Responses to Questions and Comments on our Treatment Posts

I so appreciate those following and I apologize it took a bit to respond to questions. I have cut and pasted them below, from comments, but if I forget one, don't hesitate to let me know. 
1. Once you complete the treatment, can the infection return or does it cure it for good? Also, is this the extent of his treatment or do some people have to go through even more invasive things.
Great question. Our hope is certainly that the infection will be gone for good, but we don't believe that will be the case. It all depends on how long you have had the infection as well as other things I am sure. Dh was first diagnosed with Ch.amydia before we met in 2003, so I don't recall the exact year. That mean at least 10 long years of the infection in his system, definitely that goes against us curing it forever. Now, he hasn't had active signs that he has known about all that time. He took the usual short course of meds and felt better. Then when there is no way he could have been reinfected, he had symptoms again. And again. One time he tested negative I believe, and still received the meds. The third time they didn't bother testing him. The test (swab) is very painful and not particularly accurate. Dh also tested negative on the new urine test he had recently prior to going to NY and testing positive. Does this mean he didn't really have it? Quite the opposite. We believe the meds killed some of the Chlamydia, but only in its active phase (it has a life cycle, that may not be the right word). If any is left, it can spread and remain in the system, each time perhaps getting nastier and more resistant to the antibiotics provided. Repeat doses of the orals only hurt my dh, didn't help him. 
Additionally, there is a good chance Chlamy.dia came down my family line as well. We will never know for sure, but my mom had a miscarriage, as well as both of my older sisters. There are a few classic signs, like my littlest sister (the one after the miscarriage) has a lot more signs of infection and has never been pregnant despite lots of opportunities. She has constant bladder infections, almost no immune system, lots of problems. One of Dr. Toth's book (which I have both as free docs on my computer if you want them) has a quiz in the back to determine risk factors. I can send it to anyone who would like. My family had other risk factors. If my family has passed this through generations, then that is another sign against a complete cure. 
Honestly, I think knowing we wouldn't necessarily get a complete cure from treatment was helpful up front. I know more than one person quite disappointed because that is what they were expecting. Treatment is invasive. It's expensive. Like most things in life, it doesn't come with a guarantee, unfortunately.
What we did do was treat something we know we have with the most comprehensive treatment available for it. And for that, we feel good. 
I learned the typical "full" testing treatment is: testing in the form of a swab for the guy, cervical culture for the girl, ultrasound on the male's prostate, ultrasound on the female, a semen sample for the male. Treatment is a 10 day IV for each (clindamyacin), 5 days of a broad spectrum antibiotic cocktail shots for the male (all five days include 2 prostate injections each day, two of the days included two seminal vesicle injections). [By the way, my dh perseverated on the number of shots prior and it didn't end up really being a factor. Harder days were given more meds, etc. Many days the second shot wasn't felt at all, etc.] Women typically do the cervical D&C and receive 10 uterine lavages of the broad spectrum antibiotic cocktail (some days can be doubled up-for example two after the D&C is common). Changes can be made to meds based on allergies. There is also 30 days of antibiotics following the IV done to tailor the treatment to the results of the cultures. Add ons, to my understanding, are bladder lavages for those with severe reoccurring bladder infections (women), a full D&C for those women that need it, and for the men who have burning symptoms they can numb the penis completely and do what is referred to as a flagyl cream fill inside the penis. We did not do any of the add on items listed. We also did not do a semen analysis (dh had one in 2008 when we were there). We did not test for everything possible. We tested mycoplasma and CT for me, aerobes and anaerobes and just CT for dh. 
2. What have you done as far as probiotics to protect your system during treatment? Have you had any issues with yeast infections with this or past treatment? I struggle with that just under Hilgers antibiotic treatment. Thanks! -Renee
Ironically, we were likely struggling with yeast prior to the treatment so I was worried about that. I had signs of yeast infection, but I let it go assuming it would continue if it was the real deal. It came and went, so I thought it was something else. Dr. Toth said yeast fluctuates based on your cycle so that could have been the cause. One of several symptoms dh was having was likely yeast. We thought it may be due to our internet research prior to going to NY. That has not gone away, he doesn't think. He is going to pay more attention and knows if he still has it, he can get a OTC or prescription cream from Dr. Toth. Since we are not have sex right now, we aren't passing the yeast back and forth and I have had no symptoms during or after treatment related to yeast. I take a  probiotic called Syntol, and another called "yeast management" recommended by a friend. I have taken about two a day and will take them a full four weeks following the end of the orals, so it is expensive. I give my dh align or culturelle, so not expensive probiotics really. He always eats greek yogurt daily with his lunch so he continues that. Both of us feel fine on the orals. I have had some loose stools, but my stomach isn't upset at all so far and it hasn't gotten progressively worse. Dh said he feels the same. Physically, we feel pretty great. Dr. Toth actually says the research on probiotics is very mixed. Dr. Hilger's office offered a suggested probiotic and various immune support. I am completely frustrated i can't find the paper I wrote them down on, but I will update the post if I come across them. 

3. Hi, thanks for sharing this information. I have a few questions for you if you get a chance to address them. Do you know how prevalent this level of infection is? Are we all walking around with latent infection? Can two people who have only had sex with each other have this type of infection? If you have trouble conceiving but were able to carry the baby to term does that mean you do not have infection? Thanks!

This is so important to discuss. 
  • First of all, Chlamydi.a itself is the #1 sexually transmitted disease. It is highly prevalent. 
  • Then consider this: those diagnosed with it think they can take a pill or a few pills and it will be gone. I subscribe to dr. Toth's and other's belief that this is not the case and it can be much more persistent than that. So men that "do the right thing" and get tested and treated and then are given the all clear, could be continuing to spread it to partners.
  • Then think about how they test for it: the swab. Men hate the swab, it is by far the most painful thing my husband has ever experienced (yes, worse than prostate injections). So I imagine most men avoid it. 
  • For those that do test, there are many false negatives. These tests are now machine read to save time and money and that leads to less accuracy. Testing the way dr. Toth does leads to more positives, but he also has a lot more positives than the general population because of who comes to see him. They come to him because they know they have an infection or they know they have all the symptoms. Even Dr. Toth will tell you the test is limited to the area they test-is there active infection in that area at that time. So if all your history and symptoms scream infection, then you probably have it even if your test is negative. In fact, some couples only have one member test positive. Of course both should still be treated. 
  • Unfortunately, Chlamydi.a is spread more ways than just by se.x. It is spread to children through delivery.   So you can be a virgin and have Chlamydia and not know it. You can be married and both you and your husband were virgins before you got married, and both have Chlamydia. Most people don't realize this.
  • Finally, Chlamydia isn't the only infection that causes infertility. It isn't the only infection Dr. Toth tests for and treats. He is a pathologist. He treats all infections. Traditional "STDs" aren't the only ones that cause infertility. Many infections affect fertility. So if you have had STD testing, or are a virgin, you can still have an infection that affects your fertility. When I think about how many people have trouble getting pregnant, miscarry, deliver early..when I think of how many people have unprotected sex and premarital sex...I think infections are a huge epidemic due to being under diagnosed and under treated. One more thing-new research is suggesting Lyme disease (an infection that is spreading widely) may now be sexually transmitted and also passed on through childbirth. I think infections are a big problem in general. Dr. Toth says they are so under researched and that he believes they are tied to more than just IF-heart disease, cancer, etc. The body can't operate the way it was meant to if it is fighting a long term infection. 
4. Wheelbarrow Rider: Forgive me. I'm having a hard time (maybe because I skim what I read) understanding what your ultimate goal is with these intensive antibiotic treatments. And I did not understand why you're husband got some shots in a very sensitive area. Just reading about the cries of pain hurt me tremendously but he's your husband! so discount my opinion if needed.
Airing the Chapel, that may be the result of skimming, or perhaps I didn't address it. I am not sure, so I am glad you asked if you sincerely wanted to know. While I think it is important to treat a systemic infection, I was not 100% convinced we should go to NY. I knew the treatment was expensive and we'd have to fight insurance to get even some paid for. I knew it was no guarantee to fix the problem long term. I knew there was certainly no guarantee of a healthy pregnancy. I knew it was going to painful for my dh. I knew we'd have to leave our children for over a week. I was at peace with our two children. I was also open to the possibility of adoption. I didn't have a clear sense of what we should do. Not in a tormented indecisive way. In a "I see the benefits to both sides" sort of way. So I did nothing despite the recommendation from Dr. Hilgers. And I prayed about it. And what happened was my dh got symptoms. And my dh was miserable. And my dh lead the effort of looking into it and researching it. And my dh made the final decision that we should go. For the possibility to improve our health for us and the children we already have. He also has a strong desire for a third biological child if possible, but we both agreed we would not pursue that if Dr. Toth thought it was not healthy to pursue. This was huge. Because, you see, my husband doesn't like to be away from our children (more than the average parent). He actually has paranoia that something will happen to us or them (he lost his dad in a car wreck at 12). He also doesn't typically go for unconventional treatments. He doesn't like pain (who does?) or needles in even the smallest sense. He is a reasonable guy, a CPA. He was not feeling good. He did his homework. He asked a lot of questions. And as the leader of our family, as well as the primary breadwinner, the one with the day to day symptoms, and the one that had to endure the most during treatment, he said yes. He thought it was best for us and our family. And as he was making that choice prayerfully and doing the research, barriers were removed. Plane ticket credits, hotel credits, deductibles already met, stocks increased in value, work time requested off was granted, my mom was no longer sick and could watch the kids, and things continued to fall in place. Our peace continued so we moved forward. 
Regarding why my dh received shots in the prostate, I have cut and pasted some info from Dr. Toth's site:
Functional considerations: The prostate gland serves three basic functions:
Thanks for all your questions. If this sparks more, ask away. Coming soon...hsg next steps.

Regarding whether one could have an infection if they have trouble conceiving, and yet carry to term, I can only say that I don't think carrying to term in and of itself rules out an infection. People can have an infection and then pass it on to a child that is carried to term. Infection doesn't always lead to total inability to get pregnant, inevitable miscarriage, or early delivery and compilation. It can lead to problems for the child conceived in an infectious environment, but not always. The way I knew I had an infection was through multiple routes: 1) I tested positive for ureaplasma urealycticum during my lap with Dr. H-but Dr. H will be the first to tell you that many many patients test negative with him that respond well to antibiotics, 2) my dh's history with infection, 3) I had brown bleeding at the end of my period with normal progesterone levels as checked by Dr. Hilgers at his lab, 4) my miscarriages were consecutively worse-each they happened earlier then the last; plus the babies showed delay when compared to my dates of conception, 5) every lap showed a ton of inflammation that I was told was due to infection or inflammation, and 6) I did well with antibiotics and conceived healthy children until I overused them, my symptoms returned, and I lost babies again. Things that can make infection worse are: pregnancy, miscarriages, and surgery. I had two losses, had two healthy boys after aggressive treatment, then had a surgery, a pregnancy, a miscarriage, a D&C, a pregnancy, another miscarriage. So lots of making the infection worse. If you want to rule out infection, you can have cultures done during a lap with Dr. Hilgers, but since those aren't foolproof either a lot of it comes down to history and symptoms. I suggest reading Dr. Toth's book and taking the quiz. I suggest joining Dr. Toth's yahoo health discussion board found on his website fertilitysolution.com. That would be a good place to start. 

1. As a stopgap, it determines whether the man is urinating or ejaculating

2. As an immunological organ, it secretes bactericidal fluid that mixes with the ejaculate and protects spermatozoa

3. Not unlike the tonsils, it serves as a filter for bacteria entering the male body through the urethra. The prostate entraps and sequesters invading bacteria, and undergoes inflammatory and structural changes. In a stationery organ this process would ideally serve the body. As the prostate gland contracts every time a man ejaculates or urinates, these sequestrations are imperfect. Escaping bacteria are squeezed into other healthy parts of the prostate. If they enter the ejaculate, the bacteria will enter the female partner’s reproductive canal and may damage both the physical integrity and reproductive performance of the female genital tract. Once pathogenic bacteria breach the prostate, ascending infection to the bladder and to the kidneys or descending infection to the epididymis can occur. I rarely see males with bladder infections or kidney infections in my practice. I meet patients with epididymal infections regularly.


I hope you have read this in it's entirety. While I appreciate your concern for my husband and the pain he endured, I assure you it was quite voluntary and no one was more sympathetic to what he endured than myself. While I in noway discount what he went through, I would like to add women often go through many difficult things while treating infertility. My husband chose to take some of this on himself, and I honestly appreciate that he wasn't just willing to put me through things and then decline when it was his turn. That being said, I wouldn't have thought any less of him if he chose to not do treatment, I was honestly in a peaceful place and would have accepted that. And, I know that for me personally, going through the lab work, laps, mid lines, D&C's, and shots wasn't a big deal. Shots don't bother me, the pain was not ever severe, etc. It was the emotional part that was hard,, and he shared that with me every step of the way. Not to mention giving me the four shots a week through both pregnancies was harder on him then on me receiving them. My husband, though, has much appreciation for what I have been through. Additionally, I see that he has some pride for tackling something that he was somewhat fearful about. He learned what he was made of, in a sense. He told me before he has never been put to the test when it comes to pain. He showed such awe and appreciation for me having been through childbirth (and no, it wasn't natural; actually when my epidural worked I will go on the record as saying it was actually no big deal; but that first time when they refused to give me an epidural because I "wasn't far along yet", yet I was in hard labor due to pitocin-well, I earned my stripes that day). This was the first time I really heard him express  admiration for me in this area. Because I know him, I know he would have been mad at himself if he would have let fear alone be the deciding factor in whether or not we went to NY for treatment. Also, me not nagging him, letting him make the decision, it brought us closer together. Dh, for maybe the first time really immersed himself in this research. It wasn't me. He took a very real personal interest in it this time, even more than before. I had already done the research. We were able to talk about it at a level of detail we hadn't already. We treated our infertility together for the first time. Regardless of the outcome, it was a good experience and we are glad we made the choice to go. Yes, I said we. Dh said he would do it all over again. And that, my friends, is quite the testimony. 


kmab231 said...

Thank you for sharing your experiences, it has been very informative. In fact at my last appointment when Dr. Keefe brought up Dr. Toth I even knew who/what she was talking about!

Anonymous said...

Thank you for taking the time to answer all these important questions. This post was very helpful. How long should dr. Hilgers let his cultures for?

airing the chapel said...

I did read your response to my question (all of it!) Thank you! I now have a much better understanding of you and your husband's motivations for getting this treatment. You have been much, much more willing to submit to medical procedures than I have or ever will.

I remember how much I was on the fence about doing the laparascopy and you asked me why I was hesitating. I'm in the camp that resents all the infertility procedures so that's why we stopped where we did. I am enjoying my lief so much more without the poking, prodding, surgery, and testing. Heck, I've always refused glaucoma tests.

I admire your willingness to address the issues that are critical to you. Both you and your husband are taking action and that's super cool. Blessings and best of luck in your healing.

All in His Perfect Timing said...

Such great info! Thank you for answering these questions, as I had some of them too about your treatment. :)

Amy @ This Cross I Embrace said...

Damn you for not writing this post 5 years ago when I was getting comments on my treatment posts asking who gave me CT and I didn't have the time or desire to get into all the detail!!!!


the misfit said...

I think I may have missed the last post, but this is very interesting information and I appreciate it. Funny thing...when I heard what his treatment consisted of, I cringed, and I was surprised he put up with it. And then I found myself asking, "Have you refused treatment because it would be painful?" Of course I haven't. I've certainly refused things that I thought were taking my life over to an unacceptable degree (so, I admire both of your commitment to seeing this through), but never just because it would hurt. And God knows even with my treatment regimen I've been in plenty of pain. This is not meant as an indictment of your husband, who obviously manned up for the ordeal. It's a fascinating indictment of my own thinking - that the level of suffering I accept without question for infertile women, I expect to be objectionable to a man. (And I suspect I am not alone in this.) What's wrong with me?

WheelbarrowRider said...

Thank you all for taking teh time to read and your comments! Misfit, I think my perspective is the same, that men won't put up with things to the same degree. I suppose its for the same reason we hear that if men were the ones giving birth we'd go extinct. My husband is one, like most I know. that seems to have less tolerance for pain, not more. I don't consider him weak for it, I suppose I chalk it up to men and women not being equal. We have different make up and strengths and in general, I think woman have a higher tolerance for pain. KMAB231, I am happy to talk to you in more depth. It is daunting at times to deal with all the info and if I can make it easier on you, I certainly will. That is the entire point of my blog-to educate and be a resource paying forward like all those before me.