Please Help Me Make a Decision!

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scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/24/2009 12:44 PM (GMT -7)   
The approval from the insurance company finally came through to have a PICC line inserted and IV Rocephin started.  My doctor's office informed me that the doctor will be out of the office until the second week in March and the PA will be back next week.  I went ahead and made an appointment to have to have the PICC line inserted at the hospital on Friday and an infusion nurse is scheduled to come to the house on Saturday. 
 
Do you think I'm making a mistake by not waiting until my doctor is back in the office? 
 
Oh yeah, if I have it done this Friday a friend will be able to go with me.  If I wait until my doctor comes back I will need to go alone.  I've been through many procedures in the past and never needed anyone with me but for some reason I'm experiencing quite a bit of anxiety over this and for the first time feel as if I really need someone with me. 
 
Also, I've been on Minocycline, Azithromycin and Mepron, in addition to taking various supplements including Super Artemisinin.  Is is normal procedure to continue taking these in addition to the IV?
 
I realize this is a decision that I have to make but I would really appreciate hearing your opinions.
 
I apologize for the long, scrambled post.  I'm really nervous and not thinking too clearly.
 
Thanks.
 
 

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 2/24/2009 3:28 PM (GMT -7)   
Having a friend to go with you = priceless.  I know you've been having anxiety over the PICC line.  I'm not to that point yet, but I have a mini-phobia about needles, IV's and such.  I'd feel just like you do.
 
It's so great to have someone there for emotional support and help you with any details you might forget.
 
The hospital, infusion nurse and PA would all help if needed.  I wouldn't be surprised if the PA has more "hands on" experience with this stuff than your doc. 
 
Unless you're uncomfortable with your PA for some reason - well, if it was me, I'd definitely go when a friend could be there to help.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


studeski
Regular Member


Date Joined Dec 2007
Total Posts : 62
   Posted 2/24/2009 4:25 PM (GMT -7)   
It's not unusual to take Azithromycin and Super Artemisinin with the IV Rocephin. Take them both once a day on the same days you get the Rocephin. I say that because many times the schedule is 4 days on and 3 days off.

Claude

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 2/24/2009 5:07 PM (GMT -7)   
I agree that many PAs are better than the docs. Get it done and blessings to you.
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!


scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 2/24/2009 5:42 PM (GMT -7)   
Thank you all so much for your responses. I think subconsciously I was looking for a reason to postpone having it done. lol I'm usually very brave - really I am! ****

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 2/24/2009 6:49 PM (GMT -7)   

Hi scorpio1960.  I agree that you should go ahead and have the line put in and have your friend go with you.  What dose of Rocephin will you be infusing?

Getting an IV line seems very overwhelming, but it is typically a very easy procedure.  I think knowing ahead what to expect can help you feel less anxious.  It does not usually take very long.  I found the steps listed below from Googling PICC line insertion:

How is the PICC Line Inserted?

  1. A nurse may use an ultrasound machine to find the veins in your upper arm.
  2. The nurse cleans your arm and covers it with a sterile cloth to prevent infection.
  3. The nurse places a tourniquet on your arm.
  4. You get a numbing medicine.
  5. The nurse puts a small needle into the vein, inserts the introducer needle, and guides the PICC line into the vein near your heart.
  6. You have a chest x-ray afterwards to make sure that the PICC line is in the right place.

You can also find videos of PICC line insertion on-line.  It also may seem overwhelming learning how to infuse, but it does not take long to get the hang of it.  The nurse will help you until you are comfortable doing it on your own.  The most important thing is to keep the site clean and dry at all times.  An infection can be dangerous.  If you ever have a question about your line, call your doctor or nurse ASAP.

You can get a sleeve to cover the site so you can shower without getting it wet.  It is called a Mid-Arm Protector.  One place that has these is Brown Medical https://www.brownmed.com/Products/StoreProductDetail29.cfm?StoreProductId=99 but I believe some pharmacies and hospital supply companies also have them.

You need to ask your doctor about which oral meds to continue with while you are on IV.  It sounds like you are taking a lot and he/she may not want you on all of them with the Rocephin.

Good luck on Friday!  Let us know how it goes.

Post Edited (ticker) : 2/24/2009 6:52:06 PM (GMT-7)


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/24/2009 10:24 PM (GMT -7)   
Ticker, Thank you for all the great information.

I think it's IV Rocephin 2 gms daily. I'm having a hard time reading the doctor's handwriting so I'm not sure if this amount makes any sense. lol

I already ordered the mid-arm protector after reading about it somewhere on this forum.

I do plan on calling the doctor's office tomorrow to ask if I should continue with all of the meds I'm already taking. I believe both the doctor and PA are out of the office this week so hopefully someone will be able to tell me.

I realize this is not a difficult procedure but for some reason I have a very hard time with anything that entails veins and just can't seem to rationalize it no matter how hard I try. I guess it's some sort of phobia that I had better get over and quick. lol The doctor's office called in a prescription for me so I can take a valium one hour before and with the way I've been carrying on I think the friend who is going with me might need to take one just to deal with me. Just kidding! lol The friend is actually an ex and even he is shocked at the way I'm handling this because it's so out of character for me.

Thanks again for all the responses and encouragement.

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 2/25/2009 5:55 AM (GMT -7)   

scorpio1960, you are welcome.  Two grams of Rocephin is in the dose for Lyme treatment.

You are funny saying your friend will need to take a Valium too!  Hopefully it will help you.  Sometimes things seem worse when we don't understand them.  Look at getting the line in as the next step to getting well.

Let us know how it goes.

 


bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 2/25/2009 7:18 AM (GMT -7)   
Scorpio 1960,

Your arm may be sore for the first day or two so be sure to put a heating pad on it. Take some ibuprofin if you can tolerate it. After that you most likely won't even feel it and after a while you will get very proficient at giving yourself the medicine. You were a brave lady before and you will continue to be one.

Having a good home care nurse is important for your morale. If you have any problems with yours being punctual, supportive, or anything, then ask for a change.

I have had many PICC lines put in and never had an infection or problem. You will be ok. I am glad your friend is going with you to hold your hand. Remember the radiology team does this all day long in a hospital so they are pros and they will be able to see exactly what they are doing.

Take care and you CAN do this!

bcaring

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 2/25/2009 10:22 AM (GMT -7)   
Hi Scorpio1960,
Just something I thought I would mention.  When I saw Dr. C. in Tampa, he suggested doing a test dose in his office before having the PICC line inserted.  His thought was if you have a bad reaction to the Rocephin better to find out before you spend the money for the PICC line.  Just thought it was worth mentioning!
Good Luck, KO
 
P.S.  I would suggest having someone go with you if possible, I think it's a really good idea!

2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol 


Seibertneurolyme
New Member


Date Joined Feb 2009
Total Posts : 19
   Posted 2/25/2009 11:12 AM (GMT -7)   

I would go ahead and get this done and over with. The longer you wait the more anxious you will be.

Hubby has had a PICC line in continuously for 6 years now -- in one arm or the other. He has never had any major problems. Used to have to give him IV seizure meds for many years. Also was used for IV glutathione and IV vitamin C and IV magnesium.

On occassion IV pain meds and IV nausea meds.

You are lucky to have a nurse to come to your home. Insurance would not cover home health care, so the doc trained me to give hubby his IV antibiotics and everything else I listed.

Just make sure you flush the line like instructed. Might be a good idea to take something like Wobenzyme or Vitalzym for hypercoagulation. Hubby had to have some lines replaced early on due to hypercoagulation issues.

Just start slow with any enzymes if you have never taken them before.

Bea Seibert

 

 

 

 


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 2/25/2009 11:28 AM (GMT -7)   
SeibertNeurolyme, 
I've always wondered how do they tell you have hypercoagulation?  What test do they run?
I've read that it is a common issue with Lyme, but I don't think any doctor has ever mentioned it to me, or tested me for it as far as I could tell.  Unless it is part of the CBC?
Thanks, KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol 


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 2/25/2009 11:56 AM (GMT -7)   
I think they really have to run different tests; if you like to look deeper:
http://www.muschealth.com/lab/content.aspx?id=150094
http://arpa.allenpress.com/arpaonline/?request=get-document&doi=10.1043%2F1543-2165(2007)131%5B864:QAPOLH%5D2.0.CO%3B2

Seibertneurolyme
New Member


Date Joined Feb 2009
Total Posts : 19
   Posted 2/26/2009 5:24 PM (GMT -7)   
With severe hypercoagulation fibrinogen may be elevated. Quest or LabCorp can run this test.
 
A more specialized test is from HEMEX laboratory -- it used to cost about $400 but may be higher now. The test most used is the ISAC panel -- Immune System Activation of Coagulation.
 
 
Bea Seibert

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 2/26/2009 5:38 PM (GMT -7)   
scorpio1960, how did it go?

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/26/2009 10:33 PM (GMT -7)   
Well, my appointment tomorrow to have the PICC line inserted has been rescheduled for next Wednesday. Due to a major plumbing problem that could not be taken care of until tomorrow, I really had no choice. I guess it works out well because that's the day the PA is back in my doctor's office.

I'm not surprised in the least at how I'm dealing with the thought of having a PICC line inserted (lol) and I'm sure I'll be just fine but I have become very aware of my inability to deal with just about anything at all. I become extremely stressed and overwhelmed over the slightest little thing. This has become much worse since starting antibiotics a few weeks ago and I'm starting to realize that I'm turning into a complete nut case. lol

The friend who is coming with me for the procedure happens to be an ex and he spent yesterday and today with me dealing with the maintenance people coming in and out of my apartment and scheduling the necessary work because basically I was incapable. In between my many meltdowns we had quite a few really good laughs at how bizarre I was acting. lol The slightest thing can now send me into a rage or an emotional meltdown where I can't stop crying.

He was really quite a trooper dealing with all of my outrageous outbursts, demands, attitude and meltdowns but when he left my house this afternoon, I'm pretty sure he stopped for a few drinks on the way home. lol I told him he should consider yesterday and today a test run and since he passed with flying colors he'll be just fine on Wednesday. Now we have to worry about me. LOL

I have been noticing a change in how I handle things since becoming sick but I always attributed it to being physically sick and also having cognitive problems that frustrate the heck out of me. Understandably, I also have felt depressed since going on disability but now I experience uncontrollable intense crying fits that pass as quickly as they come. Before becoming sick, I was always pretty much in control and now I feel totally out of control.

Has anyone else experienced this when they started antibiotics and if so how far into treatment will it begin to subside? Please tell me it does end. lol

Thank you all so much for all the great advice and for your support and encouragement. It has helped me so much more than you can imagine.

I'll be back after the procedure to give an update and let you all know how well I handled it and how brave I was (lol) - thanks to all of you.

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 2/26/2009 11:56 PM (GMT -7)   
I'm having the same thing - periods of being really emotional and then depressed.  My llmd said that would happen during treatment.  I think I have been treated for just a little longer than you have. 
 
Partly due to the Lyme I think, I have treatment resistant depression.  Lamictal does a pretty good job on the depression - and it's also a mood stabilizer.  Plus Klonopin for anxiety.  Without those - my emotional times would be total meltdowns. 
 
I can't deal with much stress at all.  Don't know what I'd do without my wife to help me with the insurance, etc.
 
Maybe it would be good to see a pdoc about helping to control the psychiatric symptoms?  Anyways, you're definitely not alone in this.
 
Hang in there, Scorp.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/27/2009 6:25 AM (GMT -7)   
Thanks Rich. I'm glad you have your wife to help out.

I definitely will speak to my doctor about this at my next appointment. I originally thought I felt this way because I was overwhelmed with the diagnosis and treatment but now I realize that it's much more than that and is probably due to the antibiotics stirring things up. The last few days I also have been sleeping a lot less even though I'm totally exhausted. At times, I feel as if my entire insides and brain are vibrating or shaking, which I never experienced before in my life. I never even knew what a nervous stomach was and the vibrations in the head are just so weird and scary. Up until this past week, I could barely pick my head up off the pillow and slept about 15-20 hours a day. Maybe because I'm awake more, I'm more aware of my mental condition. lol

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/27/2009 6:31 AM (GMT -7)   
Rich, What meds are you taking for the lyme?

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 2/27/2009 6:42 AM (GMT -7)   

scorpio1960, I am sorry you are having plumbing problems on top of everything else.

Have you been tested for co-infections?  Both Lyme and Bartonella can cause the rages you describe.

Lyme can cause emotional symptoms and depression in some people.  It is also hard to deal with so many symptoms and so many life changes from the disease.  Try not to be hard on yourself.  These things will get better with treatment.

Hang in there okay?


scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 2/27/2009 6:54 AM (GMT -7)   
Thanks Ticker. I have not gotten the results from Igenex yet but my doctor is positive I have co-infections due to the numerous symptoms I have and the severity.

georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 2/27/2009 7:36 AM (GMT -7)   
scorpio1960, when you have your picc lline placed make sure it is not agrivating your heart (palpitations). Hang out for a while, if you can lie down on both sides with your arm above your head. Basically move around, bend over, etc.
I had 2 picc lines to cause heart palps. The doctor will simply pull it out a couple of cm. That should fix it. But don't wait till you get home, it's best not to have to go back! I learned the hard way.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/27/2009 9:40 AM (GMT -7)   
georgiagirl, Thanks for the great tip. That's the last thing I need at this point and I'm sorry you had to go through it.

georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 2/27/2009 6:50 PM (GMT -7)   
Good luck. You'll be fine.
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