Thank you to all of you who have checked in on me in various ways during my silence. It means a lot to know that you are thinking of me.
I wish I could share some good news with you all. Alas, I am in a very dark place these days, chemically and physically.
I have not been myself. Nor do I know who myself is anymore.
From what I can tell, there are multiple things at work, and they are all putting me into a tailspin of sorts…my understanding from the message board for patients of Dr. WK is that the antibiotic treatment can really put your immune system out of whack for a bit in the short-term. And I am discovering that a few other women have had similar symptoms before and/or after the treatment (particularly joint pain and autoimmune symptoms) and that there are some other factors that may be at work – yes, we all have a bacterial infection in common, which the antibiotic treatment helped to put in check, but some have been diagnosed with Lyme disease as well, and hypothyroidism, too….So, while I may have taken care of one piece of the puzzle for me by getting treated for the bacteria, there may be other things I need to explore to deal with the other challenges I’m having, which may or may not be related to the fact that my body was coping with this long-term bacterial infection. Like everything else in this journey, on one hand it’s good to know there may be solutions out there, but on the other I’m just feeling so frustrated and tired and angry and depressed about it all. Most other women on the board, though, seemed to have gotten the treatment when they were still having cycles and therefore caught things in time in order to enjoy better cycles post-treatment and MANY have conceived post-treatment. So, if any of you out there are considering antibiotic treatment, please don’t let my experience sway you – if I had gone sooner, I might have had a better chance at a better outcome for my fertility.
Here is the muddled laundry list of things I am dealing with/thinking about:
(1) The allergy scratch test that Dr. March Hare sent me on came back negative for everything. The March Hare, however, thinks I am allergic to something and that is what is causing my joint pain and so on. His first guess is nightshades and his second is dairy and/or gluten. He advised me to stay away from nightshades for 2 weeks and then stay away from dairy + gluten for 2 weeks and then stay away from all of it for 2 weeks. I have yet to fully begin this process, and I am looking into taking the blood allergy test because, really, I just want to know exactly what to avoid rather than do all the above. Lazy, I know, but I feel like after all I’ve been through already I deserve a shortcut.
(2) I am continuing with twice daily drops of DHEA, plus HappySense or FemMed Sleep at bedtime, plus from the 15t-30th of each month I am applying Progesterone cream to my wrist. The March Hare has also added a solution mix of Estradiol and Testosterone that I am to insert in my vagina every other morning. I’m also still continuing with my Synthroid for the time being. I really do feel like a hot mess, taking all these hormones to try to feel better (and so far, NOT feeling better at all).
(3) My recent TSH test came back okay..a little less than 1. The March Hare was pleased with that. I honestly can’t give you the details of everything else at this point (I should have asked for a copy, but I was so overwhelmed by it all I wasn’t thinking straight…)….My Estrogen was low, I think, and DHEA low, and the big news for me was that my FSH was (are you ready?) 112. That is not a typo. It is a hundred and fucking twelve. It was 42 on CD3 in October, which was the highest it had ever been on CD3. The highest non-CD3 FSH result I’d ever had prior to that was 53. I should not have been surprised at 112, considering I have had only 2 periods in the past year, but I couldn’t help but be rattled. The March Hare was not concerned, though…he said 112 merely means that my brain is screaming at my ovaries, which are not working well because my hormones are not in balance. That is all. He is still not convinced that my cycle will not return, once we straighten all of this out. On the Dr. WK message board I found a few posts from women who said that following their treatment their FSH skyrocketed – something about an increased TFN-A….this is getting into immunity stuff now that I’ve never fully understood – I know a lot of IF blogs have talked about NK cells and intralipids and so on and it’s all been way over my head. There is a doctor in California who is apparently the leading expert on all of this. In a desperate moment Friday, I filled out an online form for a consult with him but I’m not sure if I will be able to make that happen.
(4) The pain in my hands and feet and right arm/shoulder and lower back continue. Mostly at night and in the morning, but some during the day, too.
(5) I feel chemically depressed most of the time. I think I am going crazy. I went on an insane hair colouring frenzy – 5 appointments in 5 weeks to try colouring my hair in a drastically different way. I think I just wanted to try to become a totally different person because I am feeling so unhappy with the person that I am. Now I am going back on Tuesday to go back to something close to my original colour. See? I am nuts.
(6) My mammogram and breast ultrasound were both normal. (Small mercies.)
(7) The March Hare thinks we are also dealing with a PTSD issue for me, which no one has ever suggested before…he said we need to work on reducing my stress and then if that doesn’t help, explore removing the memory. Not sure what that means. Hypnosis?
(8) There’s been some talk on the Dr. WK board about Low-Dose Naltrexone (LDN), which had been prescribed to me by Dr. Click Clack last year and I stopped taking it in October before my treatment with him…I think I need to see about renewing my prescription to see if it helps. I’m taking everything else…why not?
(9) I’ve never been tested for Lyme disease, but I think I need to look into this. As well as a test for Rheumatoid Arthritis, which my mother had…scared of that one.
(10) My GP has finally referred me to an endocrinologist, but the earliest they can see me is November. (laughable, no?)
(11) Dr. March Hare has ordered an ultrasound and another round of bloodwork and I’m to go back to see him in a month.
(12) I sent Dr. WK an email the other day to see what he thinks of all my symptoms. No response yet.
(13) I’m trying to eat well and exercise and all that, but honestly I’m just so disheartened about everything I’m just trying to get by, mostly.
(14) I’m not really thinking about having a baby anymore. I’m sad that it never happened for me, and I’m jealous of women who are younger and fertile and all that, absolutely I am. I try not to be, but I am. I wish I was 25 again with my whole life ahead of me…I feel old and used up and like I’ve wasted a lot of my time and energy on the wrong things so I don’t have much to show for my time here – no baby, no big career, none of the things I thought I would have by now.
Thanks for reading this very down post. I hope my next one is brighter.