My wife had a tick bite approximately 11 weeks ago. We monitored her closely and she showed NONE of the early signs (no rash, no flu-like symptoms, etc). We then threw the tick away and thought we were ok.
A couple of weeks ago now, she has started showing some of the later symptoms, joint pain, neck stiffness, tingling in hands/feet, jaw pain, leg twitching at night, among others. We went back to the local doc and had a lyme titer done and it came back negative (we haven't seen the actual results). We're still not convinced because we know the chances for false negatives.
I contacted famous Dr. C in Springfield, MO and made an appointment, but he didn't have an opening for another whole month. We also got put on the cancellation list so hopefully we should get a call before then.
I know that the earlier the treatment starts, the better, but does anyone think that another 4 weeks at this point will make or break the chance of success?
My wife really wants to be treated with antibiotics NOW, but to do that we would have to go through her local doctor and I don't trust that he would put her on anything strong enough or long enough. Plus going on antibiotics now, will mess up any western blot tests we will get done.
I guess I'm just looking for advise to see if we should just sit tight and wait for the Dr. C appointment or really push for immediate antibiotic treatments.
Thanks much everyone.
Posted by Geneal (Member # 10375) on :
I was dx. with Lyme due to one positive band on Western Blot (band 23), by local doctor.
Have been on doxy. 100 mg x2 daily for about 30 days of a 45 day prescribed period.
Have felt marginally better on some days, but feel the current dose of doxy is just masking symptoms, as I still get new ones.
Could not get appt. with LLMD until end of this month. (Am counting days).
Most info. I have gotten from this site and from info mailed by LLMD is that the doxy dose is not high enough to be truly effective.
I've been waiting for over 30 days to see LLMD, so know your pain and frustration.
Hang in there. Wish I could give more info., but new at this and trying to get to LLMD as soon as possible.
Sincerely, Geneal
Posted by Michelle M (Member # 7200) on :
So sorry to hear of your wife's dilemna! I do think that days/weeks count in your situation.
I would return to the PCP and ask for treatment. They'll try to give you a low dose of Doxycycline. I would take the ILADS treatment guidelines in (see Newbie Links above) and ask to be treated with at least 200 mg. TWICE a day, for a total of 400 mg. a day. Less is not typically enough.
They might refuse, but at least go in armed with information and give it your best shot.
Another thing you might do: call up IGeneX (see their website by same name). Ask for western blot testing kit, tests 188 and 189. They'll be mailed to you. Have your PCP initial them, and get wife's blood tested by western blot. Your LLMD will do that anyway. The sooner the better.
Since it's early in her infection I would NOT forego treatment to try and get positive test results. In all likelihood she'll have positive specific bands anyway, even if she gets on doxycycline.
I'm not a doctor, of course. I'm not sure even what your LLMD would advise. That's just what I'd do! Hopefully others will chime in too. Best of luck - with early treatment, your wife will beat this and feel better soon - so glad you're seeing a great LLMD!
Michelle
Posted by quic (Member # 5262) on :
You have a tough decision to make. My feelings about it are that every day or maybe even every hour sooner that your wife can get (the correct) treatment will be to her benefit and does certainly make a difference in recovery time. Here's my story.
My entire family of 4 was infected in the winter of 2004 from ticks on our Christmas tree (didn't know it at the time). My wife became ill on Jan. 4. She was so ill she was paralyzed from the neck down for two days. My daughter and I came down with symptoms in mid Feb. and my son in mid March.
Due to a bizarre set of circumstances and test results and no-brained doctors leading us around, our treatment all started at different times.
My daughter, son and myself started treatment in the beginning of April, and my wife in May (of 2004).
So my wife went for almost 5 months from the time symptoms started to treatment. My daughter and I went for about 1.5 months and my son went untreated for about 2-3 weeks (after onset of symptoms).
Recover time: Son - 1.5 years Daughter - 2.5 years Me - 2.5 years Wife - still not recovered.
I know its not as plain and simple as that. Each of us had unique coinfections and such and different meds...my wife did 6 months of IV. But you can definitely see the trend. The longer without treatment, the longer the recovery. I genuinely feel that if my primary doctor would have listened to me and medicated me in mid-March when I started to figure out what the h*ll was going on, my recovery would have been much quicker.
I would do whatever I could to get treatment for your wife. Maybe you have a friend who is a doctor or dentist. I would even order abx online if I could. Thats how strongly I feel about it. I had barely touched a pill before April '04. Almost never went to a doctor. Since then, I've taken thousands of pills and been to more doctors appts then I would have ever imagined to try and get rid of this miserable disease. You have a good amount of information available for dosing, and doxy seems to be the drug to use until you can get a full diagnostic picture of your wifes illness and get her on the right meds.
You are right about the abx possibly interfering with tests. The suggestion about getting your primary doc to sign off for the tests was a very good one. That way she can get on abx right afterwards.
...just my opinion. Good Luck
- Mike
Posted by bettyg (Member # 6147) on :
Welcome Jack! Great detailed post about what happened to your wife, etc. Glad she has YOUR SUPPORT thru this all; she's going to continue to need it 24/7 going thru this long journey.
NOT A MD! Get PCP to give her doxy now. Get IGENEX testing done. Stick w/Dr. C; hopefully, they might have an opening sooner. Complete his long Q/A with as much detail as possible for him to use later.
Hmm, another xmas tree incident; same with me from 36 years ago!
Jack, I'm going to send you my 19 pages of newbie links/advise which gives more IGENEX info on testing, LONG symptom list, SSDI..disabilty insurance procedure, links, and how to use this board, etc.
Just skim it for now, but read the DETAILED 10 step for 1st LLMD appt.
I've printed links for BURRASCANO'S 33 page guidelines for you to print, and Treepatrol's link of around 1000 links in his archive of quality info! Glad you found us; it's 24/7 education/SUPPORT as you go the lyme journey! Posted by chunga (Member # 3775) on :
This one definately needs a disclaimer...unless there is an allergy or contraindication...I would look to see if I could buy the Doxy online without a prescription.
I would have it shipped overnight, then carefully read and follow the instructions and immediately begin taking the meds.
Except for the dosage.
Small doses are used for things like acne.
If bitten by a tick, then exhibit the symptoms described, it's reasonable to acknowledge the possibility of Lyme.
What's the worst thing that could happen if you take a bunch of Doxy for a while, even if there is no BB present?
There a few negatives I'm sure (sun-sensitivity, etc.) but if it kills the bacteria that would be really great, and in my opinion the risk would meet the end in spades.
Tests are fun but are often inaccurate.
My goal would not be to succesfully obtain a positive DX, but to prevent the organisms from proliferating and in doing so, becoming more difficult to eradicate.
Best wishes, Dave
(The sentences above are not meant as advice, are possibly illegal, and undoubtedly there will no shortage of real doctors eager to dismiss the notion as pure folly.)
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