New to Lyme Disease

Sorry in advance for the lengthy post..this is my first time. if anything please read the questions at the very end. plz!:) Where do I begin?
I have recently been diagnosed with having Chronic Lyme Disease, possibly having congenital Lyme Disease. I am 26 but ever since I was about 5 I have had symptoms. Some have come and go, gotten worse/better, over the years. My family have always been known as "sickly" without actually looking sick. So its been very frustrating all these years going in for different symptoms and being seen as completely healthy person. After being diagnosed in 2008 with PCOS i felt a sense of relief, maybe this is why I feel the way i do! but i do not look like the typical woman with PCOS nor do i have any insulin resistance. I have high testosterone and cysts thats it. Now being diagnosed with Lyme, i feel that sense of relief like finally here it is, THIS is it! but is it? do any of you feel this way? Its hard considering my basic lab test does not confirm that I have Lyme, but i am being treated by a nurse practitioner, who specializes in Lyme and integrated medicine. She feels because my immune system is so low, and extremely high levels of inflammation, positive for epstein barr and hhv6. I also have a high elevation of something else that could be caused by Chronic Babesiosa which i am waiting the lab result on that. based on those results and symptoms shes started treatment. i start IV vitamin C on the 21.
I started heavy does of baxin and plaguenil about two weeks ago, but was told to stop cuz i started to have a rash and heart palpitations and shortness of breath, and almost passed out after standing 2 times. I have to wait until Monday to see how I feel, but haven't been told what the next step could be.
Anyways, I need someone whose been on this road before! As with most ppl, my friends and family don't get it, and i'm sure at least half of them have Lyme as well but are content in the way they feel, they can handle it. And to tell you the truth, i probably would be the same way if it wasn't for the fact I am trying for baby number 2.
So i guess with the lil back history here are my questions...
1.) Normal to second guess this diagnoses? what are the chances this is it? I feel like i have so many of the symptoms, but i'm def not as bad as other ppl.
2.) How can you tell the different between a herx reaction and side effect from antibiotic?
3.) Has anyone else with Chronic lyme, also have fertility problems?
4.) since starting meds, i feel even more fatigue then ever, and heart palpitations have started again. normal?
5.) what treatments have worked for you? books that are informative? i know i should ask my Doctor but i just can't wait anymore, and of course i am going to ask her these questions, maybe not in such an erratic sort of way; but i just need to have other ppl to relate to with right now and i don't have that.
i think thats it, thank you for those of you that have read this! I know it is lengthy, but feels like ihave so much in my head right now. its consuming my life! and i think what gets me the most, is not allowing myself to feel i have an illness, a disease. to me, my life could be so much worse and i could have something so much more serious. i think thats another thing, do i just wait and see what happens, i've felt this way my whole life, im getting used to it.

Hi Melcatdew!
Welcome to our little community! I was first infected with Rocky Mountain Spotted Fever when I was 7 (now 49), so yes, you can heal!! I only started getting effective treatment in 2010, and yet I'm doing soo much better!!

As Sam has said, it definitely sounds like you have already confirmed that it's Lyme that you are dealing with! Although you could also have several co-infections as well. If you haven't yet, I too would highly encourage you to read through the "New to Lyme?...Start here!!" thread, as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from!

We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!

Yes, it's very common for those of us that are actually infected to second guess most everything!! LOL! The tests for these infections are very poor with only 40 - 50 % of those infected actually testing positive. There are actually several reasons for this that I can go into if you are interested.

A side effect will usually happen within a few minutes to a couple of hours of taking something, with allergic type reactions - hives, swelling in the throat, ears and more.

A herx can happen within an hour or more - and last up to a day or two even when the treatment has been stopped. A herx is a worsening of symptoms and/or new symptoms starting up. Detoxing well will do wonders for easing the herx. Don't forget to read how to detox in the "New to Lyme?" thread!

There are a lot of women with chronic Lyme that have fertility problems - you are far from being alone with that! Then there are some, like me, who didn't realize we had Lyme when we got pregnant and had a miscarriage due to Lyme alone.

Each person will require a different treatment in some way, there is no one-size-fits-most treatment for these infections. They play off the weaknesses that are in our bodies and go from there. These are incredibly complex infections as well.

If you are curious about how some are doing on different types of treatments (protocols), I would suggest that you spend a bit of time reading some of the threads, paying close attention to the 'signature line' of a lot of members posts, as lots of times they will list what they are using. Like in mine, you will see that I have used Chinese Medicine/Acupuncture/Herbs to heal. Then you can feel free to ask questions of the different members to help you narrow down which protocol you would be most interested in using.

What ever you do, don't get used to feeling this way!! There is healing out there for you!! We are here to help you sort through all of the information out there and to answer just as many of your questions as we can!

There is one thing that's for sure - you are not alone!!

Hello, like you, I have had symptoms since childhood, I think. I've had stiffness and mild pain and fatigue since about 10 yrs. of age. Then, in 2008, I had some tingling and numbness in my feet and more pain and fatigue, but it lessened over time. Finally, after my pregnancy in 2011, I became extremely ill. So, I do believe that it's possible to live a fairly normal life w/ mild symptoms for MANY years, but to overtime get sicker and sicker or have an incident that brings on an active infection (such as pregnancy).

I'll answer your questions in order:

1) It is very normal to second guess it, for many reasons: 1) the controversy of Lyme 2) the inaccuracy of blood tests (false negatives) 3)the symptoms wax and wane 4)many of us have had many other diagnosis that end up being incorrect

2) If the symptoms get suddenly worse after starting abx. and are NOT a common abx. side-effect, then you know it's herxing. For example, are shortness of breath, heart palps.and passing out side effect of those abx? Probably not. Are those symptoms common with Lyme and/or associated co-infections such as Babeisa,yes. So, probably herxing. I have POTS caused by Lyme and when I'm herxing bad, it flares up with tachycardia, shortness of breath, dizziness.
The best thing to do is to start treatment VERY slowly. The herxing can be very severe and dangerous if done too quickly. Start at a low dose of one abx., slowly increase it, and assess how you're doing. Then, add the next one in.
Make sure to be detoxing thoroughly! As the bacteria dies off, it releases toxins which is what causes the herxing. More info. about that is on the "new to lyme" thread, and we can all provide suggestions.

3) Infertility, YES! I have 2 children. I got pregnant w/ my son (7 yrs. old) right away. Then, I went through 3 yrs. of infertility including 3 failed IVFs before becoming pregnant naturally w/ my daughter (now 18 months old). The Drs. never did figure out why I had the infertility. Now, I know it was due to Lyme Disease. My LLMD said that Lyme Disease can cause infertility.

4) Yes, it's normal. It's herxing. Your body is fighting hard to kill the infection. Rest as much as possible! Don't push yourself. That will only worsen your symptoms and make it hard to fight the infection.

5)What works for us varies significantly-most LLMDs (lyme literate MDs) use a combination of abx., herbals, and supplements to help healing. It's a long, slow process, but most do get better. It takes trial and error and a combination therapy for most. Most therapy includes liver support supplements, detoxing supplements, etc. It sounds like the NP you're seeing has treated lyme before. Find out if she has had ILADS training. It may be beneficial for you to find a LLMD, but you will know with time.

Don't dimiss this illness. Lyme Disease is VERY serious. It can be extremely debilitating and, I don't want to scare you, but it can be fatal if left untreated for a long time. It can get dangerous. Treatment is necessary. You are very fortunate to have found a good NP that caught it before it became so debilitating and dangerous for you! You will heal and find a life that you didn't know was possible :o)!