Lenny
Lovin' being Texican
Not really, it's actually a bacteria. They are called lyme spirochetes. But no matter how you look at it, it'sand makes you itchy just thinking about it
Really a nasty little bugger, the spirochete.
Lyme Discussion
- Thread starter hotcoffee
- Start date
Really a nasty little bugger, the spirochete.
hotcoffee
New Member
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: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....
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.
hotcoffee
New Member
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....
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Jameo
What?!
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.
Jameo
What?!
itsbob
I bowl overhand
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.
Truly wish you all a speedy recovery, and hope the treatments go well.
lisa8439
New Member
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.
lisa8439
New Member
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 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.
Jameo
What?!
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
I think (because my memory sucks) was less chance of infection.
itsbob
I bowl overhand
Isn't colloidal silver that stuff that turns people blue? That would be my luck
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
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hotcoffee
New Member
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.
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.
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.
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.
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itsbob
I bowl overhand
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.
hotcoffee
New Member
I didn't take offense.
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
Lenny
Lovin' being Texican
Lenny
Lovin' being Texican
I didn't take offense.
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
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.
itsbob
I bowl overhand
hotcoffee
New Member
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....
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"
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....
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"