posted
last month, i had a rash, went to lyme dr and he put me on doxy 100mg/1 in the morning and 1 in the evening. didn't take blood. was waiting for 6 weeks on doxy, then he was going to take blood.
i also saw my pcp the same time i saw this lyme dr. she ordered a western blot & cd57 on me. i found out i have chronic lyme and a new infection. i am taking more bloodwork this week and my pcp said she will send it to igenix.
today, i sent my lab results to my lyme dr, spoke to nurse & shen said they don't send to bloodwork to igenix, they send to another lab. i thought i had to send my labs to igenix for an accurate results for co infections and anything related to lymes.
my pcp told me based on my results i should increase my doxy. She changed it to monodoxy, i guess that is fine and said take 2 in the morning (100 mg) and one at night. I was hoping to take 500mg total.
i have been trying to figure out who to seek treatment with. I guess neither are looking too good right now.
I know there are benefits of sending my labs to igenix, but i don't have a ton of $$. my pcp dr seemed so on the ball, so i thought, but i thought she was a little light on the doxy.
because i have probably totally cofused everyone, here are my two simple questions:
1)is it best to send my labs to igenix if $$ is tight. is there another decent but less expensive lab?
2)shouldn't i be on at least 400mgs of doxy, since i now found out ihave chronic lyme and a new infection. maybe the dr is waiting to see what igenix says but why wait, right?
so confused. i just want to feel comfortable with one dr and move forward.
thanks.
in the
Posts: 23 | From NJ | Registered: Jan 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Find out from the lyme doctor which lab they use since they don't use Igenex.
If it is Quest or Labcorp, they are junk. But, they may name an acceptable lab to you.
Your pcp sounds pretty good ordering a Western Blot from Igenex and a CD57. That's what a lyme doctor would do, but would also order coinfection tests from Igenex. Is that what the further bloodwork that your pcp is doing this week is for? coinfection testing? I hope so.
Increasing the doxy was another good move. Burrascano says to take 200 mg twice per day with food. See page 18 of his Guidelines (link below).
Have you read and studied the Burrascano Guidelines found here:
You really need to study this document to learn about the disease you have and what good lyme treatment looks like. As you probably already know, you can't just assume that you are getting good treatment. Leaving it all up to the doc can mean wasting lots of time on inferior treatment.
If you give the first letter of the lyme doc's last name, maybe folks familiar with that NJ lyme doc will chime in with their views.
You also may want to post in Seeking a Doctor forum and ask who is the best lyme doc near you. I have heard from some in NJ who believe they need to go out of state for good, agressive lyme treatment.
I always suggest that people call the lyme support groups in their state (see Support Groups on left side of page) and ask who is getting people well. You want to go to a doctor who has gotten a number of people well. Best if you can be given the names of 3 people that doc has gotten well and you can confirm with them that that doc got them well--meaning they are rid of lyme disease.
As you may know, many doctors treat lyme disease, but only a few know enough to get rid of this disease for a person. Your job is to find one of those few.
Sorry to say it, but so far your pcp acted more like a lyme doctor than your lyme doctor. So, I suggest you look further for a good lyme doctor.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
thanks so much. i am slowly going over the guidelines. trying to take in as much as i can.
i know a few good drs but i can't afford them.
the $$ and the time spent on the not so good drs isn't $$ well spent. Spend the $$ to get treated correctly, or spend the $$ for undertreatment sounds like a waste of $$ and time. The more time spent can also cause me some additional health issues, which is not what i want either.
my pcp was ordering further bloodwork for coinfection testing. So that is a good thing. so atleast something is being done.
thanks again for letting me sound this out.
Posts: 23 | From NJ | Registered: Jan 2012
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posted
Can you post your test results here? Wondering what you mean by "new infection."
Sometimes Drs get confused when reading a Lyme test.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
By the way, I found a good lyme doctor and I completed my lyme treatment 7 years ago. Praise God! I am still symptom free, enjoying my life. I have the same life I had before lyme disease.
I had undiagnosed lyme disease for at least 10 years before a doctor thought to test me for lyme. I was sick for 10 years! and now I am well.
The doc who got rid of lyme for me followed the Burrascano protocol. That's why I believe in it. It worked for me, for my doc, and for a number of my friends--all rid of long-term lyme disease.
I stick around this board for people like you. You see, I wasted 2 years with a doctor who gave me inferior lyme treatment. I try to help others avoid the mistake I made. So, study Burrascano and compare the treatment you get to that document.
When you call a lyme doctor's office for an appt, the first question you ask is, "Does the doctor follow the Burrascano protocol?" If the answer is "no," then I would not make an appt with that doctor.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babs is suspected, and require adherence to rules such as low carb diet, no alcohol, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. He gave away his information for free to whoever wanted it! Did it for years and years. Put it on the Internet for all to see. Read it in his Guidelines.
Posts: 9931 | From Maryland | Registered: Dec 2007
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