Lyme Disease is NOT for sissies

[willowtreewren]

While on vacation in Massachusetts a couple of weeks ago I was bitten by a deer tick. I never got the bull's eye rash, so I thought I had dodged the bullet, but no such luck.

Sunday night I started feeling "weird" around 7:30 PM. By Monday morning I was running a very high fever (103.5) which was bad enough, but not as bad as what was coming down the pike for me.

I saw the doctor Monday AM and she started me on antibiotics to treat the disease even before the tests came back. My fever has come down (after 24 hours), but I have had severe bouts of shivering, so bad that I have broken a couple teeth! (Oh, joy! now I'll have to have more dental work).

During the night I sweated so much that I lost 5 pounds of fluid. And that resulted in my passing out twice before I could get more fluid back into my system.

To top it off, I'm extremely weak. Even standing in the shower today was a stretch, but I had to get my hair washed.  It was AWFUL after all that sweating.

And as a final insult, the antibiotics will make me susceptible to C-diff for the next 6 months. 

Isn't life interesting? 

I just hope I can hold on to my mental capacities. I have read that Lyme Disease can make you go a bit "off" in the head.

Whoops. I should have kept track of how many times I made mistakes in typing this. 

Aleta

[willowtreewren]

I forgot to mention the elevated heart rate! How do you get the idea of racing heart beats across. They tested my heart rate twice at the doctors office to see if the first reading was perhaps due to being "excited." Duh. I could hardly sit up. No, I wasn't too awfully excited.

 

[cariad]

Oh my god, Aleta! I am really, really worried about you. You're keeping your characteristic sense of humor in the face of adversity, but Lyme disease can be very dangerous as I'm sure you know. Any idea from your doctor if catching it early as you've done leads to a better prognosis? I do hope so!

I am keeping a good thought that you will be symptom free soon. Let Carl be your caregiver for a while, a bit of role reversal. Now, admit it - that would be exciting!

Hoping for a full and quick recovery.
 

[MooseMom]

All this from a stupid tick!  Boy, you've really been through the wars.  I'm sort of surprised they didn't hospitalize you for a day or two because your symptoms sound epic.

Did you feel the tick bite you, or did you find it after the fact?

I hope you feel better soon!

[amanda100wilson]

I'm glad to hear that they caught it early, but I am sorry to hear that you had to suffer that.  I think that the prognosis is much better when caught early on, and I suppose that by having he fever etc. and not having a sub-acute episode, at least you have been treated for it

[willowtreewren]

Thanks, ladies.

I didn't feel the tick bite (they are tiny). And it didn't itch like dog tick bites, either. But I found it some time later. I was immediately concerned and looked up Lyme disease. Catching it early is the key. I shouldn't have any long-term effects, but geesh! The short-term is bad enough! I'm feeling much better today and my heart rate has come down some. Also, my fever is virtually gone. I'm mostly left with the extreme fatigue and the awful (near migraine level) headache. I'm getting lots of rest. GAH! I'm tired of resting, but there isn't much else I can do!

 

MM, we actually considered going to ER twice in the past 24 hours. The first was during the extreme bout of shivering. It was pretty bad, but I figured that by the time I got there it would be over.  And I was right. It only lasted about 40 minutes and then I fell asleep exhausted. The second was this morning. I passed out twice. We are pretty sure that was from dehydration from the overnight sweating. I'm airing the bed hoping that it will be dry by tonight...It has a ways to go! After Carl got some water down me (he broke a glass in his hurry), I started to feel better. I haven't had any "episodes" today. 

At least today I can sit up and cruise on the computer when I'm not sleeping. All I did yesterday was sleep.

Maybe tomorrow I can walk to the mailbox.  But believe me, I will not push it.

Aleta

[Jean]

Good grief Aleta, this whole thing is a nightmare for you. Dehydration and pain and fatigue, what scary symptoms you are having. Glad you went to the Dr. early on and I am sure that by doing that you will recover faster, but please, please, dont push it.

[MomoMcSleepy]

You poor thing!  I'm glad you got treatment right away, and hope there really are Jo long-term effects since you got some antibiotics right away.  I can't believe you chipped your teeth  . Poor baby!  Sounds awful. 

[willowtreewren]

I'm still "resting" but not too happy with it. 

The thing is, I can't do much else. Today I stayed sitting up until lunch time and then completely crashed for over an hour, so I'm going to have to revamp my plans. 

I was hoping to go back to work tomorrow and just sit in class, with the kids coming to me (I got the sweetest batch of get-well cards from them). Now I think I'll wait until Friday and just work half days for a while. We'll see how that goes. I'll have to work all day on Monday, because my team teacher has to be out. I wonder if the 5 hour energy stuff really works. 

I'm too unsteady on my feet to consider driving, so Carl will have to take me home at mid day. Fortunately we only live about 5 minutes from school.

I didn't know when I wrote my first post that on Tuesday he was so busy taking care of me during my fainting spells that he didn't have time to fix himself lunch. The poor guy had to eat a package of crackers from the snack stash. And he doesn't have any fat reserves to draw on.  OH, I felt so sorry for him!

Mostly now I am just tired, tired, tired. but that will go away. The headache has lessened. The fever is gone. And there are times when I'm sitting that I could swear that I'm just fine. Like this morning when I got up, I told Carl that I was feeling MUCH better. But then getting dressed exhausted me.

 

At least there were no passing out incidents! 

This will pass. It will just take time. In the mean time, I'll just HAVE to take it easy. (Not an easy thing for me to do!)

Aleta

[lmunchkin]

Goodness gracious, Aleta!  Im away for a couple days, and all "Hell" breaks loose!  LOL!!!  Girl, do take care of yourself.  So glad you caught it in time.  Lymes disease is nothing to take lightly for sure!

Hope you have a speedy recovery!
lmunchkin
 

[willowtreewren]

I thought I should give an update....

The test for Lyme Disease came back negative, and positively negative, BUT, I have another tick-borne disease - anaplamosis. It is another nasty one, but prognosis is good.

I missed two weeks of work, and I'm now back at school on a very limited basis. I tire very easily and have a "mushy" brain. that will hopefully improve, because I'm rather tired of not being able to complete sentences when talking. Typing is much easier, since I can take my time and look for the tell-tale red squiggly lines. I still find numerous mistakes, though. But now I have an excuse!

 

I only wish that my lack of appetite had continued! that would have been a silver lining. I'm slowly, slowly regaining my former self. And soon I hope to be participating fully and reading more (that is also somewhat of an issue).

Aleta

[cariad]

Crikey, Aleta!

What is it about you that ticks find so delicious?

I was advised in Africa to add a special insect repellant to the wash so it would soak into my clothes. As I did not do my own laundry in Africa, I was not able to test this advice.

Hope you're back to normal soon. And hooray for the positive-negative result!

[smcd23]

Anaplasmosis is nasty indeed! Tony's (my significant other) sister has Lyme, ansplasmosis and a 3rd illness that i can't remember from a tick. Even though we live in New England she thinks she got but in 2009 in Indiana. They just diagnosed her about 6 months ago. She's been struggling ever since (and for awhile before diagnosis too). She can't take the antibiotics because she's allergic, so her doc has recommended all natural remedies. If you don't start improving (but it sounds like you already are) send me a PM and I will give you the names of the stuff she's on.

I guess they were not kidding up here when they said it was going to be a bad tick season! I'm going to be extra careful to check the dog and toddler after playing outside now.

[willowtreewren]

This is late in coming, but I thought I should give an up-date!

In another thread I mentioned the onset of severe headaches that had me go in for an MRI. My primary care physician started treating me for migraines, but the effectiveness of the med cocktail was slowly wearing off. When I got to the neurologist as a follow up to the MRI, she immediately took me off all the pain meds (telling me that I would have a horrific headache at first) and put me on an antihistamine. She suspected that the spirochetes from the tick had attacked the membrane surrounding my brain causing the pai. Viola! For about a day after coming off the pain meds and going on the antihistamine I had a pretty intense (but not crippling) headache, and then the antihistamine kicked in and the headaches were gone. This was after over two weeks of debilitating pain!
 

But then evidently the spirochetes decided to attack my knees. I reached the point that I could hardly walk and getting up from a sitting position took a looooong time! So I'm back on antibiotics and that really seems to help! I just hope this round takes care of it once and for all.

   But to be honest, I'm not holding my breath.

Tick borne diseases are very nasty and can play havoc with all the organs and joints. If you have EVER been bitten by a deer tick and develop weird symptoms, even years later, it is a good idea to think Lyme or some other tick disease. The spirochetes can "hide" in cysts in the body and re-emerge months or even years later.

Aleta

[MaryJoe]

I am very happy to hear that the headaches have stopped, but sorry that you're now having problems with your knees.  Hopefully the antibiotic willsoon have that  problem solved as well.  Is there any way for you to find out if these cysts have formed in other joints or organs, or is it one of those terrible "you'll know if it happens again" situations?

Anyway, so glad you have a doctor that's on top of the situation, and that you are feeling better at last.

  

MJ

[smcd23]

Aleta, my sister in law is battling tick born illnesses. She said the spirochetes die if your body temp goes over 100 degrees. Perhaps try taking a hot bath?

[boswife]

Holy crap!!  im so sorry for all this and to such a nice lady... How dare it!!  How very frightning and horrably painful time you've had.  I hope that you get a handle on it and get it rid of it perminantly..  Im so sorry Aleta.  I do wish you well. 

[amanda100wilson]

Aleta, I hope that they sort this out soon for you.

[cariad]

Oh, wow. You've been through hell. 

As if ticks aren't awful enough when they're just being ticks, they have to spread disease as well. I hope you can put this horror completely behind you, Aleta. Thinking of you. 

[willowtreewren]

Thank you everyone for your kind thoughts.

There has been marked improvement since starting the second round of antibiotics. The only thing that has me worried now (well, related to this irritating episode in my life  ) is that the first round of antibiotics lasted 30 days and did not eliminate the spirochetes. I'm only taking the antibiotics for 14 days this time.

From what I've read, the spriochetes go after the major organs and large joints. My concern is that if they are not wiped out this time they will go after my heart and other organs. 

A friend of my daughter's had to wear an IV device to administer antibiotics to combat the spirochetes. Ugh!

The other problem (and I imagine the reason that they only prescribe 14 days of them) is that a common side effect of this antibiotic is getting C-diff. I've been dutifully eating yogurt every day. I have to time things so that my calcium/yogurt intake is at the greatest time differential from my antibiotic dose as possible. I'm a walking alarm! 

It has made for an interesting time. Before this second round of antibiotics, I accidentally discovered that the spirochetes are still inhabiting the membrane around my brain. We had guests over for some swimming and dinner. Dinner was earlier than usual so I didn't take my antihistamine, thinking I would have a snack and take it later. Well.......no surprise, I forgot to take it. And the next morning my head was pounding again.

I'll try that "experiment" again before going off the antibiotics to see if there has been any improvement. I don't go back to see the neurologist until July 30!

My file of notes is getting fatter and fatter. Oh, and the antihistamine often causes weight gain, too! I know why. It leaves a terrible metallic taste in your mouth. I've avoided eating constantly to eliminate it by keeping a supply of Tic Tacs handy. 

Well, that is the latest from Tick Woebegone. 

Aleta

[jbeany]

Well, that is the latest from Tick Woebegone. 
Aleta

 

[MaryJoe]

Aleta, I'm so sorry the issues with the spirochetes are still in the membrane surrounding your brain, and that you had to suffer through another headache.  I know it must have been very discouraging to discover that the first round of antibiotics didn't get rid of all of them.  Maybe the first onslaught weakened them and round two will finish them off!   

Or ...maybe your doctor will be giving the 2 week course of antibiotics with a rest, to prevent C-diff, then another round of antibiotics to finish the little buggers off!   

On the other hand it is possible that I have no idea what I'm talking about, and am just grasping at straws.

At any rate I hope you at least got to enjoy your vacation time before you found the tick bite!!

[willowtreewren]

Ha! Time for an update.

I've been both busy and wiped out.

At the end of that last 14 days of antibiotics I tried going off the antihistamine to see what my head would do. WHAM! 

So I called my neurologist and she prescribed another three weeks of antibiotics. So, I had a pretty good July, which was good because I was teaching my last summer course. But the antibiotics ran out on July 23. And on August 6 the freaking headache was back. ARGH!!!! And worse than ever.....

I had had a follow-up with my neurologist on July 30. She had me do labs. When I called to find out what the labs were I told her about the return of the headaches. Well, she said that I would need to come in for her to go over my labs with me. That appointment was today.

Here is the really good news..... She is putting me on IV antibiotics. As soon as the home health team sets me up, I'll be able to do that at home. It will be about an hour a day. They figured that I could handle it at home after being a care partner for my husband's dialysis. So, there you have it. Dialysis was good for something.

 

Truly, though. I'm really tired of this headache. Nothing puts a dent in it anymore.... So I'm looking forward to that IV regimen, and hoping that it puts this Lyme Disease to bed.

Aleta

[jeannea]

I hope it helps. I went home once with a PIC line. Make sure they put the extensions on so you can reach everything better. If your hand or arm swells up that could be a clot so you need to call someone. I hope you feel better soon!

[Traveller1947]

So good to have an update!  I keep thinking of you and praying for youand telling myself no news is good news, but that isn't really the case I see.  I'm glad you have a neurologist who's listening and that you'll be getting IV antibiotics.  All the best to you, as always.