Does it ever get Better?

I am seriously, severely depressed and I'm getting really depressed about it.   I've only been on CAPi for a few months and already I'm tired of it ready to give up. When do I start feeling better? Where do CFSi/Fibro  symptoms end and just plain old depression kick in? I'm getting some of the best care possible and on tons of meds and support. Yet I can't make it through the day without falling apart.

My life circumstances are just not conducive to having a severe illness. I'm 56 and my husband and I have been raising two of our granddaughters for the past 10 years. They are both high maintenance and special needs. One is in a special school this year, but we can't afford to put both in school. Public school here is not an option. So I'll need to homeschool. They, like me, are sick - but don't look like it to most folks. On top of that, their mother is talking about moving back in with us with a third grandchild. Telling her no is not an option. She really can't take care of herself.

Hubby is borderline asperger - if there is such a thing. So sometimes he understands and other times he acts like one of the kids. And he's probably dealing with his own depression but won't admit it.
 
We just moved this summer - big stress. We're in TN - HOT - big, big stress. And on and on.

If I could just say I had cancer or if I were in a wheelchair, maybe I'd feel better about feeling so bad all the time.

There is no light at the end of my tunnel and the tunnel keeps getting more and more narrow. How do I get out of this funk I'm in?

Linda in TN
Homeschool Nana to Kirstin and Madison
 

Comments

hsnana wrote:"Public school

hsnana wrote:"Public school here is not an option"

Why?

 

hsnana wrote: "their mother is talking about moving back in with us with a third grandchild. Telling her no is not an option."

Why?

 

hsnana wrote: "Hubby is borderline asperger - if there is such a thing."

Every male on my father's side of the family is an Aspie except me.  In my case, the doctor described it as "sub-clinical". 

The bacterial leftovers resulting from the CAPi can make you feel depressed.  That is treated with supplementsi described in the CPNHandbook. For me, the key to climbing out of depression that wasn't related to CPN and the CAP was to change my approach to life.  Instead of letting the depression foreclose options for me, I decided to find ways around them.  If the local public schools are not to your liking, go visit the school and talk to the principal.  If that doesn't work, talk to the school board members.  The schools operate under mandates to accomodate special needs children and most of the people I've dealt with take their committment to the children very seriously (they're certainly not there for the money).  Talk - don't demand - and you may be pleasantly surprised at what happens.  And I'll bet the experience has an amazing effect on how you feel.    

 

 

CAPi for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazolei + INHi completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

I hope it all works out for

I hope it all works out for you. I was on CAPi for almost 3 years and the only reason I went off was becuase I couldnt afford it anymore. I truly think God was looking out for me becuase I though as soo as I went off of them I would die but nothing really happened. I still get symptoms but they are minor. I think the biggest challenge is getting your immunei system to get the bugs in check.I know the cpni is stil in my system but I can function normal now. some suggestions to go along with cap would be Colloidal silver. that really helped me out when the antibioticsi stopped working.  Its a long process to get ride of this but you cant give up. try some antideppresants in the mean time. I use Lexapro myself

Fibro, CFSi,  Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day,  Still cant shake it but improving.

I hope it all works out for

I hope it all works out for you. I was on CAPi for almost 3 years and the only reason I went off was becuase I couldnt afford it anymore. I truly think God was looking out for me becuase I though as soo as I went off of them I would die but nothing really happened. I still get symptoms but they are minor. I think the biggest challenge is getting your immunei system to get the bugs in check.I know the cpni is stil in my system but I can function normal now. some suggestions to go along with cap would be Colloidal silver. that really helped me out when the antibioticsi stopped working.  Its a long process to get ride of this but you cant give up. try some antideppresants in the mean time. I use Lexapro myself

Fibro, CFSi,  Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day,  Still cant shake it but improving.

Linda, being grateful that

Linda, being grateful that you are on this amazing treatment is the first step in seeing hope and light in your life. Others are languishing in their illnesses caused by this ravaging infection but those of us on CAPi are rising out of the ashes. It is a miracle and a wonder that every day I am thankful for.

Family issues are sometime hard but we can find some good in all of it.

All of us are different but I suffered through some very bad pulses for at least 3 years--Cpni was even in my leg bones from the pain I experienced there. Now I get a few chills and aches at the most.

Hang in there. Like the phoenix rising from the ashes, you will pass through this painful period. Stay on target--you have a lot to live for.

Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Linda, this is not a quick

Linda, this is not a quick or easy journey and you are particularly burdened. If you can get a volunteer from your local high school to help out with the teaching, you will be able to start pulsing. In my experience, it is after the pulses that one sees the most improvement. But the pulses release toxins from the fully mature bugs (as they die) and therefore make you very weak for a time. But the capi is the only way I know of to combat this disease and the only way, therefore, to win.

So you are caught between a rock and a hard place and will need some help. Aside from getting a volunteer from the h.s., I would suggest you get an ssri (Prozac or Zoloft or Wellbutrin) from your doctor. It will really help you through this. 

 And keep in touch with us. We are here for you.

Nancy 

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Linda~I take it that you are

Linda~

I take it that you are battling CFSi, fibro, depression, anxiety, and IBSi but not MSi, correct?

I, too, have CFS, which we believe is infection associated.  I have high IgGi and IgA antibody titers (as high as the lab measures)  for Cpni.  I also have (or had) high antibody titers to HHV-6, EBVi, HSV1 and Coxsackie B3, B4 and B5.   I used to be very sick, both physically and brain wise (hard to think---severe brain fog.)

I am much better now.  I've had a lot of antibioticsi (but not the CAPi protocol) and lots of antivirals.   If you haven't been tested for viruses, consider doing that, for they may also be part of your problem.  Two websites which may help: www.hhv-6foundation.org< and www.enterovirusfoundation.org<.   My health journey is posted in the patient's forum of the HHV-6 website.   I have the same post name there too.

Also realize that you've been on CAP for 4 months, which may not be long enough to notice a difference.  

Best, Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/<

 

 

 

LindaYou are amazing to have

Linda

You are amazing to have gotten so far!  It is not possible for me to give helpful advice, so I will only make a feeble attempt to help.  Sometimes the only thing that let me go from one hour to the next was the awareness that "This, too, shall end".  For the most part I dislike that because it is such a flat truth.  I don't want to feed into your already heavy load, but if you can hold on I really believe you will come out the other side much better.

Your grandkids must be at least close to a reasonable age, and must be willing to help in some way, but then, how presumptive am I to make that assumption?  Are you taking all your supps?  They help tremendously. 

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am