posted
I am just trying to take a toll on how long you have been on abx...days, months and years?
I am asking this because i don't know if its cold or me being off of abx for about 3-4 weeks but all of my symptoms have returned with rage. I have been on abx again for the past two weeks but it isn't working like it used to in summer.
Thanks
-------------------- May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen. Posts: 341 | From Columbia, MD | Registered: Jan 2009
| IP: Logged |
posted
Since November 2008 and am told I will most likely have to be on for years to come :-(
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
| IP: Logged |
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Aug-08.
Jenny, who told you...years to come???
-------------------- 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
| IP: Logged |
joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Approx 3 1/2 years with a six month break at the two year mark.
I really hate supporting big pharma...
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Thanks for posting this. I was thinking of doing the same this am.
I recently stopped taking abx and went on a pill for yeast.
But, am going back on abx today and the supplements I was taking as not taking these things did not help either.
At least I had some good cycles while on abx, excedrin and supplements.
As to your question: I have been on the less expensive abx that insurance will provide since 2003.
So, I am interested in hearing if others have also had to be on them this long.
I don't like it. but, it seems not being on them is not an option yet either.
I also am one of those people who went from working full time one week to not even being able to do routine household chores, fix meals, read, write, do simple math much less work, walk, sit upright, etc.
Everyone is different so you can't go by me.
I also have not had the funds or the health to keep in contact with my lyme doc.
And during the last telephone consult his assistant suggested I try a couple of abx which the primary doc would not prescribe and I did not have the funds to pay out of pocket.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
posted
Well i go to the DR. B guidelines doc. It's been almost a year and i haven't even changed my abx protocal so far. I am where i started again. I have spent more than $1000 on the fee's i have no insurance and still i am confused of my diagnosis.
-------------------- May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen. Posts: 341 | From Columbia, MD | Registered: Jan 2009
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
since nov. 2007 for me....yipee!
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
sonee, maybe you are having a bit of a herx as you start back on abx?
I was on abx for 3 1/2 years, with a few breaks.
Had a great 6 - 7 mos off all abx, and am just starting back pulsing abx.
We are all different. The length of your treatment depends on many variables.
Which co-infections you have, the length of time you were infected before beginning treatment, your individual genetic make up, whether you are able to comply with doc's orders, and more ... all of these impact the length of treatment.
I go to an ILADS doc who follows Dr B's guidelines, one that is considered very, very good by many.
I'm not happy about being on abx this long either, but am happy that my MS symptoms have abated, that the fibromyalgia pain is a thing of the past, that I can walk again...
Hang in there, sonee, and I hope you start to feel better soon.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
posted
These are the exact symptoms as long as i can remember when i started to get in fall last year returning. EXACT. Those that i thought i left behind long time ago.
Now i am back where i started. It's really depressing and painful
-------------------- May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen. Posts: 341 | From Columbia, MD | Registered: Jan 2009
| IP: Logged |
quote:TF has said many times if you go to a GOOD LLMD who knows what they're doing, we can be off them in a year or so.
That is one of the most stupidly irresponsible statements I've seen here. If TF said that, it's ridiculous.
So, this means that if someone is on abx for more than a year or so, THEIR LLMD DOES NOT KNOW WHAT THEY ARE DOING??
By what basis does ANYONE here think they have the knowledge, experience, or education to say this? Not even Dr B would make that kind of blanket assertion. If you make this kind of statement you better be DAMN SURE YOU CAN PROVE IT. It directly challenges ILADS and it's guidelines.
Anybody who says this kind of thing is wrong AND irresponsible and are cut from the same cloth as the IDSA.
Lyme treatment depends on the individual's immune system, length of infection, and the STRAIN of lyme they have been infected with.
Do not EVER assume that it can be "cured" in any set amount of time!
James
[ 11-07-2009, 04:36 PM: Message edited by: JamesNYC ]
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
richedie, my LLMD told me this. He is very realistic about my situation. He wants me to get to the point where I will only need to take abx for one week a month (M, W, F) That is the goal for now. I have had this bacteria in my body for longer than I care to even think about and was only diagnosed in Nov. 2008.
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
| IP: Logged |
quote:Originally posted by sonee123: Well i go to the DR. B guidelines doc. It's been almost a year and i haven't even changed my abx protocal so far. I am where i started again. I have spent more than $1000 on the fee's i have no insurance and still i am confused of my diagnosis.
What is your protocol? And you saying you been on it for a year?
Posts: 856 | From MA | Registered: Jul 2009
| IP: Logged |
posted
I have been on Biaxin and amoxy since feb last year. No i have not changed meds at all. I am where i am from day one. He actually took me off of abx for a month and i got so sick that i started again 2 weeks ago.
-------------------- May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen. Posts: 341 | From Columbia, MD | Registered: Jan 2009
| IP: Logged |
quote:Originally posted by sonee123: I have been on Biaxin and amoxy since feb last year. No i have not changed meds at all. I am where i am from day one. He actually took me off of abx for a month and i got so sick that i started again 2 weeks ago.
Hmm that doesnt frankly sound Burascano like at all. Burascano is aggressive combination aimed at all forms and including cyst buster.
Posts: 856 | From MA | Registered: Jul 2009
| IP: Logged |
posted
Seekhelp, I'm not sure to whom your comment is directed, but here are my thoughts.
Results seems to vary so much from person to person. I've read here that the very med I credit for getting me to "turn the corner" was ineffective in others.
And I did/do a lot of things differently than other folks here. For example, I love food and could never stick to the Lyme diet in Dr. B's guidelines.
We're all probably battling unique combinations of infections and other issues. IMO, finding a doctor you trust and who is willing to adapt treatment based on your needs and responses is the way to go.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
| IP: Logged |
posted
I didn't ever mean to imply that I think you are a "stupid idiot," and apologize if that is how you interpreted my comment. I only meant to be helpful/encouraging.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
| IP: Logged |
posted
Except for 3 mos of doxy then end of '07 to beginning of '08, have been on aggressive treatment since Aug '08.
Right now, don't know if I'm having my first real herx, or just on too many abx. Not doing well at all.
Currently on Rifampin, Malarone, Minocyline, and Plaquenil 2x a day. Rocephin 2 grams IV 2x a day, 4 dayson and 3 days off.
Posts: 847 | From upstateNY | Registered: Dec 2007
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Since May 08 with a 3 month break. Still sick as a dog!
Seekhelp, you are right. If we could see what works for the majority, then that would be helpful for the rest of us. All LLMDs treat differently and all claim that their treatments work. I would like to see treatment results compiled in a way that we could see percentages cured with this type treatment vs another type.
Its crazy that we all have to suffer for years taking tons of antibiotics; blindly accepting that if we keep it up, we will get well. But then what is one to do? I'm sure not giving in or giving up.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
quote:I really did not mean this to be an arguing post. I was just trying to make the point a very seasoned member here has posted many, many times that the doc is the key to wellness.
IF TF said that a good Dr should have someone cured in about a year, TF is WRONG. And that comment needs to be challenged.
Oh, so MY LLMD must not know what he's doing since I've been treated over a year and I'm not cured? My brother also should go to a new Dr since he's been on abx for over 2 years and is, like, 90+% back to normal? But the TF standard shows his Dr is a poor one?
What exactly ARE you saying here? Why does what TF supposedly said set the standard? And do YOU advocate firing any Dr that hasn't cured one in about a year?
I find your whole premise antagonistic.
The real question is: HAS TREATMENT MADE YOU BETTER?
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
posted
That's what I wanted to know...Has treatment made you better. Seems most every post here gets sidetracked with a bunch of bickering.
Posts: 847 | From upstateNY | Registered: Dec 2007
| IP: Logged |
posted
dec 08 doxy for 4 months iv rocephin the rest.
its unbearable on drugs. im just living to live.
-------------------- Fighter Posts: 24 | From smithtown, ny | Registered: Jan 2009
| IP: Logged |
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by seekhelp: TF has said many times if you go to a GOOD LLMD who knows what they're doing, we can be off them in a year or so. Pay special attention to this and ONLY go to Dr. B-type docs is the message.
Yes, I have talked with TF. I go to a Dr. B doctor she recommended. Great doctor but I am going on 1.5 years and still in hell. Everyone is different. They also think I had it since I was a child.
If anyone thinks LLMDs are in this for the money, are off their f*&*$# rocker. Most of these doc's used to have the standard, run of the mill practice till either they themselves had Lyme (and coinefections) or a family member. They then realized how difficult it is to get the correct treatment. They said F the system, I am going to help others with this disease and many of them do a great job in getting people better.
I know some LLMDs that almost went broke trying to get family members well from Lyme. If anything, they are brave and pioneering...unlike your average cowerdly MD in this country - hiding behind insurance companies, lawyers, the CDC and Big Pharma. Doctors in this country do not have to think, they just do as they are told, regurgitate the garbage they learned in school.
Med school curriculum has a lot of which is written by Big Pharm and Insurance companies -it is much easier for them to control their mindless doctors this way. I like that these LLMDs actually think! Yea, a doctor that thinks and is human and will treat a patient as an individual.
The last time I went to a regular doctor, he snuck a flu shot into me when I didn't have a chance to say no. He gets his kick-back that way! I almost punched him in the face and then I walked out. I was ready to grab the needle and give him a shot.
However, these doctors practice in fear because they know they are outside of the standard procedures of the large governing bodies that provide the Kool-Aid.
I will never again go to a doctor who accepts insurance, EVER again - even after I am better. I won't play into that system again. Regular docs do not have the time to give a proper diagnosis because the insurance companies have far too many guidelines which also dictate the time you can spend withh a patient.
Oh, and I have kept in contact with some of my doctor's other patients. Some are still sick but some are well and have been discharged. Everyone is different. Standard Docs make a lot more money because they se soooo many more patients in a day.
-------------------- 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
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I get confused about what the big deal is about insurance or not insurance for LLMD doctors.
In the end it is only the office visits you will pay for right??
So if you have insurance you can still go to a doctor who does not accept insurance and get your labs and meds covered (if you have that coverage).
Right>>??
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Rich.. oh my! You are rather powerful in what you are saying... but..
I agree!
Our docs do NOT do this to make money.
Seek, seek, seek....
Sometimes I wonder about you. HA!
You said... "This is where we need candid treatment protocols listed, patient info, success rates in a central place to arm patients with real results."
If we do this... we will not have LLMD's. It is up to US to protect our doctors and respect the patient doctor confidentiality stuff.
If our docs were doing the IDSA protocol, what is "main stream" and accepted practices... we could share... and if we shared...
We'd soon learn that it doesn't work and we are all still sick!
Been there, done that.... and THAT is why we have LLMD's trying different things to help us.
Listen to me dear seek, listen carefully.
There is NO cure for Lyme disease. Period. None. Notta.
And how do I know this? Because we have NO test to prove it has been totally removed from our bodies... and we have study after study showing it remains after most of the currently available treatments. AND...
There has never been any medications specifically designed to cure it.
We simply throw what we already have at it... and as we learn more about it, the protocols change... and we do what we can and hope for the best. Anyhow...
One of the the worst thing we can do is to give our information to those trying to bust our few LLMD's and stop us from getting ANY treatment.
Think about this...
Each time our docs are successful, it digs the IDSA hole deeper and leads them into it... soon they will be totally buried.
They HATE us.. and what our docs do for us sets up the ducks for law suits because we are proving them wrong.
And why don't we have many LLMD's? Because many docs want to protect their butts rather than help their patients.
You said.. "If we had 5,000 stories, wow could we get better perspective."
Those who have been doing this for a good while have seen and heard 5,000 stories, easy!
I've never tried to figure this out... but my guess is I heard over 100,000 reports from patients .. easily 100,000! Most likely MANY more.
As a matter of fact, long time patient advocates usually have heard more stories than LLMD's ever will. And we hear the complaints not normally shared in the offices of LLMD's.. and the nitty gritty.
Some of our long time LLMD's.. Dr. J for example has treated over 10,000 children with Lyme disease.
And he and other LLMD's DO share between each other what they find works for them... and the protocols do change as we learn more and more.
Keep in mind.. each area of the country also has different strains... and what a doc in California might do for locals there.. may not work at all for someone in Florida or New York.
You said.. "Most here live and die off Igenex's WB which had 165, yes under 200 inclusions, in it. Credibility is key. What do we have today?"
I have NO clue what this means.
BUT.. why eat hot dogs if you can have prime rib? After years of this... we know what works best... and recommend it for others to save them being ducked with bad lab tests.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Hi Tincup! I added some more thoughts above. Look at what I said about the doctor who snuck up on me. True story.
Anyway, I meant no offense to anyone on this forum by what I wrote - I just had to get that off my chest.
-------------------- 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
| IP: Logged |
quote:TF has said many times if you go to a GOOD LLMD who knows what they're doing, we can be off them in a year or so
You have made the clear assertion that anyone still sick after a year or so is being cared for by an incompetent.
Justify this statement.
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
There is a whole other world beside Lymenet
You can not assume that all people why have lyme come to this site. I have met so many people now at the clinic coming and going and NOONE even knows about Lymenet.
So I say.. Dream do come true and.. this is not a place to take a poll and think that is the whole group of people who have Lyme.
I think that a lot of the most severe and ongoing patients are here and some of those who do a lot of research too end up here.
But thats it..
I saw a girl who came in recently to the clinic and had been there for 10 weeks and she was like a new person.> She said she feels Normal now..
It happens.. and is happening..
Keep the Hope
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
posted
I was on abx for 6 months. So were my kids. We didn't stop treating at the end of the 6 months and we are not well yet. We have lowered some of our symptoms significantly though.
We now do the condensed Cowden, have done Electro Dermal Screening with Homeopathic remedy treatments and other herbs as well. We've used a rife machine as well.
My LLMD believes we are moving ahead in our treatment. No signs that we are slipping backwards without antibiotics, and she checks that every single month. We have not stopped aggressively treating. Not at all. Just not abx.
Sounds like at the ILADS conference, most docs presenting said 2 -3 treatment for most people.
FWIW, I have had these bugs in my body for my entire adult life -- and I'm 46. I've had symptoms of Bartonella my whole life.
Posts: 564 | From Tick Hell | Registered: Oct 2008
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Deleted my posts. Signing off for a while to think over all this. Time to spend more time educating myself and less time posting. Sorry for the incorrect statement.
I think it's time to change my focus a bit with all this stuff. It's been time for a while. Questioning all the what ifs, protocols, and other stuff isn't going to help at the end. Other stuff can.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
If anyone thinks LLMDs are in this for the money, are off their f*&*^$# rocker.
Med school curriculum has a lot of which is written by Big Pharm and Insurance companies -it is much easier for them to control their mindless doctors this way. I like that these LLMDs actually think! Yea, a doctor that thinks and is human and will treat a patient as an individual.
Standard Docs make a lot more money because they se soooo many more patients in a day.
Ohh man I couldnt said better myself. If you want make money you can hide safely behind big practice, which will handle all the insurance paperwork/lawyers. You just read from the script and charge $150 for 10 minute visit, safe couchy job with great income.
Posts: 856 | From MA | Registered: Jul 2009
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
quote:Originally posted by sonee123: These are the exact symptoms as long as i can remember when i started to get in fall last year returning. EXACT. Those that i thought i left behind long time ago.
Now i am back where i started. It's really depressing and painful
Sonee - How are you feeling now?
My guess is that you were off of abx and began to relapse, and that now that you have started back on them - you are having a herx.
Please hang in there, and remember that you *will* get back to where you were.
When I have relapsed and re-started abx, it has always taken less time and herxing to get back to a good place.
Please check in - or start a new thread - and let us know how you're doing.
It is not fun to be in a relapse, and I remember the depression and pain of old symptoms returning.
Sending you good thoughts.
Editing to add - Richdie - you are a hero for saying that about our LLMDs not being in it for the money!!! Thanks for that!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
The thing I find so depressing I saw the light at the end of the tunnel.
Last late fall into the winter I was starting to feel really good, pain was going away, I would have days I forgot I was sick. We took my blood and I still came back positive for Babesia. Months later, still positive.
Slowly the pain marched on...u[ my arm into my shoulder...the pain in my feet got worse again....
We feel 5 months was not long enough for Mepron. Now, I am back on it again, this time a higher dose, along with abx, two months now.
I would give anything to get rid of the pain in my left arm, almost anything. I don't care what I have to be on long term....because I think I would end up ending my life if I had to live forever with this pain.
-------------------- 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
| IP: Logged |
posted
My son has been on zithro/omnicef for 6 months now. Dr. says at least 6 more months, I plan on having him take a break then no matter what. He has been basically symptom free for 3 months now.
I'm very nervous about him being on long-term antibiotics.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey seek...
I am sorry you feel you have to delete your post.
I pick on you because you stick it out there and say it. You say what others I am sure are thinking. That is a good thing.
And once given the facts, you seem to be able to come back with good thoughts and a better understanding.
Remember you are dealing with folks who have had the unpleasant experience of living through this themselves.. and who have seen thousands more suffering.
I think discussing all this stuff is good... and I appreciate your loose lips.
James said... "I don't care what I have to be on long term....because I think I would end up ending my life if I had to live forever with this pain."
Amen to that.
Once someone who only ever took baby asprin.. one or two a year, at most...
I am now dependent on antibiotics to keep me functioning.
It sucks!
The damage done before I had access to proper treatment will always be there.
But if I can do something to keep me from going deeper in a hole.. and keep me out of pain... I'll do it.
quote:James said... "I don't care what I have to be on long term....because I think I would end up ending my life if I had to live forever with this pain."
That was actually said by richidie. However, I do echo that sentiment.
I haven't been in that kind of pain, but I watched my brother suffer. I totally understand.
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
Just so you know, it can get better. I was on 6 months of Mepron last year. After I went off, the babs came back worse.
But now after another 5 months of double dose Mepron, I'm feeling very very much better.
I went running today and ran my fastest time since probably '04 around the 6 mile loop of Central Park--and it was almost easy.
I felt like myself again. It's an amazing feeling, to feel normal.
So hang in there. I'm going to stay on double Mepron at least another 3 months maybe more. I don't want to give the babs a chance to come back.
Trust in the expensive big Pharma drug!
James
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Thats great James.
How much are you on of Mepron.??
I responded to mepron the best of anything I have been on. I did 9 months and it pulled me out of my big relapse. Sadly I plateaued .. even going back to it 9 months later hoping it would help me again. But looks like I hit the babs pretty well. It did not come back like. It has done its job. That is the ONLY drug so far I have been able to track such progress.
I am still not able to run 6 miles .. but.. oh well. Someday soon.
I was taking four tsps a day and second time around I tried even up to two more than that..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
PS.. I have been on Oral ABX seriously for 5 years + with one break of 1 year in there. I relapsed. January of 08. Orals again until September 09. Now on IVs.
Total then is... 6 years....Horribly sick 10 years and sick prior to that.. : (
Ohh it does not feel so great typing that out..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
I didn't know my question about abx turned into an intellectual debate on this forum.
-------------------- May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen. Posts: 341 | From Columbia, MD | Registered: Jan 2009
| IP: Logged |
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
James,
Is it safe for you to run like that? I know Dr. B in his guidelines talks about not doing any cardio till ready. I guess you are ready? My question all along is, "How does one know when ready?" I have litterly no fatigue at this point.....my primary symptom is pain, terrible pain, mostly my left arm along with the clicking noises, unstable joint feel, and discoloration of hands/feet.
I feel I could run, but I had to pretty much stop lifting weights even though I was getting seriously back into it last year after my first round of mepron. Man, it felt good. No longer.
-------------------- 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
| IP: Logged |
Just so you know, it can get better. I was on 6 months of Mepron last year. After I went off, the babs came back worse.
But now after another 5 months of double dose Mepron, I'm feeling very very much better.
I went running today and ran my fastest time since probably '04 around the 6 mile loop of Central Park--and it was almost easy.
I felt like myself again. It's an amazing feeling, to feel normal.
So hang in there. I'm going to stay on double Mepron at least another 3 months maybe more. I don't want to give the babs a chance to come back.
Trust in the expensive big Pharma drug!
James
Glad to know that things can get better! Babs seems to be the worst infection for me and not letting up. I'm happy it got better for you! Thank you for sharing!
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
| IP: Logged |
I know we've discussed this before. Yes, I'm ready. I felt enthusiastic about running, and it felt good. After, I felt great. It's the next day and I still feel great.
BUT, I have been fortunate that I have been able to run and lift the entire time I've been infected. My running was effected when I got babs in '05. I've had lyme for 26 years.
The pain you're feeling isn't really associated with babs. Babs causes profound fatigue because it creates a state of anemia. I don't know how it would cause your pain.
I know lyme causes joint pain because it attacks the connective tissue. So maybe babs isn't your main problem now. If you're not feeling fatigued, I'd argue that the babs is on it's way out.
Maybe the pain is something else and unrelated to TBD?
There are specific reasons Dr B says to not do aerobic, but it depends on how sick one is. This has been covered in a lot of posts recently.
As has been said before, listen to your body. If you don't feel up to exercise, then moderate it. If it makes you feel better, do it. Worse, don't do it.
Anyway, I hope you feel better. It's really terrible to have physical activity be part of your life and not be able to do it anymore.
James
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[shake]](graemlins/shake.gif)
![[Frown]](frown.gif)
![[Big Grin]](biggrin.gif)
![[lol]](graemlins/lol.gif)
![[Wink]](wink.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic