posted
As some of you know I have left Dr. C and his protocol's that just weren't working.
I have switched to Dr. R's Lyme and Chronic Illness clinic in Kansas City. I have started IV abx and the first one is Vancomycin 1,000mg 2x's a day. I am also on glutathione 3x's a week, antioxidants everyday and IV heparin everyday.
I get treatment everyday of the week including the weekends.
My diagnoses are:
Borellia Bartonella Mycoplasma Several viruses (staph, strep, mono, ect.) Vasculitus Low Immune Function Some slight adrenal problems
So far I have been in treatment for 9 days and I am really having a hard time with the herxing. It is like a herx hell. But besides that, since I have been here I have watched 4 different patients walk out of here and move on with their lives...
I know I will get well just like all the other patients have before me, it will just take some time to get there. These first couple weeks are going to be really hard on me perhaps the whole first month....
I will keep this thread as my thread to update with my progress and to answer questions send me a PM....
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CherylSue
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posted
Best of luck to you Byron. BTW, what is vasculitis?
Wishing you well, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
Vasculitus is restriced blood flow to the brain.
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Byron, I think of you often and have wondered how you were doing.
Man oh man, you have a load of infections. Please, please keep us posted.
My daughter was making great progress on minocycline alone, but in the last couple of months, she is starting to decline. Seems like Babesia symptoms are coming back.
So, I'll be watching you. Keep up the fight.
Posts: 2903 | From AZ | Registered: Feb 2006
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feelfit
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posted
Best to you Byron! Keep us posted. I hope that you are soon rid of that nasty headache and nausea!
Feelfit Posts: 3975 | From usa | Registered: Aug 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I'm interested in the Vancomycin...why not Rocephin? What does the Vanco hit? what else are you taking?
Good for you for switching LLMDs...sometimes that is necessary. They all treat differently.
Posts: 3528 | From US | Registered: Apr 2007
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ByronSBell 2007
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posted
Vancomycin kills borrelia and bartonella. It is also more potent and is a newer drug.
Rocheprin is an old-school drug than is know to cause alot of side-effects when taken for a long time.
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ByronSBell 2007
Unregistered
posted
quote:Originally posted by Keebler: -
Byron,
Did you have a SPECT to show the vasculitis? If so, did the stuff injected work out okay ?
-
Yes, everything went smooth as glass.
A Spect Scan is a very helpful test, especially when the radiologist is lyme and bart. litterate like mine was.
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just don
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Member # 1129
posted
Byron,
You KNOW i wish all the best for you!!
When they cut my IV's off(insurance) they gave me a couple days of vonco,,,never felt better before or since,,It quickly returned with vengeneance.
Looking back maybe the vanco was beating the bart down. Didnt realize I had it then.
Course 2 doses sure dont make a treatment to rid of it.
It is regarded as abx of last resort,,,my RN daughters said it should be saved for life threatening circumstances,,,guess they dont realize how close to dead I feel!!
Its a great drug,,,go for it,,hope it works as well for it as for ME!!(tho too short for lasting effect)
Maybe ask for some rifampin or levaquin after your done with it so the bart is knocked down and out!!
I think ALL people discount the probablity of bart all too much,,and treating it FIRST is imperative!! I learn too late ,too little!!remaining --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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It's so good to hear you sounding so hopeful! I know that in the past, things have looked much darker. We are all pulling for you!
Did you get your SPECT scan at the clinic where you're getting treatment? Our new LLMD has recommended that my husband get a SPECT scan, so I'm starting to research where to go.
Hang in there, and looking forward to hearing more about how things are going.
Viva
Posts: 532 | From southeast US | Registered: Oct 2005
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Would someone pm me with Dr. R name and contact number. Thanks. Hiker53
P.S. I'm praying for you Byron as I do for all members of Lymenet.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8885 | From Illinois | Registered: Aug 2004
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Byron... Let's hope this works!! Keep an eye on the yeast beast, OK?!
Rocky, Rocky, Rocky!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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ByronSBell 2007
Unregistered
posted
quote:Originally posted by viva: Byron,
It's so good to hear you sounding so hopeful! I know that in the past, things have looked much darker. We are all pulling for you!
Did you get your SPECT scan at the clinic where you're getting treatment? Our new LLMD has recommended that my husband get a SPECT scan, so I'm starting to research where to go.
Hang in there, and looking forward to hearing more about how things are going.
Viva
I got my SPECT scan at a near by hospital to her clinic that Dr. R likes to use and she likes to use a special radiologists just for her patients spect scans...
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ByronSBell 2007
Unregistered
posted
quote:Originally posted by Lymetoo: Hiker.. I think I have it. I'll PM you.
Byron... Let's hope this works!! Keep an eye on the yeast beast, OK?!
Rocky, Rocky, Rocky!!
I've got the yeast problem well undercontrol. My recent yeast test showed no yeast in the body...
**to let everyone know, 2 women have gone/are going home this week** They are moving on with their lives...
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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ByronSBell 2007
Unregistered
posted
I was quite surprised about the yeast level, and also my heavy metals test were really low. The only thing I have a small amount in me is the big
Uranium!
The U.S. goverment has to take control of these kinds of things. When my Dr. decides to chelate it. It has to go in the hands of the U.S. government.
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Byron, I have been wondering how you were doing with the new doc. I'm so happy for you. Let's hope this treatment gives you some relief.
Keep us posted!
Posts: 1366 | From Southeast | Registered: Sep 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Any clues where the uranium came from??
Does that make you glow in the dark??
How do they test THAT???
Is that a water bourne thing,or soil contact item?? is it LIKE radon where naturally occuring gas??
How do they chelate THAT one??wonders --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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ByronSBell 2007
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posted
quote:Originally posted by Boomerang: Byron, I have been wondering how you were doing with the new doc. I'm so happy for you. Let's hope this treatment gives you some relief.
Bugg
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posted
I've heard great things about this LLMD as well...Hope she helps you turn the corner...Good Luck!
Posts: 1155 | From Southeast | Registered: Oct 2005
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ByronSBell 2007
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posted
quote:Originally posted by Bugg: I've heard great things about this LLMD as well...Hope she helps you turn the corner...Good Luck!
4 more patients are going home this coming week.... 4 more lymies with their lives back, they are having a party this friday but I think I will be too ill to go. I'm happy for them.
posted
That's great you're able to have aggressive treatment.
How long did it take for those patients you mentioned to reach treatment end point?
How is the clinic set-up? Is your home near the clinic? Are you staying at a motel?
Posts: 655 | From USA | Registered: Sep 2007
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ByronSBell 2007
Unregistered
posted
Things are very rough still boomerang, I am in a non-stop herx that is pretty bad
(Severe headache, nausea, full body muscle and joint pain, fatigue, eye/ear pain, and insomnia.
Those patients that left the clinc where here for anywhere between 4-6 months and are now on orals for 6 months or so to prevent relapse. They will return at that time to do all new blood testing and see if the diseases are gone.
I have to rent an apartment 15minutes away from the clinic, you go twice a day, everyday of the week. I am in there with about 20-30 other chronically ill lyme paitents.
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posted
I personally wouldn't rely on testing to tell me if I have yeast. Really wouldn't!
Just make sure you eat right. You may get by with doing that and taking good probiotics, which I'm sure you are doing.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
This is impressive....a chronic Lyme clinic! Are all the patients Lymies or are there other illnesses there as well?
Posts: 3528 | From US | Registered: Apr 2007
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I am saying a prayer for you that you see light at the end of the tunnel . ( I wish I could get the treatment uou are getting ! )
LYMETUTU , is on the mark and I hope you take probiotics religiously ( good probiotics ) or the gut suffering ( PAIN!) can literally blindside you out of nowhere . Also , the good bacteria enhances your immune system's attack on your enemies and will make a difference in progressing .
posted
I'm new to all this but your treatment plan sounds incredible, as well as the clinic.
Best of luck to you. I hope one of the farewell parties they have there will be for you soon!
Posts: 345 | From East Coast | Registered: Apr 2008
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-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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ByronSBell 2007
Unregistered
posted
quote:Originally posted by cjnelson: Wish I could do this....
does vanco work on cysts??? No. you said it does cross bbb??? Yes. less side effects??? At the beginning it can cause itchy skin and flushing but with a litte benadryl and a few days on it, it will go away
posted
So based on research it does not penetrate the intestinal wall in oral tx so it has to be IV - is there IM yet? Do you think it will ever be?
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Thanks for the update, Byron. So sorry to hear you are having such a rough time right now. Hopefully you will start feeling some improvement soon.
Sounds like a terrible herx you are having.
Keep us posted!
Posts: 1366 | From Southeast | Registered: Sep 2005
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Great to hear such a comprehensive approach. What diagnostics does this clinic use to diagnose, and more importantly EVALUATE the progress of treatment?
Posts: 690 | From East coast, USA | Registered: Jun 2006
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posted
I found vancy in IM form!!!!!!!! WOW!!!!! It is expensive but they do have it....
Byron, what is the proposed regimine plan for you?
How long on vancy at this dosage and then waht???
Also on glu something or another, LOL, will research that one...but what does that heparin do for you??
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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ByronSBell 2007
Unregistered
posted
Too many questions to answer at this time, I feel like a hunk of crap from the severe herxing. Maybe later
Alot of the questions can't be answered until the end of my treatment. There is no set regime, it will change as needed.
posted
yes, came across same info on pill form - it does not pentrate intestinal wall!
but I did find IM form!! So it is not just IV!!!
Lymetoo...
thanks, did last eve...interesting!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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AZURE WISH
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Member # 804
posted
hope you feel better soon byron . and that your going home party isnt too far off.
posted
Would like to hear an update Byron. I have a friend inquiring about the clinic you have been using so I went digging up old threads. I hope you have experienced some kind of improvement by now...
Be Well-
-------------------- "You play the hand you're dealt. I think the game's worthwhile."
C. S. Lewis Posts: 36 | From Illinois | Registered: Jan 2008
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lymielauren28
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Member # 13742
posted
Yeah!! Where in the world IS Byron?!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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luvs2ride
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Member # 8090
posted
Byron posted a humorous post as recent as 12/19, so he is still around and feeling good enough to make jokes.
Come on Byron! Give us an update on your treatment and the clinic.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I have switched to Dr. R's Lyme and Chronic Illness clinic in Kansas City.
Hello, Byron. Wondering if you can provide an update - specifically with the KC doctor and your treatment of vasculitis. We are trying to find a doctor in the Midwest. I'm not sure who you are referencing. My teen daughter also has vasculitis and we can't find anyone to help. Have you had success in the vasculitis treatment? (She has Lyme and RMSF, but only symptom is vasculitis)
-------------------- Ton Mc Posts: 11 | From IA | Registered: Oct 2022
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hiker53
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posted
The Kansas City doctor that Byron saw, Dr. Carol Ryser lost her physician's license. I believe she is recently deceased.
They got her on tax evasion, but she was a huge fraud and ripped off thousands of her patients.
I went to see her and could tell right away she was terrible. I saw her in September and she told me she would call me on Christmas Eve with my test results.
I threatened her with a lawyer and lo and behold I had my test results in October.
I do know that she used bromelian as part of her protocol but she wanted all treatment to be done at her clinic and wouldn't explain the rest of the treatment to me because I couldn't move to Kansas City as I had a job and was working.
She would not share her treatment plan with my regular LLMD--Dr. C in Missouri as she didn't want to lose patients or money.
Byron, I believe, was kicked off Lymenet for abusing the rules. He was not well at all when I saw him at the clinic when I went to see the Dr.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8885 | From Illinois | Registered: Aug 2004
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