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Posted 5/8/2009 4:13 PM (GMT 0)
http://lymeandtheco-infections.blogspot.com/


I feel normal today. This is simply amazing. Not sure why. Was it the gluten-free bread or a week of rest? Was it crying enough, forgiving enough, asserting enough, killing enough bacteria and spirochetes? What is it that makes us better one day only to drop away from the grace of normalcy tomorrow? Is getting better slowly more functioning days, coming on the heels of feeling as if I am relapsing into Babesial migraines. Is it the homeopathy, yoga, or doing nothing but watching Oprah discuss infidelity and working girls? Some days I am quite certain that I know how to treat chronic Lyme. I feel smarter than my doctors, sharper than my therapist. I am certain that it is the current antibiotic or supplement that I discovered in the vitamin shoppe next to immune boosters.

My mother-in-law warns me that I am becoming obsessed with my illness- though she readily admits that she could possibly do the same. We do. We obsess. It is hard to stay away from forums and chat rooms, the articles from 1994 that discuss Cerebral malaria,"a little like Neuro-Babesiosis." I believe the tick that bit us made us need to seek out other infected people, share symptoms and remedies, critique our doctors and politicians, and read about anything to do with tick-bite illness.

I feel normal but I still can't eat food that is not warm, use my right shoulder fully or book a client. My normal is not reliable. I have no way of knowing how long it will last or how good it will stay. I can not plan to go to Greece or volunteer regularly at my daughter's school. My normal is so unreliably changing, it is a secret. I whisper it to myself. "I feel okay today." Yes I sweated and ached in the night but today I feel happy, good, strong. I only tell the people that I can trust as I am afraid to lose the little bit of sympathy, help, understanding that I do get. I look so good, after all.
Posted 5/8/2009 5:31 PM (GMT 0)
pcpc,

i tottaly understand where your coming from. when i have a good day i do all i can, like walking my dogs is my fav thing and then i pay for it seems like couse it takes me 2 or 3 days to recover when i do walk. but even knowing this i walk anyways. my dream is to be able to walk daily hike trails again. i so miss it. its been 2 yrs now.

hopefully we will all have more good days then bad, to the point of not haven bad days at all.

RD
Posted 5/8/2009 6:37 PM (GMT 0)
PCPC, I was wondering what is going on with your shoulder? I have problems with my left arm and shoulder.

Posted 5/8/2009 6:39 PM (GMT 0)
I go from saying I dont know who I am to feeling normal about every 2 weeks, or more!! I fluctuate like I have a split personality.

Posted 5/8/2009 6:46 PM (GMT 0)
I experience the same thing and ironically when I have a really miserable day the next one is usually much better. Maybe because we "vent" and it relieves some of the pressure of all of this. I had a post awhile back titled "Do any of you have miracle days?" Its the day when you wake up and realize you are the "old you" and you look and act like you used to before Lyme.Those days are very productive for me. Then, the next day you wake up feeling like you got hit with a mack truck! lol Makes life interesting, eh?? (:  D

Posted 5/8/2009 11:14 PM (GMT 0)
Precisely why I wrote this- it never ceases to amaze me that I go to such extremes......Stutterbug-in general I (and my shoulder) are doing much better since adding in Rifampicin for Bartonella. I actually had a terrible flare of my shoulder, elbow pain and extreme delusional depression/anxiety/panic attacks. Each day got better ( I did only 300 mg the first week). Things normalized and then flared again (not as bad) when I went to 600 mg- had increased night sweats .....after a week at 600 mg I then felt the best I had felt since being sick.

This lasted for about one week. Then I got a viral infection (which I was told was a good sign!) and everything flared and Mycoplasma chest infection developed- had drenching sweats and cough and nausea/chest pain. With Doxycycline and Azithromycin (the best treatment for Mycoplasma I am told) chest symptoms improved but mood symptoms got really bad. That's where I had been until today when miraculously I feel normal with much better shoulder pain. Even my teeth (which are horrible) are better. Nights are always worse with sweats and aches. I do think my shoulder is Bartonella and Lyme cysts.

My LLMD feels I will need to be on Rifampicin for the the next 4-6 months- it is very resistant she said. The plan is to do Rifampicin/Doxy/Azithromycin and in 4 weeks hold the Rifampicin for one week and do one week of Factive. DrH was very big on Factive at the conference I attended. He feels it is the most promising drug probably cause it is new and there is less resistance and it has a unique mechanism of action. i will be pulsing in Factive over the next few months. I am hoping to be off antibiotics in ??4-6 months and then plann to stay on Zhang/cowden herbs ( I am doing them now too). My doc won't let antibiotics go until my CD57 and complement titers rise and sweats stop...

I was doing well on Zhang herbs- but needed antibiotics in addition for Bart. That is why Schaller says you need so much HH for Bart- I agree- but I think that using Zhang with antibiotics is a cheaper way to get Bart under control and then perhaps HH (?4-8/day) can continue Bart kill? (will see and report back)

I believe that most of us have Bart or BLO and anyone who is stuck/plateaued should do agressive Bart kill and see what shakes out. (Thank God I didn't listen to the Harvard orthopedic surgeon who wanted to operate on my shoulder. It has responded well to Bart treatment and Bart loves to infect bone! (shudder)).....You have to be so careful about listening to regular doctors.
Posted 5/8/2009 11:45 PM (GMT 0)
I hear you. When I am well, I feel like a different person. The problem with lyme and co is you can look good-no one knows the inner agony. When I was really sick, I got more sympathy. I barely complain anymore..my family sees me as functional, so therefore, I must not be sick. Some days its hard to get thru the day. I have almost forgotten what it feels like to have a "normal day"

How much HH do you take with your abx? I did the rifampin/doxy/zith thing for 3 months..it was rough-lots of psych issues. But I feel a lot better now!

 

Posted 5/9/2009 12:03 AM (GMT 0)
4 HH / day with circulation P (3/day) , IC3 (3/day) and artemesiae 6 / day , Artemesinin 3/ day and I plan to continue Pinella (Cowden for Babs) and I plan to add (Zhang) Coptis, for Lyme/liver support, 6/day.
Posted 5/9/2009 4:18 PM (GMT 0)
Keephope: I was told and experienced that when you are very sick with Lyme/Co your body will not recognize most viruses. The up side is that most people with chronic lyme (and chronic fatigue for that matter) do not catch colds and flu. Their immune system is too dysfunctional and overwhelmed to bother recognizing trite viral infections. I look at Lyme as a disease with layers. Until you treat Babesiosis and Bartonella you cannot begin to really rid the body of Lyme. And, until Lyme and Co's are treated, you can not get at Mycoplasma, and the other chronic viruses harboring inside our cells/tissues.

Many people have chronic infections but if they are in good health there is no problem. For instance, Chicken Pox goes dormant, and only if you are under stress, aging, worn down, will you get Shingles. Every one accepts that. It is no surprise then that as you treat your Lyme and Co's you may not get fully better because of lingering (reactivated) EBV (Epstein Barr), HHV (herpes), CMV (Cytomegalovirus).... This is why many of us don't get fully better. I do believe these viruses are treatable but you can not begin to treat them until your Lyme/Co's are under control/gone. There are antivirals (not that great from my experieince, but some people do get better and many herbal/homeopathic soulutions for viruses- Zhang uses Olive Leaf, there are many more....)

And of course on top of all of this you must detox, help the liver, heal the gut and control autoimmune inflammation......it is a puzzle that can be solved but no quick fixes.......this is how I see it.

So you can see why I was sort of excited when I finally caught a cold (first in 2 years), but unfortunately that unleashed my Mycoplasma, that I am now mopping up. I am however doing better now...nights are always worse -- why is that??
Posted 5/10/2009 1:38 AM (GMT 0)
pcpc what do you do to detox and to help autoimmune inflammation?

Thanks.
Posted 5/10/2009 3:37 AM (GMT 0)
Funny thing that you posted this because I have completely changed since yesterday. Last night was the full moon which always throws me into a flare or herx - hard to say which one. My pain in my arm has been getting worse over the last two weeks (moon waxing) until I went to physical therapy and decided I was permanently disabled. Yesterday I had a bad headache all day. Around 9:30 PM my time, the moon was completely full and shortly afterward the headache was gone. This morning my arm felt FINE. I could move it! It hurts now just a little bit because I probably overused it today but I can use it, lift it, comb and brush my hair. . . . do things!

I too feel normal! It a miracle.

I agree about bartonella. I thought it was lyme that made my muscles twitch, gave me chills and pins and needles. I blamed lyme for my mental fog, depression and lack of joy in life. It was bartonella because after treating bartonella all of that is gone. I also believe it is cysts in my arm and back that become active or are being attacked. I think that is the lyme disease. I read when you take out the bart, lyme becomes much more active because bartonella keeps it suppressed. I hope it is a good thing - a herx - and not just a flare that is subsiding but will soon be back.
Posted 5/10/2009 9:21 AM (GMT 0)
I go through the same exact thing. I felt pretty good yesterday and had a few days of feeling good about 2 weeks ago. It had been a while since I had good days because I had been down for 3 months straight. That was the most miserable time of my life. I didn't think I would make it through. I think this disease makes us all more humble and makes us appreciate life alot more. I know I do. I don't take little things for granted anymore.

I wonder what happens when we feel like our "old selves" again? I wonder if Lyme and co-infections are hiding? Maybe our bodies are trying to work and they go into hiding for a while. I don't know but I'm like all of you....able to do things again that I can't normally do. I'm very thankful for those "good" days.

Pcpc: You should right a book. You are very intelligent and I love reading your posts.
Posted 5/11/2009 12:03 AM (GMT 0)
I agree that Pcpc should write a book.
After my normal day I had the same miserable night with pain in my arm. I am looking on the bright side thinking I am herxing, driving out the cysts and killing them. I can handle that.
Posted 5/12/2009 3:22 AM (GMT 0)
I love this post. Everything said really resonates with me. When I have that rare day where I'm feeling 95%, I still can't resist telling my husband, this is it, I'm well!

Posted 5/12/2009 12:04 PM (GMT 0)
Thank you Pcpc for being so open, just to add my two cents, you would do well at writing a book. I hadn't realized the moon was that much of a factor in how we feel. I was hoing that I was herxing when I was feeling worse, or blaming it on the whether changes, but this was at the end of nine days of rain in PA. Now I feel almost normal in the AM, and I'm trying to keep record of what time the pain begins in the afternoon. Yesterday, it was only muscles though, not joints or the varicose vein in my leg that had been throbbing for days, so was thinking it as a good sign. Maybe it's just the moon phase, though? How the heck are we supposed to tell if we are improving?! By getting a cold I suppose!
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