posted
Hi Guys, I have been ill for a year, been on abx, 4 times, am now, Amox, 1500mg's a day. I actually felt great for two times during the year, for about 5-6 weeks. Symptoms are slowing down, I am eating well, following the food guides. Will see LLMD in Nov, will take more abx until then. I have never had to leave work, stop driving, etc. Numbness, tingling, heavy legs, sore joints, stiff neck, broken sleep, spasms, the little things I guess. My story is not as bad as so many others, I pray for you all! Should IV, help me more, then to the orals? What % rate can I look forward to re: recovery, ok guys!
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
My doc says if you get too aggressive the thing will hid out in your bones--it is so hard to know what to do. If you are feeling better I would take it nice and easy.
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
No one on this site or any other can give you a definitive answer on this...
You seem to be doing well so far...I went bact to work myself once when the ducks said I was cured only to relapse after doing just orals .....
I think IV or IM added to your orals would only help....
There is evidence that even with both or either relapses happen whenever abx is discontinued....
No prophylactic abx has been designated as being totally effective in all cases....
I used metronidazole for two years successfully but relapsed.....now I may have a higher load than you and possibly more resistant strain or strains and coinfections that have not been addressed as well......
In a nutshell we all seem to be the same but somewhat different as well...why? No one has been able to figure that out for sure...
I hope you are one that gets 100 percent cured...
But if it's only 70 to 80 or 90 I would take that.... It seems with the symptoms you're still experiencing...you still have an active infection......time will tell...but I would'nt get off any abx regimen too early..
good luck zman
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Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
I think you have a very good chance at 100% ... but make sure you feel GREAT for at least 2 months before stopping abx. To do otherwise could mean a relapse later on.
------------------ Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express! oops! Lymetutu
posted
Well, it kinda depends on whether you are able to continue getting treatment. Lot of forces trying to prevent that. Did you read the NY Times article today? That is just one example.
Posts: 8430 | From Not available | Registered: Oct 2000
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BostonLyme2005
Unregistered
posted
Thanks! No, I did not read it today. I am going to fight tooth and nail for treatment. My PCP said if I did notice some improvements that he would give me another months worth of Amox, 1500 mg's a day!
quote:Originally posted by lou: Well, it kinda depends on whether you are able to continue getting treatment. Lot of forces trying to prevent that. Did you read the NY Times article today? That is just one example.
mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
The key is continuous treatment along with the lifestyle changes you have made until you are symptom free for a period of time, several months for sure.
You may have to be creative. We are treated for acne, an acceptable long term use of abx.
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
think hard about co-infections. The tests for them aren't very good at all, but get tested, something might show.
Some of us can be treated for years without knowing we have more than one infection. And that co-infection might require a protocol we'd never done. Not so much IV vs orals- more about what organisms and what they might be susceptable to. And what doses they are susceptable to.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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BostonLyme2005
Unregistered
posted
Thanks!
quote:Originally posted by caat: think hard about co-infections. The tests for them aren't very good at all, but get tested, something might show.
Some of us can be treated for years without knowing we have more than one infection. And that co-infection might require a protocol we'd never done. Not so much IV vs orals- more about what organisms and what they might be susceptable to. And what doses they are susceptable to.
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Make sure you stay on ABX for at least 4 months after recovery to keep it permanent.
Also if you are from Boston contact Dr.D who is ID specialist; in case you have further problems.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Rob, My doctor has said that he has seena number of people who were sick a year or less recover fully. Longer infections, in his experience, tend to relaps if antibiotics are withdrawn. So, based on your story, I think yur chances are good. They might be improved if you were to take a combination of antibiotics from more than one category, such as a penicillin and a macrolide. David Posts: 2034 | From CA | Registered: Jan 2003
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posted
My friend had Lyme for 2 or 3 years with primarily neuro symptoms. He kept testing negative with the CDC-recommended tests until he passed out and woke up with a paralysed face. After a few months of antibiotic treatment, he recovered completely. It's now five years later and he's completely fine.
-DS
Posts: 36 | From Summit, NJ | Registered: Mar 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Wow! For a minute there I thought I wrote your post! It sounds just like me, only I have had great difficulty working and have some neuro symptoms as well. I don't have an LLMD yet, but my ID doc prescribed me 3000 mg a day of Amoxicillan. I just finished three months of it, with no improvement. NOw I am starting (Day 5) Doxy at 400 mg a day. I am nauseous but it's worth it if it works. I'm in CT. Feel free to email me at [email protected].
Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
Dr D in Boston, last I heard, does not beleive there is any need for abx to cross the blood brain barrier in nuero-lyme.
Please read up on this issue and make up your own mind on it if you are seeing him or someone influenced by him.
If you're having numbness, tingling etc, etc, then your CNS is effected.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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BostonLyme2005
Unregistered
posted
I am getting better, I feel better some days, and I think I can get better too.
quote:Originally posted by caat: Dr D in Boston, last I heard, does not beleive there is any need for abx to cross the blood brain barrier in nuero-lyme.
Please read up on this issue and make up your own mind on it if you are seeing him or someone influenced by him.
If you're having numbness, tingling etc, etc, then your CNS is effected.
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