I'm sick and tired of being sick and tired.....

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georgiagirl
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Date Joined Oct 2007
Total Posts : 1172
   Posted 8/11/2010 9:02 AM (GMT -6)   
I've  been sick since may 2007, went to many doctors. got diagnosed in nov. 2007. The first 8 months of treatment included abx. combos and some of Dr. buhners protocol for LD. I also tried levaquin (about killed me) and also cipro for possible bartonella. I had a horrible time trying to tolerate the meds. 
 
I did get relief of a very bad headache that I had for 4 months straight from the treatment but I was still very sick. My doc. at the time got burned out with me and said that she thought I had "post lyme syndrome". I think she just wanted to get rid of me and that did the trick! nono
Soooo I found an ID doc. that was willing to try IV rocephin. The office was 2 1/2 hour away and I had to get someone to take me back and forth. The first picc line kept leaking so I had to go back and forth several times and ended up with a second picc line. It was very stressful. The day before my second line was to be placed my son woke up with 3 EM rashes on his legs. I was devastated...my doctor treated him with about 3 months of amox. and he seems fine but my current LLMD is watching him closely.
Along with the IV rocephin I was on rifampin (by my request for possible bart.) flagyl, and who knows what else I can't even remember.
My arm started hurting towards the end of the 6 month and the picc line had to be pulled because of possible blood clot. I suggested  bicillin shots and only got through  the second one when my husband hit a nerve. It was horrible pain...
The doc. at the time was not a llmd but he was on my insc. and he tried and did the best he knew how. He was not into talking about or treating co-infections so I decided to see a natural med. doctor 5 min. from my house. We tried homeopathic and herbal meds including cowden protocol and some different supplements. It was the best that I had felt but I was still to sick to go back to work. He was very expensive and insc. did not pay for treatment. I could not continue to pay for it. I went for about 5 months. He was such a good doctor and was so posative all the time and tried very hard to get me better. I did not want to stop going.
During all this time I had applied for SSDI and had been turned down and I asked for a reconsideration, it was turned down also. It has been a long road trying to get this. I am now waiting on a hearing, it will take several more months....
 
The problem i'm having now is I have a very good LLMD (9 hours away) that I have been going to since last Nov. that is helping me with the disability but i'm not handling the treatment plan very well at all. The side effects are really bad and I am burned out on all the abx. . I am curriently going to start a new combo of meds for LD and am trying to tolerate babesia treatment...she really thinks I have this because of my reaction to the mepron art. and clynd.. I just don't know what to think anymore or what to do. I really need to be on SSDI and she is the only one that has been willing to help me besides my GP. He is willing to fill out the paperwork but does not treat LD.
I really wish that I could go back to the cowden protocol and natural meds. but I would surely loose my chances at SSDI. I hate that i'm in this position. 
I have also been in 3 car wrecks in the past year (not my fault) that have added a great deal of stress to my situation. I have also been diagnosed with PTSD.
I feel lost as to what to do. I feel like everyday is a rerun.
I will stop here, I know this is a long post.
Thanks for reading.... :-)     
 
     

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/11/2010 9:29 AM (GMT -6)   
Ohhhhh, Georgiagirl!!
I am soooo sorry for how you are feeling right now!!! Hang in there! I get that same feeling about being soooooo sick & tired of being sick & tired!!! My situation is very different from yours, but I can sure sympathize with you.

Keep on fighting to get your SSD!!! Do you have a lawyer that specializes in SSD? That would be a really good idea at this point in your struggle with them.

You have been through quite a bit of "stuff"!! Good thing you have found a good LLMD!

Are you detoxing? That could be a lot of the reason you are having trouble handling your treatment plan.

Hang on!!! Hopefully things will start to get a little easier!!
((((HUGS))))
Remember to be kind to yourself!
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 8/11/2010 12:39 PM (GMT -6)   
Hey Georgiagirl- I am so sorry you are still having a bad time...I have been through all the treatments too. I went for 30 months on abx combos-IV rocephin and the bicillin shots. In all I was on about 14 different combo's of abx.
I have had horrible yeast problems even since stopping the abx in May of 2009 and can't get rid of it.
 
I actually came to the conclusion that I am not sure I ever had Lyme to begin with. I did have some reactions on the abx but not enough for me to say they were "herxes". I was also treated for Babs and Bart which I really don't think I ever had.
 
I am still suffering from chronic fatigue which I have had since day one (nov 2004) and my calf pain and twitching. So I decided to quit my doctors and all treatment. I was terrified to do this because I felt as long as I was in treatment there was a chance I would get well. That never happened and the abx were making me sicker than ever causing me so much nausea, even more fatigue and just plain ugh. I am not sure what is still wrong with me but it definately isn't Lyme.
 
I am wondering if maybe you just take a break for a while and see what happens. I don't feel any worse since quitting abx. I am getting physically stronger and at least feel like eating again.
 
My LLMD did tell me at the time I was in treatment that alot of people have side effects from all the abx and think it is herxing when it really isn't. That is when I decided I was having side effects and not herxes at all.
 
I hope you can get SSDI..I am able to work very part time right now.
 
Believe me I honestly know what you are going through cause I went through it too but I needed to step back and take a break from it all...maybe you are too sick to do that but it might be worth a try. I am thinking of you....
 
 
 
 
 
 

georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 8/11/2010 1:54 PM (GMT -6)   
Hey Traveler!
Yes I do have an attorney. It's such a long process. I hope my doctors will continue to help me get through it.
I am detoxing with the salt baths and sauna..

PattieB, Thanks, did you get the e-mail I sent to you?

Ktp812, I wish I could take a break but my LLMD thinks we should move forward with treatment for LD and babesia. I trust her opinion, it's just so hard to keep doing this day after day when you can't see the light.....and this PTSD is making this much harder to deal with.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 8/11/2010 2:02 PM (GMT -6)   
I think I passed "sick & tired of being sick & tired" a long time ago...it's been such a long road (symptoms began in 1978...and have just progressed since).

I hope your SSDI comes through; I don't qualify for it because I haven't worked enough...wish I did qualify.

Take care,
-Razzle
Chronic Lyme & Bartonella, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle & other liver support herbs, Magnesium, Progessence+ (wild yam + essential oils), Moducare, homeopathy.

georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 8/11/2010 2:26 PM (GMT -6)   
Hey Razzle,
I know that you and many others here have been sick alot longer than I have and I feel so bad for you all.
How does one cope after so long?
It breaks my heart to read all these posts from people suffering.....

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 8/11/2010 6:44 PM (GMT -6)   
Cope? Well....the only thing I can hang on to is (because of my Christian beliefs) the promise that I'll get a new body when I get to heaven. Other than that, I use a lot of distraction - watching tv, reading, playing computer games, solving Sudoku/other puzzles, etc. - to deal with the pain and other stuff. It isn't easy, but I've been sick for so long, I don't know what it is like to be well. My best years were when I was in college (high elevation, good exercise, low stress) and I miss that time very, very much...unfortunately, my brain has diminished since then and I don't have the ability to learn/remember stuff like I could then. I used to escape from my physical body into the mental realm through doing homework or reading - now I can only do the reading part, and only as a distraction and not so much as an escape...just don't have the mental focus anymore.

I'm rambling...sorry. Tired from running errends and the return of summer weather...
-Razzle
Chronic Lyme & Bartonella, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle & other liver support herbs, Magnesium, Progessence+ (wild yam + essential oils), Moducare, homeopathy.

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/11/2010 8:53 PM (GMT -6)   
Georgia:
So sorry you are going through all this! I just started abx yesterday. I was diagnosed in 2009, 6 mo after I got bit (that is what I believe, but it may be more than 6 mo) and took only 3 wks of abx--doc # 1 said it is enough. Then doc #3 gave me nothing for a year, even though I had + tests (he misread them). Now doc #4 is giving me abx until I can get an appointment with an LLMD--it seems all of them went on vacation for the next few weeks.

I am scared to death! I have 3 kids (6, 5, and 9 mo) and I have to be well enough to care for them!
I don't understand what went wrong! You didn't have it that long--why are you not getting better? Do you think maybe the abx are putting so many toxins in your body, preventing you to get better?

Post Edited (Simela) : 8/12/2010 8:59:20 AM (GMT-6)


georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 8/12/2010 8:30 AM (GMT -6)   
Razzle,
One day we will have new bodies and a new home in Heaven with our loving God. Knowing that keeps me going everyday. I can only imagine what it will be like...

Simela, by the time I got diagnosed it had entered my CNS. My doctor thinks that I have babesia which was never treated by other doctors, so hopefully I will be seeing some good results soon...just trying to tolerate the meds and herxes.
I have 2 adorable little boy 4 & 11. They keep me going everyday.

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/12/2010 9:00 AM (GMT -6)   
Georgia:
What were your symptoms and how severe were they? When does one know if it entered their CNS?

Thanks!

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 8/12/2010 9:05 AM (GMT -6)   
Hi there,
I know exactly what you are feeling. It will get better, keep fighting.
Although I never tested positive for Babesia, I reacted to the medication like I was. As soon as that was treated, I started to make remarkable progress with the beating back Lyme. Perhaps the same would be true for you.

It helped me to remember that no matter how bad a day I was having, there was still something I could do that brought me pleasure. Even if it was just watching a stupid TV show with my husband!

Wishing you well

georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 8/12/2010 12:40 PM (GMT -6)   
Simela,
My symptoms are brain fog, head pressure, stiff neck, arthritis in my joints, twitching, insomnia, flue-like illness, major fatigue, neuropothy, raynaud's, anxiety, and alot of pain.....these are the main ones...

georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 8/12/2010 1:11 PM (GMT -6)   
achievinggrace,
What did you take for babesia and what was your reaction to it?

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/12/2010 1:23 PM (GMT -6)   
Not sure if I have Neuropothy, but all of the others, I am experiencing also... In addition, I am numb quite a lot. I didn't know what Raynaud's is, I just looked it up and I also experience that. I also forget simple things. FOr example, I called dr's office today and I forgot my phone # and I forgot how to spell my first name. It is really annoying when this happens! Everyone must think I am so stupid!

I just can't believe that it affects the CNS so soon! I thought it takes years for this to happen! The pain, sometimes is very bad, but most of the time I can endure it, I have high tollerance for it. What bothers me most is the brain fog. When I forget how to do things, it is not even as upsetting to me, it is that state of fogginess that gets to me the most! I was trying to make some soup today and I started to pour watter in the pan, instead of pot. I just laughed! One day, I put OJ in my coffee instead of milk and it took me 5 minutes to find a cup, yesterday! I forgot is in the Kitchen cabinets. All this, doesn't bother me as much as the innability to think, concentrate, etc. My brain has been fog free for a few days, even though I goof off once in a while.

georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 8/13/2010 3:45 PM (GMT -6)   
I know what you mean, brain fog is not fun.  nono
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