Just returned from LLMD...

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Jendays247
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Date Joined Jul 2006
Total Posts : 652
   Posted 6/9/2009 10:50 AM (GMT -7)   
My LLMD says he wants me to get a PICC...and go on IV Rocephin...I'm waiting for my insurance to kick in (should be in a few days).
 
For now, I am on a Flagyl/Biaxin Combo and taking Diflucan along with that. The Flagyl is just one week/month.
 
As soon as he looked at my list of symptoms, he IMMEDIATELY suggested the PICC.
 
This is the time where my paranoia sets in about whether it's MS or Lyme...going to such drastic measures to treat something I may not even have...
 
I have to do it though. Have to.
 
Please share your experiences w/the above abx as well as Rocephin and PICC lines!
http://www.myspace.com/399827188


stutterbug
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Date Joined Jul 2007
Total Posts : 478
   Posted 6/9/2009 11:57 AM (GMT -7)   
I think this is a great thing. I know you must be really scared. You are really lucky to have found a doctor who seems to know the correct treatrment. good luck. amey

RottenDog
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Date Joined Apr 2009
Total Posts : 1013
   Posted 6/9/2009 12:01 PM (GMT -7)   
Jen this is great news really, once your on the road to treatment your on the road to better health. i am so happy your Dr. is willing to help you and doing it the right way too from what i have read. remeber you have all of us here for support.
   RD
                                                                                                                 
 
still looking for answers
 


Jendays247
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Date Joined Jul 2006
Total Posts : 652
   Posted 6/9/2009 12:02 PM (GMT -7)   
I am scared of the PICC...and of my response to Rocephin...I have teeny tiny veins...how ever will they get it in?!
http://www.myspace.com/399827188


RottenDog
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Date Joined Apr 2009
Total Posts : 1013
   Posted 6/9/2009 12:12 PM (GMT -7)   
belive me they know what they are doing and if they can do this with babies they can get your vain without a hitch. you may want to ask your Dr. to run alergy test on you b4 statring it if you have fears of a reaction. its just a thought
   RD
                                                                                                                 
 
still looking for answers
 


JELAINEP
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Date Joined Sep 2007
Total Posts : 2017
   Posted 6/9/2009 12:53 PM (GMT -7)   
I had NO problems with my PICC lines! They insert it and then use an Xray to make sure it's in place properly. If you feel ANY discomfort, let the nurses know! The PICC lines and the periphreal IV's that I have received have been the LEAST painful part of the process!

Take a deep breath, you should be just fine.... and of course, you have all of us nice CHARACTERS on this board to see you through it!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 6/9/2009 1:06 PM (GMT -7)   
Hi, Not sure what your backstory is. I was Dxed with MS back in 2005. I also tested positive for Lyme, my Oregon Drs would not treat it. I flew to Conneticut and got  Dxed of Nuero Lyme and a RX for 90 days of IV Rocephin.
 
I won't lie it was really hard on me but very worth it. When the 90 days were up I stayed on oral antibiotics and all symptoms were gone. We had a baby stayed on antibiotics still no symptoms. Baby has tested negative for Lyme and is healthy and happy. Breastfed for a couple months and when I stopped I also stopped antibiotics.
 
A few months later it's all back. I have alot of lesions in my brain and spine, affecting my walking mostly. After IV Rocephin all the lesions in my brain and spine were gone 2 years ago. Now I have all new ones.
 
So back to the land of confusion MS or Lyme. I go back to Conneticut in July and I sure hope I get IV meds again. I think they really helped me. 
 
 


Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 6/9/2009 1:49 PM (GMT -7)   
The PICC is not bad and if it is Lyme, you want it! I admit I was really nervous about it, too, but I had a good feeling that it was what I needed. Try to keep that in mind. You might want your valium that day if you are that anxious about it.

They will numb the area so all it feels like is like someone pinching your arm. It doesn't take long, about 45 min. to prep and insert. Remember to not wear metal, and take out any piercings. I was going to ask if I could listen to my mp3, but forgot, and found out that I wouldn't be able to anyway. They use ultrasound and put the tubing in with a wire inside that has a magnet at the end so they have a good idea that it is going where it needs to. They still send you to xray to be certain. The cool thing was that when I went over for the xray, the xray tech showed me the picture on the computer, so I got to see my heart. That was an amazing experience to me. I'm still not sure how to describe how I felt, but it was beautiful.

When I looked it up on line I saw that there are you tubes of a PICC line being inserted. I felt that I had enough of a visual, and was afraid to watch it before getting it done. The nurse who inserted it said that I should have watched it. I still haven't yet, but I do want to now that it's after the fact! Both of the nurses who worked together were excellent. I'll be praying that you receive as good of care where you are!

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 6/9/2009 2:13 PM (GMT -7)   
I never thought I would get a PICC line. It has been short of miraculous for me. I am receiving Claforan IV for Bartonella. I don't know your symptoms but if you are having significant mood symptoms talk to your doctor about Claforan, even before Rocephin. I believe that the reason people relapse os because of untreated co-infections. none of my tests were positive for Bart but because of my mood swings I treated for this first with Claforan and I have been feeling great, like my old self.

I do think that now that Bart is coming under control (my Babesia was already treated), I am now starting to have more Lyme symptoms (lack ambition, ditzy brain, don't care what I eat or do, could sleep away a day or two, joint pains/fibromyalgia like symptoms).

I don't know what lies ahead but think I will be doing Ceftriaxone next. I hadn't wanted the PICC line but becuase of the improvement I've had from it I would keep it for however many months are needed or advised even if it ruins my summer (no swimming, ugh).

Good luck. By the way I think the Press and Seal wrap was better than the arm thing you can buy and a lot cheaper. If the tape itches use ice and ask for the least itchy tape. The first dressing change is rough but after that you will look forward to them.

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 6/9/2009 2:18 PM (GMT -7)   
Really Lyme, How sad that you relapsed-- did you stay on herbs after antibiotics?? That is key- please everyone you can not get better with antibiotics alone. i grew up with Lyme and was able to lead a normal life using herbs to control cysts/tissue Lyme. You can use Samento (Cowden), Una de Gato, Artemesiae/ Coptis (Zhang).......If you are really sick I antibiotics are important but they are not the whole treatment. I mix Cowden and Zhang with my herbs and treat with supplements for nerves ie methyl B12, methyl folate, curcumin for inflammation, fish oil for inflammation and blood stagnation herbs (Zhang).

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/9/2009 3:01 PM (GMT -7)   
Do youguys believe MS is just undiagnosed Lyme? And other autoimmune diseases? Weird strains of Lyme?
http://www.myspace.com/399827188


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 6/9/2009 3:10 PM (GMT -7)   
There are many reasons for nerve sheaths to become demyelinated- but it takes the "perfect storm" i.e. genetic tendency for the nerve to do this, toxic or infectious disease (Lyme , virus,...) or autoimmune reaction.

But if you have Lyme and MS I do think if treated early and aggressively you you can improve. But once you have it you are always predisposed to this (demyeilination)- after you treat Lyme you must monitor and treat heavy metals and maintain high levels of B12 (monitor methylmalonic acid in the urine to ensure B12 is working inside your cells), and B vitamins.

veromia333
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Date Joined Mar 2009
Total Posts : 674
   Posted 6/9/2009 3:25 PM (GMT -7)   
I dont think your understanding that MS is Lyme. In alot of most cases. And Lymekiller what you said is not true.,. I would like you to research things before you tell people that something is not what they think it is. Have you seen Under our skin Lymekiller? I want you to see it very much. You need to understand that everyone has different symptoms. and that MS and other diseases with unknown origin are partly caused by undiagnosed Lyme.
Lymekiller I really have a need for you to see this movie if you want a copy email me. -V
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


veromia333
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Date Joined Mar 2009
Total Posts : 674
   Posted 6/9/2009 3:45 PM (GMT -7)   
i dont want to make you mad at me jen. I just dont want you to not get treatment because you think it MS
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/9/2009 4:03 PM (GMT -7)   
I need to get a copy of Under Our Skin...how do I go about doing that? Where did you get yours V?
http://www.myspace.com/399827188


3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 6/9/2009 4:10 PM (GMT -7)   
I just ordered a copy from the web site...http://www.underourskin.com/index.html

I can't wait to get it

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/9/2009 4:16 PM (GMT -7)   
same place as 3WR
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 6/9/2009 5:05 PM (GMT -7)   
I definitly believe I have Lyme. I don't know what to belive about MS. I know antibiotics have helped and I know the MS drugs did not. But it is so hard when you live in a place that thinks your crazy because nuero lyme does not exsist.
 
I am so excited to see DR. K in Conneticut he is a Nuero and I really think he understands my Nuero problems. He got me better once I trust he can do it again. I just can't afford to travel to see Drs, this is getting silly.
 
PCPC. I did not do any herbs or anything I tried to pertend I was all better and I was done. I will not make that mistake again.
 
Jen I would love to know your history and why you think you have MS. Do you test positive for Lyme at all?
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


ticker
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Date Joined Feb 2003
Total Posts : 9208
   Posted 6/9/2009 6:06 PM (GMT -7)   

Hi Jendays.  I am glad your appointment went well and that you have a plan of action.  Is your doctor going to address co-infections?

Getting a PICC line seems overwhelming, but it really is not.  The line can be placed in a doctor's office or outpatient clinic.  You will feel a stick, when they put it in but it should not be bad.  They will thread the line up and then X-ray it to make sure it is in the right place.  Usually a nurse will show you how to infuse your meds and will supervise you until you are comfortable doing it on your own.  The most important thing is to be sure to keep the line clean and dry at all times.  An infection can be trouble.

It is good to get a cover so you can shower without getting the site wet.  One place you can get one is Brown Medical https://www.brownmed.com/Products/StoreProductDetail29.cfm?StoreProductId=99  You can also check at local pharmacies and hospital supply stores.

It can be very helpful to keep track of your symptoms during treatment.  One easy way to do this is to list the main symptoms you are having each day with 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.

Good luck with your new treatment.  Keep us posted on how you are doing.


scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 6/9/2009 6:20 PM (GMT -7)   
Hey Jen, I agree with what Veromia said. You should not think twice about getting the PICC.

Now take a deep breath and trust me when I say that it will be no where near as bad as you think it will be - not even close. I was in the same place a few months back and for the first time in my life experienced anxiety all because of the picc issue. I really didn't think I would get through it no matter how many people told me I would be fine. For me it was more about having the picc in me and not so much about having it inserted. It is not a difficult procedure, is not considered surgery and does not hurt much, if at all. If you have it done at a hospital more than likely they will use an ultrasound to guide it to the correct spot but it can also be done in a doctor's office and then just x-rayed afterwards. I took a valium before the appointment because I was no nervous and to be honest it hurt less than some of the times I've had blood drawn. Really!

I think it's great that your llmd wants to treat you aggressively to begin with. Try to count this as a blessing. The picc and iv's do not come close to what you are dealing with now. I know it's hard to not worry about it but once you have it done you will realize that there really was nothing to worry about.

I feel for you and wish I could do something to calm your fears. I do know the sooner you get it done the better off you will be. I've heard of so many stories where IV Rocephin ended up being the miracle med that was needed. I hope this is true for you.

You're going to do fine and are now finally headed down the road of recovery.

Jendays247
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Date Joined Jul 2006
Total Posts : 652
   Posted 6/9/2009 7:05 PM (GMT -7)   
Thanks everyone. I appreciate all of your input.

Really Lyme~

My first symptoms were anxiety, dizziness, and then came sensory issues (vibrations randomly, etc.) I then had an attack of vertigo while I was driving and insisted my doctor do an MRI because I was afraid I had MS. I have the medical records and she actually listed that I wanted the MRI for this reason. Sure enough, it came back stated I had two lesions on my brain - 14mm for one and 1cm for the other, both in the white matter, perpendicular to the lateral ventricles (common MS place). I saw neuro after neuro, all claiming I did not have MS. I had another MRI a year later which did not change but suggested that the lesions could be from a demyelinating disease. The third MRI I had which also simply stated "continued abnormal signal" said that the lesions could be from "prior infection or illness". This MRI was done at Beaumont on one of the strongest MRI machines, so I take this one to be the best and most accurate report...but still I fear MS because of the lesion sizes.

I also do not have joint pain and never did, which points me away from Lyme...there are a few other things but I'm overheated right now and anxious so I can't really think straight.
http://www.myspace.com/399827188


scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 6/9/2009 7:26 PM (GMT -7)   
Jen, Not everyone has joint pain. I didn't until many years later and it's still not nearly as bad as the other symptoms. Did your doctor ever send you for "evoked testing"? This is the test they used to rule out MS with me. Try not to worry and just see if the Rocephin works. In the meantime you can ask your doctor about the evoked testing.

If I remember correctly you are trying to stop or cut down on taking valium. If I have this wrong, I apologize. If so, I give you a lot of credit for doing this but maybe the timing is not great. If you are experiencing a lot of anxiety over the picc try to give yourself a break and do what you need to get through until you get it inserted and get started on the IV's. I'm sure many people will think I am so wrong in advising this but I remember all too clearly how much anxiety I had over the picc issue and don't think anyone should have to go through that if it can be helped.

I know how overwhelming this all is and I wish I could give you a hug. Please trust me, you will be fine once the procedure is over.

There's no need to repsond to my post just know that I'm sending you lots of positive, healing wishes.

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/9/2009 7:32 PM (GMT -7)   
Scorpio~

I had visual evoked potentials, and at the time of the testing (it was in 2004, when my symptoms FIRST started) - my results were just on the border of normal and abnormal...any more either way and they would have been considered abnormal. I refused to do the other evoked potentials because it was just costing too much and I felt like I was constantly being tested for this or that with inconclusive results.
And yes, you are right about the valium. I had to take 3/4 of a pill today before my appt or I never would have made it through. It helps greatly with my balance and brain fog.

LymeKiller~

Yes I have had vision changes...the vision in my right eye has gotten worse (it's okay with my glasses still - I haven't had to change my prescription and I just need them for far away). Also I have tons of floaters sometimes but I only usually notice them when I'm outside and looking at the sky or when I'm staring at something like a book page or a wall...I know you're having tons of brain fog issues and you're not alone. It seems constant for me now. I talk and two seconds later it feels like an eternity has passed and I wonder if I just said what I think I just said. Know what I mean? It sucks. I feel like I'm never 'here' and I hate it. I feel like I could deal with everything else much better if I had a clear mind.
http://www.myspace.com/399827188


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 6/9/2009 7:36 PM (GMT -7)   
Jendays and Really Lyme,
 
Wouldn't you think that if your symptoms responded to the abx that would be a clear indication that you have Lyme, and not MS?
 
And Lymekiller, you said, 'i think they could test 100 of the healthiest people and they with have lyme specific antibody bands in their blood too... i think the western blot and all of the tests are bs.'
 
Please tell me why you say this -- I have been searching for any possible reasons for a  false positive on  lyme species specific bands and I cannot find any.   How or why would a body  produce antibodies specific to a certain strain of Lyme if they did not have Lyme, or at least have been exposed to it?


Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/9/2009 8:02 PM (GMT -7)   
Multiple sclerosis (MS) is a potentially debilitating disease in which your body's immune system eats away at the protective sheath that covers your nerves. This interferes with the communication between your brain and the rest of your body. Ultimately, this may result in deterioration of the nerves themselves, a process that's not reversible.
MS is an “autoimmune” disease, in which, for unknown reasons, the body’s immune system begins to attack normal body tissue. In the case of MS, the body attacks the cells that make myelin.
It is simple that Lyme can cause the body to attack your myelin, just as it causes our body to attack our joints. You have a brain spirochete.

This is my opinion. You had a pos western blot.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.

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