Ohhh where do I begin???
First, I’m a 31 year old male and cautiously optimistic about this protocol and appreciate what Sarah, Katman, and others have contributed to this site and I especially appreciate the work of Dr. Wheldon, Dr. Stratton, PaulJ, and whoever else explores this pathogen as a root cause for MS. I know this is a little longer than most blogs, but I hope to show that you are not alone, even though your MD’s, nurses, and sometimes your family members think you are bonkers. I also hope to gain some insight from people that have gone through the same experiences or people who have helped in any way to fight this disease.
I have had strange correlations with what I believe is this disease for 15-20 years. Starting from the beginning to now my symptoms have progressed as follows - recurrent upper respiratory infections (every spring and every fall) since I was 12, hives, arthritis, psoriasis, chills, swollen glands, kidney stone, occipital headaches, fatigue, optic neuritis, optic neuritis with fatigue, and then a possible Herx (which has lasted for at least 2 months now) from an T2 weighted MRI with gadolinium, or this could be heavy metal poisoning (currently being tested along with all my other blood work). But I had a strong urge for LARGE chocolate milkshakes during this for about 2 weeks which I have never done (I think this craving was a result in the increase of yeast during the “Herx”). And I am recently diagnosed with MS within the last 2 weeks with spots on the brain, and O-bands with myelin protein in the CFS. Bummer….
The most curious thing about all my symptoms seems to have progressed and ramped up in accordance to medication taken in the last 2 years to treat Sinusitis. I treated my normal sinusitis to avoid the dreaded upper respiratory infection with left over Biaxin in February. It went away fairly quickly. Hmmm…that was odd. I then had surgery a month later to help with infertility. It took me 4 weeks to recover because of the dizziness, fatigue, and flu like symptoms (I didn’t know anything at the time of what was going on. Honestly, after speaking with the nurse I was taken my pain killer wrong, J, so I thought that was it.) 6 months later, optic neuritis. 6 more months later I had ON with fatigue. Did the MRI and all the symptoms came at once after I was done; dizziness, brain fog, swollen lymph nodes, chills, joint pain, fatigue, achy pains, diarrhea, bone pain, gluten and dairy sensitivy (which clears the brain fog.) This is why I believe it was a Herx. Seriously, I felt as if some dropped me off at the “You’re Screwed” train station with a one way ticket.
BTW, over the last 3-4 years I have consumed enough Red Bull, Monster, Rockstar energy drinks to keep a normal person awake for 20 years straight. I’m not speaking of one a day. I’m talking about one large in the morning, one large in the afternoon, and add another when needed. I know overconsumption is bad so I tapered off until I need to study for test. As I increased consumption to study this last fall; poof, I get Optic Neuritis and it would worsen with the drinks. Dr. said they were ocular migraines and said to stop the energy drink madness. I stopped until I had more test and a new baby in February – March. Poof!! Optic Neuritis again. Same thing. This time I went to get an MRI. What a funny little correlation, since caffeine helps the cystic state of CPn transform into a reticular state.
Just like all of you have done or will do, I have studied relentlessly for the last 2 months on the internet about MS, Lyme and all its brothers and sisters, and have found CPn in the last 2 weeks. I noticed one curious aspect of all these diseases and there ability to “mask” their symptoms as something else. All the symptoms look alike! When I told my Neuro’s nurse that I’m looking into Lyme and needed more time for the MS diagnosis, she said, “Well, they have the same symptoms. Why would you think you have Lyme?” “Okaaay, I have been bitten by two ticks in my life, there could be a chance. Duh!!” But there was something different with Lyme than with MS and my LLMD knows this: O-bands and myelin protein in the CSF; MS has them, Lyme normally doesn’t. I have read many forums, searched far and wide, to see something that might show a Lyme person with O-bands and proteins in the CSF. I finally found one person with these and has been treated with antibiotics and has been cured for many years now, also her whole family has “Lyme.” It’s a possibility that it was Lyme, but I think her disease leans more towards our newly found pathogen friend, CPn, especially with the coincidence of O-bands and myelin protein.
You see, CPn is the missing piece for me. Once I read all about CPn, it all made sense. My mother was schizophrenic (under investigation with CPn), with other complications that doctors could not make sense of throughout her body. She passed away with unknown causes. My brother suffered from hand tremors and other issues including depression. Once again, his death, too, is a mystery but probably driven by CPn. My father suffered from asthma, he administered shots when I was younger, but is better now and fights controllable Type 2 diabetes (probably not a relation). He also was a construction worker working most of his hours outside in the sun (possible mitigation of the disease). My older sister, I don’t know of anything that troubles her but she also didn’t live with us growing up until I was 10. My mother also had a hysterectomy when I was 7; things for her progressed worse since then. Mother, father, brother, and myself possibly infected before my sister moved in. I am hypothesizing that families with an MS relative also have parents, siblings, and anyone else that lives with them to have some sort of issue; which relates to a CPn deviation. The case in point is Sarah and Dr. Wheldon and many other families that get stricken with all of these fundamental symptoms from
I have convinced my Neuro to refer me to Vanderbilt for possible antibiotic treatment. I have started the suggested supplements and added Creatine Monohydrate, a probiotic, and grapefruit seed extract for the yeast. Even though creatine labels itself as a sports nutrition supplement, it has so far been useful in decreasing fatigue in my legs and other muscles. Creatine helps your body replenish ATP, the main energy source of reticulate CPn. I don’t know of any ramifications posed, but I do know I feel better with this. Matter of fact, I’m ready for some right now. Yummmmm…….
I haven’t started taking NAC; I still don’t feel right and I know my body is depleted after these last 2 months and provoking a Herx right now would just plain suck. I plan on taking NAC in the next few weeks once I have supplemented for 1-2 weeks. I don’t know when I go to Vanderbilt but hopefully I will start before the trip. I hope, hopefully someone here at cpnhelp.org will inform, that they do this for early cases of MS/CPn. I have heard that Dr. Sriram likes to use antibiotic therapy as a last ditch effort. Why not treat the root at first? If you can pull some fluid from my body and use a polymer chain reaction to identify your pathogen, why not treat it?
I like my LLMD’s approach. ”Let’s give you some antibiotics to see if we can provoke a Herx!” Of course, he thinks its still Lyme.
This is the part of doubt that any of this could be possible so….
Am I inline with my assumptions?
Has anyone else had similar experiences?
What is the norm for Vanderbilt treatment on MS/CPn?
Would I be better off doing the protocol myself?
Would creatine fuel the reticulate CPn into a stronger enemy, producing more EB’s or produce otherwise detrimental activites?
Expressed concerns 2 paragraphs up.
I hope you enjoyed reading this, now that it’s off my chest, and I hope to have abbreviated stories/info in the future as time and health permits.
Thanks for listening,