posted
If anyone can please give me any info on anything I would really appreciate it, I feel like I'm on my death bed, I can't make it much longer, here's my story:
I have a confirmed diagnosis of lymes since this past June, rash and everything, my family doctor could care less, I was put on two months of doxy(which I begged for), it did nothing, I have been seeing a llmd in King of Prussia/Harleysville dr. g for 3 months now and starting to question.
My protocol is : ceftin 500mg, biaxcin 500mg, and amanadine all twice a day for 3 weeks, then flagyl and amandine for 1 wk. also every day, arteminisin, cumanda, samento, pro boost, tons of vitamins. The problem is I'm only getting worse, some people are telling me it's herxing, some say no you should be at least getting a little better???? I have now progressed to sever neurological symptoms and just recently in the hospital for sever pcv's and the pain is unbearable. I am now walking around with my heart feeling like it's beating out of my chest along with all the other symptoms.
I have suffered terrible pain for the last 8 years, I am 30 yrs old diagnosed with fibromyalgia(possibly had the lymes and not the fibromyalgia, that's in question right now) I have had no quality of life my whole 20's.
So I saw my llmd 3wks ago, he said Im to immediately go on iv's , rocephine and colloidal silver, the problem is I have been trying to get my PICC line in for 3 wks now, the nurse has been on the phone with my insurance company, home health agencies and hospital, my insurance company has actually approved the iv's for at least the 6 months in full which is great but now the hospital in my area won't put the PICC line in because the doctor is not affiliated w/them.
So that's where I'm at now. I want to pull my hair out and scream, in the meantime, I have missed wks of work, I'm back at work walking around with pvc's and severe pain, I feel like I'm on another planet, I have short term memory loss, I can't even understand what people are saying to me.
I'm trying to tell all this to my doctor, but the nurse is not addressing this, she's spending hours on the phone trying to get this picc line in.
I just don't know what to do any more. I feel my body getting worse, this lyme is going to kill me soon, I know my body.
What do I do? Do I switch docs? From what I can tell, my doc is really treated this progressively. Is it normal to be in this kind of treatment and just keep getting worse? I can't fight the pain anymore. My doctor is not addresssing my pvc's, family doc says it's the side affects from my meds but I've been on them 3 months and just started the pvc's about 2 wks ago?
I don't know what to do anymore, I don't have any energy in my anymore, I live alone, I'm fighting this by myself, no one understands, family and friends try to help but they have no clue what I'm going through. Every night I'm afraid to go to bed because the night I first started w/the pvc's I woke from a dead sleep, my resting pulse was over 200 my leg went numb and i collapsed.
Please if any one can give me any input on anything.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
Okay, you did respond to that. Did you get the chance to buy some mag?
Would it be possible for you to take a break from antibiotics? Your liver needs time to catch up with its work of detoxifying the poisons left behind by dead Lyme bacteria, which cause the Herxheimer symptoms.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
posted
I'm sorry you are having such a hard time, Shannon. It must be so hard to be fighting this alone.
I just wanted to tell you about our experience with my daughter's Lyme disease. She was treated very aggressively, including IV and she just kept getting worse and worse. We were very worried that she would die. Our LLMD sent us to a LLND who determined that she was not detoxing enough, so just killing the bugs was making her sicker, since her body couldn't get rid of the toxins.
In her case, we had to put tons of detox on board, for drainage, binding, etc. and then she started to improve. She was very sick in 2008 and 2009, recovering in 2010 and has been symptom free for 1 1/2 years now.
I think it is important to have the HLA genetic testing done to see if you are in the 25% of the population that does not detox well.
There is a lot of good detox info in the book "Insights into Lyme Disease Treatment" and there are also a couple of youtube videos on "Lyme and Detoxification" and "toxin binders".
In terms of the PICC line, you might try getting a written order from your LLMD and taking it to a local surgeon.
Hang in there, Shannon. I hope things start to improve for you soon.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I'm not an expert but you may want to consider getting some pain meds or going to a pain management specialist.
Detoxing is really important but it takes time & it's not easy. At least, if you get some of the pain issue addressed - you may be able to think better. Chronic pain can make you anxious & it's really hard to do anything if you are in constant pain.
Just try to keep plugging away at things bit by bit. It takes time. You may want to try to prioritize things - make a list. It helps to do that so you don't get overwhelmed.
I didn't do the IV abx - so, I can't offer much there.
Good luck!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
posted
Can you get in touch with any support groups near you? I think it would be good for you to talk with other Lyme patients and not be alone with all this. You can find groups listed at the left with Support Groups.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
thanks everyone, yes carol, i started the magnesium, I think my pvc's are improving. about detoxing, I started doing the epsom salt baths, I know I have to try more things, I've just been spending all my energy in trying to get this picc line in and trying to work full time, I literally am dragging myself to work, this just all doesn't seem real to me. I don't even know how I'm working right now, every day a new body part goes numb. I just lost a 13 year relationship over this.
It just doesn't seem worth all the energy if I'm not going to get better, but the more stories I hear I guess maybe it may be all the neurotoxins in my body and need to detox more.
I am going to get in contact with a support group.I'm just at my breaking point, I'm not a strong person and now I'm realizing I may have had this for 8 or 9 years, it just all hit me today.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
| IP: Logged |
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Is there another hospital?// I know iffy Idea but many Id docs have in house people to do this..
.Get ahold of the HEAD of that hospital''
If you're approved ,there's no reason not to get what you need,,, Tell them there's much more that can happen to you if you don't get this done correctly and they would be having a whole lot more than pic line help..
Listen to me <I have no Idea how many ways to get this done.
I'll shut up and pray for God's favor on this matter,
while others that have gone through this can give you IDEA's.... Big city ??/do they have places to go to for certain procedures ...back shots, mri's etc??/'
nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[kiss]](graemlins/kissing.gif)
![[Mad]](mad.gif)
![[bow]](graemlins/bow.gif)
nonna
Printer-friendly view of this topic