Accepting my illness

I am angry, I am sad, I am so darn frustrated but I am starting to accept the situation realizing I cannot change the moment. I am 31 years-old and have had lyme and babesiosis since the age of 5 but only diagnosed 1 1/2 years ago. When I was 5 after having 9 tics taken off me within a few months and developing the classic lyme symptoms my parents pushed the doctors to test me for lyme and while they refused at first they eventually grudgingly tested me which came back negative. Of course they did not tell my parents that a negative test result means absolutely nothing.

My story is the same as most. My symptoms ebbed and flowed and the doctor said it was just "growing pains." Wow! How ridiculous that now sounds! The symptoms persisted and when I was 17 I was hospitalized for 3 days having 105 fever and intense digestive problems. I was diagnosed with ulcerative colitis and put on meds for this condition. I still do not know if this was caused somehow from the lyme or not and why I got so violently ill all of a sudden. Throughout my life in addition to the physical issues it always took me much longer to absorb information, I developed ocd as a child, anxiety, depression, and I was always physically much weaker then my peers. I internalized these issues and accepted that I had a weak fragile sickly body and mind.

Somehow, the symptoms were "mild" enough to allow me to get through college and law school although I had significant dips along the way. 2 years ago the symptoms that have plagued me since the age 5 became extremely worse and it was becoming impossible to function in my highly stressful job. With the guidance of an amazing counselor I decided this cannot be normal and there most be something going on as I would think, since I am now an adult and have stopped growing, the "growing pains" should have stopped as well. Again I was told I was fine. My therapist suggested that I may have lyme disease and led me to an llmd who diagnosed me with lyme and babesiosis (with positive lyme tests from igenex). Wow I finally had a diagnosis, but little did I realize my struggle was only beginning.

After 1 1/2 years on different courses of antibiotics and other meds I am finally starting to have periods (7-10 days at a time) that I feel great! Some days where I literally have never felt better (since I have had this since a child I do not know what it feels like to feel normal). This gives me hope but makes it even harder when the symptoms flare up and I crash again which happened 2 weeks ago. 2 months ago the doc started treating the babesiosis intensely and if i thought the herxing from lyme was bad this was on a different level. For the first time I had to leave my job which I did not want to do and have been on medical leave for the last 2 months. I am supposed to return in October but I do not know if i will be ready and am worried and scared and do not know what to do. The last 2 weeks have been extremely rough and i was starting to doubt the diagnosis and treatment. My dr is an ilads member and follows their protocol and has been treating lyme and co-infections for 20 years. But in the back of my head i hear... "what if the other drs are right and it is an autoimmune thing... or what if you really need iv antibiotics which current doc does not use"...). These last two weeks I have been stressing out about whether i should break the bank in getting another opinion from one of these nationally known llmd's that charge insane prices.

For now anyway my mind is starting to be at ease. I came to a small epiphany earlier today which is what led me to post for the first time. I am doing everything I can do to be well. I am following the doctors instructions to the tee, have cut out sugar and gluten, taking tons of vitamins, resting, and doing stretching and exercise when i am able, and use a infared sauna 3-4x per week. That is what i have the ability to do. Beyond this I do not have control and it is somewhat comforting. I do not know what will be in the next moment but I know that right now I am alive and doing everything I can to heal. I do not need to worry about when I will be better, when i will be able to return to work, and analyzing every turn my symptoms take. I am sick with an illness that there is not much known about and is extremely difficult to cure. I am doing the best I can and beyond that it is out of my hands. I will meet any challenges that arise at that time and do not have to worry about them now. I will go back to work when I go back and that is ok. I am starting to accept all the unknowns that go along with battling lyme. Sorry for rambling. I just needed to get this out even if no one else reads this it felt good to write how i am feeling.

Hi! I'm sorry you have suffered so long. I just found I have lyme disease and really only suffered for over a year, but there were other things about 3 years back that I wonder if they were signs too. I am mostly worried because my doc confirmed I had an old infection and now a recent one so I worry because I have 3 children that appear normal, but have little issues. My oldest has problems talking to people. Everyone just says he is really shy. My middle child is so slow doing anything. He gets distracted easily and just wants to have fun and not do anything that doesn't interest him. My youngest is 2 and doesn't speak. He babbles and has maybe 5 words, but that's it. So I am always concerned, but these could just be "normal" children things. I am getting my youngest tested since I could have had lyme when I was pregnant with him definitely. If he is positive, I will check the other 2 as well. Anyway, I am glad you are accepting everything and hope you get some healing soon. I am in my 3rd week of treatment and doing okay. I was pretty beat up for the first 2 weeks and now I have some days that are good and some that are bad.

Hi and welcome to the forum! I'm glad you found us. I'm sorry to hear how long you've been dealing with Lyme without knowing you had it for so long. Keep your new attitude going. It will help you in the long run.

Have you read through the "New to Lyme" thread at the top of the page? If not, I'd suggest you do since it has a wealth of information and will teach you things you can do on your own to help you with the battle.

Rambling is allowed here, so do it all you need to. I wish you the best!

Hi Hopefornow!
Welcome to our community!! I'm so glad you chose to join us!! I too have had these infections since I was a small child, and although I healed once, I am now reinfected & treating again.

You are so right in the need to accept that we are ill!! I see so many people struggle with this and I place a lot of blame on the lack of support & understanding we get as Lyme patients. Any other disease that impaired the patients as much as Lyme and company can - there are people everywhere willing to be understanding and compassionate. One day this will all change though!

I would encourage you to read through our "New to Lyme? Start here!" thread that sits at the top of the forum - it has some more detoxing suggestions that you can incorporate into your own routines.

You've come to a great place to share your thoughts and get as well as give support! It's a great feeling when you know that you may have just helped someone through a rough spot!!

Accepting your illness is the second biggest step in the road to recovery in my opinion. Many people spend too much time in denial and delay the recovery. Once you accept your illness then comes the hardest part and that is recovery.

I am glad to see you on the road to recovery. If you see me on this road on my knees and not being able to take another step forward, please help me up.... as I will do the same for you when I see you laying there.

Thank you for posting. You've accomplished so much while dealing with this disease. I sincerely admire you. I love your conclusion. It resonates with me. I worry and analyze too often over things I have no control. I found a bit more peace within myself reading what you wrote.
I hope you continue to post. This is a great support.

Wow, I am overcome with gratitude at all the responses this post has received! I did not really think anyone would even read my long post. It is giving me great encouragement and joy especially seeing that what I wrote has helped others. That feels so good! It is easy to feel useless when out of work but healing from this is much more strenuous than any job or career and those fighting this battle are truly heroes whether the world knows it or not. I have thought about posting for months and have come close but didn't think I could add anything useful/helpful. I am so glad I did post and grateful for the wonderful encouraging responses.

Even those who truly support us but who have not personally dealt with this illness cannot fully relate so it is so nice speaking with those that do. A good intentioned friend at wrk who is very sympathetic to what I am going through would say things like "I know how it feels to be tired... And out of it." No u really have no idea what this feels like!

Traveler: thank u for the great information. That article is indeed interesting and eye opening for me!

Thank u everyone! Keep fighting!

LymeBabe, thanks for that info. I will def look into that and ask my llmd to test me if he has not already.

He will not do mold either... does anyone know how I can get tested for this?

Awesome, thanks Traveler!