Totally Discouraged & Worried :(

For the last 9 months I have been taking medication for Lyme. NOTHING has changed. I haven't gotten better and I haven't gotten worse, I'm just exactly the same. I feel like I've been taking sugar pills this whole time.

I spent a year (before diagnosis) with tons of crazy physical symptoms. I had every medical test possible and saw every doctor. Every test came back completely normal and every doctor told me I was fine.

I knew I had symptoms of Lyme, and finally decided to get tested on my own...and came back CDC & Igenex positive. I then saw a LLMD who said yes, you absolutely have Lyme and Bartonella. I felt so relieved because it seemed to explain all the symptoms I was having. But now, with no symptom improvement, and no herxes, I'm questioning everything.

Obviously I know I have Lyme, I have an incredibly positive test result (18++, 31+, 34+, 39+, 41+++, 58+, 66+). But why is nothing happening? It seems like my medication isn't touching me, because I don't react positively or negatively to it.

I just started Bart treatment the other day (half dose for the first 2 weeks), and I was expecting to have some major herx reaction right away...still nothing. I'm just starting to get that feeling again of "what is wrong with me?". I'm even asking myself if I have Lyme (I don't know why I'm doing that when I can stare at my test results which will tell me I do).

Has anybody else gone through this? Does anybody have any words of wisdom? It's also very difficult for me to accept the Bart diagnosis because that was a clinical diagnosis. My LLMD has been treating this for 30 years, he's very experienced and I know he knows his stuff, so I should just trust him in his clinical diagnosis of Bart. He is extremely confident in it. If I had Bart, it would explain a lot of my symptoms, but it's still just so hard...

Anyways, what I'm really looking for are similar experiences and encouragement...I don't think I can handle anything that makes me question my illness :(

This post is such a blessing. I have been going through the EXACT same thing! I've been in treatment for 5 months and have noticed NO improvement.

I get worried when I see others post how the meds or herbals are helping. I feel Nothing. Once in awhile my anxiety gets worse, but that's about it! And I know my LLMD is giving me good stuff. I feel like I'm eating smarties candy, lol.

I too question my diagnosis. I'm not even considered poistive! It's "indeterminate". That drives me nuts. I'm just so tired and sick, and weak. I miss my old life. I wish I could feel some improvement so that I know that I'm on the right path.

I'm considering doing the PICC soon. But I'm worried that it won't help either and just cost loads of money. I'm tired of swallowing all these blasted pills and not getting better.

Thanks for this post. I really needed to read this today. Sending you both a hug. We just need to hang in there!

Xoxoxo
Utah

She's treating me for babesia now. It came back negative, but we're giving it a whirl. I'm taking mepron with biaxin. Started mepron 3 weeks ago and added biaxin this week. Hoping to see something happen in the next few weeks.

So far, I've tried (with no positive results....)

Mino & malarone
Doxy & flagyl (terrible herx, or bad side effect?)
Mino & rifampin & tindamax

None of these improved any of my symptoms!

Will228 - not necessarily. I have met people who are on strict diets...and have progressed very slowly, and have been treating for a few years. I've also talked to people who healed and didn't change their diet at all. If it were just that simple.

Of course we want to eat healthy to help our bodies heal...but there's a lot of other 'stuff' going on besides the diet.

yes living-free - For those of us who have a huge list of symptoms...some of the minor ones go, and we don't even notice. That's how it's been for me.
I've also added some since treatment started unfortunately.

But, especially if you have a few that are really awful...and they linger...but some more minor ones go, it's hard to tell that you're 'feeling better'.

I've been treating for 8 months now...but if you subtract the days off I've taken (two-three here and there, along with a week recently) - it really is only 7 months....hehe.

My sleep has improved, my new symptom of shoulder pain has improved (started two months into treatment), my foot pain has improved - most days it's gone, my rib pain is gone.
But, I still feel like I haven't made great gains...because my worst symptoms are still with me - my nervous system vibrations, my chills/shivers, my nerve pain- radiculopathy.

So, Runnergirl - have you looked at all your original symptoms...and have any of the minor ones (none are really minor, but ones that aren't your worst) subsided at all?

There are many reasons why people don't heal quickly - a couple of the most common reasons that I have seen can be because they haven't found the right combination of abx, or they need to treat one of the other infections/conditions that they have first.

I agree with Girlie in that while diet is an important part of healing, a diet that isn't too bad wont' stop the healing - won't help it much, but won't stop it. I healed from a 40+ yr infection in only 12 months and although I had a healthy diet, I certainly didn't follow a Lyme or Candida diet during that time.

You may have other conditions that may need to be treated. I assume that most of us go through sooo much testing trying to find out what's wrong with us pre Lyme diagnosis. Take a look at your labs and other paperwork that you may have and see if there are any clues there.

This site has so much valuable information when we can't seem to make much progress. It's from a rather famous LLMD, Dr. H. I would encourage you to spend some time looking it over to see if something there makes sense for you:
http://www.cangetbetter.com/

RunnerGirl, I would ask your LLMD if you might have another coinfection you're missing, like babesia. Utah only recently was clinically diagnosed with babesia. That might be the key for both of you!

jrpsf, I'm not taking anything else at the moment that you list (I am on other vitamins, etc to boost the immune system).

The thing is, I don't even feel crappy from herxing. As far as I know, I'm not even experiencing that.

There are subtle improvements. I've gained weight so I am not back at a healthy weight (I had lost a ton and was very underweight before). I also used to experience major nausea almost everyday. That has been improving and doesn't happen nearly as often.

I experienced a herx ONCE and it was with the first antibiotic I ever took. I was extremely sick for a few days. After that though, each time I've switched to a new ABX, no reaction...

Did you consider getting a TGF B1 test and C3a C4a test to test your levels?

Most Illinois insurances will cover these tests even from an out network LLMD as long as you go to lab like Quest in Illinois.

My LLMD uses both those tests to monitor progress as levels go down ( or persist ) from certain treatments. Maybe it would help alleviate some concerns to see progress?

I would agree that it is a mix and match with Bartonella as far as meds go. Some work for some people others don't. Just have to try them to see.

Is it possible your discouragement and worrying might be in herx? Man, I got a lot of similar mental symptoms exactly the same when I first started Bart meds. It's tough.

I hope you find some answers.

Cappuccinocuris.....

What are your symptoms? Which ones improved? What abx combo were you on?

RunnerGirl,
I asked what I did because at my second LLMD appt if they didn't address biofilms with those products I was going to look for another MD. I had done enough poking around the net to understand the importance.
http://www.betterhealthguy.com/ilads-2013
It's from the 2013 ILAIDS conference.
Go down to the bottom of the page and scroll up to the second from the bottom Doctor to:
Norton L. Fishman MD spoke on "Biofilms and Coagulopathies".

What he says in laymans terms....biofilms keep the abx from getting to and killing the Lyme.

There is also a Huffington post article and many more that discuss the same thing.

Do a search on here for discussions on biofilms.