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Old 06-12-2012, 10:22 PM   #1
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Very concerned about a friend with late/chronic Lyme

I have a friend who is 60 years old and was bitten numerous times over several years by tics up in the Vermont area (many years ago).

He has had too many bouts and attacks of Lyme since to count, but usually he has been able to fight them off without antibiotic treatment. Generally they will start with vagueness, a feeling of detachment, inability to think properly, immense fatique, and then within a few hours there will be a low grade fever, shivers, and the joint aches start (generally in hands, wrists, knees, ankles). Sometimes he will experience digestion issues too, but not every time. After about 2-3 days this will pass on its own.

However, the last bout was a few months ago and he had to go on oral antibiotics. It was a more severe attack and after about a week of the mild symptoms worsening, he agreed to go on the medication. It helped though it took quite a long time to clear up, and even after the course of antibiotics was complete, some symptoms seemed to remain, and actually never seemed to quite disappear entirely.

In the current instance, he was fine Sunday during the day. Late Sunday afternoon he fell asleep while doing a BBQ dinner and when he woke up he felt terrible and could not stay awake. He felt dizzy, disoriented, detached from reality, and exhausted. He went to bed.

This was the last I heard from him. We are on opposite sides of the planet (him US, me Australia), but we ALWAYS text and email and live chat frequently, without fail. So when I had still not heard anything from him on Monday morning, I was very worried because it had been 24 hours and I knew he was not well.

I found out later that he was in the hospital receiving IV antibiotics for this bout of Lyme. We can't have any contact while he is in there, which is driving me crazy, but I guess I can't do anything about it.

So my questions are...

1. How likely would it be that he will be on initial IV meds in the hospital in bed, and then be released and continue the meds as an out-patient? I mean, they recommend the IV antibiotics for up to 6 WEEKS. Surely they wouldn't keep him in there for that long as an in-patient!

2. How likely will it be that every future bout of Lyme he gets will result in this? (requiring hospitalisation)

3. At 60, and having had Lyme in his system since his 20s, is this a really bad thing for his prognosis and the likelihood of him being ok in the future? What if one day even IV antibiotics don't work? Can you actually DIE from Lyme?

Thanks for listening.

 
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Old 06-13-2012, 12:54 AM   #2
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Re: Very concerned about a friend with late / chronic Lyme

1) Yes, they can do IV antibiotic treatment on an outpatient basis once he is stable. They can either put in a picc line and do the antibiotics at home, possibly with help from a visiting nurse, or he can come to an infusion center. My friend caught Lyme, and it wasn't diagnosed at first, so she had to have antibiotics through a picc line for quite a while. She wasn't hospitalized, though.

2) IF this round of antibiotics clears the infection, he won't have more bouts unless he is bit again. If not, he'll have to stay on top of things, to identify a bout and get on antibiotics quick.

3) It really depends on how the infection has affected him. There's no use speculating until you have more information. Still, my grandfather at age 85 caught lyme and babesiosis (another tick disease) at the same time, and he recovered and lived to 98.

 
Old 06-13-2012, 02:23 AM   #3
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Re: Very concerned about a friend with late / chronic Lyme

It appears that he is not being treated by an LLMD - lyme literate medical doctor - because an actual lyme specialist would not treat for only 6 weeks, especially with chronic, late-stage lyme! It is imperative that he seek out this type of lyme specialist ASAP; otherwise, it is very unlikely that he will not have further issues. Sad but true. You might read the post at the top of this board titled "lyme newbies" for further information. What is on his side is having a caring friend like you in his corner.

All the best with this,

Jen

Last edited by jenj770; 06-13-2012 at 02:24 AM.

 
Old 06-13-2012, 11:13 PM   #4
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Re: Very concerned about a friend with late / chronic Lyme

Thank you so much for your replies.

It brings me some comfort to even just to be able to talk about it with someone...

Oh, and I actually don't know if he's having IV treatment for 6 weeks, 1 week, 6 months, or what. I have no idea because he cannot talk to me in any way, shape or form while he is in the hospital.

It has been 4 days so far, and he is still at the hospital...the only way I know he is even still alive is because I go on this particular website he frequents and it tells me how long ago he was logged in. It is the only "contact" I have with him while he is in there.

Would someone typically be considered stable after this long? Why is he still in the hospital? I am growing more worried by the day.

He has never had IV treatment for any of his previous bouts of Lyme. He has sometimes had oral antibiotics but that's it. And it always comes back, usually about 4-5 times a year, though never this severe.

 
Old 06-14-2012, 06:24 PM   #5
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Re: Very concerned about a friend with late / chronic Lyme

Sigh. No further responses. Sorry to be impatient...I just need anything at all to help me feel a bit more reassured.

He is still in the hospital as far as I know. Beginning of day 5 for him now. Surely he'd be stable by now??

When we had talked about the possibility of him getting heavy duty IV meds for his Lyme previously, he always was very much against it because he said it would mean he'd be in the hospital for 4-6 weeks or something, and he did NOT want to do that. So...WOULD they keep him actually in hospital for that long?? Is that possible?

He was on a laptop sometimes during the first 2 days he was in hospital, but he hasn't been going on any of the websites he usually does over the past 2-3 days...I am so worried something horrible has happened to him.

 
Old 06-14-2012, 06:35 PM   #6
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Re: Very concerned about a friend with late / chronic Lyme

You know, you could call the hospital and ask. They can't tell you much, but if you give the patient's name, they can probably tell you what his "one word condition" is, such as good, fair, serious or critical.

 
Old 06-15-2012, 04:18 AM   #7
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Re: Very concerned about a friend with late / chronic Lyme

You know...I wish I could.

I am in Australia. He is in America. He lives in New Jersey (I do know the address specifically, but that doesn't help me). I actually went so far as to look up hospitals in New Jersey but there are SO many. I wouldn't even know where to start.

I also read that they are legally obligated NOT to give out ANY information about patients unless you have been previously permitted to be told that information or unless you are family.

I am not his family...sadly. We want to be, but...technically we are not.

I am not even known to exist by anyone in his everyday life over there...and nor is his existence known to anyone in my everyday life over here.

Even if I did somehow locate him and called and they did tell me how he was, I'd be worried that they would tell his partner...she does not know about me.

It is very, very hard for us normally, and now this...is unbearable.

 
Old 06-24-2012, 07:32 PM   #8
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Re: Very concerned about a friend with late / chronic Lyme

Well, my friend came out of the hospital last Sunday. He was told he had to be back within 45 days for prolonged treatment. He is very weak, cannot really do much. Sleeps a lot. The Lyme got into his heart muscle this time and although he was in the hospital for a week on IV medication, that seemingly didn’t help.

The only reason he came home was because he had to try and work out how to pay the $15-$20k before being able to go back to hospital.

Now he has managed to get on his partner’s insurance (he actually had to get married to do this. He only got married for this specific reason, a few days ago. I find that sad) so will be going back to hospital as soon as possible.

He has said it will take a very long time for him to get better and he has been told he will always have Lyme problems that will require hospitalization and serious medication like this. Is that normal? It sounds a very bleak prognosis to me.

 
Old 08-08-2012, 07:24 PM   #9
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Re: Very concerned about a friend with late / chronic Lyme

Well, I’m back with updates.

Back when I last posted in this thread, my friend was in the hospital and I didn’t know what was going on.

It turns out he was in there for 6 days, on IV meds for the Lyme. They did blood tests which showed high Lyme levels. They initially thought it was in his heart but then they weren’t sure because his heart seemed fine and is still fine. So I guess that’s something.
After he left the hospital they told him to come back within 45 days for prolonged treatment, which they said would be a further 2 weeks in the hospital followed by a one month regime of drugs as an out patient. This seems WAY too short for me, considering he’s 60 years old and has had Lyme in his system since he was in his 20s. He HAS been treated before for Lyme, with oral antibiotics, several times, and felt fine afterwards, but obviously the treatment wasn’t enough at the time, OR (as the doctors think) he must’ve been bitten again more recently. He does not recall being bitten, and has had no rash, but he does take walks in woodlands near his New Jersey home, so it’s obviously a possibility.

Anyway, so he ended up NOT going back to the hospital, as he was taking 2 different oral antibiotics for 2 weeks after he left, and felt a lot better. So he didn’t want to go back. During those 2 weeks he felt very sick, exhausted, and wasn’t sure he’d make it through.

After that time, he felt better and was able to go for walks / runs again like he used to, work hard days laboring in the heat for 9 hours at a time, make music which he loves to do, etc. Everything was normal, and he felt his body was strong except his mind and vision are not good.

Everything he sees even a short distance away is blurry now. He can still drive but it’s not as clear. He also says his mental acuity is what’s bothering him the most. He finds it very hard to remember things (short term / active memory, not long term) and to maintain any sort of focus on thoughts a lot of the time. He feels like he’s in a fog a lot, especially in the mornings. In the evenings, he feels “toxic” he says, and very achy in his joints.

So clearly, the Lyme is OBVIOUSLY still there. I think he should go back to the hospital for proper treatment, but he says he feels that if he succumbs to their regime after all the hard work he’s put in over the years to get his body strong enough to fight the Lyme by itself with no hard drugs, he will die. *sigh* I wonder if he will end up dying if he does NOT go back and get properly treated (although the doctor said because it's been in his system for so long and is so deeply ingrained, no amount of treatment may actually get rid of it and he may feel worse than he would if he did nothing)

When he went into the hospital almost 2 months ago, he was taken there by ambulance. That’s how serious it was. I think even if he feels “acceptable” now in terms of his health, one day soon he’ll be back in that ambulance again from this Lyme.

Any thoughts?

Thanks for listening.

 
Old 08-08-2012, 07:29 PM   #10
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Re: Very concerned about a friend with late / chronic Lyme

Well, Iím back with updates.

Back when I last posted in this thread, my friend was in the hospital and I didnít know what was going on.

It turns out he was in there for 6 days, on IV meds for the Lyme. They did blood tests which showed high Lyme levels. They initially thought it was in his heart but then they werenít sure because his heart seemed fine and is still fine. So I guess thatís something.
After he left the hospital they told him to come back within 45 days for prolonged treatment, which they said would be a further 2 weeks in the hospital followed by a one month regime of drugs as an out patient. This seems WAY too short for me, considering heís 60 years old and has had Lyme in his system since he was in his 20s. He HAS been treated before for Lyme, with oral antibiotics, several times, and felt fine afterwards, but obviously the treatment wasnít enough at the time, OR (as the doctors think) he mustíve been bitten again more recently. He does not recall being bitten, and has had no rash, but he does take walks in woodlands near his New Jersey home, so itís obviously a possibility.

Anyway, so he ended up NOT going back to the hospital, as he was taking 2 different oral antibiotics for 2 weeks after he left, and felt a lot better. So he didnít want to go back. During those 2 weeks he felt very sick, exhausted, and wasnít sure heíd make it through.

After that time, he felt better and was able to go for walks / runs again like he used to, work hard days laboring in the heat for 9 hours at a time, make music which he loves to do, etc. Everything was normal, and he felt his body was strong except his mind and vision are not good.

Everything he sees even a short distance away is blurry now. He can still drive but itís not as clear. He also says his mental acuity is whatís bothering him the most. He finds it very hard to remember things (short term / active memory, not long term) and to maintain any sort of focus on thoughts a lot of the time. He feels like heís in a fog a lot, especially in the mornings. In the evenings, he feels ďtoxicĒ he says, and very achy in his joints.

So clearly, the Lyme is OBVIOUSLY still there. I think he should go back to the hospital for proper treatment, but he says he feels that if he succumbs to their regime after all the hard work heís put in over the years to get his body strong enough to fight the Lyme by itself with no hard drugs, he will die. *sigh* I wonder if he will end up dying if he does NOT go back and get properly treated (although the doctor said because it's been in his system for so long and is so deeply ingrained, no amount of treatment may actually get rid of it and he may feel worse than he would if he did nothing)

When he went into the hospital almost 2 months ago, he was taken there by ambulance. Thatís how serious it was. I think even if he feels ďacceptableĒ now in terms of his health, one day soon heíll be back in that ambulance again from this Lyme.

Any thoughts?

Thanks for listening.

 
Old 08-11-2012, 06:10 PM   #11
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Re: Very concerned about a friend with late/chronic Lyme

Antibiotics do not weaken the body's natural defenses, that's just not how it works. If anything, short and ineffective courses of antibiotics will only provoke bacterial resistance, thus strengthening the infection.

If he really hates the hospital, he might be able to have a PICC line installed or go to an infusion center, so he doesn't have to be hospitalized the whole time.

 
Old 08-12-2012, 06:32 AM   #12
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Re: Very concerned about a friend with late/chronic Lyme

Susie, it would help you to read over a couple threads, up above, "How To Share LLD Names" and "Lyme Newbies"
It would be a good thing for your friend to get to a Lyme Specialist, and start on treatment. Whether that is through antibitocis, or alternative or both combined. Which is what I chose to do. A week of antibiotics will not do him any good. One of the main keys to all of this, is to get the immune system up. This means, we have to eat as best we can, take supplements and detox. It is all very important, and there is NO magic pill to take, to rid of it quickly, it all takes a lot of hard work on our part.

He really needs to get to a doctor that understands about Lyme and any co-infection.

Good thoughts going out to your friend.

Jodie



 
Old 08-12-2012, 11:11 PM   #13
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Re: Very concerned about a friend with late/chronic Lyme

He is very stubborn...I usually find that endearing, but not in this case because it's threatening his health and wellbeing.

He has always thought that his body is kind of "trained" to be able to fight off the Lyme attacks without outside help from antibiotics. He does eat well, but doesn't take supplements or anything. He also pushes his body very hard (he has to for his job, etc). He goes to bed early (by 8.30pm) and gets about 9 hours in bed (gets up early too, for work), but also tends to always wake up in the night and take a while to get back to sleep...

Obviously he wants to feel better, but he really seems convinced that any treatment will just "kill" him, because his body will lose the ability to fight off future Lyme attacks by itself, once he succumbs to antibiotics.

I don't think who he saw back when he was in the hospital was a LLMD. Otherwise surely the suggested treatment of 2 weeks in-patient and a further 4 weeks out-patient would NOT have been suggested?? It's just too short, you know? I guess maybe they meant that was the treatment for THIS particular attack of Lyme, but not to try and rid his body of it in general maybe...

Anyway...he can only afford treatment if it's covered by insurance, and I have heard no LLMD do insurance covered treatment...

 
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