Having Doctor/Treatment anxiety

It is good of you to check in about an IDD. I was forewarned here about IDD, to not expect much, but I had to experience it to believe it. They are on a very specific side of the "lyme wars". My experience was humiliating and shocking. The woman had had a son with lyme, which was a way of me being drawn in and thinking she would understand. She was at least open and upfront with IDD's not staying up with research (to busy). She then proceeded to give me MIS-INFORMATION. In her view - a negative Western Blot is pretty much 100% proof, no lyme. This is counter to so much of what I've read and know. She told me that blood is screened for Babesia before it is donated. WRONG. She told me that lyme is not diagnosed by tissue samples. WRONG. It is the Gold Standard. If you are CDC positive, then they'll treat you. So, if your blood work is crystal clear, then you'll have access to anti-biotics. I would have an open mind, but know, that IDD, for some questing health, are a complete, and total, and utter waste of time. For a good understanding of lyme wars. I love Buhner's take. www.chelseagreen.com/blogs/welcome-lyme-wars/

This woman also had no interest in looking at the results from my Horowtiz screening questionnaire, and didn't even want to consider the symptom list.

She DID test for co-infections, and it all came back negative, but I am learning now, BLOOD WORK IS NOT RELIABLE!

Symptom, treatment, herx, improvement - duh! It is lyme! and then... well, it is more the rule NOT the exception to have a co-infection with lyme.

Post Edited (multifacetedme) : 12/3/2016 9:12:42 AM (GMT-7)

Hang in there, Pmm!! I think most of us have had this type of anxiety. It's so hard to trust doctors after numerous times of not being believed and/or mistreated.

There ARE some VERY good ID docs out there though, that DO know a lot about Lyme, so I would encourage you to go, but stay guarded until you start talking with the ID doc. They may not know as much as they need to - other doctors are not always the best judge of another doctor, in my experiences.

On the other hand, if they are well trained in the area of Lyme, they may be just what you need!

We started a thread titled "Questions to ask a LLMD's?" and the answers that members posted were so great and we even had a request that the questions be put in this thread for ease of finding it. It can be found on page 2 of the "New to Lyme?" thread.

So here are the questions that were posted:

1) How many patients have they treated successfully?

2) Do they believe in Chronic LD or all in your head thing?

3) Their position on co-infections, their importance, testing, and whether you should treat them before, during, or after treating Lyme.

4) What protocol do you use for each of the tick-borne infections?

5) How do you like to start off with new patients?

6) How long they treat with antibiotics? Do you use IV's? and when?

7) Do they think herxing is a good thing or not so good? Do they believe it's dangerous to have a bad herx?

8) What does he/she think about detoxing? What are your thoughts on supportive therapy?

9) How long are you willing to try to treat a patient when nothing is working?

10) How do they ascertain when they believe treatment has been successful and can be stopped? How do they go about that transition?

11) What do they recommend you do if you need to get a hold of them because of a concern? How do you feel about playing phone tag? Can I use email to reach you?

12) Well, I would ask the doctor if he/she attends the lyme conferences - as there is always new information presented.

13) What would be helpful/expected in our relationship so that their license stays protected while also protecting my health? (Like, should you go to them first with issues? What should the Primary Doctor be told, etc.)

14) Why have they chosen to be an LLMD, despite the risk of loosing their license? (The member who submitted this question doctor had a friend who died of it.)

15) Are there any local community groups/forums they attend or recommend that their patients attend?

16) One big suggestion for those visiting their LLMD is to have the LLMD write down on paper any orders, additional supplements (dosage) and advice. When the member who submitted this suggestion first saw the LLMD they said their memory was poor and brain was not retaining much. Most of their Doc's verbal advice they did not retain unless they wrote it down. Otherwise when they got home they had forgotten what the doc told them to do. This is actually quite common. There is a lot of info the first few visits - you'll notice that the docs almost always take notes! A better option - if you can remember -is to take a voice recording device!

**This is not a comprehensive list! Please think of any more questions you may want to ask your doctor that pertains to you/your situation.

pmm73 said...
Thanks, Traveler. I'm hoping she's a good one. Not sure what I'll do next if she's not.

What abx would be appropriate for her to prescribe? Anything I should look out for in terms of knowledge/treatment?

You never did get your question answered.

It might be helpful to know what you've already taken.

Mono therapy isn't recommended...so if you're put on only one antibiotic...there should be plans to add a second one - within several weeks.

There are so many combinations...that the LLMD could choose.

Some commonly used lyme abx:
- mino
- doxy
- azithromycin
- biaxin
- Bactrim DS
- Ceftin or Omnicef
- amoxicillin
- Flagyl
- Tinidazole

Most id docs are like huddie and multi said ...mine had a positive test said it was a false positive just so he wouldnt have to treat ...