This is topic Doctor after 30 days in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/84149

---

Posted by jsturner (Member # 20874) on :
 
I tested cdc positive for lyme 35 days ago.

I was treated for 30 days Doxy 100x2 day. I

just went to my doctor today. I told the doc I

have been very sick, chills, fatigue, joint

pain. He looked at me with a confused look and

said "maybe you had a touch of the flu." Ok now

this doc obviously doesn't know anything about

lyme and frankly he scared the heck out of me

because of his lack of knowledge. I was told to

come back in one year for my regular physical. I

don't know if the 30 days of doxy was enough or

not. How does one know? Is it when you are

completely symptom free? I'm a little scared.
 

---

Posted by Nicole_Denise (Member # 20620) on :
 
Hi jsturner,

The bad news: 30 days of Doxy is NOT enough, especially at that dosage.

The good news: You are catching this very early on, so it will be much easier to get rid of.

You need to see a lyme-literate doctor (LLMD). They know how to treat Lyme, and will give you antibiotics for a much longer period.

With treatment, you can be completely symptom free.

If you post on the "seeking a doctor" forum, someone should be able to give you the contact info for LLMD's in your area.

Feel free to post here with any of your worries and concerns.
 

---

Posted by TerryK (Member # 8552) on :
 
As Nicole said, standard IDSA (Infectious Disease Society of America) treatment is not long enough or strong enough to deal with lyme disease. Most doctors who are not members of ILADS (International Lyme and Associated Diseases Society) use the IDSA guidelines.

I'm not sure if you know this or not but there are battles going on regarding the treatment of lyme disease. Many who end up at lymenet with chronic lyme disease are the result of the IDSA guidelines.

The Attorney General of Conneticut found that the IDSA guideline authors had conflicts of interest and thus the IDSA has convened a new panel to review the guidelines.

One can also get what we call co-infections from the tick that passes lyme. Some of these infections require an entirely different treatment than lyme disease. It is not unusual to have a co-infection and if you do, it is much more difficult to get rid of lyme.

Your best course of action in my non professional opinion is to seek out and ILADS LLMD. Most have extensive training in TBI's (Tick Borne Illnesses) and can give you proper testing and clinical evaluation for lyme disease and co-infections. Testing for most of these pathogens is poor at best.

You can go to the seeking doctor section of lymenet and put your location in the subject line and ask for help in getting a list of doctors that are close to you.
http://flash.lymenet.org/scripts/ultimatebb.cgi/forum/2?

ILADS is a group of physicians who specialize in treating chronic lyme disease. You will often hear them referred to as LLMD's (Lyme Literate Medical Doctors)
http://www.ilads.org/

You can go here and register and get a list of ILADS doctors that are closest to you.
http://tinyurl.com/6na364

You can also check for your local lyme group here.
http://www.lymenet.org/SupportGroups/

A great book that you can read that helps to understand the situation with lyme disease is "Cure Unknown". Written by a Science Journalist who is senior editor for Discover Magazine. She and her whole family faced lyme disease. The book covers a lot, history, science and her personal story and a few others personal stories.

Sorry you have lyme disease but as Nicole said, you are in a good position to take care of it now.

I would steer clear of any doctor who is a member of the IDSA unless they are also a member of ILADS.

Terry
 

---

Posted by gemofnj (Member # 15551) on :
 
j,

i totally agree with Terry and Nicole. he obviously is not a doctor that follows ILADS guidelines.

you need to find a really good lyme literate doctor in your area.

testing for coinfections is very important too.

also for a better understanding of lyme and coinfections, you need to read this document thoroughly. you might want to print for future reference.

this is an excellent source of what type of protocol a REAL lyme literate doctor would follow:

http://www.lymediseaseresource.com/BurrGuide2008.pdf

good luck and keep us posted

http://www.lymediseaseresource.com/BurrGuide2008.pdf
 

---

Posted by Leelee (Member # 19112) on :
 
You were given excellent advice by the posters before me. Definitely see an LLMD and get tested for co-infections. You also need more abx.
 

---

Posted by bettyg (Member # 6147) on :
 
get MORE ANTIBIOTICS NOW; you have to wait up to several months to get into llmds !!!

i just looked up for someone else; 2 maine llmds...

POST IN SEEKING DR. forum

MAINE LLMD NEEDED

copy your above post there and paste it

go to lower left hand corner and mark box to receive all replies;

night all
 

---

Posted by LindaS (Member # 20251) on :
 
J.,
I'm only into this a few months ahead of you. Get your doxi. refilled and be sure to take plenty high quality probiotics. (Many drs. neglect to tell patients that.)

It will take some time to get in to see a lyme literate Dr. once you find one. As mentioned above go to Dr. Referral for names., then the testing takes a few weeks.

Meanwhile, build yourself up. Take high quality multi-vitamins, eat well, sleep as much as you can, don't drink alchohol. Read Dr. Burrascano's Guidelines noted in the post above.

You mentioned feeling very ill while you were taking the Doxi. That is called Herxing...the organisms die and the particles of dead organisms release neurotoxins that reactivate the immune system to attack. You need to help your body flush the neurotoxins out. My dr. recommends staying hydrated and an herbal supplement called "chlorella" to help with that. Check at a vitamin or health food store.
 

---

Posted by jsturner (Member # 20874) on :
 
Thank you all for the advice. I don't think my doc

will refill the doxi. It's just so

stressful to have a dr. that you have trusted for

so long be so uninformed on this subject. I have

found an LLMD in NH that is accepting patients and

insurance. I will call him on Monday.
 

---

Posted by jennie46 (Member # 20953) on :
 

quote:

---

Originally posted by jsturner:
Thank you all for the advice. I don't think my doc

will refill the doxi. It's just so

stressful to have a dr. that you have trusted for

so long be so uninformed on this subject. I have

found an LLMD in NH that is accepting patients and

insurance. I will call him on Monday.

---