a lot of people here made some good progress. i wanted to ask u:
- how long have u been sick before the first treatment with abx? - how long did it take to recover comepletely?! - how long did it take to lift the brainfog completely? - are you completely symptomfree or do u have to take sometimes abx when it get worse?
thanks for sharing
greetz
Posts: 371 | From velocity of light | Registered: Sep 2009
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
- how long have u been sick before the first treatment with abx?
Initially bitten but undiagnosed for 20+ years. Remitting and relapsing most of that time.
Very ill for 4 - 5 years prior to diagnosis and treatment.
- how long did it take to recover comepletely?!
4 years treatment - many ups and downs, stops and starts.
Might have gone quicker if I did not have other complicating factors due to being undiagnosed so long (Addison's Disease, Thyroid Disease).
- how long did it take to lift the brainfog completely?
Started seeing improvements after the first year - improvements had ups and downs, but major improvements happened 2 years into treatment, and then again after addressing the other issues (Addison's and Thyroid).
- are you completely symptomfree or do u have to take sometimes abx when it get worse?
I have been off of long-term abx for more than a year. No maintenance abx, but still worried about possibility of relapsing.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
- how long have u been sick before the first treatment with abx? 9 years
- how long did it take to recover comepletely?! 2 years. Went off abx after 9 mos. The rest of the time spent addressing fungal issues, immune system, detox, parasites, and restoring mineral levels
- how long did it take to lift the brainfog completely? 5 mos
- are you completely symptomfree or do u have to take sometimes abx when it get worse? Off abx over 5 years. No abx for maintenance. Remaining fibro type issues addressed by taking Flexeril at bedtime and weekly IM shots of Magnesium.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
lymeinhell- i would be very interested in hearing more what you did for detox and parasites? Did you have a ND guide you with this?
I would like to go to an ND to get help with these things but it is rather pricy so i was curious as to whether most of this could be done at home. Did you use an herbal blend parasite product?
Posts: 34 | From Texas | Registered: Mar 2010
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posted
i would like to hear more of detoxing too Posts: 371 | From velocity of light | Registered: Sep 2009
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
My LLMD and an ND helped me through all. I am fortunate that they worked together. While I was still on abx, first we hit fungal issues (long term Diflucan, oil of oregano, capryllic acid, etc), then started first with the foot detox patches (www.podipatch.com), then rebounding, then detox body wraps and FIR sauna, and some herbal detoxes. I used a Zapper for parasites while on treatment.
Every six months I use a Zapper for parasites (I have multiple pets and realize my exposure is high).
I continue to also be on a thorough supplement/mineral program along with immune enhancers.
It's all layers of an onion, but I truly believe abx alone do not get people well from Lyme if they've had it a long time. Lyme is just the straw that broke the camel's back - you need to fix the other stuff that came before. Just IMHO
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
thank you lymeinhell for sharing- i would be thrilled to find an ND that will work with my lyme doc- i think my lyme doc wouldn't mind at all.
I agree with the statement that we are like onions with layers!
Ive also been wondering about those zappers and how they work, i must admit i'm nervious about trying something new but i'm curious to know what brand you got in case i try down the road?
Posts: 34 | From Texas | Registered: Mar 2010
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posted
Sick with lyme for 6+ years before diagnosis and treatment.
I've been on antibiotics now for 2 years. I am not off antibiotics yet, but it took 9 months of treatment before I started feeling really good.
It took 2 weeks after initiating bicilin injections (which was my first lyme treatment) for the brain fog to completely lift. It has not returned at all.
I am symptom free most of the time except right before my period starts (minor symptoms at that time). Although, I have not been taken off antibiotics yet.
Lymers
Posts: 287 | From Humboldt County, CA | Registered: Jul 2009
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posted
- how long have u been sick before the first treatment with abx? Starting from when I first had any symptoms, 6 years. I was VERY sick for the last year or two of that.
- how long did it take to recover comepletely?! Not sure yet! I treated for a year and a half, was symptom free and not treating for a year. Now I'm back on it.
- how long did it take to lift the brainfog completely? I got nowhere with the oral antibiotics. Saw significant improvement after a month on IV, totally gone after three months.
- are you completely symptomfree or do u have to take sometimes abx when it get worse? When I wasn't having symptoms, I wasn't taking anything. But I only made it a year, so maybe I should have been.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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posted
I was on Rocephin... I think that and Ceftraxione are the same thing?
it's the only thing that helped me at all.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by daniel: hey folks..
a lot of people here made some good progress. i wanted to ask u:
- how long have u been sick before the first treatment with abx? - how long did it take to recover comepletely?! - how long did it take to lift the brainfog completely? - are you completely symptomfree or do u have to take sometimes abx when it get worse?
thanks for sharing
greetz
I was sick about 20 years. I did not recover completely. It took about 2-3 years for the Brain SPECT scans to return to normal and for that "fog" feeling to lift. I still get it sometimes though, depending on if the inflammation increases systemically.
I have to take ongoing antibiotics but I'm working on new methods that may help me stop them. Until then, Tetracycline is my friend.
-------------------- 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.
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I had been sick for 15 years before I began antibiotics.
I've been on abx for 23 months. Have not recovered completely, but I feel 90% better on the good days, and maybe 75% better on the bad days.
My brain fog lifted in month 2 or 3 of treatment when I added Resveratrol to my program. Buhner claims it helps the brain metabolize the buildup of quinolinic acid. But brain fog can have many underlying causes, so my cure may not be everyone's.
I just took a 6 week break from abx. (Got C. diff.) My doc thought maybe I would be done, but some symptoms have returned, so I'll be back on abx soon. But I think I'll be done with abx this year. Relapse? We'll see!
posted
I have been sick for 8 years but was probably bitten 5 years before that. Was very sick and getting sicker for the first 4 years with lyme, babesia, bartonella. Was diagnosed year 4 with lyme and did the standard one month IV rocephin and that was all the IDS would give. I went downhill fast after that with mostly neuro symptoms.
Have been with LLMD for 4 years. I am probably 90% but still moving forward. Feel pretty confident that I can get to 100%.
-------------------- Treelady Posts: 39 | From California | Registered: Dec 2009
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I will be back to read what others wrote when that part of the brain and vision are working...
- how long have u been sick before the first treatment with abx?
....Not an easy answer. Became too sick to work or do household chores in Sept/Oct 2001. Not dx until 2003..started treatment then.
...But, where some of those crazy symptoms I had since 1984 lyme related?
- how long did it take to recover comepletely?!
....Have not recovered yet. It will have been 10 years in Sept/Oct.
- how long did it take to lift the brainfog completely?
..Have not recovered from this either.
- are you completely symptomfree or do u have to take sometimes abx when it get worse?
...nope
....It might just be me, but it seems those that have the funds to pay out of pocket and get the help they need are recovering.
...Or it could be the drug needed to recover is just around the corner if one had the funds needed.
...There was a doctor collecting data on the same questions you are asking....
...I am looking forward to hearing the result
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Posts: 371 | From velocity of light | Registered: Sep 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I recently watched a doctor online talking who claimed that for every year your sick you have to calculate 3 months of treatment.
So if you are sick for 10 years then it will take 30 months to get better.
That is what he said. Not sure if it is true.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Sick at least 15 years before reinfection. Started treatment 1.5 years after reinfection.
Brain fog lifted significantly after 2 weeks of doxy.It has come and gone but never as bad as it was in the beginning. Now, I just have a foggy day once in awhile.
I noticed major improvements in my health after 2 years in treatment (10 of those months were strictly omnicef and zith).
Just passed my third year on ABX. 2 years orals, 1 year IV. I'm 90% improved on good days and 70% on bad days. I'm still making good progress on abx, though so I forge ahead.
Posts: 1104 | From N.California | Registered: Jan 2008
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
How has the long term antibiotics effected your body? I have always heard how bad antibiotics are for you so wondering if any of you had complications from taking them long term.
So glad to hear they have improved your lyme symptoms but every time I take a pill I fear them.
Posts: 1058 | From VA | Registered: Oct 2010
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posted
Reading many of your posts, I have been wondering: how exactly do you know how many years that you have lyme? Especially for those who say they have it for 10+ years.
Also, another question for myself. How late is late stage? I read that Neuro symptoms are late stage symptoms. But from my first symptoms, a set of flu-like symptoms, to Neuro-like symptom, tingling and light tremor, it only took 1 month.
Posts: 11 | From MA | Registered: Jan 2011
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Well, I have had some complications from long term abx. C diff and now I cann't tolerate dairy or gluten. I think it is due to abx.
But, I cringe to think of the alternative had I not done all of them. I'm certain I would have had a long, slow, painful death.
I don't know for sure how long I've been sick. I can look back and see a few times in life when I had serious illness that could have been the onset. But, when I noticed the major symptoms starting is when I date it. For me, the fatigue was the one symptom I use as a marker because it was so profound and i knew exactly when it started.
Also, I think i had a mild case of lyme induced meningitis that cleared up on it's own and that is exactly how my husbands lyme started too.
In any case, I also know I had a reinfection in 2006 during a camping trip. Dumb duck said I had a spider bite.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
- how long have u been sick before the first treatment with abx?
luckily only 2 months
- how long did it take to recover comepletely?!
i was FINE within 6 months of treatment, but after 5 months i relapsed with Babesia. I am a perfect example of the importance of treating co infections even if you test negative.
- how long did it take to lift the brainfog completely?
within 5 weeks i was able to clearly think and feel awake!!
- are you completely symptomfree or do u have to take sometimes abx when it get worse? my lyme symptoms are gone, but i have babs symptoms and am treating that now.
TREAT FOR CO INFECTIONS EVEN IF YOU TEST NEG!!
-------------------- A tiny bug no bigger than a pimple on your butt can change your life. Posts: 101 | From Southern NJ | Registered: Oct 2009
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Not for me unfortunately.
quote:Originally posted by springshowers: I recently watched a doctor online talking who claimed that for every year your sick you have to calculate 3 months of treatment.
So if you are sick for 10 years then it will take 30 months to get better.
That is what he said. Not sure if it is true.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Seek that is not true for me either. If that were so, I would have been well in 6 months.
I was sick for 2 years before starting treatment. This May will be 3 years of treatment. I started feeling somewhat better after a year and a half of treatment. I am still gradually getting better, but it is a slow process.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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