posted
I recently posted a whole big long post about how i stopped meds for 6 weeks or so, and became symptom free. I believed it was a result overmedication.
I was wrong. But i learned a lot from this.
My symptoms are back .. they have been for about a week now. However, things have changed .. and i'm trying to take a fresh approach to this.
I've been going through this up and down cycle for months now - feel better for a few days, crash and feel bad for a few days. Seems like since i stopped meds the cycle has slowed down.
I guess i hit a little bit of an extended "upswing" and got trigger happy on the symptom free thing. sucks .. really.
does anyone have this? My symptoms are somewhat "vague" fatigue,headaches, lower back aches, muscle and joint soreness. And this all over terrible feeling. It slowly disappears over the course of a week or 2, and then comes back suddenly. It's weird.
LLMD says the up and down is a hallmark of lyme, does anyone else see this in themselves?
Anyway, i'm starting omnicef tomorrow. We'll see what gives.
Sorry for jumping the gun on my last post. I guess at least it sparked some healthy debate.
Posts: 339 | From Outer Space | Registered: Aug 2009
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Oh, I am sooo sorry. You poor thing. I hope you start feeling better quickly. What a bummer.
Try to keep looking at your situation from all different angles so you can keep finding missing pieces to your puzzle. That's what I'm doing. Check into KPU. And definitely heavy metals. All of this stuff matters. I feel like we cannot get better by meds and supplements alone. I think we need to find out what allowed our internal terrain to become what it was in order for these infections to have such a field day. And take over!
I hope answers come to you soon.
Wishing you well, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I'm sorry to hear that. It would have been nice if it was all over with, but as we know with Lyme.it.is.just.not.that.easy.
I hope that you and your LLMD can work towards real recovery now and you can get your health back once again.
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I'm sorry too. Had a human day half of Friday and paid for it saturday and sunday. Your days of feeling good will last longer and longer, but I've been told repeatedly, slow and steady wins the race. keep on going and you'll see improvement again.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Oh Yes, I posted about the same thing, except I have never had 6 good weeks,just a good day every now and then. You can read my post. Can't remember how I titled it but posted around the 17th..
No wonder we doubt our treatment, I actually feel better when I stop everything for awhile then the monster is back and I start popping the pills.
I hate to be negative but I don't think we ever get over this unless its caught in the beginning stages.
Good luck to you, especially during the holidays. That is what I am dreading , most of the children and grans will be here but will I be up or in the bed. This darn never knowing is something that is hard to deal with.
My symptoms are about the same as yours, know what you mean by the all over terrible feeling. My emotional state is the bits its like I go into a crying deep depression and so exhausted I feel I am dying.
No answers but sure can relate. I am trying to hold off on meds till after the holidays hoping I will make it.
Prayers...
Posts: 1058 | From VA | Registered: Oct 2010
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posted
glad you posted this, I often question wether my symptoms are from the meds not from the illness.......
my DR said no its because your sick but you always wonder.......
i have said the only way you would really know is to come off everything and see what happens.....but that is very scary to think what would happen.......
Like happened to you it would feel ok for a while then the beast would rear its ugly head......then what??? .........
was it your Drs idead to come off the meds or your own??
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Happens all the time! Welcome back.
-------------------- 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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posted
Sorry you were not cured. In future, please do not malign the doctors in your posts, as you did in that previous one. This was offensive, and if your doctor knew you were doing this, you could be blacklisted, or at least should be.
Posts: 8430 | From Not available | Registered: Oct 2000
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Last i checked my name wasn't listed anywhere on this site, and i never mentioned the name (or even general location) of the doctor i was seeing.
One person PM'd me about who the doctor was .. and i said this:
"No complaints overall. I just had to do what was right for me. If i still have issues i will go back."
Posts: 339 | From Outer Space | Registered: Aug 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Don't worry about it 3030....your previous post that is. you don't need to be repremanded publicly anyway. It's not conducive behavior at all.
Sorry that you're going to have to continue treatment. Look at it this way, you felt great for awhile and you will again. should be easier to get there this time....stay the course and you've a good chance of posting that you're 'well' again!
best, feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I agree with feelfit. You should feel safe to share (and vent) on this site.
Posts: 2238 | From East Coast | Registered: Jul 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm sorry to hear this. Thank you for posting so that others can consider the benefit of your experience.
You were well on your way to getting well before and I've no doubt if you follow the expert advice of your LLMD you can get back there and beyond.
3030 and others - just so you know, patients have been discharged by their doctors from comments that they've made on this site whether their names were made public or not.
Lou has a point in my opinion. It's upsetting to see someone give the other side ammunition against our LLMD's, especially when based on current knowledge and experience, we can see that the advice from the LLMD is valid. The vast majority of LLMD's are very caring individuals who are often putting themselves on the line to help us.
REMEMBER, posts on lymenet often show up in a search on the internet for anyone to see. Based on the posters location and description, LLMD's can be gleaned as can the poster. It happens.
the3030club wants to know if others have the phenomena of felling better then worse in cycles.
YES!!! This is the reality of lyme. It is relapsing and remitting. This happened to me for a number of years until I had NO good days and felt VERY sick 24/7.
The relapsing and remitting nature of some spirochetal illnesses is one reason why it is so hard to figure out what is wrong and is also why it takes so long to figure out that one is dealing with a chronic illness.
Hang in there. Live and learn.
Terry, I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
OK, people, what is posted on this forum is sometimes used against us and our doctors. I would have thought that people who are not newbies, at least, would know this. Here is what 3030 wrote in that previous post. I am offended and all the lyme doctors who read it would be too. Show this to your doctor and see what he/she says, if you think it is OK to say such things. In fact, 3030 should show it to his lyme doc and see what the reaction is, see if he thinks this is harmless. If a doctor had this said about him, he would be justified in giving the patient the boot.
-------------------------------------------------
quote from 3030's previous post:
"6 weeks ago i went to my regular doctor. After telling him my whole story (and having reviewed the extensive write up sent to him by my LLMD) he gave me one simple instruction.
"Mike, You need to stop taking all this ****. You're poisoning yourself"
If you want to detox, stop eating a pound of drugs every day.
I was terrified, i was so sick, i was so scared to get even worse and i didn't want to delay getting better.
But then i thought: Why would he say this if he didn't truly believe it to be true. He's not treating me for lyme, he's not in the hot seat. He has nothing to gain by suggesting i stop treatment. Maybe he's right. I was giving my llmd 300 bucks a month for a follow up visit and paying another 300 to them for supplements, so why wouldn't they want me back.
So i listened. I stopped everything. No drugs, no supplements. No Probiotics.
I AM NOW SYMPTOM FREE.
It has been roughly 6 weeks since i stopped all meds. i didn�t get better right away. I would feel a little better for a few days, and then worse, and so on. But the general trend was improvement from the day i stopped. I kept a journal of my symptoms so i could make sure i was getting better and not worse. I honestly might not have even guessed i was improving for the first few weeks had i not kept a record.
As soon as i felt up to it, i started drinking coffee again, eating sugar and bread, drinking beer. Not in excess of course .. but the point is i went back to doing things just as i had before i was sick.
I can�t speak for everyone, but i continued to be sick because i was overmedicated. I feel that my LLMD here in NY would have keep filling that script for years. I also feel that if i went another llmd anywhere in the country right now i could walk away with a lyme diagnosis and about 8 prescriptions.
My regular doctor was right. My LLMD was wrong. You can be over treated for lyme, and it will make you feel like you�re still sick. It absolutely happened to me.
All i had to do was to just stop poisoning myself.
Please truly evaluate your situation accordingly.Get second Opinions. If you�re not getting better really think about who gains from your continued treatment."Posts: 8430 | From Not available | Registered: Oct 2000
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Wow! You guys really won't let it go. If you're so afraid of the wrong people reading this, why are you posting it again???
Sorry to hear that you are feeling ill again, 3030 but I'm sure it won't be long before you're better again. Stay positive!
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
lulu - the reason I am posting is explained in my posts.
It's important for those who haven't been here very long to understand possible consequences.
As far as not letting it go - we hope that others will learn without having to go through the pain of a relapse. Sorry if that irritates you.
Posts: 6286 | From Oregon | Registered: Jan 2006
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What are you gunning at? How is this helpful in any way? You're giving me a hard time for considering both sides of the coin,even when i've admitted that i was wrong, and you left out the last BOLD portion of my post where i told everyone that my llmd treatment got me well in the first place. My story was based on only my experience and was not a recommendation for ANYONE.
You're suggesting, that even after i admit that i've mad a mistake i take further action that could prevent me from receiving proper treatment!?!?!?!
If i can't post my thoughts in this forum without slammed for sharing them, i'm just not going to post them at all. You've made me feel unwelcome. Thanks.
Posts: 339 | From Outer Space | Registered: Aug 2009
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Thanks for the help. You're right. I wouldn't want to post anything that would cause any more problems than Lyme Docs already face.
I know they take a risk treating us, and i know this is Ultimately what Lou was getting at.
I appreciate you making the point without being vindictive.
I'm going to delete my old post.
Posts: 339 | From Outer Space | Registered: Aug 2009
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
TerryK, I was addressing that comment to Lou.
The only thing I find irritating, is people being bashed for expressing their opinions and seeing how some don't share in the happiness of a possible success story.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I think 3030's experience with a non lyme literate doctor is right on. It is an all too familiar situation.
New ppl need to be made aware that this kind of misconduct takes place and thus why it is important to find a LLMD when treating Lyme Disease. I don't see the harm in telling the whole story.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
To be fair, My Regular doctor is a good person. He truly wants me to be well. Most doctors are just not well enough educated when it comes to lyme.
I think GP's are ID doctors are painted as jerks all too often. Maybe some are, but i think others just don't have the info.
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
"OK, people, what is posted on this forum is sometimes used against us and our doctors. I would have thought that people who are not newbies, at least, would know this. "
Maybe your beef should be with the type of people who would actually use things from this forum against doctors and patients.
Not with people who are trying to share their feelings to help others gain perspective and help get themselves through a tough time.
And really the best part of this is, in the SAME paragraph you urge people to do JUST THAT!!!
"Show this to your doctor and see what he/she says ....... he would be justified in giving the patient the boot.Posts: 339 | From Outer Space | Registered: Aug 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
amen 3030. best on your recovery. it is the 'tone' of the poster that grates at me over and over.
there is a nice way to get a point across. we're all suffering...
don't stop posting 3030...you just told what you thought was your 'truth'. nothing wrong with that.
feel better soon.
Posts: 3975 | From usa | Registered: Aug 2007
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
3030- Glad you are back on the road to recovery. I hope you do continue to post your thoughts because they are helpful... and you are welcome here...
Lou comes off a little harsh sometimes... don't take it personally. Lou has been around a lot longer than I have. He has probably seen things I don't even want to think about. Experience is a blessing and a curse.
I have to admit, when I first read your old post I was thinking - oh no, it's hard enough to get testing and treatment. This is going to hurt us.
To the contrary, I believe that post helped me and a lot of other people to see things we may have not been looking at before. It is important to look at all angles, get second opinions, call in experts...
General practitioners are not experts. They are taught that Lyme does not exist.
There are too few doctors for who can and will treat LD and TBD ... far too few.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Just weighing in here because this post popped into my head after the week I've had.
Had what seemed to be a stomach bug for a week now, so I haven't been taking any of my abx, supplements or herbs because of the feeling tht I'm just going to hurl anything that goes into my mouth.
Strange thing is that although my stomach is really making me miserable, I have NO SYMPTOMS of lyme, ehrlichia or the possible babesia that has been causing my air hunger.
I've been wondering myself if some of my sx lately aren't just GERD and if I really need to be taking the abx anymore.
I'm sure things will kick up again as soon as I get the stomach crap under control.
My LLMD is out of the office till next month, so I can't call him, and I want to avoid my GP if possible, because she gave me a hard time the last time I was in. She doesn't approve of my lyme tx, surprise, surprise.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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posted
Well. I will say that when i stopped my ABX my symptoms slowly wound down over several weeks, and then came back. I never got worse than i originally was.
I think it was just a long "up" in what has been a very cyclical set of symptoms.
Who knows, maybe see what happens. I would ride it if you're feeling good. I did. But i was wrong about being better and my symptoms came back.
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
****Please stay on topic. The topic being that 3030 needs more treatment. Let's not further debate on what should and should not be said regarding LLMD's, everyone has made their points. Thanks.****
PS I'm debating about whether to edit this thread ..... but for now, it remains as is.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
3030, sorry it wasn't lasting. My symptoms were cyclical. That was what finally made me look at something other than abx, I hated the ups and downs and really wanted to try something else. I figured if it didn't work, I could always go back to abx.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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