Had another miscarriage :(

[PetRescue]

Hi everyone, I have been doing very well on my Lyme protocol (not so much AP without mino or doxy) and after the go ahead from my LLMD, went and got pregnant in July. I credit the success to the abx (amoxy & zith), going gluten free (mostly :), working out daily and daily use of the infrared sauna at my gym. Because I have a history of 2 previous m/c's, I was followed super close. Things were going well (with a couple of bumps), I even got to hear the heartbeat, and then at my 9 week ultrasound, the heartbeat had stopped. I am devastated, but eager to move on and get a new plan! Genetic testing is being done on the embryo to try and determine whether it was me or the baby. I have a feeling it was me. Even though most literature says there is no increased risk, there are some specialists who believe in the immunologic cause of recurrent miscarriage. I have an appointment with a reproductive immunologist on September 20th. The only bad thing is she uses pred, humira, and heparin. But I will do anything to have another baby, and it would only be temporary.

I know that this forum is mainly in support of AP for rheumatic disease-however-I am stuck between a rock and a hard place! If we believe in the infectious theory of these diseases, then does that mean I should just wait out AP/Lyme treatment longer? I did just see my LLMD and I asked to be put back on Minocin, which he agreed to. He also requested tissue samples from my surgery to be tested for Lyme, but we don't have the results back yet.

There is this doc in NY who actually believes that hidden infections are the cause of miscarriages and infertility, but I have heard very poor things about him. He is suppose to be very difficult to work with and very expensive.

http://www.fertilitysolution.com/

The reproductive immunologist I have been referred to studied under this doctor (who is now deceased):

http://www.repro-med.net/repro-med-site2/

I belong to a support group of women who see this doc and say great things about her. Many, many success stories. My concern is the amount of immune suppression she suggests. Of course that is the mainstream treatment of autoimmune diseases, and as much as I'd like to avoid it, I'm desperate :(.

So, if I were your daughter (or sister or friend), what advice would you give me? I could…
1) Continue on with AP/Lyme protocol and hope that fixes the problem (whatever problem may be…myco, c. pneumoniae, etc)
2) See a very difficult/expensive OB in NYC who credits pathogens in infertility
3) See an expensive reproductive immunologist who has been referred to me by my OB and who has good success keeping people pregnant, but uses traditional meds, including pred, Ivig, etc.

I know you are all just fellow patients and so kind to even be reading my long, disjointed post. But so few believe in the infectious theory of things, it's a hard route to take. No one understands, not even my family. And certainly not my docs. And I am desperate. I am getting older (I'm still just 30) and want to complete my family. Any insight would be appreciated, even if it's a smack saying “wait”…I'll understand.

~jen

[lynnie_sydney]

Jen – I am so very sorry to hear your sad news. I cannot imagine how you are feeling. I dont really have any knowledge base from which to suggest any particular route to take, others will possibly have experience, knowledge and a point of view for you. If it were me, I'd at least wait for the results of the tissue samples and a talk with my LLMD about them. Ultimately, it will need to be your choice. Just wanted to say that my heart goes out to you. Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[vera]

Hi Jen,

I sympathize with you so very much.  Having had multiple miscarriages before finally delivering the one child we have, was an emotional roller coaster.  What you said about hidden infections/miscarriages never occurred to me before.  I thank you for that tremendous insight to my past losses.  I believe Lynnie is on track in the 'wait' and see aspect.  I was 36 when I finally had our daughter.  In the meantime, nourish your body and get lots of rest.

Best to you,

Lori 

[NikiG.]

Hi Jen,
 I am so truly sorry to hear about your loss. It must be very difficult, frustrating, and saddening for you.  But don't give up hope.  I'm sure things will work out for you, and since you have a child already, you know that it is possible for you.  I think, whatever you think of her/her music, that Celine Dion is a prime example of never giving up hope on having another successful pregnancy.
 
 In terms of advice, I don't have any experience with pregnancy personally, but I do know that my wonderful family doctor here in Canada said that they did treat a woman who had many, many miscarriages with abx after the patient did the research and convinced the doc to give abx therapy a try.  The woman was able to eventually get pregnant and had a child.  I'm not sure what abx were used, but it took a while, and some dedication and patience for things to work out. But it did work out. So maybe there is an inifectious aspect to multiple miscarriages after all – or there at least seemed to be for that patient.
 
 I also know that my mother – who is NOT a doctor but who does have a science background and is a very knowledgeable woman and a big believer in doing tons of research (both literary and by asking many people) – she firmly believes in the need to PROPERLY DE-TOXIFY THE BODY PRIOR TO GETTING PREGNANT.  A too-toxic body, she says, will use any means necessary/available to get rid of it's toxin over-load and will even dump the excess burden of toxins into the fetus – causing the baby problems or possibly a miscarriage.  And as a personal example, my mom sites her pregnancy with me and my fraternal twin sister.  My mom did not really know about detoxing/cleansing prior to getting pregnant, and she had a job, at that time, that was kinda toxic, with a lot of chemicals around.  During the pregnancy, she noticed that my sis was rather calm and didn't kick too much, or only in the later afternoon.  I, on the other hand, would kick like crazy all night long and into the next day. . . the same time in a person's natural diurnal cycle when their body is processing/eliminating waste (4am-noon).  My mom believes, after doing years of investigating, that her body was naturally processing and cleaning itself out over night, and dumping it's toxins directly into me, but not (or not as much) into my sister. That's why she thinks I kicked-up so much, and at thattime – I was kicking up a storm in fetal-protest.  [Possibly, she says, that I was the toxin-elimination site b/c I was the first embryo to become implanted in her womb, and therefore, the first pick for a toxin elimination/dumping site, compared to my implanted-second, fraternal twin sis.]
Not surprisingly though, I was born a sickly baby, and have always been much more frail and much smaller and slower-growing (even before I got JRA) than my hardy, big, twin sister.
 And if you think about it, maybe that's why some women have SUCH a hard time with morning-sickness when pregnant, as my mom definitely did throughout her pregnancy. They throw up b/c their bodies are already toxic, and become more so with the taking in of extra food and oxygen, and dealing with the extra waste-material from the baby.  They just need to get rid of the toxins somehow, and throwing up is one of the options.

 So, de-toxify, De-toxify, DE-TOXIFY prior to getting pregnant, according to my mommy!! But NOT during pregnancy though, as it would possibly end up with the body dumping toxins that are released from the cells into the fetus anyway.

 I don't know if any of this makes sense to you, or sits right with you in your mind, but I just thought that I'd share from my mom's/my own life experiences and investigations what we thought.

Keep smiling and be well,
Niki

[Lynne G.SD]

Hi jen;
    I am soooo sorry about the baby.Is there any chance that you could wait a while until your Lyme issues are resolved.I know that Celiac can cause spontaneous miscarriage but you seem to have the gluten  controlled.Lyme definately can be passed on to the baby and I suspect that might be the cause.Best to talk with an LLMD about it.
      Lynne
                    

[Kash]

I am so sorry for your loss. I had 3 and I know how hard it is. My humble advice would be:
Rest and heal (emotionally and physically)
Wait for test results to see what is going on
When the time comes to make a decision; trust your instincts

My second child was born when I was 35, and my boys were six years apart. I wanted them closer, but can now see it worked out best.

Hugs
Barb

[redrock]

Sorry for your loss. People are having kids later and later these days so you have plenty of time.

[mschmidt]

Jen,

So sorry about your loss–can't even imagine going through that.  I'm not going to tell you what to do, as that's a very personal decision, and you already know how I feel about you wanting to have another baby right now.  I'm 40, and even though I desperately want a child, I will wait until I'm in remission to attempt that, because I don't want to be a sick mom.  I thought I had the option to do fertility but, my doctors said absolutely NO to over-stimulating my body with excessive hormones, since they believe that hormones play a role in developing autoimmunity in women.  There are so many ways to be a mother, and I will embrace whatever path that ends up being, when the time is right.  You are SO young, and have so much time ahead of you to be a mom.

Lyme (especially Bartonella) can lead to infertility so, I would want to get to the root of that maybe being a contributing factor in what's going on.  And, I'm sure you know this already–you can pass the infection along to a fetus.  Immunosuppressive therapy (especially cortisone) can set you back if you have Lyme disease so, I would have a serious conversation with your LLMD about using those type of drugs.  Dr. P and I had a very long conversation about pregnancy at my last Lyme Foundation fundraiser.  Does he know about all this, because I'm surprised he hasn't deterred you from going that route? 

You've been through a lot–please make sure to take time to rest your body.  The last thing you need right now is a flare from all the stress.

Take Care of yourself!

Maria

[linda]

Hi Jen,

I too am sorry about your miscarriage and hope that you can find a solution. I'll bet if you polled all of the women here they would tell you that they've had at least 1 miscarriage, and i would be included in that group. It's interesting that the immune system could be the culprit, we do know that our immune system is supposed to take it down a few notches when we're pregnant which is why so many of us go into remission while we're pregnant but have terrible flares once the baby is born and the immune system kicks back into top gear. It does seem logical that in someone with an overachieving immune system it just doesn't lower itself enough and sees the fetus as foreign. Just a quick question, are you Rh  positive or negative?(blood type here, not Rh factor for rheumatoid arthritis) If you're negative you're supposed to get an injection of something, I can't remember what it is, so that if your next baby is Rh positive your immune system will not attack it. I'm Rh neg and had the injection after each one of my births; I had a miscarriage after all 3 of my living children were born and we weren't really planning on having any more children, all the same it was not an easy thing to deal with and in the days following in my grief I completely forgot that they had not given me that injection. It has to be given within 48 hrs I think. But I thought I would check with you because I think you are supposed to get the injection after every pregnancy.

The meds this immunologist uses are all contraindicated for pregnant or nursing women. I'd stay away from pred whether I was pregnant or not. Mtx causes birth defects , and Idk about heparin but I'm guessing it's because of the risk of hemorrhage. Why is she rx-ing it?, I'm probably being dense but I thought it was used for clotting disorders.

I'm wishing the best for you in your efforts to start a family and hoping you get some good news soon.

[Lyn_x]

Jen,

A fourth option (to your posted 3):

According to information from my LLMD,  a large percentage of borreliosis patients test hypercoagulable. Simply–blood is too thick and wants to clot.  This can and does cause all kinds of problems–a google search will turn up a wide range of info.

From a handout from my LLMD: “Hypercoagulation as a cause of diseases, was first discovered by a reproductive endocrinologist. He had a theory that his patients were infertile due to insufficient capillary blood flow to keep the fetus alive. Testing revealed abnormal coagulation test results, so heparin treatments were started. Heparin is a blood thinner. The ladies on heparin not only became pregnant, but they stated delivering babies.”

I tested hypercoagulable and am trying the more natural route until my next appointment.  This includes Vitamin E, Omega 3 fish oil, Bromelain, B12 injections, and a reasonable amount of ginger root tea.  There are actually a few more 'natural' remedies but already I have noticed a difference in less than a month.

Whether or not this is an issue with you is, of course, between you and your doctor and a good lab, however you may wish to be tested since a remedy is available.

Lyn_x

[Conniel7777]

Hello Friend,

 

 I have nothing to offer in the way of advice.. I can only say I am so sorry for your loss and I will send healing vibes your way.  ((( hugs )))

 

 

Connie   >^..^<

[Randy]

Hi Jen,

My wife Julie and I had a number of miscarriages and other pregnancy losses.  It is very heartbreaking and tough on everyone.  By the way, my wife does not have any AI's, thankfully – so that's not the cause.  However, if I recall, 1 out of every 4 pregnancies, or 1 out of every 4 woman have had miscarriages.  So it is way more common than we tend to think.

Anyway, here is a link to a book that Julie claims “gave us our family” (of two little boys). 

http://www.amazon.com/Pregnancy-After-Loss-Miscarriage-Stillbirth/dp/0425170470

We had no problem getting pregnant, just keeping it. Finally, we figured out that Julie had a (luteal phase) progesterone deficiency and how to properly supplement it … after trial and error.

Similar to our common AI plight, you have to be very proactive about figuring out what is going on and figuring out what to do. Don't just listen to one doc or the ones most conveniently located, go to the best you can find and afford, and be smart about it all.  I hope you get this book and I hope it helps.

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[mkbeeliever]

[user=1441]Conniel7777[/user] wrote:

Hello Friend,

 

 I have nothing to offer in the way of advice.. I can only say I am so sorry for your loss and I will send healing vibes your way.  ((( hugs )))

 

 

Connie   >^..^<

Ditto for me Jen…thinking of you!  Blessings…
Michelle

[Kajed]

Jen,
I had my 4th child a year ago. He was my first since being dx'd with RA. I was on the verge of miscarriage and had preterm labor my whole pregnancy. I got pregnant while on Enbrel and stopped with my first positive test. I didn't take any RA meds for the rest of my pregnancy. However late in my pregnancy I received betamethasone injections which is a steroid which is a steroid and it stopped my contractions completely for the 2 weeks that the steroids were in me. That was the first time I wasn't feeling contractions since I was 9 weeks pregnant.
I know that everyones situation is different and I didn't know about AP before I got pregnant but I felt like if I had it to do over again I would be less hesitant to take meds during my pregnancy to reduce the preterm labor. The perinatologist that I saw scoffed at the idea of the RA connection, but my regular OB was the one who made the correlation to the steroids, and my Rheumatologist wasn't surprised at all. I also didn't have anything close to a drug free pregnancy since I had to take nifedipine and terbutaline to stop the labor.
Another thought, tetracylines are contraindicated for pregnancy and breastfeeding (they can stain the babies skin teeth and tissues permanently) I was on Humira after I had my baby and it helped me to be able to breastfeed him for a few months before I started flaring too badly. THen I was on Prednisone and Humira for the first couple months I was on AP. I like both drugs and felt like they helped through a situation that is going to be tough whatever path you take.

Good luck, I know you will sort things out and make a great choice. If you have more questions about pregnancy let me know.

Kelli

[Kim]

Jen,

I am so very sorry for your sadness.

Take care…..kim

[Author]

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