Lyme diagnosis. No symptoms. No pregnancy? Very overwhelmed!

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YepLilly
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 2/7/2018 12:40 PM (GMT -6)   
Hi everyone,

This is my first post here. I have just been diagnosed with Lyme. I'm CDC positive (I have 6 bands in the 10-band test and 2 in the 3-band test). The test we used was MDL (Medical Diagnostic Laboratories). Initial treatment is standard Doxycycline (400mg per day) for a month or so.

That said, I have none of the associated symptoms and I don't recall being bitten or having a bulls-eye rash. I don't live in a area that's prone to Lyme either. Deep down, I feel this is a false positive (although this is probably me being in denial). Is that even an option?

My doctor ordered the test because I have Hashimoto's and EBV (no active mono) and I haven't been able to get pregnant in the past (I'm in my mid/late 30s now though).

I've been reading about Lyme in pregnancy and congenital Lyme. Based on the findings here, I wonder if I should stop looking for a child at all, whether the natural way or through IVF. Thoughts?

This has been VERY overwhelming. Not just the diagnosis but also the thought that I might never become a mom now cry

Thanks for reading and looking forward to your input.

(edited to make subject more clear)

Post Edited (YepLilly) : 2/7/2018 11:16:53 AM (GMT-7)


Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 2/7/2018 12:53 PM (GMT -6)   
Hi YepLilly!
Welcome to our community - while I'm happy you found your way here, I'm very sorry for your situation.

Since you don't have symptoms, we would normally say that it may not be necessary to treat - but since you are/want to be (?) pregnant, that definitely throws a monkey wrench into things.

The thing is, if you have been trying to get pregnant and can't - it may be due to Lyme. I had active Lyme (with active symptoms) but was undiagnosed when I was having kids. I did have some issues with getting pregnant, and I lost 3 pregnancies (I was 5 months along with one) before I finally had 2 live births.

2 things I'd encourage you to do - One is read the articles here - it's the most accurate site I know of for those with young kids or are pregnant and dealing with these infections. He is also a very well known LLMD for young kids because he's successfully treated so many. /sites.google.com/site/drjoneskids/pregnancy-and-lyme

The other thing I'd encourage you to do is to be sure to be tested for other infections that often come along with Lyme. You can take an online questionnaire to help you determine if you have the symptoms of these infections here: www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html

And, one last thing that I'd like to suggest - stay open to adoption if this doesn't work out so that you are comfortable having children of your own. I honestly began to think I was going to have to adopt if I wanted kids, although I did finally have kids.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2550
   Posted 2/7/2018 12:53 PM (GMT -6)   
What about the possibility of contracting sexually? Just a thought.

Dr. Horowitz has had success treating pregnant women and babies cord blood is negative for lyme disease.

YepLilly
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 2/7/2018 1:12 PM (GMT -6)   
Thank you so much for your reply! I'm currently not pregnant but would like to be. We are open to eventually adopting but also know that it is a long and expensive process with no guarantees. I'm wondering if based on my condition and on the data around Lyme, I should just forget about my dreams of becoming a mom.

I will continue reading and researching, but right now I'm just overwhelmed. I've cried so much all these years and now even more with this diagnosis. I feel like I'm at a new crossroads and I just don't know what to do.

ETA: Regarding co-infections, I'm positive for Bartonella and Babesia.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 2/7/2018 1:22 PM (GMT -6)   
Well, if I was you, I wouldn't give up on having a child! It may depend on your age (sorry!!!), but waiting until you have had some treatment may just be what you need!!

As K07 said, we do know of doctors that treat women through pregnancy if it's necessary.

The thing is, many don't even realize what all the symptoms of these infections are, so I would encourage you to use that questionnaire to see if you actually do have some symptoms that you aren't aware are considered symptoms of these infections.

If nothing else, go through treatments so you can do everything you can to assure a healthy baby, then once pregnant, be sure to either have researched enough to guide your doctors on what to do (testing and treatment if needed), or see a LLMD for your care while you are pregnant. You still have options.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

YepLilly
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 2/7/2018 1:37 PM (GMT -6)   
Thank you again! I really needed to read that.

It's just hard to not lose hope. I wish a was younger but I'm past my mid-30s now, so I don't know if I'll be able to go through all the treatments on time.

How will I know if the treatment worked? At what point can I get comfortable again with trying to conceive a baby? Is this based on the blood markers? It'll be hard to go by symptoms in my case.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 2/7/2018 1:42 PM (GMT -6)   
Did you do that questionnaire? I keep asking, because it would be helpful if we knew that you had seen a good self evaluation like that before we suggest more. As I said, there are actually quite a few people that don't realize that they really do have symptoms of these infections. I know I'm being a pest about it, sorry!!!

I'd say that at the very least, I would suggest you be evaluated by a LLMD that is used to dealing with cases like yours. No other type of doctor would understand the risks and the "in's and out's" of being pregnant with these infections like a LLMD - although they are not perfect either, and I would definitely encourage you to keep doing your own research to be sure that you are on the right track.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

YepLilly
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 2/7/2018 1:58 PM (GMT -6)   
No, you're right about the questionnaire. I just went ahead and took it.

I've done so much research through the years about Hashimoto's, EBV, and Infertility that I'm exhausted lol. But guess I'll have to start the Lyme research now. I do accept that I'm stubbornly in denial about all of this.

Back to the test, I got this:

Final Score: 20
Final Score: Under 21
If you scored under 21, you are not likely to have a tick-borne disorder.

My highest numbers were in these areas:
- Moderate weight gain and hair loss (which got better after starting thyroid treatment)
- Positive Lyme CDC test.
- Auto-immune disease (Hashimoto's)

I have had plenty of fire ant bites, among others (I'm in Florida after all). Maybe one of those was actually a tick bite?

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 2/7/2018 2:15 PM (GMT -6)   
Ants have been implicated in passing these infections along, although I can't comment about if you got it from an ant bite, of course.

Well, I'm sure glad that your questionnaire score is so low!! That's good news in that you aren't battling symptoms while you are trying to figure this out! But, it makes this a little harder too. As you know, if you were showing symptoms, that means an active infection.

Did you have a Western Blot done? That may give more clues.

I wish I could be of more help, but you will have to dig in to your research to find your answers most likely.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

YepLilly
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 2/7/2018 2:43 PM (GMT -6)   
You have been immensely helpful so far and I will continue with the research. You've not only provided a lot of useful information but you've made me feel I'm not alone. Thank you also for your empathy regarding the fertility issues - that's been a very long road in its own, so I feel emotionally depleted and not sure if I'm strong enough to continue. I have a tiny bit of hope again.

I'll try taking the questionnaire again when I'm a bit more calm. I have symptoms, it seems they're just not many of the ones in the list.

Western Blot, is that the one with all the bands? If so, yes. I have 6 bands on the 10-band one and 2 bands on the 3-band one. So by all means I'm CDC positive, no way around it.

Sorry if I sound out of it, I swear I'm not like this! It's just that I got these results yesterday and I'm trying to make sense of it all.

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2550
   Posted 2/7/2018 2:51 PM (GMT -6)   
Also, can you imagine how many people are actually positive on test with no symptoms? I think it's a lot. It may be that your immune system has taken care of it - there is no way of knowing if it is active or not. My husband has band 23 & 41 IGM and has no symptoms at all.

Since you don't have symptoms, it will be hard to know if treatment is working. But there's the chance that your hashimoto's may resolve.

YepLilly
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 2/7/2018 3:36 PM (GMT -6)   
Thanks k07!

I'm going to keep track of my Thyroid and EBV numbers as I treat the Lyme. I wonder how they will react to the treatment. Should be interesting to see.

The silver lining is that IF (big IF given my history) I become pregnant, I now know I will need to follow a treatment with antibiotics during the pregnancy.

Not sure if it helps or not, but I'm also going to eliminate gluten, diary, sugar, etc. I've tried in the past but not consistently. I'm going in 100% now.

I also want to see if I have any herx reaction to the Doxycycline.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2040
   Posted 2/7/2018 6:35 PM (GMT -6)   
Bartonella has significant effects on the reproductive system. Buhner refers to a documented case in his bartonella book. Most scientific research has been on animals. It affects their reproductive systems too. Since you are wanting children, I would encourage you to find a really good LLMD who is well experienced with coinfections like bartonella as well as sexual and transplacental transmission of these infections. You don't want to pass this on to your children.

YepLilly
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 2/8/2018 5:02 PM (GMT -6)   
WalkingbyFaith,

Thanks for your input. I'm trying to find a good LLMD but they are limited here in Florida. I'm thinking about staying with my functional doctor who ordered the Lyme tests and focuses on reproduction and pregnancy as well. Not sure yet how I'm going to proceed.

How do you determine that the Bartonella is gone and you're safe (in terms on getting pregnant)? Is this based on seeing a negative in the antibodies test?

Jasperilla
Regular Member


Date Joined Jan 2015
Total Posts : 229
   Posted 2/8/2018 5:13 PM (GMT -6)   
I just want to say that I think you're ahead of the game with knowing you have Lyme and thinking about the potential risks / consequences of getting pregnant.

I didn't know I had Lyme when I got pregnant, and I passed Lyme to all 3 of my children. I can't imagine not having them, but seeing them suffer is very hard emotionally, as is dealing with all of the issues they face. We are constantly dealing with medical issues, which is not only very costly, but also very draining on me physically.

I also lost a pregnancy at 19 weeks, and at the time they said they couldn't find a reason, but I now believe it was probably Lyme-related.

With that said, if there are doctors who can help you have a successful pregnancy where it's not passed on to your kids, that's great! Another thing is I think SO MANY people have Lyme and it's so endemic that even if your kids aren't born with it, there are many opportunities for them to get it: at the park, from a pet, hiking, camping, a mosquito bite or other bug bite, sexual conduct later in life, etc., etc. I think knowing of the risk of infection is huge and making sure their lifestyle and health is optimal will go a long way towards helping them not suffer from these infections.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 2/8/2018 10:54 PM (GMT -6)   
Traveler said...
Hi YepLilly!
Since you don't have symptoms, we would normally say that it may not be necessary to treat - but since you are/want to be (?) pregnant, that definitely throws a monkey wrench into things.


Traveler, wouldn't having thyroid problems be a symptom though?

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 2/8/2018 11:01 PM (GMT -6)   
Jasperilla said...
I just want to say that I think you're ahead of the game with knowing you have Lyme and thinking about the potential risks / consequences of getting pregnant.

I didn't know I had Lyme when I got pregnant, and I passed Lyme to all 3 of my children. I can't imagine not having them, but seeing them suffer is very hard emotionally, as is dealing with all of the issues they face. We are constantly dealing with medical issues, which is not only very costly, but also very draining on me physically.


^ This. I also didn't know I have it, as I "seemed" healthy at the time (minor symptoms that weren't overly concerning). I also passed on to my three kids, and they have all been extremely ill with it at one point or another.

We also are constantly dealing with medical issues, which are definitely costly and draining on me physically - but worse, emotionally and mentally too (which I am sure Jasperilla can relate to too).
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 2/8/2018 11:02 PM (GMT -6)   
I am truly sorry that you have been suffering from infertility struggles. I am also very sorry to hear that you have lyme/babesia/bartonella too.
Since you are wanting to get pregnant and have thyroid issues, I'd definitely look into treating these and see how it goes for you.

I truly wish you the best in your journey and research. Many {{{HUGS}}} sent your way.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

YepLilly
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 2/9/2018 9:12 AM (GMT -6)   
Jasperilla and 1000Daisies,

Thank you for your replies and for sharing your experiences with me. This board has been a very welcoming place so far. The cloud of doom is slowly moving away and you guys are helping me think clearly about all this.

Jasperilla
Regular Member


Date Joined Jan 2015
Total Posts : 229
   Posted 2/9/2018 12:48 PM (GMT -6)   
Yes, don't let it get you too down!

Another thing I was thinking is that how I didn't find out I had Lyme until 2015. My oldest was 8 and my twins were 4. My oldest had been having problems for a long time, but they were very much like ADHD, and had I not been diagnosed with Lyme, she likely would have ended up with an ADHD diagnosis and on some kind of meds that probably wouldn't have helped much. Instead, we did treatment and changed her diet, and she's like a different child. She still has issues, mind you, but they're not as severe as they were, and we know what we're dealing with.

Also, one of my twins has had rage / anger issues for years, and had I not known the kids had Lyme, she would likely have gotten a diagnosis of ODD or something similar at some point, while we struggled with her behavior.

Instead, my LLND worked with me on trying different things, treating Bart, treating Lyme and finally, she tested her for yeast overgrowth. She took 6 weeks of medicine and is also like a different child. She's still fiery, but not like she was.

My point is, how many kids out there are diagnosed with ADHD, ODD and other disorders, when they really have Lyme or some other infection? Those kids will never get properly diagnosed and never get properly treated. My having this illness and knowing about it and what it can do has enabled me to dig deeper with regards to my kids' health (not to mention my own). And I'm so grateful for that. smile
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