She is getting better.

Has she been giving antibiotics yet? Szkotnicki treated me last year for it

She has been on one but it is not enough, Cafferty has given the ok for IV antibiotics but staff is making her wait - has been 1 month now or so.

Yeah, she needs to be seen by another doc asap if she is getting worse. Mine was caught in the very earlier stage so I just did like 10 days of antibiotics.

PM Christy http://forums.somd.com/members/christy.html She is the local Lymes expect on here :yay:

Have never PMed - does she have an email?

I may need another doctor to take daughter to. Cafferty in Great Mills sees Lymes folks but he has so many that the staff is taking forever to get the paperwork in and submitted. Daughter is getting worse!

My sister has recently had a bad case of Lymes and is recovering. We went to the ER several times and came home with no diagnosis or treatment. She is currently seeing her primary doctor and a neurologist. I would suggest seeing one of these if you have not done so. Dr. Reel is an excellent neurologist from what I hear. My sister is seeing Chesapeake Neurology in Mechanicsville. They didn't waste any time. Good luck.

I may need another doctor to take daughter to. Cafferty in Great Mills sees Lymes folks but he has so many that the staff is taking forever to get the paperwork in and submitted. Daughter is getting worse!


I suffered with Lyme Disease...went to a "infectious disease" specialist in Calvert...Dr. Pomilla...he was terrific!!!

Calvert Internal Medicine Group - Calvert County Maryland Physicians Group (http://www.calvertmedicine.com/)

I suffered with Lyme Disease...went to a "infectious disease" specialist in Calvert...Dr. Pomilla...he was terrific!!!
Calvert Internal Medicine Group - Calvert County Maryland Physicians Group (http://www.calvertmedicine.com/)

I was seen by Dr. Pomilla a few years ago when I tested pos to Lyme and then a couple of years later when I got ehrlichiosis. Both are tick borne diseases. He was great.

I was lucky tho cause each time I caught them early and was treated early. I wouldn't wait on the doc you are seeing now. I'd find someone else who could treat your daughter now.

Most neurologist Docs will test for Lyme first to rule it out if possible, as the test is uncomplicated and inexpensive. Many other tests follow.
However, Lyme is insidious and difficult to pin down. Some who test positive do the Rx route and improve rapidly; others can have recurring, unpredictable symptoms on and off for years.

Nothing to play around with... Locally (in SMC), *Dr. Charles Reel and his staff in CharHall are great IMHO. May God Bless.

*My Bad. Spelled/Typo as Dr. Real the first time; it's Dr. Charles Reel (with super PA Tracy McCluskey)

Thank you everyone for the info. After an appt yesterday, seems all paperwork is in now and today found out insurance has accepted the treatment plan. It was hard at first because physician thought it was mono. She had that along time ago. She never showed up with Lymes (some kind of bar graph), but has now fit all symptoms of it.

Thank you everyone for the info. After an appt yesterday, seems all paperwork is in now and today found out insurance has accepted the treatment plan. It was hard at first because physician thought it was mono. She had that along time ago. She never showed up with Lymes (some kind of bar graph), but has now fit all symptoms of it.

The Mono is making her case even worse. I have Lyme's and previously had a severe case of Mono. The Mono degrades your immunity, so the Lyme's can take over.

I have bee struggling with the decision of IV antibotics. I did oral for several months and stopped. I have been doing an herbal protocol for several months. My last CD57 had dropped from 104 to 34. Needs to be above 200 to be considered in remission.

What to do?

It is always said Lyme, not Lymes

Dr. Cafferty is also my doctor. I have been getting treatment since August last year. I have had 3 different types of pills and 2 kinds of IV antibiotics. Dr. Cafferty is a good doctor but sometimes I wonder if he is dealing with something that is over his head. He has had a lot of patients diagnosed with lyme. He has moved his whole schedule around o be able to see all the patients. He will only do Thursdays now. His staff has said many times that they are overwelmed with the amount of people they are getting and have no where in the schedule to see them. That makes me feel like crap because I am one of those patients that they are complaining about.

To sum it up, I would get another doctor. He is good but like I said, I wonder if he truely understands lyme. The wait time at his office is ridiculously long. There are also forums on lyme websites that are very informational. You can read and chat with people who are going thru the same thing.

Dr. Cafferty is also my doctor. The wait is long at times, I do have to agree but you have to take consideration that he is the only doctor seeing the patients. From what the receptionist told me over the phone is that their Lyme day where they just see patients with Lyme are Thursdays, but I think it is a great thing. I have more time with him then feeling like he's being rushed through my appointment. He truly is an amazing doctor. I haven't had any problems with his staff they are very helpful from what I experienced. I would recommend his office

Dr. Cafferty is also my doctor. The wait is long at times, I do have to agree but you have to take consideration that he is the only doctor seeing the patients. From what the receptionist told me over the phone is that their Lyme day where they just see patients with Lyme are Thursdays, but I think it is a great thing. I have more time with him then feeling like he's being rushed through my appointment. He truly is an amazing doctor. I haven't had any problems with his staff they are very helpful from what I experienced. I would recommend his office

Not me......his office sux.

I would recommend him, he is a great doctor, just WAY overbooked. It's like someone there (and I don't think it's Dr. Cafferty)--is VERY money hungry and over schedules the pizz out of that poor man.

What amazes me about this disease is they say it is hard to diagnose in people. I find this strange because when we take our dogs to the vet, they test them for Lyme disease and we have the results before we leave the office. Do they have the same test for humans???

Dr. Cafferty is also my doctor. The wait is long at times, I do have to agree but you have to take consideration that he is the only doctor seeing the patients. From what the receptionist told me over the phone is that their Lyme day where they just see patients with Lyme are Thursdays, but I think it is a great thing. I have more time with him then feeling like he's being rushed through my appointment. He truly is an amazing doctor. I haven't had any problems with his staff they are very helpful from what I experienced. I would recommend his office

I have been complaining of some of my symptoms for years.... I have had plenty of tests but they all came back ok.... I was [am] really sick.... I went to see Dr. Cafferty... he ran some tests.... on the second or third meeting... he diagnosed Lyme Disease.... put me on medication and I started to improve.... 2 months later, although a lot of the symptoms are more complex and will require a lot more treatment... I can see the light at the end of the tunnel....

The tests for Lyme are not any good.... AND not everyone gets that bullseye rash... what if you got the rash behind you back or behind you knee... and you didn't see it.... I hear some say that you may not even get the rash until your second infection....

Dr. Cafferty says he is not the Lyme Disease Doctor.... He says he is a doctor who has a lot of patients who have lyme disease to treat.....

I know [from research] that this is a pandemic.... our children are at risk too! Thank God there are doctors like Dr. Cafferty and the fact that he is treating so many Lyme patients tells me that we need to educate families, doctors, insurance companies, and our politicians as well....


We need to form a movement... to make people aware of the pandemic!

Then maybe more doctors would do some research and Dr. Cafferty would have some help battling this horrible disease.

I have been complaining of some of my symptoms for years.... I have had plenty of tests but they all came back ok.... I was [am] really sick.... I went to see Dr. Cafferty... he ran some tests.... on the second or third meeting... he diagnosed Lyme Disease.... put me on medication and I started to improve.... 2 months later, although a lot of the symptoms are more complex and will require a lot more treatment... I can see the light at the end of the tunnel....

The tests for Lyme are not any good.... AND not everyone gets that bullseye rash... what if you got the rash behind you back or behind you knee... and you didn't see it.... I hear some say that you may not even get the rash until your second infection....

Dr. Cafferty says he is not the Lyme Disease Doctor.... He says he is a doctor who has a lot of patients who have lyme disease to treat.....

I know [from research] that this is a pandemic.... our children are at risk too! Thank God there are doctors like Dr. Cafferty and the fact that he is treating so many Lyme patients tells me that we need to educate families, doctors, insurance companies, and our politicians as well....


We need to form a movement... to make people aware of the pandemic!

Then maybe more doctors would do some research and Dr. Cafferty would have some help battling this horrible disease.

I agree 100%. I have had Lyme for over 5 yrs. Never had the bulls eye rash. I was misdiagnosed with everything from Chronic Fatigue to Chronic Epstein Barr, to, get this: MENOPAUSE! Yet, my old doc tried for almost a year to convince me it was menopause.

Most Dr.s go off the CDC's recommendations that are WRONG!! They were written by 12 guys back in the day (70's) and I think 9 of those guys are making money from books, etc. If you ever get the chance, watch/buy the movie: "UNDER OUR SKIN" I think EVERYONE should see this movie. Not only those with Lyme, EVERYONE!~!! It explains why this is being pushed under the rug and dr.'s that are willing to treat this as aggressively as it needs to be are losing their licenses!

It is in epidemic numbers just on the East Coast.

There is a Lyme support group over at CMH, but I am not sure how receptive they would be about starting a writing campaign to our "Leaders" to recognize this disease for what it really is.

Most neurologist Docs will test for Lyme first to rule it out if possible, as the test is uncomplicated and inexpensive. Many other tests follow.
However, Lyme is insidious and difficult to pin down. Some who test positive do the Rx route and improve rapidly; others can have recurring, unpredictable symptoms on and off for years.

Nothing to play around with... Locally (in SMC), Dr. Chas Real and his staff in CharHall are very thorough and "up to speed". God Bless.

Again sounding dumb here the vet runs this test annually on my dogs, and one keeps coming back with a weak positive because she has had it and was treated for it. Is the test not good on humans, i work in Calvert and several people i work with have been diagnosed and have been being treated for years. are the vets ahead of human doctors ????????

Again sounding dumb here the vet runs this test annually on my dogs, and one keeps coming back with a weak positive because she has had it and was treated for it. Is the test not good on humans, i work in Calvert and several people i work with have been diagnosed and have been being treated for years. are the vets ahead of human doctors ????????


Not so dumb sounding.... but...

When the neurologist ran the test.... and my 2 [not 1 but 2] previous PCP ran the test.... it did not come up a screaming raging positive test as required by the CDC.... I had no bulls eye rash....

I was horribly sick.... but they kept saying I was fine....

The test comes back with two stains or strains or whatever... positive.... but according the CDC... that's not positive....

Dr. Cafferty looked at the symptoms... and the test and put me on the antibiotic to rule out the lymes.... I started to feel better almost immediately.... I'm not well.... by any stretch of the mind.... but I feel better than I have in years....

The problem is.... if the CDC were to address the chronic lyme disease pandemic....doctors would be overwhelmed.... emergency rooms and clinics would be bulging at the seams.... it would bankrupt the insurance companies in this area.....

It comes down to money... plain and simple.... money...

Dr. Cafferty .

He is my Dr.
I have also been diagnosed with Lyme.
I have good days and bad days.

Try this place.
Lyme Disease Support Group (http://www.mdjunction.com/lyme-disease)

Thanks DoWhat.... see ya there...

He is my Dr.
I have also been diagnosed with Lyme.
I have good days and bad days.

Try this place.
Lyme Disease Support Group (http://www.mdjunction.com/lyme-disease)

:yeahthat: Welcome to the Club!

Anybody, See, heard or been to a local "live and in person" Lyme support group? Interested inb starting one?

He is my Dr.
I have also been diagnosed with Lyme.
I have good days and bad days.

Try this place.
Lyme Disease Support Group (http://www.mdjunction.com/lyme-disease)

The problem is.... if the CDC were to address the chronic lyme disease pandemic....doctors would be overwhelmed.... emergency rooms and clinics would be bulging at the seams.... it would bankrupt the insurance companies in this area.....

It comes down to money... plain and simple.... money...

Not to mention that the CDC is so in bed with the insurance companies it's shameful. You will rarely see a doctor advertise as a lyme specialist because it puts them in the cross hairs for the insurance companies to go after them and try and get their license revoked. Treating lyme disease can get very expensive and despite evidence to the contrary the CDC still sticks with the recommendation of a couple weeks of antibiotics as treatment. Anything more and the insurance companies can refuse to pay. #######s.

New here....I went to one support meeting at CMH. I couldn't make the others. It is on the first Monday of the month at 6:00 pm downstairs in training room 1. Nice group it lasts for one hour.

It would be nice to just meet up somewhere for coffee and swap Lyme stories.

Jan

Are there any of you in Southern Calvert County.... or California?

CMH is half an hour from me... so that makes it 45 minutes or more from those in St. Mary's...

I would love to go to a face to face.... somewhere .... I know there are resources....

I can't find anything of St Mary's Hospital website. I find it unbelievable that there is no support group in St Mary's, there are so many people with Lyme.

I really need to connect with someone that has had a PIC line put in because I am struggling with that decision right now.

Are there any of you in Southern Calvert County.... or California?

CMH is half an hour from me... so that makes it 45 minutes or more from those in St. Mary's...

I would love to go to a face to face.... somewhere .... I know there are resources....

I can't find anything of St Mary's Hospital website. I find it unbelievable that there is no support group in St Mary's, there are so many people with Lyme.

I really need to connect with someone that has had a PIC line put in because I am struggling with that decision right now.


DoWhat gave me this link and I've found it quite informative....Lyme Support Group (http://www.mdjunction.com/lyme-disease)

I really need to connect with someone that has had a PIC line put in because I am struggling with that decision right now.[/QUOTE]

I had a pic line put in over at Calvert Hospital. Give me a call...you KNOW where I work...or PM me and I'll give you my home number.

I've had Lyme for about 2.5 years now I think...

I was finally tested when I switched Doctors about 4 months ago- had all the telltale signs sans the bullseye. I took Doxy for a month and felt better than I have in 2+ years. I quit taking it and felt like pooh again so am back on it for now.

8/19 going to see an infectious disease Doctor to get a game plan.

My Mom has had Lyme for 10+ years and has some theories that work well for her. Colloidal Silver is one of them- she sent me some but I haven't tried it yet. I never told her how I was feeling (I'm 37) but after telling her she of course wished I'd told her sooner. I forgot she had it to be honest- she's been fairly symptom free for years now.

Has anyone used a "Dougs Machine"?

Meissner Research: DP100 Dual Plate Energizer (http://meissnerresearch.com/products/DP100)

That's my Mom and the website is her boyfriends. They've spent $50K+ working on her Lyme and she swears by the Dougs Machine; I haven't tried that either.

My fiance is a Nurse Practitioner (Peds and Womans Health) so going the "medical" route right now.

I've been doing a lot of reading on that site that DoWhat suggested....

I'm going to stick with the doctor's advice that I'm getting now....

I told my husband... I'm tempted to hire a lawyer to suit those morons that let me suffer all this time.... without the real diagnosis

I've been doing a lot of reading on that site that DoWhat suggested....

I'm going to stick with the doctor's advice that I'm getting now....

I told my husband... I'm tempted to hire a lawyer to suit those morons that let me suffer all this time.... without the real diagnosis

I haven't been to the site that DoWhat posted YET...but I will. The more info and the more we can help each other out is a HUGE plus.

I am a member of another Lyme support forum:

WildCondor's World (http://www.wildcondor.com/index.html)

It is VERY informative, easy to navigate and I personally love the layout. If you click on Lyme World on the left hand side (I think it's on the left) It will allow you to register. It's not very active but there is a ton of info on there that is very helpful.

Check it out and let me know what you all think.

WildCondor's World (http://www.wildcondor.com/index.html)


Awesome site! :yay:

I heard Scurvy prevents Lyme disease...

No, wait..




Reverse that..

I heard Scurvy prevents Lyme disease...

No, wait..




Reverse that..
It's your birthday so we'll let you get away with that. Groan.

Thank you so much for this thread. The information really needs to get out there.
I have had a long and difficult journey with Lyme. It started when I was trying to find out what was wrong with my sister. She was very sick and getting a lot of different diagnosis. She was in a lot of pain. She had seizures and problems with her memory.
The story is very long. To make it shorter. It took 2-3 years at least to find a doctor that finally put all the pieces together. The fact that she had a violent attack of a co-infection from Lyme played a part also.
She recently came off of many months of IV anti-biotics and is finally getting some of her life back.
Sorry this is so long. I tried to make it as short as possible. We currently have three of us in the family that have been diagnosed with it and are on anti-biotics.

Doc just called. I popped pos for Lyme again. Early stage again. 14 days of antibiotics again.

whatb were your symptoms?

I heard Scurvy prevents Lyme disease...

No, wait..




Reverse that..

:lol:

Doc just called. I popped pos for Lyme again. Early stage again. 14 days of antibiotics again.

Longer if they will do it, if not find a new Dr.
At least 2 months.

It could have gone into remission from the first time.

It is always said Lyme, not Lymes



Since it's connected to Lyme Ct, as the town gets the credit for being first..

Shouldn't it be Lyme's Disease?

Kind of like Lou Gehrig's Disease?

Longer if they will do it, if not find a new Dr.
At least 2 months.

It could have gone into remission from the first time.

I agree! Most "2nd" cases of Lyme is just a flare up from the first that was put into remission.

I would make sure you are seeing a LLMD.

Longer if they will do it, if not find a new Dr.
At least 2 months.

It could have gone into remission from the first time.

Great :ohwell: The antibiotics make me wanna :barf: and my insurance doesn't cover them.

I agree! Most "2nd" cases of Lyme is just a flare up from the first that was put into remission.

I would make sure you are seeing a LLMD.

Is there any other docs around here besides Cafferty?

Are nightmares common with Lyme? A friend of mine was recently diagnosed with stage 5 and asked me if I had nightmares also. Which I do. I'll have 2 or 3 a night lately. Wake up screaming and/or crying. Not fun at all :ohwell:

I know alot of folks have Lyme Disease and I was wondering what your symptoms were besides the bullseye rash?

Thank you :)

I know alot of folks have Lyme Disease and I was wondering what your symptoms were besides the bullseye rash?

Thank you :)

I never had the rash, well, that I noticed anyways.

Doc just called. I popped pos for Lyme again. Early stage again. 14 days of antibiotics again.


You are extremely lucky to have a diagnosis in the "early stage"....

You may not believe it but a great number of people with Lyme go undiagnosed for years while feeling insane and depressed along with the other physical ailments....

I'm glad you caught it early....

You are extremely lucky to have a diagnosis in the "early stage"....

You may not believe it but a great number of people with Lyme go undiagnosed for years while feeling insane and depressed along with the other physical ailments....

I'm glad you caught it early....

I do know I'm lucky. I know how exhausted, achy and flat out crappy I feel. I can't imagine being way worse and feeling like that for years.

Dr. George Leon - Waldorf - good with Lymes also.

Calvert County has prescription cards they give out to Calvert County residents. These offset the cost of prescription if one has no coverage. Better than nothing. Just go to a library - show drivers to prove residence and they will give you one. All family members can use it from what I am told.

Since it's connected to Lyme Ct, as the town gets the credit for being first..

Shouldn't it be Lyme's Disease?

Kind of like Lou Gehrig's Disease?

Not sure. I have always been told it is Lyme by doctors. You may be correct.

I do know I'm lucky. I know how exhausted, achy and flat out crappy I feel. I can't imagine being way worse and feeling like that for years.

I have felt like this for over a yr now..should I be tested? Every time I go to see a doctor they tell me nothing is wrong...I just don't go any more..I can hardly get out of bed in the morning, my whole body aches...I am super tired all the time....what else comes with lymes? I have a list of problems I just live with every day.

I have felt like this for over a yr now..should I be tested? Every time I go to see a doctor they tell me nothing is wrong...I just don't go any more..I can hardly get out of bed in the morning, my whole body aches...I am super tired all the time....what else comes with lymes? I have a list of problems I just live with every day.

Go to another doctor. Could be Lymes. Could be your thyroid. Depression. Vitamin deficiency. Could be a number of things.

Go to another doctor. Could be Lymes. Could be your thyroid. Depression. Vitamin deficiency. Could be a number of things.

Lupus.

Go to another doctor. Could be Lymes. Could be your thyroid. Depression. Vitamin deficiency. Could be a number of things.

I was checked for all thsoe other things....about this time last yr.....

I had an MRI because they saw something ( a mass ) in my ear, but it did not show up and seemed to just disappear.....I thought I had a sinus infection and that was causing the tiredness..doc said no.......told me to see a nuro, but I did not go because I felt like I was a hypo or something.....

I was checked for all thsoe other things....about this time last yr.....

Have them do a "Western Blot" test for Lyme. Most GP's do a spot test that will not catch Lyme if it has been in your system longer than 30 days. Another way to tell is to have him perform a CD-57 blood panel on you. Just a simple blood test but tells them loads about your "infection".

Have them do a "Western Blot" test for Lyme. Most GP's do a spot test that will not catch Lyme if it has been in your system longer than 30 days. Another way to tell is to have him perform a CD-57 blood panel on you. Just a simple blood test but tells them loads about your "infection".

Thanks so much.....I will do that, I am tired of feeling so sick & tired all the time..then when I go to the doctor, I leave feeling like I must just be crazy or something......

Have them do a "Western Blot" test for Lyme. Most GP's do a spot test that will not catch Lyme if it has been in your system longer than 30 days. Another way to tell is to have him perform a CD-57 blood panel on you. Just a simple blood test but tells them loads about your "infection".

What does the "spot test" consist of? Does it include any blood work? The reason I ask is because I'm going to my GP tomorrow and I have a referral from my dermo for blood work to test for Lyme. I'm going to ask them to do the Western Blot because if I do have Lyme, it's been in my system more than 30 days. I don't have a bullseye but I do have a bite from something that won't go away and keeps bleeding. I went to my dermo for my 6 month cancer screen and asked her about the bite. That's when she asked if I had ever been tested for Lyme and recommended I get some lab work done.

What does the "spot test" consist of? Does it include any blood work? The reason I ask is because I'm going to my GP tomorrow and I have a referral from my dermo for blood work to test for Lyme. I'm going to ask them to do the Western Blot because if I do have Lyme, it's been in my system more than 30 days. I don't have a bullseye but I do have a bite from something that won't go away and keeps bleeding. I went to my dermo for my 6 month cancer screen and asked her about the bite. That's when she asked if I had ever been tested for Lyme and recommended I get some lab work done.

The spot test is done thru blood work, but will only catch an infection that has been in your system less than 30 days. The Western Blot is your best bet. I encourage EVERYONE to have this test done with their next visit to the docs.

Believe me, the sooner you are diagnosed, the better. I have had Lyme for 6+ years now, and I still am not in remission. It's a very long story so I won't bore you with it.

Good luck at your Doc appt., and PM me with your results when you get them please, I'll add you to my Lyme prayer list!

The spot test is done thru blood work, but will only catch an infection that has been in your system less than 30 days. The Western Blot is your best bet. I encourage EVERYONE to have this test done with their next visit to the docs.

Believe me, the sooner you are diagnosed, the better. I have had Lyme for 6+ years now, and I still am not in remission. It's a very long story so I won't bore you with it.

Good luck at your Doc appt., and PM me with your results when you get them please, I'll add you to my Lyme prayer list!

Thanks so much and I'm sorry you're going through this. It amazes me how many people around here are dealing with this, all from a tiny little tick. I asked the doc if they do the western blot and she assured me that they do. So I should fine out in 10 days if I'm ok. I'll let you know, thanks again!

I encourage EVERYONE to have this test done with their next visit to the docs.

:yeahthat:

I had to switch doctors in order to convince someone to perform the test. I wouldn't take no for an answer. I had been dealing with foggy headedness, really bad neck and shoulder achiness, knee and groin achiness issues for a few years and then wham-o an out-of-the-blue heart issue in Feb.

Through all of that, I had been to many doctors, none of whom could explain my symptoms, until Lyme was diagnosed.

Once the test results came back positive for Lyme, I had to switch doctors again for someone knowledgeable about and willing to treat the disease (Cafferty). I am still waiting for my first appointment with him and have started to experience achiness in my hands and wrists.

Sometimes Lyme is mis-diagnosed as Lupus, MS, Rheumatoid Arthritis and Fibromyalgia, just to name a few...

Sometimes you are not just faced with dealing with the Lyme Disease. Ticks are also known to carry germs associated with other diseases and those other diseases have to be treated too.

Ticks are nasty critters!

For those of you in the club, :huggy:

:yeahthat:

I had to switch doctors in order to convince someone to perform the test. I wouldn't take no for an answer. I had been dealing with foggy headedness, really bad neck and shoulder achiness, knee and groin achiness issues for a few years and then wham-o an out-of-the-blue heart issue in Feb.

Through all of that, I had been to many doctors, none of whom could explain my symptoms, until Lyme was diagnosed.

Once the test results came back positive for Lyme, I had to switch doctors again for someone knowledgeable about and willing to treat the disease (Cafferty). I am still waiting for my first appointment with him and have started to experience achiness in my hands and wrists.

Sometimes Lyme is mis-diagnosed as Lupus, MS, Rheumatoid Arthritis and Fibromyalgia, just to name a few...

Sometimes you are not just faced with dealing with the Lyme Disease. Ticks are also known to carry germs associated with other diseases and those other diseases have to be treated too.

Ticks are nasty critters!

For those of you in the club, :huggy:

You got that right!

Cafferty is really good with Lyme patients (aka: Lymies). He will treat it very aggressively. I had a PICC line placed last year (when I was seeing Dr. Pomilla) but the antibiotic treatment was not long enough.

I have been seeing Dr. Cafferty for 6 months or so now and have been on IV antibiotics (chest port) for 4 months now.

Good luck, and I hope you will like Cafferty as much as I do. The wait at the office is what will kill ya. But once you actually get to see him, it's worth the wait, IMO.

:cds: My appointment with Dr. Cafferty this week was cancelled. He planned a vacation that the scheduling personnel were not aware of.

Next available appointment for new patients: early November :banghead:

Meanwhile, my symptoms are getting worse. :bawl:

Not only that, but once you get in to see Dr. Cafferty, he will confirm the diagnosis, identify the stage of lyme that you have and refer you out to someone else affiliated with the Calvert Hospital ~ Department of Internal Medicine. So I asked if I could just go directly to this someone else since I already know that I have a positive diagnosis. :banghead:

Called the someone else for an appointment and they refuse to see me without a referral and full history of paperwork that they would review BEFORE they would consider taking me on as a patient. :banghead:

:jameo: This is such BS :jameo:

Have them do a "Western Blot" test for Lyme. Most GP's do a spot test that will not catch Lyme if it has been in your system longer than 30 days. Another way to tell is to have him perform a CD-57 blood panel on you. Just a simple blood test but tells them loads about your "infection".

had the western blot test done yesterday..they said I would know something by Friday....

have any of you had panic attacks??? My heart was racing today..I thought it was going to explode...is that a panic attack?

have any of you had panic attacks??? My heart was racing today..I thought it was going to explode...is that a panic attack?

It could be part of it. Be careful.

I'm not so convinced that yours was a panic attack due to the descriptive word "explode". If it happens again, go to the ER. It's not anything to second-guess yourself about.

Check with Dr. Nasr's office in Lusby. They might be able to fit you in.

:huggy: Thanks! I will try.

Check with Dr. Nasr's office in Lusby. They might be able to fit you in.

I called monday and got an appointment for the 17th with him. A friend of mine recommended him to me. From what she has said about him, he seems pretty knowledgeable about lyme :shrug: Apparently he used to work with Cafferty.

I called monday and got an appointment for the 17th with him. A friend of mine recommended him to me. From what she has said about him, he seems pretty knowledgeable about lyme :shrug: Apparently he used to work with Cafferty.

Cafferty was in his office before getting his own practice. He is treating my husband for Lyme. He is good and has many patients with Lyme. Hope everything works out okay.

Lyme Disease Association (http://www.lymediseaseassociation.org/Maps/index.html)

Saw Nasr yesterday for the first time and I REALLY like him so far. He spent 45 minutes with me explaining how lyme works etc etc. Answered all my questions and made sure I understood what he was saying. He put me back on doxy until I get the go ahead from my insurance for a PIC line. :ohwell: Not to thrilled about that. He also told me to take a probiotic. He explained to me how doxy with help the aches and pains but does not cross that threshold to the brain and will not help memory issue. That is where the IV antibiotics come in.

jameo i know someone who has to do iv antibiotics and she has to do them 3x a day for 2hrs each time and had no life due to it. I hope its not that bad for you or you might end up having to take a break from your fulltime job til you are done with the iv antibiotics unless you take them to work with you and have people looking at you funny.

I am scheduled to get my PICC line next Tuesday (9/22/09). I will be giving myself 2 doses a day, 12 hours a part.

Nasr mentioned PICC line and I about :faint: If he mentioned the dosage, I don't remember. The nurse was explaining to me some company will be contacting me about the line and that is all I remember. She was drawing blood, which I can't look at or I will :faint: so I was trying not to pay her any attention.

I've been doing some reading on PICC lines this morning and found this link posted on a site. Seems the biggest PIA is taking a shower and trying to keep the line dry. This thing seems way easier than having to wrap you arm in saran wrap and tape.

Waterproof PICC Line protector for showering, bathing or swimming while keeping PICC line clean and dry (http://store.drycorp.com/SearchResults.asp?Cat=33)

Nasr mentioned PICC line and I about :faint: If he mentioned the dosage, I don't remember. The nurse was explaining to me some company will be contacting me about the line and that is all I remember. She was drawing blood, which I can't look at or I will :faint: so I was trying not to pay her any attention.

I've been doing some reading on PICC lines this morning and found this link posted on a site. Seems the biggest PIA is taking a shower and trying to keep the line dry. This thing seems way easier than having to wrap you arm in saran wrap and tape.

Waterproof PICC Line protector for showering, bathing or swimming while keeping PICC line clean and dry (http://store.drycorp.com/SearchResults.asp?Cat=33)

Jameo I sent you a pm. As for covering the pic line my husband has been using press and seal and it works great.

Jameo I sent you a pm. As for covering the pic line my husband has been using press and seal and it works great.

Great idea! And cheaper too! :lol:

Nasr mentioned PICC line and I about :faint: If he mentioned the dosage, I don't remember. The nurse was explaining to me some company will be contacting me about the line and that is all I remember. She was drawing blood, which I can't look at or I will :faint: so I was trying not to pay her any attention.

I've been doing some reading on PICC lines this morning and found this link posted on a site. Seems the biggest PIA is taking a shower and trying to keep the line dry. This thing seems way easier than having to wrap you arm in saran wrap and tape.

Waterproof PICC Line protector for showering, bathing or swimming while keeping PICC line clean and dry (http://store.drycorp.com/SearchResults.asp?Cat=33)

That looks neat. When I had my picc line I had bought a cast cover thing from CVS. It didn't seal very well.

For the first few months I used Rocephin but started having gall bladder issues and ultimately had to have my gall bladder removed. When I was on Rocephin it was only once a day. I would do it at 8pm when the kids were put to bed. It would take about 45 min but I could still be mobile. After my gall bladder problems I was switched to Claforin. It wasnt as strong so I had to do it once in the morning and once at night. Again, it took about 45 minutes each time. The nurse would come to my work or home once a week to change my bandages.

That looks neat. When I had my picc line I had bought a cast cover thing from CVS. It didn't seal very well.

For the first few months I used Rocephin but started having gall bladder issues and ultimately had to have my gall bladder removed. When I was on Rocephin it was only once a day. I would do it at 8pm when the kids were put to bed. It would take about 45 min but I could still be mobile. After my gall bladder problems I was switched to Claforin. It wasnt as strong so I had to do it once in the morning and once at night. Again, it took about 45 minutes each time. The nurse would come to my work or home once a week to change my bandages.

45 minutes! :jameo: I did not know it took that long. :frown: :sigh: It could always be worse right?

45 minutes! :jameo: I did not know it took that long. :frown: :sigh: It could always be worse right?

your right about that. the picc line meds didn't work as well for me as minocycline. I started taking that after the picc line. That is the only medicine that have me herxing.

He put me back on doxy until I get the go ahead from my insurance for a PIC line.

How are you feeling?

your right about that. the picc line meds didn't work as well for me as minocycline. I started taking that after the picc line. That is the only medicine that have me herxing.

That's what I am on. Herxing started within the first 24 hours. I've been on it for 1 1/2 months. Definately noticing the cycles of the disease. MY husbands treatment with IV takes a half hour.

your right about that. the picc line meds didn't work as well for me as minocycline. I started taking that after the picc line. That is the only medicine that have me herxing.

Herxing? Is that the getting worse before getting better?


How are you feeling?

Compared to others, not to bad. Some days are worse than others.

Herxing?


Herxing and finding the balance | Lyme Disease Symptoms | Lyme Disease Research Database (http://www.lyme-disease-research-database.com/lyme_disease_blog_files/lymesymptoms-herxing.html)

45 minutes! :jameo: I did not know it took that long. :frown: :sigh: It could always be worse right?

Good Lord. One of my kids has it and it only took her 10 minutes, tops.

Good Lord. One of my kids has it and it only took her 10 minutes, tops.

That's more like it.

That's more like it.

Well, you squirt in the blood thinner, then the Rocephin and then the clean up solution. 5 minutes if you're in a hurry.

If memory serves, the Rocephin was to be injected over three minutes.

Good Lord. One of my kids has it

How are they doing?

Well, you squirt in the blood thinner, then the Rocephin and then the clean up solution. 5 minutes if you're in a hurry.

If memory serves, the Rocephin was to be injected over three minutes.

put on gloves, rub tube with alcohol, inject saline, attach ball of medicine, saline again, heperin.

The ball of medicine I had took 20-30 minutes. You can put it in your pocket and walk around.

How are they doing?

Excellent. Caught it real early. Bells Palsy in her face one morning, mom took her to the docs two days later, real high Lyme's antibodies.

She had a reaction to the Rocephin after two weeks, which is, apparently, pretty common. Picc line came out, went back on the oral, 400 mg a day for a month more. Due for new blood work soon.

She was miserable the whole time the picc line was in and, in hindsight, I'm wondering if that wasn't simply symptomatic of the medicine working and flooding her system with dead spirochete's?

We've been fortunate given the nightmare stories I hear about not even being able to get diagnosis for so many people for six months or a year or more.

:buddies:

put on gloves, rub tube with alcohol, inject saline, attach ball of medicine, saline again, heperin.

The ball of medicine I had took 20-30 minutes. You can put it in your pocket and walk around.

Damn. There seems to be little consensus on this darn disease on treatment?

:buddies:

Damn. There seems to be little consensus on this darn disease on treatment?

:buddies:

It is frustrating. Glad your daughter is doing good. I did doxycycline for a month, picc line for 5 months and minocycline for 3 months. I hate taking meds. Now I freak out when I see anything that appears to be a tick on me or my 2 kids. The other day I freaked out cause I thought my 2 year old had a tick on her head but it was a leaf.

Damn. There seems to be little consensus on this darn disease on treatment?

:buddies:

It is treated on an individual basis. It depends on the doctor, what meds the patient may already be on, and what if any co-infections may be present. Quite a lot of variables there. It is hard to find doctors who have even bothered to do any research into the disease. We were very fortunate that our regular doctors were up to date on it.

Excellent.

I am very happy to hear that.

It is frustrating. Glad your daughter is doing good. I did doxycycline for a month, picc line for 5 months and minocycline for 3 months. I hate taking meds. Now I freak out when I see anything that appears to be a tick on me or my 2 kids. The other day I freaked out cause I thought my 2 year old had a tick on her head but it was a leaf.

OHMYGAWD!!!! 9 months of non stop antibiotics???

That's just scary.

OHMYGAWD!!!! 9 months of non stop antibiotics???

That's just scary.

Larry Zoe did about that amount of time on antibiotics. Her doctor wanted her to go two months without getting a herxheimer reaction before he stopped antibiotics. Worked like a charm. :yay:

Larry Zoe did about that amount of time on antibiotics. Her doctor wanted her to go two months without getting a herxheimer reaction before he stopped antibiotics. Worked like a charm. :yay:

Didn't it take you a terrible, long time to get a diagnosis?

That looks neat. When I had my picc line I had bought a cast cover thing from CVS. It didn't seal very well.

For the first few months I used Rocephin but started having gall bladder issues and ultimately had to have my gall bladder removed. When I was on Rocephin it was only once a day. I would do it at 8pm when the kids were put to bed. It would take about 45 min but I could still be mobile. After my gall bladder problems I was switched to Claforin. It wasnt as strong so I had to do it once in the morning and once at night. Again, it took about 45 minutes each time. The nurse would come to my work or home once a week to change my bandages.

I had my gall bladder out also due to Rocephin in August of this year). I have been on IV meds for 5+ months now. I had a PICC line last year, now I have a Groshong port in my chest. See picture attached. (If it works right!)

My insurance company just approved me for IV meds and home health nurse through March 2010. :faint:

I have to remind myself to take it day by day, otherwise, I think I'd loose my mind. When I had the PICC line I also had the "ball of medicine" but with the Groshong, I use an IV pole that works by gravity twice a day. the med I am on now is Cefotaxime, 2 grams at a time, over a 30 minute period. By the time I flush the line, get the line ready, sterilize the cap of my port, infuse and clean up 45 minutes have gone by.

I had my gall bladder out also due to Rocephin in August of this year). I have been on IV meds for 5+ months now. I had a PICC line last year, now I have a Groshong port in my chest. See picture attached. (If it works right!)

My insurance company just approved me for IV meds and home health nurse through March 2010. :faint:

I have to remind myself to take it day by day, otherwise, I think I'd loose my mind. When I had the PICC line I also had the "ball of medicine" but with the Groshong, I use an IV pole that works by gravity twice a day. the med I am on now is Cefotaxime, 2 grams at a time, over a 30 minute period. By the time I flush the line, get the line ready, sterilize the cap of my port, infuse and clean up 45 minutes have gone by.


See... I can't do all that.... I just can't..... You are so incredibly brave....


I am ok taking the doxy by mouth... but this talk of IV and flushing lines and infusing.... it's just worse than the nerve damage to me....

I went to one doctor's office and the cure was worse than the problems I was having.... [well still am having]... the meds they gave me are [to me] worse than the lymes.....

Sure I am exhausted all the time, and I sometimes fall down for no reason, and I go blind sometimes, and my face droops sometimes for no reason, and I can't swallow sometimes, and my joints ache sometimes, and I hear noises sometimes, and I have axiety attacks sometimes, and I can't sleep sometimes, and I'm gaining all kinds of weight, and on and on and on.....I never feel good anymore, and on and on and on..... but all that's better than the zoned out, weird dreams, zombie state that medicine put me in.....

Don't any of you weigh the cure against the pain? Am I the only one that draws a line? I am avoiding all talk of PICC because I know I cannot deal with that.... I know me.... I am not the kind of person who can do that.... besides... I am prone to MRSA.... a picc would definitely get infected.... [B]I would be in a constant state of fear!

See... I can't do all that.... I just can't..... You are so incredibly brave....


I am ok taking the doxy by mouth... but this talk of IV and flushing lines and infusing.... it's just worse than the nerve damage to me....

I went to one doctor's office and the cure was worse than the problems I was having.... [well still am having]... the meds they gave me are [to me] worse than the lymes.....

Sure I am exhausted all the time, and I sometimes fall down for no reason, and I go blind sometimes, and my face droops sometimes for no reason, and I can't swallow sometimes, and my joints ache sometimes, and I hear noises sometimes, and I have axiety attacks sometimes, and I can't sleep sometimes, and I'm gaining all kinds of weight, and on and on and on.....I never feel good anymore, and on and on and on..... but all that's better than the zoned out, weird dreams, zombie state that medicine put me in.....

Don't any of you weigh the cure against the pain? Am I the only one that draws a line? I am avoiding all talk of PICC because I know I cannot deal with that.... I know me.... I am not the kind of person who can do that.... besides... I am prone to MRSA.... a picc would definitely get infected.... [B]I would be in a constant state of fear!

I couldn't go on knowing that a disease was invading my brain and do nothing about it. The longer you have it, the worse it gets. It just doesn't go away. The constant meds and stress of all that comes with treating the disease is a drain but it was completely worth it to me. My physical pain is gone and my issues with my memory gets better all the time.

I had my gall bladder out also due to Rocephin in August of this year). I have been on IV meds for 5+ months now. I had a PICC line last year, now I have a Groshong port in my chest. See picture attached. (If it works right!)

My insurance company just approved me for IV meds and home health nurse through March 2010. :faint:

I have to remind myself to take it day by day, otherwise, I think I'd loose my mind. When I had the PICC line I also had the "ball of medicine" but with the Groshong, I use an IV pole that works by gravity twice a day. the med I am on now is Cefotaxime, 2 grams at a time, over a 30 minute period. By the time I flush the line, get the line ready, sterilize the cap of my port, infuse and clean up 45 minutes have gone by.

Well hopefully this works. I know it feels like it takes control of your entire life. Just stay strong and hopefully it wont have to stay in till March :fingerscrossed:

I had to have my gall bladder removed in December '08. When I started complaining about pain my doctor told me the medicine can cause problems. He immediately switched me but the damage was done. The pain of a gall stone may of been worse then a contraction during labor.

Keep us updated. I used Equinox drug company and they were terrible and clueless. If you use them, I hope you have better luck.

Didn't it take you a terrible, long time to get a diagnosis?

Yes, about six months. Even though I knew the first time I took her in she had lyme. :mad:

Lyme is going to be different depending on the individual so there is no single treatment that is better than the other. Zoe did great on amoxicillon, which isn't nearly as hard on the system as some of the other antibiotics out there.

Yes, about six months. Even though I knew the first time I took her in she had lyme. :mad:

Lyme is going to be different depending on the individual so there is no single treatment that is better than the other. Zoe did great on amoxicillon, which isn't nearly as hard on the system as some of the other antibiotics out there.

I'm glad that she is doing well now.

I'm glad that she is doing well know.

She's perfectly fine now. Hasn't had symptoms since he took her off of her antibiotics and that's been 7-8 years, so if you stick with the treatments there is hope that you can kick it. I got lyme about two years ago, but caught it quickly so I just did a month of doxy with no problems since.

See... I can't do all that.... I just can't..... You are so incredibly brave....


I am ok taking the doxy by mouth... but this talk of IV and flushing lines and infusing.... it's just worse than the nerve damage to me....

I went to one doctor's office and the cure was worse than the problems I was having.... [well still am having]... the meds they gave me are [to me] worse than the lymes.....

Sure I am exhausted all the time, and I sometimes fall down for no reason, and I go blind sometimes, and my face droops sometimes for no reason, and I can't swallow sometimes, and my joints ache sometimes, and I hear noises sometimes, and I have axiety attacks sometimes, and I can't sleep sometimes, and I'm gaining all kinds of weight, and on and on and on.....I never feel good anymore, and on and on and on..... but all that's better than the zoned out, weird dreams, zombie state that medicine put me in.....

Don't any of you weigh the cure against the pain? Am I the only one that draws a line? I am avoiding all talk of PICC because I know I cannot deal with that.... I know me.... I am not the kind of person who can do that.... besides... I am prone to MRSA.... a picc would definitely get infected.... [B]I would be in a constant state of fear!

Have you checked into the alternative medicine route? It might be the way for you to go. The support group on mdjunction.com have quite a few people who have been treating lyme that way. They seem to have had some success. The problem with lyme is if not treated it does get worse. Some people have even had ALS symptoms which include paralysis.

if you stick with the treatments there is hope .

I have good days and bad days.

See... I can't do all that.... I just can't..... You are so incredibly brave....


I am ok taking the doxy by mouth... but this talk of IV and flushing lines and infusing.... it's just worse than the nerve damage to me....

I went to one doctor's office and the cure was worse than the problems I was having.... [well still am having]... the meds they gave me are [to me] worse than the lymes.....

Sure I am exhausted all the time, and I sometimes fall down for no reason, and I go blind sometimes, and my face droops sometimes for no reason, and I can't swallow sometimes, and my joints ache sometimes, and I hear noises sometimes, and I have axiety attacks sometimes, and I can't sleep sometimes, and I'm gaining all kinds of weight, and on and on and on.....I never feel good anymore, and on and on and on..... but all that's better than the zoned out, weird dreams, zombie state that medicine put me in.....

Don't any of you weigh the cure against the pain? Am I the only one that draws a line? I am avoiding all talk of PICC because I know I cannot deal with that.... I know me.... I am not the kind of person who can do that.... besides... I am prone to MRSA.... a picc would definitely get infected.... [B]I would be in a constant state of fear!

Do you have kids?

I'm on my first week of antibiotics and the dr. is already talking about a picc line. I had lyme about 10 years ago and had a picc line - it really isn't that bad. You learn to live with it. You don't feel the flushing of the line or the medicines 99% of the time. To me, the worst part was actually getting the thing put in and taken out.

Of course I don't *want* a picc line - but I am having pretty bad neurological symptoms, and the dr. says that once that occurs, it is safe to assume that an IV course of abx is needed. In other words, I didn't catch it right away.

Hot Coffee, you might not want a picc line - but please know... the symptoms will get WORSE. Trust me - I was the same way the first time and I put off the picc line for a long time. By the time I agreed to it, I couldn't walk straight, couldn't remember what I had eaten for breakfast, was having horrible nerve pain... to the point that one dr. suggested a brain tumor in addition to the lyme (an MRI confirmed that wasn't the case...) I HAD to get the picc line - or I wouldn't have any sort of life. You have kids - you have to be around for them. I have kids too and that is why I am not going to put off the picc line this time around. Whenever the dr. says I need it, I'll be at SMH to have it put in. Yep, it sucks - but life sucks... LOL No really I count my blessings every day - things could ALWAYS be worse. Lyme isn't terminal - I will still have my family around and they will have me. It isn't cancer or some other incurable terminal disease. So while lyme does suck, and having a picc line sucks - things could be worse and I count my blessings every day and I will do what I need to do to be able to take care of my family and not be sick, unable to drive, unable to hold a conversation, etc.... I hope you will reconsider the picc line.

I'm on my first week of antibiotics and the dr. is already talking about a picc line. I had lyme about 10 years ago and had a picc line - it really isn't that bad. You learn to live with it. You don't feel the flushing of the line or the medicines 99% of the time. To me, the worst part was actually getting the thing put in and taken out.

Of course I don't *want* a picc line - but I am having pretty bad neurological symptoms, and the dr. says that once that occurs, it is safe to assume that an IV course of abx is needed. In other words, I didn't catch it right away.

Hot Coffee, you might not want a picc line - but please know... the symptoms will get WORSE. Trust me - I was the same way the first time and I put off the picc line for a long time. By the time I agreed to it, I couldn't walk straight, couldn't remember what I had eaten for breakfast, was having horrible nerve pain... to the point that one dr. suggested a brain tumor in addition to the lyme (an MRI confirmed that wasn't the case...) I HAD to get the picc line - or I wouldn't have any sort of life. You have kids - you have to be around for them. I have kids too and that is why I am not going to put off the picc line this time around. Whenever the dr. says I need it, I'll be at SMH to have it put in. Yep, it sucks - but life sucks... LOL No really I count my blessings every day - things could ALWAYS be worse. Lyme isn't terminal - I will still have my family around and they will have me. It isn't cancer or some other incurable terminal disease. So while lyme does suck, and having a picc line sucks - things could be worse and I count my blessings every day and I will do what I need to do to be able to take care of my family and not be sick, unable to drive, unable to hold a conversation, etc.... I hope you will reconsider the picc line.

Thanks for the encouragement.... I think the picc is coming but I swear... I would really rather have a time machine...:coffee:

Well here are the facts in my case:

Had a test last year at a previous doctor-Negative
Have no symptoms at all for Lyme disease
Have a negative lyme test which says on both sections NEGATIVE
Have 2 out of 10 bands on one part
Have 1 out of 3 bands on the other
Labcorp confirms the results of the test are negative.

The doctor gets this same test/blood work and tells me: You are POSTIVE for Lyme disease, you have 5 of the 10 bands. How is it he can't read the test?

I sent it to another doctor for a 2nd opinion, their diagnoisis: NO LYME.

How can a test say negative, only have 2 of hte required 5 bands and have no symptoms but yet a doctor says I have and is treating me for lyme?

See... I can't do all that.... I just can't..... You are so incredibly brave....


I am ok taking the doxy by mouth... but this talk of IV and flushing lines and infusing.... it's just worse than the nerve damage to me....

I went to one doctor's office and the cure was worse than the problems I was having.... [well still am having]... the meds they gave me are [to me] worse than the lymes.....

Sure I am exhausted all the time, and I sometimes fall down for no reason, and I go blind sometimes, and my face droops sometimes for no reason, and I can't swallow sometimes, and my joints ache sometimes, and I hear noises sometimes, and I have axiety attacks sometimes, and I can't sleep sometimes, and I'm gaining all kinds of weight, and on and on and on.....I never feel good anymore, and on and on and on..... but all that's better than the zoned out, weird dreams, zombie state that medicine put me in.....

Don't any of you weigh the cure against the pain? Am I the only one that draws a line? I am avoiding all talk of PICC because I know I cannot deal with that.... I know me.... I am not the kind of person who can do that.... besides... I am prone to MRSA.... a picc would definitely get infected.... [B]I would be in a constant state of fear!

hotcoffee,

Let me first say I haven't read this entire thread but from this post alone I have to give my opinion. YOU are the sole person RESPONSIBLE for your health YOU have to be your own advocate. Do you WANT to get BETTER? Please don't take this the wrong way it's not my intention to be rude or judgmental. If you had cancer you would treat it right? Lyme disease should be taken seriously and the treatment should be as well.I have Lyme disease and my last treatment was for 7 months straight daily Iv antibiodics.I too was concerned I couldn't give myself the daily treatment that is why I had my better half do it for me. Do you have someone who could possibly help you? I have anxiety issue's I have issue's sleeping I have a lot of the issue's you have as well. My point is this you really need to decide what is more important to you getting well or worrying about all of the things you might have to deal with if you get Iv treatment. You know you should be happy their is a treatment for this yes it may not be 100% effective but their are so many illnesses and disease that have no treatment at all. Like I said I am not trying to be rude but please reconsider Iv treatment yeah it sucks but not having the treatment will be so much worse long term . If you have any questions pm me:)Take care..

hotcoffee,

Let me first say I haven't read this entire thread but from this post alone I have to give my opinion. YOU are the sole person RESPONSIBLE for your health YOU have to be your own advocate. Do you WANT to get BETTER? Please don't take this the wrong way it's not my intention to be rude or judgmental. If you had cancer you would treat it right? Lyme disease should be taken seriously and the treatment should be as well.I have Lyme disease and my last treatment was for 7 months straight daily Iv antibiodics.I too was concerned I couldn't give myself the daily treatment that is why I had my better half do it for me. Do you have someone who could possibly help you? I have anxiety issue's I have issue's sleeping I have a lot of the issue's you have as well. My point is this you really need to decide what is more important to you getting well or worrying about all of the things you might have to deal with if you get Iv treatment. You know you should be happy their is a treatment for this yes it may not be 100% effective but their are so many illnesses and disease that have no treatment at all. Like I said I am not trying to be rude but please reconsider Iv treatment yeah it sucks but not having the treatment will be so much worse long term . If you have any questions pm me:)Take care..

I concur 100%. Take it from someone who went YEARS before getting the IV treatment that I am on now. Am I "fixed"--no way. Am I "better off" than before I started the IV meds--absolutely!

The sooner you start the infusions, the sooner the end will come, IMO.

Yes, it does take dedication, but you get used to it, just like anything else "new" that you introduce into your schedule. Pretty soon it becomes almost 2nd nature. And as doubtfull24 asked: Do you really want to be better?

If the answer is yes (and I am SURE it is), PM me and I'll give you my phone number and you can ask ANY question that you may have. Lymies have to stick together, and help each other out.

A little anxiety about the IV infusions is NOTHING compared to the anxieties that you will be dealing with if you do nothing. That I CAN promise you.

Hugs,

Purplefox

If the doctor says he wants me to do IV... I will....

I'm just praying he won't have to say that....

Not looking good tho.... have any of you had spots in front of your eyes? I don't mean the black spots and wavy lines... I've had those on and off for a long time... but now I'm having something new....

It's almost as if someone has etched a circle in the clear window of my eyes.... know what I mean... it's a circle that is seen by both eyes... seems to be on the left but it really isn't.... I can see around it clear but I can't see thru it.... It's like it's etched.... first there was only one... then there were 4 or 5 of them... then they all went away....

Has anyone experienced that one?

If the doctor says he wants me to do IV... I will....

I'm just praying he won't have to say that....

Not looking good tho.... have any of you had spots in front of your eyes? I don't mean the black spots and wavy lines... I've had those on and off for a long time... but now I'm having something new....

It's almost as if someone has etched a circle in the clear window of my eyes.... know what I mean... it's a circle that is seen by both eyes... seems to be on the left but it really isn't.... I can see around it clear but I can't see thru it.... It's like it's etched.... first there was only one... then there were 4 or 5 of them... then they all went away....

Has anyone experienced that one?

I think I know what you mean - I've had either the same or something similar going on for the last couple of weeks, even though I wouldn't know how to describe it. They aren't floaters (the black dots) - I have those as well. This is a circle, that like you said, you can see around - but looking through it, it's almost like it is blurred or something. Hazy. You can sort of see through it but not really. And it doesn't take up my entire sight - yet it bothers it enough that I can't really 'see' clearly until it goes away. I've found that by blinking a few times or taking a 'time out' with my eyes closed for a minute or two, then blinking a few times, they go away. Not sure if yours are the same. Mine don't say all day - they just come and go at random times and I have to blink blink blink to get them to go away.

And yes, hotcoffee that is a neurological symptom - I had those last time I had lyme. I really do think that you are going to need IV antibiotics - I know that you are afraid, and for good reason - I was afraid before I had them with my last lyme bout. I'm still scared and sad, mainly for having lyme again and having to go through this again. Anytime you have an IV in, it's a little scary. BUT it's in there for a reason.... and you should start to feel a big shift after a week or two - and after 3 months or however long your doctor schedules them for, you should feel like a different person. I know I did last time... I was doing things that I hadn't done for years. It was actually just after I got better that I met my hubby - some of the best years of my life. One day you will feel so much better and this will be behind you - but it takes a little 'work' along the way. And PLEASE know that you can get lyme disease twice - this is my second bout with it - so be vigilant if you get bitten again. The time between bite and diagnosis/meds can mean all the difference in the world....

I think I know what you mean - I've had either the same or something similar going on for the last couple of weeks, even though I wouldn't know how to describe it. They aren't floaters (the black dots) - I have those as well. This is a circle, that like you said, you can see around - but looking through it, it's almost like it is blurred or something. Hazy. You can sort of see through it but not really. And it doesn't take up my entire sight - yet it bothers it enough that I can't really 'see' clearly until it goes away. I've found that by blinking a few times or taking a 'time out' with my eyes closed for a minute or two, then blinking a few times, they go away. Not sure if yours are the same. Mine don't say all day - they just come and go at random times and I have to blink blink blink to get them to go away.

And yes, hotcoffee that is a neurological symptom - I had those last time I had lyme. I really do think that you are going to need IV antibiotics - I know that you are afraid, and for good reason - I was afraid before I had them with my last lyme bout. I'm still scared and sad, mainly for having lyme again and having to go through this again. Anytime you have an IV in, it's a little scary. BUT it's in there for a reason.... and you should start to feel a big shift after a week or two - and after 3 months or however long your doctor schedules them for, you should feel like a different person. I know I did last time... I was doing things that I hadn't done for years. It was actually just after I got better that I met my hubby - some of the best years of my life. One day you will feel so much better and this will be behind you - but it takes a little 'work' along the way. And PLEASE know that you can get lyme disease twice - this is my second bout with it - so be vigilant if you get bitten again. The time between bite and diagnosis/meds can mean all the difference in the world....


Thanks... that's really encouraging....

It's a rough day today.... I have the jitters all over today and dull drums too.... oh and I could bite a rattlesnake if provoked....

I don't know what hubby has in mind today... but if entails anything more than lying on the sofa and watching tv... I'm in a real pickle...;)

Thanks... that's really encouraging....

It's a rough day today.... I have the jitters all over today and dull drums too.... oh and I could bite a rattlesnake if provoked....

I don't know what hubby has in mind today... but if entails anything more than lying on the sofa and watching tv... I'm in a real pickle...;)

If hubby wants to do something that takes energy, just remind him of this:

oh and I could bite a rattlesnake if provoked....

If hubby wants to do something that takes energy, just remind him of this:

oh and I could bite a rattlesnake if provoked....

:killingme:killingme:killingme

He brought home two movies....:popcorn:

:killingme:killingme:killingme

He brought home two movies....:popcorn:

Good man. Must really be attached to his testicles! :killingme

After ya'll had your PICC put in, were you sore?

After ya'll had your PICC put in, were you sore?

I know I was. Have you had yours done yet? If so, how long has it been?

I know I was. Have you had yours done yet? If so, how long has it been?

Were you able to go to work the next day?

I don't have mine yet. Waiting for a final letter from my insurance.

Were you able to go to work the next day?

I don't have mine yet. Waiting for a final letter from my insurance.

Yes, but I was sore. It really hurt to lift my arm over my head for a couple days. But after that, it was a piece of cake. Except showering, that was always a PIA.

Yes, but I was sore. It really hurt to lift my arm over my head for a couple days. But after that, it was a piece of cake. Except showering, that was always a PIA.

Do they put it in your left or right arm?

Do they put it in your left or right arm?

They usually put it in the arm that is NOT your primary hand. I'm right handed, so they put it in my left upper arm. Here, I'll attach a photo of when I had my PICC. This was last year:

They usually put it in the arm that is NOT your primary hand. I'm right handed, so they put it in my left upper arm. Here, I'll attach a photo of when I had my PICC. This was last year:

You really like purple, huh? :lmao:

Well that won't be as much of a PIA then.

You really like purple, huh? :lmao:

Well that won't be as much of a PIA then.

:killingme I didn't notice that!!

The PICC was a lot easier to deal with than the chest port that I have now.

:killingme I didn't notice that!!

The PICC was a lot easier to deal with than the chest port that I have now.

Really? Why is that? I would think the chest port would be easier to deal with :confused:

Hi everyone! There is another support group JUST forming, it is being started as ONLINE only, for the time being until the "kinks" are worked out. (Most of us go to the Support Group at the Calvert hospital as well.) The new group is NOT for Calvert County residents only, ANYONE can join in. You can't get enough info on LD. If we get enough people into this group it could branch out!
Here is the link: CalvertCountyLyme :

Hi everyone! There is another support group JUST forming, it is being started as ONLINE only, for the time being until the "kinks" are worked out. (Most of us go to the Support Group at the Calvert hospital as well.) The new group is NOT for Calvert County residents only, ANYONE can join in. You can't get enough info on LD. If we get enough people into this group it could branch out!
Here is the link: CalvertCountyLyme :

Is this the link you are trying to post everywhere? :confused:

CalvertCountyLyme : Calvert County Lyme (http://health.groups.yahoo.com/group/CalvertCountyLyme/)

Have any of you had the MRI done yet?
I saw the Dr. today and he wants the MRI done ASAP.
Then the intravenous IV, in the chest.


It's getting bad here.

Have any of you had the MRI done yet?
I saw the Dr. today and he wants the MRI done ASAP.
Then the intravenous IV, in the chest.


It's getting bad here.

I have an MRI scheduled.... I had one a few months ago but something's changed....

Have any of you had the MRI done yet?
I saw the Dr. today and he wants the MRI done ASAP.
Then the intravenous IV, in the chest.


It's getting bad here.

Are you talking brain MRI? I've had several, and am due to get another one with and without contrast week after next. Yes, the Lyme is in my brain.

Are you getting a Groshong Port? And if so, who is your Surgeon? I hope it's Dr. Pfalz, he did mine and I love him.

I have to go see him next week. It's time to get my port out. At this point, they believe it is doing more harm than good. It's basically chemo. I have been infusing 2 times a day (4 grams total) for 6 months now.

My doc just did a blood test (I had to pay up front for it-$660) for Bartonella as a possible co-infection. I already know I have Rocky Mountain Spotted Fever, and Bartonella is a rare tick disease that is masked when it is a co-infection of the Lyme.

geez, hope ya'll get to feeling better soon! I'm feeling pretty good lately and don't even have my PICC yet.

Any of ya'll use Synergy? Have you had any problems with them? Friend of a mine got 2 batches of expired rocephin and the nurse never show up yesterday to change their bandage. No call. Nothing.

Are you talking brain MRI?
Yes.
Are you getting a Groshong Port? And if so, who is your Surgeon? I hope it's Dr. Pfalz, he did mine and I love him.
Yes, no idea..[/QUOTE]

Who was the doctor that your sister went to?