richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
James,
This has to be TBD related. Never have I ever had any of these symptoms in my life. Then I get hit like a ton of bricks with all these things at once.
My doctor feels I have quite a bit of Babs, based on all of my positive tests but no I have no fatigue. They also feel I have lots of Borrelia but they don't feel they can recolve that without getting the Babs. We are waiting for a negative Babs test. I keep waiting.
I have had every test under the sun. Every doc I see says your pain and symptoms in that arm must be TBD related.
I used to bench press 325, now I can't do a push up. I have guys at my gym in their 60s and 70s doing much more than me now and still prgressing, pain free! They look at me like a 100 year old man now.
James, keep in mind - everyone is different. You could have a friend with more Lyme than you or I...but with no symptoms. By the way, I did become anemic. Red blood cells are back up a bit now to normal range. I have read that some people can have a large Babesia load, but with little to no symptoms......so a lot of my pain could be attributed to Borrelia or Bart.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I did 7 weeks of doxy back in April. This was through my primary care physician.
I started feeling much better after 3-4 weeks. And this was not a new case of lyme. I was under treated with 3 weeks of doxy in 2007(and 2002, as well as 2006).
Started with my llmd in August. On zith and Cef since then and babesia is now showing itself(after negative test results in August).
MUCH improvement since August though with the cef and zith, even having some fairly "normal" feeling days. More bad than good, but the good feel SO good.
We shall see how this babesia treatment goes. I'm very nervous to be starting Mepron this evening.
So, I guess you could say 7 months of antibiotics, with a little break in between.
Who knows how much longer, but so far, the plan seems to be working.
I almost feel as if I could start up my walking and weight lifting regime once again. Almost.
Posts: 423 | From Upstate NY | Registered: May 2009
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
I just reached the two year mark on abx yesterday. I am 85% better. I was 99.9% better after treating bart but I stopped and it came back.
i am also fighting C diff. But, will be treating bart again starting Wednesday and then back to treating c diff. I hope this will be m y remission.
Posts: 1104 | From N.California | Registered: Jan 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Only 191 posts in 23 months and nearly in remission? Stop being quiet and tell us your magical secret? That's what I meant about silence hurting us as a group sometimes. I'm amazed how few posts some have here. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Wow. Nice stories.
Love to hear when someone says they are ready or even almost ready to start weight living and walking! Nice.
Also..85 and 99.9 percent better!! whoooo hooo..
Oh.. BTW. what do you use for Bart Treatment.?
I hope you get back to 99.9 percent soon.
Gosh I am due>! I got to my highest spot in 2007 of about 75 percent of normal 100 percent.. and then i relapsed in 2008 and I am now back down to.... 30 to 50 percent of normal.
It kinda gets confusing to know what people are saying for sure because for example. If i am sick and functioning at 40 percent... and i then say I am 50 percent better. Well that would mean maybe that I take 1/2 of the 40.. Hence 50 percent. Then it could mean I am now at 40 plus 20 which equals 60.
Maybe its the math person in me.. and everyone who types 50 percent better means.. they are functioning at 50 percent of their normal 100 percent.?
OK did I confuse you all now. LOL.
Anyway.. Sometimes I am not sure and I also think I have confused and have had to clarify to my doctors what I mean..
when i say I am 100 percent better and I started at 20 percent of normal.. Well that only takes me to 40 percent of normal. So I have had to make sure I word it right or they start thinking I am 100 percent well and 100 percent normal.
When that is NOT near the case.. : )
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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I can never answer the "what percent better are you" question, for a couple of reasons.
First, because of getting sick, I quit smoking/drinking and started eating better and exercising (as able). So, once I'm over my Lyme and co, won't I feel better than I did before I got sick?
I know that a lot of us become more health conscious, so I think this applies to many.
Second, I've been sick for years. I've honestly lost track of what my healthy baseline even is! My Lyme progression was insidious, and I passed off minor symptoms as stress or age.
At this point, I don't even know what a fair 100% comparison feels like anymore. Again, I think many are likely in this boat. I bet we underestimate what a good 100% feels like simply because we've forgotten.
Plus, for me, often as one symptom relents, another pops up or gets worse, like a game of "whack a mole." So while my heat sensitivity may be much better, my joint pain is worse.
OK, now I'm confused, too.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
7 years for lyme and babesia. Took three months off this summer to do bionic 880 and relapsed pratcially back to the beginning. Now on antibiotics again.
Have have seen many of the country's best llmds. I do not believe that a cure is in my picture at this point in time.
Antibiotics are the only way I'm going to get through.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
The Bionic 880 was completely useless for you Mary? How depressing to hear that. I hope you get back on track. It's mind blowing SixGoofykids, Scott and others had blazing success and it didn't do squat for you. I wonder why.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Thank you, everyone, for sharing your stories.
It is inspirational to read the strength that you all have in battling these infections, whether it be several months for some or several years for others.
I pray that you all find complete remission at the end of your journeys!
Posts: 648 | From northeast | Registered: Feb 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I was diagnosed with lyme and started doxy Feb 2008. Two months later I quit when I had to take a business trip and was so sun sensitive I could not tolerate any exposure. A couple of weeks and I relapsed and went on Ketek as Burrascano says in his protocol it is best. After two months I began to get raging headaches, cut the dose back but had to quit. I was much better, almost normal, and I went on Zhang's herbs for five months, then relapsed again. Went on doxy until I could get to the LLMD who diagnosed me with borellia and bartonella. I was then on levaquin for five weeks which gave me tendonitis. I could not tolerate any drug at that time and went back on Zhang. I took up to 20 HH capsules and was doing ok for five months, then relapsed again. Now I am on rifampin and zithromax, left over from last year. So in the last 21 months I have had about 10 months of abx.
You might want to ask for an estimate of what people have spent to get well. In the last year I have spent about 7 thousand dollars and am right back where I started.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
nefferdun,
Did your tendonitis go away?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
What about againg? Alcohol ages you. I am sure drugs can age you. I notice I have looked like I have aged rapidly in the last few years.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Weaning off after 3 years..feel 90% of normal. I weaned off last year-well, I actually quit cold turkey and had a mild relapse 3 months later. Now I'm pulsing and doing fine
Oh, I see the same Dr as TF, but he's kept me on for 3 years.
Posts: 1276 | From maryland | Registered: Jan 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That doc gets everyone better! 1 yr / 3 yrs - I'll take whatever since the lLMD seems to put everyone in remission! Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I've spoken lately to many people who have been told by their doctors that the minimum treatment will be 3 years, and they were told that that is with aggressive meds and dosages.
It is hard to hear that. It is hard enough to think abx for a year, let alone year after year.
This is very frightening and demoralizing to think about in regard to my child; however, if it has to be, then so be it.......I'm not sure I'll be able to keep my child on abx for that long a time, but I never thought when starting out on this journey that we'd be on them for as long as we have already, which really isn't very long in comparison to many of you, so I'm sorry for sounding whiny right now.
Decisions, contradictions, and re-evaluations of one's ideals are made daily in this fight.
My child's LLMD hasn't ever given us a minimum or maximum length of treatment, which is frustrating in a different way.
I do believe though that everyone's battle is different. There are just so many variables. Meds and length of treatment have to be adjusted individually.
I hope my child's treatment can end sooner versus later--don't we all--but more importantly I want her well with no relapses in the future.
I wish this was all behind us already, but I think you're all stuck with me hanging around for awhile longer.
Posts: 648 | From northeast | Registered: Feb 2009
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Diagnosed in OCT 07 and started treating with ABX. I'm still on them. Went from my lowest functioning of 15% to 85-90%. I also switched LLMD's this fall. I have viral and mycoplasma issues we are working on now.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by seekhelp: That doc gets everyone better! 1 yr / 3 yrs - I'll take whatever since the lLMD seems to put everyone in remission!
What Doc? The same as TF? I tried to get in with him so i went with another doc nearby she also recommended. My doc said about a year to get better from her experience...but now she is seeing 1- 3 years!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yes, that doc. I couldn't get in either. Didn't want out-of-state patients. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by seekhelp: Yes, that doc. I couldn't get in either. Didn't want out-of-state patients.
Are you seeing that doc now? Shoot me an email or PM and we can compare treatments, etc.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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