posted
I just got diagnosed and I know very little about Lyme..
Some people are telling me its not that big of a deal, but as im lookin at forums(not just on this site) it looks pretty freakin serious..
Im not feeling as bad as some of you sound, I have lower back pain,omg right after I typed that I just got a big shot of pain right there..
my fingers feel kinda a tight but its not that bad, my neck feels a little tight and Ive had a come and go head ache..
I just got put on antibiotics today Just took my first pill an hour ago..I hear some of you get worse after taking meds? Im on DOXYCYLINE 100 MG CAPSULE.
Soo im just hopin some one will show me the ropes I have no idea what to expect just hoping for the best..
I work out,and I smoke/drink on occasions will my lifestyle have to change? Is this permanent or does it go away?
I also think i got this from my dog, does this mean my dog has it too? thanx
Posts: 8 | From NJ | Registered: Jun 2008
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posted
how long have you had it? if an id doc gave you 100 mg. 2x a day, definitely not enough. you need to see a lyme literate doctor. also need to get tested for co-infections.
how long have you had it?
I am in NJ. where are you in NJ? i can help you find a doctor.
believe me when i say this - IT IS DEFINITELY A BIG DEAL!!!!! People just don't understand. If you are early on, get the right treatment, right amount of abx so you don't become chronic.
I am not trying to scare you, just want to help you so you get well fast and don't have to end up back here one day....
Posts: 871 | From NJ | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
--
Whoa -- that was fast. Thanks for fixing the post.
Now, if you want to delete the other, you can go back and to the edit thing, but when on the edit page, in the upper left corner is a little delete box.
Just check that and then click on "add reply" and it will vanish.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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1. I would order The Lyme Disease Solution by Singleton - through Amazon.
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2. check out www.ilads.org and download the ILADS treatment guidelines and focus on what they say about self-care.
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It's advised to avoid aerobic exercise until better. working out - if you feel okay - is good - but gentle. It's all in the guidelines.
If you need help as you stop smoking, ask your doctor. there are some complementary supplements that help adrenal function that may help support your desire to breathe in only fresh, clean air - as oxygen is good to help rid bacteria.
And the toxins from cigarettes add to the stress this illness puts on the liver. For that reason, too, the doctors who have written the treatment guidelines say that one reason for treatment failure is the use of alcohol.
I think you will find you feel better without it while on treatment. your liver has a lot of work to do to get you past a very toxic infection. It can't handle any more.
Ask your doctor, too, for liver support. Be honest with what you have come up around this and ask for help for treatment is not just about a pill to kill infection but also about what goes in to nourish your cells as they fight the good fight.
---
Whatever seems like a sacrifice to you now is something that would be quite small if you don't do all you can to treat this aggressively as possible now during this most important window of time.
This window of time will never come again. You get one chance at treating this early.
As you will read, if early treatment is not successful, then, yes, this can go on to be a very serious matter affecting every function of your body and every aspect of your life.
Nothing but the very best personal care if you want this to work.
there are many here to help with that and it may be hard but, it's nothing like what could happen if this protocol is not approached with the upmost respect and diligence.
Best of luck.
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[ 14. June 2008, 02:16 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Are you taking 100mg of doxy a day, or twice a day??
For best results, I would want 400mg per day.
Yes, you will likely feel worse once you get rolling with that doxy. It will bring out old Lyme symptoms, new ones you never had before, and intensify the ones you have now.
Sounds like a bunch of fun, huh!?
Be SURE to buy some good quality acidophilus. Many here use Theralac. It's my personal favorite.
Here is the Lyme symptoms list. I wonder if you have more symptoms of Lyme that you didn't realize are from Lyme?
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
++++++++++++++
So, did your GP diagnose you?? You need to begin your search for a Lyme Literate MD, and LLMD as we call them.
WELCOME!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Your dog should be evaluated by a vet as soon a possible.
This can be very serious in dogs, too. An old college friend of mine in Mass. lost a chocolate lab to lyme last year.
You've just been diagnosed. But how long have you had Lyme? That is, when did signs and symptoms first start? That's very important.
If it's early Lyme (signs and symptoms 3 months or less) then it's doxycycline for a MINIMUM of 6 weeks.
If it's longer than that it's turning into a more serious disease. You must get to an LLMD (Lyme-literate MD.)
If you've had signs and symptoms one year or more, technically it's called chronic Lyme; neuroborreliosis, a brain infection of the Lyme pathogen. Though the germ can enter your brain a whole lot sooner than that.
Please know that infectious disease doctors (but for a wee handful in this country) and nearly all conventional doctors do not take Lyme seriously. We call them ducks. Quack!
Sounds like you have a duck.
Near the top of this page you'll find "Seeking A Doctor." Click that. Simply ask, in your own thread, for an LLMD and give your location in the thread topic.
Be sure to go to www.ilads.org and on the left menu click "Treatment Guidelines." That brings you to the ILADS Guidelines and below that, Dr. Burrascano's 33 pages of tips for 2005. Print both!
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
That's great that you're on meds.....just make sure you take enough!!!! Some docs tend to "undertreat" and it seems like 100mg might not quite be enough. If your doc is hesitant with you, you might want to find a doc that understands lyme better....check the Finding a Doctor section on this site.
Also, my point of advice to everyone: never rule out coinfections! Those can be babesia, bartonella, or erlichia (not spelled right....just look it up), among others. These are other bugs ticks carry besides just lyme! If your blood tests come back negative for these, but your lyme treatment fails to work, you still shouldn't rule them out., despite negative tests. They can be hard to detect. That is the best advice I can give. Some specialists believe the lyme can't be killed unless the coinfections are under control.
I wasn't getting better, so I finally wised up, and kept retesting my coinfections (i tried to get the blood drawn the days I felt the worst) and eventually, they started coming back positive! Funny how that works!
Anyways, God willing, you won't have as hard of a journey as a lot of people on this site do. For whatever reason, be it genetics or whatever, some people do get over this pretty easily! BUT, I would be on drugs for a minimum of 4 months, to be sure! Better safe than sorry! Best of luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
PS--- make sure your bloodwork for coinfections gets sent to good labs! I use Igenex. Google it...I think they have a website. You have to order the kit, and it gets mailed to you. You can do, for example, the East Coast Babesia package, where they do like 3 different babesia tests with your blood. There are lots of choices.
Once you get the kit in the mail, your doc has to write an order for the blood to be drawn, then when it is drawn, it has to be mailed out like 2 day express, so you can either trust the lab to mail it after they draw the blood, or if you take the kit back home with the blood-filled tubes, UPS will come to your house and pick it up! Just do it on a Monday or Tuesday so it doesn't sit at their lab over the weekend! Give them a call, they'll answer your Q's!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
WELL DAMN lol I guess it is a big deal huh, Im kinda mad most of the people here say what doctor prescribed me- DOXYCYCLINE 100 mg twice a day for 3 weeks- is not enough, I mean if its that common not to cure lyme disease why the hell do doctors still prescribe the wrong dosage?!
I was on my way to a party today,after the first dosage and man I thought I was going to faint in the car I went to the hospital and the doctor was brushing everything off..
I told him of my symptoms and he was just like "eh..doesnt sound like lyme..eh..probbly not from lyme" all he did was look at me.
Now that one of you replied and named the big list of symptoms yes I have experienced those and had no idea they where related to Lyme..
Ive experienced exagerated drunkness off of like two sips of vodka which is usually noo problem!
Ive had a bladder infection and a UTI,PLUS testicular pain and i thought that was from a sex partner I had.
I lost weight but I started gaining it back... Ive been getting blurry in my left eye I thought it was due to contact lenses
And I ve been getting ear aches..
Ive also got chills and fever feeling but I brushed it off, I thought it was from my new job.
I remember the first symptom was back around april 20th, I remember because it was 420 lol.
But anyway,thanks that helps me narrow the symptoms and how long ago this could possibly of been in my system.
So thats right at the 3 month borderline..ooo Lord.. hey im really scared,im trying to laugh to make light of this situation but im real scared bout this. Im only 20 I mean I just turned 20 in april I didnt even get to enjoy life yet I dont want to be disabled u know...
Hey again thanks for the quick replies I didnt think Id get so many so fast, I love you all lol..no really though I do for that thank you. And guys im in the oranges section of NJ, so if you know a special doctor around here let me know please.
Im gonna go to my doctor tomorow and tell her what I found out and tell her to give me better treatment..If you guys got any more input for me with what I just told you or what ever Im all ears,thanks again.
Posts: 8 | From NJ | Registered: Jun 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there "all ears"...
You said...
"Im gonna go to my doctor tomorow and tell her what I found out and tell her to give me better treatment..If you guys got any more input for me with what I just told you or what ever Im all ears,thanks again."
I'll tell you what she is going to tell you.
Stay off the internet.
PS...
I wanted to say to not change your lifestyle and expect it will cure the Lyme. People who eat vegetarian only.... those who drink... those who don't smoke... those who don't exercise... those who take a ton of supplements... or whatever....
They don't get any better or worse than the next person. If they did, we'd all be doing the same and be cured by now.
If you've got it... you've got it. If you get rid of it.. you get rid of it.
If you WANT to make lifestyle changes because YOU want to... and not because someone else thinks you should... then and only then, do it.
Life is too short to make unhappy changes in your life for no good reason.
posted
You absolutely need an LLMD to beat this. How do you
think your dog gave it to you?
Anyway--you need 400 mg/day for at least 2 months, it's thought,
to have any chance of beating early-stage Lyme.
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bettyg
Unregistered
posted
oboy,
also go to activism and please call the JUNE 13th ACTION ALERT .... phone nos. in washington dc on our 2 LYME BILLS been sitting there 10.5 years!!!
we want both put on the senate and houes reps AGENDA for a hearing in near future.
i offered you my newbie package but haven't heard from you. covers info galore above.
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Hey don't overwhelm him... It's hard enough.
Main thing is to to try to kick it with antibiotics (abx) as soon as possible in relationship to the infection. 400mg sounds right to me & I'm not a big fan of abx.
If you don't knock it out of your system early you can become very ill later. So, if you have to cut back on partying now due to taking abx - it may be worth it. It's not a good idea to drink while on abx.
Also- don't go in the sun too much if your taking doxy. It can make your skin photosensitive.
Take it from me... I had this $hit for 10 + years. Try to get rid of it now if you can. Do not wait. This is very serious & the doctors don't know $hit about how to treat it. The media doesn't warn people of the dangers of Lyme.
Later, if you want to know the real deal about Lyme - buy a book called Lab 257 by Michael Carroll.
I live very close to you but I go to a doctor in CT. The doctors in this area don't know anything about how to treat Lyme properly.
People on this message board are very educated & know alot about Lyme. You have to demand proper treatment. It's better to overkill in the beginning rather than have the bacteria linger in your system.
Lyme is very serious.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
oh yes you def need a LLMD if your regular MD isn't prescribing you the right medicine. I would try an make an appointment with one right away. since I had it for 3 years undiagnosed I am considered late stage and need more aggressive treatment. I am on 7500 mg of amoxicillin (yes 14 pills) 400 mg plaquenil 500 mg zithromax and probenecid. You need to be on 400 mg of doxy for early stage-THIS IS VERY IMPORTANT. Regular internists know NOTHING about Lyme-even my MD admitted to me he didn't know much. If it weren't for him I wouldn't be so sick right now. The LLMD I see is in NY but there is also a couple good ones in NJ. Ill pm you with some. This is your health so don't take it lightly. Lyme is one of the most misunderstood infections so it's important to get to a Lyme Literate Doctor
Posts: 370 | From NJ | Registered: Dec 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I agree with Trish4. Try to find a good LLMD (Lyme literate MD). You live close to NYC - you may be able to find one there.
I'm sure someone can recommend some in the area, as well. I don't know any, offhand.
I don't know how much he costs. I've never seen him so I can't recommend him - personally.
Many, many people have used his protocol, though.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I agree that it would be wise for you to try and get in to see a LLMD. From some of the symptoms you have it appears you could also have co-infections.
LLMD's know to test for these and treat based on symptoms if the tests are not positive.
Given the length of time you have been ill your tests have a better chance of showing up positive than some of us long-timers.
If you do go back to your own doc and ask for more meds be sure to take along the treatment guidelines mentioned in other posts and highlight what it says about treating early Lyme.
Good luck, and welcome to Lymenet!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
A Lyme doctor is someone who specializes in Lyme and coinfections. Regular doctors are uneducated when it comes to Lyme treatment. Plus there's a political battle within the medical community regarding the right way to treat Lyme.
The IDSA (infectious disease doctors) just got busted by the CT attorney general for anti-trust violations in their Lyme guidelines and they have to re-write them.
The way you are being treated is the way the guidelines that will be rewritten, say to treat. So, your doctor is doing what he thinks is correct.
A Lyme specialist will also see if you got other infections with that tick bite. Ticks carry more than "just" borrelia and most of us have more than one infection.
So, please see an LLMD soon. Post under seeking doctors for one near you. Mine is north of NYC near Poughkeepsie if you want his number.
Also, get your dog to the vet. Veterinarians know more about Lyme than most doctors.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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The Savely article below does not discuss co-infections, but details much about the current political situation and why treatment - and getting treatment is so hard for patients.
The Attorney General's report (previous link) has not yet been the miracle patients hoped for on a practical level. The IDSA has their spin machines working overtime and most MDs have no clue about what's really happening in TBD (tick-borne disease).
We still hope to see change. ILADS site at www.ilads.org has a great deal of research.
I would not schedule any doctor until you've read this article:
Clinical Advisor Clinical Feature Issue Story From the May 2007 issue of Clinical Advisor (home page: www.clinicaladvisor.com )
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
***** As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
===================================
Before going an appointment, I would also order the book: The Lyme Disease Solution, by Singleton - through Amazon.
-
If you search on Amazon just for "lyme" many books will pop up. You can search inside of some and read all the customer reviews.
welcome to LymeNet...sorry you are here...... I have a daughter 21 who has Lyme/Erlich....she's doing ok...and you will too once you get the right doctor....
I have been on low doses of doxcy....and high doses...I do better right now on low...because my stomach isn't co-operating like I would like it to...... but you just started....so a higher dose would be much better.......
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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daise
Unregistered
posted
Ooboy,
You see, you need an LLMD because you are probably too late for "early stage." You probably need 2 or more antibiotics, taken at the same time and for a longer period of time, beyond even 2 months.
Also, you must be properly assessed for coinfections. These are other lovely tick illnesses that may have been passed to you and that are common in Lymeland.
Got Lyme 10 years ago- given the 2 weeks of abx. Never really got better. Finally ended up at a LLMD and found out that I still had Lyme-- Plus CO-INFECIONS; BABESIA AND BARTONOLLA.
Yes ticks can transmit multiple diseases.
And for many Lyme is a big deal. If you want to get the full story get a copy of Pam Weintraub's new book "Cure Unknown" off Amazon.
It just came out a couple of weeks ago-- and will tell you how complex and political Lyme can be. It's unfortunate but the reality of the disease.
Get informed and you can get better--- maybe not cured.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
To find an LLMD, go to near the top of any page and click "forum home." Then click "Seeking A Doctor." Post a new thread. Post your location in the topic.
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