Lyme infection is and whether, after treatment ends, a relapse is likely to occur. It can even be used as a simple, inexpensive screening test, because at this point we believe that only Borrelia will depress the CD-57. Thus, a sick patient with a high CD-57 is probably ill with something other than Lyme, such as a co-infection. When this test is run by LabCorp (the currently preferred lab, as published studies were based on their assays), we want our Lyme patients to measure above 60; a normal count is above 200. There generally is some degree of fluctuation of this count over time, and the number does not progressively increase as treatment proceeds. Instead, it remains low until the LB infection is controlled, and then it will jump. If the CD-57 count is not in the normal range when a course of antibiotics is ended, then a relapse will almost certainly occur (page. 8)”[/align]

[martysfolks]

Thank you Mkay.  I just read my latest chest x-ray report.  Totally normal.  Not a trace of fibrosis.  I am in shock!  According to a room full of specialists, there was nothing more they could do for me back in 2005.  I have not had a pulmonary function test lately, but will be getting once soon.  If that is up past 55% then I will know that my lungs are completely healed. Will keep you all posted…. Take care, Love to all, Dolores & Mike

[martysfolks]

Hi Anno,  Thank you so much for your encouragement.  The e:mails coming in are just too wonderful for words.  If you read my prior post to Mkay.  I mentioned my latest chest xray.  Completely normal.  Not a trace of fibrosis.  A roomful of experts said there was nothing more they can do for me in 2005 because the pulmonary fibrosis was too advanced.  The next test will be a pulmonary function test.  If that is higher than 55% then I'll know that my lungs are either healed or in the healing process.  Will continue the minocin till I get to be as healthy as the day I was born.  Wow!  What a stretch that would be!  This is the miracle I have prayed for.  Take care, Love to all Dolores & Mike

[JBJBJB]

[user=111]martysfolks[/user] wrote:

I just read my latest chest x-ray report.  Totally normal.  Not a trace of fibrosis.  I am in shock!  According to a room full of specialists, there was nothing more they could do for me back in 2005.  I have not had a pulmonary function test lately, but will be getting once soon.  If that is up past 55% then I will know that my lungs are completely healed. Will keep you all posted…. Take care, Love to all, Dolores & Mike

I am so encouraged and impressed. My lungs went down hill fast from 2008-2009. Good news is it stopped progressiong (to the worst). My pulmonary doctor told me, “your lungs are ONLY getting worse each day. There is NO WAY it will be cleared up. Eventually you will need lung transplant!” :sick::sick::sick:

I am so happy to see yours is all normal. Not a trace of fibrosis. Wow….. I am really looking forward to this day!

Thanks for sharing this great news with us.

JB

[martysfolks]

Hi Parisa.  So happy to hear that your husband is doing so well also.  So glad we have support groups and this site especially.  I just read my latest chest xray report.  The findings are that my lungs are totally normal.  Not a trace of fibrosis.  The next step is to get a pulmonary function test.  If that is higher than 55% then I will know that my lungs are either healed or in the healing process.  Isn't this wonderful?  Congratulations to both you and your husband.  We must not ever forget the care givers and loved ones that stood beside us when we couldn't take care of ourselves.  Thank you Parisa.  There is a special place in heaven for caregivers.  You are very special.  And congratulations on becoming a volunteer.  We need more special people like yourself.  The best to you and your hubby.  Love all around, Dolores & Mike 

[martysfolks]

Hi Marg!  How is your daughter doing?  Refresh my memory a bit.  I've gotten much older in 5 years.  Either that or I'm trying to forget that I'm getting older!  Heeeheee!

I don't remember your story off hand and I've also been in a 5 year brain fog.  It is so liberating trying not to make scleroderma or any other disease, the only thing on your mind day & night.  We are especially more diligent when it comes to our children.  They are a gift from God on loan to us and we must wrap them in love and take special care.  It is so sad when a child is sick and I hope your daughter is really doing well now.  Please update me.  Thank you, Lots of hugs to you and your daughter.  Love all around from Dolores & Mike

[martysfolks]

Hi Mumof3.  You really have your hands full with a trio of blessings.  Hope they are doing well and that you are too.  Refresh me on your story.  I am coming out of a 5 year brain fog and need all the help I can get.  Lynne G. is a very special person.  I adopted her as my baby sister a long time ago.  Actually she is my guardian angel on earth.  Because of all she taught me about S/D and humanity. I hope I am a better person today..   She told me about A/P and that is why I am alive.  I am totally grateful she was sent to me and  I am glad she touched you too.  That makes us all kindred spirits.  Take care and pass the love around.  Hugs from us, Dolores & Mike

[martysfolks]

Somebody please send this article to Lynne G.  I've just learned that she is positive for Lyme also, besides Scleroderma.  I am not too computer saavy to know how to forward the article from here, so please someone send it to her.  I would appreciate it very much.  Dolores

[martysfolks]

Hi JB x's 3.  Yes, I can't believe it myself.  I was given only 5 months.  I have asked many doctors along the way if Pulmonary Fibrosis is curable and I've always been given a negative answer.  You know Pulmonary Fibrosis is a diseas unto itself also besides being part of Scleroderma.  A very dear friend of mine got diagnosed with Pulmonary Fibrosis just before I did back in 2004.  She also had Raynaud's. but never developed any immune altering diseases.  Her lungs continued to deteriorate and we all thought we were going to lose her.  She just celebrated her one year double transplant anniversary and is doing fine weaning from Prednisone.  She is on that for the rejection part and I hope she continues to do well.  I wish I could post the results of my first chest x-ray & MRI, because it describes the honeycomb pattern of fibrosis in the lungs and I was full.  My latest one just says normal findings.  I still don't believe that myself and will get another chest xray and MRI done elsewhere in the near future.  Just like the blood test, I had to retest myself 3 times to be sure it was not a mistake.  So far so good.  In the past 6 months, every doc that has listened to my lungs, says clear.  They used to say I had crackles.  Now it is very quiet in there.  So, far so good.  I will check in again after I have seen a pulmonologist.  My prayers are with you for a full recovery.  Take care, Love all around ~~~~Dolores & Mike

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