Here we go again

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!!!

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

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

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.

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...

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.

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