Lyme Disease is NOT for sissies

[MaryD]

Onward, Aleeta and ever upwards!   

[MooseMom]

This is wonderful, Aleta.  I am so very happy to hear that things are really finally improving for you.  I think this will be a special Thanksgiving for you and your family.

[cariad]

The BEST news!

I am thrilled that you've found this outstandingly dedicated and compassionate doctor, too. You are going to beat this thing, Aleta! 

[willowtreewren]

Thanks, everyone.

I'll let you know what the doctor says after my visit tomorrow. I will be so glad to be finally rid of this disease!

 

Aleta

[boswife]

Sending best wishes for good news tomorrow     

[amanda100wilson]

great news

[willowtreewren]

I got even better news a few minutes ago. The EOBs for the IV started coming in this evening (i always get them on Sunday night!).

The Rocephin is being covered by BCBS! It is a good thing. It costs over $4000 a month! Oh boy!

Aleta

[cassandra]

Congrats Aleta, glad to hear some more good news.

Keep strong, and fighting fit, love Cas

[MaryJoe]

Sending all the positive vibes I can muster for more good news from your doctor today.  I'm so glad BCBS is going to cover your Rocephin IVs, it's a great antibiotic and seems to be working so well for you.
Travel safe.

[willowtreewren]

I have been playing catch-up at work since returning from my trip, but it has been good.

My labs are still looking good, so there is no reason to cut my treatment short. 

They are very pleased with my progress, especially since the second antibiotic has jump-started improvement again. After I exhaust this month's supply of Zithromax, they are going to ramp it up to an even stronger oral antibiotic. Kill those suckers I say. They wanted to make sure insurance would cover the added antibiotic before starting me on the REALLY expensive one! Isn't that considerate?

 

I can 'hardly believe the change in my stamina! I'm working 10 - 12 hours a day again and just feeling "normally" tired after such a grueling schedule.

I still have pain in my knees, hips and back, but my fingers no longer hurt. 

Someday soon..... Someday soon.....

Aleta

[cassandra]

so glad to hear all that. Don't overdo it though.

love Cas

[cariad]

Oh, this is just superb! You are trouncing Lyme Disease and an insurance company is actually doing what they are supposed to do.   

[willowtreewren]

yep!

I did another marathon trip to New York and back yesterday. I'm becoming a pro at this!

They added the new expensive med!   

I have only a week of one medicine left. It is an antihistamine that helps control the headaches. I suspended it before my last visit to see if the headaches would come back. After starting it back up, it took a week to get them under control again. Oiy! Anyway, I'll start the new med and it by the time I go off the antihistamine, the new one should have kicked in. This will be a way to see how powerful it is and whether it can kick butt.

 

The doctor thinks (with justification) that I have Babesia in addition to Lyme. All the antibiotics in the world will not cure me of Babesia, but this new med should.

They also added a medicine that will help protect my gallbladder from damage caused by the IV.

My labs are STILL really good. 

I'm feeling pretty normal, and now it is just a matter of making sure we get everything completely knocked out. 

I go back up on December 10. My next appointment after that is Christmas Eve, but we will be up there for a visit then anyway.

Aleta

[willowtreewren]

It has been a while, but I'm still fighting it.

We added the anti-parasitic a couple of months ago. There is not much way to know how much that is helping except for tracking my headaches. I have a visit with my doctor on January 7, so in preparation for that, I stopped the medicine that controls the headache to see if it returned. It DID, so that was a good indication that I still have the babesia (parasite from tick bites).

BUT, the big news was that we discussed at length my going off the IV antibiotic and adding another oral antibiotic. We went ahead and did that, but I insisted that I keep the PICC line for a bit after ending the IV, just in case we needed to start the IV again. My doctor didn't like that idea but went along with my wishes.

So Friday, January 11 was the last IV treatment. I hadn't gotten rid of the headache yet, but it is not unusual for it to take about a week for the antihistamine to work when I start it back up.

But this Tuesday, I realized that my headache was getting worse. By yesterday Tylenol wasn't helping. Today I switched to Naproxen and THAT doesn't help against this awful pain. Plus I've started having some sensitivity to light and noise, too, and that dreaded difficulty talking.

I emailed my doctor this morning and he called back in only a few minutes. If I do not improve by Monday, we will start the IV again. He even said that it looked like I was wise to hang onto the PICC line. I do NOT want to go back on the IV, but I can't function very well with all this pain (and other symptoms). I just want to get BETTER.

 

Aleta

[cariad]

Oh, Aleta. I am sorry to read that you still have a way to go to be rid of this horrible condition. You *will* get there. It is so hard to keep positive in the face of painful, debilitating illness, but you are being smart and advocating for yourself and all of these efforts are going to pay off in the end.

Keep fighting! We're all behind you! 

[MooseMom]

I truly had no idea that Lyme disease could be so dreadful.  This thread has been a real education for me, but I sure wish you were not my teacher, Aleta.

Wait a minute.  I've just gone back and reread this entire thread.  I was amazed to discover that you've been battling this since APRIL!

I realized that I'm not sure what it is exactly that you have.  I've heard Lyme disease, anaphalopalosisitisthingey and now babesia.  Do you have multiple funky organisms in there?  You will now be on an IV antibiotic (possibly) AND an anti-parasitic?  Is that right?  I'm sorry...I've sorta lost the plot.  Thank goodness you are one of those people who keep things organized!

Overall, how would you assess your improvement since April on a scale of 1 (being none) and 10 (being cured)?

[willowtreewren]

I truly had no idea that Lyme disease could be so dreadful.  This thread has been a real education for me, but I sure wish you were not my teacher, Aleta.

Wait a minute.  I've just gone back and reread this entire thread.  I was amazed to discover that you've been battling this since APRIL!

I realized that I'm not sure what it is exactly that you have.  I've heard Lyme disease, anaphalopalosisitisthingey and now babesia.  Do you have multiple funky organisms in there?  You will now be on an IV antibiotic (possibly) AND an anti-parasitic?  Is that right?  I'm sorry...I've sorta lost the plot.  Thank goodness you are one of those people who keep things organized!

Overall, how would you assess your improvement since April on a scale of 1 (being none) and 10 (being cured)?

MM, every time I see my Lyme doctor, I complete an assessment of symptoms. To answer your last question, earlier this month, I thought I was at maybe 9.5 on your scale.

The reason the "plot" is so confusing is because the (these) disease (s) is so hard to pin down. Ticks usually carry co-infections. I most likely had (have) at least two of them (Lyme and Babesia) with a strong possibility of the third (anaplasmosis) and perhaps even more.

Another interesting (discouraging) twist is that symptoms often improve and then get worse for no apparent reason. I had been improving pretty steadily, especially since adding Zithromax before the holidays. At that point I was on an oral and an IV antibiotic along with the anti-parasitic. My doctor added another oral antibiotic to replace the IV, but that doesn't seem to be enough.

Yes, I came down with this on April 1 (April Fool's on me!). Some people battle this for years. They are usually ones who don't catch it right away so that it "festers" in the body. Unfortunately, the Lyme spirochetes (and many of the other nasties) go into areas of the body that protect them from many forms of treatment. Oral antibiotics, especially have a harder time reaching them. The IV antibiotics go directly into the bloodstream so have a better chance, but still not wholly effective. I had really hoped that I would be one of the lucky ones and get it eradicated through early and aggressive treatment. Sigh.

I have to do a complicated pro-biotic song and dance to maintain my over all health, because the massive amounts of antibiotics can wreck havoc on the gut (and other systems).

I have to admit that I'm really getting a bit weary of all this. Bathing requires wrapping my upper arm with that sticky Glad wrap to protect the PICC line, and for showering I use Transpore tape (left over in our dialysis supplies) to tape the edges of the wrap. I so want to really scrub that arm. 

As the day has gone on, the head has gotten worse. I am looking forward to another dose of Naproxen. (Take with food and drink plenty of water!) I'm so glad I still have some from the earlier bouts with the head issue.

And even with all this going on, I still consider myself lucky. I can still work. Some poor folks with Lyme, etc. completely lose their lives.

I can't remember if I wrote about this funny side note. When I fly up to see my Lyme doctor, I land in White Plains, NY, and then rent a car to drive about 30 minutes to the doctor's office. I pass Old Lyme Road on my way. It gives me the heebie jeebies every single time I pass it.

 

Aleta

[natnnnat]

A cousin of my father has just been diagnosed with Lyme Disease.  I came looking for this thread.
Darn it, the saga is still ongoing. Aleta, this has been ages of migraines and nonsense for you! 
On the other hand, there is lots of information here with strategies and the names of medications, if nothing else it may help my dad's cousin.

[willowtreewren]

A cousin of my father has just been diagnosed with Lyme Disease.  I came looking for this thread.
Darn it, the saga is still ongoing. Aleta, this has been ages of migraines and nonsense for you! 
On the other hand, there is lots of information here with strategies and the names of medications, if nothing else it may help my dad's cousin.

I hope so. I don't know what the situation is "down under," but it is hard to get proper treatment here in the states. I am so sorry that your dad's cousin is fighting this. 

Aleta

[MooseMom]

Aleta, I got some sort of mysterious infection about 9 years ago that landed me in the hospital.  We had been on holiday in Wisconsin, and I awoke one morning with terrible abdominal pain on one side.  We hurried back home; I was in agony for 3 hours.  I was in the hospital for 5 days with an infection they never were able to identify.  They gave me a triple cocktail of IV antibiotics, and yes, let's politely say that they give you a good intestinal cleanse.   Do the probiotics help?

LOL!  No, I don't think you posted about having to pass "Old Lyme Road".  Sounds like the title of a horror movie.  Maybe it is... or will be.  You'd be the star.   Maybe Jessica Chastain could play you, the warrior goddess fighting a stubborn infectious agent.  Just give her the Oscar NOW!

Be sure to give us an update on Monday.  I hope you will improve over the weekend and will have no need for the IV antibiotics.

[willowtreewren]

Do the probiotics help?

Hi, MooseMom. You are a scream! 

Yes, the probiotics help. I have to take them at times I am not taking the antibiotics. The antibiotics have to be taken with food and lots of water, so I do them at breakfast and dinner. Then I take a probiotic at midmorning, followed by yogurt with lunch. Then I take a different probiotic in the evening with another dose of yogurt. I have always had a pretty strong gut, but when I'm traveling and can't get (or forget) the yogurt or one of the probiotic doses, I do get a grumbly tummy. Nothing worse so far, thank goodness.

I am back in my cave today. Dark and quiet! It is like hibernating. And composing this post has taken about twice as long as usual. The neurological impact is pretty severe. I had forgotten how bad it was during my five month honeymoon on the IV.

Last night I raged out all my frustration to a sympathetic ear. Did a good job not crying, because I knew it would only make my head hurt all the worse. The most frustrating part is that I was so looking forward to going to the gym and having a long session in the pool. Exercising in the water has always been my go-to method for staying sane. So, I guess that is not going to be an option for a while longer.

That leaves me 

 

The treadmill just doesn't do it for me. I have hunted for another outlet, but haven't found one (she admits 5 pounds heavier). Sigh.

I can't remember how long it took before the IV reduced the headache, but I'm thinking this coming short week may not be too pleasant at work. At least it is only a 4-day week.

that is enough for now..... eyes need a rest.

Aleta

[MooseMom]

Oh gosh, I hope you don't ever feel obligated to risk further headpain just to post a reply on this thread!

Is there a medical reason that you can't go to the pool?  I, too, find swimming to be the best treatment for any sort of anxiety or stress (but I'm a bit precious and refuse to swim indoors; it HAS to be outside.).  Is it the PICC line?  Do the antibiotics make it risky for you to go to the gym/pool?  Or is it that you just feel too bad to go?

Nothing wrong with hibernating.  I'm a big fan of that particular (in)activity.

I really hope you feel better soon.  I hate to think of you still feeling this way come April.  We don't want to have to commemorate your Tickaversary.

[smcd23]

I know we've talked about my SIL Aleta, but she is also still battling along. Unlike you she refuses antibiotics. Her battle has been going on for 2 years now I want to say? Sadly, it's getting to the point where it is having an impact on her cognitive function. She had Lyme for about 2 years she suspects before they caught it. I guess they believe it is in a lot of her organs including bladder which I guess makes things a little interesting. She had the 2 co-infections you mentioned on top of it all. Marcus has come in with a few ticks but luckily none have been engorged and we always save them just in case. We also have the tick twister now to remove the ones we find, because the day Tony isn't home when I find one, I won't be able to pull it off. They freak me out way too much.

I do hope the next round of antibiotics help put this thing to bed for you! I think of you often!

[thegrammalady]

aleta, i've been following this on facebook and hadn't looked at this post. i didn't realize how long it had been going on. i feel bad, somehow i feel like i've let you down. not being there with my  know that i do think of you and am wishing for a full recovery.

s

[willowtreewren]

Grammalady, not to worry!

Here's my update. Over the long weekend things kept going downhill. I stayed in my darkened quiet cave to cope the best I could. I guess I'm a hermit at heart.

 

Sunday night I e-mailed my doctor about how the symptoms had gotten worse. When we talked on Monday, we talked about whether I could be having a herx reaction to the new antibiotic or whether this was a relapse from suspending the IV antibiotics. He pretty much left it up to me what to do. Since the symptoms have been exactly like that last time I went off Rocephin (way back in September) I decided that I couldn't take that risk again. So as of last night I have resumed the IV.

I'm also researching doing hyperbaric oxygen treatments to augment the antibiotic treatments. I have heard that it can be pretty hard. Tthe high level of oxygen forces the Lyme spirochetes and other nasties out of their hiding places so the antibiotics can zap them. They also die off because they can't tolerate oxygen. Then the body is super stressed trying to get rid of the endotoxins caused by the die-off.

Also the hyperbaric treatments would not be covered by insurance. I would be willing to go through that if it would take care of it once and for all.

I may not be a candidate, though. When I was a child I put something in my ear. I have no inner ear structure in that ear now and it has been surgically closed off. I was told that I could never go scuba diving because of that. Doing the HBOT is like going down about 45 feet. Carl suggested that maybe I could have my ear opened up for the procedures.....

Who would have thought that an eensy weensy tick could be such a big problem? I'm now calling all my infections the ticky ickies. 

I am fairly confident that resuming the Rocephin will get me back to full functioning again. But now the question is....How long will I have to continue doing this. I was a bit gun-shy about going off of it this time. It will cause even MORE anxiety next time. Sigh.

I slogged through a day at school today. The children helped by whispering and I wore dark glasses in the classroom. Even so, by 3:00 PM I was totally exhausted. I came home and slept for an hour and a half and then I had enough energy to put a pot of soup on the stove to reheat for dinner. Wow! What a feat of energy! 

Aleta