I got new information and deleted the original stuff I had posted here....

How is everyone?

horrid.... and it goes back and forth. One day I'll feel ok, the next two days I can barely drag myself out of bed (I actually don't - I let the kids do it on those days)
:lol:

I go back for my followup in a couple of weeks and will hopefully get the green light for IV antibiotics. My stomach turns even thinking about dealing with that again (this is my second time 'round the block with lyme and picc lines) but on the other hand, I know I have to go there in order to get well again - and this time I have a coinfection to go with it. Of course, last time I didn't have a husband and kiddos to worry about - and I am terrified of the herx days with the coinfection thrown into the mix.

Hotcoffee, where do you have your line at? Arm or chest? I am worried about the chest, simply because my youngest is a little hug monster - and I'm afraid she would do something to the line there. Then again, I've had the arm line and that was tough for many other reasons.

This is one of those things that I really just wish I could go to sleep and wake up, realizing that it was all a bad dream... :bawl:

BTW - I was at CVS in California today and saw a car that had a green 'lyme' ribbon on the back. They also had a bumper sticker about lyme disease (but I can't remember what it said... ironic I suppose coming from a lymie) :lol:

I hope everyone is doing ok - this cold weather is rough on the joints :frown:

I've had my PICC for a little over 4 months now. Right now it's somewhat clogged and very sluggish :ohwell: Nurse is coming out this evening to try and flush it with cathflo (this will be the 3rd time it's been clogged). I'm probably looking at having to have it taken out and replace. :frown: But at least I've been feeling pretty damn good lately.

I've had my PICC for a little over 4 months now. Right now it's somewhat clogged and very sluggish :ohwell: Nurse is coming out this evening to try and flush it with cathflo (this will be the 3rd time it's been clogged). I'm probably looking at having to have it taken out and replace. :frown: But at least I've been feeling pretty damn good lately.

I'm sorry you are having so much trouble with the PICC. It's good to hear that you are feeling better.
My husband gets his PICC out tomorrow. I am so glad. He has been on it for 9 months. He is going to continue treating with naturals and suppliments.

I am doing good. Had a rough January. Over did at the holidays and my symptoms kicked in. Then caught a cold. It was a bad month.

I am finally feeling better. The symptoms are very mild and I only have a couple of days that I even notice anything durring the week.

I'm sorry you are having so much trouble with the PICC. It's good to hear that you are feeling better.
My husband gets his PICC out tomorrow. I am so glad. He has been on it for 9 months. He is going to continue treating with naturals and suppliments.

I am doing good. Had a rough January. Over did at the holidays and my symptoms kicked in. Then caught a cold. It was a bad month.

I am finally feeling better. The symptoms are very mild and I only have a couple of days that I even notice anything durring the week.

Looks like my PICC is probably coming out too :ohwell: Nurse thinks I have a blood clot. Arm is swollen, minor discomfort and cold hand. Going to the hospital today for a chest x-ray and sono. :blah:

Looks like my PICC is probably coming out too :ohwell: Nurse thinks I have a blood clot. Arm is swollen, minor discomfort and cold hand. Going to the hospital today for a chest x-ray and sono. :blah:

Oh Jameo. :huggy: Let us know what happens.

Oh Jameo. :huggy: Let us know what happens.

Keep your fingers and toes crossed that if they do take my PICC out I won't have to have it replaced! :lmao: Hopefully I can finish my treatment with just oral antibiotics.

Keep your fingers and toes crossed that if they do take my PICC out I won't have to have it replaced! :lmao: Hopefully I can finish my treatment with just oral antibiotics.

Are you awake during PICC placement? It is painful?

Are you awake during PICC placement? It is painful?

You are awake. It's not painful at all. They give you a shot to numb the area that feels like a bee sting and that really is the worst part of it. Well, and a few days afterward you arm is kinda sore. It does sound A LOT worse than what it actually is.

Going to the hospital today for a chest x-ray and sono. :blah:

:huggy:

I've had my PICC for a little over 4 months now. Right now it's somewhat clogged and very sluggish :ohwell: Nurse is coming out this evening to try and flush it with cathflo (this will be the 3rd time it's been clogged). I'm probably looking at having to have it taken out and replace. :frown: But at least I've been feeling pretty damn good lately.

Looks like my PICC is probably coming out too :ohwell: Nurse thinks I have a blood clot. Arm is swollen, minor discomfort and cold hand. Going to the hospital today for a chest x-ray and sono. :blah:

Keep your fingers and toes crossed that if they do take my PICC out I won't have to have it replaced! :lmao: Hopefully I can finish my treatment with just oral antibiotics.

You are awake. It's not painful at all. They give you a shot to numb the area that feels like a bee sting and that really is the worst part of it. Well, and a few days afterward you arm is kinda sore. It does sound A LOT worse than what it actually is.

Wow, I hope everything works out for you :huggy:

Off of IV antibiotics for a while now. After I stopped the IV antibiotics, I found that I needed to stay with the probiotics and detox (Flor-Essence mild detox from The Good Earth in Leonardtown works great!).

Just started noticing an arthritic-like feeling in my hands. There doesn't seem to be a sign of debilitating joint pain or neurological issues anymore.

:huggy: to eveyrone!! Hope it goes well for you today Jameo!! :huggy:

Keep your fingers and toes crossed that if they do take my PICC out I won't have to have it replaced! :lmao: Hopefully I can finish my treatment with just oral antibiotics.


:huggy: Good luck!

Anybody on the Rosephin get really bad chills after a couple of hours of taking it?
My whole body is shivering, and I'm very light headed.

DW

Good luck Jameo.

Anybody on the Rosephin get really bad chills after a couple of hours of taking it?
My whole body is shivering, and I'm very light headed.

DW

Are you letting it warm up before doing your infusions?


And thanks ya'll! Off I go :ohwell:

Are you letting it warm up before doing your infusions?


And thanks ya'll! Off I go :ohwell:

:huggy:

Looks like my PICC is probably coming out too :ohwell: Nurse thinks I have a blood clot. Arm is swollen, minor discomfort and cold hand. Going to the hospital today for a chest x-ray and sono. :blah:

I'm sorry to hear that. Hope it goes well. Keeping you up in my prayers.

No blood clots. But I did have to have my PICC replaced. Some how it became dislodged and was curled up high in my chest. The x-rays looked pretty cool :lmao: To replace it they just pulled the old one out and shoved the new one in. Easy peasy :yay:

No blood clots. But I did have to have my PICC replaced. Some how it became dislodged and was curled up high in my chest. The x-rays looked pretty cool :lmao: To replace it they just pulled the old one out and shoved the new one in. Easy peasy :yay:

:yay:

No blood clots. But I did have to have my PICC replaced. Some how it became dislodged and was curled up high in my chest. The x-rays looked pretty cool :lmao: To replace it they just pulled the old one out and shoved the new one in. Easy peasy :yay:

I think you're ready for child birth now. :biggrin: :lmao:

I think you're ready for child birth now. :biggrin: :lmao:

:smack: Oh hell no!


:lmao:

Anybody on the Rosephin get really bad chills after a couple of hours of taking it?
My whole body is shivering, and I'm very light headed.

DW


Not on Rosephin [unless what I'm taking is a generic].... but I did have really bad chills a couple of hours after infusion for about a week early in January.... it went away tho....

Have you felt like you have bugs crawling on your skin or have you felt like there was a trickle of water or blood running down you leg when there's nothing there? That went away after about a week too....

Now I'm getting migraines but the tennitis is quieter....

I think I am herxing big time.
Now I am burning up, temp 100.1
Just finished the IV 1 hour ago.
I think I need to go to bed.

hotcoffee and dowhat - do you have the line in your arm or chest? I don't know where he is going to want mine... does he let you pick? (we all have the same doc...) We talked about IV abx at my last appointment and I know that he is going to tell me that they are my next step.

I'm just ready to feel better - I get a 100degree temp most nights just out of the blue, and it does suck so I feel for ya dowhat. I remember herxing when I did this the first time lyme reared its ugly head, and it is no picnic. I didn't have kids then and I had taken a leave from my job, so I spent most of the day 'out of it' with anxiety meds... :lol: I can't do that this time...

How long do you both have to do the IV for?

Not on Rosephin [unless what I'm taking is a generic].... but I did have really bad chills a couple of hours after infusion for about a week early in January.... it went away tho....

Have you felt like you have bugs crawling on your skin or have you felt like there was a trickle of water or blood running down you leg when there's nothing there? That went away after about a week too....

Now I'm getting migraines but the tennitis is quieter....

The itches :jameo: Had them last week. I thought I was having a reaction to new laundry detergent. Then my nurse told me if I was itching from head to toe, it wasn't the new detergent. She told me it was most likely the dead little Lyme bugs getting outta my system :twitch: :jameo: Now I itch all over again just thinking about it!!

dowhat - do you have the line in your arm or chest?

How long do you both have to do the IV for?

I have a Groshong, which is the tube in your chest.
I have had it since Nov.
Since we have the same Dr. he will want you to get the Groshong. He works with a Surgeon that works out of Calvert Hospital.

How long for IV Antibiotics?
Until you have no more symptoms, or until your insurance stops covering it.
Hope that helps.

She told me it was most likely the dead little Lyme bugs getting outta my system :twitch: :jameo:

Like real dead bugs? :faint: I had no idea!!

I have a Hickman Central Line.... it goes into my chest....

I got mine at Calvert too... It's an ugly white tube....:coffee: but it beats having to have a needle stuck in me.... and it's actually easy enough to hide.

Tonight my bones ache and I've got a major headache yet again..... bummer....

Anybody on the Rosephin get really bad chills after a couple of hours of taking it?
My whole body is shivering, and I'm very light headed.

DW

I used to get chills, even when I allowed plenty of time for the solution to thaw out. I would administer mine once a day, just before bedtime.

I think I got more chills from the other solution (heparin?) that you use to flush the line, than I did from the antibiotic itself. I ended up wearing a thermal top and a sweatshirt to counter the chilliness.

I didn't notice the light-headedness in my sleep, but had nausea and mental fog the whole time I was taking the antibiotic.

Thanks Dowhat that was helpful... sounds pretty much like what is going to be going on with me. He said that he wanted me to have the chest port and expected me to be on the antibiotics for a long time... I said 'so about 6 months' and he just kind of looked at me and said something about how that would be really 'undertreating' it.

I've had the line in my arm - I know the drill with lyme (though this time I have a co-infection that's a parasite that is really 'bugging' me :lol: (sorry, had to use the pun). He mentioned something about a surgery-type procedure to put the chest port in - do you have to stay overnight? Can it easily 'come out' or dislodge or whatever? I have young kids who love to hug... that will be an adjustment for them, and I know there will be slip-ups no matter how hard they try... I'm terrified that one of them is going to rip the thing out of me by accident!

The thing I hate about lyme is that it never really goes away (as per the doctor and many recent studies anyway) and it is like a systemic thing that you treat - then it lies dormant in your system until some huge stress or trauma 'wakes' it back up. Then you've got to rinse and repeat, go through the same sh!t all over again... as I am finding out now, 8 years after I was first diagnosed with it (probably close to 10 since I was actually bitten).

the doc. mentioned a movie (doctumentary) about lyme - has anyone seen it? It looks like one of those things you can only see at a 'screening' right now - I don't know if they will release it down the road or not... shame we can't all get together and set up a screening at the base theater or something. I know you can rent it out (just like for birthday parties) and they allow you to bring your own tape (and the site for the movie lets you get a copy for a community screening... you probably have to return it in so many days). I know not everyone has access to the base though... but I can't think of another place like that to do it. Library maybe? It would have to be smaller and I know those rooms fill up sort of fast...

Like real dead bugs? :faint: I had no idea!!

Not really, it's actually a bacteria. They are called lyme spirochetes. But no matter how you look at it, it's :twitch: and makes you itchy just thinking about it :jameo:

Thanks Dowhat that was helpful... sounds pretty much like what is going to be going on with me. He said that he wanted me to have the chest port and expected me to be on the antibiotics for a long time... I said 'so about 6 months' and he just kind of looked at me and said something about how that would be really 'undertreating' it.

I've had the line in my arm - I know the drill with lyme (though this time I have a co-infection that's a parasite that is really 'bugging' me :lol: (sorry, had to use the pun). He mentioned something about a surgery-type procedure to put the chest port in - do you have to stay overnight? Can it easily 'come out' or dislodge or whatever? I have young kids who love to hug... that will be an adjustment for them, and I know there will be slip-ups no matter how hard they try... I'm terrified that one of them is going to rip the thing out of me by accident!

The thing I hate about lyme is that it never really goes away (as per the doctor and many recent studies anyway) and it is like a systemic thing that you treat - then it lies dormant in your system until some huge stress or trauma 'wakes' it back up. Then you've got to rinse and repeat, go through the same sh!t all over again... as I am finding out now, 8 years after I was first diagnosed with it (probably close to 10 since I was actually bitten).

the doc. mentioned a movie (doctumentary) about lyme - has anyone seen it? It looks like one of those things you can only see at a 'screening' right now - I don't know if they will release it down the road or not... shame we can't all get together and set up a screening at the base theater or something. I know you can rent it out (just like for birthday parties) and they allow you to bring your own tape (and the site for the movie lets you get a copy for a community screening... you probably have to return it in so many days). I know not everyone has access to the base though... but I can't think of another place like that to do it. Library maybe? It would have to be smaller and I know those rooms fill up sort of fast...

The movie is Under Our Skin. Under Our Skin: An Infectious New Film (http://www.underourskin.com/) I have a copy. Very interesting movie. There is a yahoo Lyme support group that is talking about a possible viewing. CalvertCountyLyme : Calvert County Lyme (http://health.groups.yahoo.com/group/CalvertCountyLyme/) Lots and lots of good info being passed around in there!

The movie is Under Our Skin. Under Our Skin: An Infectious New Film (http://www.underourskin.com/) I have a copy. Very interesting movie. There is a yahoo Lyme support group that is talking about a possible viewing. CalvertCountyLyme : Calvert County Lyme (http://health.groups.yahoo.com/group/CalvertCountyLyme/) Lots and lots of good info being passed around in there!

cool! I would LOVE to see it. I am interested in one thing though - having seen the movie, does it really 'accurately' portray what someone with lyme goes through, or does it really gravitate towards the extreme (for drama/interest)? And is it really informative - i.e. does it explain what and how lyme affects the body?

I'll admit, I'm a bit afraid that they will keep reiterating the entire 'CDC guidelines suck' angle... while I totally agree that the CDC guidelines are bull%$#% I hope that they focus more on telling the story of lyme and the people who have it - and getting people to realize for themselves that the CDC guidelines are bogus based on the suffering they have seen, rather than just being force-fed a line... if that makes any sense.

Thanks for the links - I'll check both of them out and join that yahoo group... I don't think that St. Mary's has anything, right? I'd love to make that lyme group at CMH but it is just at a bad time for me... I'm getting the kids to bed then, and coming from St. Mary's it is just too much on a school night. *sigh*

The movie is Under Our Skin. Under Our Skin: An Infectious New Film (http://www.underourskin.com/) I have a copy. Very interesting movie. There is a yahoo Lyme support group that is talking about a possible viewing. CalvertCountyLyme : Calvert County Lyme (http://health.groups.yahoo.com/group/CalvertCountyLyme/) Lots and lots of good info being passed around in there!

I use this support site more.... there seems to be a wider membership and more information.... support group (http://www.mdjunction.com/)

cool! I would LOVE to see it. I am interested in one thing though - having seen the movie, does it really 'accurately' portray what someone with lyme goes through, or does it really gravitate towards the extreme (for drama/interest)? And is it really informative - i.e. does it explain what and how lyme affects the body?

I'll admit, I'm a bit afraid that they will keep reiterating the entire 'CDC guidelines suck' angle... while I totally agree that the CDC guidelines are bull%$#% I hope that they focus more on telling the story of lyme and the people who have it - and getting people to realize for themselves that the CDC guidelines are bogus based on the suffering they have seen, rather than just being force-fed a line... if that makes any sense.

Thanks for the links - I'll check both of them out and join that yahoo group... I don't think that St. Mary's has anything, right? I'd love to make that lyme group at CMH but it is just at a bad time for me... I'm getting the kids to bed then, and coming from St. Mary's it is just too much on a school night. *sigh*

I found it to be very informative. It's not dramatized. Overall it's a good summary of Lyme. How it effects lives, the BS with insurance companies. I think it does explain some on the CDC guidelines, but it doesn't shove any info in your face.

I don't think St. Mary's has anything yet.

I use this support site more.... there seems to be a wider membership and more information.... support group (http://www.mdjunction.com/)

MD junction is very good too. The Calvert Lyme yahoo group is mainly for the support meetings held at Calvert Hospital but everyone is welcome to join and share their stories.

Doc just doubled my IV meds and added something for me to take 3 days a week too.... Not feeling so great today....

Doc just doubled my IV meds and added something for me to take 3 days a week too.... Not feeling so great today....

Are you doing the rocephin twice a day now?

I saw my doc monday and told him I've been feeling great lately. Pretty much symptom free! He said he wants me to be great for 2 months. Next month he'll check my immune system levels and if they are good, maybe just maybe take me off the IV abx :yahoo: :crossingfingers:

Not really, it's actually a bacteria. They are called lyme spirochetes. But no matter how you look at it, it's :twitch: and makes you itchy just thinking about it :jameo:

Really a nasty little bugger (http://www.ucmp.berkeley.edu/bacteria/spirochetes.html), the spirochete.

Are you doing the rocephin twice a day now?

I saw my doc monday and told him I've been feeling great lately. Pretty much symptom free! He said he wants me to be great for 2 months. Next month he'll check my immune system levels and if they are good, maybe just maybe take me off the IV abx :yahoo: :crossingfingers:

I don't know if it's a generic for rocephin or not? It's called ceftriaxone.

I was supposed to get a new shipment of meds last night... it didn't arrive.... couldn't make it here via UPS from Columbia MD ... shipped Tuesday! I haven't had the IV all day.... and now they are sending them via courier....

I don't know if it's a generic for rocephin or not? It's called ceftriaxone.

I was supposed to get a new shipment of meds last night... it didn't arrive.... couldn't make it here via UPS from Columbia MD ... shipped Tuesday! I haven't had the IV all day.... and now they are sending them via courier....

Are you using Equinox, out of Ellicott City?
And yes, Ceftriaxone is the same as Rocephin.
I did not get my delivery either, but I think mine has to do more with the Dr. and the insurance company.

I was quoted out of pocket expense about $1500/month.

Are you using Equinox, out of Ellicott City?
And yes, Ceftriaxone is the same as Rocephin.
I did not get my delivery either, but I think mine has to do more with the Dr. and the insurance company.

I was quoted out of pocket expense about $1500/month.

Yeah... Equinox....

I ran out of medicine Thursday after the morning IV. I called them again from work on Friday and they said it was shipped UPS on Tuesday. I asked for a tracking number so I could track it myself... they claimed they didn't have it..... Then I called again last night when I got home and there was still no delivery.... they said they were going to send out a courier with it.... I thanked them [really.... like "oh thankyou, thankyou, thankyou!"] .... at 10:30 PM I went to bed with no delivery... No courier... This morning the box [UPS] was on the deck....

OK yes I'm upset that UPS didn't make it until after 10:30 PM the next day.... but now I want to know what happened to the courier.... they only sent enough for 3 1/2 days.... they were supposed to change the order from 7 to 14....

My stomach is killing me....my head is aching.... my tennitis is roaring.... my back hurts... my legs are cramping.... Dr. C added something called flagly to it [that's the 3 x a day for 3 days rx].... it's supposed to bring on the herxing....

Yeah... Equinox....

I ran out of medicine Thursday after the morning IV. I called them again from work on Friday and they said it was shipped UPS on Tuesday. I asked for a tracking number so I could track it myself... they claimed they didn't have it..... Then I called again last night when I got home and there was still no delivery.... they said they were going to send out a courier with it.... I thanked them [really.... like "oh thankyou, thankyou, thankyou!"] .... at 10:30 PM I went to bed with no delivery... No courier... This morning the box [UPS] was on the deck....

OK yes I'm upset that UPS didn't make it until after 10:30 PM the next day.... but now I want to know what happened to the courier.... they only sent enough for 3 1/2 days.... they were supposed to change the order from 7 to 14....

My stomach is killing me....my head is aching.... my tennitis is roaring.... my back hurts... my legs are cramping.... Dr. C added something called flagly to it [that's the 3 x a day for 3 days rx].... it's supposed to bring on the herxing....

I do the rocephin twice a day for 4 days, then the flagyl 3 times a day for the other 3 days. The flagyl is some nasty crap.

Really a nasty little bugger (http://www.ucmp.berkeley.edu/bacteria/spirochetes.html), the spirochete.

:jameo: that makes me itch all over again!! :jameo: nasty little ####ers! :jameo:

WOW, didn't realize Lyme disease was that prevelant in SoMD. Thinking how small a sample size (how many forum subscribers) and how many of you are on here talking about it.. the true amount of afflicted must be significant.

Truly wish you all a speedy recovery, and hope the treatments go well.

WOW, didn't realize Lyme disease was that prevelant in SoMD. Thinking how small a sample size (how many forum subscribers) and how many of you are on here talking about it.. the true amount of afflicted must be significant.

Truly wish you all a speedy recovery, and hope the treatments go well.

We all thank you.... We are indeed in one of the areas that have an elevated risk for Lyme....US Map (http://www.aldf.com/usmap.shtml) and
Maryland (http://www.aldf.com/RiskMap/maryland/maryland.shtml)

:jameo: that makes me itch all over again!! :jameo: nasty little ####ers! :jameo:

I just realized I have a new rash on my upper arm.... well yippee.... the stuff is doing it's work....

WOW, didn't realize Lyme disease was that prevelant in SoMD. Thinking how small a sample size (how many forum subscribers) and how many of you are on here talking about it.. the true amount of afflicted must be significant.

Truly wish you all a speedy recovery, and hope the treatments go well.

Honestly, I think it is much worse than anyone thinks - there are probably many people out there that have mild symptoms and don't even know that they have it.

Problem with that is that it can cause a lot of complications down the road... a lot of people don't find out they have it until they are really, really sick - like me. Because really, who goes to the doctor when they are feeling a bit tired and achy... then you start to get colds, etc. a little more frequently (immune system is running down), you get a little forgetful, and mild headaches start setting in. Still, people don't typically go to the doctor...

Me, I didn't go to the doctor (when I first got lyme - almost 10 years ago) until I was literally walking into walls and so sick and in pain that I couldn't get out of the bed most days. And even still, it took them over a year to even test me for lyme. Thankfully, most doctors now realize that lyme is a threat and test for it earlier... when my symptoms started flaring up again I just knew that it was the lyme again.

I (and many others) think that lyme is more of a systemic disease - once you have it, you have it for life... yes, the IV antibiotics can get rid of the active disease, but just like lupus or RA, it can lie dormant in your system and if there is another trigger (trauma, extreme stress - and in my case, childbirth/pre-eclampsia) it can creep right back up and start to dominate your system again.

I really wish that they (as in the CDC) would put some more money into lyme research and treatment... their guidelines are bogus right now and it's almost like they don't want to touch the subject.

DoWhat and Hotcoffee - is there any reason that the chest port (groshong or hickman) is used instead of the picc line in the arm? I had the line in my arm last time - doc. wants the chest port (we all have the same doc.) and I didn't get a chance to really question him about it, so I was just wondering if either of you knew what the difference was.

I have to admit, I have some reservations about the chest line - one reason being that I have younger kids and they like to run up and hug me/climb on me/etc. and it is going to be hard for them to remember that they can't do that - I'm scared to death that they are going to accidentally rip it out. The arm line just seems easier to work with/keep away from things that might bump into it and mess with it.

What can't you do with the chest port in? What about things like vacuuming? I know lifting over a certain weight is probably out, right? That is going to be tough too... as I lift the kids for little things like getting in a shopping cart, helping them up for something, etc... it is just going to be such a huge adjustment for not only me but for them too - I know they will try their best but they are young and they will impulsively do something and forget.

I have it...

I still haven't gotten a hold of how or what I'm going to do about it. It took me about a 18 months (and a new Doctor) to finally figure out what I had.

My Mom has had it for about 10 years but believes more in alternative medicine than medicines because the CDC is so behind on things.

I did Doxycycline for 30 days. It took about 2 weeks to work, but then I felt GREAT! After 30 days, it only took me about a week to start feeling bad again.

I went to an infectious disease specialist whom recommended a spinal tap. My Mom said that would open up a path for the spirochetes to get in to my brain and nervous system (my terms, not hers). Any insight on this?

She told me not to do the IV's either but again, she's not much in to traditional medicine. She's fairly active in Lyme circles it seems and has heard plenty of horror stories. My argument is how many people has IV's worked on that she never hears about because they worked. Some thing does what it should, life goes on. Some thing doesn't, they scream it from the roof tops.

She takes colloidal silver which she claims help a lot. Insight?

She also uses a "Dougs Machine" which sends frequencies through your body which makes the "critters" (as she calls them) "wiggle" until they die off. Insight?

She showed me the difference between healthy blood and infected blood with a dark field microscope. Seems this dark field microscope is illegal for Doctors to use? Insight?

Right now I'm taking colloidal silver and have to Ambien-CR to sleep. Main symptoms are joint stiffness, can't sleep and can't remember any thing.

Researching a Doctor now. Found one in VA that is said to be really good, but can't think of her name right now. Go figure...

Along with the IV and oral abx my doc has me taking some herbal supplements - Andrographis, Resveratol, Cat's Claw and Vit C. They seem to be helping a good bit.

Isn't colloidal silver that stuff that turns people blue? That would be my luck :lol:

DoWhat and Hotcoffee -
.

I think (because my memory sucks) was less chance of infection.

Isn't colloidal silver that stuff that turns people blue? That would be my luck :lol:

Colloidal silver isn't considered safe or effective for any of the health claims manufacturers make. Nor is it an essential mineral, as some sellers of silver products claim.


It can turn your skin blue, and your organs blue and is not reversible.

Lyme Disease: Questionable Diagnosis and Treatment (http://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html)

DoWhat and Hotcoffee - is there any reason that the chest port (groshong or hickman) is used instead of the picc line in the arm? I had the line in my arm last time - doc. wants the chest port (we all have the same doc.) and I didn't get a chance to really question him about it, so I was just wondering if either of you knew what the difference was..

PICC line is inserted into a vein in the arm rather than a vein in the neck or chest.

Tunneled catheter [groshong or hickman] is surgically inserted into a vein in the neck or chest and passed under the skin. Only the end of the catheter is brought through the skin through which medicines can be given. Passing the catheter under the skin helps keep it in place better, lets you move around easier, and makes it less visible.

A PICC line can be inserted by a nurse. Mine required a doctor and a trip to outpatient surgery. It'll require another trip to outpatient surgery to remove it.

I believe it was the doctor who inserted my line who told me that it would last longer. I beleive he also said that it was less likely to get snagged or pulled than the PICC.

I have to admit, I have some reservations about the chest line - one reason being that I have younger kids and they like to run up and hug me/climb on me/etc. and it is going to be hard for them to remember that they can't do that - I'm scared to death that they are going to accidentally rip it out. The arm line just seems easier to work with/keep away from things that might bump into it and mess with it. .

It seems to me that the PICC line is much more likely to be bumped or messed with. The line I have comes out of the chest, a few inches below the collar line and a few inches to the left of my bra. I keep the line tucked into my bra. [guys... I guess you'll have to ask DoWhat how he keeps his line secure]. A 4 X 4 1/2 clear bandage covers the area where the line comes out and holds it stable.

What can't you do with the chest port in? What about things like vacuuming? I know lifting over a certain weight is probably out, right? That is going to be tough too... as I lift the kids for little things like getting in a shopping cart, helping them up for something, etc... it is just going to be such a huge adjustment for not only me but for them too - I know they will try their best but they are young and they will impulsively do something and forget.

I can do anything I could do before. My hickman is not in the way. [I gotta say tho... I don't think it looks particularly sexy but then again.... maybe a trip to the Victoria Secret store would help]

The point is... it's not in the way.... and it's less likely to dislodge than a PICC or a regular IV line.


Lyme Disease: Questionable Diagnosis and Treatment (http://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html)

I read the article.... would prefer to start a new thread with it.... k? It will take me a while, since I have problems with concentration at the moment, but I will post the thread by the end of the day. Those of us who are dealing with walking into walls, falling down for absolutely no reason, suffering with horrible constant headaches, along with numerous other common symptoms, and so sick and in pain that we struggle to get out of the bed most days should have a thread to discuss this topic here with those who periodically bring these questions. It's a good topic.

Creating this new thread will increase awareness and educate.

I read the article.... would prefer to start a new thread with it.... k? It will take me a while, since I have problems with concentration at the moment, but I will post the thread by the end of the day. Those of us who are dealing with walking into walls, falling down for absolutely no reason, suffering with horrible constant headaches, along with numerous other common symptoms, and so sick and in pain that we struggle to get out of the bed most days should have a thread to discuss this topic here with those who periodically bring these questions. It's a good topic.

Creating this new thread will increase awareness and educate.

It's all ok..

It's interesting, Lyme was never something I looked up or was concerned with, but reading this thread got me to do a little research, and learned a little more than I knew yesteray. Now I am concerned.

It's all ok..

It's interesting, Lyme was never something I looked up or was concerned with, but reading this thread got me to do a little research, and learned a little more than I knew yesteray. Now I am concerned.


I didn't take offense. :buddies: These warnings come up all the time.

Here's a conspiracy theory for you.... Suppose a sailor is stationed at New London Naval Base. He buys a little home out in Gales Ferry and brings his wife and two daughters to live there. His wife has a son while he's there. Suppose this sailor and his family are stationed there for a lengthy period... Say 1956 to 1964..... during that time the sailor and his children clear the land around the house, rake the leaves, go skating on the local ponds, in general play outside every season of the year.

Then in 1975 in Old Lyme, Connecticut a mysterious outbreak of arthritis leads a doctor to uncover a disease which is named after the area. The sailor and his family are in Virginia by this time, retired. Is it possible that any of them were infected back in 1956 to 1964?

Is it possible that the immune system was somehow not capable of fighting off infections that might have occurred later in life due to an infection in this time period?

Is it possible that the sailor's death by what was called "brain atrophy" by the attending physician was a final deadly phase of Lyme?

There are a lot of stories and there is also a lot of mis-information.... there just isn't enough research because the CDC has had blinders on.

Lyme Disease (http://www.aldf.com/Misinformation_about_Lyme_Disease.shtml)

Colloidal silver isn't considered safe or effective for any of the health claims manufacturers make. Nor is it an essential mineral, as some sellers of silver products claim.


It can turn your skin blue, and your organs blue and is not reversible.

Lyme Disease: Questionable Diagnosis and Treatment (http://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html)

:yay:

I didn't take offense. :buddies: These warnings come up all the time.

Here's a conspiracy theory for you.... Suppose a sailor is stationed at New London Naval Base. He buys a little home out in Gales Ferry and brings his wife and two daughters to live there. His wife has a son while he's there. Suppose this sailor and his family are stationed there for a lengthy period... Say 1956 to 1964..... during that time the sailor and his children clear the land around the house, rake the leaves, go skating on the local ponds, in general play outside every season of the year.

Then in 1975 in Old Lyme, Connecticut a mysterious outbreak of arthritis leads a doctor to uncover a disease which is named after the area. The sailor and his family are in Virginia by this time, retired. Is it possible that any of them were infected back in 1956 to 1964?

Is it possible that the immune system was somehow not capable of fighting off infections that might have occurred later in life due to an infection in this time period?

Is it possible that the sailor's death by what was called "brain atrophy" by the attending physician was a final deadly phase of Lyme?

There are a lot of stories and there is also a lot of mis-information.... there just isn't enough research because the CDC has had blinders on.

Lyme Disease (http://www.aldf.com/Misinformation_about_Lyme_Disease.shtml)

Don't see a conspiracy anywhere in your narration. Yes, it is possible one or more of the family you describe may have encountered the Ixodes flea but it is impossible to say whether that flea was infected with the spirochete. It is likely the explosion of Lyme disease corresponds with the parallel explosion in the deer population with the overly restrictive harvesting restrictions society placed on hunting in the 60's and 70's.

The Borrelia burgdorferi appears to have originated in Asia but it's not sure how it got to the U.S. and when.

It is likely the explosion of Lyme disease corresponds with the parallel explosion in the deer population with the overly restrictive harvesting restrictions society placed on hunting in the 60's and 70's.



:yeahthat:

Well now I know .... One of the major problems that led me to the Dr. that led me to the diagnosis was that I fell on my face for no obvious reason.... I'd be walking along and all of a sudden I'd be doing a nose dive.....

The other night I was in my kitchen.... I was walking between the stove and the frig.... and my right leg wouldn't walk.... luckily this time I was able to grasp a chair so I didn't fall on my face....

I said "my leg won't walk!" .... I thought I was saying it to myself but apparently my husband heard me.... I looked up and he was looking at me....

The best way I can explain what is happening is this.... you are walking along putting one foot in front of the other and then the foot doesn't move.... It just stays behind.... that pulls you off balance and you fall down... go boom... like a toddler.... very bad for the self esteem....:whistle:

That is a case of a nerve not responding to a command... a normal task becomes impossible if the nerve controlling actions and responses of the task hiccups....

This passed a few minutes later... and although I did suffer with horrible leg cramps the rest of the night, I am thrilled that I am on the mend....

I must be getting better because the last time I fell my hands wouldn't even go out to try to grasp anything.... i remember thinking "this is going to hurt":yahoo:

4ALgOikmjCw

That video was really really good and to the point - thank you for sharing. How do I find it elsewhere to send to my family?

here's the link...

YouTube - ~7~ SEVEN LYME FACTS THAT COULD HAVE SAVED ME!!! (http://www.youtube.com/watch?v=4ALgOikmjCw&feature=player_embedded#)

After years of not feeling well and years of many visits to my doctor I’ve decided I need to become my own health advocate. Each day I feel more drained, achier, poorer memory, than the previous day. My doctor did one “Lyme test” a couple years ago and because it was negative, she went no further. My recent research now tells me my symptoms should be her focus in determining if I have Lyme disease, as there is actually no blood test that clearly diagnoses this disease. I realize the treatment plan is very important in order to truly kill the disease vs simply taking the edge off just to have the symptoms return after the antibiotics stop, so I am thinking MY doctor is probably not the person I would want to manage this for me. Which doctors do you recommend for diagnosing and treating Lyme disease? If it turns out I have Lyme disease I need to have confidence in the treatment plan the doctor recommends.

I went out on the web and typed in LLMD. The first site to pop up was selling a book. I've also seen other sites selling incense and various herbal treatments. I even saw one site that was advertising a colon cleansing as a cure. The search for a Lyme Literate Medical Doctor [LLMD] can be a treacherous one. If you are lucky enough to know you need a LLMD, you are lightyears ahead of where many of us started.

I found this out there on the web. I pulled out some of the garbage the guy was selling and left in the points that really make good sense.

It's not very likely that you will walk into any random general practitioner’s office or general infectious disease doctor’s office and recieve good Lyme disease care!


Awareness of Lyme Disease is very low among U.S. physicians.
By seeing a doctor who is not versed in the condition, you are almost guaranteeing that you will be sent out of the office empty-handed, if not ridiculed.
Presently, Lyme patients have a difficult time gaining recognition and validation in the United States.
Most U.S. physicians do not even acknowledge the existence of Chronic Lyme Disease.


Seaching the Lyme Disease forums in your area is one way to begin. As a rule Lyme patients are either sharing the names of their doctors openly or guarding the information as if it were the key to life.

If you don't have a Lyme Literate Doctor in your area, seek out a general practitioner who may not be aware of the condition but who has instead proven to you over past relationship that he or she is open-minded, accommodating, humble, and inquisitive.


He or she may be willing to do what it takes to become educated on Lyme disease.
When it comes to Lyme-literate physicians, the key qualities to seek are open-mindedness and humility.


It's important to note... if you approach your doctor about Lyme and they simply shut you down... you should continue your seach elsewhere. There is no point in wasting your time trying to change a doctor’s mind when you can instead spend your time and energy cultivating a professional relationship with one of the hundreds of physicians out there who will be accommodating and helpful to you.

The simple fact is that most physicians are not only ignorant of Lyme disease, but doctors are actually taught in medical school that it is a simple, rare infection that they will never see in their practices.

Instead of fighting it, just accept that the Lyme disease of medical practice field is years ahead of its time, and find someone who is already reading and working with the disease.

Most of all..... BE YOUR OWN ADVOCATE.... You have to depend on yourself first. Good Luck on your search....

Just went to the doctor.... now I have to have an MRI to find out what's up with my leg....

bummer:coffee:

Hello to all my fellow Lymies. It has been a long time since I have been on here, and it has taken a while for me to read this entire thread.

First, I hope all of you are doing well in your different stages of treatment/recovery. I have had my Groshong port out for almost 5 months now. Now, my symptoms are coming back. Totally sux.

2 years ago I had my PICC line inserted and did IV Rocephin for a little over a month. That is all insurance would pay for, so according to that Doctor *POOF* I was cured.

After finding another LLMD, I had the groshong placed in April last year. Rocephin for first 3 months, then I lost my gallbladder. That is one of the side effects of long term rocephin use. 3 more months on a different IV ABX and port was removed. Dr. Pfaltz took it out right there in his office. No big deal! I was expected to have to go in for another out patient visit at Calvert, but nope... just a yank!

Now, here I am 5 months after removal and I feel like I am heading back to step one. I am going on a mini vacation the end of this month, then after that I will have my CD57 levels checked and take it from there.

My continued prayers for all of us!!

Hugs,

Purplefox

Hello to all my fellow Lymies. It has been a long time since I have been on here, and it has taken a while for me to read this entire thread.

First, I hope all of you are doing well in your different stages of treatment/recovery. I have had my Groshong port out for almost 5 months now. Now, my symptoms are coming back. Totally sux.

2 years ago I had my PICC line inserted and did IV Rocephin for a little over a month. That is all insurance would pay for, so according to that Doctor *POOF* I was cured.

After finding another LLMD, I had the groshong placed in April last year. Rocephin for first 3 months, then I lost my gallbladder. That is one of the side effects of long term rocephin use. 3 more months on a different IV ABX and port was removed. Dr. Pfaltz took it out right there in his office. No big deal! I was expected to have to go in for another out patient visit at Calvert, but nope... just a yank!

Now, here I am 5 months after removal and I feel like I am heading back to step one. I am going on a mini vacation the end of this month, then after that I will have my CD57 levels checked and take it from there.

My continued prayers for all of us!!

Hugs,

Purplefox

Well.... after stringing together 3 great days.... I was beginning to look forward to the end..... then I read your post.... that sucks...:coffee:

I hope you will be in recession soon....

Becky

Well.... after stringing together 3 great days.... I was beginning to look forward to the end..... then I read your post.... that sucks...:coffee:

I hope you will be in recession soon....

Becky

Hey, you keep your chin and hopes up. Everyone is different and as we all know, there is no said pattern to this disease.

Keep the good days goin'!!! :buddies:

Just started day 5 and I only woke once during the night last night! This is real progress....

:yahoo::yahoo::yahoo::yahoo::yahoo: I get my PICC out tonight!!! :yahoo::yahoo::yahoo::yahoo::yahoo:

Good for you!

:yahoo::yahoo::yahoo::yahoo::yahoo: I get my PICC out tonight!!! :yahoo::yahoo::yahoo::yahoo::yahoo:

That's great Jameo.
Will you be doing naturals or something else?

That's great Jameo.
Will you be doing naturals or something else?

My doc wants me to continue taking the herbs. Cat's Claw, Andrographis, Vit C, Resveratrol. No more antibiotics :banana:

My doc wants me to continue taking the herbs. Cat's Claw, Andrographis, Vit C, Resveratrol. No more antibiotics :banana:

Sounds like the same protocol my husband was put on when he got his IV out. He is much happier with not being on the anti-biotics anymore.
Have a great day. It looks to be a good one weather wise. :)

:yahoo::yahoo::yahoo::yahoo::yahoo: I get my PICC out tonight!!! :yahoo::yahoo::yahoo::yahoo::yahoo:


YEAH!!!!!!

Truly a cause for celebration. Good luck with after care!

YEAH!!!!!!

Truly a cause for celebration. Good luck with after care!

Purplefox, did you go on any naturals after doing the anti-biotics?
I hope you feel better soon.

I get my PICC out tonight!!!

:clap:

Lyme Disease-Misunderstood, Misdiagnosed and Mistreated - Southern Maryland News, Charles County, Calvert County and St. Mary's County News (http://www.thebaynet.com/news/index.cfm/fa/viewstory/story_ID/17012)

Just wanted to bump this post up a bit. Thanx.

I just received this and wanted to pass it on. Dr. Cafferty will be one of the speakers.


Wednesday March 24th, from 7 to 9.
Free to the public
Sponsored by: Lyme awareness Network 50 Clyde Jones Rd. Sunderland, MD (across from Sullivan's Autobody)
Location is at the Church of Jesus Christ of Latter Day Saints

Recognize symptoms of lyme:
Painful, joints, achy or weak muscles, exhausting fatigue
Changes in memory, difficulty with verbal skills or multitasking
Neurological twitches, numbness, tingling

Space is limited so please call 443-968-1991 if you would like to attend.

After sharing with my doctor that I wanted her to consider Lyme Disease as a possible cause for my long term symptoms she ordered a C6 and a repeat Western Blot. Anyone with long term symptoms diagnosed based on the C6 or was this just a waste of time? My Western Blot was negative 5 years ago and the only thing that’s changed is 5 more years of worsening symptoms so I expect it to still be negative. I should have the test results tomorrow. If the results are negative I am going to need a new doc because mine is not going to treat me for Lyme Disease without a positive blood test.

After sharing with my doctor that I wanted her to consider Lyme Disease as a possible cause for my long term symptoms she ordered a C6 and a repeat Western Blot. Anyone with long term symptoms diagnosed based on the C6 or was this just a waste of time? My Western Blot was negative 5 years ago and the only thing that’s changed is 5 more years of worsening symptoms so I expect it to still be negative. I should have the test results tomorrow. If the results are negative I am going to need a new doc because mine is not going to treat me for Lyme Disease without a positive blood test.

Did you get my PM and make the call?

I just received this and wanted to pass it on. Dr. Cafferty will be one of the speakers.


Wednesday March 24th, from 7 to 9.
Free to the public
Sponsored by: Lyme awareness Network 50 Clyde Jones Rd. Sunderland, MD (across from Sullivan's Autobody)
Location is at the Church of Jesus Christ of Latter Day Saints

Recognize symptoms of lyme:
Painful, joints, achy or weak muscles, exhausting fatigue
Changes in memory, difficulty with verbal skills or multitasking
Neurological twitches, numbness, tingling

Space is limited so please call 443-968-1991 if you would like to attend.

Awesome Doctor. I feel so much better because of his help.

I just received this and wanted to pass it on. Dr. Cafferty will be one of the speakers.


Wednesday March 24th, from 7 to 9.
Free to the public
Sponsored by: Lyme awareness Network 50 Clyde Jones Rd. Sunderland, MD (across from Sullivan's Autobody)
Location is at the Church of Jesus Christ of Latter Day Saints

Recognize symptoms of lyme:
Painful, joints, achy or weak muscles, exhausting fatigue
Changes in memory, difficulty with verbal skills or multitasking
Neurological twitches, numbness, tingling

Space is limited so please call 443-968-1991 if you would like to attend.

ShyGirl, just wanted to say that the phone number is for more info. about the event. We are not taking reservations . . first come, first get a seat. And yes, Dr. C. is on the program to speak about how Lyme affects the brain.
Thanks-
gg

Who's going?

I'm going to go.... [provided the Lyme doesn't stop me]

Will Dr. Cafferty be able to make the meeting?

Will Dr. Cafferty be able to make the meeting?

Dr. Cafferty has been briefed and has agreed to speak on the 24th.

Dr. Cafferty has been briefed and has agreed to speak on the 24th.

?? Briefed ?? Is he ok?

?? Briefed ?? Is he ok?

Yes.

?? Briefed ?? Is he ok?

Hotcoffee, at the time I read your post and you asked if he was o.k.,I replied with "yes". At this time I have heard different about his well being. You probably heard information on this before I did. I will be trying to find more out about his condition thru today and tomorrow. Sorry for the confusion.
gg

At this time I have heard different about his well being. You probably heard information on this before I did. I will be trying to find more out about his condition thru today and tomorrow. Sorry for the confusion.
gg

Please keep us informed.
If there is anything that I can do to help in any way, please don't hesitate to ask.
He is a great Dr., and for what he has done to help me I would love to return the favor.

Please keep us informed.
If there is anything that I can do to help in any way, please don't hesitate to ask.
He is a great Dr., and for what he has done to help me I would love to return the favor.


I second that.... if Dr. C wouldn't mind... I'm sure both of us would keep a pm confidential....

I am grateful for his care and hope he is on the path to normal again...

I second that.... if Dr. C wouldn't mind... I'm sure both of us would keep a pm confidential....

I am grateful for his care and hope he is on the path to normal again...

Dr. Cafferty will not be present at the Lyme Awareness Night on March 24.
He is doing o.k. but will be out of the office for a time. The office will be open again on March 29th according to the sign on his office door.
thanks-
gg

There will be other speakers tho.... right?

I mean it is still a go?????

There will be other speakers tho.... right?

I mean it is still a go?????

Yes, Lyme Awareness Night is still a go.
At this short notice, it has been a challenge to find another LLMD to speak in his place. The commitee is doing the best it can.
With or without a LLMD the program will be informative for many, I'm sure.
thanks-
gg

I just received this and wanted to pass it on. Dr. Cafferty will be one of the speakers.


Wednesday March 24th, from 7 to 9.
Free to the public
Sponsored by: Lyme awareness Network 50 Clyde Jones Rd. Sunderland, MD (across from Sullivan's Autobody)
Location is at the Church of Jesus Christ of Latter Day Saints

Recognize symptoms of lyme:
Painful, joints, achy or weak muscles, exhausting fatigue
Changes in memory, difficulty with verbal skills or multitasking
Neurological twitches, numbness, tingling

Space is limited so please call 443-968-1991 if you would like to attend.

Bump so people can get the address- date- and time.....

see ya there

It was a good meeting.

What arrangments have been made for his Lyme patients? I haven't heard anything and I have a follow- up appt scheduled for next week. What is everyone doing that had appts scheduled, especially if you needed med refills, while he is out? I am not being insensitive and I don't know anything except the rumor of a medical emergency (not even sure if the situation is Dr. C or a family member). I know he works very hard and NEEDS to take the time he requires to be ready to return. I am just thinking that if I need to schedule with someone else I'd better make the call soon.

What arrangments have been made for his Lyme patients? I haven't heard anything and I have a follow- up appt scheduled for next week. What is everyone doing that had appts scheduled, especially if you needed med refills, while he is out? I am not being insensitive and I don't know anything except the rumor of a medical emergency (not even sure if the situation is Dr. C or a family member). I know he works very hard and NEEDS to take the time he requires to be ready to return. I am just thinking that if I need to schedule with someone else I'd better make the call soon.

I can't tell you much... I have an appt. scheduled for Thursday. At the meeting in Sunderland, those "in the know" said that he had a heart attack. I also heard [note this is second hand info... all of it...] that he was going to find someone to take some of the patients for a little while... but then again... he could be back by now and the office could be really busy..... just hang in there a little longer and I'm sure we will all have answers....

I can't tell you much... I have an appt. scheduled for Thursday. At the meeting in Sunderland, those "in the know" said that he had a heart attack. I also heard [note this is second hand info... all of it...] that he was going to find someone to take some of the patients for a little while... but then again... he could be back by now and the office could be really busy..... just hang in there a little longer and I'm sure we will all have answers....

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 :howdy:

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 :howdy:

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!!

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....

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.

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 :lol: 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) :lol: 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 :yay:

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 :lol: so I'm not exactly sure where to start, aside from a card.

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....:doh:

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 :coffee:

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. :buddies:

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. :ohwell:

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. :buddies:

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. :ohwell:

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....

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....:coffee:

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.

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.....

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..... :whistle:

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....

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

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:coffee:

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

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

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

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

THE DOCTOR'S WORLD - THE DOCTOR'S WORLD - Lyme Disease From a Transfusion? It's Unlikely, but Experts Are Wary - NYTimes.com (http://www.nytimes.com/1989/07/18/science/doctor-s-world-lyme-disease-transfusion-it-s-unlikely-but-experts-are-wary.html?pagewanted=1)

Lyme Disease and Babesiosis Blood Donations (http://www.lymeinfo.net/bloodtransfusions.html)

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

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.... :killingme lucky me.... I forgot to tell him.... :killingme

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"!!:yahoo:

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:

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.