LymeNet Flash: What to do when LLMD stops being LLMD?

This is topic What to do when LLMD stops being LLMD? in forum Medical Questions at LymeNet Flash.

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Posted by Talktel (Member # 7980) on :

HI all,

I ws using an LLMD who was trained by the best, and recently he has shown definite signs of not treating according to ILADs or chronic Lyme and co.

He goes strictly according to blood tests, and if they're negative he doesn't treat.
Probably scared to treat.

I'm off abx except for infrequent bicillin - every five to ten days - and I know that's not enough. (with Samento and teasel root.)

I've been of abx for two months and am slipping.

Compounded by that i jus tgot a huge cold and fevers, and I don't have the stamina to move.

My husband became anti chronic Lyme-and doesn't believe in antibiotics.

I have many co-infections, and don't know if negative results coming up now are accurate.

I have an appointment to another LLMD in a different state in November. I hope he's good, I was reccommended by my Lyme disease rep to him.

I've fired by the best doc-supposedly- and now this guy is scared to treat me.

Is this other llmd- Dr. P. - good? does anyone know?

I'm just so discouraged.

This LLPA also told me to take 50mg of minocyclin every now and then when I take the bicillin to ten days.

I'm nervous about my colon- and what does a low dose like that do?

I got an inflamation of the colon when I took doxy. So now I can't take any oral abx.

What do I do?

** edited to remove LLMD's first initial **

[ 09-30-2013, 06:02 PM: Message edited by: sixgoofykids ]

Posted by Keebler (Member # 12673) on :

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IMO, it's never a good idea to do just any antibiotic alone, even if late in treatment. Here's why:

How just doxycycline (or other antibiotics, alone) can cause chronic lyme:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=120369;p=0

Topic: replication within cystic forms of lyme
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Posted by Keebler (Member # 12673) on :

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Other options:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

Topic: RIFE Machine - Reference LINKS

LL Naturopathic links here, too.
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Posted by Talktel (Member # 7980) on :

Keebler,

I don't know anyone who does rife machine near me. And that's affordable.

I'm in shock that my doc would become like this.

Has anyone heard of Dr. S. P in Connecticut?

Posted by Keebler (Member # 12673) on :

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You can buy your own rife, or maybe get together with others to share. Best with a LL ND's guidance, still, if that is not an option you can become as educated as possible and strike out on your own.
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Posted by Talktel (Member # 7980) on :

I have too many co-infections to strike out on my own.

Don't know enough. and am too sick not to be under someone guidance-and medical treatment.

Posted by Abxnomore (Member # 18936) on :

P has been around a long time. Last I knew he didn't get into adrenals, candida, heavy metals, supplements etc. and I'm not sure about co-infections.

If that still is the case, that would not be your best choice. Perhaps, call the office and see how he treats, if he follows Dr. Burrascano's guidelines, ask what labs he uses for testing, etc.

Also, place a post in "seeking a doctor" and ask patients of his to contact you.

[ 09-30-2013, 06:03 PM: Message edited by: sixgoofykids ]

Posted by Talktel (Member # 7980) on :

I just placed a post in seeking a doctor.

Abxnomore, that is not good info you are giving me.

I had made an appointment to him for November.

I thought i would go to him for another opinion, but this "llmd" has made it clear that he won't treat me anymore.

So now I'm desperate for a LLMD.

Posted by Talktel (Member # 7980) on :

I should say he didn't make it 'clear' by his statements, but by his manner that my blood works are better- my bands are lower and my co-infections came back negative- even though I had been diagnosed with them in the past.

So he assumes that I must be doing better. He's strictly following blood works.

Ergo-he can stop aggressive treatment, especially as he's concerned about liver issues.

My pcp said my liver is fine. I can go ahead with meds.

Posted by Lymetoo (Member # 743) on :

You cannot tell by bloodwork whether you are "better."

Your test will always be positive. Go by how you FEEL; your symptoms.

Posted by Keebler (Member # 12673) on :

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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
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Posted by we'll win (Member # 11112) on :

You're definitely right going to a new Lyme doc. It happens sometimes they get scared. As for your husband....well....I'd like to have a talk with him. If it's not going against protocol-I don't want you getting in trouble with Lyme net- you can private post me and I will give you my phone number. I have had Lyme since 1990, need my brain, have run a Lyme group, been involved with advocacy, stay on antibiotics and naturals, and perhaps can offer him insights from outside his immediate family.

In any event you have my concern, sympathy, empathy, and wishes that you find a great doctor and get better.

If it's any consolation, we're all in this together.

[Try to] Keep Smiling.

We'll Win (eventually)

Posted by Talktel (Member # 7980) on :

you're all wonderful! I don't think my husband will talk to anyone.

He's not a bad guy. I think its denial, and he doesn't even want to educate himself about Lyme diseae--chronic, that is.

BTW, we'll win--I love your moniker!

Posted by lax mom (Member # 38743) on :

I don't have any good advice, other than I too think you are right seeking a new LLMD.

I just hope someone can point you in the right direction and help you find a great one ASAP.

[group hug]

Posted by Talktel (Member # 7980) on :

thanks lax mom!

I'm exploring three options now. I hope they take me as most docs don't want to take a complex case.