I Hate Dialysis Message Board
Off-Topic => Other Severe Medical Conditions => Topic started by: willowtreewren on April 03, 2012, 08:42:01 AM
-
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. :bow; 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. :puke;
Isn't life interesting? :rofl;
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. :rofl;
Aleta
-
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.
:rofl; :rofl;
-
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.
:bestwishes; :grouphug; :grouphug; :grouphug;
-
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!
-
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
-
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!
:rofl; :rofl;
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. :2thumbsup;
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. :2thumbsup; But believe me, I will not push it.
Aleta
-
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.
-
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.
-
I'm still "resting" but not too happy with it. :lol;
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. :thumbdown;
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. :rofl;
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. :rofl; 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.
:rofl;
At least there were no passing out incidents! :2thumbsup;
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
-
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
:kickstart;
-
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!
:rofl;
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
-
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!
-
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.
-
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!
:bow;
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.
:pray; 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
-
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.
:clap; :2thumbsup;
MJ
-
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?
-
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.
-
Aleta, I hope that they sort this out soon for you.
-
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. :grouphug;
-
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 :rofl;) 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. :banghead; :banghead; :banghead;
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! :rofl;
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. :clap;
Well, that is the latest from Tick Woebegone. :rofl; :rofl; :rofl;
Aleta
-
Well, that is the latest from Tick Woebegone.
Aleta
:clap; :clap; :clap;
-
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! :boxing;
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! :Kit n Stik;
On the other hand it is possible that I have no idea what I'm talking about, and am just grasping at straws. :waiting;
At any rate I hope you at least got to enjoy your vacation time before you found the tick bite!! :rofl;
-
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! :Kit n Stik;
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.
:rofl; :rofl; :rofl;
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
-
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!
-
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.
-
oh boy wtr,+1 ;) You have really had some pains your way. Im so sorry and when i just started reading this, i got so worried that it was going to be effecting YOUR kidneys.. What a horrable slap that would be. And, on the other hand, i do know the horrors of headachs!!!!!!!!! Im good now for years actually, but i had menningites and that started with major headach, and then siness crap o la... which may not even touch the pain your having. Im so glad your getting help, and YES, homeD was good for something :2thumbsup;
Hope all else is going well for you so you can comfortably take care of yourself. Best wishes,,, and :pray; <---( cant help it,,, thats what i do ;) )
-
Thanks for the kind wishes... :cuddle;
I kind of slog through each day.
Aleta
-
:grouphug; :grouphug;
-
I really hope that this will work for you Aleta,
lots of luck, and love Cas
-
Gah, what's all this??? Aleta, I hate to hear about all this nonsense you've been going through with ticks, headaches and so on.
Hoping with big hopes that the IV works.
:flower;
-
I started my treatment today. I felt like I better not be a wimp over that "tiny" needle being inserted.
:rofl; :rofl; :rofl;
They will come back out to supervise the treatment tomorrow, then Monday and Tuesday I'll be on my own. On Wednesday they will have to change the needle. That gets done every four days throughout the treatment.
I EVEN get heparin!
I feel really confident that this will finally kill the infection. The best part is knowing that I have a doctor in my corner. I have also started using SuperBetter.
I heard about it through a TED talk and it has really given me (or helped me find) strength.
superbetter.com (http://superbetter.com)
I think that SuperBetter might be a good resource for dialysis folks! Maybe I should start a new thread! :2thumbsup;
Aleta :2thumbsup;
-
I went to the link. Now I want to try it! I thought you were probably talking about a vitamin but this looks great!
-
Here is my next update!
First of all, the IV Rocephin has really kicked my :sir ken;
I had hoped it would be kicking the Lyme disease. :rofl; :rofl;
I do take it as a good sign. After one week of treatment I'm seeing very limited (and I DO mean VERY) improvement. I'm still experiencing the constant headaches. The improvement is that I can tolerate them with only Naproxen now instead of Naproxen AND Tylenol.
I called my neurlogist this morning about extending the treatment. Lyme disease is kind of like dialysis. Those not in the community have no idea what the challenges are, with the biggest one finding a physician who will actually TREAT it. I have been very fortunate.
So this morning by phone, my doctor agreed to all of these things:
1. allowing me to get a PICC line so this silly IV access doesn't need to be changed every few days.
2. Extending my treatment so we don't just kill off the weak spirochetes allowing the strong ones to proliferate.
3. Sending my blood work to a lab in California that specializes in tick-borne diseases.
It is very rare to get physician cooperation with #2 of those items. As I said somewhere, maybe here, I am fortunate that the buggers went after my brain. Infectious disease docs will usually not consider these steps, let alone the IV Rocephin!
In the mean time, I'm missing lots of work because I'm too weak to go! I am missing the last of the swim season here, because I have this port in my arm. But the most important thing is that I get this treated before I have permanent brain damage. Talking is such a challenge. Phone conversations are the worst!
But I WILL get better, especially with all the support I have been getting from friends and family!
Aleta
-
Glad to hear you have such a great doctor! A PICC line will be easier. I had assumed that was what you were going to get. I hope this really helps you.
-
Jeannea,
I have really gotten lots of help staying positive by utilizing the SuperBetter "game." I hope you enjoy it. :2thumbsup;
Aleta
-
:grouphug;
-
Jeannea,
I have really gotten lots of help staying positive by utilizing the SuperBetter "game." I hope you enjoy it. :2thumbsup;
Aleta
I've enjoyed SuperBetter, and I hope you find it helpful.
I am so sorry that you have been having such a rough time of it. It must all be quite frightening. I can't imagine what life would be like with a constant headache. That must be awful. I hope you get better really soon. :cuddle; Please give us as many updates as you can manage.
-
I've enjoyed SuperBetter, and I hope you find it helpful.
I am so sorry that you have been having such a rough time of it. It must all be quite frightening. I can't imagine what life would be like with a constant headache. That must be awful. I hope you get better really soon. :cuddle; Please give us as many updates as you can manage.
MooseMom, I don't think I would be doing as well as I am without SuperBetter. Despite being weak and unable to talk well, I continue to FEEL like a fighter because of SuperBetter. I'm glad you enjoy SuperBetter, too.
I'm sleeping quite a bit lately, but I imagine that is what my body needs to fight this infection. I'm looking forward to the time that I can go a whole day without a headache. :2thumbsup;
I'm also looking forward to being able to work for a whole day. I have only been able to do a couple hours here and there.
I get my PICC line on Monday. That will make life a little simpler. I won't have to have the IV changed out every couple days. :clap;
Onward..... I'm fighting. And hopefully winning. I realized last night that my headache was perhaps not as bad as it has been. I'll take that as a step forward.
Aleta
-
I'm very happy for you that the treatment is helping a bit. I hope the extention of the treatment will really knock it down. And after all these positive mails about that SB site, I'll check that out too.
Hang in there girl, lots of love Cas
-
Yes, please, start a post about SuperBetter. I'm curious what it's all about, but I hate signing up for things without knowing about them in detail.
-
That's funny. I thought I HAD started a thread about SuperBetter, but now I can't find it.
I guess I (super) better do that now!
Here is the link to that thread (which I renamed to make it easier to find!).
http://ihatedialysis.com/forum/index.php?topic=27317.msg436911#msg436911 (http://ihatedialysis.com/forum/index.php?topic=27317.msg436911#msg436911)
Aleta
-
Glad to see that you are taking care of yourself - Lyme disease is pretty nasty. I'll be sending healing thoughts in your direction. :grouphug;
Anne
-
A brief up-date:
I have an appointment with my neurologist tomorrow to go over the labs that were done by IgeneX in California. Since insurance won't cover sending labs out of state, that set me back $1300. Wheeeee.
But in the mean time, Carl rushed me to ER yesterday with chest pains. All manor of tests and an overnight stay at the local spa, er...hospital did not turn up any heart disease. Before discharging me today he kind doctor shrugged his shoulders and said the chest pain was probably Lyme related and I shoud follow up with my PCP or cardiologist.
A spinal tap is scheduled for September 27 (the earliest they could do it!).
So, that's the news from Lake Woe-be-gone.
Aleta
-
Yuk! Why are you having a spinal tap? Is that cardio related? [confused face] [oh, like this one:] ???
-
Spinal tap? Oh you poor thing. Just the thought is bad. I'm glad you didn't have a heart problem.
-
Oh no, spinal tap, I'm so sorry for you Aleta, lots of hugs, and love Cas
-
Ah, I realized that I hadn't really given an accurate update!
I was on Rocephin for 2 weeks and have been off for 2 weeks. Everything has gone downhill in the past two weeks as the disease has come back with a vengeance.
The spinal tap is to check for spirochetal DNA in the spinal fluid. They do not show up in blood too easily as the spiral configuration of the bacterium draws them into denser body parts. That is why they "attack" the organs and large joints. My knees at this point are causing me lots of problems. I sure wish I could get my doctors to work as a team!!!!
Seeing the neurologist (headaches and brain fog) later this morning.
Aleta
-
lots of luck Aleta, I'll be thinking of you
love Cas
-
:grouphug;
-
:waving; Hi Aleta! I was just dropping in to see how you are doing. I'm so sorry the Rocephin does not seem to have really done any thing but keep the Lyme at bay, and that only while you were on it. I'm hoping your neurologist will have more helpful ideas about improving the headaches and brain fog. I don't know how you manage to stay so strong and positive through all the pain and complications Lyme keeps throwing at you. I hope the spinal went well (as well as having a tap can go!) and I'm sorry to hear that your knees are now under attack by the spirochetes. At least they ruled out heart disease. Sheesh, one step forward...well, you know.
Positive thoughts :cuddle;
-
Sorry to hear that this is being such a bugger. Hoping you start feeling better real soon. :cuddle;
Anne
-
Hi WillowTreeWrenWinter
I just read your post in another thread http://ihatedialysis.com/forum/index.php?topic=15510.msg439818#msg439818
What I left out of the previous post is how Lyme has affected my life and the cost it has put upon the health care system:
Before April 1, I was a healthy, active adult, working full time and running two businesses. I am now home-bound, barely able to walk, at stage 3 kidney failure, signs of heart disease and possible COPD (all because of the Lyme disease that insurance doesn't want my doctors, or any doctors, to treat). I was hospitalized with chest pains last week after trying to spend a day at work. I only made it until 10:30 before collapsing and being taken to the ER.
If my business fails because I cannot be there to run it, all my employees will lose their jobs.
How's that for penny wise and pound foolish? Insurance will pay for the treatments against the kidney failure, heart disease and COPD, but not the infection that is causing them!
This is a nice summary of a shocking state of affairs. I'm glad you are still kicking the butt of things, keep that up!! Evidently SuperBetter is standing you in good stead. On the other hand, this is totally :banghead;
-
Yes, I'm 5 days into my second round of Rocephin. If I thought is kicked my butt last time, I was way off base.
This stuff is VERY strong, especially now that I'm on twice the strength as what I got last go 'round. I convinced my neurologist that if 1 gram/day didn't knock the buggers out, then we should try at least 2grams/day. LOL. It has really knocked me out.
I have to rest after eating, rest after getting dressed and rest after a 5 minute conversation! We started out going to the hospital each day for the treatment, but after three days of that I knew I couldn't keep it up. I was so exhausted after each trip I nearly collapsed. So I'm back to home treatments!
I DO feel a wee bit better today. I'm less light sensitive (I was so cool wearing dark glasses inside! 8) ), I can more a bit faster (shuffle + speed instead of shuffle -)
But the worst news is that no matter how successful this round of treatment is, insurance has all doctors' hands tied and this will end my treatment.
Not to worry. I'm a :boxing; :boxing; :boxing;
There are 6 states that have passed laws making it illegal to limit treatment of Lyme. My daughter lives in one. Ironically, that is where I caught it! If necessary we will pull up stakes and move there sooner rather than later. Or I might move there for treatment.
Or we might sue the insurance carrier (if tests show after this treatment that I still have living Lyme in my system). I will NOT give up.
Aleta
-
Keep at it Aleta! geesh, im so sorry for it all! what a horrable horrable thing all the way around... :grouphug;
-
Stay strong, and keep fighting girl :boxing;
and lots of love Cas
-
Time for an update:
I am slowly regaining strength now that I am into my second week of treatment. Home health left a little while ago and they brought a full 7 more doses of antibiotics when it was supposed to be only four! You can bet your bottom dollar that I will go ahead and use those doses. I am NOT going to complain that the pharmacy screwed up. No Way!!
On another front, I finally got the lab results back from California, the ones I paid $1300 to have done. They DO show Lyme disease. On the down side, the results do not meet CDC protocols. No matter. I'm having a spinal tap tomorrow that will also show that I have Lyme.
I'll be able to take these results to whatever Lyme doctor will see me.
In preparation for my spinal tap (LP) I had to cease taking Naproxen. So, the headaches are an issue now. I needed to do that experiment anyway. I'm glad that there was a reason to have the headaches and not just because I was trying to see if I would still have symptoms without the pain meds.
I do have to confess that I am feeling apprehension over not knowing what hoops I will have to jump through or how long I will have to wait to see a Lyme doctor in another state. I've started the process. I do so want my life back....
I got a bundle of get-well cards from my students yesterday. That was so sweet. One of the moms at school is taking me to the hospital tomorrow. Her son washed the car so I would have a "clean ride." That caring gesture made me cry.
Well, that's the news from Lake Woe-be-gone as in "woe, get out of my life!" :2thumbsup;
Aleta
-
I am surprised that they let you take naproxen, given that it is a NSAID. maybe it's because you are already ESRD and the horse has already bolted on the preserving the kidneys front.
-
Amanda, I am limited on what I can take for the debilitating pain.
BUT I HAVE MORE NEWS!!!!!!!
Yesterday, I emailed a Lyme Guru in New York State to see how long their waiting list is. They called me back today. And they will see me on MONDAY!!!!
As I knew, it is VERY important not to keep starting and stopping treatment, because it kills off the weak spirochetes and lets the strong ones reproduce.
So they wanted to get me in before I finish this round of Rocephin. My airline ticket was only (gasp) $1100!
My first visit will be $640 and I will have to go for bi-weekly follow-ups at $175 each until I'm OVER this!!!!
But I have been crying all afternoon saying "I am going to get Well!!" I did not realize how upset I had been about this whole thing until I could see the light at the end of the tunnel.
Aleta
-
:boxing;
Go girl!
-
:clap; Spectacular news! I'm so glad you will be able to see the Lyme specialist before this round of antibiotics is finished.
Keep fighting! :boxing;
-
Great news!!! there is a ............................. light at the end of it all isnt there ;) Sending my best and will be soooooooo happy to hear of success!!
-
Oh Aleta, that's just wonderful. What a relief! I can't wait to hear your report on your appointment on Monday. I can't think of a better way to spend your money. I know it is a lot, but if it leads to you getting your life back, it will be worth every penny.
I am so hoping that the light at the end of the tunnel continues to shine brightly. I know this has been a terrible ordeal for you. I hope it will end soon. :cuddle;
-
great news, Aleta
-
Thank you, thank you, everyone.
My Lumbar Puncture (spinal tap) went without a hitch today. I had upped my consumption of coffee over the past few days to increase the production of spinal fluid. I have a headache, but HEY! I had a headache before the LP!
:rofl;
I take an active role in maintaining a positive outlook, and I can honestly say that I have been mostly successful during this battle with Lyme.
But then today I realized that I am feeling not just positive, but actually HAPPY! :2thumbsup; :yahoo;
I had been missing that. It is the difference that real hope makes.
I WILL update after I see my Lyme guru on Monday. I am just so thankful that my dear daughter went around asking all her friends who had been treated for Lyme who they saw.
Aleta
-
I am patiently waiting for your update!
Also, if you don't like this Lyme guru - Mass General in Boston has one also (that's who we want my SIL to go see since he's only 45 min away)
I am sure you're exhausted but I am going to keep checking back. My SIL isn't improving too much but I liked those links you sent me, and I also like hearing your updates, so I have ideas to pitch **evil laughter**
-
It has been a while, so I need to give you an up-date! :2thumbsup;
The trip to New York went well. I was with the doc for almost 2 hours going over previous treatments and symptoms. He did everything but stand on his head trying to find a way to prescribe an extension of my treatment so I could do it at home and not have to move to New York! He even waited while I called Carl who had to drive home from work to look at the label on the medicine in the fridge. I have NEVER been treated with so much respect, patience, and compassion by someone in the medical profession.
The doc talked with the home infusion pharmacist at the hospital who was going to get in touch with others in Tennessee to see if my treatment could be arranged under the auspices of the NY doctor. I left his office late in the afternoon not knowing what the outcome would be.....
Tuesday morning I got up early and flew home. When I reached the airport I called Carl and he picked me up just as I made it out to the curb. He took me back to school with him. The kids were wonderful. They were hugging me and squealing. They had really missed me. It had been tow weeks since I had seen them. After the greetings were over I went into the office and called the pharmacy.... I talked with the same pharmacist who had spoken with my doctor. And she said that everything was worked out. Home Health would deliver 2 weeks of treatment to me at home the next day and discharge me. Instead of working through home health, I'll be an "infusion only" patient. From now on, I'll pick up my supplies each week at the pharmacy. I broke down and cried again. You would think I'm prone to crying, but I'm not really. This has just been a very emotional ride.
And how am I feeling?
Well, I worked all day Friday! Well, almost all day. I DID have an appointment with my neurologist (who had to "approve" the extension of my treatment). That appointment went well, too.
My headaches are getting better. I no longer have to take Naproxen for them. The light sensitivity is better. My speech is better. And my stamina is WAY better. I'm not all the way back, though. At times I can hardly walk because the spirochetes are in my knees. They are in the joints of my fingers, too. That's a pain.
I still get worn out, and when I do, I get a headache. So I have to be careful not to push too hard.
This week we are off from school for Fall Break. We are driving back up to Massachusetts and I have another appointment with my Lyme doc on Friday. We will decide whether to extend my treatments for another two weeks. I'm guessing they will be extended. I asked him how we will know when to stop, and he said when I'm all the way back.
So, folks, I'm getting better. Bit by bit, I'm getting better.
:cheer:
Aleta
-
Sounds like a great doctor! I hope this treatment really works.
-
Yay! I am so glad for good news!
I assume this Lyme doctor is in the Albany/Upstate area? I may have to look him up for my SIL if she doesn't start taking better care of herself.
-
Very, very glad to read such positive news.
Great to hear you are getting better.
well done girl, :cheer:
lots of love Cas
-
:clap; Oh, Aleta< what wonderful news! I'm so happy that you finally found a doctor that will listen to you and work with you. It sounds like he understands how frustrating living with Lyme can be. I think those stubborn spirochete's days are numbered. Great news about the headaches lessening, also! :2thumbsup;
-
So glad things are looking up for you, Aleta! The right doctor and a positive spirit can do wonders--sounds as you have both...All the best to you, as always.
-
I'm thrilled that you are definitely seeing the light at the end of this particularly long tunnel!
As for the crying, you know, when a person has been under stress for such a long time, any small modicum of relief from that stress can cause a flood of tears. At least, that's been my experience. So far from thinking you are prone to crying, the opposite is true. That stress just builds and builds over time, doesn't it. And then there is a small break in the dike, and here come the tears!
I'm eager for your next update!
-
I hope things keep improving. The NY doc sounds like a very good resource!
-
Time for another update!
I will be flying up to New York again tomorrow. This time I'll fly into White Plains and rent a car for the 25 minute drive to my doctor's. I'll drive back to the airport in the afternoon and fly home again tomorrow evening!
Two weeks ago I got held up in all that Sandy mess. My flight out of Albany was canceled and I ended up staying an extra day and a half before I could get another flight. I am glad I took an extra treatment with me! On the plus side all the schools were closed and I got to spend some quality time with my daughter and grandchildren.
Two weeks ago my doctor added a second antibiotic to my treatment. The improvement in my symptoms had stalled out, and he felt this might get it rolling again. :o
Oh, I DO have to tell you about that visit! It was scheduled for 11:10 AM on the morning of Monday, October 29. To be on the safe side, I called the doctor's office at 8:00 AM (before office hours) to see if the office had been closed due to the hurricane. Imagine my surprise when my doctor answered the phone! He said to get there ASAP. I was already in the car and told him I would be there in 2 hours. I was further surprised when I arrived at the clinic to find that my doctor was the only one there. He was handling reception, blood pressure, taking payments....in short, he was doing it all. I was in and out in less than an hour and found myself heading back to Massachusetts before the actual time of my appointment!
I have to say that I really liked my doctor before this visit. I LOVE him now. How many doctors would hold down their office alone? That is dedication! He said that he lived near the clinic and didn't want his staff to risk getting out in the worsening conditions!
Anyway, with the double duty on antibiotics my neurologic symptoms are almost GONE! :2thumbsup; :2thumbsup;
As a test I suspended taking my antihistamines on Thursday so I could see if the headache would come back. I can barely tell that I have a headache! This is amazing, considering that I have been suffering with severe headaches since APRIL!
The Lyme arthritis is still bothering me. But even that is getting better. :clap;
Two weeks ago my doctor said that we would eventually stop the IV treatments and continue the oral antibiotic for a while. I have a feeling that will happen fairly soon. I am so encouraged by how much better I feel. I have my stamina back and I've been working some long days, including two trips to Kentucky (4 hours each way) this past week, with no ill effects.
Onward! :2thumbsup;
Aleta
-
This is great news Aleeta. I'm so glad to hear this disaster-time is coming to an end.
love Cas
-
Onward, Aleeta and ever upwards! :cheer: :cheer:
-
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.
-
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! :yahoo; :yahoo; :yahoo;
-
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!
:2thumbsup;
Aleta
-
Sending best wishes for good news tomorrow :flower; :grouphug;
-
great news
-
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
-
Congrats Aleta, glad to hear some more good news.
Keep strong, and fighting fit, love Cas
-
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.
-
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. :2thumbsup;
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?
:clap;
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. :yahoo;
Someday soon..... Someday soon.....
Aleta
-
so glad to hear all that. Don't overdo it though.
love Cas
-
Oh, this is just superb! You are trouncing Lyme Disease and an insurance company is actually doing what they are supposed to do. :yahoo;
-
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! :o
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.
:Kit n Stik;
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. :2thumbsup;
I'm feeling pretty normal, and now it is just a matter of making sure we get everything completely knocked out. :boxing; :boxing; :boxing;
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
-
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
-
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! :cuddle;
-
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)?
-
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. :rofl;
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.
:rofl; :rofl; :rofl;
Aleta
-
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.
-
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. :boxing;
Aleta
-
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. :P 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.
-
Do the probiotics help?
Hi, MooseMom. You are a scream! :rofl;
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 :urcrazy; :urcrazy; :urcrazy;
:rofl;
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
-
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. >:(
-
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!
-
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 :twocents; know that i do think of you and am wishing for a full recovery.
s
-
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.
:rofl;
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. :rofl;
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! :urcrazy;
Aleta
-
A "herx" reaction? Did you just make that up? :P
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.
-
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.
-
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. :rofl; :rofl;
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
-
:waving; 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! :boxing; I think Lyme's (and all the other stuff) has met its match!
:cuddle;
-
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! :thumbup;
-
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!
-
Mary Joe, I'm a fighter, all right! :boxing;
MooseMoo, Carl and I have talked about how we have changed places. :urcrazy; 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! :bow;
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. :rant; :pray;
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. :2thumbsup;
Aleta
-
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
-
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!!!
-
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.
-
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!
:boxing; :boxing; :boxing;
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/ (http://[url)[/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.
:2thumbsup;
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. :rofl;
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
-
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....
-
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
-
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 ;D
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. :urcrazy; 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. :(
-
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!!!
:flower; :cheer: :flower; :cheer: :flower;
-
Thanks, Cariad. :cuddle; :cuddle;
-
Time for another update. :bow;
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! :2thumbsup;
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. :thumbdown;
But the second one..... :cheer: :cheer: :cheer:
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! :banghead; 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.
-
:clap; 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?! :waiting; 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!
-
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. :rofl;
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."
:rofl; :rofl; :rofl;
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! :2thumbsup;
Aleta
-
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 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. :rofl;
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!!! :thumbdown;
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
-
How are you doing Aleta?
Love, Cas