This is my first post. I started having symptoms in November 2009...total autonomic nervous system dysfunction (life-threatening heart arrhythmias, chest pain, sky-rocketing BP, seizures, coded once in the ER, entire body tremors and muscle twitching), then in March, it escalated to all of the brain stuff...inability to concentrate, feeling like I have been deprived of a week of sleep and then drank a six-pack 24/7 since then! I went misdiagnosed until April, when I saw a LLMD who said that I have stage 3 lyme disease. I have been on antibiotics since 4-17-10 (biaxin and ceftin). 'Saw my LLMD last week and he added paquenil and welchol. My question is this...when should you start seeing some symptom relief...especially with the brain stuff. I have been unable to work or drive for months! It is very depressing and frustrating. Any thoughts would be appreciated! Thanks!
-------------------- ? 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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posted
You seriously drank beer for 3+ months??? Hope I read that wrong!!! That will completely ruin you when you have Lyme! Makes it MUCH harder to get well.
It could take months or MORE to begin to feel better... so hang in there and learn patience right away!! ( get it?? )
Do all the reading you can so you will be armed with information on how to improve your chances of beating this thing!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
took me about 7 months to see significant improvement. i was sick for a year and a half.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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posted
Thanks! I "felt" like I had been deprived of sleep for a week and then drank a 6-pack...I didn't really do it! Good grief...I have felt so bad for over six months...I have no desire to even think about drinking a beer...let alone doing it!
-------------------- ? 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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posted
Thanks, Erik! Did it take you 7 months to feel ANY improvement...or a lot of improvement? And...did you have brain symptoms and if so, how long until you saw some improvement there?
-------------------- ? 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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posted
Tutu...did you have the drunk feeling and if so how long after the initiation of antibiotic treatment did it begin to resolve?
-------------------- ? 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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posted
i had some neuro stuff going on, tingling, burning, amongst other things but nothing brain related.
there were a few days here and there during the first couple of months where i would feel o.k. but as treatment progressed i would have more good days.
im still not 100% and its been about 11 months but im A LOT better than what i was. it takes time, patience is needed or you'll go crazy trust me. im not a patient person at all.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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posted
Kitty - Not really dizziness...more like feeling drunk/hungover ALL the time...feeling like you have had no sleep and then drinking a 6-pack.
-------------------- ? 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you taking liver support such as Milk Thistle, NAC, Dandelion, etc.?
Adrenal support?
Are you taking magnesium, etc. Magnesium is a huge help for regarding lessening seizures. Andrographis has also saved my life in that regard by strengthening the seizure threshold.
Other supportive supplements?
Key supplements are really important. Still, I am so sorry to tell you that this is just part of the deal for a while now. It can get better but it will take a long time. Knowing that helps us know how to best plan our day so that we can take the very best care of ourselves as possible. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, I wondered if you've seen basic support links yet so I checked your posting history and they've not been posted for you. You may have seen them, but to be sure, here are the very basic ones for a start.
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
=====================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I've had the "drunk feeling" a lot. The lyme gave me Labyrinthitis, which is an inner ear / vestibular issue. Not fun.
I'm on week 5 of treatment and have noticed my brain is a lot better and fatigue is gone. I still have symptoms, mainly eye / year. But otherwise I've seen some improvement.
I'm male, 35, 6'2", 215#, and on 400mg of Doxy / day plus pulse 1000mg Flagyl 3 days every 2 weeks.
I was bad for 3 months..mainly neuro stuff. Really bad for 4-6 weeks of it. I have an abnormal brain spect. But otherwise I"m okay.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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posted
Keebler - Thanks so much for all of the info!
Erik - I can relate...I, too, am a very impatient patient!!
-------------------- ? 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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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
18 months of abx. Had undiagnosed lyme for 7 1/2 years. It was a roller coaster ride with many setbacks, but I eventually went back to work after a 2 year medical leave. I couldn't drive, read, or watch TV, a real zombie at one point.
Hang in there.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I've been treating for 3 months-and I got nothing yet. Still same old symptoms. I have good days, bad days, and WORSE days.
Now i'm not treating the right way cause the abx messes with my stomach. It's like I'm never going to get better.
posted
Hopefully you will get better, littlebit! I have hope that I will too. How long have you been sick and with what types of symptoms? What meds are you on?
-------------------- ? 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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-------------------- ? 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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-------------------- ? 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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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Almost 2 years, but still feel like crap. Brain fog is much better; symptoms like muscle spasms and twitching much better; and fatigue and pain slightly better.
From what I can tell and what I have read, ppl that have had lyme for over a year take the longest to get well. Seems you are under that range, so hopefully you won't be here too long.
Also from just observation and talking to ppl with LD, my guess is most get well somewhere between 2 and 5 years. Not to say it could be more or less; just seems to be an average.
I know of a few ppl that started treatment within 4 to 6 months of getting ill and were well in approx 6 months. So that seems to back up my theory that delayed treatment of over a year means longer treatment.
I am only saying what I have observed in general!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
My LLMD has a rule of thumb for recovery time: if you were untreated for less than a year, then the recovery time equal to the months you were untreated.
Eg 6 months untreated = 6 months to recover
But if you are untreated for over a year, then it could be up to 2 years of treatment or more.
I was sick and not diagnosed for about a year.
I am now in month 20 of oral antibiotic treatment.
Up until month 17, it felt like I was not really improving at all and I felt absolutely dreadful most of the time(mainly neuro symptoms)
However, I kept a journal, and looking back at it helped me to see that I was making very gradual progress.
In the last three months my improvement has become significantly faster and noticeable and I rarely feel dreadful now.
I am going back to 100% work after 2 yrs of half time with reduced duties.
Keep at it and hang in there
Posts: 41 | From Victoria, BC Canada | Registered: Jul 2009
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posted
I have been sick for a long time (probably 20 years). I have been in treatment for 17 months. I have bad days, worse days, and horrible days. I keep trying hoping I will get well.
But, I hope since you have been sick less, you may get better quicker.
Good luck to you!!
Posts: 893 | From Florida | Registered: Dec 2008
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Good grief...I have felt so bad for over six months...I have no desire to even think about drinking a beer...let alone doing it!
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