some advice and input

March 20, 2007 at 7:48 pm

Hi dj,

I was diagnosed with chronic neuro lymes conclusively last year in August and this January diagnosed with CIDP as a result of the lyme’s. Lyme’s is notorious for triggering an autoimmune attack. My doctor is based in New Jersey if you are interested message me privately and I can give you her contact information. I have a lot of speech issues that increase with my symptoms i get chills, i never sweat, i cant climb up a flight of stairs without losing my breath, I have a neurogenic bladder an enlarged prostrate and I still have not been on any treatment at all for CIDP as yet however my doc recommends IVIG 2x a week for 6 months. Recently she attended a IACFS conference this is for chronic fatigue an fibromylgia. A lot of patirnts with chronic lymes or other autoimmune dysfunction suffer from CFS or FM. For a while she had taking the following supplements and I strongly advice anyone on this forum to be on these because they can dramtatically improve the quality of your life as well as improve fatigue and vascular health

l-carnatine 500 mg on an empty stomach, 3000 mg omega3 but make sure it is pharmaceutical grade or the label says that it has been purified of mercury which is incredibly harmful to any of us please take the omega 3 with food and the 3rd supplememt was CoQ10 this is not considered a supplemet in Europe but an essential medicine. The combined effect of these 3 togther can even help those with poor cardiac functon. This will give you some boost with energy. The prescription medicine she prescribed me for mental accuity and energy was provigil and it works okay for me. I am taking so many anti spasmodics and a high dosage of neurontin as well as klonopin which have a sedatory effect so I really need to time my provigil to be effective i take 200 mg i split the tablet and and take 100mg at different times of the day especially atleast 45 minutes after a meal. Provigil is different than adderol or ritalin because it is not an amphetimine. As far as pain meds I can’t do narcotics because they have a bad effective on my digestive system but if you are in pain and can handle them get your doc to prescribe it for you. My doc she prescribed duragesic patches of upto 100mg for me, i did not tolerate it well at all and they are ridiculously expensive as well as regulated. if the pain you are expereincing is in your shoulder or in your joints Trammadol works really well for it. If you are taking neurontin if you can take paracetamol along with it it enhances the effect of both medications (this is something i read on a post here and found it truly works). My doctor works really ahrd to be up with the latest in research and based on her recent conference notes there are other supplements and tests and medications to work alongside IVIG treatment. I would recommend consulting with her if you like she is really god with what she does however she is not a neurologist so you still need a good neuro for your psychotropics (i dont have one as yet at all).

I was very moved to hear about all the personal problems that you are having to cope with and somebody earlier responded that it would help in your healing if you could not take on so much stress as that is as detrimental and probably times that you find that your symptoms are most accute. I never truly understood what it means to be carrying unresolved anger, chronicly living in stress. I was in a hospital last year for 2 months where I had the good fortune of meeting a really wonderful lady a practicing psychologist who coaches exexecutives in how to undo their stress. Her name is Janine Sagert and you can access her programs on www timeoutforbalance dot com. What was wonderful though was Janine is a friend of a spiritual teacher (if you can call her that) Byron Katie. Byron katie is very well known and followed for a program called THE WORK. I can assure you it is called the work because it is truely work but Janine took 2 hours to have me work through the work sheet that can be downloaded from katie’s site. www thework dot org. It looks really simple how difficult can it be 6 questions to answer and 4 questions to apply to each answer so so easy. The topic I picked to work on was my anger towards all the doctors i saw over a period of 2 years who i saw as the most disgusting creatures on the planet for letting me suffer the way i perceived that I was suffering without as much as offering me a tylenol for pain. the key words here being “all” doctors and “my percieved suffering”. Suffering, pain, negative emotions, stress, anger are all personal expereinces that any individual finds them selves encountering at at least some time within their life time. When these thoughts of stress/anger/guilt / any negative emotion becomes chronic it leads to harmful effects on your helath and extremely harmful with individuals with autoimmune dysfucntion as they are a known “probable cause” for triggering even the onset of GBS/CIDP. Getting to the point doing the work for the first time with Janine all I was experiencing at first was an increase in my anger automatically I clubbed janine with “all the other doctors” who did not have any compassion for me and i could not believe why was she asking me to turn around how i perceived in my mind the doctors treated me (which was so real a thought and possibly even a true) but it was still a perception in mind of what I felt like by their handling of me. To turn this around meant i had to in my mind imagine I treated the doctor with the exact humiliation I felt that the doctor had treated me. It was really hard for me to do this and I mean really hard to turn it around but I did for the sake of the exercise. I turned it around and I got the shock of my life I realised that all this was unnecessary mental chaos in my mind, i could never truly no for certain if the doctor treated me like a “leper” nor could i be uncertain that I never thought of all doctors in plural good or bad as “disgusting lot of money hungry jerks”. certainly there are a lot of excellent doctors that cannot be clubbed in with the whole lot as the same as we can be certain there are good things and bad things that happen to us all the time. The freedom was recognising that this was a battle in the mind, the mind being “my mind” so part of the work is what would i be without the thought and the answer to that was i would be ” so much freeer from stress and this immediate wave of lightness fell over me and i went hmmmmmmmmmmmmmmm wow this stuff is interesting and I cannot describe in words but a huge knot deep inside of my body started undoing from that night forward and I cant promise you it stays forever unknotted or you wont expereince negative emotions again. I would be lying. I am headed to a local bookstore tonight here in chicago to meet with a group of people who gather once a month to do the work togther. I had the chance to meet katie in person march first at the same book store and today is my first time going. I know how much it allowed me to undo my stress and really start examining my thoughts and the cost benefit of living a stress free life.

This might surprise you I have no medicaid/medicare/ssd I am working on it now and I go to free clinics and the county hospital and receive no financial assistance for my medications or the cost of living without being able to work but somehow the universe provides me with what I need and I dont stress over when IVIG will happen for me and I don’t live in constant fear and that in itself is so freeing. We don’t know how light life can be when we are willing to make the choice of dropping the dead weight of it all. Making the choice is the key word here in face of hardship yet if you are able to smile and go on to the next minute you have suceeded. I sincerely hope you check out these resources and they are as helpful to you as they were for me. Concpetually and intellectually beleiving something is different from feeling that in your gut so until you dont actually do it concepts are simply that concepts and it takes effort to even live a life free of effort and stress and oxymoron but you will see the sense in this statement when you try it.

Good luck and my best wishes to you and your family feel free to contact me if you have any questions or need any clarifications.

Gopal Vazir