Those with Long term Lyme disease

Mostly, it's the total period of being sick, cause many of us have been left untreated for a very long time.

I've been sick for 20 years, have been in treatment the last 20 months of those 20 years.

 

Healing98,

Before I started treatment, I already had a long list of complaints (fatigue and exhaustion and headaches, palpitations and rapid heartbeat have been 20 year problems, then about 2 to 3 years later came the joint and bone pain, memory problems, concentration problems, problems in making sentences and finding words, numb feeling in parts of the body, brain freezes. Then about 2 years later stiff and painful muscles, eye problems, digestive problems, then a few years later they discovered food allergies/intolerances, leaky gut, heavy metal poisoning, total intestinal dysbiosis. I had irregular menstruation, some twitching.

Treatment has intensified some of these symptoms: the exhaustion has never been worse than now, joint and muscle pain, and I have more migraine and clusterheadaches (which were most of the time 'simple' headaches before). So I can say that the pain has become more severe and more persistent (longer episodes). Also, before, I could take painmeds (I always tried to avoid that as much as possible), and they would help, but that is over now, nothing seems to help.

What is new with treatment is the intense twitching, the nausea, the cramps in my diaphragm (caused by inflammation), the high inflammation that makes me swell up, painful feet (Bartonella), insomnia.

I sometimes ask myself a similar question... 20 months of treatment, and I only have a bit less joint pain (not every day, but on some days), but then other symptoms came showing up. BUT, I have a detox problem too, so it makes sense that I can't find relief. And they just discovered more coinfections. My dr said it would make lyme treatment go much better. I hope so.

I don't think it's always a herx, it can be flares too. I 'saw the light' last summer when having a serious Bartonella flare. But I'm kind of lost again in distinguishing herxes from flares. And there are also the coinfections that can show up.

 

Hi Drew,

I got infected in 2007. For the 'most' part I was healthy. But I didn't notice the decline in my health the fatigue, lady issues, and then *%&# hit the fan. I traced it back to the tick bite I had. I became very ill in October of 2012. I self treated for about 3 months when I figured out what it was and then I went to an LLMD who started treating me in March 2013. My last visit with him was in August 2013. I was also seeing an ND and herbalist. I still see the ND. I am still healing but have not been treating lyme at all since Dec/Jan.

It really depends on the person.

I most likely have been infected for 25-plus years. Had some symptoms for most of that time--severe diarrhea that I just dealt with. I should own stock in Immodium!

Emotional struggles (depression, anxiety). For a while, shortly after probable infection, I had recurrent urinary tract infections, and developed a weird abscess in my back. The diarrhea and emotional issues would wax and wane over the years. Sometimes I'd experience extreme bouts of confusion--but they'd only last for a matter of hours or days. I remember calling my mom in a panic one day from my summer job during college break. I couldn't remember how to alphabetize!

I experienced two miscarriages, which could very likely be attributed to Lyme.

Was diagnosed this August after a series of escalating symptoms--worsening diarrhea, exhaustion, painful joints, insomnia. And one day I woke up unable to function--I was confused, dizzy. Had to ask my parents to come up and drive me to the doc. Primary care doc diagnosed dehydration from the diarrhea. Advised me to drink some Gatorade (!).

My therapist referred me to a naturopath, who ordered the tests and found I came up positive for Babesia, Anaplasma and Erlichia. Only positive Lyme band was 41, but both naturopath and LLMD think I have Lyme as well.

So yes--I have been sick for a long time, too. Just in treatment since September or October (I can't even remember when I first took the antibiotics). Have been gluten and dairy free since late August/early Sept.

Thanks for the input everyone. One of the things that scared me the most coming in was seeing how long everyone was sick, and I wasn't sure if that meant people were treating that long or they were just ill that long. This makes me feel much better!

I have had symptoms the last 11 years - and overall they got progressively worse/more as time went by. I've only started treatment in the last month. However, I made huge changes to my diet about 5 years ago (juicing wheatgrass, gluten free, meat free, dairy free, etc) and I think that has made a huge difference in my not getting/being even worse. My LLND agrees - she said she thinks without my having done what I have been doing in that regard, we would be looking at an even more challenging constellation of symptoms and severity.

As so many here know and share, it's not an easy journey by any means. I am optimistic and look forward to feeling better. I wish they same for everyone here.

hi drew, I had a high fever flu like illness 20 yrs ago. I was an active outdoors person, showing horses, gardening working full time. I first was told I had an anxiety disorder and put on antidepressants, and benzos like ativan and xanax. then was told I had fibromyalgia. I became increasingly sicker and sicker over this time, until finally I crashed in 2007, stop work. broke out in bull's eye rash in 2011, and have very ill ever since. I have been on treatment since october 2013. I am so tired of being sick.