posted
Well I guess I�m looking for success stories, personal experiences and/or time tables with this drug combo and treatment all together.
I was bitten when I was 15 years old. I�m 32 now and finally diagnosed with Lyme (Bb), Bartonella and Anaplasmosis about 4 months ago. My symptoms are all over the map where some have gone away and some didn�t surface until much later. It started with depression, fatigue (mostly of the legs), numbness of the legs and insomnia. Over the years the depression did fade away on its own but now that I�m older more joint pain (knees, hips, ankles and back) have surfaced. I did have a few anxiety attacks (at least that�s what I think they were, seemed more like a heart attack that just �got better�) but I haven�t had 1 of those for many years. I developed the pain in my heels/achilles much later as well, which looks to be the direct symptom of Bartonella? Maybe?
I was pretty lucky to find my LLMD pretty quickly (through this website, thank you!) but not until after seeing a former PCP that was certainly not lyme literate. My LLMD put me through a full spectrum of tests all of which� I don�t know. All I know is that I tested positive on the least reliable of the tests (western blot, I believe) and I was started out on Doxycycline (200mg 2 times/day) and Avelox (400mg 2 times/day ) right away for the first 2 months. After that I was taken off the Avelox (keeping the Doxy) and adding Azythromycin (250mg 2 times/day) and also pulsing Tindamax (1000mg once/day ) 2 days a week gradually working up to 4 days a week. I�m up to my last week of this and I have a noticeable herx affect on the first day of the pulse. Sore and fatigued after a very easy day. Overall my symptoms have decreased (not always as sore or fatigued overall) so starting with when my meds run out (about a week and a half) I will be changing up my regiment again. I keep the Azythromycin the same. I�ll be switching the Doxy to Minocycline (200mg 2 times/day). I guess to confuse the bugs? Maybe? And to now attack the Bartonella I�ll be starting Rifampin (300mg 2 times/day). I will revisit my LLMD after another 2 months and possibly go back to the Tindamax pulsing or go after the Anaplasmosis.
I�m sure many of you have or currently are going through similar treatments. I�m curious to know� Has anybody else had a similar path? Were you successful with it or even failures? What am I to expect with the Rifampin and Minocycline? I�ve been pretty tolerant of the meds so far. The Tindamax would give me a bit of nausea when I take it and again at night when I would take the other drugs again. I believe it was the Tindamax because it wouldn�t occur while I wasn�t on a pulse.
I�m also beginning to doubt my symptoms a little bit. Will I always have some joint pain or will that finally go away? If so, when? It has been a long path and I hope I�m nearing the end. I will keep at it but how am I going to know when I�ve reached the end? Is it off the meds and onto physical therapy? Will that be necessary? I have asked my LLMD and she�s reassured me that progress is being made and she will see it through. Though, with everybody�s symptoms, co-infections and history so different it�s hard to not feel completely alone on the path. I question my own path with the lack of nerve or cognitive issues as well. Anybody else in the same boat?
Posts: 10 | From Taunton, MA | Registered: Sep 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Spinsyco, I was on rifampin, doxy and zyth and it worked wonders for me. Mino is another med, like doxy but can do different things.
My doc gave me mino and I couldn't take it, so I went back to doxy. Some people can though and it is worth trying it.
All your symptoms and pains require time. No one can specifically answer your question as to when something will go away. It depends on so many variable factors, such as how long you've been infected, how many co infections you have, what you were exposed to in your life time, etc.
You are not alone. Every person on here is on a quest to get well. I have found Lymenet to be such a help to me. People respond to the posted questions fairly quickly, which is such a tremendous comfort to have information. Lyme is such a medically neglected disease by almost every other doctor but a lyme doc.
We are all seeking help and info. I am grateful to those that respond. There are some really nice people here. You've come to the right spot!
My advice, research, research, research. You may also want to get the film: Under Our Skin. I think Hulu has a free download of it. I got mine on Amazon ($35?).
Also, the book: Cure Unknown was a big help to me in understanding the whole lyme controversy.
And, in my opinion, some of the best info comes from the king of lyme (that's what some people call him): Dr. Joseph Burrascano. Look for his 16th protocol (not the 15th). His 16th protocol is here on lymenet (top post under Medical), or you can google it.
My advice to you is to follow everything you possibly can on his protocol. The guy cured himself of lyme, and is highly respected in the lyme arena.
Welcome to Lymenet.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Thanks for the reassurance Catgirl. I think that's all I really need to hear. I'm a little apprehensive when starting a new regiment. I've been pretty lucky so far I should say though. The side effects from the meds and the herx hasn't been too bad so far. I guess I feel it should be worse if I'm expecting to get better. I've seen Under Our Skin and unfortunately it just scared me more. The denial out there that this isn't a real epidemic boggles my mind. I suffered with different issues for all those years without knowing it was Lyme all along since the issues were subtle and seemingly unrelated. It makes me wonder how many people out there with issues like chronic fatigue, RLS or fibromyalgia that just have Lyme. I'm lucky in that regard I guess.... I researched my symptoms and believed they had to have a true source. I found this website and pointed to a good Lyme literate doctor who thoroughly tested me, found the cause and has me in the right direction! I'm very thankful for that.
Posts: 10 | From Taunton, MA | Registered: Sep 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Hi Spinsyco, We live in the same area... I have been taking minocycline and rifabutin (in same family as rifampin) since November. These are the first ABX the LLMD put me on.
I did alright on the minocycline and when the rifabutin was started - 2 weeks later - I experienced flu-like symptoms. I had fatigue, joint and muscle pain, and overall malaise.
I noticed that my mood was very unstable too. I cried easily. Over time, my symptoms got better but I have occasional days where I feel really lousy.
When I started to take the supplements, Lithium Orotate and Ecklonia Cava, I really started to do better. Both have helped with sleep, mood and level of fatigue. Pain is way down too.
I hope the combo helps you. It is almost time to try something new for me.
Posts: 2387 | From New England | Registered: Aug 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I was just noticing your dosages for the mino and rifampin. They are twice the level I am taking. You might want to ask your LLMD about starting on smaller doses if you are worried about herxing.
Posts: 2387 | From New England | Registered: Aug 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Spinsyco, I had lyme symptoms for at least 15 years, and just got diagnosed last year. Like many people here, I went years with doctors dismissing me and my symptoms, so I know how you feel. There is a lot to process once you've uncovered the controversy over lyme.
It's a shame we have docs & scientists that cannot think outside the box. It is unbelievably antiquated to require blood tests for something that hides at an intracellular level. It's stuff like this that puts our healthcare system behind so many other countries.
Trying to convince these docs that chronic lyme exists is as tough as trying to convince people who truly believe their own political party is right that, hey, maybe, this time, the other party is right.
Extremists absolutely believe that they are right, and anyone who doesn't think like them must either be wrong, crazy or inept. Unfortunately, not everyone considers themselves an extremist, especially not extremists (ha ha). They just think they're right. They are closed minded, and unfortunately, stuck.
It's the people who are extremely blocked that behave this way. They are stuck, and until they become capable of seeing other individuals' perspectives, they simply will not grow and will no longer become beneficial to society. They will, eventually, become obsolete.
We need open minded people (individuals, docs, scientists), particularly in positions that directly affect the rest of the population. We need to oust the closed minded (write, vote, etc).
I've gotten to the point where I realize, for me, it's best to just accept that things are what they are. I've embraced and accepted it--all of it.
I realize that so many docs simply don't know that lyme exists to the level it does because they have been trained otherwise. Simple as that. So of course they think people who believe they have lyme either have bad doctors, or the patient is crazy. Fortunately for us, we all know this to be untrue.
Under Our Skin is an eye opener. But Cure Unknown will help sort things out for you. I think that book was what brought me to realize why we have this ridiculous lyme controversy.
I believe it's a combo of ego, money, greed, and a fear of causing mass hysteria that perpetuates the controversy. The lyme community has to whittle away at it slowly. Slow and steady wins the race.
Sorry to be such a drag, but you will get through this. Always push forward. Don't give up. I personally follow Dr. Burrascano's protocol to a T. I believe that his approach of a strict diet, a specific type of exercise, antibiotics, rest (very important), and supplements are worth the effort to try to beat lyme.
Other people on this blog do other things that work for them. Whatever works, works. Just keep a positive attitude and push forward. You're not alone. :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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dbpei
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Well said, Catgirl! Thank you.
Posts: 2387 | From New England | Registered: Aug 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Spinsyco, your doses of doxy, rifampin and zyth are the same ones I took (they worked for me). I made great improvement on these. If you can handle them, stick with them.
Herxes aren't fun (flu like symptoms). I just tell myself that feeling bad (herxing) is a good thing. It means my meds are killing what they are supposed to, and I am so grateful they are working.
I remember going to the store once, and people saw me and just got the heck out of my way (ha ha)! I must have looked like a mummy (pale, sick looking & a staggered gate)! For me, the first herx on doxy/rifampin & zyth was the worst (for that combination of drugs, not too bad though) Mine got better after that (with that drug combo).
Hang in there Spinsyco and dbpei.:)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Yeah, I may be wrong with my Rifampin dose and I'll have to look again (obviously before I start taking it, couldn't read the doc's handwriting on the script, lol) I don't have it in from of me. I read Dr. B's protocol last night, fter your (Catgirl) first reply, it was very insightful. Then I got to the part about how much sleep I'm supposed to be getting and said oops! I should be sleeping! Oh well, I'll have to catch up tonight. Thanks again for the info. I'll update when I start the new regiment next week.
Posts: 10 | From Taunton, MA | Registered: Sep 2011
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