This thread contains multiple links/information. This information is not confirmed/checked by Fertility Friends and readers are reminded that FertilityFriends.co.uk or its owners are not responsible for the content or accuracy of external internet sites, or of the accuracy of medical information shared by members other than those in our "Ask A Professional" section.
Please also read the author's notes at the bottom of this post.
Please also read the author's notes at the bottom of this post.
**For a more print friendly version of this whole thread, Click here** (but don't expect it to be the same tomorrow - more info is trickling in every few days!)
To go directly to each section, click on the large blue letter in the index.
1 Important note (See bottom of this post).
2.1 Abbreviations you may see in immune threads
2.1.1 Are there any extra abbreviations used in immune threads?
2.2 Acupuncture/reflexology/aromatherapy/massage/homeopathy etc
2.2.1 Will alternative therapies help my immune treatment? (for Supplements see below)
2.3 Alloimmune versus autoimmune issues
2.3.1 What are alloimmune and autoimmune issues?
2.4.1 What is an antibody?
2.4.2 Anti-ovarian antibodies - see corticosteroids
2.4.3 Anti-thyroid antibodies - see Thyroid
2.4.4 Anti-progesterone antibodies - see NK assay, CD19+5+
2.5.1 What does having a positive anti-cardiolipin test mean?
2.6.1 How can I see an immune fertility specialist/get Chicago tests run?
2.7 Aspirin - see thrombophilia (below)
3.1 Beta HCG tests
3.1.1 Why do I need to do 2 pregnancy blood tests?
3.2 Bleeding in pregnancy
3.2.1 I am spotting/bleeding in pregnancy - am I miscarrying?
3.2.2 I am spotting/bleeding in pregnancy - what should I do?
3.2.3 Will bed rest help the pregnancy if I am bleeding/spotting?
3.3.1 Why should I breastfeed my immune Tx baby?
3.3.2 Can all babies breastfeed? Can all mothers make enough milk to breastfeed?
4.1 Chinese herbal medicine (see Supplements and also Mycology - below)
4.2 Chlamydia Trachomatis
4.2.1 What is Chlamydia?
4.2.2 How is Chlamydia tested?
4.2.3 How could I test positive for Chlamydia when I have tested negative on other tests?
4.2.4 How could I test positive for Chlamydia when I have previously had antibiotics for it?
4.2.5 Why should I have the Chlamydia test?
4.2.6 What do I need to know about the Chlamydia test by menstrual blood PCR?
4.2.7 How much does the Greek Chlamydia test cost?
4.2.8 How long will the results take to come back?
4.2.9 What is the treatment for Chlamydia?
4.2.10 When should I retest for Chlamydia after treatment?
4.2.11 Do I have to clear Chlamydia before I can cycle?
4.2.12 My partner doesn't want to take all these long courses of antibiotics. Does he have to?
4.3 Clexane (lovenox), fragmin, aspirin and other blood thinners
4.3.1 What are heparins? What are they used for in fertility treatment?
4.3.2 How do I take clexane?
4.3.3 When do I start and stop clexane?
4.3.4 What are the risks/side effects of clexane?
4.3.5 How much does clexane cost?
4.3.6 Where should I fill my prescription for clexane?
4.3.7 Will my GP prescribe clexane for fertility or during pregnancy?
4.3.8 How is aspirin taken?
for Cordyceps, see Mycology, below
4.4 Corticosteroids ('steroids') - prednisolone, dexamethasone, prednisone
4.4.1 What are corticosteroids? What are corticosteroids used for in fertility treatment?
4.4.2 How do you take corticosteroids?
4.4.3 When/how do I stop taking corticosteroids?
4.4.4 What are the risks/side effects of corticosteroids?
4.4.5 How much do steroids cost?
4.4.6 What conditions are steroids normally prescribed for?
4.5.1 How much does immune testing and treatment cost?
4.5.2 Do you have any tips to save on costs?
4.5.3 How do ladies find the money to pay for their Tx plus immunes?
4.5.4 I cannot afford any immune testing or any of these immune treatments. Are there any other possibilities?
4.5.5 I am pregnant and panicking about the costs of ongoing immunes. How much do I really need to buy for baby? Can I cut costs?
4.6 Cytokine ratio (TH1:TH2) test
4.6.1 What is the cytokine ratio test?
4.6.2 Please explain my cytokine ratio test results?
4.6.3 How is the cytokine ratio test different to a TNFa measurement test?
4.6.4 What are the sample requirements for the cytokine ratio test at RFU Chicago?
4.6.5 How long does it take to get the results of the cytokine ratio test back?
4.6.6 What are the treatment options for high TNFa ratio?
4.6.7 How much does the cytokine ratio test cost?
5.1 Deciding to see a reproductive immune specialist
5.1.1 What are the most common reasons for deciding to have immune testing/see a reproductive immune specialist?
5.2.1 Is there anything I should eat or avoid eating to help my immune issues?
5.3 DQ Alpha Genotype (DQa) test
5.3.1 What is the HLA-DQa test?
5.3.2 How much does the DQa test cost?
5.3.3 How do I understand my DQa results?
5.3.4 If I have DQa matches, what can I do?
5.3.5 Why do people worry about having a (4.1, 4.1) embryo?
5.3.6 Should I have the DQa test?
5.3.7 How long do DQa results take to come back?
5.3.8 What are the sample requirements for the DQa test at RFU ?
6.1 Endometrial biopsy
6.1.1 for sampling the uterine lining to test for infections, for uterine NK cells (CD57), and for normal lining growth - see uterine biopsy below
6.1.2 Endometrial scratch biopsy/creating 'implantation points' during a hysteroscopy
6.3.1 Should I exercise as normal during my immune fertility cycle?
6.3.2 Should I exercise as normal during my pregnancy?
7.1 Factor V Leiden, Factor II Prothrombin
7.2 Fears about immune treatment
7.2.1 I am worried about taking immune drugs (prednisolone, clexane, Humira, intralipids, IVIg)
7.2.2 I am worried about giving myself injections
7.2.3 I am worried because I am getting different advice from different doctors
7.2.4 I am worried because I forgot to take my medication on time or that I don't understand the instructions
7.2.5 I am worried that my cycle won't work because I am stressed, or that my treatment has not gone as smoothly as I was expecting
7.3 Fragmin - see Clexane - above
8.1 G-CSF/neupogen and KIR testing
8.1.1 What is G/CSF therapy?
8.1.2 Practical aspects of G/CSF therapy
8.1.3 Should I test for the KIR activator defects
8.1.4 What does my KIR result mean?
8.2 Gestone (and cyclogest, crinone, utrogestan)- progesterone
8.2.1 Why is extra progesterone often prescribed for immune Tx?
8.2.2 How are progesterones administered?
8.2.3 Can progesterone prevent a threatened miscarriage?
8.2.4 How much does gestone cost?
8.2.5 Can you take too much progesterone?
9.1 HCG shots
9.1.1 What are HCG shots used for?
9.2.1 What is Humira? What is it used for in fertility treatment?
9.2.2 How is Humira given?
9.2.3 What the risks/side effects of Humira?
9.2.4 Why do I need a TB test before Humira?
9.2.5 When should I retest my cytokine ratio after Humira?
9.2.6 How long does Humira last in your system? How long before my treatment should I take it?
9.2.7 How much does Humira cost?
9.2.8 Do I have to have Humira? Can I get/stay pregnant without it?
10.1 Insulin resistance/gestational diabetes/polycystic ovaries
10.1.1 Should I be tested for insulin resistance?
10.1.2 What can I do about insulin resistance/PCOS?
10.2.1 What are intralipids? What do they do?
10.2.2 How long do the benefits of intralipids last?
10.2.3 Who can't have intralipids?
10.2.4 What are the risks/side effects of intralipids?
10.2.5 How are intralipids given?
10.2.6 Can I have intralipids administered outside of London?
10.2.7 Can I have intralipids administered on a weekend?
10.2.8 How much do intralipids cost?
10.2.9 How often do I need intralipids?
10.2.10 When do I stop intralipids?
10.4.11 What supplies do you need?
10.2.12 Can I work whilst the drip is given?
10.3.1 Can I have IVF with my NHS clinic/local clinic/abroad but still have specialist immune treatment?
10.3.2 Does it matter where I have IVF or what protocol is used?
10.3.3 What is the long protocol? The Short protocol? The A/ACP? Mini-IVF? Micro flare? Estrogen priming protocol
10.3.4 What is the best stimulation drug?
10.3.5 How do I decide whether to have donor egg or own egg IVF?
10.3.6 What strategies are used to improve IVF outcomes?
10.3.7 How can I estimate my chances of IVF working for me?
10.4.1 What is IVIG? What does it do?
10.4.2 How long do the benefits of IVIG last?
10.4.3 Who can't have IVIG?
10.4.4 What are the risks/side effects of IVIG?
10.4.5 How is IVIG given?
10.4.6 Can I have IVIG administered on a weekend?
10.4.7 Can I have IVIG administered outside of London?
10.4.8 How much does IVIG cost?
10.4.9 How often do I need IVIG?
10.4.10 What supplies do you need?
10.2.11 Can I work whilst the drip is given?
12.1 Karyotyping tests?
12.1.1 What is karyotyping?
12.1.2 Where can I get karyotyping tests done?
13.1 LAD test
13.1.2 Should I have the LAD test?
13.1.3 How much does the LAD test cost?
13.1.4 What are the sample requirements for the LAD test at RFU Chicago?
13.2 Level 1 tests
13.3 Level 2 tests
13.4 Lining issues
13.4.1 What treatments are available for a thin uterine lining?
13.4.2 What is a good lining and how is poor lining diagnosed?
13.5.1 What is LIT (Lymphocyte Immune Therapy)?
13.5.2 Why is LIT controversial?
13.5.3 What are the alternatives to LIT?
13.5.4 Do I have to have LIT? Will I get pregnant/stay pregnant without it?
13.5.5 Which immune doctors support LIT? Who doesn't promote it? (see below for where you can have LIT performed)
13.5.6 How do I decide whether to have paternal or donor LIT?
13.5.7 What is pooled donor LIT?
13.5.8 How long does LIT last?
13.5.9 I still don't understand LIT or donor LIT?
13.5.10 Would I still want LIT/LAD test if I am using egg donation?
13.5.11 Would I still want LIT/LAD test if I am using donor sperm?
13.5.12 Can I have LIT if I am pregnant?
13.5.13 Where can I get LIT?
13.5.14 Do I need to worry about my Rh- status when having LIT?
13.5.15 What medication can reduce the effectiveness of LIT?
13.5.16 Who can be a donor for LIT?
13.5.17 What screening tests does my partner (or donor) need?
13.5.18 Are the test requirements strict?
13.5.19 How much does LIT cost?
13.5.20 How do I retest my LAD after LIT?
13.5.21 How can I book in with Dr Tsagaris in Athens and ask any queries?
13.5.22 Where is the LIT clinic in Athens? What's the procedure? How long will it take?
13.5.23 Is it difficult travelling to Athens and getting to the clinic?
13.5.24 When should I have LIT?
13.6.1 What is Lovenox?
14.1.1 Are there any tests I should be doing if I know I am going to lose this embryo?
14.1.2 What are the standard tests for recurrent miscarriage?
14.2 MTHFR (see thrombophilia - below)
14.3 Mycology treatment - chinese mushroom treatment
14.4 Mycoplasma genitalium, Mycoplasma hominis
14.4.1 What is mycoplasma?
14.4.2 How is mycoplasma tested for?
14.4.3 How is mycoplasma treated?
15.1 Natural conception with immune treatment
15.1.1 Can I try naturally with immune treatment or do I have to do IVF?
15.2 NK assay/K562 test/NK cytoxicity assay
15.2.1 What is the NK assay?
15.2.2 How is the NK assay different from NK measurement/absolute NK level? How is it different from a uterine biopsy for NKs?
15.2.3 What is the K562 test plus immunophenotype?
15.2.4 Please explain my NK assay results?
15.2.5 What is the difference between the NK assay and the NK retest (at RFU Chicago)?
15.2.6 How much does the NK assay cost?
15.2.7 How do I get an NK assay run with intralipids as well as with IVIG?
15.2.8 What are the sample requirements for the NK assay?
15.2.9 Should I have the NK assay test?
15.2.10 How long do the results take to come back?
15.2.11 What are the treatment options for elevated NKa?
15.2.12 What alternative NK tests are there?
16.1 Omeprazole - see Chlamydia - above
16.2.1 How can I improve my chances?[/i]
16.2.2 I think I have OHSS?
17.1 PCOS - see insulin resistance
17.2 PBMC - peripheral blood mononuclear cells
17.3 Poor egg/embryo quality - see IVF strategies above
17.4 Poor ovarian response - see IVF strategies above
17.5 Pregnancy (also see two week wait and pregnancy - below)
17.5.1 What immune testing and treatment protocols are typically followed in pregnancy?
17.5.2 My NKa has gone up in pregnancy - is this normal? What do I do? Will it harm my pregnancy?
17.5.3 My pregnancy test after immune Tx was positive - What do I need to do?
17.5.4 What is NHS 'low risk' and 'high risk' pregnancy care?
17.5.5 Do I need to keep having retests during pregnancy?
17.5.6 What are adequate progesterone levels in early pregnancy?
17.5.7 Where can I see normal embryonic/fetal growth charts? Is my scan normal?
17.5.7 Where can I see normal embryonic/fetal growth charts? Is my scan normal?
17.5.8 Is my bHCG normal?
17.5.9 What is my due date? How many weeks pregnant am I?
17.5.10 My bHCG has risen less than 66% in 48 hours - can I do anything?
18.1 Question lists
18.1.1 How do I make sure I get all my questions and concerns answered?
19.1 Recurrent pregnancy loss - see miscarriage (above)
19.2 Resources and links
19.3 RFU Chicago and RIC (UK)
19.3.1 How do I check which tubes I need for my Chicago tests?
19.3.2 Where can I find contact details for RFU Chicago?
19.3.3 How do the tests on offer at RIC (UK) compare to those at RFU (Chicago)?
20.1 Secondary infertility
20.1.1 Can I have immune or clotting problems if I have previously had a healthy pregnancy?
20.2 Steroids - see Corticosteroids
20.3 Stimulation for IVF
20.3.1 Any dos and don'ts during stimulation?
20.4 Subchorionic hematoma - see bleeding in pregnancy
20.5.1 In general
20.5.2 Agnus Castus/Cohosh/soya isoflavones/yam etc
20.5.3 Bee pollen/propolis/Royal Jelly
20.5.4 Bromelain/Pineapple extract
20.5.6 Chinese herbal medicine
20.5.7 Coenzyme Q10
20.5.10 Evening primrose oil
20.5.11 Fish liver oil (cod liver oil, halibut liver oil)
20.5.12 Flaxseed oils (and other vegetable omega 3 oils)
20.5.13 Folic acid (and B6, and B12)
20.5.14 L-arginine, L-carnitine and other amino acids
20.5.16 Milk thistle extract (silymarin)
20.5.17 Nettle leaf
20.5.18 Omega 3 fish body oil (not fish liver oil)
20.5.19 Prenatal multivitamin/mineral (e.g., Pregnacare, Tommys, Tesco, Boots etc)
20.5.21 Protein powders (e.g., whey protein)
20.5.23 Resveratrol/grape/grapeseed extract
20.5.24 Quercetin (green tea extract)
20.5.27 Tumeric (curcumin)
20.5.28 Vitamin A and beta carotene
20.5.29 Vitamin E
20.5.30 Vitamin D
20.5.31 Wheatgrass and Barleygrass
20.5.34 Supplements for men
20.5.37 Supplements for ladies (and men) with Crohn's disease, Ulcerative Colitis, Coeliac and other bowel diseases and diarrhoea
20.5.38 Beta carotene - see Vitamin A above
21.1.1 Which tests do I really need?
21.2 Thrombophilias - MTHFR, PAI-1, Factor V Leiden, APLAs
21.2.1 What are they?
21.2.2 How are they tested for?
21.2.3 How are they treated?
21.2.4 Where can I get more information/support?
21.3 Thyroid tests
21.3.1 Do I need my thyroid activity testing?
21.3.2 What is thyroid peroxidase? What is thyroglobulin antibody?
21.3.3 What thyroid tests do I need?
21.3.4 What causes thyroid problems?
21.3.5 What are the symptoms of under or overactive thyroid?
21.4 TNFa - see cytokine ratio
21.5 Timescales for immune treatment
21.5.1 What sort of timescale is typical for immune testing and treatment?
21.6 Tocolytics - atisoban, nifedipine, ritodrine - 'womb relaxants'
21.7 Treating empirically
21.7.1 What is treating empirically? Can I just take immune meds without testing?
21.8 Trying again]
21.8.1 When should I try for another baby after my immune pregnancy?
21.9 Two-week wait (between ovulation and pregnancy test)
21.9.1 Any do's and don'ts during the 2ww and pregnancy?
21.9.2 When should I do a pregnancy test?
22.1 Ureaplasma urealyticum
22.1.1 What is ureaplasma?
22.1.2 How is ureaplasma tested for?
22.1.3 How is ureaplasma treated?
22.2 Uterine biopsy
22.2.1 How is uterine biopsy done?
22.2.2 What is it for?
22.2.3 Please explain my uterine biopsy results?
22.2.4 How much does uterine biopsy cost?
22.2.5 Should I have a uterine biopsy?
22.2.6 How are uterine biopsy problems treated?
22.2.7 Which labs will do a uterine biopsy?
23.2 Viagra - see Lining issues(above)
23.3 Vitamins - see Supplements (above)
24.1 Weight/BMI/visceral fat
24.1.1 Is it worth the effort to lose any excess weight before my treatment?
24.1.2 But heavy ladies, smokers, drinkers and other people with unhealthy lifestyles get/stay pregnant all the time, so how can weight and lifestyle factors be so important?
24.2.1 Why do I have immune issues?
24.2.2 Why did my fertility treatment not work?
24.2.3 Why did my pregnancy not continue?
25 X, Y, Z
1 Important note
I have put this together with the intention of reassuring and helping other FFs deal with day to day questions during their immune treatment and testing. This information has been put together by a patient and has not been reviewed or endorsed by any doctor. Some of the information is my personal opinion and may not necessarily be accepted by others - and is based on my experience of being treated by Dr Gorgy - so the protocols used by other doctors may be different and Dr Gorgy's advice to other patients will always take into account their own circumstances so may be different to my experience. If at any time you have concerns, your consultant or your GP should be your first point of contact. I have mentioned the views and treatments of other doctors where I have become aware of them, but this FAQ is probably most relevant to patients of Dr Gorgy.
IF YOU HAVE ANY COMMENTS, SUGGESTIONS OR ADDITIONAL QUERIES, PLEASE CONTACT ME BY PM - so that I can amend this FAQ and keep it tidy. Please bear in mind that immune treatment is controversial and is not accepted by all clinics - but the purpose of this FAQ is to help ladies get through the immune treatment they have chosen to do - not to justify it or get into a debate about the evidence for it.
This FAQ is in alphabetical order - so probably isn't quite as useful to read as a 'starter guide' but hopefully there is some useful info in it somewhere.
Thanks to everyone who helped with suggestions for this thread!