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10/10/2010 10:58 AM

How do you know when you're cured?

jacko
 
Posts: 11
New Member

I think I am nearing the end of my Lyme treatment. I have been on oral anitbiotics for 10 months now, the last 2 months I have also been on IV antibiotics.

Most of my symptoms are almost gone. Which I am so thankful for!

My question is, how do I (& my doctor) know when I can stop treatment and when I am cured? I don't think there is a test that tells of the Lyme is gone, correct?

I am really nervous to stop too early and there be a tiny bit of Lyme left and then it will multiply and multiply and I will be back to square one.

My husband & I want to start a family soon, but I want to be 100% sure the Lyme is gone before getting pregnant.

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10/10/2010 11:33 AM
Supermom2
 
Posts: 269
Member

jacko,

My personal opinion is that once you have it it will always be with you

but it will hopefully become just another happy little bacteria living inside of you in

its own little niche like all the other inactive happy little bacteria and viruses we carry.

Keep in mind that in some areas as high as 10 to 20% of the population test positive for borellia, but show no signs of illness.

Some researchers are approaching the problem from the question of "Why do some people get ill and others don't?"

Obviously, the answer is probably going to be related to some little known aspect of our immune systems.

But I would also like to reassure that I also believe that once the infection is treated, and our immune system and other systems have recovered to normal functionality it should be enough to keep the infection in check, like normal people.

My son got a tic bite, and got Lyme, but I realized it immediately and he was treated, and shows no signs of having Chronic Lyme Disease.

Another reassurance, other types of bacteria or viruses stay in our body both in an inactive state, such as shingles (same virus as chicken pox), or active state -

saliva tests have shown that adult saliva may contain active EBV at any given time.

But these infectious diseases do not get passed on in-utero.

My LLMD has several different types of blood tests to check the level of infection and my systemic response.

It's usually my CD57 number that he refers to to determine how active the Lyme is. Low numbers (below 60) indicate active Lyme infection.

He also checks my coagulation factors and fibrin and fibrinogen levels. Infection causes inflammation. Inflammation causes coagulation. "Used" coagulants break down into fibrin and fibrinogen, which in turn trigger the production of more coagulants.

So high fibrin and fibrinogen can be an indicator of continued systemic infection.

Lastly, these buggers are very opportunistic. If your immune system is not ready to handle them and keep them in check on its own, I think you will know rather quickly.

After three months of treatment, I was mistakenly taken off my Lyme meds. I was better, but not symptom free at the time.

I should have listened to the others here - YOU SHOULD BE 2 MONTHS SYMPTOM FREE before going off meds.

I ended up getting a sinus infection, and ever since I feel like I have new Lyme symptoms popping out daily.

When you go off the meds, make certain you stick to a good diet.

Sugars and glutens interact with your immune system and require additional effort by your other systems to process and flush.

I hope I have helped. Keep us up to date on what happens!

supermom2


10/10/2010 12:01 PM
lindaca
 
Posts: 1009
Member

Most top llmd's agree that lyme is never cured, just under control. They have found that patients that go completely off meds, even those who try to maintain with herbals only, relapse heavily within one year. So, they recommend maintenance doses of meds for the rest of your life to help prevent relapse. Most of the people I know who have declared themselves 'cured' relapsed later. Much like herpes and chicken pox, the bugs that cause lyme and co's apparently stay dormant, waiting for the right opportunity to replicate again.

10/10/2010 12:06 PM
Supermom2
 
Posts: 269
Member

I do want to correct myself...

If I recall correctly, an ACTIVE chicken pox infection or shingles infection can be passed in-utero. The inactive virus cannot be.

supermom2


10/10/2010 12:20 PM
Bettyg
 
Posts: 32241
VIP Member
I'm an Advocate

best wishes on your decisions; i'm at library; have no time to read the above, but i feel it will be with us.

10/10/2010 02:05 PM
VicMac
VicMac  
Posts: 1659
Senior Member

Jacko,

I pray the best outcome for you. Especially if you are planning to get pregnant.

My own experience with Lyme and/or coinfections ( I am still not entirely sure which I still have - so I just label it all as "Lyme" ) is that it never goes away.

There have been several times when I thought I was 'completely' cured, only to realize later that I was right back in a flare up again.

Thankfully, a couple of things have stood out to me as vitally important in working towards remissions, and that is keeping my stress level low and my diet clean.

If you are also on meds because you can tolerate them, but also doing these two things along with it, I am convinced you can expect the best outcome, and perhaps avoid passing it on to your children.

But I am no doctor or scientist, so I don't know if even under the best circumstances you can still pass on Lyme to your children.

However, as others here have mentioned, I do believe it is likely it can stay in a dormant state in the body, and that a right lifestyle is the best way to insure it remains that way.

I wish you well!


10/10/2010 02:32 PM
shorelinelyme
shorelinelymePosts: 1252
Senior Member

After reading the study on possible mosquito transmission of Lyme- I am wondering if these "relapses" are actually just reinfections...

I guess we will not know until more research $$$$ are put into figuring this all out!

Just a thought...

Jackie


10/10/2010 03:00 PM
cmany
cmany  
Posts: 6931
Group Leader
I'm an Advocate

The general rule is - you stay on abx for a minimum of 2-3 months after ALL symptoms cease...

Depending on how bad you were - some may choose longer...years ago my LLMD wanted me to make 10 months before taking me off...

Didn't make it that far then...

But you can start to reduce your meds - to see if the illness will flare up...

Otherwise, until 100% symptom free - keep treating...

I am extremely close to remission now - co-infections are 100% quiet...and my Lyme is only slightly active...so I pulse my natural abx - 1 treatment every 10 days or thereabouts...

So with treating 2x's a month - I find that with my end of the month treatment - there is very slight herxing - thus telling me that the buggers are still trying to cycle...

Thus - not in remission yet...

And you can talk to your doc about that too - about pulsing abx - skipping days - to see if there is increased herxing and/or increased symptoms...

Christine


10/10/2010 03:18 PM
steelers
Posts: 979
Member

I agree with Cmany, I would continue with the treatment regardless. I know for myself, I have been symptom free for a long time but I still alternate natural antibiotics every 2 months in which I take small doses each day.

Steelers


10/10/2010 03:24 PM
neska
 
Posts: 2098
Senior Member

i have i think 3 days left after being on doxy for three months.....my doctor appt this thursday......so i will have a few days of no medicine....
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