For those of you that don't know, I have been at a lyme disease clinic that uses the strongest and most detailed treatments that I know of in the U.S.
My treatment over the last 3 months has been:
IV Vanco 1g 2x's a day, everyday of the week for 1.5 months
IV Doxy 1g 2x's a day, everyday of the week for 1.5 months
IM Bicillin 1x's a week at 2.4
I have also been on 4cc's of heparin a day, lots of supplements, IV antioxidants, Bio-feedback, diet, and light excercise.
The results:
1. All hormones are now normal. 2. My muscles were wasteing, now they are rebuilding. 3. All of my vitamin levels are now normal. 4. Inflammation levels have fallen 5. My first CD-57 test was a false high due to strep infection, now the strep infection is gone and my CD-57 is a 158. 6. My Fry Labs has improved by 70%, bartonella is about to see its final days. Here is the picture:
As you can see, the Bio-film is 85% gone. The bartonella is also outside the cells now so the immune system and ABx can get them. My cells are also looking alot more healthy than before. My first Fry Labs, I did not have one single healthy cell in the smear.
Symptom Improvements:
Low Body temp is gone Circulation is back to normal Joint pain is decreased I fall asleep at night more easily My color is better Muscles are building back up
Headache's, nausea, muscle pain, eye symptoms, ear fullness, and several other symptoms have not improved yet, but I have been in a chronic herx ever since starting treatment...
I use to be a believer in taking a slow approach with the ABx's by taking smaller amounts and backing off when I start herxing, but obviously as you can see my progress in my blood work over the last 3 months, that going after this disease with harsh treatment and not backing down is the way to do it. "No pain, no gain" I have had alot of pain but alot of gain in 3 months.
I still have a long ways to go because my lyme levels are still high but my LLMD was going after the Bartonella mostly, first.
I will be starting IV Primaxin, tinidazole, and Ketex next week, and I have to get ready for some serious herxing.
Good things are happening here at the clinic, since my last post, several more people who have been sick all their lives are going home as new people and moving on with their lives. Keep the faith.
I will post another update in 3 months...
Posted by Boomerang (Member # 7979) on :
Wonderful news, Byron!! Thanks so much for the update. It's so encouraging to read that you are making good progress.
Posted by hokie (Member # 14720) on :
Congratulations! Hope you continue to see that rate of progress; it's amazing.
Posted by feelfit (Member # 12770) on :
Way to go Byron!
finally Hope!
feelfit Posted by pab (Member # 904) on :
I'm so happy to hear you are getting better. Do you stay at this clinic?
Posted by ticked-offinNc (Member # 15420) on :
BYRON....I am so proud of you!!!!!Great job! I am excited for you!Yeah.
Posted by Angelica (Member # 15601) on :
Keep up the good work and congrats on improving your health!
That is very interesting about strep causing a high CD-57. What was the number on your false CD-57 and did your LLMD tell you strep can cause a false test?
Posted by ByronSBell 2007 (Member # 11496) on :
quote:Originally posted by Angelica: Keep up the good work and congrats on improving your health!
That is very interesting about strep causing a high CD-57. What was the number on your false CD-57 and did your LLMD tell you strep can cause a false test?
Yes, if you have strep your CD-57 will be messed up. The problem is... alot of LLMD's don't even test to see if you have strep and if you do, they don't know that it can cause your CD-57 to be false high.
Alot of people with lyme that think they have a good CD-57 actaully don't...
Posted by ByronSBell 2007 (Member # 11496) on :
quote:Originally posted by pab: I'm so happy to hear you are getting better. Do you stay at this clinic?
I live in an apartment aout 10 min. away but I am at the clinic atleast 6-7 hours a day.
Posted by Lymetoo (Member # 743) on :
That's great!!
What fixed your hormone levels? The abx?
Posted by ByronSBell 2007 (Member # 11496) on :
quote:Originally posted by Lymetoo: That's great!!
What fixed your hormone levels? The abx?
Probly the bartonella population being down and the Biofeedback is what did it.
Posted by Vermont_Lymie (Member # 9780) on :
Congratulations, that is great news, and I am happy to hear that you've made such good progress. Please keep us posted and wishing you better & better health.
Posted by kelmo (Member # 8797) on :
Byron, this is wonderful news.
Kelmo
Posted by Hoosiers51 (Member # 15759) on :
Does strep have any sort of "relationship" with Lyme? Because I believe I have "chronic strep." I will show just a few small symptoms, nothing out of the ordinary for me, but my IgM will come back positive.
I told an Ear-Nose-Throat doctor it would be positive, he said it won't (but tested me to try to prove he was right) then it came back positive and he called me, flabergasted.
Basically, is there anything you all do to treat it? Do I need to get rid of it, almost like its a coinfection? I have been on plenty of abx.
Thanks!
Posted by ByronSBell 2007 (Member # 11496) on :
Hoosiers...
Strep is like mono, you can get sick with it then get better but the infection will always be in your body. Your immune system just keeps it down.
Well, when you get infected with lyme, alot of infections your body previously had will gain strength and come back. So I have been on weekly high dose Bicillin shots for it to knock it back down.
Posted by Hoosiers51 (Member # 15759) on :
Okay....I'm on Amoxy with a bunch of other things, so hopefully that is working.
I just remember hearing of some German doctor who believed strep had to be "addressed" in Lyme patients. So many things to think about!
I may be switching from Amoxy to Bicillin at some point. Anyways, good luck with your treatment, Byron.
Posted by Parisa (Member # 10526) on :
I'm happy to hear that you finally found something that would work for you. Thanks for posting.
Posted by Angelica (Member # 15601) on :
What is the best treatment and test for strep?
I had many strep throats as a child and my CD-57 score was high. It was ordered by Mr. CD-57 himself. He neglected to tell me strep or coinfections might have made my score high. He told me I had a great immune system in regards to LD. I wish he was right.
Posted by KaitlinB (Member # 11718) on :
Byron,
I am so happy that your treatment is working for you. Thanks for the update and please keep us posted.
Posted by ByronSBell 2007 (Member # 11496) on :
quote:Originally posted by Angelica: What is the best treatment and test for strep?
I had many strep throats as a child and my CD-57 score was high. It was ordered by Mr. CD-57 himself. He neglected to tell me strep or coinfections might have made my score high. He told me I had a great immune system in regards to LD. I wish he was right.
Bicillin helps the strep but it has to be done over a long period of time until your immune system is on top of things... I still have about 14 weeks to go on bicillin injections and have been on them for 10 weeks already. There is also some supplements that help, like Transfer Factor.
I think the blood test was through LabCorp or Hemex, I can't remember which one... I will have to find out
Posted by Alv (Member # 15192) on :
HI BYRON!
I am so happy for you !
Please tell us is your insurance covering all teh exspenses or do you have to pay from out of pockets ?
How about other people that are not living around there as you just happened to be the lucky ones?
How do they solve that problem..
YOu make my heart happy!
MY CONCERN is my son.I want him to have his life back ....BART is his MAJOR problem !
If you need to PM me than please do ..So I can keep my hopes high for him.
Posted by Alv (Member # 15192) on :
Also another question.
I can not recall if you have HEMOBART/MUCO spp on FRY lab or JUST bartonella as findings.
Can you please let me know?
The question is more about if you have " THE MYSTERY BUG" and vancomycin is working !
Posted by Rianna (Member # 11038) on :
Wonderful news
I am on a similar protocol to you but was trained to do all my I.V.treatment at home (presently on IV Rocephin and IV rifampin).
I also think that IV for patients like us is the way to go of course with Heparin and IV glutathione/antioxidents
Afer 3 months on treatment and 7 years in total I have gone from housebound to being out every day - I have even been on short holidays and can now see and interact with friends.
So yep we are both on the right road now
Keep up the good work
Rianna
Posted by METALLlC BLUE (Member # 6628) on :
Did you tell me about this clinic and give me a patient report before? I have two clinics in Tenn. What has been your overall experience, the treatments, the staff, cost, insurance, etc? PM?
-- Mike
Posted by treepatrol (Member # 4117) on :
Iam with you I never backed off on a herx either. I have been poff abxs etc since beginning of march. Feel pretty good one thing I can tell you that has helped me is B12 injections every fourth day. And the minocin I was on at higher doses the last 6 months after the babs treatment. One other thing was treating long enough that every cell in my body had been replaced its either 14 or 16 months the body replaces ebvery cell.
Posted by djf2005 (Member # 11449) on :
i have to ask this..
the blood smear looks better, but, cant that just be the sample of blood they took happened to not have a high population of the bugs in it? isnt that always a risk w/ the smears or any lab work? it can still be all over just not in the sample drawn?
most of the symptoms u list improved could be from heparin.
the majority of the real lyme symptoms though still persist?
i am glad you are feeling improvements in some areas and hope u are cured when you go home.
please continue to update us.
btw byron, can u give us a ballpark cost on what u have spent so far and plan on spending by the time youre done?
also, is ins covering all the IVs? how are you paying for everything?
thanks
derek
Posted by ByronSBell 2007 (Member # 11496) on :
quote:Originally posted by Alv: Also another question.
I can not recall if you have HEMOBART/MUCO spp on FRY lab or JUST bartonella as findings.
Can you please let me know?
The question is more about if you have " THE MYSTERY BUG" and vancomycin is working !
Fry labs found my smears to be consistent with hemo-bart, but my LLMD treats all the bart's very similar, except for the ones that come from outside the country.
Posted by ByronSBell 2007 (Member # 11496) on :
quote:Originally posted by Alv: HI BYRON!
I am so happy for you !
Please tell us is your insurance covering all teh exspenses or do you have to pay from out of pockets ?
How about other people that are not living around there as you just happened to be the lucky ones?
How do they solve that problem..
YOu make my heart happy!
MY CONCERN is my son.I want him to have his life back ....BART is his MAJOR problem !
If you need to PM me than please do ..So I can keep my hopes high for him.
There are cheap apartments located literally walking distance from the clinic that alot of patients stay at but mine is about 10 min. away from it.
For insurace, my provider is Cigna. They covered my first 28 days of treatment and then stopped paying, but they have been covering some of the testing that is approved by the FDA and they are covering the bicillin shots.
So far I've payed around $20,000 so far but the staff here is great and they are willingto work with you in any way to help get you well, some of the poorest people come to this clinic and they can manage because they can offer you different ways to pay. I am paying $2,000 a week, if you pay weekly they discount for you instead of waiting to pay all at the end. Dr. R works atleast 12 hrs. a day at 6-7 days a week, she is not in it for the money, she's doing all of this to make a difference. She was originally a pediatrician and she loves kids.
Posted by ByronSBell 2007 (Member # 11496) on :
quote:Originally posted by METALLlC BLUE: Did you tell me about this clinic and give me a patient report before? I have two clinics in Tenn. What has been your overall experience, the treatments, the staff, cost, insurance, etc? PM?
-- Mike
The experience is good (besides the aweful herxing) The nurses are great, the financial staff is very flexible and helpful. It is also nice to be around 25 other lyme patients that have this same disease, it's fun to watch people get out of their wheelchairs, to see people getting their lives back and going home feeling much better, all the patients are also very supportive.
Posted by ctlyme (Member # 9022) on :
Glad to hear you are improving.
Does your clinic use Tygacil at all.
My Dr. is willing to use it but i have not heard enough feedback on this type of Abx.
Posted by ByronSBell 2007 (Member # 11496) on :
I'm not sure ctlyme...
Posted by kelmo (Member # 8797) on :
Byron, thank you for being so open with us.
We are watching your progress and hope there is no relapse afterward.
You've given hope to my daughter, and given her stronger motive to continue to push through the herx.
Posted by CD57 (Member # 11749) on :
I wonder if it's the IV Doxy that is working on your bartonella/BLO, rather than the Vanco? Has she/you considered that? The reason I say that is b/c Vanco does not affect gram-negative bacteria, and bartonella spp. are gram-negative. Doxy, on the other hand, particularly IV Doxy, has good blood/brain barrier penetration so could be doing the trick.
I would be interested if you could ask your dr why she is using Vanco. I think all our LLMDs would like to hear about this if it works. Thanks!
Posted by AZURE WISH (Member # 804) on :
Thank you for sharing your expereince.
congrats on the progress... i know you have waited a long time for it. Posted by ByronSBell 2007 (Member # 11496) on :
quote:Originally posted by CD57: I wonder if it's the IV Doxy that is working on your bartonella/BLO, rather than the Vanco? Has she/you considered that? The reason I say that is b/c Vanco does not affect gram-negative bacteria, and bartonella spp. are gram-negative. Doxy, on the other hand, particularly IV Doxy, has good blood/brain barrier penetration so could be doing the trick.
I would be interested if you could ask your dr why she is using Vanco. I think all our LLMDs would like to hear about this if it works. Thanks!
Yes, she uses IV Doxy to treat bartonella as well but, Vanco packs a heavy punch on bartonella even though bartonella is gram negative.
It's just like alot of other ABx, like who would have ever thought Flagyl would kill the cyst form, or plaquinil.... Who would have ever thought antibiotics can be successful on parasites and some parasite meds are successful on lyme. You just do what has shown to work....
Posted by Cass A (Member # 11134) on :
Go for it, Byron!!!!
Best,
Cass A
Posted by Alv (Member # 15192) on :
Thanks SO much BYRON!
You are right!The DOXY is antiinflamatory and the VANCO with combination with azithr has been mentioned from DR.J S that has worked...
ALONE DOXY does not!Flagyl works on cyst ( works on both bugs and parasites also -TRUE) as well as I have mentioned in some posts.
I have also have noticed that it makes a HUGE diference on the bart SPP ..from my eksperience. BYRON you are giving me hopes that at least after my son has still chances.
YES it is really GREAT to see people that get up from wheelchairs and move on in life.
I just hope that they can really move on with no relapse end getting back to the clinic in the year or so .
Posted by painted turtle (Member # 7801) on :
Byron,
Thanks for sharing your process and progress.
I also see Dr. R and have nothing but positive things to say about that.
But I was not able to swing the whole diving into treatment thing and I was infected for 30 years before diagnosis so our approach is a little different and outcome seems to be less favorable for people like me!!
However, I have all the faith in Dr R to know what to do for each individual case and I also like the comprehensive approach. Dr R is a very smart one who thinks out of the box.
I commend you on your willingness to dive in and go all the way. I hope you see one hundred percent health regained and that you continue to share your journey with lymenet.
painted T.
Posted by ByronSBell 2007 (Member # 11496) on :
quote:Originally posted by Alv: Thanks SO much BYRON!
I just hope that they can really move on with no relapse end getting back to the clinic in the year or so .
From what she told me, she is able to keep anyone from relapsing... the only one's that relapsed were the ones that demanded they end treatment eary because they felt alot better.
Posted by CD57 (Member # 11749) on :
Alv--vanco with ZITH works on bart? Or would that by LYME?
I don't think Byron is taking Zith with his vanco, are you Byron?
Posted by ByronSBell 2007 (Member # 11496) on :
quote:Originally posted by CD57: Alv--vanco with ZITH works on bart? Or would that by LYME?
I don't think Byron is taking Zith with his vanco, are you Byron?
Did not take any other ABx while on vanco except IM Bicillin
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