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....
Posted by CherylSue (Member # 13077) on :
Best of luck to you Byron. BTW, what is vasculitis?
Wishing you well, CherylSue
Posted by kitkat32 (Member # 9682) on :
Good luck Byron.
I hope this treatment really works for you.
Hang is there through the herxes..I know it's tough but you can do it.
kit Posted by ByronSBell 2007 (Member # 11496) on :
Vasculitus is restriced blood flow to the brain.
Posted by kelmo (Member # 8797) on :
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.
Posted by feelfit (Member # 12770) on :
Best to you Byron! Keep us posted. I hope that you are soon rid of that nasty headache and nausea!
Feelfit Posted by ByronSBell 2007 (Member # 11496) on :
can't wait to be well....
Posted by Keebler (Member # 12673) on :
-
Byron,
Did you have a SPECT to show the vasculitis? If so, did the stuff injected work out okay ?
-
Posted by CD57 (Member # 11749) on :
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.
Posted by ByronSBell 2007 (Member # 11496) on :
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.
Posted by ByronSBell 2007 (Member # 11496) on :
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.
Posted by just don (Member # 1129) on :
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--
Posted by viva (Member # 8183) on :
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
Posted by hiker53 (Member # 6046) on :
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.
Posted by Lymetoo (Member # 743) on :
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!! Posted by ByronSBell 2007 (Member # 11496) on :
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...
Posted by ByronSBell 2007 (Member # 11496) on :
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...
Posted by Lymetoo (Member # 743) on :
Good for you, Byron!! That's awesome!
Posted by ByronSBell 2007 (Member # 11496) on :
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.
Posted by Boomerang (Member # 7979) on :
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!
Posted by just don (Member # 1129) on :
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--
Posted by ByronSBell 2007 (Member # 11496) on :
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.
Keep us posted!
Will Do.
Posted by Bugg (Member # 8095) on :
I've heard great things about this LLMD as well...Hope she helps you turn the corner...Good Luck!
Posted by ByronSBell 2007 (Member # 11496) on :
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.
[ 21. May 2008, 08:31 PM: Message edited by: ByronSBell 2007 ]
Posted by Boomerang (Member # 7979) on :
How are things going for you, Byron?
Posted by yanivnaced (Member # 13212) on :
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?
Posted by ByronSBell 2007 (Member # 11496) on :
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.
Posted by Lymetoo (Member # 743) on :
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.
Posted by CD57 (Member # 11749) on :
This is impressive....a chronic Lyme clinic! Are all the patients Lymies or are there other illnesses there as well?
Posted by ByronSBell 2007 (Member # 11496) on :
Thats why this places success rates soar above the average llmd.
Posted by laurie sm (Member # 14584) on :
Byron- I hope and pray that you get better!!!! How did you find the clinic and where is it?
I have been sick for one year and still searching for the correct way to treat this awful illness...
Can you post this info. when you are feeling up to it?????
I would go to the end of the earth to feel better.
Laurie
Posted by laurie sm (Member # 14584) on :
Byron-I just re-read your first post and see you are in Kansas City.
I hope you are doing okay with the Herxing. Good for you for taking charge of your illness.
I feel like each LLMD has a piece of the puzzle but not enough to make us better.
LAurie
Posted by Annxyz (Member # 9097) on :
byron,
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 .
Blesssings to you byron!
Posted by not so sublime lyme (Member # 15185) on :
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!
Posted by cjnelson (Member # 12928) on :
Wish I could do this....
does vanco work on cysts???
you said it does cross bbb???
less side effects???
so whats the catch, LOL!!
Posted by ByronSBell 2007 (Member # 11496) on :
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 by cjnelson (Member # 12928) on :
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?
Posted by Boomerang (Member # 7979) on :
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!
Posted by Blackstone (Member # 9453) on :
Byron,
Great to hear such a comprehensive approach. What diagnostics does this clinic use to diagnose, and more importantly EVALUATE the progress of treatment?
Posted by cjnelson (Member # 12928) on :
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??
Posted by ByronSBell 2007 (Member # 11496) on :
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.
[ 02. June 2008, 11:44 AM: Message edited by: ByronSBell 2007 ]
Posted by laurie sm (Member # 14584) on :
Byron- Thinking of you and knowing what it feels like to feel like a hunk of crap....
Hoping you will see the light soon....
Laurie
Posted by Lymetoo (Member # 743) on :
cj.. Do a search here on heparin. Its benefits have been discussed a thousand times + one.
MomfromTX is right on her info.
Byron.. feel better!! Posted by cjnelson (Member # 12928) on :
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!!
Posted by AZURE WISH (Member # 804) on :
hope you feel better soon byron . and that your going home party isnt too far off. Posted by WillBDone (Member # 14269) on :
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-
Posted by lymielauren28 (Member # 13742) on :
Yeah!! Where in the world IS Byron?!
Lauren
Posted by luvs2ride (Member # 8090) on :
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
Posted by Ton Mc (Member # 52653) on :
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)
Posted by hiker53 (Member # 6046) on :
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.
Posted by Lymetoo (Member # 743) on :
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