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Old 09-17-2007, 02:56 PM   #1
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Join Date: Sep 2007
Location: Taos, NM, USA
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andrea07 HB User
Hello I am New to this Board looking for feedback Please

I tested positive in June of this year, I have been making trips up to Wisconsin for the past 3yrs, I got bit by a tick in May of this year on my trip. I was ill the 3rd day of the trip, it is a long story and such a blurr....The doctor is in belief that I may have been bit in past trips I made to Wisconsin, every time I visted the state I would camp out.

I have just finished a dose of Rocephin IV for the past month because the oral antibiotics were not doing it, I had to have th PICC line removed due to infection on the PICC line and I am now looking at another round of antibiotics, I also reacted to the Rocephin so they are now having me do Cefotaxime. I am going to have to do these infusions from home because of the regement of dosage it is not possible to do at the Day Med where I live. Have any of you had to do infusions from home? If so how was it, I have fear around it and would like some feedback on it. I would like to just wake up and it has all gone away and it was just a bad dream!!!

 
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Old 09-17-2007, 08:59 PM   #2
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Join Date: Jan 2002
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Hello I am New to this Board looking for feedback Please

Hi Andrea, welcome to the board!

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous, aggressive treatment. The sooner you get proper treatment, the better.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. Have you been tested for these? Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This was true in my case.

If you need a doctor recommendation, let us know.

How will you be doing the infusions since the PICC line was removed? Many people do infusions at home. It seems scary and overwhelming in the beginning, but it is really easy once you get the hang of it.

What kind of reaction did you have to the Rocephin? Are you aware of the Jarisch-Herxheimer Reaction (herx)? Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

During treatment, it is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.

Hang in there okay? Good help is available, and you are not alone.

 
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Old 09-18-2007, 03:13 PM   #3
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Join Date: Sep 2007
Location: Taos, NM, USA
Posts: 13
andrea07 HB User
Re: Hello I am New to this Board looking for feedback Please

Quote:
Originally Posted by ticker View Post
Hi Andrea, welcome to the board!

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous, aggressive treatment. The sooner you get proper treatment, the better.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. Have you been tested for these? Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This was true in my case.

If you need a doctor recommendation, let us know.

How will you be doing the infusions since the PICC line was removed? Many people do infusions at home. It seems scary and overwhelming in the beginning, but it is really easy once you get the hang of it.

What kind of reaction did you have to the Rocephin? Are you aware of the Jarisch-Herxheimer Reaction (herx)? Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

During treatment, it is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.

Hang in there okay? Good help is available, and you are not alone.
Ticker,

Thank you for replying to my posting, I am not sure I am replying correctly I chose quote reply?? The list you sent me was very benificial thank you, my brother found a list with all of the symptoms mentioned on line also. I have been experiencing most of them in variuos forms since I begin feeling sick. I have co-infections w/babesiosis and ehrlichiosis. I did experience the herx after 4 treatments on the Rocephin, thank you for the suggestion on keeping a daily document of the symptoms. The reason I ws put on the cefotaxime is my gallbladder was removed a couple of years ago and Iwas experiencing pain like a gallbaldder atack on the rocephin and they stopped the rocephin.

I have not had any treatments since last Tuesday and I am feeling pain in my back and elbows and knees and my skin hurts and I have the numbing back in my hands and feet and my brain is not functining the way it should I have been waking up feeling very hung over and I dont drink, I ache pretty much all over for the past copule of days. The DR who is treating me is good he is from back east and lives in Santa Fe, NM now. I spent a couple of hours on thephone yesterday with the insurance company, they are going to put another port in my chest or arm area and they will pay for all the supplies and stuff associated with it but the antbiotic itself. The doctor is having to send in a written refferal for thie med. The Dr's name in Santa Fe is Daniel Kinderlehrer MD. I am also taking mepron and artimisinnin for one of the co-infections. I am being monitered by a Dr. White who lives in Taos for the infusions but they are both working for me so far. I will look up online what you have suggestd.

I guess I have been concerned about not being treatd right now but I am also feeling it is giving me time to gound myself to continue on with treatments wnen they do start up again.

My arms are aching fromtyping again I am going to stop, I would like to get reccomndations on doctors in my area to see if the dr i am seeign is on the list. I a so gratful finding this posting board I do not feel so alone.

andrea07

 
Old 09-18-2007, 05:41 PM   #4
Senior Member
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Join Date: Oct 2006
Location: usa
Posts: 183
mctassi HB User
Re: Hello I am New to this Board looking for feedback Please

Hi Andrea,
I live in albuquerque. I haven't been yet, but I have an app. with the same doc. in Santa Fe. I'm glad to hear the info on him. I got a referral on line.
Through one of the lyme associations. Also on another board. Yahoo. They have a NM lyme group. I don't spend much time there. Someone over there sees him also. She likes him. I don't know how her treatment is going though. There are only a few people. This board is easier and very active. I know there are not a lot of llmd's in NM. I only know of 2. Him and another female doc. in Santa Fe, but I don't even know her name. Take care. mc

 
Old 09-19-2007, 08:39 AM   #5
Junior Member
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Join Date: Sep 2007
Location: Taos, NM, USA
Posts: 13
andrea07 HB User
Re: Hello I am New to this Board looking for feedback Please

mctassi hello,
It is good to here from someone from NM. A friend of mine said that Kinderlehrer is the best in NM, he is good, thank you for the affirmation of this. Hope your appointment goes well, good luck. I am still waiting on starting up my treatments again, the hold up is with the insurance company. Had a rough night last night. Hope all is well thank you for your response.
andrea07

 
Old 09-25-2007, 09:42 AM   #6
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Join Date: Sep 2007
Location: Taos, NM, USA
Posts: 13
andrea07 HB User
Re: Hello I am New to this Board looking for feedback Please

Mctassi hey,

How r u...I got my picc line in yesterday I am going to start treatments tomorrow... You see the doc in SF or have you seen him already.
andrea07

 
Old 09-25-2007, 12:11 PM   #7
Senior Member
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Join Date: Oct 2006
Location: usa
Posts: 183
mctassi HB User
Re: Hello I am New to this Board looking for feedback Please

Hi andrea,
I haven't been yet. I go on the 3rd. Next week. This week I'm going to work on getting organized. Past tests, symptoms written down and when they started, ect.
How's the picc line? I hope you get use to it. How long have you been seeing that doctor? Is your insurance covering your meds. How many meds are you on? Also, let me know when you start to feel better. mc

 
Old 09-27-2007, 06:22 PM   #8
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Join Date: Sep 2007
Location: Taos, NM, USA
Posts: 13
andrea07 HB User
Re: Hello I am New to this Board looking for feedback Please

Hello Mctassi,

Good to hear from you. Good luck on your appt. How are you feeling how long have you been dealing with this disease?

I have been seeing the doc since mid-june of this year. This is my second picc line, I developed an infection on the first one I had. When I first strated treatments I was on Ciro/Biaxin/nystatine and mepron..w/artimisinin. When I started the first picc line the infusions were rocephin I am now on cefotaxime 3x week 3x a day M/W/Friday every 8hrs. I am doing them at home. I am also starting to take flagly and startd ack on mepron.

My insurance company is covering the meds so far they were not going to cover my latest meds but they are now.

I am not feeling to great right now I started my first treatment yesterday and had a real sharp pain in my chest this mroning and the noght sweats were back my body aches and the antibiotics upset my stomach. I will let you know when I start feeling better..Right now I am feeling my emotions and trying not to give up but I feel real sad my life has been turned upside down. I wake up some mornings hoping it was just a bad dream.

andrea07

 
Old 09-27-2007, 07:45 PM   #9
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Hello I am New to this Board looking for feedback Please

Hi Andrea. I am glad you have been tested for the co-infections. It is my understanding that Mepron (anti-malarial) needs to be taken with Zithromax, Biaxin, or Ketek to effectively treat Babesiosis. You may want to research this and ask your doctor.

In case you did not know, there is a great sleeve you can get to cover the PICC line so you can shower without getting the site wet. It is called a Mid-Arm Protector and you can get it at Brown Medical.

I am glad your insurance company is covering your treatment.

Hang in there okay? Keep us posted on how you are doing okay?

 
Old 09-29-2007, 02:16 PM   #10
Junior Member
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Join Date: Sep 2007
Location: Taos, NM, USA
Posts: 13
andrea07 HB User
Re: Hello I am New to this Board looking for feedback Please

Hey Ticker,
I was on bioxan and was taken off I will ask the doc and do my research about what works best with the mepron thank you.

I ordered a sleeve and it still has not arrived you had suggested it for another person so I looked it up. I was taking a shower this morning and got the area wet I had to call the nurse on call to get the dressing changed, my nerve endings are so sensitive on my arms it hurt real bad I do not think I am taking a shower until this mid-arm band arrives. I will let you all know how it is going I am real emotional these days..andrea07

 
Old 09-29-2007, 06:43 PM   #11
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Hello I am New to this Board looking for feedback Please

Hi Andrea. It is normal to feel worse before feeling better. I think it helps to know this.

Some people find the Glad Press and Seal saran wrap works well to cover the line. Maybe you can try this until the sleeve arrives?

Hang in there okay?

Last edited by ticker; 09-29-2007 at 06:43 PM.

 
Old 10-02-2007, 01:06 PM   #12
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Join Date: Sep 2007
Location: Taos, NM, USA
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andrea07 HB User
Re: Hello I am New to this Board looking for feedback Please

Hey ticker,

Thank you for all your words of encouragement. I recieved my sleeve today YEAH!!! I was beginning to smell a little...Ha! I am actually having a good day today, I woke up and my body ached but not as much as it has my head seems clearer then it has been in a long time. I am like a litlle kid I am just so happy to be able to take a shower without worrying that the line is going to get wet..

Thank you andrea07

 
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