richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Hey guys,
I reached my anniversary of the start of treatment. I don't seem a ton better. My feet are a little better, less limping that when it started but my arms get worse. Started in my wrists, like carpal tunnel and then the clicking in the elbows, forearm pain, and now horrible shoulder pain. It hurts to do anything that involves the shoulders, especially the left shoulder. Hands and feet still turn purple and mottled looking.
The arms are killing me. I don't know what to do next.
Babesia tests still positive.
-------------------- 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 have been treating about a year. I definitely feel better on the abx but I think if I stopped them, I would go right back to where I was.
I recently switched LLMD's and my new one goes by Dr. B's guidelines so I am hoping for more progress this year.
Posts: 984 | From US | Registered: Dec 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I've been treating for a little over a year now. Progress has been slow but steady. I am much better than I was a year ago but I still have a ways to go.
My doc changed the protocol every now and then until we finally found one that seems to be working best for me. Looks like you've been doing the same.
Maybe you should try some physical therapy for your arm and shoulder discomfort. It might help to gently retrain the muscles to relieve strain and pain. It would be worth a try.
About the hands and feet mottling thing, it is common even in healthy people. You may be experiencing Raynaud's phenomenon.
Talk with your doctor about your concerns. They might be able to point out some more progress that you've made from an objective point of view. They might also have some new suggestions for you to try.
At least you are headed in the right direction. Better is better than worse!
Posts: 5237 | From here | Registered: Nov 2007
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posted
I'm at 8 months. My LLMD told me at first that it would take a year, now thinking longer.
I've had some great periods where I see a lot of improvement, but can't hold on to them and keep unraveling.
The longest I've felt ok-ish is on the order of a week.
I'm seeking a 2nd LLMD to see if they'd suggest different treatment...
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
It took me 18 months to really turn the corner..hang in there.
Wonko-who is your LLMD-just curious, I'm from MD too.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
I hit the one year mark in January and at that time ended treatment almost to the date I started it a year ago.
I have done exceptionally well for the past 6 months and felt I was over this crap until a few weeks ago when the severe headaches, sore feet, bladder issues and a few other previous symptoms decided to creep back into my life.
I just started ABX 4 days ago and feel like poooo. I hope that round 2 will take care of what is inside my body.
Good luck to all of you.
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
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posted
Richedie, In my experience, it takes a long time to eradicate the cysts of these infections. That seems to be what makes these infections so much harder to treat than strep and other bacteria. I see you were only on cyst busters (flagyl) for 3 months. Maybe talk with your doc about adding flagyl or tindamax in. Or taking supplements that help break the biofilms around the cysts like protolytic enzymes.
Make sure you are supporting your body with proper nutrition and exercise (at your ability level), etc. Research about what works. Burrascano's guidelines, Dr. Singleton's book, etc. to get ideas.
Hang in there!
Posts: 62 | From U.S. | Registered: Apr 2009
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Have periods of feeling better. But mostly feel the same if not worse.
My forearms really ache also. Pain in wrists and left shoulder with clicking elbows too!
Some of us will require much longer treatments I suppose.
Posts: 67 | From south jersey | Registered: Jun 2008
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
I've been treating one year and four months and I am waaaaaaay better. At times I can go three weeks being almost symptom free.
Don't lose hope, you'll get better.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I have been in treatment for 1 year and 3 months. I feel somewhat better, but still have a ways to go.
I have to judge my improvement by comparing how I feel now to a year ago, rather than how I feel now compared to a month ago. Change is very very slow for me.
Still I am feeling optimistic that in time I will beat this thing. I like the saying....slow and steady wins the race!
Only in the past couple of months have I actually finally learned to have true patience with this illness. Just achieving that has calmed me down and I am much less stressed these days. Less stress has to be a plus in our recovery.
Hang in there!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by lyme2health: Richedie, In my experience, it takes a long time to eradicate the cysts of these infections. That seems to be what makes these infections so much harder to treat than strep and other bacteria. I see you were only on cyst busters (flagyl) for 3 months. Maybe talk with your doc about adding flagyl or tindamax in. Or taking supplements that help break the biofilms around the cysts like protolytic enzymes.
Make sure you are supporting your body with proper nutrition and exercise (at your ability level), etc. Research about what works. Burrascano's guidelines, Dr. Singleton's book, etc. to get ideas.
Hang in there!
I am going to mention cyst busters again! Is Tindamax better?
Which herbs are good for that?
Everyone, I hear you on rehab but I went through myofascial release and hit helped little I can't keep spending on those now, I hate this. I was lifting weights regularly for months getting back in shape till the arm got progressively worse. Now, the shoulder, elbow and wrist hurt like hell. Heck, my fingers hurt tonight! My hands never used to get this mottled and blotchy, dark blue.
Maybe this is still Babesia.
-------------------- 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
It is hard to have patience when your life is destroyed and your family just sees you as a miserable sick person, I can barely enjoy time with my 6 year old dughter due to pain and depression.
Also, it is tough to be positive when all I heard was that things should be cleared up in about a year. Hear I am a year later, my knees hurt, click, elbows, wrists and shoulders hurt, click and pop, hand swell up and turn color.
Heck there are 98 year old people who now climb stairs faster than me. I just don't know what is the point anymore.
-------------------- 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
One year for me and no improvement. Will be starting IV Rocephin in the near future.
Posts: 847 | From upstateNY | Registered: Dec 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by keltyl: One year for me and no improvement. Will be starting IV Rocephin in the near future.
Keep us posted.
-------------------- 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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Cyst buster supplements: protolytic enzymes taken away from food and followed by ABX after an hour to kill those you busted open grapefruit seed extract (seems to kill everything, watch out for extremely tough herxes)
research around, I'm sure there are others
It is very hard to stay positive when you feel older than senior citizens and you aren't making forward progress. I recommend using that frustration to fuel research and understanding of what is happening to you to keep searching for what will help you get better.
Maybe there is something more beyond tick borne illness. For me, I found out I had celiac. Once I got that addressed, I made a lot more progress against the lyme. Maybe you have heavy metal toxity? Or worms in your intestines. If you read around on this site you'll see lots of people had other complications beyond lyme.
Once you find a protocol that works for whatever you have and start seeing improvements, then positive outlook becomes much easier.
Posts: 62 | From U.S. | Registered: Apr 2009
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