What to expect after Lyme treatment?

I am just beginning my first Lyme treatment and I don't know how to set my expectations for the future. My treatment is 30 days of doxy and cefdinir most likely followed by or in conjunction with some herbs at some point. We don't know exactly how long I've had Lyme but my doctor told me that the tests revealed that it has been in my system for a while. Its looking like I've had it for 5 or 6 years -- thats when I got a bite with a bull seye rash, and thats about the time I remember starting to feel "off" all the time.

I know most people are one antibiotics for more than 30 days so maybe my treatment will need to be extended. The jury is still out on co-infections, I tested negative but have symptoms of some so I need to talk to my doctor about that and possibly pursue additional treatments.

I know theres no way anyone can exactly predict how I'll be feeling once this treatment is over and so I shouldn't ask but I just want to know how to set my expectations. My doctor thinks I'll be feeling a lot better and my family is very optimistic but me, not so much. I'm no pessimist but I'm definitely a realist and its hard for me to read all of these stories and posts from people who are still struggling with Lyme years after diagnosis and then expect that I'll be feeling good after my first treatment. I know Lyme stays in one's system forever and remission is the best outcome. I also know Lyme most of the time Lyme is a long term battle and I have accepted that. However I do expect my symptoms to go away (for the most part) after treatment and I want to know if I'm wrong in expecting that? I haven't been feeling 100% in years so I don't even expect to get back there anymore, but 90% would be nice. I'm 19 and I've had chronic illness since I was in the third grade, so in no way am I used to feeling great... I just don't want to feel bad anymore. It makes me so sad to read posts and other articles about people who are still really struggling with symptoms after many treatment courses and many years. When I was diagnosed I thought "Finally! An explanation for all of my pain" and I thought that once the problem was identified we could just treat it and I would finally not feel so bad everyday. But now I fear that won't be the case, sure the problem was identified but here I had my hopes up for finally being moderately healthy and feeling good and now I see I may never get there. It just has me down. My family still has hope for the day I feel good and am not completely burdened by illness but I can't keep getting my hopes up if that day will never come. I know I need to stay positive and I really am doing my best to do that. And I know that I can and will cope with whatever reality I face, but I just want to know how to set my expectations in order to help me cope with that reality. I just don't want to keep getting my hopes up only to be disappointed. Will my symptoms be mostly gone (at least improved) once I have been treated? Will I have to constantly be so self aware to make sure I catch my symptoms early? Will I herx throughout my life regardless of treatment? Will I ever be able to feel good again?

You sound a bit depressed and that is totally expected given the years of sickness that you have been dealing with. Depression is also a symptom of these infections. I agree. It's scary to read posts of people that have been sick for a long time.

There is a huge mental component to getting well with Lyme and Co. The most famous Dr. Horowitz even said on a podcast the other day, "Usually the last 10 percent of healing involved a emotional/spiritual shift". Might I suggest you get a "family systems" therapist. It is a specific therapy designed to unravel all your the inner voices that are guiding you unconsciously. If therapy is too expensive, I suggest reading the book "The Inner Matrix" by Joey Klein. He will teach you that you can do something about how you reaction to the posts, which are affecting the quality of your life. It's an easy, small book to read.

Joey Klein = You need to unravel the layers within and figure out how to handle your emotions in a way that is in line with your vision of how you want you life to be. When you are worrying about the future you can't fully be present and feel gratitude for what you have now. I was in the same situation you were in, worried all the time. Worry = stress = illness. Everyone works on their body all the time and never addresses the mind. It too needs nurturing, guidance and love. In Chinese medicine, they never just address the body when people are sick. They always are looking at your chi, your wind, etc.

You are young and your body knows how to heal itself. Trying to stay positive without a road map for success is very difficult. Once you figure out what is holding you back mentally from experiencing the life you want to life, you will find it easier to deal with the feelings that you are are experiencing.

I am 51 and I wish I had read that book when I was your age. My life would have been radically different. Good luck sweetie.

Actually, many find there are patterns to these infections and the symptoms. Journaling will help you find yours, although it may take a while to 'see' the patterns.

Although, a lot of what PeteZa did say is correct - " One day you feel fine and euphoric and the next day you can have 6 different symptoms and feeling sick to your stomach. You wonder what you did wrong. " and the fact is, you did nothing wrong, it's just the way the infections work.

There are patterns going on in our bodies all the time, we just don't recognize many of them, because the different parts of us were working as they should, so we didn't have any reason to notice them. Being sick for so many years, I've learned what the different patterns are for many things in my body, but I still get stumped a lot!

Well, to start, I just signed up to this Forum and have read A LOT! Some of it, in fact a lot of it makes me feel that all my "Nurse" abilities to pick out winners and losers fairly quickly in reference to physicians , I learn well, hee hee.I don't have my Western Blot in front of me but I do remember it was picked up by Fed EX at the specialists office and flew to Stanford to be run there, ( that was half my blood on ice that was flown). When the results came back, Doc explained it very well. It was a bar graph with tons of yellow high-lighter all over, scary!

I had 12 bands, some he said he had never seen show up on the Western Blot ever before and 10 out of 12 of them were clear to the top of the sheet of paper. I had been bitten 03/1994, begged my doc's (Family doc), partner for 28 days of Doxy, which he said NO, we have to get the blood test back first!!! This idiot, oops, Dr. had just told me the ELISHA was 65% false neg and that is the test I had to wait for??? It had been a month since the bite, I had already had a couple of run ins with this guy concerning my children, we were fairly new to this tick-infested town, and the "just-employed" woman had scheduled me on my real doc's day off! My joints had been on fire for a week before hubby found the tick and it was just a plain old female brown dog tick in OK.

By 2003 I had been in a hospital bed in our livingroom, (they don't fit through bedroom doors), in a fetal position for over a year. The pain so bad, if someone walked past me quickly, the breeze they created cause pain as it washed over my skin.

Hubby rented a huge Lincoln Towncar so he could put lots of padding and me in the back to drive to another state to see the specialist. 6 months of IV antibiotics after the orals did nothing except turn spirochetes into cysts. Pain was so severe even before antibiotics I just laid in a blob. Soon I weighed 83 lbs. I was at 110 lb. before illness at 5'6".

I wonder how many of you were put in a psych. unit by a doc you never heard of for a week, he begged me to let him put "truth serum" in my IV to find out what my parents did to me as a child to cause all this pain! This was the year before my hubby found the specialist.

I have tried the herbal route, 1) some flower that blooms on some tree in the top of the canopy of the Amazon rain forest, followed by 2) Venus Fly Trap, the the guy told me I would be cured. Oh, yes the Rife Machine I never saw but I sat there with other folks in a little room for 20 minutes. My hubby with an outrageously high IQ said ENOUGH and built the coil form of the Rife machine. WOW! Herx's much worse in intensity and lasting as lon as 7 days. 50 mg. a day of Methadone can't stop the pain from those bug killing Herx!

S0 from the day I was bitten to now has been 30 years. We found a great Internal Medicine guy by asking of friend of mine who I worked with when I ran a 28 bed PCCU for 8 years and he was our Pulmonary Consult. I knew if he came up with a name, he would have had to do something miraculous! He listens, hits the internet at home, runs slides up the stairs to look at them himself, ( they do have elevators), so far he has me up to 40 mgs. of Methadone a day and he has never given anyone Methadone in his life. It takes 60 mg/day to kick those endorpehs in the rear so they do their job, no drowsiness, no slurred speech, just able to hit my Total Gym and work out hard, as those nasty spirochetes do not seem to like the endorphin bath from all the exercisAre you allowed to tell me the name of the herbs I keep reading about on this forum? I have tons of allergies to pollen, dogs, and mold spores. I cannot tolerate ANY faux sugar, but stay away from white suagr as spirochetes love it.

I take very good care of myself. I have been, as they say, "growing old gracefully" since I was about 16. A good thing now, as our skin is the first line of defense. I also have no wrinkles, yet and had my 62 birthday almost a month ago. Since I said that I will wake up with a PRUNE face, LOL! I really do believe that one must keep their sense of humor when under attack. If you don't have one find it. Read about those precious little ones at St. Jude's when it is pity party time as there are so many others to take care of the sympathy and empathy part.

Back to the bugs, I was + to Babesia, treated with Quinine and killed off. Liver enzymes are perfect,24 hr. US for hormones all w/in N/L Another US, but like I said before, I was near death so it was hard for me to keep up with everything. A year ago I was in PT and I had the best PT guy in OK. He was VERY Lyme literate, had his PH.D. already which is now the law because of all the work they do with the neck and back. He had a plan and each week he did his thing and I had my homework everyday at home. I was so close to walking again and BAM! Insurance cut my throat and we do not have Obama Care, an HNO, just regular insurance. He said words that he never used, hubby had that, "I wish to kill something - usually cender blocks, and I waited until we got in the car to bawl. I will get back there!

Remember, please ! Are you able to tell me which herbs kill these horrid bacteria that I did seem on an electron microscope. They looked like a drunk sperm cell. Some of them even got smacked in the kisser with their own flagella!

Thank you ahead of time.

Welcome lizzy ...some use herbals ..some use bvt .(bee venom kills them ).the doug coil sounds interesting ?
Andrographis ,smilax ,houttynia , teasel ,and others have been helpful...

my rn friend with als .leg drop palsy etc,did abx ,hbot for a year then switched to bvt and h202 iv and after 2 yrs started to feel better ..she says she is normal and works now

my mentor nurse ..had ic ,and many twitching 1 yr abx ,1 yr h202 then 5 now of bvt and works gardens ..she is 70 and had infection for 30+years ...

i am 12 months in have had it for eother 25 yrs or 12 ...i am seeing some light ...though most days if feels like death ..less and less though...

Post Edited (bluelyme) : 11/6/2016 8:29:06 PM (GMT-7)