What's the average time it takes to get well?

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hopingToFindCure
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Date Joined Nov 2008
Total Posts : 759
   Posted 11/29/2008 1:12 PM (GMT -6)   
Very curious about this one.

I guess the questions should be

1. How long before you were diagnosed?

2. How long did it take to get well?

3. What treatment preceded the cure (remission for sticklers)?


ARe you still well?

Not expecting to many replies since, if you're well, you shouldn't be here. BUT, I really wanted to try. I've tried on many many other boards and generally get about three responses.

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 11/29/2008 2:06 PM (GMT -6)   
The last thing you want to do with all this is give yourself a false hope about how long treatment will take. Co-infections are big part of this problem.
 
But from what i've seen in studying all this for the past 4 years. Treatment could be anywhere from 6 months to 4 years. I see 2 years is about the avg time span. Some people give up early and some stick with it and get their lives back at the 2-3 year mark. However, i've seen many that did treatment for 3-4 years.

hopingToFindCure
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Date Joined Nov 2008
Total Posts : 759
   Posted 11/29/2008 3:40 PM (GMT -6)   
It is a bumpy ride, isn't it, the road to recovery?

phsinvent
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Date Joined Aug 2006
Total Posts : 1155
   Posted 11/29/2008 4:45 PM (GMT -6)   

Well there are those that get to 80-90% of their former selves faster than others. Most of this is due to the Lyme Dr. addressing the other issues outside of lyme like, babesia, bartonella, ehrlichia, mycoplasma, viruses, yeast, vitamin deficiences, toxins(mercury etc) exercise etc.

Basically if you spend most of your time chasing lyme with single drug regimens, you should expect this process to take a long time and miss several key aspects.

Most on here appear to make it to the 80-90% range within the first year. The second year or two is when most of the final resolution of symptoms occur.

The sooner you find treatment following the initial onset, the sooner you will get better.


Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 11/29/2008 4:50 PM (GMT -6)   
I will follow this post with interest as I have wondered about this myself. The part I do not understand is that there are so many people who stop treatment and then within a year or so get sick all over again, as if they had done nothing. I dont understand that part of it at all, how in the world do you know if you have ever licked it entirely??  D

Martha's Vineyard
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Date Joined Jul 2008
Total Posts : 1119
   Posted 11/29/2008 5:02 PM (GMT -6)   
Hope...I was treated the day I found the tick...on me and both of my girls. My 5 year old has missed so much school that she has been kicked out twice...And put back. in pre-k of all things....so keeping a sick child in school is hell. my other is 12 now and she is having a lot of problems as welll, but I have had tons of tutors help her stay in.
I had to quit my job and dump all of my homes. Just being able to take care of my kids was all I tried to do. But in feb I was told that I could not car for them.
I went to germany to get help....that did not work for me.
It has been a long road of tons of Dr.s and a lot of mis information. I had never told Dr.s off before all of this.
I hope that the medical comm. gets their act together and figure Lyme out and sooner than later. The heads of the CDC Shapiro and Steere are dead wrong in their primitive test and primitive ideals and because of this many kids are going to die and need so much support and medical treatment in the future.
Maybe when all of the schools in the North East close down with all of the children home from school, dying...they will change their minds. Or maybe it is going to take that their grandchildren all get ill.
That seems to be the one and only thing that gets the proper attention, is the Dr.s themselves getting ill. Then and only then do they pull their heads out.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
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Date Joined Jul 2008
Total Posts : 1119
   Posted 11/29/2008 5:11 PM (GMT -6)   
They do not have a cure for Lyme. And they are not going to find a cure if they are not looking for one.
The CDC has primitive test out that tell everyone that they are in fact not infected. When they are. And the Dr.s Shapiro and Steer are responsible for this false information.
So, when the Dr.s stop lying and when they stop handing out bandaides for broken arms and legs.
When they admit that this lyme is in fact deadly and hard to fight. And that it is fact is not killed with 10 days of abx any more than Maleria would be killed with 10 days of abx.
The people with lyme are not going to go away, and there will be more and more helpless, and homeless people who will suffer. And it is the whole society that will suffer.
When this disease is attacking our children and they cannot even stay in school, how is this going to affect the USA at large. If we do not take care of our sick kids, and get the CDC to stop giving out false test so that our kids are in fact allowed to die a slow death. If we do not get this addressed we are going suffer.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/29/2008 5:23 PM (GMT -6)   
hopingToFindCure said...
Very curious about this one.

I guess the questions should be

1. How long before you were diagnosed? 13 months, 17 months to finally get a bottle of doxcycline - I was so piszed off.

2. How long did it take to get well? Well, I'd say longer than 8 1/2 years... I'm still counting.

3. What treatment preceded the cure (remission for sticklers)? my one and only Herx was when I waas on a combo of oral doxy and rifampin.


ARe you still well?  Ummmmm, NO rolleyes shakehead shocked skull   shocked   shakehead rolleyes
 
xpecting to many replies since, if you're well, you shouldn't be here. BUT, I really wanted to try. I've tried on many many other boards and generally get about three responses.

We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 11/29/2008 6:34 PM (GMT -6)   
hopingToFindCure said...
Very curious about this one.

I guess the questions should be

1. How long before you were diagnosed?      14 MONTHS

2. How long did it take to get well? I am nearing year four; and still have a ways to go. I do not want to scare people but I can take a while. like phsinvent siad, it depends on you & co-infections. 

3. What treatment preceded the cure (remission for sticklers)? doxy helped early, levaquin is starting to help.


ARe you still well? I feel 85% on a good day  30% on a bad day. :>(

Not expecting to many replies since, if you're well, you shouldn't be here. BUT, I really wanted to try. I've tried on many many other boards and generally get about three responses. The thing you need to keep in mind is; untill Treatment guiedlines change, testing improves, & doctors are educated, theis problem will only get bigger.

Here is my story:

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 11/29/2008 6:36 PM (GMT -6)   
Martha's Vineyard said...
They do not have a cure for Lyme. And they are not going to find a cure if they are not looking for one.
The CDC has primitive test out that tell everyone that they are in fact not infected. When they are. And the Dr.s Shapiro and Steer are responsible for this false information.
So, when the Dr.s stop lying and when they stop handing out bandaides for broken arms and legs.
When they admit that this lyme is in fact deadly and hard to fight. And that it is fact is not killed with 10 days of abx any more than Maleria would be killed with 10 days of abx.
The people with lyme are not going to go away, and there will be more and more helpless, and homeless people who will suffer. And it is the whole society that will suffer.
When this disease is attacking our children and they cannot even stay in school, how is this going to affect the USA at large. If we do not take care of our sick kids, and get the CDC to stop giving out false test so that our kids are in fact allowed to die a slow death. If we do not get this addressed we are going suffer.

I love your spirit, keep up the fight. We all need to be advocates for the truth!!
Here is my story:

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/29/2008 8:12 PM (GMT -6)   
Thanks! The truth is what I wanted. I'd like to know what to expect. I thought I caught mine early too. No such thing with Lyme and friends I have discovered.

My next question is: What does recovery feel like? I mean persistent symptoms cannot always be a herx can it?

I suppose there are co-infection, which the doctor's office called me about. Bracing for the news in a couple weeks. Maybe that's why nothing works.

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 11/29/2008 11:46 PM (GMT -6)   
Thanks for bringing up this subject!

I'm very interested also. I had symptoms for 9+months. Treatment now for 4 months. I feel I've improved maybe 20%. The severe dizziness and short term memory loss are almost gone at least! But I'm still in pain almost daily, fatigued and energyless.

I was thinking that I would be able to return to work after 6 months. I'm really worried that's not going to happen! I'm not guarenteed my job back after 6 mo. I'm also starting to realize that I probably wont be able to return to work doing 8 hour shifts. This means I will probably have to find a new job, which totally sucks!!!

So I would like to hear from others how long they were off work before returning and how they had to modify their job.

Thanks for everyone sharing - Lisa

p.s. I'm an RN. Should I focus on a new career in educating the medical community on Lyme? Duh, yes.
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/30/2008 6:31 AM (GMT -6)   
LupnerRN,

When I first got sick, I wasn't able to make it through the work day. I seem to doing okay now and am able to work. But it's a desk job, not a real physical job like an RN has. I do not get along well with the boss, and the sort of good news is Lyme disease has made me indifferent to his bizaree personality and ideosyncracies but not very tolerant of his lack of fairness. In short, he's a monster. But the Lyme Disease has put him in perspective for me. I don't care as much about working my butt off anymore and especially for him. I also don't feel as creative per se, which was a big part of what I do. I just do the minimum. I need a paycheck to buy prescriptions and see 100 doctors, etc. I wish I had something else that was treatable for less time and ultimately curable. After long enough with Lyme, it's my new way of life. I can't wait to retire some day, but have a long, long, long way to go before that happens.

All the LLMDs I saw say "Oh, we can get you functioning." But I don't call functioning living. I am finally coming to accept what functioning means. Dizzy spells, lots of whining about where my health went, brain fog, word finding, full body crepitus, surfing the Internet looking for answers. Functioning is fun! NOT.

Could you become a discharge nurse?

I think it's great to want to educate the world on Lyme disease. I've tried that. No one listens and no one believes me. Any advice?

PHILAMP
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 11/30/2008 5:02 PM (GMT -6)   

I want to shed a glimmer of hope.  This is my first time posting on this forum as I started on medhelp forum for Lyme in September.  I found a tick on me in June of this year and had a round rash.....dismissed it because I did not know anything about lyme disease and have had ticks in the past with no ill feelings.  A month after the tick I started getting migranes, never had before, nausea, body aches and dizzy spells and extreme fatigue.  I went the next two months through July and August going to GI specialist and ENT trying to find what had all of a sudden thrown me into illness so bad that I thought at that time I would have to quit my job.  No one could figure out anything except sinusitis maybe...put on antibiotics and got better initially.  Then worse again once they stopped.  My primary care finally ask me an important question that jogged my memory, Have you been bitten by anything?  Well yes I said a tick in June that I pulled off and a round rash appeared a day or so later that lasted a week.  My daughter had lyme disease he said, he tested me and I was IGM positve.  He put me on doxy for one month...first week was hell..then slowly I began to get better.  The nausea and aches went away, the headaches got further apart that were daily.  After one month on doxy he ask me how I felt my progress was. I told him about 80 percent better...then I was switched to ceftin another month.  And again I started off bad and then after one week almost a 100 percent better.  The headaches were gone, fatigue lifted.  I tried to remain positive throughout.  My doctors daughter is better after three months of treatment and a coworker of mine was sick with lyme since 2002.  She was treated only twice with antibiotics a month here and there and she only had mild symptoms  since.  So test for the coinfections, I was negative for these.  So maybe thats the key and stay with your treatment and dont miss doses.  I took my medicine religiously and by directions.  Hope this will make you feel better!

 

Kimberly, VA rolleyes   

 

 

 

 

 

 

 

 

 

 

                                                                                                                  

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