posted
Hello once again. I was actively posting during the summer when my wife Pam, was undergoing Rosepherin IV, daily for 3 months. Had temporarily relocated from VT to Ny to get the tx. Remember?
Pam went to final "follow up" last Wed. Treatment was extremely succussful! Pain most likely gone, will know better as she is in final stretch of tapering off the Oxycodone, Now down to 5mgs while awake from 120mgs 2 months ago, which had been a staple dose for the past 4 years. Hoping to go to zero by end of the month. Lymes doc assisted in tapering schedule as VT doc still believes she is in chronic pain and even the rosepherin is part of delusion!
Ringing in ears, headaches involentary movements of arms and legs are all gone. Fatique seems to linger, but physical rehab is next step to recondition. Hair is back to full curls,concentration is good though some fog with short term memory. her hand writing is legible but she hasn't started to drive just yet. She is also back to reading about a book a week and for the first time in 4 years, stayed awake for the 11 hour trip from VT to NY and back, with a short visit to "Target" dept store and the Docs visit.
We were not expecting the doc to tell us this was the final follow up. I have not cried so openly in public since 911, and our emotions are steadaly returning.. Pam has an open prescription for an antibiotic and an open slot at the docs anytime we feel a relapse may be occuring.
Plowing through what may have happened due to aging and what impact Chronic Lymes and lack of social interactions for the last 4 years makes things a little convaluded, but after losing most of our "friends" and a good part of our families, it will be fun to start a-new. We are planning, IMAGINE THAT! planning, to by an RV in the spring and traveling to find a new home, faith and dreams kept the "cookie jar" opened and no matter what we budgeted a deposit for a future we knew would come one day.
The biggest and most shared change in the both of us is being cynical. The ability to draw upon each other when the doctors, friends and folks we went to church with all disappeared was pretty devastating. Seeing the teenagers suffering, with thier parents in the waiting room at the docs office put me over the limits of tolerance. Pam wants to return to church, but i'm staying away, and have already had a public disagreement with Lymes literate doc here, in VT, who wouldn't sign a petition to help make change through the legislator. I have also found that I now seek conviction more than trustwortheness in a person before I share anything personnel. I had always trusted my gut, and the treatment that was afforded to us and to Chronic Lymes in general, corrupted my soul in such a way, that I have questioned my own morals and ethics, and it has given me such a profound awakening, and humility as I even "Type" to all of you corageous fighters of a Disease, that can so easily be erradicated given just one doctor with conviction against a heathcare system, congress, and greed so corrupted.
I pray for all of you, and deeply respect your persevearance. If you have hit a road block, or even think that you may have, trust that feeling and then do anything that you can to get to a doc who will use the protocol that will stop the despair. I wish I had and insisted that Pam would just trust my gut 10 years ago. All it took was taking the "Long Cut" a short vear off the beaten path, and three months of infusion. When a doc asks for a credit card in the treatment room, thats a good signal your in the wrong place.
I love all of you dearly, get well!!! Don't let anyone stop you
Bobby
Posts: 24 | From Vermont | Registered: May 2010
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thanks bobby....Pam was very fortunate to have responded so positively after having been undiagnosed for so many years.. (10+) ?
It appears that you took her to a LLMD who knows how to treat this illness aggressively...also very important!!
And most importantly, she has a loving, supportive spouse who stood beside her and was instrumental in her recovery.
Kudos! A wonderful report. Wishing the both of you the fulfillment of your "cookie jar dreams"...
best of health, feelfit Posts: 3975 | From usa | Registered: Aug 2007
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posted
Nice to read your post and especially to learn there are others who have lost "friends". Life is so different now. Glad to hear you are moving on.
Posts: 707 | From Colorado | Registered: Jul 2010
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posted
What people have to do to get treatment for this disease is awful, and when they do get better, richly deserve it. Wish we could all get better.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thanks, let me clarify a couple of things. Pam was diagnosed in 1989. Treated, it came back in '91, treated with twice as much this time, then came back in '93. Diagnosed with Chronic-recurrent neuro Lymes disease, but no protocol for tx, so she went through the litany, fibro, cfids, delusions, every type of arthritis and as more controversery occured was treated with antidepressants and oxcycodone. 2003 we started with oral anti biotics, then after 3 years started driving 6 hrs to NY, and went to one of the best and went through 3 different protocols finishing with Bicillin IV. No responce. Fortunatly, doc gave us another doc as he couldn't take medicare any more, and we got the president of LLMD's who at the end of treatment told us he feared there would be no responce. Send me an email or msg where I can give info to get folks to him and his practice. He is leader in tx. Also this time Pam went "straight Meds" no supplements etc, no diet change, just higher probiotics. Peter paid Paul and tx and office visits were free, no out of pocket.
The doc has very good record keeping and given the oppurtunity, may one day find why one thing works and some things don't for each patient. Also Pam is not "Fully Recovered", about 80 percent ambulatory now. Thanks Bobby
Posts: 24 | From Vermont | Registered: May 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi Bobby, so glad to hear Pam is doing so much better. She is very lucky to have a supported husband, that does make the difference.
I hope she continues to get better!
I'm going to PM you now.
Take care!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
Thanks so much for coming back here to let us know how you and Pam are doing!! That is so wonderful to hear that you are making such progress in your lives.
Yes, chronic illness changes you!!
I'm concerned that Pam is no longer on ANY antibiotics???? Right??? Not even orals?? A Lyme patient should be on antibiotics until they are SYMPTOM FREE for at least 2 months.
This is really scaring me!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Pam stopped the infusions in the middle of Aug., then went on "ceftinin"? orals for two months and always on one other. Her responce to the ceftinin was EXTREME fatique, combined with lesser need for pain meds. They stopped the ceftin, she weaned off the oxycodone and that left her on actigall? We did 3 thirty day follow ups (90 days). Don't be scared, this doctor has been doing this treatment come hell or high water, lawsuits that he and his patients won for 18 years. He's established, and his PA's have worked besides him for up to 15 years. Pams response to the IV roceftin was with some fatique, but uphill after two weeks. Go figure. I'm not quite sure what I can post here, so email me and I'll give you his website, addy, phone number, and all the scoop on his practice, which was the most positive expierance with caring, knowledgable, empathetic staff that you have ever prayed for.
Pam has an "open" script for antibiotics in case of relapse and the doc will open a slot immediatly if need be. Remember, STRESS is the factor that can cause mayhem. Do every thing slowly. Going on, coming off, take your time and the the "ride" is not so scary. Trust that our expierance is OUR expierance and although "proven" it is not accepted in many, many states, and the closer you get to Conn. the more acceptable the protocol is. But it is pure medicine and it worked for Pam. Email me, then call the doc, take the steps and dispel the fear. Bobby
Posts: 24 | From Vermont | Registered: May 2010
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