If there is a post about this I've missed, sorry for the message but I'm becoming aware that I may very well be on my own with respect to dealing with Lyme and that the window to act is narrow.
Here are my details
Noticed 'lesion' on leg that looks enough like tick bite photos viewed online that I went to the ER, no longer certain I was suffering from 'dehydration'.
I don't know when I got this 'lesion' I only know I noticed it within the last 3 weeks and did nothing about it.
My symptoms started about 2 weeks and have increased in severity in the last week.
*extreme fatigue - sleeping almost all the time *headache - probably because of how much I sweat *loss of appetite/nausea *muscle pain all over that comes and goes *joint pain in hands especially that comes and goes *stiff neck that comes and goes *loss of balance *one fainting episode out of the house (stayed in since then) *chills *feeling of fever (no thermom & at ER I was 'normal') *sweating *the hardest symptom to nail in words, but I 'feel weird'
A word about the sweating - OMG!!! I'm having flashbacks to wetting the bed!!! I'm so sick of changing my sheets and soaking my clothes, and having my hair stuck to my head! ARGH!!! I realize if I do have lyme, then I have more to worry about than sweating, but this is driving me insane.
I went to the ER and was kept overnight and given fluids. My symptoms decided to 'behave' while there which was really annoying, because the doctors didn't witness the worst and had to just take my word for it.
They did a lyme blood test, but said the results won't be in for 2 weeks. everything else came back normal enough.
The head doc said I either have viral meningitus or Lyme. His stance was I only do lyme treatment if a test comes back positive.
So I was sent home untreated, and now I'm kind of freaking out, because I'd rather take antibiotics for insurance at this point than wait for a test that might be a 'false' false anyway.
further complicating things is the fact I'm a canadian in NYC for the summer and every medical treatment I get has to first be approved by a call to my emergency medical travel insurers who acted like total jerks when I had to go to the hospital. They know I thought I might have Lyme, and they are probably going to demand a positive test to pay for anything more...
Does anyone think I should just get antibiotics now? Is there a consensus about what they cost and how long you do them for if the bite is really new? (I am assuming - because of when I noticed the leg thing). If the cost isn't out of the realm of what my credit can do - I'm a student in a professional program so no much cash flow - then I am tempted to just not wait for the insurer to play ball and go ahead and try and nip this in the bud ...
I'M SCARED so thank you so much for any replies,
Juliet
Posts: 24 | From New York | Registered: Jun 2011
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posted
It sounds like babesia symptoms. You should post looking for a doctor in New york and once you get doctor referrals start calling tomorrow am. You may have both lyme and babs as many do. Good luck I hope you find a doctor soon.
Get a photo of that rash ASAP!!!! Put a ruler next to it for one pic.. include your face in another if possible. Even a newspaper next to the photo is good for proof of date.
Go to Seeking a Doctor here and get some names of LLMD who can help you. Don't waste time with Infectious Disease drs who will tell you it is nothing to worry about.
posted
Those couldn't be closer to describing my recent symptoms better. Yes, that "weird" feeling was the most unusual and pronounced symptom, and certainly one that a clinician is likely to dismiss (they like things they can see, feel or test for).
I had a rash but it was not textbook bulls-eye. The examining PA was doubtful it was Lyme but gave me doxy anyway. Then I came down with facial paralysis and they still aren't taking this seriously.
IMO you need to have antibiotics NOW. My Lyme test came back negative and I was told I could stop or continue the doxycycline at my discretion! What's with that? Of course, I am continuing with them, and even was able to procure an addition two weeks from my daughter's MIL who had a recent script she was told to discontinue. If I can't find a Lyme literate doctor by the end of the week I intend to continue treatment on my own until I do.
I was told by several medical professionals that the negative Lyme titer (ELISA) was about 95% proof that I didn't have it. Well, after carefully looking at dozens of web sites (both pro and anti chronic Lyme) I am astounded to find that most infectious disease experts on Lyme state it can be as low as 25% accurate depending on numerous variables.
I am a pretty logical and intelligent researcher. I tend to look at both sides of a debate as objectively as I can before drawing any conclusions. My feeling at this time is that there is still a high probability of you being infected with borrelia regardless of what the initial test shows, and that you should be treated immediately on suspicion alone, based only upon your presenting symptoms, which seem very Lyme-like.
You may also be co-infected with babesia from some of your symptoms. I had bad sweats, but no different or worse than I might get after breaking any high fever from flu or similar illness. My recent readings seem to describe a more intense and constant drenching sweat with babesia, similar to that described from malaria (a similar parasite). However, babesia is nothing to take lightly since in its acute phase it carries a significant degree of mortality, particularly in immunocompromised individuals. If you feel you may have this pathogen, you should get very proactive immediately.
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
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posted
BTW there are many pharmacies who charge very little for generic drugs like doxycycline. Even though I have a small $5 co-pay for generic drugs, when my wife went in to pick up the 21 days of doxy, she found that it was free to us.
Wal-Mart pharmacies have very cheap prices on doxy, and they are all over the place. 20 100mg capsules are only $4, and 60 caps are only $10. Anyone can afford that. The trick is in getting the script.
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
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posted
Lymetoo, I am beginning to realize that if they just gave me 200mg (40 cents worth) of doxycycline two years ago when I had a confirmed deer tick bite, I might not have suffered any of the things I've had to endure for the last two years.
Regardless of which side of the line anyone falls on the chronic Lyme debate, failure to treat a tick bite prophylactically is the most mind-numbing bit of medical oversight I have ever seen. With hundreds of thousands of scripts being written each year for macrolides and penicillin-type drugs for ailments for which they are ill-suited, you'd think that a single prophylactic treatment for tick bite right there in the ER or doctor's office would be a no brainer.
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
Please read this thread on Babesia symptoms. Your symptoms point to a raging Babesia infection. Sometimes standard Labcorp testing can find Babesia. With your symptoms, I think it's worth a shot. Then you could get antimalarials.
Good luck. Fight for treatment. Or get it somehow...
quote:Originally posted by Fogged: Lymetoo, I am beginning to realize that if they just gave me 200mg (40 cents worth) of doxycycline two years ago when I had a confirmed deer tick bite, I might not have suffered any of the things I've had to endure for the last two years.
- Indeed... you and many many thousands more.
Recommended dosage for a new bite is 200mg of doxy twice a day. I would want at least 6 wks worth.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Oops... Again, I've been looking at and recalling the IDSA guidelines, not the proper ones.
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Your test may come back negative. that doesnt mean you dont have lyme
Posts: 3905 | From USA | Registered: May 2007
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Juliet, please do whatever it takes to get the doxycycline right now. Others have given you Babesia information (an infection you can get in addition to Lyme from a tick bite) as your symptoms may indicate such, and you will need additional treatment medications for that as well.
Go around your insurance and get to an LLMD asap - perhaps your family can help you out while you are here?
Your window of time to nip this in the bud is very very short - the dollars out of pocket now is cheaper than a lifetime of illness.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
thank you all very much for your feedback and support!
I am quite devastated to discover how Lyme patients are treated by the medical establishment....
I was given a referral here on this site, but when I called this am, the person in question's office told me he is booked up until August. The office did confirm that the emergency room was totally wrong not to give me antibiotics and told me to call the ER back and ask for them...
So I called the ER and ----WOW --- I am shaking with rage right now. I was totally dismissed outright and treated like an idiot and a trouble maker. They did tell me that the only test they used was ELISA and that because that came up negative they didn't use western blot. When I tried talking about Co-infections I was not taken seriously and the phone call took an uncomfortable hostile turn.
All I want are some freaking anti-biotics!
I have a groupon for an urgent care private practise place - I'm thinking of going in there and telling them either that I called the ER back and they said to get a prescription, or to say nothing at all about even going to the ER and just saying 'I got bit by a tick - give me drugs'.
It blows my mind that health care providers could be so damn ignorant. And I can't believe I was spoken to like a mentally deficient person because I chose to challenge their methodology.
The Dr. I spoke to said "Your doctor didn't think your symptoms fit the Lyme profile". Like his opinion mattered when he didn't even get the list of my symptoms right on my discharge papers??? I AM SO MAD.
Sorry for the rant - thank god for this group!
Posts: 24 | From New York | Registered: Jun 2011
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posted
YES that feels right!!! I just ordered fish antibiotics from amazon...I can't even believe as human beings we are reduced to this. Posts: 24 | From New York | Registered: Jun 2011
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posted
I would go to the nearest urgent care if you have one and telll then you were bitten by a tick. Tell them you had a clear "bulls eye" rash and are very sick.
Most urgent care facilities are able to prescribe the appropriate antibiotics. This will at least help you until you can find a lyme doctor.
Posts: 131 | From Maryland/USA | Registered: May 2011
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Wow, your story sounds a lot like mine! My doctor's office was completely dismissive of my symptoms and kept trying to give me antidepressants (despite my hugely swollen ankles, which isn't a common symptom of depression that I'm aware of). They wouldn't prescribe me antibiotics but they would prescribe me several months worth of lorazepam (a highly addictive benzodiazapene drug used for treating anxiety)!
Un-fricking-believable! I was almost reduced to buying veterinary antibiotics myself, but I managed to convince the third ER that I went to to treat me (and a nurse who knew a little something about lyme and managed to get me a prescription for Flagyl for "bacterial vaginosis" LOL!). I had to drag my fiance and 3 kids (9mos - 9 yrs) into the ER to wait with me until 3 am, but I'm glad I did it!
Definitely DO NOT WAIT, that's for sure. I am not entirely clear on whether or not lyme can be "cured", but I have read enough to know that if it goes untreated or improperly treated for long enough that your chances of developing chronic health problems are greatly increased. Don't take the chance!
Make sure you find the guidelines for early treatment from ILADS. I want to say that 200-400mg of doxycycline for 8 weeks should cover you pretty well. And then there's the detox! Epsom salt and peroxide baths have helped me enormously. Milk thistle is a supplement that will help your liver and a magnesium supplement is probably a good idea, too because low levels of magnesium tend to exacerbate the pain. I take a B complex for energy and it seems to be doing the trick.
Good luck! Definitely get an appointment with an LLMD as soon as possible. I've been living this nightmare for over two months now, undiagnosed because I tested negative on the ELISA, and couldn't find a doctor to see me until mid-Augst as well. Just do what you have to do until then. Become your own health advocate by reading as much as humanly possible on this illness.
These folks here at Lymenet know the drill. They are probably the best source of info that I have come across.
I can't believe your doctor sent you away without treatment for "either viral meningitis or lyme"? Especially with the EM rash at presentation which is supposed to warrant immediate antibiotic therapy WITHOUT serological testing! How stupid are these doctors, for crap's sake?!
Posts: 156 | From Virginia | Registered: May 2011
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posted
Thanks so much for the wise counsel everyone! I'm feeling victorious with my little baggie of doxy in my hands!!!
I love Groupon even more now - One magically appeared for an Urgent care in New York on Sunday and I bought it. SO GLAD I WENT.
I was totally gun shy so never even considered telling the truth. I was all 'found a tick, pulled it out, end of story'. I only got a 14 day course ( said my canadian doc told me to ask for 6 weeks...probably aroused suspicions? plus I was paranoid about admitting I had symptoms - I actually thought he wouldn't give me them if I did!) I'm happy though. I know I'll need to follow up with a LLMD, and I think it will be tricky to find one in Canada, but I'll try.
Because I ordered the fish doxy, I decided to do a little research, and the unofficial word seems to be that it is the EXACT same thing as what we humans get charged exorbitant amounts for! I'm glad I'll have both to compare side by side. Apparently you can use the number on the pill to track where it came from and that confirm if one doxy is like another.
Thank you for all the affirmations to keep pushing, and for the helpful tips about complementary stuff to take at the same time. Good thing I have a health food store next door.
"bacterial vaginosis" - my goodness anomymis!!! LOL indeed - but, it is really blowing my mind what everyone has been through with the medical world. I'm so glad that nurse was there when you came in and was willing to do the right thing! Good for you for persevering.
I'm trying to figure out what to do with this experience once (fingers crossed), I'm in the clear. I wish I could write a TV series or something to chronicle someone living with Lyme to help bring attention to it. Something like you might see on Showtime...
thanks again to all of you - you've been life savers
Juliet
Posts: 24 | From New York | Registered: Jun 2011
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I would want 200mg of doxy twice a day for 6-8 wks myself.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
I was early stage like you, Juliet. I was put on the 200 mg of Doxy twice a day, making it 400mg total. Be sure you take plenty of probiotics along with it so you won't get yeast. Try to avoid sugar. You are going to make it. You sound just like I did one year ago when I first got sick and found out the hushed truth about Lyme Disease.
We'll be here for you.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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