Here we go again

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1430
   Posted 3/22/2010 11:18 AM (GMT -6)   
Hello Everyone,
 
Well, it's been a long time since I have been on here.  Unfortunately, I have relapsed after nearly three years.  I have an appt with Dr C in Tampa at the end of next week.  My daughters are all doing well.  I am so reluctant to have another PICC line and wondering if there is anything new out there that has proved to be more successful.  My final treatment that seemed to do the best was Vanco, Flagyl and Zith.
I have been in denial about this for a few months.  Over this time I have had more pain, numbness, etc.  Over the weekend I spent the night in the ER with severe deep pain in all of my body.  Thank goodness for morphine!  I see my family dr today to get a better pain mgmt program and MS Contin seems to do the trick when the percocet doesn't. 
On top of all of this, I herniated a disc (L5/S1) a few weeks ago so that may have stirred things up.
 
I missed all of you guys....sad to have to catch up this way :(
 
UGH!!!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 3/22/2010 11:27 AM (GMT -6)   
Oh wow hun. I am so sorry that you relapsed. 1bitten2xshy told me about you right before I saw Dr. C in Tampa. He is a really great doctor and I know he will get you better again. Were you on any supplements for the three years that you were better? I believe that supplements help keep the immune system working right so that when these bugs want to come back out, our immune system can handle them.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1430
   Posted 3/22/2010 12:40 PM (GMT -6)   
Hi Cajun Girl!

I'll try to recap my situation as briefly as possible. I was on about 30 supplements. I was infected as a teenager and did not know it until I had steroid injections in my back and became completely ill. This is when I suspected LD. I found healing well and Igenex in 2007 and tested positive for LD, Erlichia, and Dr C highly suspected Bart. I have three teenage daughter and passed the Lyme to them while pregnant. All four of us were on PICC lines at one time. My oldest and youngest did 6 weeks of Rocephin, Flagyl, and Zith (if I remember correctly) with no probs. My middle daughter had been infected twice and had a l lot of problems. She still has some joint pain but is good for the most part. We had a lot of issues with her being allergic to meds. She also has MVP either from the LD or Babesia.
My treatment started with Doxy, then when I found Dr C he put me on IV Rocephin, Flagyl & Zith. I got to the point very quickly where I could not even walk more than a few feet. The treatment was working but, In Dec of 2008 I was one of the unlucky individuals to get the tainted heparin which caused a severe blood infection called Serratia Marcescens. They had to completely stop my LD treatment and get the blood infection cleared to save my life. It also caused problems with my heart. The Lyme came back with a vengeance in just three short weeks and when I restarted treatment I had become allergic to Rocephin. I had to take another break until they finally got me on the Vanco. I finished in July 2008. My immune system got better, my adrenal glands started functioning again, and my heart issues resolved. I have been in pretty good shape other than aches and pains but my pain mgmt routine had that under control.

I am considering herbs and there is a health store with a Rife Machine right here in Destin. I open to all possibilities but I am definitely going to go see Dr C. My experience in the past is that this gets real bad real quick. A few weeks ago I was cleaning carpet. The weekend before last I was cleaning the garage. Last weekend I could barely move and when I did I wanted to cry.

I fully expect that another brief round of treatment and supplements, etc. will get me right back on track. I think I just need a "tune up"....LOL
Infected in 1988.  DX w/Lyme, HGE, Bartonella 2007.   Successfully treated 2007-2008 w/Vanco, Flagyl, Zith....etc, herniated L5/S1
Relapse 3/2010-Currently on Percocet, Soma, Clonazepam, MSContin for severe flares.  Awaiting appt w/Dr C in Tampa for next round


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 3/22/2010 2:13 PM (GMT -6)   
HI PaininFl,
So sorry to hear of your relapse. It seems as though all Lymies are so susceptible to relapses. I unfortunately have no suggestions, but just wanted to say how sorry I was.

Trav
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 3/22/2010 2:34 PM (GMT -6)   
PainiInFL, so sorry to see you have to come back to the forum due to being sick again. What have you done, or doing, for detox, anything?

Gary

PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1430
   Posted 3/22/2010 5:16 PM (GMT -6)   
Traveler!!!! I missed you! Thank you for your kind words. I am sorry too. I was doing so good for so long...really good. I think this is just a "hiccup" and fully expect the wonderful Dr C will get me back to 99.9% in no time flat. I got Doxy from my PCP today to get me through til the appt.

Gary...I have been doing nothing whatsoever and have had ZERO interest in even talking about LD...gosh that sounds terrible but after going through what my family and I have been through and coming out unscathed, I hope you can understand!
I am open for any and all suggestions from anyone! My feeling is that I am probably going to have to aggressively attack...Vanco & Flagyl and I will be back to my happy go lucky self again...along with herbs, etc. I would love to try a rife machine but I dont want to gamble so heavily and waste any time when the previous regimen worked awesome. As you know with this disease, time is of essence!
Infected in 1988.  DX w/Lyme, HGE, Bartonella 2007.   Successfully treated 2007-2008 w/Vanco, Flagyl, Zith....etc, herniated L5/S1
Relapse 3/2010-Currently on Percocet, Soma, Clonazepam, MSContin for severe flares.  Awaiting appt w/Dr C in Tampa for next round


PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1430
   Posted 3/22/2010 6:04 PM (GMT -6)   
Cajun Girl,

Do you still see Dr C? He is awesome! He treated my whole family. I made the drive at least every month for a year. What a great Dr!!!
I'm looking forward to seeing him again..wish it wasn't under these circumstances though.
Infected in 1988.  DX w/Lyme, HGE, Bartonella 2007.   Successfully treated 2007-2008 w/Vanco, Flagyl, Zith....etc, herniated L5/S1
Relapse 3/2010-Currently on Percocet, Soma, Clonazepam, MSContin for severe flares.  Awaiting appt w/Dr C in Tampa for next round


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 3/22/2010 7:16 PM (GMT -6)   
Hi PainInFl!!
It definitely sounds as if you have been through the ringer!! I'm so sorry to hear about the whole tainted heparin thing! Are you interested in getting FDA warnings about foods &/or medicines? I can get you the link & post it here if you would like. I follow these all the time - no matter how dis-heartening it all is!

Have you considered detoxing? For me it has been very important - I always forget to do the dry brushing, until after I step into the shower & under the water ( kinda messes with the whole 'dry' part of the brushing!) - so I usually just scrub as good as I can with a loofa sponge.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 3/22/2010 9:02 PM (GMT -6)   
Hi Pain in FL , sorry to hear you condition. It sounds like you got the abx routine down so I will only add other things that have been helping me.
one was heparin for thick blood. lyme is known to cause thick blood.
the other is glutithone IV is great for liver which always takes a slamming between abx and pain meds.
coffee enema of course
and I did 3 DMSO heavy metal IV detox and made huge difference.
so it's more all the other conditions around all the infections. You know? but that made huge
diffference relief wise.
everyone seems to have different abx coctials so I won't suggest any. I did do EDTA IV before all my abx IV treatments to open up all the cells so the abx can get in there.
what else? other things but those were the main ones that seem to be more about damage control. and of course always .........pain meds.
my whole world changed from the blood thinner. I felt like I was having mini strokes. my head was so heavy. the swellling has gone down in my legs. my blood was NOT moving.

good luck...
hep c , lyme
Dad has lyme


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 3/22/2010 9:15 PM (GMT -6)   
Hey pain in florida..

i forgot to mention..the rife machine.. are you buying one? I have also been doing that as part of my protocol and it definitely threw me for a loop every time. but I haven't been on it for almost 2 weeks but when I did something was happeinig because I was getting sick.

don't know if you have to do certian other things like maybe hydrogen peroxide or something to help with the die off or what gets kicked up? but i am assuming it helped.

I won't know anything untill I am done with my 8 week intensive and even then will have to see later on. but the rife they had was about $3000. it had glass tubes that you put luke down your pants waist band. up and down on each side of fron of belly and then change to back on kidneys and then cris cross in front over liver and ?? what ever on left side and they
had these 2 flat metal sheets that you put your feet on. I felt it zooming up my legs especially the right side which is my pain side on my body . it definitely was doing something.
hep c , lyme
Dad has lyme


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 3/23/2010 5:40 PM (GMT -6)   
PainInFl,

Yes, Dr. C. is still my doctor but right now, I am not on any treatment because by liver enzymes are elevated and he is concerned about that. I need that to get straightened out before I take antibiotics again.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 3/25/2010 3:20 AM (GMT -6)   

Hi PainInFL!!

I am sorry you are relapsing but it is great to catch up on your family.  My daughter teenlymer and I were just thinking about your family the other day.  We asked each other if we had heard how you all are!   I am happy the girls are doing well and hope you will be feeling great again soon!

We are still in the battle and unfortunately,  teenlymer is having a "downturn" that is not relenting.  We remain hopeful that someday this will all be just a distant memory.

Take care and best wishes to all,    bablymers mom


PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1430
   Posted 3/25/2010 4:13 AM (GMT -6)   
Hello Babylymers Mom!!!

Funny how you think of someone and sometimes they just pop back up! Sorry you are still having to battle so hard. I thought my situation was a distant memory and I still firmly believe the worst is behind us. I caught this relapse quickly and started on Doxy per Dr C's previous instructions for Doxy then Flagyl for a flare. I have had 5 doses so far and got real sick for three but I can tell it's helping when I'm not feeling bad. I had a real good day yesterday. I may add Flagyl Monday and see Dr C Friday. I'm trying to be real careful because I have to work and have a girl out next week.

I am kinda hopeful I may be able to hit this with orals for a month or two...we'll see what Dr C says. If he says we need to go the Vanco route again I will do it. These bugs may need a "last blast" to show them not to mess with me anymore...LOL! I don't know if this is a flare or a relapse but I'm not taking any chances, and really what is the difference?

Great to talk to you! I will keep you posted.

Anne
Infected in 1988.  DX w/Lyme, HGE, Bartonella 2007.   Successfully treated 2007-2008 w/Vanco, Flagyl, Zith....etc, herniated L5/S1
Relapse 3/2010-Currently on Percocet, Soma, Clonazepam, MSContin for severe flares.  Awaiting appt w/Dr C in Tampa for next round


georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 3/25/2010 4:40 PM (GMT -6)   
smile Hi PainInFL,
  It's been a long time since i've talked to you! I'm sorry that your feeling so bad again. Hopefully Dr. C will get you back on the right track again. Did you ever get completely symptom free or did you have lingering symptoms after you stopped treatment? If so how long were you symptom free? Thanks
GG  
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, October 22, 2017 5:03 PM (GMT -6)
There are a total of 2,885,763 posts in 316,635 threads.
View Active Threads


Who's Online
This forum has 157739 registered members. Please welcome our newest member, fjzraa.
373 Guest(s), 10 Registered Member(s) are currently online.  Details
Kent M., therearemiracles, countess18, Pirouette, purplereading, getting by, Jerry_Delaware, Leno1978, sunny40, irish4me


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer