posted
So, I first noticed the bullseye rash on Wednesday, July 15, went to the doctor (well, really an Urgent Care nurse practitioner), and she prescribed two weeks of doxycyclene, which I just finished yesterday. I assume my bloodtest for Lyme Disease came back negative since I haven't heard back from them, but I also understand that false negatives are common.
I heard from a friend that two weeks of antibiotics is not nearly long enough and that I should see a Lyme specialist. Well, I have neither time nor money for a specialist...but my dad is a doc and can prescribe me more antibiotics if I ask him to. Should I do it for another two weeks? Three? I'm concerned about being on antibiotics so long. First of all, I find it very difficult to take the pill on an empty stomach (one hour before eating or two hours after...I rarely go that long without eating something, and it makes me nauseated! Also I've had to pretty much give up dairy products since I hear the calcium can bind with the drug making it less effective...but I've been drinking milk in my coffee in the mornings one hour after taking the pill...no idea if this had an effect on the pill's effectiveness). Also I just think it's generally unhealthy to be on antibiotics so long...can increase the risk of breast cancer, messes with your body's "normal" bacteria, makes my birth control pills less effective, bad for public health reasons (can help lead to antibiotic-resistant bugs), etc.
But if the risk of later complications of Lyme outweigh the risks and headache of more antibiotics, then I guess I'll get more antibiotics. Should I start another course today?
Help? Thanks!
Ashley
Posts: 6 | From Washington, DC | Registered: Jul 2009
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posted
Yes! Please see the treatment guidelines at www.ilads.org. Be sure your dose is high enough .... most common is 200 mg twice daily.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
What was the dosage of Doxy?
If you are on the antibiotics for 4 weeks to make sure you get rid of the infection, you don't really have to worry about the fears you list from long-term antibiotics. It's a couple more weeks of using a second form of birth control, you can take probiotics for the gut, and you can actually still have dairy spaced away from the antibiotic.
Antibiotics don't necessarily increase the risk of breast cancer. There was a study finding a correlation between high antibiotic use and breast cancer, but it could very well be that the cancer is related to the underlying reason the person took lots of antibiotics.
There are some scientists who think some cancers are a result of infections. They are also learning more about illnesses related to the body not detoxifying properly. If your body has the genetic predisposition to certain cancers it is related often to detoxification. The inability to detoxify can weaken the immune system resulting in other illnesses needing antibiotics. So don't worry about cancer from needing a few more weeks of antibiotics.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
You said you neither have the time or the "money" for a specialist, but your dad is a doctor??? Sorry but that just made me chuckle.
I would definetly without question take a few more weeks of antibiotics. Unless of course you want to end up like many of us here and have to spend years getting better. It is much better to be safe than sorry.
And the fact that you have easy access to antibiotics......no reason for you not to make sure you kill all those nasty little spirochetes.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Thanks for your reply! Yes, maybe I'll go for more antibiotics.
p.s. - I'm an adult and live paycheck to paycheck. Please don't assume that just because my dad is a doc, that I have money.
Posts: 6 | From Washington, DC | Registered: Jul 2009
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I'm not sure what my dosage was...I assume 200mg twice daily was it, but I'll double check on the pill bottle.
Appreciate all the replies! You guys are awesome!
Posts: 6 | From Washington, DC | Registered: Jul 2009
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bettyg
Unregistered
posted
welcome ashley
please break up your long paragraph into many SHORT paragraphs and DOUBLE SPACE between each paragraph for us severely NEURO LYme folks who can't comprehend or read what you wrote ...
here's my welcome letter with links of dosages/meds for adults/kids and complete dr. burrascano' lyme guidelines.
GET ON MORE ABX NOW!!! YOU WANT TO BE CURED AND CAN BE *************************************************
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ----------------------------------------------------
I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I would definitely suggest that you treat for at least another 4 weeks, more if you have symptoms.
Really this is not a dangerously long course of antibiotics and any small risk or discomfort is pigfeed compared to the horrors that could come your way if you undertreat.
If you are not already doing so, you could take a good probiotic away from the abx [eg at bedtime].
Posts: 1647 | From UK | Registered: Nov 2008
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posted
It's too low of a dose for Lyme Disease. I only weighed 123 pounds when I took doxy and I took 200 mg twice daily. Now is not the time to be conservative with meds as you are trying to prevent a very serious illness.
If you must, show your dad the guidelines, which say min. of 300 .... and many with Lyme get very thin, like 80-90 pounds, so take that into consideration when looking at the 300 dose.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
OK, fine. 400mg per day it is!
Posts: 6 | From Washington, DC | Registered: Jul 2009
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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
By drinking milk one hour after your Doxycycline pill, you were lowering you dose which was already too low. So you've spent the crucial first weeks not on a strong enough dose to kill lyme.
Have you noticed an increase of symptoms or a spreading of symptoms?
Maybe i shouldn't be saying this prematurely, but i have a neighbor who had an embedded deer tick with surrounding rash. His son, who is a doctor, put him immediately on 500 mg Doxycycline 2x/day for 2 weeks, and he was cured. That was a year ago. (UNCONFIRMED, UNVERIFIED, NOT FACT-CHECKED.)
(This fellow SAYS that was the dose. I've asked him to show me the dose in writing so i can tell people. He's going to have me to dinner with his doctor daughter-in-law so i can confirm this, before telling everyone.)
You can take calcium 2 hours before or after your pill; that's the standard rule for some other antibiotics too.
About NAUSEA---- are you taking CAPSULES or TABLETS? My LLMD said it's especially the capsules that cause nausea. You should switch to tablets. Yes, it is hard to get through that half-hour of queasiness. If you really can't get through it, eat a cracker or two, hopefully that would be sufficient.
Be sure to take high-quality acidophilus pills, and milk thistle to protect your liver. Also, one thing that helped me is--- i found that i had to take B-50 pills while on antibioitcs, otherwise my liver couldn't do enough of its work.
One more thing, a RASH---- after a couple of weeks of Doxy at 200mg, 2x/day, i got a spreading rash on the neck area. A PA diagnosed an allergy to Doxy. That was wrong. My LLMD told me it was probably lyme die-off in the skin. When his lyme patients get rashes from Doxy, he sends them to the dermatologist, who sends them back, saying no one gets allergies to Doxy.
GGOOd luck, ---Polly Polygonum
Posts: 1226 | From USA | Registered: May 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I agree about the dosage. I got pretty ill when I got Lyme. If any parent is aware or could see what it does to people, they shouldn't hesitate to Rx the right thing! It's like issuing a life in hell sentance.
Just because he's a doc sure doesn't mean he understands tick-borne infections. Most don't.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Also good to note: If they tested you at the time of the bite, they wasted your money. Antibodies don't usually develop until around 6 weeks later.
I forget what the time frame is to test for Babesia, I think around 3-4 weeks but I'm not positive. I think that you would likely have some serious symptoms if you had co-infections though, based on my personal experience.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
ash,
in my humble opinion, i would SERIOUSLY recommend seeing a lyme literate doctor in your area. if you still have the rash, take a photo!
2 weeks of doxy is not enough to eradicate lyme and coinfections.
you may have coinfections, which are organisms that travel with the lyme bacteria. lyme and co's are very serious and if not treated properly, can leave you with illness for the rest of your life!
Doxy should not be taken with dairy, and NEVER lie down within a half hour. this can do extreme damage to your intestinal lining. important to read the product info.
Positively avoid sun as you can get a serious sunburn within minutes without turning red.
its easier on the stomach if you take doxy with food or near a meal. its very harsh on the stomach. it usually states this in the info.
a high culture / high strain probiotic is REFRIGERATED is absolutely necessary while on abx . Be sure to take 2-3 times a day by itself, at bedtime and 2-3 hours AWAY from the probiotics or the live cultures will be killed.
some good brands are Renew Life Ultimate Flora CRITICAL CARE, Megaflora by Megafoods, and NSI 15-35. You can get these or similar products in your local healthfood store.
remember high culture (like 20 billion) and high strain, (at least 10 strains)
Replenish often as your gut flora is being destroyed by the abx.
i just want to say i was on antibiotics for almost 9 months and the devastation lyme can bestow is FAR greater than being on antibiotics for a while.
treatment rule of thumb is that you should continue abx for 3 months after totally symptom free.
good luck and keep us posted Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Be sure to take doxy with a full meal, so that you do not get the nausea that taking it on an empty stomach can cause.
It still works with food.
Posts: 2557 | From home | Registered: Aug 2006
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I'd just like to add that it is no good reasoning that as you have no symptoms other than a rash, you don't need as long on abx:
Lyme disease does not work like that, at least, not necessarily!
Symptoms can start insidiously quite a while after the bite, so you may think at first that you're a bit tired, or have a bit of an ache, or a virus etc.
Some people's immune systems fight off the worst of it for years, as mine did and it could be a long time before you realise that something is seriously wrong and getting worse.
4 weeks of abx [some at too low a dose and lowered further by being taken too close to dairy too is, in my opinion, taking a big risk....an unnecessary one since you have your dad to help.
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
2 weeks of Doxi at 200mg a day is NOT enough- if you dont listen to what these people have told you YOU Will live the Rest of your life in Hell-
The dose of Doxi you took is called the Standard Dose --it will kill most Bactria Not Lyme --
If you dont treat this Immediately -- in 6 months you will wish you had and by then you will be chronic and will be on this site asking for HELP -
I have spent over $100,000 getting my health back-- You think you are broke now just wait- --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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