Last week Tuesday I was diagnosed with late stage lyme disease. Right now they are prescribing me with 100mg doxy twice a day for 6 weeks. After reading some posts I am unsure if I should try to find a specialist right away or just wait until my next appointment which is scheduled for two months from now. Please help me! I am so new to this and very stressed because I am very uninformed on the disease. When my tests came back they showed 6 bands of antibodies which the doctor said it is the most he has ever seen. Should I worried about this? Does it mean that I have had it for a very long time? Any information that anyone could give me would be so helpful! I am feeling very in the dark about everything right now!
Thanks,
KW
Posted by dmc (Member # 5102) on :
Find a LLMD. Contact a local Lyme support group (that page is on left side under the "flash Discussion".
If there isn't any group try posting a request for LLMD names in "seeking a Doctor" page here.
Do take probiotics to replce the "good bacteria" in your digestive tract. You take those couple hrs away from the antibiotics.
It is a simple read to learn about lyme & other tick borne diseases
good luck on your journey to health.
Posted by Keebler (Member # 12673) on :
- Sorry. But glad you are on track for a better future.
dmc is correct, you really need to find a specialist, an ILADS-educated LLMD and nothing less. As soon as you can.
Expect your regular doctor to not understand why you seek an expert and do not accept a referral to an ID (Infectious Disease specialist as they are clueless about lyme, usually. You might find out from their office if they are members of ILADS. If not, just say know.
You also need to be assessed for other tick-borne infections. Again, an ILADS-educated lyme literate doctor. Not all practice the same way, exactly, but if they are ILADS "educated" (read the research, attended some seminars, etc.) they will have had exposure to the science behind lyme and other TBD.
======================
* This explains WHY you need an ILADS LLMD or ILADS LL ND (naturopathic doctor) to guide your treatment protocol.
- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)
You can read more about it here and see customer reviews.
Web site: www.lymedoctor.com -
Posted by Dekrator48 (Member # 18239) on :
Doxy in that low dose for 6 weeks will not do very much for you.
You may feel a little better for awhile, but you must find a LLMD fast.
99% of Dr's say that chronic lyme doesn't exist, so when you finish your 6 weeks of doxy, your Dr will likely tell you that you are cured even when your symptoms persist.
Start reading as much as you can from ILADS about lyme and coinfections.
You need a good eval by a LLMD. Many people with lyme also have babesia, bartonella, ehrlichia and other infections.
Read this paper and become familiar with it...these are the guidelines ILADS LLMD's follow...
Good luck....it's a good thing you found this site!
Posted by METALLlC BLUE (Member # 6628) on :
Contact me for a list of physicians in your local area. [email protected]
Let me know which states you're willing to travel to as well.
You should be very concerned. To get yourself educated, purchase Cure Unknown. Understanding the medicine, politics, and various options will help.
I'm giving you some brief information so you do not feel overwhelmed. We'll discuss co-infections, controversy, and other details as you go.
Posted by TerryK (Member # 8552) on :
Lymekw, You've gotten some very good advice.
Lymekw wrote: When my tests came back they showed 6 bands of antibodies which the doctor said it is the most he has ever seen.
That is a good sign. It means that your immune system is fighting.
Terry
Posted by lymekw (Member # 25262) on :
Hi! Thank you all for your advice. I have called the nearest LLMD, but he is booked out until July so I am going to have to wait until then to see him. Any suggestions on things I can do before my appointment?
Thanks,
KW
Posted by kidsgotlyme (Member # 23691) on :
KW,
I would ask the doctor who prescribed you the doxy to at the very least go ahead and let you take that up until your appt. with the LLMD.
I only say this because my daughter was doing ok for someone with lyme before our family practice MD put her on doxy for three weeks.
After she came off of it in Feb. she has been steadily declining. She just saw the LLMD for the first time last week.
I just keep thinking that if I had not let her take the doxy until we saw the LLMD then she wouldn't be so bad right now.
Who knows though?? It might have happened anyway.
Also, most doctors have cancellations, so if you are able to go anytime, make sure they either put you on their waiting list, or call once or twice a week to check for any openings they might have.