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Lyme Disease
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Posted 10/1/2013 4:22 AM (GMT 0)
Hello, I am not even sure where to begin...well I will start with 2 years ago this month I was river fishing in the Manistee national forest for a week. Upon my arrival

at home, I noticed a black dot in my thigh and thought it was a scab. Two days later it was still present so I scratched it off which left a slight hole. A week later I had what I now know as the bullseye rash. I knew nothing of lyme disease and dismissed it. The only symptoms I have noted through the next two years are simply swollen lymph nodes and extreme fatigue. I just gave birth to beautiful twin boys 8 weeks ago.

 4 weeks ago my life flipped upside down when I had a horrible never ending panic attack, burning skin, fight or flight mode, lost hair all over my body and head, couldn't eat or sleep. Went to psychiatrist and GP was told postpartum depression and anxiety and I was put on serafem and Seroquel. I am an EMT and have been in the medical field for 7 years this was unlike anything I have ever seen. My husband had to take 3

weeks off work. At last the medication helped and I am feeling much better. A series of blood work was done and I had 2 bands come back positive on my lyme tests ELISA and western blot, not sure what bands. Doc says its not enough for

CDC to acknowledge bla bla bal but she is willing to treat me anyway. Ok neat. im so confused where to start ALSO I am deathly afraid I passed this to my babies in utero and in the one month I breastfed. What should I do for them? Are they

doomed for a lifetime of ill health?? ALSO what do I do as far as my medication and receiving treatment?? if my psychiatric symptoms are due to Lyme will I get worse once I Herx?? should I wait to start treatment until I wean off of my

antidepressants and anti psychotic?? I am so scared im going to mess my brain up. I just want to be a healthy loving mother again, this is so awful...

Posted 10/1/2013 4:59 AM (GMT 0)
I'm usually up late so I will try to give you some help right away. I'm new to this and others more experienced than me will also help. Make sure you read the "new to lyme" area on top of the regular posts. Lots of good info there...You need to see a Lyme Literate Doctor as soon as you can. Most regular Doctors either will not treat Lyme and its co-infections correctly or just don't know how to. A Lyme literate knows the latest and most appropriate treatment plans, and even they disagree slightly. Start a "new post" stating "seeking a LLMD" in whatever City and State you live in and you will hopefully get some responses. We DO NOT give names of Dr's in the open forum. Go into your acct settings on this forum and "activate" your email, some may choose to speak to you through that venue and that's where you will get Dr info....read as much as you can....Hope this at least helps a little...Good Luck..
Posted 10/1/2013 5:02 AM (GMT 0)
Thank you for the reply. I have found 2 LLMD in Michigan I will attempt to see them asap. I am just so lost and my head is spinning with all of this. I guess I am curious if anyone else has similar issues or insight on my babies and what to expect. Is having this infection for 2 years meaning a lifetime battle for me or do I have a shot at recovery ect...ugh im just so scared.
Posted 10/1/2013 5:16 AM (GMT 0)
I know you are scared. I am too. We are not alone either. You are going to read a lot of peoples troubles on here but there is also a bunch of success stories. I have been reading and studying since I joined here in August and there is plenty you can do in the meantime for yourself, such as diet and detoxing your body. No 2 cases of Lyme are alike, some people get sick fast and others it takes years. Your babies will be tested, I'm sure. Stay focused on getting to a LLMD quickly. There is also the possibility that your babies are "just fine". They need you strong and committed to the task at hand. If you think 'success" you will get "success".....Hope this helps...
Posted 10/1/2013 5:22 AM (GMT 0)
It does, thank you so much :-)
Posted 10/1/2013 5:35 AM (GMT 0)
Hello there. I am new here as well. But I did want you let you know that A LOT of people go many years (not from the time they get bit but from the time their chronic symptoms started) and are now recovered. I think you will be just fine once you see an LLMD and get treatment. I know the symptoms are really scary at first. Trust me I had panic attacks too. I went into the ER 6 times! I swore I was dying. Just remind yourself that several others have been there and they made it. You will make it too :) And eventually you will get used to the horrible symptoms and you won't even worry about them anymore, they will be more of a painful disabling annoyance lol.

As for your little ones I'm right there with ya. My symptoms started just a month or so after I stopped breastfeeding and I'm sure I probably got bit before even being pregnant. The thought has crossed my mind about my little girl being infected. I am going to bring it up at my first LLMD appointment and see what the doctor has to say about it. But my baby girl is 9 months old now and is doing great and is completely normal as of now so I hope that puts your mind at ease a bit. Just let me know if you need anything. Feel free to email me if you nees to talk. Everyone here has been so kind and great to me. They are wonderful and I know they will help you too! They have a lot of knowledge to share!
Posted 10/1/2013 12:52 PM (GMT 0)
Hi Emt Mom, I think you need to find a lyme literate md as soon as possible. I had all the pysch symptoms as well and they were improved a lot with antibiotics. It def alleviates the symptoms. You may want to consult with the ob/gyn or pediatrician and the Lyme Literate Medical Dr. regarding breast feeding due to the medications. You can always switch to bottles to be safe. Try just the antibiotics and see if your psych symptoms improve. Mine did immediately. I wish you the best and your babies too. Just stay on the antibiotics; they will help you.

Post Edited (BarnGurl) : 10/1/2013 7:13:29 AM (GMT-6)

Posted 10/1/2013 1:47 PM (GMT 0)
HI! This forum is awesome. I've learned so much in the past 2 weeks from the awesome people on here.

My advice: 1) Do as much research as possible on your own & read through these posts. 2) Do not let any doctor give you steroids unless you are going to lose your life or eyesight, until you find out what is going on. 3) Do not let doctors/nurses or anyone blow off your symptoms. 4) Go with your gut 5) Do not lose faith

We are here for you :)
Posted 10/1/2013 3:49 PM (GMT 0)
I agree.  Please find a LLMD and have your babies checked too.  Our LLMD feels that our daughter was born with congenital lyme (sound, light, touch sensitivities, hypotonia), but I had no idea that I was infected. 

I would caution you about vaccinations. Our daughter's immune system was not capable of handling the 15 month MMR vaccination.  She developed a high fever and then progressively lost gross motor and speech abilities.  This wasn't permanent however, and 5 years of OT/PT and speech therapy brought her back.

My heart goes out to you, but you will find help.

Posted 10/1/2013 5:49 PM (GMT 0)
First, congratulations on your twins! I hope you can find a doctor to help you and your boys. Hopefully they don't have Lyme. Just keep reading on this site to learn the various options you have and to help you understand Lyme disease better. I wish you and your family the best.
Posted 10/1/2013 6:54 PM (GMT 0)
Just wanted to let you know I was in the same boat! I think I got bit early on in pregnancy - I thought it was a spider bite. My pregnancy was somewhat uncomplicated. The only thing that was different was that I had a high heart rate. The delivery and birth were perfect, but then about 2 months into it my body fell apart! I was slapped in the face with something that no one could figure out. After millions of different doctors and specialist I took it upon myself to see an LLMD. I had my blood work sent to Igenex and it didn't come out positive, but I had lots of IND bands on lyme specific bands. That in combination with the 41+ band I was able to get treated. I am 6 months into treatment and I feel about 80% better most days! There is hope!! My LLMD said that sometimes it takes a stressed event on your body to shut your immune system down and bring out the beast. Sad, but true. Oh, btw... my daughter is perfect and actually advanced for her age =)
Posted 10/1/2013 7:29 PM (GMT 0)
sickiam, it's good to hear you found the help you needed to get to the point you're at now. I'm glad you weren't worse for the delivery and it's great that your daughter is doing well. Just watch for changes.

I may have had Lyme when I was pregnant with our first daughter and she was a happy, healthy baby, but she started getting ill around 10. I have no idea if I had it and passed it on or if she got bit. She was diagnosed about 2 years ago after 15 years of problems. Hopefully your girl will continue to thrive.
Posted 10/1/2013 7:33 PM (GMT 0)
Thank you so much everyone, for your encouragement!!! I truly appreciate it and am doing my best to remain hopeful. I have been reading a bit and am just so angry at myself for dismissing the rash, I feel like an idiot. But as many of you have, I too find comfort in reading of others success and pray I will join. Rowingmom, I am a huge advocates of delaying and eliminating most vaccinations with my children so thank you for reinforcing that. Sickiam, I also had an uncomplicated pregnancy aside from tachycardia as well. Perhaps there is a correlation...and it does seem my stress of childbirth, breastfeeding, and exhaustion pushed my body over the edge. I will try to alter my eating and prepare my body to fight :)
Posted 10/1/2013 8:03 PM (GMT 0)
I too was ill during my pregnancies - 29 & 30 years ago - adn I breast fed both of my kids and I didn't know I was infected with all these infections. Although both of my kids had it kind of rough the first few years with allergies and infections (tubes had to be put in son's ears) that always were complicated, I choose to raise them on a farm where we grew all the food we ate and drank.

It wasn't until they were off in college that I finally understood that I had all of these infections, and then I went into an absolute panic about my kids. What had I done to them by not realizing what I had and what I may have passed on to them?

Now we are several years past that, and I've now healed and can calmly look at things. I believe it was the healthy lifestyle that I choose to follow (albeit an extreme way to go about it! LOL!) is what made all the difference for my children. They have their lives and are living them to the fullest and doing very, very well.

So be vigilant, but don't panic about your precious babies. Your exposure to these infections don't necessarily spell doom and gloom for them. Learn about Lyme in children and watch for symptoms so you can get them treatment right away if it shows up.
Posted 10/1/2013 8:15 PM (GMT 0)
Thank you Traveler. May I ask, any insight on lyme and psychiatric issues? I think I may have experienced mania, catatonia, and psychosis during those 3 weeks. Im finding it hard to come across solid information on this. Is it safe to proceed with treatment while on the psych meds, will herxing affect these symptoms and push my head to the point of no return? Or are these simply truly postpartum issues. I am recovering well with the meds so I'm assuming it is...just all scary, scary stuff!!
Posted 10/1/2013 11:16 PM (GMT 0)
Please continue with your protocol! Even though herxing may bring those symptoms back or even intensify them, it should be short lived - only lasting as long as it takes for the toxin load to go back down. This is why we push detoxing as much as we do here. It really keeps the symptoms down to a lower level.

It's hard to find much information on any one thing right now if it pertains to any of the tick-borne infections. There is so much research that still needs to be done!

I experienced paranoia, uncontrollable anger, catatonia, and many other psychoses during my time with these infections and I am happy to tell you that I no longer suffer from any of them. It's a matter of allowing your body to heal - all of it, and giving it the proper support to do the job well.

This is one of the scariest things I've been through in my life! I've had loaded guns put to my head, but that didn't scare me as much as these infections did once I understood what I was battling. They almost took my life at one point. So you should be scared - but not too scared to do the right things! That's where we come in. We are here to help you understand what you are battling, help you find information, and to be here when you need someone who truly understands.

It's all about information - information is power with these diseases, so be sure to ask plenty of questions (& don't stop until you find the answer), and do read about these infections as much as possible. Being very well informed will not only help you heal as well as possible, but will also prepare you if you should need that info because one of your precious children need the info for their own healing.

I've made what I consider an amazing comeback from chronic Lyme (40 years undiagnosed), and although we do have a couple of members that are a lot more ill than I was, we are all healing (although I've already healed) and seeing some light at the end of that tunnel....and it's not another train! :-) So hang in there and learn all you can. Information truly is power with these infections!
Posted 10/1/2013 11:51 PM (GMT 0)
I experienced paranoia, uncontrollable anger, catatonia, and many other psychoses during my time with these infections and I am happy to tell you that I no longer suffer from any of them. It's a matter of allowing your body to heal - all of it, and giving it the proper support to do the job well.

Thanks for this post Traveler. Ive also experienced so many of these along with cognitive dysfunction and memory loss. One night I just cried hysterically to my husband that I needed help. There is def a mental component to the disease and I dont think a lot of people understand that. Great post and you describe things very well. I like to hear others discuss it bc at times Ive thought I was losing my marbles. :)
Posted 10/2/2013 2:50 PM (GMT 0)
Thank you for your kind words, Barngurl.

I completely understand!! I was scared out of my wits when I was going through all of that, which is exactly why I'm a Mod and still posting - I don't want anyone else to go through all of that wondering if they will survive! Once my working memory left, I really thought that was the end of "me". I was scared, really scared. But I am now proof that it can come back (although I have found that not every one of the memories have returned....yet) and a person can do quite well once they have been through treatment.

One day, all of this will be out in the open and people won't have to come to a forum to get the information and the understanding that they deserve.
Posted 10/2/2013 4:20 PM (GMT 0)
Great words Traveler, thank you.
Posted 10/2/2013 6:15 PM (GMT 0)
Emtmom, girl how are you doing today..? Are you getting treatment yet ..?

Traveler thank you. It brings tears to my eyes reading your post.
Posted 10/2/2013 6:17 PM (GMT 0)
OH no! I hope they are happy tears!!!
Posted 10/2/2013 6:18 PM (GMT 0)
http://topdocumentaryfilms.com/under-our-skin/

EmtMom documentary to watch Under Our Skin
Posted 10/2/2013 7:55 PM (GMT 0)
Ehh I'm doing ok. I have left a message with a LLMD but no call back yet. They have strange hours!! I have been dizzy, pain in the back of my head with cognitive difficulty as well but a lot of energy so I'm happy about that. Not sure if all those issues are from the lyme or from recovering from my mental breakdown and or meds. I am waiting for the boys pediatrician to call me back ugh I wish everybody was a anxious to handle this as I am!! Don't they know time is of the essence?! :)
Posted 10/2/2013 7:57 PM (GMT 0)
I'm wondering if I should have my GP start me on abx while I wait to get to the LLMD???????
Posted 10/2/2013 8:09 PM (GMT 0)
That's hard to answer actually - some LLMD's want to do a bunch of tests before you start abx therapy, and if abx are started and then testing is desired, a person needs to be off abx several weeks before testing is even worth considering.

If you can get a hold of your LLMD's office and ask if testing will be done, or if you can go ahead a start on abx from your regular MD - it would be the best.

Otherwise, if you can get your doc to prescribe 400 - 600 mgs a day of Doxycycline (200 mgs taken either two or three times a day) that would be the place to start - unless you are allergic to it. Any thing lower would only stop the bacteria from replicating, not kill them.
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