my story...

Submitted by johnwilbanks on Sun, 2007-11-25 18:22

Ok, my name is john. i'm going to try to write this quick and keep it relatively short because my thoughts come and GO pretty fast. i've gotten used to it and it only irritates me in times like this when it's important for me to get the thoughts on the paper fast. I'm here because of a friend and a discussion that we were having about the length of time someone can have these problems and still be moderately functional as a person. JimK's name was brought up because apparently he had this problem for quite some time. i would have written him directly but i thought it would be more appropriate to do this...

 you may notice that some of the parts of this blog may not be in the right order. that's ok, i have to write before it goes away. if you choose to read, it will make sence in the end, but you must take every word literally.

anyway, my problem is this:

since i was a child i have had some sort of a problem (that some doctors think is ADD) that makes it hard for me to focus or finish things. my memory is questionable and my body is (in my opinion) not the way it should be. i'll get to that later. i was very athletic and good at it as a kid although i would hit a ceiling to that i couldn't get past. my grades were always ok, but nothing would make them fluctuate. slacking or studying.....nothing but c's. nothing has changed for me (it seems) for my whole life, only now, i'm older. i still look, feel, act, have same memory, absentmindedness, sleep constantly,weight, height  as i had when i was 16.

to me, it feels like something is terrebly wrong. i am on the outside looking in on myself. most doctors smerk when i tell them that. i've since found a good one, but i'm nowhere near rich enough to pay for all the time that i would need to convey all the problems that effect my life. he has found CPN though. i feel lucky to have him because most doctors smerk at me and send me away. (i'll explain why).

as i live everyday, i am immune to symtoms. it's hard to explain what i mean exactly but in a nut shell, i can't tell you what's wrong with me except that i'm absent minded, inconsistant. when i feel bad, i don't know why. if i take medicine, i don't know what it does except that i am not sick anymore or my headache is gone. i am oblivious to clues or effects that go on around me or happen to me all of the time. i cannot remember instances. i cannot remember anything of importance to other people and i cannot seem to be able to do anything about it. it does help to write things down, but to make that effective i would have to write a book everyday and then i would just forget where i wrote what i needed. everything takes alot of time. it would seem like i might be a perfectionist or OCD, but i just loose interest of the sort and drift from one thing to the next. i can hardly hold a job. i seem to be able to do a couple of things consistantly but nothing that supports me. i do know that it is getting worse. i guess that has changed from when i was a kid. after many years the same friend on this site (that most of you know of) has coerced me to going to this docter who diagnosed me with CPN, EBV, Chronic Fatigue, Mycoplasma and said that is as good of a place to start as any. ........


well, it seems my story is over. i know i had much more to write just a moment ago, but it's gone now. sorry if this kind of skips around. its hard to tell you what i need out of this. i guess i'll just try to sum up what i wanted to know in the first place....and that is: if jim had a similar problem for such an extended amount of time, could my problems which started as a kid (small kid) be related to any of the illnesses that i have now found (and seem to be getting worse)? the illnesses are listed somewhere here. my friend filled out the blog sheet for me (because i don't know most of the names or regimen of drugs for the illnesses). i'm 31 now. the problem is only growing. i just need to know if i've got any chance of changing back into the person i see myself as......or living a normal life.











Welcome aboard John,

this site is a gift.  There is great support here & information for you.

Best wishes for the best possible recovery journey.

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 10-30-07 3rd pulse 2 X 250 mg 2day

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Hi John, welcome to our community. Sounds like what you are suffering from is brain fog. If your doctor found evidence of all those nasty infections, the toxic by products of the organisms are wreaking havoc with your nervous system. I have also struggled with brain fog. Just before I went on the CAP treatment, I took a class in a software application. It was a real struggle just to get the assignments done. Now two years later after being on the CAP, I can pick up a manual and learn just about anything. If you are starting the CAP (combined Antibiotic protocol) expect the brain fog to get worse due to die off of organisms. It did for me. But then things will improve. You have come to the right place. Raven CAP since 8-05 for Cpn and Mycoplasma P. for MS and/or CFS

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

Welcome John, I agree with Raven that you are suffering from brain fog. If you know Jim, then you have had the best advice. And you are only 31! You have time for total recovery. So glad you are here.


Rica PPMS EDSS 6.7 at beginning - now 2. Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 48 pulses NC USA

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

Hi John, and Welcome!

The problems you're describing with the ADD type symptoms can be attributed to CFS.  CFS can also start at a very young age, so you may not remember your life being any other way.

Have you been treated for ADD and found that these problems still persist?  Have you been tested for sleep disorders, which can also cause this type of symptoms? 

If you've been through it all, which you probably have by now since you've been having these problems for so long, this may be a solution for you.  I can let you know that I understand writing one paragraph with an idea of what the next one will say, then getting to that next paragraph with no clue of what it was going to be!  The brain fog was the first symptom to improve for me with the CAP, but it's not gone by any means.  It's still a big issue when I'm tired.  I'm still early in the CAP, though.

With the brain fog being your biggest issue, it will also probably be the most difficult to overcome, but when you do, you'll be amazed at how wonderful it feels. 

Since you are having so much difficulty, I'm glad you have a friend to help guide you through all this.  The reading can be extremely difficult when the brain fog is present!  Also, I'm glad you seem to have found a good doctor who can understand what you're going through.

Best wishes to you on your road to recovery!  I hope you find the answers you need, and I hope that before long you'll even be able to understand the answers much more clearly!

Finch - Western PA USA

ME/CFS since 1991 - CPn diagnosed June 07 - began Cipro 750 mg 2x per day - added NAC 600 mg 2x per day July 07 - Stopped Cipro and began Doxy 9/10/07 - 100mg 2x per day on 11/3/07 - Azith 250mg M-W-F started 10/10/07.    

ME/CFS since 1991. Cpn diagnosed 6/07. CAP started 7/07. NAC 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyl to Tindamax 500mg 2x per day for 5-day pulse.

Hi John.

Brain fog, autism, ADD, dyslexia all could be related to a possible infection in the brain (Cpn?).   My daughter with MS has a couple of these syndromes. The brain fog is a thing of the past for her, one of the real improvements she has experienced, her memory is also vastly improved.   It is probably too late to make much difference to her dyslexia but she has learnt some great strategies for coping with some of the problems and she seems much more able to put them into practice now.

You have come to the right place.   Things will improve now that you don't feel so isolate by doctors' disbelief.

Michele (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.