posted
Got ill in Jan started treatment in Feb.. Doxy & zith for 2 months.. Rocephin for 30 days... Zith 250mg 3 wks... Boosted zith to 500mg for 3days now & Started Diflucan..
Should i stop treatment like my Dr said to see how i really feel?... I just dont think medication can cause you to feel so different thats why i havent stopped yet.. I dont want my lyme to get worse.. Any opinions please?
-------------------- Neuro-Lyme (possible bart) Symptoms started Jan 2011::Diagnosed Feb 11th,2011:: *Anything is possible thru God who strengthens me* Posts: 775 | From Pennsylvania | Registered: Feb 2011
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posted
I'd do what your doctor said. Good luck.
Posts: 129 | From West | Registered: Jun 2011
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
My LLMD said treat until you're symptoms free for 4 months. She said too many relapsed stopping too soon. How long have you been symptoms free?
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Nicole only you and a LLMD or lyme literate doc can make that decision.
Are you sx free? How long have you been sx free if so?
What's his reason for wanting you to stop abx? Is that what you want?
We don't know how you feel? We can't advice you to stop or not? We don't know if you are in remission?
Is your doc a LLMD? I can't remember if you started with one or not. It took me about 4-5 yrs to put the whole story of when I actually came down with lyme.
It took me years to figure out there was sx before I actually got very ill. I didn't realize until I started doing major research and reading threads from others like Gigi that the toxic molar tooth I had pulled 4 days before the illness from he!! hit was involved in my becoming so ill.
That tooth removal(7/99) at my insistance was the straw that broke my back. I had a dozen deer ticks/nymphs on me 6/99.
I covered those ticks with clear nail polish. My LLMD after I fully described them in '02 said no those bites don't sound like chiggers, he said I would say they were ticks.
Not everyone can go back and pinpoint the events that lead up to their illness. You say you didn't become ill until Jan '11?
Were you truly healthy one day and ill with just lyme bacteria the next day? Many of us didn't put alot of signs together until months, years down the road.
Tutu, was ill for years and years. I bet she has learned some things about those years of her life that point to an explanation as to why she got this labeled "illness" at this age/stage of her life.
I remember Tutu having/posting about sickly childhood experiences after she started learning the whole story about lyme & co....she had aha moments. That goes back to '02 and 03, a long time ago.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
my only remaining symptoms are fatigue & that depersonalization feeling of not feeling 100% like myself.. All the pain come & goes now.. I just dont know what to do
-------------------- Neuro-Lyme (possible bart) Symptoms started Jan 2011::Diagnosed Feb 11th,2011:: *Anything is possible thru God who strengthens me* Posts: 775 | From Pennsylvania | Registered: Feb 2011
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posted
Pam, what's your tooth extraction story? I had a tooth extracted shortly before my ordeal began, too, so I'm curious!
Posts: 156 | From Virginia | Registered: May 2011
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quote:Originally posted by RC1: Hi, they say to treat until you have been symptom free for 2 months.
- at least 2 months
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Nicole, LLMDs are not all equally qualified and you are right to question your doctors decision to have you stop abx.
Depersonalization and extreme fatigue are symptoms of bartonella and/or babesia. You have not had treatment to address either of these co-infections. Dr. B says he has NEVER treated a patient that had only borellia and more than likely you are not the exception.
You should be symptoms free for two months before quitting abx. I would suggest you get a second opinion from another LLMD. I have had a lot of ups and downs with this disease. I have thought I was well enough to quit abx twice. Both times I relapsed into a worst state than before and it took longer and longer to get me out of it.
Your borellia could be in cysts which you have not addressed. When you quit they could re-emerge and take over again. You could also get hit with the co-infections. Doxy and zithro can keep them suppressed but when you quit they are free to explode.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Do a search on my #2022. subject dentist and any date, in medical forum. I've posted it recently.
I've been posting about this part of illness from he!!. I believe it was strep that was sent into my bloodstream.
TBTG that I lived. I was on abx within 10 days of becoming ill. My PCP recognized lyme sx. He just didn't know about extraction.
I didn't know it was important for years.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Tricky Tickey
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Nicole, I can only speak from my own experience; and you've certainly gotten some good feedback here. You have every right to question the doctor's decision for sure. Looks like you got on top of it fast....that's good! I was the same, started REAL treatment 8 weeks after bite. Doxy/Flagyl combination. Didn't have symptoms of Babesia nor did doc think I had Bart, either.
Well, after 4.5 months (July 6 2010 - Nov. 22, 2010) he stopped me cold turkey. I'd felt normal for nearly 2 months. Running around, stamina good, back to work, etc. Had that old nagging elbow pain still, but other than that, good to go. So he takes me off.
Some folks questioned why he took me off with my elbows still hurting. The deal was, that symptom didn't get worse and eased up some over the last 2 months. And it was the ONLY 'symptom'. So.....I went cold turkey. Strange things happened. Lip twitches, little off balance issue a couple of times, disoriented couple of times, then the elbow pain starts lessening!
Then the lip twitches stopped. Then the balance/disorientation never occurred again. After I'd been OFF meds for 2 months! I never went back on ABX after that. I did do Salt-C for 5 weeks, which got rid of some parasites, then I blew up with Candida and shingles. After that, nothing but menopause (yep) and elbow/arm ache some.
Now, you are in charge of your treatment. Take it and run with it. Do what your gut instinct is telling you. Only you know how you really feel. You are in charge. God bless you, I know how you feel. But thank God you attacked it early!
I don't have fatigue now. Nor disorientation, Nor balance issues. Just the old elbow/arm ache going on, which is in no way debilitating. I had a choice, I could have demanded to keep treating, but I chose to do as the LLPA suggested. There were many who told me I was fooling myself, I was still sick, etc. But you know what? I had to NOT allow information overload, uncertainty, and doubt push me back into treatment without first testing the water.
It's been 7 months with no relapse. I'd say that's a pretty good track record. I'll just wait & see. Maybe my story has uplifted you in some way; I hope so. Pray and meditate. You will know what to do now. God bless!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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nefferdun
Frequent Contributor (1K+ posts)
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Dr. B says when you quit abx not to consider yourself out of the woods until you have made it through three years without symptoms.
I suspected I might have bartonella but my symptoms were not extreme at first. I waited until it was pretty bad before I recognized it and saw an LLMD that confirmed it.
The same thing happened when babesia emerged. I was feeling very good but had loss of stamina, a few hot flashes for brief periods of time and a bit of air hunger now and then. It was easy to dismiss as my imagination or hormones.
I did not get treatment until I was overwhelmed. Although I completely collapsed in just three months, I am still struggling to get my feet back under me after 7 months of very expensive treatment. Mepron costs me $50 a day and I should be doing twice that amount.
If I had known about the babesia before it became so strong I could have cured it much faster, easier and cheaper. When these infections get out of control they sometimes cannot ever be eradicated. It is safer, in my opinion, to stay on abx longer than necessary than to quit too early and end up treating for the rest of your life.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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My doc asks me how I'm feeling and leaves it to me to decide if I need to up my abt dosage or lower it.
I was on maintenance doses when I got my latest tick bite and everything reactivated.
Don't know if it reinfected me or if I had an antibody reaction to the bite.
I didn't rash out this time but the bite site looked like a giant hive and itched like H**L.
First infecting bite didn't but I got the bullseye rash on schedule so I suspect this last bite caused some sort of antibody reaction with me.
I was talking to the doc before that happened about pulsing my antibiotics, two weeks on, two weeks off.
That's how good I was feeling.
And that is the point.
Only YOU know how good you are feeling.
I also sympathize with you about your apprehensions.
I have proven to the doctor that I feel best when I am on antibiotics and he sees that now.
Going off them completely scares the crap out of me too.
Good luck.
We are all in this fight together.
-------------------- Why don't they make Front Line for humans? Think about it! Posts: 78 | From North Eastern Missouri | Registered: Oct 2009
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Yes, definitely excellent advice here.
Medication will make you feel worse before better due to herxing.
As far as stopping treatment, if you trust your Lyme Doctor, I would follow his path. I know mine likes to give me antibiotic breaks here and there. Not for long, but it helps to know what you do and don't still have out there.
He/She can always restart you on a new protocol.
You mentioned taking Diflucan. That would be for candida and perhaps your doctor wanted to clean some of that out before moving forward.
There are so many variables or thought processes that could be going in to this, so if you are uncertain, I would definitely ask your doctor to help you to understand or clarify what the reasoning is. Good luck and keep us posted.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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lyme in Putnam
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Member # 11561
posted
Was in remission 8 mos, so ok, I kept telling my husband thnk god itover. Stopped orals also. Who did I kid but myself. In endless mental anguish since 09. Never again. Detoxing herbs are detoxing, nothing killing the Lyme cos. Have o get on treatment soon. Off all sept. If I get ok, I'll never get off, rather go through losing a part of my body than losing my mind/soul. Sorrry to get deep, but in pain, like all as u can see.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Good luck.
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