I just had a member of this protocol email me hoping for some encouragement and hoping to gain some faith in this protocol. So I am going to post this message I sent to them here in hopes that it will help someone else who may be feeling hopeless and discouraged.
Hi (person who is sick)
I am so sorry that you have had to experience CFS depression for 20 yrs like me. I am grateful to have found a protocol that tries to get to the cause and is eventually curative and not just palliative.
You are doing great to have started the protocol. Have you tried taking Ibuprofen? I take 800 mg on really bad days especially when I want to get something done or have to be with people.
When I first started the protocol I didn't get help from the Benicar until I was on 160 mg. 120mg was not enough. I went through phase 1, 2 and 3 then after about 10 months my Vit D-25 must have gotten lowered below 20 and taking the antibiotics were too much IP for me so I have just been on Benicar only for the last year.
There is no way that the real you is depressed. I know how that feels to think that thought, I still think that thought when I feel badly. What you are feeling is "Sickness Behavior", just like what you have felt when you have had flu or a bad cold. You feel this way because of pro-inflammatory cytokines and endotoxins from the cell wall deficient bacteria being destroyed. The fact that you felt worse IP with the antibiotics should be the proof you need to establish that you depression and lethargy and fatigue is sickness behavior as your body is doing its best to survive by lowering your energy and mood to cause you to rest to conserve energy so that the energy can be used to fight the infection but instead of being an acute infection it is chronic and in your WBC's and in many of the tissues of our bodies including our brains. The "real you" has energy, enthusiasm and happiness.
You don't have mania but may have some hypomania which is hard to distiguish from just feeling great to not be sick anymore. But I definitely had hypomania and is gone now for the most part. My significant other is grateful for that. I miss having abundant energy and fearlessness and creativity but I'm willing to give that up to not have to experience 6-10 months of continuous depression and lethargy and fatigue and irritablity.
I haven't been able to work normally but I'm not worrying about it. The most important thing is do my best to get well and be of service when I can to others of my family and friends.
I lose faith sometimes when I am feeling the depression and fatigue but I don't have anything else left to try. I have been encouraged by others who have told me that almost everyone who sticks to it for 3-5 years get significantly better many cured. It will be 2 yrs for me in Feb 2010, so I'm half way there. The question is "Do you something better to try that gives you a chance to be cured of your illness?" I know I don't. ECT and Psych drugs are not a curative approach and I've also tried spiritual and various psycho therapy with little results.
I now feel very confident that I am going to eventually be cured of this illness. I have faith in this protocol and the science behind it. I have faith because others have recovered from incurable illnesses such as Sarcoidosis and the many other so called Autoimmune Illnesses listed on this site. Almost everyone who has done the deal has recovered or has become significantly better. Sometimes the tissue destruction can't be reversed, surgical and bony changes cannot be reversed, but I think that if I continue I will be lucky because I have a chance to be well with no lasting damage except the lost opportunities and relationships mainly my marriage. I have learned and experienced much from this illness and I hope to help others recover as I continue to recover.
One thing I have always believed is that the way out of pain is going through it not masking it. When I treated people with various physical pain sometimes I had to breakup scar tissue and they would have to experience severe short term pain as I applied deep tissue massage to break up the scar tissue and restore blood flow to the injured area for the long term benefits of tissue healing and long term recovery. This is the same. We have to let the body heal by experiencing a relatively short 2-5 years of pain in order to experience the rest of our lives living with more normal physical and emotional moods and energy.
I hope this helps you to have more faith and if it makes sense to you continue on the road to recovery. Let me know if I can help you in anyway. You will be in my thoughts and prayers.
Happy Holidays
Mike
see also: DrMo: Mike: Bipolar ME: Life is great when you are not depressed and fatigued.
____________________ Bipolar ME 125D52 25D37 Ph1 2/25/08 ibuprofen NoIRs limited outings covered up Depression, fatigue, myalgia. Started PH2 4/1/08 Started PH3 6/8/08 9/11/08-25D27 2-26-09-25D20 No antibiotics since 12/15/08. Benicar 160mg.10/5/09 240mg Stage 5
