richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Next Thursday will be two months since treatment started and no real change for the better. No major herx either except maybe the odd shaking or nausea, lightheadedness, but nothing huge. I keep waiting to notice some improvement, but nothing and it is discouraging. I started taking Mepron and Azithromycin in late July and Ceftin was added in late August. Am I just being impatient?
All I want to do is for work to end today so I can crawl into bed and sleep and forget about this.
-Rich
-------------------- 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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adamm
Unregistered
posted
I'm nine months in and have seen no change.
I suspect that there are some strains of BB out there resistant to
all the standard--maybe try herbs or rife?
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Man ,this is not good. Sorry to hear that about you.
-------------------- 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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ByronSBell 2007
Unregistered
posted
It takes much longer than 2 months, you also need more inovation in your treatment, not just ABx's...
mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Often times people actually feel worse two months in. I was a mess.
It depends on how sick you are, how long you've been sick, diet, detox, metals, yeast and other things mentioned above.
Posts: 1761 | From USA | Registered: May 2006
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posted
I agree with what everyone else has said. Don't despair yet.
I started getting better at month 4, but my dad, who was much sicker, didn't start getting better until month 6. Some people take even longer. My dad, at 18 months of treatment, is a completely different person now. It's amazing; truly amazing.
Good luck.
Posts: 129 | From Virginia | Registered: Feb 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I agree with Byron. It takes much longer than two months to feel better or sometimes even notice a difference.
For me it took up to a year to notice a real difference. And now, a year and a half, I'm having good days and bad days... but not feeling all that great most of the time.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
OK, thanks all!!!
diet? - I am very careful about diet. heprin? - Have not heard of it. light excercise? - I do exercise heavy and light. sleep? - I try to get 7-8 hours each night. detox? - Nothing yet other than exercise/sweating. co-infections? - I am being treated for co - infections. viruses? - Not checked yet. heavy metals? - No testing yet. bromide toxicity? Never heard of it. supplements? - Yes. hormones? - ???
-------------------- 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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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I took various abx for 8 months & it didn't do anything to help my Lyme. I just got bad intestinal cramps. I had to stop due to the intestinal cramps.
Some people say I should have taken them longer but if they weren't helping to begin with - why take more for longer periods of time? That has no logic to me...
I guess we all are different. No offense to anyone who believes that the abx help or who have gotten better thru abx. They just didn't work for me & I didn't think taking more over a longer period of time was going to change things...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by sparkle7: I took various abx for 8 months & it didn't do anything to help my Lyme. I just got bad intestinal cramps. I had to stop due to the intestinal cramps.
Some people say I should have taken them longer but if they weren't helping to begin with - why take more for longer periods of time? That has no logic to me...
I guess we all are different. No offense to anyone who believes that the abx help or who have gotten better thru abx. They just didn't work for me & I didn't think taking more over a longer period of time was going to change things...
Actually it might have when you understand the life cycle of Lyme bacteria. I had a few docs sit down and explain on paper and it made total sense.
-------------------- 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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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It took 3 1/2 years before the antibiotics took effect in my case, but I noticed the antibiotic was working, though it was very brief, around the 5-6th month. I got "better" and could go outside, but a week later it disappeared.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
It took my wife over six months to notice any difference.
I was the one who could see the difference.
To her, when she felt bad it was always "the worse she ever felt"
But to an observer she was more functional.
She has a long way to go, we are thankful for any change.
Hang in there.
Posts: 65 | From Georgia | Registered: Oct 2007
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richedie
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Member # 14689
posted
The people who recommended me to the doctor I see in Baltimore and including the doctor, all said expect about a year to get better. I guess I should feel fortunate that I can still get around, take walks, and lift weights. I am only limited by pain. Brain and fatigue have been fine. Really, the only things that continue to bother me are the pain in my feet and the pain in my left arm/ wrist and hand. The eye floaters don't bother me much. Although now some pain is creeping into my knees and I was limping the other day. Other issues have become less of a problem over the months even before abx as if my immune system was doing a decent job on its own.
Because I am so mild, it had me doubting if I really had Lyme/TBD. The two positive tests for Babesia including the FISH and a very positive Bb IgG test, not to mention an Indeterminant IgM test all has me believing and understanding this is a TBD. Plus seeing Dr. B talk the other day about how it is different for each of us and there are so many grey areas and many strains of Bb that can cause different symptoms.
It is weird because my initial symptoms were tingling in my left and feet which is more common with later stages! Then came all the other crazy stuff.
In the back of my head is the MGUS I have. Some say that THIS is causing my symptoms! Some docs say the infection could be causing the MGUS or it could be benign.
-------------------- 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
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Member # 14689
posted
Funny, I read on Dr. S's sight that Ceftin can have an impact on Bart and I have noticed a slow decrease in symtoms in my feet over the past month since starting Ceftin. Could it be? I know it will take longer and we aren't really targetting Bart right now but maybe the Azith and Ceftin are hitting a bit of Lyme and Bart. I am still taking the Mepron for Babs but not sure what symptoms are being caused by Babs.
-------------------- 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 am in my 15 month of abx and in my 30th year of lyme and I see a slight change but not enough. I am talking a change as in being able to live a normal life. I am no where near that yet.
I just retried flagyl last week at 250mg once a day. I have been off it since April. My body just can't tolerate it.
I am at a standstill and not sure what to do next. I really think IV should be next. I just don't know what to do. To be honest, I am ready to just give up.
I hope that you are able to rest this weekend and hang in there. It does take time, a really long time.
That is one lesson I learned very early on.
Posts: 101 | From NJ | Registered: Apr 2008
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richedie
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posted
How do you know it hasbeen 30 years????? I have no idea myself because I didn't find a bite or anything.
-------------------- 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
Vacationing on Nantucket Island with my family. Came home with a very strange rash, typical bullseye.Classic symptoms to follow.
I am now 40 and trust me I am your classic case of lyme disease.
Thankfully, my Father has an impeccable memory and the blood tests I had showed the signs but unfortunately it was not known back then.
Posts: 101 | From NJ | Registered: Apr 2008
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posted
My husband was also the one that really noticed a change early on. It was hard for me to tell month to month, but 6 months in I thought about how I felt before I started treatment, and it really was a huge change.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Every now and then I feel like I am getting better. I really have not had Herx symptoms like some, but I go through periods now of feeling good. Saturday I felt good enough to cut the lawn and do some landscaping, I felt really good. Then I ran some errands, stopped i na coffee shop and was enjoying the day.
Then about 3pm, I started going down hill, more floaters, pain in my arm and feet. By evening and night we were at my wife's highschool reunion and I must have been the only one there in terrible pain. I had to stay seated most oif the time. My feet felt like they had been beat with a bat followed by standing in a frying pan. Oh, and with occasional electric shocks! By the time we got home, I was a mess. I am paying for it today, my right foot feels icy cold and painful, and my left arm is killing me.
I have no idea how I am going to survive our 8 day trip to Disney in December with all that walking. How the hell did I go from being so athletic and active to being alump who sits around.
-------------------- 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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quote:Originally posted by richedie: The people who recommended me to the doctor I see in Baltimore and including the doctor, all said expect about a year to get better. [/QB]
Exactly
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I am now over 7 months total of treatment and I have less issues with my feet these days but the problems are there, just not as severe. The pain in the arms and hands doesn't seem to budge much though. I have had a few days where it felt pretty good, but the pain just hangs on as does the mottled skin. Can some symptoms just take longer than others? Some days the arm hurts terribly, other daysb arely at all and is totally functional unless pushed to far.
Thanks all.
-------------------- 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
quoting my llmd he said you did not get this sick overnight dont expect to be cured overnight either, im in treatment for 15 months now , I had about 47 major symptoms when I was diagnosed and now im down to about 3 more stubborn ones left to get rid of~pj
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
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richedie
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Member # 14689
posted
quote:Originally posted by pj1954: quoting my llmd he said you did not get this sick overnight dont expect to be cured overnight either, im in treatment for 15 months now , I had about 47 major symptoms when I was diagnosed and now im down to about 3 more stubborn ones left to get rid of~pj
Thanks, I needed that! Glad you are only down to 3! I should have kept a list of all symptoms although I do still have my original list I'll have to go through. Did you have arm/hand pain issues like me?
-------------------- 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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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Richie,
Have you taken any antiparasitics? Parasites and worms are a MAJOR part of Lyme.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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btmb03
Unregistered
posted
Gael, could you pls list some names of anti-parasite treatment Thx!
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Only Mepron for 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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