Lyme Disease is NOT for sissies

[MooseMom]

A "herx" reaction?  Did you just make that up?

Oh, the anxiety about the Rocephin must be awful.  That's a good question...how long will you have to take it?  And how will you know when it is safe to come off it?  And what will happen when you do?  You have my sympathies, but that's not nearly enough, I know. 

[smcd23]

No MM a herx is not a made up thing. It's a herxhiemer reaction from the spirochetes dying off producing toxins that your body can't get rid of quick enough causing all sorts of unhappiness. My SIL has them from Lyme also. It's no fun from what I gather, almost worse than the Lyme itself.

[willowtreewren]

Update:

I have been back on the IV for a week now and starting to feel better. Oh, boy. Now that I have much of my thinking capabilities back I have discovered all manner of mistakes that I made during the week of "darkness." One doozie was taking twice the dose of Zithromax that I was supposed to. I found that out when I went to fill my pill organizer and did not have enough to get me through the week. Uh oh....

I called my Doctor and they are calling in 5 more....  Sigh. I realized today that since I was a whole week short, I'll be all out of sync from now on.

I no longer have to stay in darkened, quiet rooms, so that is a plus. One night, as I was going to bed, I told Carl that he could go ahead and turn on the lights. When he did, he discovered that the switch to the kitchen light was on the fritz. 

I cannot do the hyperbaric oxygen treatments because of my ear. That was a low blow. But I have been researching different supplements to augment the antibiotic treatment. Just over the weekend I learned from friends that their granddaughter was on the IV for a YEAR before she was cured. And this morning in the car line at school (yes, I felt well enough to do that), a parent told me that her cousin did the IV for a year and a half. Not the most encouraging news...

On the plus side, they both were finally CURED!

Aleta

[MaryJoe]

   Welcome back to the light!  I'm glad you are feeling better.  It seems like this is going to be an epic journey, but at least the outcome is hopeful.  I know you've been fighting this for almost a year already and to hear that a year to 18 months more of treatment is possible must be discouraging. I'm constantly amazed at what a strong fighter you are!    I think Lyme's (and all the other stuff) has met its match!

 

[MooseMom]

Aleta, in reading how it could be a year on the IV before you are cured, my mind instantly went to all of the D patients who are waiting for a transplant, like Carl had to wait.  I can't help but ask you if your experience with these tick-borne illnesses have given you any insight into what Carl had to go through. 

I'm glad you are seeing improvement!  That's got to make you feel optimistic!

[chook]

Wow, Aleta! Have just been reading all about your drama following a tick bite. We have ticks here in Australia. Luckily the one where I live is called a scrub tick and is a harmless tick compared to the one you have been bitten by. My heart goes out to you - you have been through the washer in the past twelve months. Sending all the best wishes for a full recovery and SOON!

[willowtreewren]

Mary Joe, I'm a fighter, all right! 

MooseMoo, Carl and I have talked about how we have changed places.  But even so, doing the IV treatments are NO MATCH for dialysis. They don't take as long for one thing. I can do them without help and just about anywhere. BUT, there are NO days off. Sometimes I just wish I could go to bed without worrying about doing a treatment! 

Chook, You are lucky not to have Lyme in Oz. I have read that it is moving more into the Southern Hemisphere, though. I hope it never makes it to your wonder island. 

I'm doing better every day. Tomorrow I will try to handle the headache with just Tylenol instead of Naproxen. I hope it will take care of it....and then I can wean myself off any of the pain meds. 

Aleta

[natnnnat]

We do have Lyme in Oz, Chook.  My dad's cousin has it, she lives in Mt Tambourine, near Brisbane.  I just heard about it the other day.  I'm confused though, people are pretty calm about tick bites here.  Except that one in January where my friend had a tick biting her forehead, she wasn't very calm about that.  But I never heard of Lyme disease before. 
Good luck with Tylenol dear Willow, let us know how it goes.
xn

[chook]

Thanks for that, Nat. I've never heard of Lyme disease. Sad to think it is here but maybe not that common. The little tick we have here in Western NSW you just pluck off, no worries about leaving the head in, etc. I think they can make certain people a bit ill but nothing like Lyme. The other one up north I think is a paralysis tick but too dry here for those.
Yep, one of my sisters is a real clean freak and years ago she ended up with a scrub tick on her back, where she could neither feel or see it. She was horrified!!!

[jeannea]

I'm so sorry this is still tormenting you. I believe you that the pain is awful. But please be careful about taking Naproxen. It's not recommended for those with kidney disease. Narcotics might be a better choice. Just please talk with your docs about it. Keep on keeping on.

[willowtreewren]

Time for another update as I approach the one year anniversary of being bitten.

I had my second ER visit this week. Just a little scare due to negligence on my part from being over tired when hooking up. I forgot to flush the prime the line, then forgot to check the rate of flow. Turns out when I DID check, around the time that I thought the treatment should be finished, The line was still full of air. Oops. but then, I couldn't get a draw, nor could I push any saline. That was NOT GOOD.

At ER they turned me on my head to keep allow the end of the PICC line to move a bit away from my heart (I can feel it where the end of it rests). Presto, they got a good draw.

At my last doctor appointment they brought up starting me on Flagyl. Oh boy. I have done my research and it looks like a very fun ride. As in NOT. But what it DOES do is fight the cysts that the Lyme bacteria form to hide in the body. My Lyme has definitely gone into cysts since it flares so quickly after suspending any of my antibiotics.

We are getting ready to celebrate the 35th Anniversary of the school next month and I really didn't want to be dragging around sick as a dog then. On the other hand, I want to fight, fight, fight!

 

Here is a link if you want to read the story about the school anniversary: http://www.knoxnews.com/news/2013/mar/05/montessori-owner-will-remember-schools-35-years/][url]http://www.knoxnews.com/news/2013/mar/05/montessori-owner-will-remember-schools-35-years/[/url]

Now that pool season is right around the corner, I am trying to figure out how to at least just GET IN! I talked with the nurse who changed my dressing today. She gave me some good ideas. But what I think I will do is buy some Tegaderms that will fit over my access point. It is already covered by a Tegaderm, but the line extends out the bottom. I'll bend the line up, cover the whole deal with a 4x4 gauze and then the second Tegaderm. Viola! That should do it.

 

We are getting ready to head back up to tick territory tomorrow (It's Spring Break again). The only tick I want to see is one that will such this disease OUT of me. 

I have had a headache since January. It would be nice to be able to get rid of it for a bit. It looks like this is going to be a very long journey...

Aleta

[smcd23]

Aleta - maybe you will know this, but Tony and his sister want to know - if Lyme is the bacteria in the blood, why can't dialysis clean em out during a bad die off to prevent the herx? Like do the abx and get a good die off working, then go on dialysis for a few hours every week or so? Seriously, this has been a conversation at my in laws house, and we can't figure out why it's never been considered, seems in theory like a good idea....

[willowtreewren]

That is an interesting proposition, Shauna. I know the Babesia are actually inside the red blood cells.

I would have to look up the chemistry of dialysis. The filter's membrane and the dialysate are designed to allow only certain chemicals through...

But that does pose an interesting possibility.

Lyme actually moves out of the blood pretty quickly because of its spiral configuration. That is one reason it is so hard to fight.

How is your SIL doing?

Aleta

[smcd23]

Maybe we are onto something here! Dialysis for Lyme! I am sure there could be some sort of configuration that could make it work, or maybe even plasmaphersis or a centrifuge type device. Quick let's get a patent on this (or something) and then get some doctor to give it a whirl 

My SIL is doing okay. She apparently has a mold allergy and her apartment is ridden with mold since the neighbors tub flooded. The complex is willing to give her a new apartment, but she would have de-mold (to remove any possible trapped spores) which can be a long process, and the complex she lives in wants her to move in like a weekend. So we are trying to work out the logistics of that, perhaps by moving important stuff to my FIL's house to decontaminate and then the other stuff to storage to tackle at a slower pace. Apparently this mold allergy is part of a bigger issue where she can't process or filter off the die off. So for now she's stuck in a just stay functioning pattern with a slow treatment plan until she can get the other thing under control (it has a technical medical name, but I can't remember what is right now, but basically because she has the Lyme and co-infections and the mold toxicity her body just can't fight that much off at once) My FIL convinced her to see another doctor who specializes in Lyme, but he also went with her to her current doc, and I guess he doesn't feel she is quite the quack the rest of us do after explaining this other thing she has going on, but only time will tell. I think she is back on the sound wave treatment again.    At least the narcolepsy seems to be at bay for now.

I feel so bad for her, I really do, but a large part of me worries she has brought a lot of this upon herself - why should it have taken SO long to figure out she had this other thing going on? And I feel bad because I know my son wants to see her more, but she's so aloof or never feeling well enough to play with him. He misses her, and that makes me sad.

[cariad]

Keep that fighting spirit, Aleta. I am constantly hoping you'll reach the end of this ordeal soon. Congratulations on the anniversary! 35 years - that's huge!!!
 

[willowtreewren]

Thanks, Cariad. 

[willowtreewren]

Time for another update. 

I had to slowly dig myself out of that relapse in April. It took a while, but little by little I kept getting better. Of course, with Lyme (and co-infections) you have good days and not-so-good days.

In continued research on Lyme treatments I kept seeing that hyperbaric oxygen treatment (HBOT) had some positive results. In one landmark study, about 1/3 of the participants were completely cured, 1/3 were helped significantly and 1/3 stayed about the same or saw some improvement. That sounded like pretty good odds! 

The problem is that HBOT is not approved for treatment of Lyme, so it would be out of pocket! Sigh. I talked it over with my Lyme doc and he approved of my going for it and wrote the prescription. I had done my homework and told him that I needed 40 (yes, FORTY) treatments at 2.8 atmospheric pressures. It would have been ideal to spread these out over 40 days, but my busy schedule wouldn't allow for that much time off. Instead I opted for doing 2 treatments a day for three weeks. The next obstacle was to find a center that could accommodate me. That was no easy task. None of the local hospitals could handle the high pressure I needed. I then cast my net further away. A hospital about 2 hours away could do the treatments, but they had no openings in my limited time frame. Plus they told me that the treatments would be thousands of $$$ EACH!!!! They were very helpful, though (unlike the very snippy folks I talked with locally). They told me about two private clinics that might be able to work me in. The first one I called was no longer doing hyperbaric. 

But the second one..... 

They were so very helpful and after hearing what I needed and when I needed it, said that they could work me in, better yet, their fees were like 1/10 as much as at a hospital! Next I had to get all my medical records sent. That included the ENT I had to see to be cleared for hyperbaric. I am deaf in one ear and it is surgically closed (I get a kick out of medical folks who say they want to look in that ear!). Luckily he was in the same hospital comples where I had my MRI last year and he simply pulled it up and gave me the go-ahead!

Okay! Three weeks away from home....we looked into camping and found a state park not too far from the clinic. BUT they only allowed folks to stay for 2 weeks. I called them and talked with the head honcho who said that they could work with us on that. That obstacle down. Then communication back and forth with the clinic.... until OMG! Unless I wanted to wait until a week later because of the availability of the consulting doctor, I would have to be there at 8:00 AM the day after our last day of work at school. And that was the day ofter I had to fly up to NY to see my Lyme doctor!!!! There was no way we could have the camper packed and ready.

And here comes the incredible part....the coordinator at the clinic told me to just spend that night with her and we could go into the clinic together in the AM. That would allow Carl to bring the camper down the next day.

So I did my three weeks of hyperbaric. I tell you, it was great! Except one week in when I started having too much die-off at one time....major, major bone pain. Just awful....

Oh, and getting bitten by another tick (that didn't worry me since I'm on so many antibiotics!) But when Carl was bitten by a deer tick, the little Lyme B@stards, I FREAKED OUT!  It was a major deal, even after talking with his transplant team and being told that he needed to get on doxycycline, to get him treated. The doctor at the HBOT clinic stepped forward and wrote the prescription. [sidebar - we are changing our PCP after that little go-round]

Anyway, I saw my Lyme doctor Monday. He is pleased with the "boost" the HBOT gave me. Sooooooooo.....  I have 2 more weeks of IV and then we are going to try my going off it again. I don't know whether to be terrified or elated. Only time will tell. When I stop the IV I will start another oral antibiotic that is in the same family as the IV. I did that last time, too.

And now I'm looking for a new PCP. One who at least understands that some folks aren't cured of Lyme with a month of doxycycline.

[MaryJoe]

    I'm so happy everything came together so you could get the HBOT therapy.  Sounds like it worked well for you.  I hope your able to come off the antibiotics with no ill effects this time.  I've got all my positive energies flowing your way!  After your experience, how did you and Carl manage to get bit by a deer tick?!  Do the little suckers have it in for you guys, or what?!     I'm glad you were able to get him on antibiotics right away. You've been through the wringer since this started, nice that a little sunshine seems to be headed your way!

[willowtreewren]

MaryJoe, we were camping in a state park. The ticks were so bad that within 30 minutes of arrival I had found two crawling on me (Lone Star ticks). And I had not even walked on the grass, but only on the gravel part of our campsite. Gives me the heebie jeebies. 

The park was lovely, and we listened to many birds including a whippoorwill AND the deer grazed all around us. Although I loved seeing the deer (and turkeys and otter and rabbits, etc), my brain kept saying, "tick, tick, tick."

 

I will never look at wildlife the same way again.

On the super plus side, we not only survived three weeks of camper living, but really enjoyed it. Now I know that when we finally DO retire, our dream of long-term travel in our camper is not so far-fethched! 

Aleta

[okarol]

I saw this article today: When Lyme Disease Lasts and Lasts http://well.blogs.nytimes.com/2013/07/08/when-lyme-disease-lasts-and-lasts/
and thought of you WTW when I saw the image of the woman with a giant tick. So sorry to anyone who has to experience this!

[willowtreewren]

I saw this article today: When Lyme Disease Lasts and Lasts http://well.blogs.nytimes.com/2013/07/08/when-lyme-disease-lasts-and-lasts/
and thought of you WTW when I saw the image of the woman with a giant tick. So sorry to anyone who has to experience this!

I saw that, Okarol. the picture kind of tickled me, because that is a FLEA on the person's back. 

I wonder if I should feel lucky that I am one of the "few" people who aren't cured by the standard treatment. That part of the blog was actually in error.  Sheesh!

Just today, my dental hygienist was telling me that her grandmother has been fighting Lyme disease for 20 YEARS!!! 

Just a few more days before I try going without the IV treatment. I am understandably nervous, but also hopeful that I can finally lose the PICC line.

Aleta

[cassandra]

How are you doing Aleta?

Love, Cas