Layers of problems

First, thanks for the encouragement from everyone. It's been a really bad week - I would say I was suicidal several times. As with many of you, so much is going on in addition to whatever the CPNi is doing to my body. I am taking appropriate meds for it all and seeing my docs.
 
While laying in bed with too much time to think, these are the layers of problems I came up with.
 
1. General Anxiey Disorder - diagnosed years ago while raising and homeschooling five children ages ten and under. Marriage problems added to the anxiety.
 
2. Panic attacks - I had some even as a child, but didn't know what they were. First really bad one occured after hubby left for the desert. It lasted ten hours. Took about two weeks for my body to recover from the stress of that! My youngest was about eight at the time. I consider the panic attacks as the way my body lets off steam when too much anxiety builds up - like a pressure cooker. Added Xanax as needed.
 
3. Depression - I've had bouts of depression since my first child. Sometime after my panic attack the docs started trying to combine meds to find the right one to fix everything. To me, the depressions seem mostly circumstancial, they just stay around way too long.I think I have a right to be depressed. My life sucks.
 
4. Fibromyalgiai - I began to have pain in many of the 18 tender points. Fibro fog - although I didn't know there was a name for it. And I realized I just couldn't do as much as others around me, that I had to plan my activities and be cautious of overdoing. It was ten years before I finally got a doctor to diagnose fibro.
 
5.Circumstances - My kids are all finally grown, but kept coming home for extended "visits." They know better now. One daughter decided to leave her two babies (ages 2 and 3) with us to raise. That was nine years ago and they are ours now, one is bi-polar, the other probably aspergers. Our daughter definately has a mood disorder - no insurance to be treated - but she can't help with the girls. The father of the girls has been in prison most of their life and I hope he stays there. 
 
So...., now I'm 56 and all this collided like "The Big Bang" or maybe imploded would be a better description since my world got smaller. The next step is to decide what one decision or change can be made that will make the most difference. I want a life back. CAPi may work in the long run, but I need a short term fix. I feel worse on the meds than off. I gotta get these girls raised or give them up. Neither seems possible right now.
 
Thanks for the whine and cheese!
 

Comments

Hi I don't want to hijack

Hi

I don't want to hijack hsnana's post so We can start a seperate post 

I will do that and call it Ketogenic diet 

 

DAILY:  NACi 2400MG , DHEAi sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

Homina,Thank you for the

Homina,

Thank you for the comment!  I am actively pursuing (meaning so preoccupied until I have a plan lol)  a solution to my dietary challenges.  

I am interested in this concept.

Would it be better to open up a new topic?  

I see now that I may have not done this correctly.  :(

 Thanks again!

 Lorraine 

 

Hi Paul J Through experience

Hi Paul J

Through experience I have found that a high fat diet like the one you mentioned with periodic fasting works very well for me

It doesn't get rid of Cpni but it helps

 

DAILY:  NACi 2400MG , DHEAi sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

Paul,   I read your email

Paul,   

I read your email with great interest as well as many many others.  I so appreciate the time folks have put in to share their experiences.  I didn't realize how lonely I was until I spent hours and hours reading the comments.  It was like finding friends.  :)

Porphyia has been so awful.  A mixed bag--isn't it?  :)

I have been doing an experiment on myself this past month.  Carbo-terian! Honestly--I just am having difficult keeping up with the eating.  So, started charcoal, tons of water, buying Tagamet tonight, glucose tablets and  carbing every few hours including nighttime if necessary.

No alcohol--one glass of red wine puts me under the bus.  Everything that has been recommended has worked--THANK YOU everyone!  Miracles of miracles I didn't gain any weight--grateful for that.  But I am having issues with this way of eating.

 I have been trying to see if there was a way around the carb intense way of life.

Due to my son's Asperger's (recovered--21, college, working) I have been heavily involved in diet studies and changes.  It has been a haul.  

SCD, BED, Gluten free, casein free, and on and on.  We made it through.  Worth every minute of effort.

This high carb diet--for me--is a diet likely to make me fat and full of yeast. Also, it has been difficult to remain gluten free--which I prefer.  Temptations and their justifications abound.  lol   But there is no mistaking that I feel SO much better on these carbs.  I suspect I have had porphyriai symptoms for many years.

So--I want to be healed.

Could you please expound on your thoughts on diet/porphyria?   Also exercise.

I recognize that your comments did not fall in line with the exact recommendations.  BTW the exact recommendations worked and I am so grateful!  Saved me for sure.  

I would like to reconcile what I believe regarding grains/yeast/low carb diets etc..

I would like to be more at peace with what I eat.

Thank you!

Katherine 

 

 

 

Yes, as Mackintosh says,

Yes, as Mackintosh says, just my personal suggestion, I'm certainly not trying to presume upon this site's authority.  Thanks MacKintosh. My suggestions do, however, have a lot of science behind them, which I am trying to set forth on my blog. I do believe a ketogenic diet should be the first step in dealing with almost all neurological/mental health issues.

Jeanne's points about thyroid/adrenal issues are also key, it's hard to heal without addressing those. Iodine and selenium are the first place to start, but your doctor should be testing those. It can be an easy way to make a big step forward.

Blogger at http://perfecthealthdiet.com<. 17-year chronic illness cured with diet and antibioticsi, nearly fully recovered.

Hello Linda, I am truly

Hello Linda, I am truly sorry you are going through all of this.  Not being well and having to deal with the realities of that illness and still maintain a life and home I'm sure is is very, very hard on you.  I hope you have a higer power to lean on and help you through this. 

I have read through all of your posts and can't find any real confirmation as to what your diagnosis is, and what exactly you are currently taking re ABXi (100 mg doxyi 2X/day?).  It is sooo sooo important to protect your self from the endotoxinsi (by using the moppers and supplementsi) and yeast.  Even though we think we are okay, it can sneak up on you.  Also read about secondary porphyriai.... it can cause many unpleasant symptoms..

Anxiety, panic attacks, depression, Fibromyalgiai... these all scream out as possible thyroid/adrenal issues...  There is what is called endocrine-based axiety (which can cause all of these symptoms!) which can be caused by an imblance of  the organs throwing off the HPA and OAT axis (possibly caused by stealth infectionsi/viruses).   Plus you are are at "that age" (menopause) so hormones could be out of whack.    Fibromyalgia has been linked with hypothyroidism.  Has your doctor checked your TSH, FT3, FT4, RT3 and for thyroid antibodies?   

This is not an easy road, but you don't have to RUN, especially considering your circumstances.    ABX ARE needed  to erradicate the cpni but  you can go as slow as you need to, to endure. The sicker one is, the more reactions they may have.  If you are only on the Doxy right now... that's fine, don't push it until you are able to tolerate.  It took me 2 months to build up to 100 mg Doxy BIDi, and another two months to add the Azith (and I started at 1/2 of 250 mg).  I didn't pulse for over a year into the protocol. 

Just pace yourself to your body.... the protocol is a guideline to follow...    Close your eyes, wrap your arms around yourself, it will be okay.... Hang in there, we've all been there and are here to help. 

JeanneRoz  

 

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

A caveat here; PaulJ's

A caveat here; PaulJ's suggestion is only just that - a personal suggestion. This is not a diet the cpnhelp website advocates or is involved with. It is not what you 'need' to do, it is what one individual is suggesting you do and you will have to make informed decisions on your own after perusing all the available information and suggestions.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Dear Linda,Wow! The one

Dear Linda,

Wow! The one thing I can say is that all of the four main symptoms probably have the same cause, a bacterial infection of the brain and nerves. The CFSi may reflect additional issues.

There is one step that should bring immediate relief to some of your brain and nerve symptoms. That is to practice a ketogenic diet in which you provide your body with sufficient ketone precursors every day.  Your neurons are starved of glucose by the bacteria and need an alternative.  Ketones can be made from short-chain fats and from certain amino acids, e.g. leucine and lysine. The most important step is taking 6 fluid ounces (12 tbsp) of coconut oil per day, a little every hour or two, while keeping carb intake down. (About 200-400 calories per day from starches such as white rice, sweet potato, potato, or taro is optimal. Avoid fructose - no sugar, fructose should come from berries and limited fruit only.)

Here is the brand of coconut oil I buy: http://www.amazon.com/Nutiva-Organic-Virgin-Coconut-54-Ounce/dp/B000GAT6NG/< 

Some other therapeutic steps:

Vitamin Di is important. If you haven't been tested you need 25OHD to be at least 40 ng/ml. I take 2500-5000 IU/day depending on season and strive to get as mid-day sun exposure on as much skin as possible. Supplement vitamin K2 with it.

Regular ketogenic fasts -- meaning that you con't eat carbs or protein other than the ketogenic amino acids, but do eat fats (especially the ketogenic short-chain fats in coconut oil) and fiber (e.g. vegetables). You can do a fast all day once a week or every day for 16 hours (e.g. confine carb/protein intake to 8 hour period each day).

Paleo dieting -- cut out all grains, legumes, and omega-6 fats as much as possible. Use saturated fat rich oils like butter or coconut oil. Eat low omega-6 meats like fish, beef, or lamb. Eat a fat-rich diet. Buy fatty cuts of meat, use plenty of oil or fat on your plant foods. (E.g. make mashed potatoes with butter or coconut oil, add egg yolks to food.) You want to keep carbs and protein together down to 20-35% of calories.

Iodine & selenium supplementation are important. High-dose iodine, working gradually up to 50 mg/day, is important for extracellular immunity. It won't fix brain infectionsi but it will stop many co-infections, heal the gut, and prevent the further spread of your infection. Start at 1 mg/day iodine, double it every 2 weeks, wait longer to increase the dose if there are side effects. It took me 4 months to get up to 50 mg/day but it was worth it. Over the course of a year or two it might be key to fixing the CFS.

Stay on the antibiotics (if you feel worse on them it means they're working, if you had no infections you wouldn't notice them). Fix your diet and supplementsi, and be patient. Here are the most important practices summarized at my blog: http://perfecthealthdiet.com/?p=134<.

Bless you!

Paul

Blogger at http://perfecthealthdiet.com<. 17-year chronic illness cured with diet and antibioticsi, nearly fully recovered.

Linda, You have a hope and a

Linda, You have a hope and a pain free future with CAPi. Each one of us had to hit some kind of bottom to want to get better.

Yes, nobody said it was an easy road to health, but it's wonderful to know we have a road. I would look in any direction to find

some help.

 

I'm sorry you are feeling so alone....you have to realize that the die off from the bacteria can cause things to close in making

the situation seem worse. Work with your doctor and maybe he/she can offer some input.

 

I wish you the best.

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

Linda, You have a hope and a

Linda, You have a hope and a pain free future with CAPi. Each one of us had to hit some kind of bottom to want to get better.

Yes, nobody said it was an easy road to health, but it's wonderful to know we have a road. I would look in any direction to find

some help.

 

I'm sorry you are feeling so alone....you have to realize that the die off from the bacteria can cause things to close in making

the situation seem worse. Work with your doctor and maybe he/she can offer some input.

 

I wish you the best.

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

I must stay you sound like a

I must stay you sound like a hard nail.. Many people would crack under those sircumstances...

On the other hand, I did stop the ABX-programme. I started on May the 11th, and stopped on the 5th of august. Some days feeling better, but in general I felt like having less and less energy.. My fatigue got worse, my joint-pains increased and I gained weight.. Also had big trouble with my bowel and intestine..

Now, 10 days later. I got on Berry Green, Probiotics, eat a little extra berries and fruit, plus drinking more water.. I feel better..

I don't tell you this to make you stop.. That's your decision !

I myself is a FMSi & CFSi patient, and I guess that the fact that all of us are different in many ways.. And I just couldn't go on ABXi any more..

You could start up again at a later date.. Right ?!

Just wich you the best, in what ever you choose..

Eirik

2x100mg Doxyi every day, 250mg Azith 3 days/week, 2000mg NACi daily, Vitaminsi B, C, D, and Multivitamins/minerals, Q10, Omega 6/9 and probiotic supplementsi.

I do not think there is any

I do not think there is any short term fix, otherwise many of us would dump the horror of CAPi and would propably stick to it. My friend went for the "experimental" new regimen which was day-to-day alcohol and he finaly ended up as an alcoholic.  Chlamydiae dies and releases dramatic amounts of toxins, which are very very inflammatory and damaging to your tissues. This toxic load decreases with time and becomes more and more managable from one year to another.. You have to pass some dramatic primary toxic rounds and all the things including taking care of your children should become possible..

CFSi, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine/Roxytromycine, Doxycycline 2x100mg, Caffeine every day, Tinidazol for pulsing, ACC 2 x 600 mg -  treatment duration: 24 months

Whoa! Not too much on your

Whoa! Not too much on your plate! Can't any of your kids (aunts/uncles to the two you're raising) help out??? No way would I give up the abxi; it's how I got my life back and how you probably will, too. You need some med or destressor to take the edge off, and you ALSO need to take on a little less work and/or responsibility. You're of no help to anyone if you don't fix yourself first.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi