Lyme Discussion

[Purplefox]

Oh my - he is under a ton of stress I am sure... he takes his lyme patients under his wing, and you can only take so much in before you break. I really hope that he isn't getting any sort of pressure from the CDC/government because of how he is treating his lymies... he has made such a positive difference in SO many lives. So Dr. C. if you are reading this, please get better - we need you to keep fighting for us, and for yourself and your family!

I hate to say 'he is too young to have those health problems' because that's what people tell me all of the time when they hear about my medical problems... but I just feel so badly for him. I hate to think that he was ignoring his own medical issues so that he could take care of everyone else's medical issues... but that is how a compassionate mind thinks, I'm sure many of us can relate to that.

And yes I will put in my disclaimer that I do not know what is going on with the good Doc. and that everything I just wrote is my own thoughts/opinions... I do hope that everything is ok, we need him back - and I'm sure that he knows that. If there is any way his patients could send him a get well card, I would appreciate a PM

Amen to that. Doc C is the only doc that actually gave two (you know what's) about what was really going on with me.

Daily and Nightly prayers are going out to him and his family. I know on my next visit I will be bringing him a get well card. Maybe that's the only way to do it? Individually? If anyone comes up with something better, PM me also.... and count me in!

I think it would be lovely to maybe all do something as a group to show him just how much of a difference he really is making for us, and that it is/has/will not go unnoticed!!


Hugs to all my fellow Lymies!!

 

[hotcoffee]

I called the office today.... he won't be back this week....

I do pray he gets better.... He's one of the best doctors in Southern Maryland....

I think my Rx for the IV Meds will run out this week....

I have two weeks oral meds.... and I am out of Motrin 800....

I am going to be up a creek soon.... I'm so sorry he's sick cause I know he would be there if he could.... and on top of that.... now I'm worried about me too....

 

[DoWhat]

I think my Rx for the IV Meds will run out this week....
..

I don't want to sound mean, but you will not die if you don't get your meds.
Actually if you take a couple days off, it could be like a trick on the lyme that is hiding. The bacteria has been noted to go into a remission and hide from antibiotics, and will come back out of it's hiding spot when it thinks it is all safe. That is when you hit it hard again.

Call the office tomorrow, they called in my meds today, but I know the nurses.
PM me if you have any questions. Keep the personal info off the internet.

 

[lisa8439]

I called the office today.... he won't be back this week....

I do pray he gets better.... He's one of the best doctors in Southern Maryland....

I think my Rx for the IV Meds will run out this week....

I have two weeks oral meds.... and I am out of Motrin 800....

I am going to be up a creek soon.... I'm so sorry he's sick cause I know he would be there if he could.... and on top of that.... now I'm worried about me too....

It is probably better that he is home (or wherever) resting - I'm sure if he came right back to the office, he would be under a ton of stress. It's going to be rough on him as it is just trying to play catch-up with all of the lymie med. schedules, let alone all of his other office patients and their medical concerns. We all know what a huge factor stress is on recovery and continued good health, no matter what the ailment... I can't imagine being a doctor and having to walk that fine line between doing too much and not doing enough - and both sides are so subjective that you are bound to upset people one way or the other :sad:

Hotcoffee I second what DoWhat said - it might be just enough to get the really persistent little buggers who've been hiding out to play a bit, then killed off when you start the next round. I'm sure you've had enough antibiotics to kill off some of the lyme so who knows, it might be good for your body to take a break too since those meds are really harsh sometimes. You'll probably get a bit of a herx reaction again when you start back up but I'm sure you'll have a new prescription before your symptoms start flaring up too badly again. I've been out for over a week now with no ill effects - I am getting a bit antsy about getting this co-infection under control since it takes totally different (oral) meds than the lyme and has some different symptoms, but I've waited 10 years to treat it since it wasn't ever caught before so a few more weeks won't hurt And at least motrin is OTC - and this may sound weird, but I've found that pamprin works better sometimes (and no, not for cramps) Personally I'm having more trouble with allergies lately than lyme. Ugh.

When they called me last week I thought they mentioned that he might have another doctor filling in for him for a bit - I wonder if that has changed and he thinks that he might be back sooner? I wouldn't mind another doc or PA filling in since I'm sure Dr. C would choose someone who is at least familiar with chronic lyme and the treatment (that's probably a huge undertaking... I don't know of any lyme literate docs in the state that don't have a huge caseload already. The guy I used to go to on the eastern shore is just swamped, so much so that he even does telephone consults with people from across the country and coordinates care with other doctors in their area who don't know as much about lyme). I just really hope that Dr. C takes all the time he needs to recover and heal - we need him back but as that old saying goes, you need to take care of yourself before you can take care of anyone else... so I hope that he is taking good care of himself. He will still have his loyal patients there when he comes back

Like purplefox said, I'd be in for some sort of 'lyme group' gift too - I'm sure we could get or do something meaningful and well-deserved if we pooled money and/or resources together, but I don't have any 'connections' like dowhat so I'm not exactly sure where to start, aside from a card.

 

[hotcoffee]

Oh please don't misunderstand... I am so very grateful for Dr. C and his courage, knowledge, and willingness to help us all. I am very concerned about him too! Yes I would favor going in on a gift for him..... at least a card.....

I don't want him to rush back to work on my account... I guess that's the point I was trying to make... even while I was writing that post it didn't sound right to me.... I'm actually having a hard time writing these posts these days... use to be I could just tap out a long post and not even have to spell check it.... but now .... not so much... sorry....

I have two weeks of meds.... I have seen the Doc at least once a month since March 2009.... so I bet if I don't go to the office for a few weeks I'll be ok....

If someone else could call in my prescriptions for me and look over the blood tests to make sure my WBC is ok I'd be fine...

Dr. C has been taking very good care of me and I want him to take care of himself....

If the dam CDC would just get up with the times on Lyme he would have plenty of knowledgable doctors ready to help out.... there just aren't any trained or willing when it comes to the Lymies.....

Dr. C has been taking very good care of us and I want him to take care of himself....I want him to take the time he needs to get back on his feet.... firm and steady

 

[lisa8439]

Oh please don't misunderstand...

I knew what you meant - it is obvious that you think a great deal of Dr. C from your posts, so I knew that you obviously want what is best for him in terms of getting better.

I think the fear of not having a 'doctor' around for a bit is the fear of the unknown again, and the worry that when you've made so much progress, you don't want to go backwards. I worry about that too - and like you said, the biggest problem is that lyme is *so* misunderstood that there isn't really anyone qualified to cover for Dr. C while he's out. And that sucks... I'm sure no doctor is going to want to call in prescriptions for heavy-duty antibiotics (intravenous at that) for something that they don't even think is a problem/needs the medicine.

Hotcoffee, are you having problems with your WBC? I haven't even been keeping track of my stuff, I've been leaving that to Dr. C because a lot of it I don't understand. What do you need to keep an eye out for? I'm curious because I'm wondering if I am dropping the ball on myself here... even though this is my second time around with it, I'm still very much in the 'research' phase since I have a newly found co-infection, and there is so much more that is known about lyme now that they didn't know 10 years ago - and some stuff that has been disproven that they were so sure about back then.

 

[hotcoffee]

I knew what you meant - it is obvious that you think a great deal of Dr. C from your posts, so I knew that you obviously want what is best for him in terms of getting better.

I think the fear of not having a 'doctor' around for a bit is the fear of the unknown again, and the worry that when you've made so much progress, you don't want to go backwards. I worry about that too - and like you said, the biggest problem is that lyme is *so* misunderstood that there isn't really anyone qualified to cover for Dr. C while he's out. And that sucks... I'm sure no doctor is going to want to call in prescriptions for heavy-duty antibiotics (intravenous at that) for something that they don't even think is a problem/needs the medicine.

Hotcoffee, are you having problems with your WBC? I haven't even been keeping track of my stuff, I've been leaving that to Dr. C because a lot of it I don't understand. What do you need to keep an eye out for? I'm curious because I'm wondering if I am dropping the ball on myself here... even though this is my second time around with it, I'm still very much in the 'research' phase since I have a newly found co-infection, and there is so much more that is known about lyme now that they didn't know 10 years ago - and some stuff that has been disproven that they were so sure about back then.

I got a call around Christmas... had to come off the IV Antibiotics because the white blood count was down in the teens or twenties.... then 1st of the year he said it was safe to go back on but it has to be watched.... right before he got ill, the office called and said there was a concern again....

taking that into consideration... it might be good if the Rx runs out for a week or so.... but I'm not looking forward to the herx that follow when I go back on again....

 

[hotcoffee]

How is everyone doing today?

I got an email from one of the support groups about the ticks being out already.

That brings up 2 questions for me.... since I already have lyme....

Do I give Lyme to the little boogers that bite me?

Can I get Lyme again on top the Lyme I have?

Oh and for those of us on antibiotics.... remember to put on plenty of sun block and stay out of the sun as much as possible.... some antibiotics will give a rash if you get too much sun....

Hoping to hear from Dr. C this week.... Get well Dr. C... We miss you....

 

[grandma]

Is Dr. Cafferty back?

Does anyone know if Dr. Cafferty is back in the office seeing patients this week? I have an appointment and called to confirm, or reschedule if necessary, but they have a phone line problem. It is ringing to a Verizon voice mailbox and asks me to enter my password!

I live too far away to make the drive unnecessarily.

Did anyone have an appt scheduled since he has been out of the office? If so, did his staff call you to advise the appt had to be rescheduled?

Thanks.

 

[Gripper]

He was supposed to return today, but my son had an appointment scheduled for 10:00 this morning and arrived to locked doors and no one there. I've tried to reach them several times and haven't gotten an answer.....

 

[hotcoffee]

Ok.... I would give him another day to get his feet in the door.... it is after all Easter Monday and schools are not even in session.... i can remember when banks and post offices were closed on Good Friday & Easter Monday.....

I would suggest that you give his office a call this afternoon or tomorrow morning and get an update.

Let's all remember that we absolutely need him back....

His health is more important than our inconvenience....

 

[Gripper]

This morning, the office line "has been temporarily disconnected".

 

[hotcoffee]

This morning, the office line "has been temporarily disconnected".

Ringing busy now.... bet it has something to do with road construction on Chancellor's Run

 

[DoWhat]

Ringing busy now.... bet it has something to do with road construction on Chancellor's Run

I just got off the phone with them.
Made an appointment for next week.

 

[Jameo]

It's been about a month w/ no antibiotics or supplements. I'm feeling ok besides my neck It's been killing me lately again. Not a good sign. I started taking the cat's claw again yesterday. Hopefully that will help.

 

[Jameo]

something to think about...

I know it's an old article but I found it interesting. In July 2008 I had a blood transfusion. 6-8 wks later I was feeling like crap but with all new symptoms. Nothing like what I was hospitalized for. My hematologist did a bunch of blood work. The lyme came back +. I've been meaning to ask my lyme doc about this but every time I go in there, I forget. Imagine that

THE DOCTOR'S WORLD - THE DOCTOR'S WORLD - Lyme Disease From a Transfusion? It's Unlikely, but Experts Are Wary - NYTimes.com

Lyme Disease and Babesiosis Blood Donations

 

[hotcoffee]

I've been meaning to ask my lyme doc about this but every time I go in there, I forget. Imagine that

I know exactly what you mean..... the nurse comes and unless I have it written down... I forget....

You know those darting pains that hit and go..... then hit somewhere else .... or the fuzz that gets in front of your eyes... and then it goes away.... I always forget to tell the nurse those things are going on.... or Dr. C for that matter.... but they just show up when they want to.....

I forgot that my face was twitching on and off the last time I went to see Dr. C.... then all of a sudden it decided to twitch in front of him.... lucky me.... I forgot to tell him....

 

[gobblergetter]

Dr. C is IN

Does anyone know if Dr. Cafferty is back in the office seeing patients this week? I have an appointment and called to confirm, or reschedule if necessary, but they have a phone line problem. It is ringing to a Verizon voice mailbox and asks me to enter my password!

I live too far away to make the drive unnecessarily.

Did anyone have an appt scheduled since he has been out of the office? If so, did his staff call you to advise the appt had to be rescheduled?

Thanks.

I had an appointment yesterday with him. It was nice to see him again.
The appointment waiting time is still the same. Appt. for 2:20 got out of there at 4:45 . . . at least I got my "drugs"!!

 

[Jameo]

does anyone need an IV pole? Or any IV flush, heparin, IV tubes? I don't know what to do with it. I hate to just trash it :shrug:

 

[ShyGirl]

does anyone need an IV pole? Or any IV flush, heparin, IV tubes? I don't know what to do with it. I hate to just trash it :shrug:

Jameo, I still have my IV pole, but I gave the rest of my supplies to the visiting nurse.