Hi ladies,
Sorry I have been unavailable for a while, but it’s great to see there is plenty of action happening out there! I know there has been a lot of conversation in the last week, but I would still like to respond to some of the questions/comments, for the other people who are reading at this level. Below, I have quoted your questions/comments and responded:
“I just wanted to find out if the biopsy and blood tests for Dr Matthias can be done in Perth?”
Heather,
The type and number of blood tests required for you personally, will be determined by Dr M during your initial telephone consultation. Some can be done in Perth. I guess the level of immune markers each person has, really determines the amount of further testing required. The Perth girls I spoke to who were able to just do blood tests in Perth (and not fly to Sydney for a biopsy), both conceived. In my case however, it is a little more difficult.
I had already done everything here that I could, in terms of blood tests. I provided Dr M with copies of my test results and filled in his questionnaire. Then, during my telephone consultation, he said I have "many of the markers" which suggest I have immune issues. He asked me to send blood samples to Chicago because these particular tests cannot be done in Australia (that is my understanding). I don’t know what testing Dr Sacks does, because I haven’t consulted him. Having read Dr Beer’s book though, I am happy with the knowledge Dr Matthias is on the same page as Dr Beer.
Dr M advised me the biopsy could not be done in Perth because it would go via pathology first and they would treat it in such a way that would render it impossible for him to do his specialised testing (hence my trip to Sydney, which was only an overnighter).
“Any tips on how to proceed with either of the doctors?”
For others reading this post, please note: you do not have to go to Sydney to talk to Dr Matthias. You have the phone consultation first. If you are able to do blood tests in Perth and provide him with that information, depending on the results, you may not need to go to Sydney at all. In my case however, it is a little more difficult, which is why I had to send blood to Chicago for testing. However, I did that before I flew to Sydney for a biopsy and hysteroscopy with Dr M. From everything I’ve read online so far from people who have visited Dr Sacks, you do have to go to Sydney for tests and consultation with him.
“Dr. Sacks/Matthias offices can advise what bloods are required and these can probably be completed by your current FS at Fertility North. Re: biopsy - speak to Dr. Chapple the Medical Director of Fertility North as he will advise when/if it can be completed before your Sydney appointment as usually the biopsy is done at a particular time of your cycle.”
Iolanda,
I respectfully wish to advise (and I am sorry to say) that my personal experience with clinics I have been to in Perth (which do not include Fertility North) has been that the doctors have been unwilling to carry out extensive blood testing in terms of immune issues. So I did the research myself, went to a GP, gave him a long list, and went to Clinipath and got the tests done (although they had to make a few phone calls because I was obviously asking for unusual things!). When I showed them to my IVF doctor and my GP, they both said everything was 'fine'. For example, I have tested positive on numerous occasions for ANA (among other things) and each time, the local doctors told me it didn't mean anything because many people test positive at the same level and therefore my level was not considered an issue. Unfortunately, not all those people are trying to conceive. This is why patients like us, need doctors like Matthias and Sacks, because they understand immunology and they have a very different perspective on specific test results. The tests I researched and carried out, provided DR M with a lot of information which was obviously enough for him to decide I needed to send blood samples to Chicago for further testing. It is very unfortunate we don't have anybody in Perth who we can go to for the same information and support and I am highly appreciative of Dr Matthias, after all I have been through.
“CB/parent2b ... how have you both been going...as it has been a few months?”
Heather,
It has taken some time to get all the results and I must admit that while it is well worth sending blood samples to Chicago (if required), it wasn't an easy feat. However, if any of you find after consulting Dr M that you need to do that, please contact me via this site again and I will be happy to offer some tips and point you in the right direction. Dr M is very busy and the biopsy needs to be done in the luteal phase of your cycle so getting theatre time booked in was rather tricky and then xmas came along too so that’s why it took a few months overall, to get all my results.
My testing (which you will be able to read about in Dr Beer's book) included: NK Assay Panel, Leukocyte Antibody Detection (LAD), DQ Alpha and DQ Beta (hubby's blood sample required too) and TH1:TH2 intracellular cytokine ratios.
Interestingly, my IVF doctor told me some time ago I do NOT have NK cells. I’m not sure why he thought that. The main result of my testing is that I have elevated NK cells in my uterus. This confirmed my suspicions (over the last 4 years at least) that I have implantation issues. I have high CD56 and CD57 was also high but not as much as CD56. Dr M was able to detect the uterine NK levels as a result of his biopsy. Incidentally, he only does a biopsy under anaesthetic. He also performed a hysteroscopy while I was under, and removed some small polyps. The whole experience was fine, painless and I was well treated.
The NK Assay Panel (blood test) showed I have a bit of imbalance with CD3 (a little high) in relation to others, but no elevation of NK cells in the blood.
The LAD test result is that only 1 of the 4 was a little low (T cell IgM).
My TH1/TH2 levels are in the normal range, which is good.
The DQ Alpha/Beta testing showed my hubby and I share 1 gene (03) but according to Dr M this only causes a mild issue.
So, my prescribed treatment is IVIG (or immunotherapy) for which I will need to return to Sydney. Once again, it’s such a shame we cannot get this treatment in Perth. I will also be taking dexamethasone (because Dr M says it is better for NK cells than Prednisolone), Clexane, antibiotics to cover egg collection and embryo transfer, Caltrate Plus (to help the effects of the steroids) and high dose progesterone.
I know there is no guarantee we will conceive as a result of IVIG therapy, but I'm certainly willing to try and at least this time, we will be in there with a chance. Actually, I really wish I could have G-CSF injections, but it is my understanding it is currently unavailable in Australia. So far, we have wasted a lot of time, money and precious eggs, going through IVF cycle after IVF cycle and all the time we were only making the situation worse (see response to Angel, below). It has also been extremely difficult emotionally and very trying for our marriage. I would really appreciate it if more IVF doctors would do the research and consult with immunologists and take immunological issues seriously in the fertility area.
“The biopsy of film showed that I have a higher than average level of natural killer cells with a higher level of CD57 cells in my uterus - still trying to figure out exactly what that means however he said he would treat me with a mind form of immune therapy if I decided to do IVF with him (20mg of clexane). My blood test for NK cells was normal”.
Angel,
We seem to share the elevated uNK cells. Unfortunately, Prednisolone and Clexane have not been enough for me. I have used them both in numerous cycles. I did conceive (ICSI) the very first time we included Prednisolone and Cardiprin, but it has never worked for me since. I don’t have my book (Is Your Body Baby Friendly) handy at the moment so I can't quote Dr Beer or the exact page in the book, but my understanding is, the NK cells get stronger, the more we try. So each and every one of those embryo transfers I had since my first pregnancy, just made matters worse. I guess that's why I now need IVIg and dexamethasone in conjunction with clexane.
I hope by sharing information here, I have been able to help someone else who may be suffering with undiagnosed immune issues. It is my wish that all Australian IVF clinics will some day soon, carry out all the necessary immune related tests, BEFORE letting anyone embark on an IVF programme.
Best wishes to all.