posted
I went to the ER tonight because yesterday and today I was feeling fatigued/dizzy and I had a fever today. I thought I probably had the flu, so I just slept today. I was about to go back to sleep when my leg started bothering me. Yesterday morning I noticed a painful red bump on the back of my knee. Well, when I looked at it today, it had a ring around the outside. Immediately I start thinking Lyme Disease.
So, I jumped in my car and went to the ER. The DR said I was lucky that I caught it early. He gave me some fluids and started me on antibiotics. I get doxy tomorrow. He gave me a 3 wk prescription. Told me to follow up with family doctor now and then in 4 weeks get a blood test done again.
So, I got home tonight and started researching and found this site. I just wanted to post and maybe get some advice or suggestions about treatment. I will probably be checking in here a lot. This has me a little freaked out.
Posts: 20 | From PA | Registered: Jun 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Do a LOT of reading. If you got 200 mg a day of Doxy, it's NOT enough. Regular docs can be oblivious on how to treat this illness. Also, I assume they cared less or didn't even mention co-infections like Babesia, Bartonella, RMSF, etc??
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
leanne33 I would take antibiotic for at least 3 mths. after all symptoms have passed.
For me personally I would seek a LLMD knowing what I have had to go through, to be sure it is all gone.
The tests are unreliable but most LLMD's have enough experience to say all is ok or not.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Thanks for the advice. That is why I am here. I just looked at the prescription. It is 100mg 2x per day. I have an appt with my dr on Friday and I will see what she says. The nurse I had tonight told me she had it and ended up having to get knee replacement. Talk about scaring your patient!
Posts: 20 | From PA | Registered: Jun 2010
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
You did the right thing by going to the ER and getting some abx. You caught it early so your chances of a full recovery are excellent.
I'm sure you have the highest regards for your family doctor, but most family doctors know very little about lyme disease. If you really want to treat this disease appropriately, you need to see a Lyme Literate Medical Doctor (LLMD). Some family doctors are very limited in their knowledge of this disease. Many of them will deny it even exists in their state. For those who are familiar with it, they usual put you on three weeks of doxy.
For someone who's recently been bitten by a tick 200 mg of doxy a day is really not enough. Your LLMD may want to treat you for up to three months, possibly longer. The only person who can really diagnose this disease accurately is a LLMD. Your best bet is to go to a LLMD asap and let him/her diagnose you and decide what the best course of treatment is for you.
Do not under any circumstance accept that Lyme doesn't exist in your state--it indeed does! Do not under any circumstances allow your doctor to minimize this potentially devastating disease by under treating you and telling you it's "nothing to worry about".
If you get treated by a qualified LLMD at this stage of the game, it most likely will be "nothing to worry about", but you need to be treated by a LLMD, not your family doctor.
Just read this forum and see how many people here are suffering needlessly because their family doctor told them it was nothing to be concerned about.
If you'd like to get a list of websites that provide LLMD referrals, send me a pm and I will be glad to provide you with this information.
Better yet, go to "Seeking a Doctor" here and ask for a LLMD referral in your area. Several people will respond to you with a pm and give you names of doctors.
You've got a great chance of recovering from this disease--IF you see a LLMD and get a proper diagnosis and the appropriate treatment. The sooner you act--the better off you'll be.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's good that the ER recognized the rash. But, they are not complete in their knowledge of lyme. Take some photos of your rash for your file and future doctors.
You do NOT need a repeat blood test for lyme. Ever. The bulls eye rash is the determining sign.
You will need to be assessed for other tick-borne infections, though.
And 3 weeks' treatment is not nearly long enough. And, as mentioned above, the dose is also far too low. Sorry.
You will need an ILADS-educated LLMD as soon as possible. Good luck.
SEEKING A DOCTOR Forum -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This is not at all to scare you, so remember that knowledge is power. This is just the tip of what a patient needs to know. Hopefully, you can get a good ILADS LLMD. I would not count on your family doctor -at all. Most are really not at all educated and go by the IDSA guidelines - which are horrible.
All that is outlined here, the politics and the division between doctors:
* This explains WHY you need an ILADS LLMD or ILADS LL ND (naturopathic doctor) to guide your treatment protocol.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . . 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. . . ."
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:
DVD is $35. and worth every penny. It explains a lot about the politics of lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- These are detailed elsewhere but it will take time to find it. To start, in addition to the abx, these are important.
* PROBIOTICS. Be sure to get some good Probiotics to avoid a systemic yeast/candida infection that is often caused by antibiotics destroying our good-guy bacteria in the gut. Take them at times opposite the abx (antibiotics).
* OLE. Olive Leaf Extract would also be good (do not take at the same time as probiotics. OLE can help prevent candida and also help in other ways.
* GINGER CAPSULES may help reduce the dizziness. Take with food until you see how you do with it. Not too late in the day as it can be a little stimulating for some people.
* MILK THISTLE (for liver support) is necessary for all lyme patients. (See Dr. B's guidelines above).
* MAGNESIUM glycinate or citrate is very good. EPSON SALTS in a warm (not hot) bath, too.
* Avoid alcohol, steroids, artificial sweeteners, sugar, MSG . . . eat healthful foods and rest as best you can. Gentle exercise only (no aerobics). Again, all in Dr. B's guidelines. Stevia (from plants is fine to use if it's pure. SweetLeaf brand or Trader Joe's are good).
Good luck.
================
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.
posted
Dr. Burrascano apparently says 4-6 weeks for early stage Lyme, at 400 mg Doxycycline per day. So 200 mg twice a day.
But he also says not to go off the antibiotics if you are still symptomatic. So if they symptoms go away quickly, 4-6 weeks should be enough, according to some notes someone here took from a talk Dr. B gave.
It's important to not take any mineral supplements or dairy products an hour before to 2-3 hours after your Doxy. The minerals in milk block the antibiotic's absorption.
Good luck! You caught it early which is the best thing you can do. I would try to insist on a higher dose if you can.
Posts: 89 | From U.S. | Registered: Apr 2010
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
leanne, You should be on Abx for a full FOUR weeks beyond ANY signs, symptoms or issues... Minimum. 200mg twice a day is a good starting point for doxycycline dosage for the average weight adult.
But most PCPs will follow the IDSA's recommendation of 100mg b.i.d. (twice a day) which is why you need to seek out a Dr who's experienced in Lyme treatment. Good luck!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
leanne:
1st you probably won't be able to schedule an appt. with a Lyme Literate Medical Doctor within 6 weeks and you should be on doxy (with the correct dose level) for that long. See Dr. B's Advanced Treatment in Lyme Disease referenced above.
So even if your MD is prescribing 3 weeks make sure you can refill fro 3 more and stick to it.
2nd the Infectious Disease Society Guidelines (which are flawed) only recommend 3 weeks of doxy and most Dr's. follow this.
3rd when a Dr. orders a Lyme blood test the Lab's automatically do the Elisa Test (easy and cheap to do) which has a 45+% false negative (note since you have the rash we'll all guarantee you have Lyme, but were not MD's).
When this test is negative then they don't do the Western Blot, a more extensive test but can also high false negatives.
In your case especially for Elisa its too early probably too soon for your body to be producing the anti body to register (band 30). I've read it takes between 2 to 4 weeks.
Take the doxy as it will cover Lyme and Erlicha but I don't believe it covers Babesia and Bart.
Read on Doxy side effects (you'll need pro biotics - replace the good bacteria you'll be killing) and especially avoid the sun for the doxy burn.
Good luck and its better to be safe than sorry. If not treated propertly early this can be turn into a nightmare as most here can attest to.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Thank you so much. I have one more question for now. The bite area is very painful. It was before, but it seems to be getting worse. does anyone know if this is normal?
Posts: 20 | From PA | Registered: Jun 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
leanne33,
you might want to post this question seperately. You will get more responses.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
leanne, I would call your doctor and tell them you lost your meds. (lie) and get a refill asap. That way you can either double up on the dose with the extra pills, or you can last another 3 weeks past your initial three weeks. If it was me, I would try to double up to 400 a day and then try to get to an LLMD asap.
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
I don't believe a tick bite after removal (Did you get it all Out?) should be "very painful" & "getting worse". If the pain doesn't (hadn't) subside(d) by late-morning, I'd seek medical attention. There MAY be something else going on here. Did you wash it well initially? How long since the tick was on ya?
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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