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» LymeNet Flash » Questions and Discussion » Medical Questions » Improvement % Poll

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Author Topic: Improvement % Poll
CaliLymer
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Hi Everyone,

Just wanted to ask everyone.

1.) How they have had Lyme and when diagnosed.
2.) What percentage better they are
3.) What treatment helped the most

This will be useful info into what to expect and what works.

CaliLymer


Posts: 215 | From CA, USA | Registered: Nov 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
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quote:
Originally posted by CaliLymer:

1.) How they have had Lyme and when diagnosed.
2.) What percentage better they are
3.) What treatment helped the most



1. How long? at least 46 yrs
2. 95%
3. Hard to say. Went through all the usual abx, treated for babs [over and over again], heparin, hormone levels corrected, growth hormone, and lastly, mangosteen juice. What a life-saver!
Been in treatment 4 1/2 yrs....Feeling GREAT!

------------------
oops!
Lymetutu


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CaliLymer
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quote:
Originally posted by CaliLymer:
Hi Everyone,

Just wanted to ask everyone.

1.) How Long they have had Lyme and when diagnosed.
2.) What percentage better they are
3.) What treatment helped the most

This will be useful info into what to expect and what works.

CaliLymer



up


Posts: 215 | From CA, USA | Registered: Nov 2004  |  IP: Logged | Report this post to a Moderator
BugBarb
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1. 8 years ago, idsabled by lyme, 7 years ago diagnosed with lyme, theorize had lyme for a year prior to disabling.

2. 90%+ better, only complaint I belive is lyme related/caused is excessive daytime sleepiness treated with ProVigil.(I had late neuro lyme and almost couldn't walk)

3 6+ years of dual antibiotics helped...as well as going to a psychiatrist and getting on antidepressants etc.. so I couls function well enough to fight the disease.


Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Meemer
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1. I had the fever, excrutiating pain, drenching body sweats delirium and headaches starting May, 2004. I was in screaming pain. I was diagnosed August, 2004. But I also had what I thought was the flu the year before and slept through most of 2003. I had always been an early riser prior to that year, and always running with four kids.

I may have had Lyme four years ago when I started with a sudden "Achilles Tendonitis" after a leisurely three mile bike ride with my daughter. I experienced excruciating shooting pains up my legs followed by sleepiness and an inability to bear weight on that leg. I also felt generally sick with a cold. I was told they were micro tears probably, but from then on I was crippled at 42 years old with Achilles Tendonitis so severe some mornings I had to crawl to the bathroom. I wonder if I had been biten twice.
Since then both legs became AC involved making walking almost impossible at times.

2. Diagnosed with Achilles Tendonitus in 2000, and with Lyme in 2004.

3. Treated with oral Cipro when the doctor thought it was a kidney infection, Levaquin when she thought it was pneumonia, Cipro again for blood in the urine (another kidney infection). Then 1 month IV Rocephin, 2 grams a day. Now I'm on fourth month of 6 months oral Doxycyline 400 mg a day. Cipro was not a good drug for me with tendon trouble. But strangely I improved somewhat with breathing and rib pain on both Cipro and Levaquin even though they aren't on any list for treatment of Lyme.

Within a week on Rocephin I was much better and slowly got off pain meds, and my Achilles Tendon was better than ever. I thought the Rocephin had miraculously cured the "Achilles Tendon". Then when I got off Rocephin, it reversed and my tendonitis came back. I immediately started on Oral Doxy, and am doing great on it, but when I tried to get off in November rib pain, face pain, breathing difficulties, and confusion came back. I'm back to limping and hobbling once more. But I can function in life, and I have energy back. I'm up at 5:00 am with my kids and helping them with their lives. Now if I could only sleep at night again! The only complaint now is behind the light sensitivty, eye pressure, facial pain and mild rib pain. I'm well on my way to recovery I think. The main thing is I function as a wife and mother again, and am no longer viewed as "sick". My focus in life is life is living it now!

Meem


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CaliLymer
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Hi Everyone,

This is really interesting. It's good hear that treatment is somewhat containing lyme if not eliminating it.

Anyone else?

CaliLymer


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Laczitag
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1). had Lyme since April 1999; diagnosed about 4 months later; had Rocephin 21 days; have had 3 relapses and then on oral antibiotics; recently on SAMENTO
2). I think I am now about 90% better
3). The Rocephin IV helped the most in the beginning, but after 3 weeks on, I got really sick as soon as I was off. Now the most efficatious treatment seems to be SAMENTO. When ever I stop taking it, within a few days, I get symptoms.

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cindy_leigh
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1. probably 14 years
2. 85% better, gie or take
3. Mepron and Zithroxax, this was after about a year of doxy, penicillin, and tetracycline

Posts: 688 | From CT | Registered: Jan 2003  |  IP: Logged | Report this post to a Moderator
HeadPain
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I'd love to know how far down everyone got before getting better - too. Anyway-

Sick since March, 2003. Diagnosed clinically in Mar, 2004 as all tests were negative. (after visits to about 20 ducks around Tx and even Mayo Clinic in Minnesota)

On abx from March - July, 2004 IV and no improvements.

From March thru May, 2003 - I went from feeling 100+% (normal, healthy, active person with no health issues) to completely disabled and bedridden in 2 months, the onset was very quick. I have no recollection of tick bite or any reason to believe I was bitten at all. So, I had to quit work and at my lowest, I was about 5-10%. Now I'm about 30% and still miserable.

No idea what to do next....

Live is the pits......


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TheCrimeOfLyme
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1. I dont know how long I had it. was dealthy, deathly ill 9 months before being diagnosed, but pretty OK before then. DIagnosed April 2003, in treatment until August 2004.

2. 90 percent better on a good day, 50 percent on a bad day. Ive never gone "all the way back " symptom wise but have gotten very close. My remaining symptom is Orthostatic hypotension ( and all the lovely symptoms

it brings with it such as blurred vision, dizziness when walking, etc) , internal shaking episodes, and buzzers in my feet.

3 Antibiotics helped. By far, yeast treatment has helped and detox. Chiropractor rules.


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Aniek
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1. I've had Lyme for about 18 years, since I was 12. I was diagnosed about 10 months ago. I have not had consistent acute symptoms for the 18 years though.

2. It's hard to say a percentage. I'd guess over 80% from where I was when I started treatment, at my worst.

3. A number of things. Flexeril combined with myofascial release, physical therapy and exercise was crucial to symptom control. Plaquenil reduces my inflammation and stiffness. I believe Levaquin and Ketek have helped most in killing the critters.
Increased protein (I stopped being a vegetarian) did make a difference in muscle strength.

One of the most important things for me was refusing to give up and let it take over my life. I started law school at night, and I am certain that has helped me. Because it keeps me off the couch, away from the t.v., and gets my mind off the Lyme and into thinking.


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Lymetoo
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Head Pain....do you have pets? Any contact with fleas? Are your parents healthy? You may have gotten a flea bite......or you may have been born with Lyme.

Read this to see other ways you may have contracted Lyme.
Breakthroughs in Lyme Disease http://flash.lymenet.org/ubb/Forum1/HTML/024093.html

I was Lymed near Somerville Texas.

------------------
oops!
Lymetutu


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CaliLymer
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up..up...
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Lonestartick
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1. I've had Lyme since the 3rd grade following a tick bite. That was 30 years ago. I was finally diagnosed in 1998 with Lida Matman's positive culture, but I wasn't sure about going the antibiotic route because I had chemical sensitivities, severe allergies and a Candida diagnosis. I had the highest ELISA (Lyme) that my neurologist had/has ever seen.

By the time I was officially undeniably diagnosed in 2000, I had extensive neurological and cardiac problems and my life had shrunk to the degree that I barely had a life at all. I also tested positive for Babesia (Bowen), Bartonella and Mycoplasma.

2. Today I am 95% better and I believe a full 100% recovery may indeed be possible. Life is great and is becoming even better. I have no allergies, chemical sensitivities and Candida are a thing of the past. They all appear to have been secondary to my Borrelia infection. I am symptom free after 6 months on the MP. Aside from the MP drugs and thyroid, I am medication free. Of course, only time will tell if this is the lasting answer I believe it will be.

3. The Marshall Protocol. www.marshallprotocol.com and www.sarcinfo.com http://autoimmunityresearch.org/

[This message has been edited by Lonestartick (edited 18 January 2005).]


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Lonestartick
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oops

[This message has been edited by Lonestartick (edited 18 January 2005).]


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CaliLymer
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iteresting stuff to someone who is only about 30% functional. It hopefull to see Lymers 90% plus or better after being infected for decades. I start Bicillin on Monday. I hope you dont me bring this up occasionally for updates.

CaliLymer


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GiGi
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What is amazing to me, I know some of you people answering have addressed mercury toxicity also, or at least part of the toxicity that I, as does our doctor, consider one of the major problems of Lyme Disease; of any disease, for that matter.

Why not say it, if that was part of your good results - so the rest of the people still hurting at least can pay attention to a problem that might be a very real one for them.

It was theeeeee obstacle for both my husband and myself, and only after we addressed heavy metals and and dental infections (wisdom teeth and wisdom teeth sites without teeth for years), did we both get well. That came after the viruses and parasite treatment that are part of any Lyme victim that I know to have improved or gotten well.

We are both old folk and yet it worked for us to be well. Very well at the ripe old age of 74 and 80.

Then a poll starts to make sense.

Take care.


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TheCrimeOfLyme
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sorry, but this person that recovered did nothing with the nine amalgrams she has.

In fact, she was tested by a mercola recommended tester and it was NOT my priority.

At least NOT NOW. Everyoneis different.


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GiGi
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Crime, I don't quite understand what you are saying. Are you talking about someone else or yourself. Of course we are all different.
Thank God for that.

Did the person you are referring to get tested with the Skasys (armlength/computer) testing at Mercola's? A little more than two years ago, it did not have Lyme or co-infections in the Skasys program. Co-infections are not as well known in Europe as here
and the program was developed in Germany. I have met and know the person who designed SKasys. It is very different from ART and the testing and priorities are quite different. My husband had full-fledged Lyme with multi positive Igenex tests that did not show on the Skasys. As so often, if it is not in the program, how can you test for it. My dad used to say, garbage in, garbage out. I hope they have remedied that in Skasys. I was tested on EAV, long before I met my ART doctor. I had severe Lyme with partial paralysis. Nothing showed on EAV at that time, except a repeated spider bite. How can you test it with the aid of a computer if the Lyme frequencies are not in it? I hope that today's EAV systems work better and at least cover Lyme thoroughly.

*************

In my earlier post above, I was simply referring to the fact that I know and have been told by a couple of people who responded above that they treated their teeth /heavy metal problem in various ways. If that was part of their success, I feel that should be mentioned. It would give a clearer picture of why they were successful
and their approach.

There is another poster who posts sometimes and is excited about Rife. He is doing very well. It bothers me, however, that he does not mention that he has addressed his teeth and seen a doctor for the metal detox. It tells only half of the story.

It would be nice if people would get the full picture and be able to take it from there. What people do with it, doesn't matter. Yes, we are all different.

Take care.


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