posted
First off hello after a few weeks searching the web I found this very informative site.
I was bitten by a tick in late May had no rash or fever and ignored it (stupid me). In late June i started having symptoms of tingling and weakness in right leg which spread to the arm/face within a few days. Symptoms would ease or return day to day.
Initial blood test was negative, triggering docs to test for blood clots, mri's ect (all negative. Western blot finally came back around mid july as positive active.
ID doc started me on 21 days of doxy 100mg twice a day. Symptoms continued and spread to stiff neck, insomnia, heavy head, vertigo and tingling in face and tongue. However, they would migrate from spot to spot over a day or two or even less. No real joint pain other than occasional knee and ankle pains. seems to be more nervous.
After 2 weeks on doxy, doc upped dose to 200 twice day, had a bad week after that then lowred dose back down. Finished 5 weeks (35 days) of doxy. Most days functional some days exhausted but it seemed to be going as the cdc/id guys planned.
Once iff meds I had symptoms but they would come and go quick first week off doxy, seemed to be getting better.
Now - last 3 days symptoms coming back stronger including heavy eyes or eye pain/dry eye. Head pain, pain near ears/bones.
Docs may reccomend IV or spinal tap being that it seems like the more neurological. But does it seem likely to be neuoroligical from such a recent bit (2 - 3 mos.) I visit him soon
I am also taking cats claw, taurox, fish oil, lyme nosode and cholidal silver.
I am curious if anyone has/had any similar symptoms and their treatment.
Also pardom my ignorance as this is new to me. I noticed the LLMD (is that a ID or Lyme specialist?) also I noticed that doctors cant be mentioned - can someone pm me NJ or NYC docs that specialize in Lyme.
Thanks in advance !
Tony
Posts: 13 | From NJ | Registered: Aug 2007
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Hopefully someone has PMed you info regarding an LLMD near you. If not, try posting in Seeking a Doctor. You can find a lot of information using the search button. Many here have not had good experiences with the infectious disease doctors.
The LLMDs tend to have alot of experience with lyme and other tick borne diseases. You want someone with that experience otherwise you might not get the treatment you need.
Posts: 984 | From San Diego | Registered: Nov 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You probably felt worse on the higher dose of doxy because it started killing off the Lyme causing a herx.
As much as ID docs would like us to think that a single round of abx works, it doesn't. Most take over a year for treatment. It sounds like a long time, but there are other bacterial illnesses that have similar treatments (tuberculosis, for example).
I'll PM you my LLMD's name.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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If anyone knows a NJ or NYC area (Bklyn/SI) LLMD please fwd.
Being that it's a recent bite, does it seem likely that a course of antibiotic for months may be necessary? Would an IV course be better for my symptoms vs going back on Doxy at the higher dose?
Also did anybody have simolar symptoms that migrated around so frequently?
Posts: 13 | From NJ | Registered: Aug 2007
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Tony B,
ID docs stands for IDIOT docs when it comes to Lyme,,stay AWAY from them,,,Unless somebody has seen them and they are determined 'safe' to see!!!
find a real (the best you can get to)GOOD LLMD that you can figure out. your health and welfare in really on the line here!! We have enough old chronics here,,,we dont need any more!!(LOL)
The higher dose was really helping you,,,go back on it for now IF you can!! Sounds as if you had a decent doc,,,altho less than perfect!!
Selection of the LLMD is probably the hardest part of all,,,AND if it doesnt mesh with your personality,,,go find another. Stay on aggressive treatment till waaaaay past symptoms and then some.
You have MUCH reading to do,,,have others around you help read,,and understand,,, where you are in life right now!! Learn,learn, learn,,,so much to learn,so little time!!
Keep on keeping on and stick around for GOOD support,,best place to be ,,,'right now'!! really--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Welcome Tony*)*!)!!!!!!!!!
Sounds like you belong here*)*!)!!!!!!!!
-------------------- 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
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
p.s. Yup, had all those symptoms in beginning- got much, MUCH worse!!! Hope yours doesn't go there- get a good LLMD asap*)!!!
-------------------- 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
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quote:Originally posted by CaliforniaLyme: p.s. Yup, had all those symptoms in beginning- got much, MUCH worse!!! Hope yours doesn't go there- get a good LLMD asap*)!!!
Were you treated right way, though? And what treatment did you to do to get better?
Posts: 13 | From NJ | Registered: Aug 2007
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posted
Hi Tony. Because a month went by with no treatment, it's going to be harder to get rid of. Don't believe the ID duck when he/she tells you you're "cured" and that you have to live with the remaining symptoms.
You CAN get rid of the symptoms by continuing treatment.
Personally, I would NEVER submit to a spinal tap unless my very life was in immediate danger. No way, Jose`!
Keep reading here. I'll send you some names of LLMD's. An LLMD is a Lyme Literate MD. ID ducks do NOT like LLMD's and will tell you they are quacks!
WEll, my very excellent LLMD "quack" brought me back to good health after being ill for years and years!
Migrating symptoms are VERY common with Lyme disease,,,,very.
here is a link with tons of info....see if you can find info on spinal taps....or do a search here and read some horror stories on them.
A spinal tap, by the way, is only 20% accurate in finding Lyme disease....forget it.
posted
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
Posts: 96239 | From Texas | Registered: Feb 2001
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quote:Originally posted by Lymetoo: Hi Tony. Because a month went by with no treatment, it's going to be harder to get rid of. Don't believe the ID duck when he/she tells you you're "cured" and that you have to live with the remaining symptoms.
You CAN get rid of the symptoms by continuing treatment.
Personally, I would NEVER submit to a spinal tap unless my very life was in immediate danger. No way, Jose`!
Keep reading here. I'll send you some names of LLMD's. An LLMD is a Lyme Literate MD. ID ducks do NOT like LLMD's and will tell you they are quacks!
WEll, my very excellent LLMD "quack" brought me back to good health after being ill for years and years!
Migrating symptoms are VERY common with Lyme disease,,,,very.
here is a link with tons of info....see if you can find info on spinal taps....or do a search here and read some horror stories on them.
A spinal tap, by the way, is only 20% accurate in finding Lyme disease....forget it.
Hate to sound like a broken record but if one is bitten in May - what is the period for when the infection would become chronic?
I assume I am still prior to that.
Bit in mid May - Started Doxy on Jul 12 - Aug 17th.
And are theri tiers of chronic lyme, meaning if its in the early stages of chronic does that make an treatment easier.
Posts: 13 | From NJ | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
There are so many variables, you would really need an LLMD to answer these questions about length of treatment, etc. It won't be exactly the same for each person ... there is no simple answer.
I can tell you that my daughter, who is not as sick as I am, is not having as difficult a time as I am with treatment. I think it depends on how sick you are.
www.ilads.org has a lot of information that you might find interesting.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
No one can give you a definite time table for treatment.
Ticks also transmit diseases other than lyme that you can test negative for and still be infected with.
Presence of a coinfection or coinfections can change the nature of a patients treatment.
This is why when you have lyme disease it is best to be treated by a lyme literate dr (llmd).
quote:Originally posted by adamm: I was bitten around the same time you were, and my symptoms are
almost exclusively neurological.
I know how hellish what you're going through can be. Just try to
maintain a positive outlook to the greatest extent possible--if
you start seeing an LLMD and receiving the appropriate
treatment soon, you
should still be able to kick this thing.
Best wishes for your recovery,
Adam
Thanks, doing better. Can i ask yo what yoour treatment was and if the symptoms we have mean this is in the central nervous system?
Posts: 13 | From NJ | Registered: Aug 2007
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posted
I would definitely see a lyme literate medical doctor before I ever submitted to a spinal tap. Mine was a horrible experience (the spinal tap, not the visit to the LLMD). If you do not have a LLMD, go to seeking a doctor on this forum and type in the area where you live. Best wishes.
Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10224 | From Illinois | Registered: Aug 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Tony, I was diagnosd right away and treated with 30 days of Doxy and was *almost& well than rediagnosed Post Lyme Syndrome told I would have to live wiht whatever was left and then declined dramtically over the next year while my docs refused me treatment of any kind- and then rediagnosed "multi-system progressive neurological disease triggered by post-Lyme syndrome" and then began going into dementia and had 9 months of IV Rocephin bless my LLMD I had finally found- and how strange, months 1-6 no gains and hten 7-9 LIFE LIFE LIFE!!!!!!!!!!!!
I am 99.9% and have been for over 6 years now- have to stay on abx though (amoxi) or I decline quickly- but I had major neuro Lyme- chorea- could no longer walk normally- encephalopathy-
Was reading old doc notes and found this gem, "Cognition remarkably altered." early on!!!
(Oh how cute, her cognition is remarkably altered give her some ABX!!! Sadists!!)
Actually when I got really bad, after lETTING me get really bad for a whole year, my PCP broke down and offered me any orals I wanted!!! But orals didn't help me anymore- Me bitter? Oh heck, maybe a little*)!!!
Take care TOny- and spinals are mostly negativce re research of Brorson & Brorson, the Norweigian researchers, brothers, who showed that spinal fluid makes Bb convert to cystic form which tests negative-
Hope you find a good LLMD!!! Best wishes,
-------------------- 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
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