2.27.2010

Infections and IF

I tend to get a lot of questions on this topic, but yet, when I sat down to write this I was at a loss and didn't know where to begin.  For me, infection was the missing piece to the puzzle, and treating it successfully was the key to having our son.  If I am fortunate to get pregnant again, we will replicate this treatment plan. 

HOW DID I KNOW?
First off, Dr. Hilger's found infection (ureaplasma) during my lap with him.  He treated with 2 weeks doxy (and dh) and thought that was enough (2006).  Then I had tail end brown bleeding (TEBB) still and both cycles that I got pregnant with my babies I miscarried.  A phone consult with Dr. Hilger's confirmed that infection was likely still to blame and I needed more.  Then I chose to do a phone consult with Dr. Toth. Prior, I got on his website and downloaded his two free books that are on there full text.  I read and it sounded like me.  For example, there is a history of miscarriage in my family (mom and sisters); I have a history of bladder infections (so severe I was hospitalized more than once).  My miscarriages were increasingly "worse" (Gabby was sick from day one).  There is extensive history of heart disease and cancer in my family.  The list goes on.  I wrote notes to the side of the pages.  I filled out the self-assessment at the end of one of the books.  I scored high.  I filled out the history forms sent to me by the office and I had the phone consult ($375 if insurance doesn't cover).  Dr. Toth is very kind, spends lots of time talking to you, and confirmed what Dr. Hilgers already knew.

HOW DID I/WE GET THE INFECTION?
Infections can be passed vertically and horizontally.  I had family history, but I also had reason to think that I got it from a past boyfriend and also my husband.  So, there really is no telling-likely every way!  But I have learned through all of this that blame isn't important, it is about focusing on a solution.

WHAT DID WE DO ABOUT IT?
It is very important to do something about the infection, if possible, prior to getting pregnant again.  I was fortunate enough that Dr. Toth and Dr. Hilgers agreed that strong oral antibiotics were worth a shot (as opposed to having to go to NY for testing and then "full treatment" of uterine lavages, an IV for dh and I, and prostate injections for dh-this would take 10 days for treatment alone and would likely cost almost $20,000.  It was unclear what would be covered by insurance, but not much!).  The short reasoning for this full treatment is to really knock out any infection by putting tons of antibiotics directly on the source of the problem, combined with an IV to really hit every area hard.  Dh and I were put on 500 mg of Biaxin 2x's a day for 21 days.  During that time we were told to avoid.  We took a probiotic to protect our stomachs and the only side effect I had was metal taste in my mouth. Water helped.  (btw, it didn't take long for me to see a positive side effect-my menstrual blood became bright red-like open wound, fresh blood, bright red like I had no idea that menstrual blood could look like.  This was a sign of success-the question is could I keep the infection at bay).  Dh had no problems.  After that, we were told we could ttc while taking Biaxin every cycle on CD 1-10.  I told Dr. Toth and Hilgers that I only wanted to try this for 3 cycles (they had mentioned 3-6) because I had gotten pregnant quickly before and I figured if it didn't happen fast, I should move on to full treatment and not waste time with anbiotics that were only causing my bacteria to develop resistance.  (I got pregnant on the 3rd cycle).  Dr. Toth (who is very kind to be available via email) told me he would be happy to have me as a patient, even though had not come and seen him in NY, and he would follow and advise me through the pregnancy.  He recommended an IV after my hcg doubled-10 days clindamyacin-and Dr. Hilgers agreed.

HOW TO SET UP A LOCAL IV?
Since I knew ahead of time I would need an IV quickly should I get pregnant, through my mom (a hospital social worker) I found a local infusion company that could do the IV in my home (no hospitalization required).  The company wasn't national, but Apria is, and you can go to their website, enter your zip code, and find the local infusion center closest to you.  You can find out if they take your insurance.  You can find out if they place the line (mid line) or if you need to find a company that can place the line.  Ask them for recommendations if they can't.  If Apria isn't close, call the local hospital and ask them who they recommend to do infusions?  After that, Dr. Toth's office sent Dr. Hilgers' office the information to order the IV and Dr. Hilgers' office conversed with my infusion company to set it up.  They work weekends and knew I would want the IV immediately should it come to that, and they were willing and able to accomodate.  Likely a day wouldn't have mattered though.  I simply had to call when I needed them.  They were wonderful.

LIFE WITH AN AMBULATORY IV?
The IV was in ten days.  The mid line placement is a pretty big deal (lot of blood), but they numbed it and I had no idea I was bleeding everywhere until I saw the clean up.  I didn't feel a thing.  The pump was in a fanny pack that was black and not too noticeable.  I could cover that part of my arm with a bag and not get it wet, so I could still shower.  Instead of having the line go out the arm of my shirt by my hand, I threaded it back down my shirt (stomach) and it wasn't noticeable.  I went to work and had no problem.  It wasn't really that hard to sleep-I had it on the flood next to me.  I learned to change the bags every other day.  I learned to change the batteries, etc.  It was surprisingly not a big deal.  I.felt.wonderful on the IV for 2 reasons-I knew I was do everything I could to keep this baby, and I was probably more hydrated than I have ever been in my life.  I also felt clean-placebo effect-who knows?  But others have shared this sentiment.

A LITTLE MORE ABOUT DR. TOTH-
Dr. Toth and his lab are different because they are set up to test for every known pathogen; the lavages (they do uterine commonly, but also bladder) aren't available anywhere else that I can tell.  His theories are unique/cutting edge; not always well received by local docs to implement and there not a network of believers like Hilgers' Napro trained docs.  There are a few doctors that buy in, but not a formal network.  Dr. Hilgers went to Dr. Toth's office for two weeks to study his methods.  Dr. Hilgers isn't as hard core into the abx as Dr. Toth, but he does agree Dr. Toth is onto something and is working to replicate his lab.  It will take time.  For now, he tests for the heavy hitters in the same way Dr. Toth does (in house so no dammage during shipping, lets them grow longer, etc).  This way there is less likely to be false negatives.  Unfortunately a lot of folks test negative for bacteria locally and then they test positive using Dr. Toth/Hilgers methods-frustrating for sure!

AFTER INITIAL IV?
In my case, we chose to go to NY at this point and do testing after I was pregnant and had the IV.  This was because we had frequent flier tickets, a free place to stay, and wanted the peace of mind.  Later, I had a CT PCR test done locally and shipped to NY for Dr. Toth to analyze.  I had a third one that was done and analyzed by my local ob/gyn.  Even though they turned out negative, we chose to do the IV at delivery "just in case."  My local ob/gyn had to be on board and order this.  It was helpful to frame it as no different than the IV I would get had I tested positive for group B strep during my pregnancy.  This is well accepted among the medical field and seemed helpful.

I hope this information helps answer your infection related questions.  I am happy to answer any others, I just wanted to write a comprehensive post instead of you having to look back at multiple posts in my history.  I think infection is crazy common.  I am glad we discovered it.  It isn't just about IF, but overall physical health. Dr. Toth believe infections are related to heart disease and cancer.  He also believes that if you have an infection and get pregnant, you can have a very sick child-from ear infections to ADD and autism, and even a child that has infertility his/herself.  I wouldn't ever mind having a sick child, of course, but I want to do everything I can to prevent it if I can help it.  I hope this helps you all know where to go if you suspect infection or where to look to see if you have symptoms.  The way we were able to go about doing this was incredibly inexpensive (IV was about $100-$150 out of pocket and antibiotics were pocket change), thankfully, though it easily could have run much higher.

13 comments:

Chasing said...

I was just wondering about this stuff. During my lap with Dr. K, she found uterine strep. Afterward, dh and I had a month's worth of amox. and I thought we were good to go. Well, slowly more TEBB has been showing up each cycle. At my last cycle review, Dr. K has us now on biaxin for 21 days. Do you happen to know if uterine strep requires the same level of aggressive tx that was mentioned in your post? Thanks so much for the info.

Leila said...

This is all fascinating! I had no idea that this stuff can even happen. I am being educated every day, and I thank you for taking the time to explain it all. I feel like I have a place to refer people.

WheelbarrowRider said...

Chasing, I am not sure, but it sounds like it since it didn't respond to amox, which is a very low level antibiotic. I am glad she is now treating you more aggressively. Personally, I would ask about cyclical treatment after the initial 21 days, just because it is easier to stay on top of it than to be able to get a handle on it after it has come back from being treated (I think each time it comes back it is more resistant/stronger). That is why I am a fan of going big initially and just knocking it out if possible. I hope you are on a probiotic as a preventative for your stomach. And be on guard for yeast-limit your sugar while you are on it and treat yeast infections as soon as possible. I recently let my yeast get really out of hand and that can actually put you at risk for more infections. I plan on posting about this soon.

Sissy said...

You are so knowledgeable on this subject, and I would think you are a great resource for others trying to conceive. I would have no clue that you could wear an IV around at home and work! Wow.

Anonymous said...

I think the address you listed is wrong. Should it be fertilitysolution.com???

This_Cross_I_Embrace said...

I would warn against just doing orals if uterine infection is suspected. It doesn't work for everyone that quickly, and taking a really strong oral dose will build up quite a tolerance in your system.

I went through full treatment in Nov '08 (10 days uterine lavages, IV abx, and DH prostate injections) and then repeat uterine washes in May '09. I've been on cyclical abx (high-dose Zithromax) for about 10 months, recently took a break for several months, and will do another dose of doxycyclene at DT's request next month.

I do think more people should be aware of his treatments and their efficacy. At this point, though, I am in need of more aggressive reproductive immunology treatment, which I find most people on the DT ya.hoo board who do NOT have success need to turn to. But I will never regret having made myself and DH healthier with our DT treatments (even though my TEBB was not cured, but I strongly suspect mine was due to infection AND clotting factors).

WheelbarrowRider said...

Anonymous, you are correct-thank you! I was laying in bed last night thinking I had meant to actually put the link in and realized I had probably forgotten to go back and do that. It is corrected now.
TCIE and others, I completely agree that if you have an infection, going bigger is better with treatment so as not to create resistant bacteria. I realize full treatment isn't an option for many due to cost, and some are just looking for a place to start. I just described in detail the protocol I was on because that seems to be what Dr. H is doing with many, as well as other Napro docs. I highly recommend talking with your doc about pros and cons of trying orals first in your specific situation. In my case, I did not want to be on them for long, due to resistance and so I set the 3 month timeline. I have done the same with this go round of ttc as well. As expensive as full tx is, I do think it may be necessary for our overall health and not just IF, which is why we are seriously considering it. I really just wanted to increase awareness with this post, point to some resources, and give you something to talk with your physicians about-perhaps another avenue in tx your IF. It isn't really to subsitute for medical advice or anything-I am no doctor! :) I hope that clarifies.

Nicole said...

LOVE. THIS. POST!

This is such GREAT info to share. Thanks for posting. Its amazing, AMAZING the power we have as women to share our journey. What did we all do before blogs?

Ann - Building a Nest said...

This is all wonderful information for you Napro bloggers and I know it is greatly appreciated that you took the time to detail it all. Fascinating! I had no idea about the IV bag! Great job, J!

WheelbarrowRider said...

Thanks, Ann! It's not just for Napro blogger though-Dr. Toth actually has patients from all over the country too. Some of them are now coming to Dr. Hilgers, but that is just because the Napro folks on his yahoo health board have made quite an impact with their success rate. I think that if someone suspects infection and has an open RE (like yours), than perhaps just suggesting this course of action and the reasoning behind it might make him/her give it a try. I know my ob/gyns were not Napro and they were kind enough to script the delivery IV and would have scripted the orals too, potentially, if necessary.

inallthingsgood said...

Thanks for this post! I love your detail. I so often get hung up on the practical stuff -- like, "where in the world would I find an IV anyway?" I love your details of how you went through it.
What would be some signs to look out for to suspect an infection?

WheelbarrowRider said...

What a nice reaction from everyone on this post-thank you! IATG-the main sign for me was tail end brown bleeding (at the end of my cycle), but that can also be progesterone related so it isn't a sure thing. But if you know your prog is good, then infection is possible. I think the self-assessment at the back of the free book (on the website) would help you point to the related risk factors. If you were dx with bacterial vaginitis more than once, I think that is a big one. Girls and guys pass infections and I think they told dh that peeing a lot in the night was a sign. There are so many and they can be more than one thing, so I think the self-assessment would help you look at the big picture. I know when I read the book, I was thought "this is so me!" I looked back at my files and found a sheet I submitted to Dr. Toth with the history questionnaires. It was a supplement of things I thought important (from reading the books, likely) but weren't covered elsewhere. They included:
Bladder infections; family hx of cold sores, conjunctivitis regularly (often wake to eyes feeling “swollen”; joint pain; dx with cervicitis repeatedly-said it looked red and angry; had an over production of mucus producing cells in my cervix-had a cryo done; mom had nephritis as a child; Dr. Hilgers found ureaplasma during culture; hormone problems; endometriosis; have had lymph nodes swell for no apparent reason; horrible UTI following D&C; consecutively worse miscarriages; TEBB; joint pain; fatigue; chronic abdominal pain not particularly explained by endo; dh had sleep apnea (prior to surgery that corrected it). I hope that helps!

natural fertility said...

Infection can be found anywhere and you can also get it anywhere. The most important thing is that you have consulted a doctor and ask for proper medication prior to conceiving. This will help you a lot. In line with this, I found this site that maybe helpful. http://www.natural-fertility-prescription.com