Topic: Can you get better from doing Nothing ? Has Anyone ? I Can't do this anymore !
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I'm seriously considering taking a break from everything for a while. Seems like I can tolerate a few days of something, then Bamm, my Autonomic Dysfunction and Encephalopathy kick in.
Takes 6-10 days to get back to where I was. It doesn't matter what it is I do:
Salt/c, Rife, Herbal tinctures, IV/Oral Abx. They all seem to bring on these god awful Neuro Head Herx's from Hell. And... I guess b/c it's causing the head symptoms, the Peripheral body symptoms like shortness of breath, Postural Tachycardia, Anxiety from hell, etc. all just exacerbate.
Every time I get like this, I just want to be dead. Then, I look at my kids and say, Nope, I got to be there for them.
I just can't take these Herx's anymore ! I literally feel like I'm dying for those 6 days or more when I get into trouble.
My only other option is to take baby doses and hope it does something.
I know some of you are bed ridden and have daily seizures, etc. I've seen the videos on youtube and elsewhere. My heart goes out to all of you.
For me, I just can't handle the CNS overstimulation. I wish I knew how to get it under control as I could handle the Nausea and other stuff... It's all Autonomic Dysfunction and I guess some Encephalitis mixed in.
I've tried antidepressants, but it's not a real depression. The anxiety has no source and Xanax doesn't touch it.
I have spent more time researching all of this then most people. The blood work I have shows so many things whacked out like Cortisol, testosterone, Neurotransmitters, etc.
There is no way to address each and every one of these.
Too much stress in my life got me sick in the first place. Every time I Herx, I'm stressing my body more. Perhaps, just letting the body rest and removing stress from Herx's and other sources within my control would help me.
Has anyone ever gotten better by doing nothing and letting the body try and take over ?
Don't mean to hog the board the last few days. I just don't believe in being tortured and I've seen so many LLMD's. I've stuck with the same one for over 2 years now. Did IV, Oral, and of course Rife, Salt/c, Herbs, etc. I do ok for the first few days. In the end, I'm not sure I'm any better. My posts from 3 years ago on here complain about the same exact things. That is how I am able to measure my progress.
Whats sad, funny, and true, is when I put in a set of symptoms in the search box, and my post from 2009 comes up. I read it and it's exactly what I'm dealing with now.
I'll try not to complain anymore this week. I thank everyone for their support as always. I wish I had the answers for everyone.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Maybe not "nothing", but maybe really taking care of yourself. Great diet. Lots of rest and sleep. Recreation (good for the mind). Sunshine. Exercise.
Before I got bitten in 2003 or so, I had put Lyme in remission from exercise and diet. It didn't work after that next bite ... I think the bacterial load, or coinfection load was too high then. Dr. B has also said somewhere that he has seen it go into remission from exercise alone.
I think my pilates is part of why I reached remission. I finally got all the way to remission when after I started it. I got a LOT better on photons and detoxing, but it seems that exercise pushed me to wellness.
So maybe take things to support your body, and do things that are healthy .... you can always go back on meds later.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
My opinion - up to you if you want to take a break - it's your life.
My opinion #2 - it's best to support the body in some way, whether slowly or more quickly. I need to go the slow way, since I can't handle the stronger way.
My Lyme doctor does do bloodtesting with me and makes some treatment decisions based on those results. When you mention low cortisol and testosterone here, for example, he would be working on that kind of thing,
and, he knows how to do that. I do not have his knowledge of the order of using supplements in order to boost a low count.
What about finding a good complementary med doctor who could work with you slowly to boost the things that seem low? That's one of the ways I'm treating, is slow boosting with supplements.
Posts: 13171 | From San Francisco | Registered: May 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I agree, if you have hormonal imbalances, work on those. Work on things that aren't infection-related during your break, whether it's a permanent break or temporary break.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Robin,
My only problem is that as an RN, I have always believed in the Homeostasis theory.
So, if my Testosterone for example is low, perhaps, it's low for a reason.
I tried Beta Blockers for my POTS for example, but I never felt better on them. My heart rate would just be under better control. In the end, I went off of them and said, perhaps my heart is beating faster for a reason.
So, unless something is unbearable, today, I don't really treat whatever is low or too high. Again, it would have to be life threatening.
Not sure if this is the correct approach or not. But if I jack up my Testosterone for example, then it may throw something else off.
Not sure if that makes sense or not.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
That does make sense. However, you want to reach a new state of homeostatis ... with this one you feel bad ... reach a new one and maybe your infections won't be out of control.
I didn't try to get rid of every bacteria .... I tried to make my body live without so much fighting going on inside ... Increase the good, diminish the bad ... make the body better for the good stuff so it's hostile for the bad stuff.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
what up gary, i feel for you and feel exactly the
same way thats, y im not treating either, cant
handle the neuro stuff, even though im fried out
everyday anyways, cold beer and a xanax is the
only thing that helps me and i dont care what
anyone says, the neurological stuff from this is
horrible, and you no what kinda scares me, your
one of the most educated members ive ever met, and
ive watched all your vids and talked on the phone
with you, you no more and have treated more, and
do all your own labs and ur an rn, its like
having our mentor kinda at a loss for the
answers,, scary, hang in there and im pullin for
ya bro, hang in there,, Trav form calli
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Hang in, I'm on so much, don't know what's what, it can't stay like this forever. I miss thinking like me much and breaks my heart that I don't know how long I have to go through this. God bless, hold on. I saw a little breakthrough on rocephin, but when salt crashed so did I and there's no inkling when or if. It's a scary place.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I thought homeostasis was when things were in the right balance with other things...thus low hormone levels would suggest lack of homeostasis????
Aerobic exercise (jogging, etc.) when one has adrenal exhaustion may lead to adrenal crisis. Not a good idea...
Resistance exercise is ok, if done in moderation.
The Dr. B agrees with this about the exercise in his guidelines...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
My kids are 18 and over, and I worry that all they will remember is mom being sick.
But they do keep me moving - thinking of how much I love them and still have so much to enjoy with them....
So keep on pushing through, I figure something has to come through some day.
I have hope I will be better some day! Hope with me....
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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I can't take it anymore either. I have the exact same symtoms! I've been in bed alllll week and most of last week. My anxiety level goes out the roof, I think I may have seizures, shortness of breath, tachycardia, head surges, and anxiety from hell!!
I'm so worried my son is going to grow up thinking his mom is a complete nut job and needs to be put in a psych ward.
Yesterday My husband found me laying on the front porch. I was trying to do something to get rid of the horribleness of this disease.
I'm scared I'm going to die! I'm not seeing any improvement! I know I have to go through this but can I stand it! It's like being tortured by the enemy constantly! I'm right there with you.
Posts: 415 | From USA | Registered: Jun 2012
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
The head stuff is absolutely unbearable. I can't shake the head pressure either. It makes life tough to live. Very depressing. I have had almost constant headaches the last 4-5 days.
I don't know if you can get better doing nothing, but you can't get better feeling like you're going to die every single day IMO. The truth is I read this board daily, but now take EVERYTHING I read here with a grain of salt. I always read the 'I'm in remission line' and 10 days later the same poster is saying they are sick as hell. Cure means little to nothing here it seems.
Only WildCondor and a few others ever made it to the other side. Herxing to death's door doesn't seem to be the magic bullet for most. I truly believe most here, me included, have not a damn clue of exactly what illness / bug is harming them. We guess and guess and guess along with the LLMDs. All guesses.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
quote:Originally posted by Messa: Lymetwister! You are me and I am you!
It's like being tortured by the enemy constantly! I'm right there with you.
this is really getting sad and I am POSITIVE about life...
so many with chronic lyme and SO FEW CURED... I ain't mad, but, really cured.. its like the guy that said "a vineyard really" I do believe some have found a outlet to relief after an awesome amount of disciplne and life changes, or did I miss the easy fix. ? like the guy who had chronic lyme and bamm 6 months later was back in the dance of life... I am so sorry its so easy to be negitive and so hard to be Positive.. If you stop all treatment, the first time you bottom out you will be like me and say no way am I every stopping again... HERXING this week hard and its gotta be 100... you will find what your limits are after yrs of being a VOO-DOO Doll . . . we're all in this together and we're all pulling for you.. rest well when you rest !
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I really feel for you guys that are not getting better and I can't help but think you must be missing something. What?
Start with, why are you so sensitive? If you have $500 to spare, beg or borrow, get the complete methy cycle panel done. It is senseless to try this and that like throwing everything at something seeing what will stick. You need to know your body's needs; what it is missing to optimize your ability to heal.
What works for one person will not necessary work for someone else who's body chemistry is completely different. For instance if you have a CBS mutation (and most chronically ill people do) then you cannot tolerate sulfur in food, supplements or drugs.
You build up excessive ammonia in your body. Getting rid of the excess ammonia destroys the molecules that generate serotonin and dopamine so you have anxiety. This mutations also causes brain fog and excitotoxins. You are in the dark. You need to find out what is making you unable to tolerate the treatment.
Other things that can be caused by the mutations that contribute to disease are hyper coagulated blood, iron overload, inability to assimilate B12, folate and vitamin D. You blood can show high levels of these vitamins but that does not mean you are using them. And if you supplement the normal kind you just makes things worse.
So if you have an iron overload and you are supplementing with vitamin C (because someone told you it worked for them) that vitamin will cause you to store even more iron. This feeds the bacteria and also causes damage to your organs especially the brain, liver and pancreas. Use your scientific brain and get nitty gritty.
Next thing to consider is, are you treating the right infection? I got to the point I could not tolerate the abx or anti malaria's. I was collapsed on the floor 4 months ago certain that I was going to die because there was nothing else I could do. Well, that is about the time it dawned on me I might have protomyxzoa.
My tests were positive for bands 23 and 41 which often indicates it. My CD57 was very low even though I was not having the 28 day cycle of flares. I had other symptoms too - the fatigue would not go away and I could not think worth a hoot. I was getting pain in my joints and muscle, headaches behind my eyes.
I do have it. I started treating with the low fat vegan diet and improved. That is close to doing nothing so you might want to try it. When I added the stromectol, I really improved. I am MUCH better. I would say I am 95% and it happened quickly.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I posted about my hair falling out...seems trivial compared to this. Depression and anxiety are theeee worst! When we're free of that we can handle the physical stuff.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
nefferdun thank you for your input.. its refreshing to read your finds.. after seeing 20 doctors and have about the only LLMD near to me.. my trusting that these MD's and my LLMD have done every under the sun.. I don't recall doing the complete methy cycle panel done. will, be prusuding soon.. like 2 weeks when I ask my LLMD... or will a reg MD do this for my asking ? seems like the $ is well spent here. thanks again, payne
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
It's late and I'm on my way to bed.... But to answer your first question, I got completely better on my own with no treatment when I contracted Lyme in 1998. I was never diagnosed correctly. But my symptoms were very specific and very strange. I was put on pain medicine and 2 years later I was totally better... I literally lived a healthy normal life for over 12 yrs.
Then I went through a very stressful period of my life about 2 yrs ago and then my "strange symptoms" came back. After many doctors and research, I went to an LLMD and tested positive for Lyme.
I asked my LLMD about it and she told me my immune system was likely compromised so much from stress that it left a window for the Lyme to come back. But had I not gone through that prolonged stressful period in my life, I easily could have been well forever, with no treatment needed.
I will tell you, that I had no CNS symptoms. All only physical... Joints, muscles, etc.
Posts: 8 | From baltimore, MD | Registered: Jan 2012
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
My sister got well with diet alone and this is a few weeks/months after getting bit. She was deathly sick and in bed for 4 months and when she got better and she finally got a local doc to gIve her 1month of Doxy.
The only thing she has, some 7 years later is random twitches. Meanwhile before she had blurry and white vision , extreme noise sensitivity, nausea, vomiting, fatique, painful and swelled joints..etc. Do I think she is cured, nope. I think she is in remission and could remain like this for life or until the next big storm.
I know of another lady who got bit over 10 years ago and only took 1 month Doxy. She remains sick to this day with an assortment of symptoms, including shortness of breath and I can hear her struggle to talk and breath over the phone at times. She says she has good days too and is fooled at times into thinking she is on the road to recovery.
I have daily migratory symptoms and that is with ABX, meanwhile she has them without. Go figure?
Almost as if the ABX is doing nothing, except for bringing down my immunity and slowly spreading this hell.
Who do we know that got mostly well, at least 95-100%? Gael, TF, Dr B, Pamela Weintraub, WildCondor, Lady Barbera (but who is now fighting cancer).
When someone like WildCondor states they have their life back, what does that mean? They are no longer bed bound, but still have small manageable symptoms? Are they 100% symptom free?
I've been losing hope as well and this and every aspect of this is so sickening.
Posts: 2094 | From NY | Registered: Oct 2011
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posted
Hey Lymetwister. Yes we do need support. No on else understands. I know God is there but I can't feel him right now.
How do you get through your days?
Posts: 415 | From USA | Registered: Jun 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I have to agree with everything Nefferdun said.
I also have nothing but compassion for everyone here. Hang in there. You're not alone.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Here are some of the symptoms of the protomyxzoa. 90% of us have it.
Symptoms of FL1953 are similar to Babesia. Symptoms include cold hands and feet, headache behind the eyes, scalp sores, sinus congestion, notable teeth pain, heart palpitations, shortness of breath, dry cough, abdominal pain, nausea, IBS, insomnia, sweats
, bladder pain, muscle pain, twitching, profound fatigue, exercise intolerance, insomnia, brain fog, poor balance, anxiety, OCD, irritability, hypercoagulation. Off and on hoarseness can be a symptom of FL1953.
Someone posted the pain in their legs went away while on stromecto. Mine did too so that must be another symptom. I always thought it was bart. I also had other bart like symptoms including irritation with outbursts of rage and terrible insomnia.
Try treating this. It is easy. You can save money doing the diet. It is good for your children as well as yourself. Take a vegan cooking class. Make it fun.
You can buy ivermectin at the feed store. Start with a very low dose every other day or so - as much as you can tolerate.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I've had those thoughts too. Hang in there. There is so much wisdom on this board. I agree now that addressing all the needs of my mind, body and spirit will be my saving grace.
You are not alone...fortunately, and unfortunately
-------------------- PHOENIX: mythical bird that rises from the ashes July '09 got sick very quickly could barely get out of bed - ND diag lymes.. and the journey began bite: unkown - no rash Posts: 248 | From private | Registered: Jul 2010
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Prayer (could you find a church with a labyrinth? it is a form of walking prayer)
Yoga - NOT yoga at a gym, but through a more spiritual practioner who can guide you through beathing exercises (pranayamas), etc
Body work - look into Jaimen McMillan's work on Spacial Dynamics. The book The Fourfold Path to Healing gives specific exercises (more like postures than anything else), or you could work with a local practioner.
Feldenkrais Method
All of these could help with CNS problems without causes herxes. I'm assuming you've ruled out mechanical problems like compressed nerve, degenerative disk, etc. As long as you don't have mechanical problems, the above methods shouldn't hurt you.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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posted
I agree with what Garden said. Those are great ideas. I have not been actively treating for 2.5 years except with supplements. I believe lyme and co is not only a physical disease, but also emotional and spiritual as well. I suggest reading The Healing Codes and the Emotion Code. Be sure to read the reviews of the Healing Codes about how hundreds of people have helped themselves get well by doing the codes for seven minutes three times a day. I am two weeks in and it has helped my depression immensely. Wishing you all good health very soon!
Posts: 123 | From Montana | Registered: May 2009
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