Feels like it's back again

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Hopegirl
Veteran Member


Date Joined May 2008
Total Posts : 704
   Posted 3/15/2010 7:25 AM (GMT -6)   
 
 
Okay so I feel like most of the Lyme symptoms has slowly but surely made their way back. I was diagnosed with Lyme late last spring, went to see a LLD, had a pic line put in and started Rocephrine for approx 8 wks, then I got a blood clot and had to have the line removed. I was overwelmed and upset and never went back to the LLD again. I felt like the Lyme was "cured" so I figured I was ok, well I now have the pain in my knee's back, the week thights, and constant pain (which I have fibro so I thought I was just flaring all the time) and the pins and needles in my legs and side when I lay down. My memory is getting foggy again too. So I'm going to my primary to day to have some blood work done to confirm my suspicion. Not happy at all about it. I really thought it was all behind me. I will not have another pic line put in, I will have to have oral antibiotics. I still have pain and soreness in my arm where the line was before.
 
 
Hopegirl...aka Monica
 
Current yucky stuff: Lyme, Fibromyalgia, Anxiety, IBS, Reflux, Insomnia, Sleep Apnea, PCOS, Migranes... to name the major players....
Current Meds to help yucky stuff: Tramadol, Percocet, Adavan, Prestique, Neurontin, Frova
 
 
Taking it one day at a time.... 


Hopegirl
Veteran Member


Date Joined May 2008
Total Posts : 704
   Posted 3/15/2010 1:40 PM (GMT -6)   
Have I been away for too long? No one loves me anymore over here???
 
 
Hopegirl...aka Monica
 
Current yucky stuff: Lyme, Fibromyalgia, Anxiety, IBS, Reflux, Insomnia, Sleep Apnea, PCOS, Migranes... to name the major players....
Current Meds to help yucky stuff: Tramadol, Percocet, Adavan, Prestique, Neurontin, Frova
 
 
Taking it one day at a time.... 


betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 3/15/2010 6:21 PM (GMT -6)   
Hopegirl,

I'm experiencing the same as you. I got sick with lyme in June of last year, but didn't get diagnosed and treated until late July. I started with doxy and had serious stomach problems. I did 30 days of IV-Rocephin and wanted to continue the treatment but my doctor was not comfortable extending because of the potential for complications. I was taking Nuerontin for the severe numbness that I experience but found that it was becoming less effective so I weaned myself off it. I had a lumbar puncture a few months back which revealed possible MS. My health has been getting worse over the past few months and now I'm not sure what's wrong with me anymore.

I am still working full time in a stressful job and find it nearly impossible because of persistant brain fog. My brain now seems to have only two speeds, slow and stop. Hoping to find some relief soon.

My nuero suggested that I try IV-Immunoglobulin treatment for 5-days. Apparently it costs about 10K
Have you had a spinal tap yet?

Hope that you things improve for you soon.

Gary
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Gabapentin, Vitamins B,C & D
 
 


Hopegirl
Veteran Member


Date Joined May 2008
Total Posts : 704
   Posted 3/15/2010 7:28 PM (GMT -6)   
Hi Gary,

Boy, it sounds like you are in the same boat as I am. I am way too scared to get a spinal tap. When I was on the IV rocephin last year, I would get these awful migraines that would land me in the ER, one time the ER doctor tried saying that I should let him give me a spinal, I was so drugged up from the meds to get rid of the migraine, but when I heard him say that ...I was like no way are you giving me one.
I have heard of someone talking about the IV Immunoglobulin but don't know much about it. I went to the doctor today she did a blood test, Lyme Tither and started me on Cefuroxime Axetil?
So what is your doctors next step in finding out if it is really MS or something else???
Work is really hard, I keep pushing and pushing to keep working. I fear that I may have to come out soon on short term, but I'm afraid if I do that then they will see that they don't need me and I'll be out of a job, ya know?
 
 
Hopegirl...aka Monica
 
Current yucky stuff: Lyme, Fibromyalgia, Anxiety, IBS, Reflux, Insomnia, Sleep Apnea, PCOS, Migranes... to name the major players....
Current Meds to help yucky stuff: Tramadol, Percocet, Adavan, Prestique, Neurontin, Frova
 
 
Taking it one day at a time.... 


betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 3/16/2010 5:24 PM (GMT -6)   
Hi Monica,

I'm trying to get in to see a lyme/ms neuro doctor to figure out what treatment to pursue. The good news is that the mri's of my spine and brain show no lesions so no diagnosis of ms. Not sure how to interpret the results of my spinal tap. My nuero says he thinks i'm somewhere between chronic lyme and ms. Hard to believe that I was perfectly healthy last year at this time.

Are the new meds that you're taking to treat lyme or other co-infections?

I hope that get start feeling better soon.

Gary
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Gabapentin, Vitamins B,C & D
 
 


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 3/16/2010 11:51 PM (GMT -6)   
right on junk yard.. no way believing the MS.

at this point I would find a doctor that has lyme if I was either of you other guys.

lso what is ths $10,000 imunogloblin therapy??? how many treatments ist that..is it IV .

I never heard of it.

have you done heavy metal treatment IV or even blood thinner?

How long have yoou been sick and infected. there is a good chance you will be on pain meds rest of your life so finding the best one that is least damaging to liver and kidney is key. at least for while you are on treatment.

if either of you want to talk to me aobut what i have been doing past 7 weeks email me.

I really feel like they just throw out a new disease name because they haven't throoughly delt with the lyme.

hopegirl I had all same symptoms as you and i also have HEP C and crashed out adrenals and on prdnisone.

And a spinal tap is pretty serious stuff. please feel free to email me so i can share with you a couple of basic things I found out during my treatment. And i was ppretty far gone and spinal tap material but no way would I let anyone satrt with that stuff. I won't even get a liver biopsy. It's just too much.


bucci
hep c , lyme
Dad has lyme


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 3/17/2010 5:30 AM (GMT -6)   
Hi hopegirl,
 
It sounds to me though I'm not a doctor just someone that has lived the lyme life that you are really dealing with toxins and toxins will cause lyme symptoms.    Logically, when lyme bacteria is killed off, an overload of toxins are left over causing more problems than anything else. 
 
Are you on any detox regime?  If not, read the Sticky Thread on top called "New to Lyme?  Start Here!" as that has detoxing instructions.
 
I'm going to include an article about lyme toxins and you may find it helpful.
 
 
I hope this helps and that you feel better,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 3/17/2010 2:04 PM (GMT -6)   
HI hopegirl,
IMHO, it sounds like maybe because of the issues you have with the IV, maybe the tick-borne infection wasn't dealt the death blow you had hoped for?? From what I understand, if not treated right, the TBI can go chronic & deeper within our tissues. Maybe this is what happened?

I had to detox, starting off very slowly (once a week, because it caused migraines for me), and continue for several weeks before seeing any kind of relief. I was just determined to do the wait & see approach.
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 3/17/2010 4:04 PM (GMT -6)   
JunkYardWilly said...
i tried detoxing with no help. lots of distilled water, epson salt baths with hydrogen peroxide, no help. maybe others will have more luck with them


JYW, what kind of protocol have you been on since you were dx? Are you making any progress whatsoever?

Gary

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 3/17/2010 10:18 PM (GMT -6)   
JYW, I'm really sorry that you are doing so poorly. Feeling terrible all the time sucks big time. I was there long enough to know and it's no fun! Yes, Dr. C treated both my wife and me in the beginning. He did help my wife to get well on abx but wasn't able to help me. That was not really his fault as I simply could not handle abx. Abx tore up my stomach and did a real number on me.

My wife took abx for about 18 months, if I remember right, and got better from Dr C's treatment. True, he is not very aggressive in his treatment protocol. His philosophy is, if you treat to hard and have hard herxes you will give up on the treatments and end up getting worse later on. His protocol is controversial in a lot of lyme circles, but many people think he's the best thing since sliced bread. He is smart as you say and knows his business. I do know that if you ask him to ramp it up and go more aggressive with you he will do it, but he'll do it reluctantly and try to persuade you not to go that route. Others on the other lyme forum have said he will treat harder if you insist on it.

My wife eventually relapsed and later got her treatment from Dr. W in Texas. The reason for this is because Dr. C moved further east from us and it would have been a 9 hour drive to get there. We found another LLMD in north Texas who treats lyme disease. He and his wife both had the disease and that's what got him interested in treating lyme. He's still relatively new in the lyme business and can handle simple lyme cases, but, in my opinion, he doesn't have enough experience in treating people with late stage lyme such as myself. He tried to treat me but it failed. Again, I don't blame him, as I'm one of those kinds of people who simply don't respond well to abx.

As you already know from reading my Hansa Center thread, I finally got better going to the Hansa Center on the two week treatment protocol. I'm still taking herbal/botanical remedies and homeopathic remedies. I'm taking some supplements as well. I've gone back to see Dr. Jernigan once for a follow-up and some additional treatments and therapies. I really feel that had I not found out about this protocol I would not be sitting here writing this post to you right now.

It seems that you talked about this before, but I forgot, so please refresh my memory on this. Did you say you went to see Dr Jernigan before? Was he not able to help you? Have you considered trying natural remedies to see if maybe it will work for you like it did me? I was probably one of the most skeptical patients Dr. Jernigan's ever had, I'm sure. I questioned everything he did to me and put him on notice that I had a lot of doubt about his testing methods and treatments. I really didn't want to go there but Deejavu made a convincing case to me as to how it helped her and she encouraged me to give it a try.

My wife, of course, "nagged" me about it and told me I had nothing to lose because at the rate I was going I was going to die if I didn't do something soon. Back in December I was planning my funeral. Today I am feeling 50% better on most days and on many days as good as 75% better. In time I'm sure I will get even better, but I might never get to the 100% mark because of the fact that this disease did a lot of damage to my body before I ever got diagnosed. I've lost a lot of bone mass and I still have arthritis pain when I get up in the mornings. My abdominal pain is still bothersome but much less than before.

The best part of the treatment for me is that I finally have energy, my mind is clear and my emotions are stable. I have hope that I will get better and have a desire to live now which is something I had started to lose back in December. I don't take naps everyday like I used to and can finally do things I haven't been able to do in a long time. Like I said, I'm not 100%, but I have a lot of days when I really feel good and that's something I haven't had in many years. It's so nice to be able to feel good again.

Anyway, I don't mean to sound like a broken record, but if you haven't thought about trying natural treatments, I encourage you to give it some consideration. Even if you just get Dr. Jernigan's book, "Beating Lyme Disease", and follow his protocol, I encourage you to give it a try. It worked for Deejavu, it's working for me (and a lot of other people), it's very possible it could work for you too.

I'm really sorry for how you are feeling JYW. My heart really goes out to you and I wish there was something I could do to help you. It's a horrible feeling what you're going though--I know. I understand that you're worried, I was worried too, not so much for me, but for my family. I do hope you have a good support system through your family and friends. That's what got me through it, having family and friends who were there to support me. Also having people like Deejavu and people like you on this forum who understand what we're going though, it all helped me to get through it. You have friends here who care about you and who are rooting for you.

I'm praying for you and hoping things get better for you soon. If there's anything I can do for you, don't hesitate to send me an email and I will do whatever I can.

Gary
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