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!
It is a simple read to learn about lyme & other tick borne diseases
good luck on your journey to health.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
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!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
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?
kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
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.
Blessings to you................Christie
-------------------- 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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