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» LymeNet Flash » Questions and Discussion » Medical Questions » how long does it get worse before it gets better

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Author Topic: how long does it get worse before it gets better
big lenny
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if been on steady treatment now for about 2 months straight without stopping and steadilly am feeling much worse.any hope in sight, also does anyone experiance moments of uncontrolable trembling of hands? this is new for me
Posts: 259 | From new york | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
tailz
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Forever, in my case.

I'd buy a gaussmeter. I seem to improve somewhat if I avoid any additional electromagnetic fields, though my home has higher fields than most homes I've tested thus far, and I have to leave home to grocery shop, etc...

I made the mistake of sitting in my neighbor's kitchen last night in a 7 milligauss area for a couple of hours.

I woke up severely photophobic last night, sweating, shaking.

Nobody here believes me, but electromagnetic fields are causing chronic infection. Microorganisms have a 'magnetic sense', and the immune system relies on the earth's electromagnetic frequencies to fight infection.

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painted turtle
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Big Lenny,

It might depend on how long you have had the disease undiagnosed, I think.

Not to discourage you or anything, but it took me a full two years before I saw anything consistent.

It can be a very long haul, unbelievably so.

Heading into my third year of treatment, I continue to improve. Don't know what may be permanent but we'll see.

--------------------
www.lymefire.blogspot.com

Posts: 855 | From United States of Mind | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
Aniek
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Lenny,

It really is different for everybody. It took me 7 months before seeing any improvement. I had Lyme 17 years before diagnosis.

I haven't had hand trembling, but I did develop motor tics that sometimes caused my hands to make very small, fast movements that looked a lot like tremors. The motor tics aren't gone, but they have been minimized with treatment and B-12.

--------------------
"When there is pain, there are no words." - Toni Morrison

Posts: 4711 | From Washington, DC | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
CaliforniaLyme
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Dear Lenny,

I continued to progress through 18 months of antibiotic treatment, a full year of orals and then 6 months of IV Rocephin with getting sicker & sicker. Yes, my hands had terrible tremors.
Then in onth 7 of IV I turned and in the next 3 months- by month 9 of Ropcehin I was almost well- transitioned on to torals and got to 99.9% and now am 100%, no symptoms- but still on maintenance abx as I am breastfeeding-

I got very very ill with very bad neuro Lyme and I have no symptoms today and have lived a normal life for the past 7 or so years now!!!

Sometimes it takes time- you may also have coinfections which need to be addressed- that was why my turning took so long I think- we discovered after treating the Lyme that I had had seronegative Babs the whole time!!!

Take care, take heart!
Sincerely,
Sarah

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
riverpatrol
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Hi Big Lenny,

This is always the impossible-to-answer question. Even my LLMD couldn't answer it for me.

My experience: I went un/misdiagnosed for 2 months before starting treatment. I was full blown with major rheumatoid (and other) symptoms at that point. Yes, treatment made it worse, but I followed the protocol like clockwork, determined to beat the bug.

I can say it was a good 2 months before I felt that the battle was finally turning to my favor. I still flared and herxed, but I felt that the lyme was finally starting to release my tissues back to me.

My symptoms have gradually, frustratingly slowly decreased from that time - four months total now. My flares are now less sever, I can't remember the last time I really herxed, and other than joint pain and some inflammation most of my symptoms are gone.

I started physical therapy in Sept., but the recovery process to rebuild the major amount of muscle mass I lost is very slow. The healing process is very slow, probably because the bug isn't toally defeated yet, and because my immune system just isn't what it used to be.

I am still unable to work though, and with my current rate of progress it might be a good 2 months before I can go back to work.

I hope this information helps you somewhat. It is always hard to find an answer to this question from someone with early or late disseminated lyme.

Posts: 69 | From So Cal | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
onthemend
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Hey Big L, you'll get better!

What's your dosage? I started out very light doxy - 200 mgs - and I could literally feel it stop the downward spiral in my health. BUT, symptoms that were entrenched did NOT really improve.

After about 6-8 weeks I actually got dramatically worse - a lot of brain-buzzing, dropping stuff, falling over, burning skin, etc, yikes! Including - hand tremors! I couldn't put on makeup, dry hair, write, etc. My doc took me up to 400 mgs doxy at that point and I experienced almost immediate, very dramatic improvement. Including no hand tremors anymore.


9 months of doxy for me, it's just my eyes, my brain & my sore lymphs that still really bug me. The other 35 or 40 horrible symptoms are gone, or just very occasional visitors!

Keep the faith. The process of getting better from LD is not like any other illness you've
ever had, and it's just very hard to get that through your head! I lose faith just about every day until I remember (scary!!) how bad it was and how very, very far I've come.

onthemend

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TheCrimeOfLyme
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It took me six months to see any improvement.

It took me two and a half years to not feel like I was dying every minute of the day.

And, i am still battling a SMALL amount of "leftovers" so to speak almost 5 years later. ( but no relapse, just some persistent buggers of symptoms)

--------------------
You want your life back? Take it.

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zil
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I'm on month 3 of treatment and feel worse. A lot more total down days. I have fine tremors of my hands at times.
Posts: 383 | From Ar | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
big lenny
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thank you all for the input it is very reasuring and is going to help me get through this1
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triathletelymie
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Up

--------------------
? 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  |  IP: Logged | Report this post to a Moderator
blinkie
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It took me 16 months before I was feeling more "well" than sick, if that makes sense. Lucky for me, I got pregnant 6 months into treatment and felt better during the pregnancy.

The abx I did for that 10 months gave me major improvement. So that when I stopped, I was out of the tunnel of darkness and about 80% improved. I was lucky in that, I didn't have to feel worse for that 10 months like i should have.

I still credit it to the 16 straight months of abx.

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CherylSue
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After 18 months of abx, I went back to work. Still on abx at total of 3 years now. Have minor symptoms, especially when I'm tired. At least 90% improved.
Posts: 1954 | From Illinois | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
frikfrak
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hi

sorry to say but my son was diagnosed back in 12/09...still doing worse, much worse. did orals for 3 months, then iv rochepin for 3 months, now on 3rd month of iv doxy and still no better, worse. Mentally only..seeing 2nd LLMD with the doxy. has started laughing uncontrollably while on doxy, noones knows why, not doc or pysch doc. Still going and we will keep going till he's better....Good Luck and GOD bless.

Posts: 158 | From NJ | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
   

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