Feb 6 is the day

[jbourke]

Hey gals,

SO for those of you who are patients of DB, can you give me any tips for my first apt with him. I will be talking to him on the phone on Feb 6. I am very excited for this! Any advise?

JO

[Lauren2005]

Hi Jo,

This is taken from the Yahoo immunolgoy group's files (are you a member yet? If not, join right away!! All it takes is a Yahoo e-mail address. Seriously, there is no substitute.

How to prepare for your Dr. Beer consult

Information gathered from Immunologysupport group discussions
http://groups.yahoo.com/group/immunologysupport/

Updated 7/6/05

Contents:

I. Consult protocol
II. General tips and suggestions
III. Questions for Dr. Beer


I. Consult Protocol

Dr. Beer has a very organized approach to consults. Discussion may be organized as follows:

I. Brief niceties and introduction

II. Review of Lab results and recommended treatments - this can take
some time (Questions are welcome at this time and any time; but it's
probably best to focus on lab/treatment questions.)

III. Open discussion and Q&A - good time to ask the general health
questions.

IV. Review of next steps.

II. General tips and suggestions

Some people like to have ready:

- List of questions
- Test results for reference
- Current supplements/medications,
- Paper, pens, maybe your computer (if a phone consult)
- Phone recorder (ask Dr. Beer if this is OK first)

Other suggestions:

1. It’s very important to write things down, both before and during! Some people tape the telephone conversation with a small device available at Radio Shack – but be sure to OK this with him first.

2. Ask questions that are most important to you and leave small ones to the end. Take your time talking to him - take a full hour and learn as much as you need. Also, ask your husband if he has anything to ask too.

3. Questions related to treatments and lab results are fine during the initial discussion, but any leaps to conclusions seem to be better left for the end of consult Q&A period.

4. Tell Dr. Beer everything about your health, even things you only suspect are connected. You want his opinions on how everything is connected.

5. Include your spouse into the consult. Dr. Beer can easily win over a skeptical spouse with his kindness and thoroughness and medical common sense. Spouses are often impressed with Dr. Beer.

6. Take a calendar. You can use this as a reference when discussing cycle questions and medication timing such as: when to start /stop meds, when to try to conceive (especially helpful in IVF cycles).


III. Questions for Dr. Beer

Please note: These are general patient questions only. More specific questions can be asked once a patient’s test results and medical history are known. The question list below to serve as a general guide only.


General questions


1. What are our chances at a successful pregnancy WITH immune treatment?

2. What are our chances at a successful pregnancy WITHOUT immune treatment?

3. What are the chances I will be one of those patients you cannot help?

4. How did my immune problems start?

5. What are the long term health consequences of my immune problems?

6. With immune treatment, what are the odds per cycle that I will conceive?

7. How will we know when it is “safe” to conceive? What test results are needed?

8. What tests do I need to repeat when while still trying to conceive? How often do I need to repeat these?

9. When I receive a positive pregnancy test, what do I do?

10. How will my treatments change once I receive a positive pregnancy test?

11. What tests should I have during pregnancy and how often should I have them? Ultrasounds? Monitoring?

12. What are the chances of a loss on full immune treatment? First Trimester? Second trimester?

13. How will these immune treatments influence my health?

14. What is the total cost of these treatments preconception up through to delivery?


Blood level NK questions

15. What does my NK Assay result test mean? Will IVIG work for me? How bad are my numbers?

16. Do I need IVIg? How much? How often?

17. What is the success rate of full term pregnancies with IVIg
that you have seen?

Humira/Enbrel/TH1TH2 questions

18. What triggered my uterine NK cell /cytokine problem?

19. How will we know that Humira (Enbrel) is preventing uterine NK cell activity without doing a biopsy? How will we know if the Humira is working? What happens if we get some kind of cytokine flare in the 2nd trimester (after we have stopped the Humira)?

20. What side effects should I expect with Humira or Enbrel?

21. What do my cytokine (TH1TH2) results mean? What are my chances of my cytokines “flaring” on Humira (or Enbrel)?

LIT/ DQ alpha questions

22. What does my DQ-alpha test mean?

23. Could I benefit from LIT?

24. Do I need donor LIT?

25. Why are my blocking antibodies so low if I have had a live birth before?

26. What is the significance of a DQ alpha match between my husband and I?


ANA/prednisone questions


27. What are the long term health implications for my positive ANA result?

28. What are the side effects of prednisone? dexamethasone?

Thrombophilia/Lovenox questions


29. What are the long term health risks with my MTHFR condition?

30. Should I have my family tested too?

31. MTHFR - does the homocysteine level matter? Is MTHFR result different from the homocysteine issue?

32. What are the risks of taking Lovenox?

Hormone/cycle questions

33. How soon after ovulation do I start progesterone?

34. Are HCG shots during luteal phase/early pregnancy beneficial?

35. Light periods –is that an issue?

36. If I had antibodies to progesterone, HCG, or other hormones, what would the
symptoms be?

37. How early do I start pregnancy testing in the cycle?


Natural Medicine

38. Have you ever seen immune conditions improve with natural medicine? If so, what natural medicines would you recommend?

39. Do you work with an acupuncturist. If so, who?

40. Will fish oil interfere with my Lovenox?

41. Is it safe to be on Humira and natural anti-TNFa agents at the same time?

Insurance questions and other

42. My insurance will not cover labs or medications prescribed by an
out-of-network doctor. Can I have a local doctor order the medications?

43. How do you work with a local doctor? Can I consult with you, bring your
recommendations to her, and have her contact you if she has concerns?

Hope that helps, Jo! Congrats on completing the testing! Do you have results yet? You can ask to have them faxed to you ahead of time...

All the best,
Lauren

[jbourke]

Geez Lauren, I didn't know that was on the yahoo site. I am a memeber, but there is so much activity that I rarely read through the emails. I have downloaded tonns of the info from the site though. Thanks! JO