posted
Ps I did clear bart at least for the moment and I had bart at the start of treatment when I was first tested.
Posts: 42 | From the woods | Registered: Jul 2009
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posted
Thank you for the clarification about how it works, sixgoofykids.
Not that I don't have any more questions on how one could build up immune system specifically to fight Lyme, but I guess it sounds good for now.
Posts: 822 | From midwest | Registered: Apr 2009
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sixgoofykids
Honored Contributor (10K+ posts)
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posted
Well, the nosodes direct the energies to Lyme ... that's very simplistic, but basically that's it. I mean, it makes you stronger, for sure, but the nosodes point out Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Truthfinder
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posted
Mary, you said: **''So I have to wonder, if I asked him if I were supposed to feel this way by treatment three, how would he know if he hasn't questioned people and kept records along the way? How would he know what a person like me might feel like at appointment three? How would he know if I might have a delayed response to feeling better, or immediate relief?''**
After treating thousands of patients, I'm sure Dr. W. feels like he has `seen it all' at every stage of the protocol. If you were only his 20th patient using the Bionic, I suspect things would be different.
If you read most of the blogs out there posted by Bionic users, I think you probably found that no two people had the same reactions, whether it was treatment 1 or treatment 3...... what I do remember from most of the blogs is that some degree of fatigue happened to virtually everyone during the course of treatment.
Wow, you have so much OTHER stuff going on right now! Frankly, I'm amazed at what you are able to do, not the least of which is driving yourself to and from the treatments! Just my opinion, but I think you've done amazingly well, so far.
Hang in there.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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lymewreck36
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posted
Thanks Tracy, but I feel like hell. I can't believe how much a human being can stuff down and keep going. It is pure torture. My life never stops for me to get off, and no one seems to understand that. No one in my household understands that mother is next to needing an emergency room, even though they all have lyme.
The problem is that they are all high functioning lyme people, with medication.
I could crawl into bed at any moment and never get out again.
Company tomorrow,....if my husband knew what it felt like in my skin, he would have told them to get a hotel.
I have to say for all of you watching my post, that you must remember that I am struggling with lupus, and I have been suspecting that the "light" in this treatment is causing some flaring.
I have indicators that it is flaring.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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sixgoofykids
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Sorry, Mary, the light treatment is not easy at all. Be sure you get lots of rest (I read three novels the first two weeks of treatment because I was resting so much) .... you need the rest to heal.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Sorry Mary that you are going through this and I hope you start to feel better soon.
I just wanted to say for other people reading this who might be considering treating with light that I did breeze through the treatment with the only a tiny bit of herxing in the form of night sweats. My herxing was basically not note worthy. I had no heavy added fatigue during treatment or any discomfort so everyone is different and not everyone has a difficult time during treatment. Some people do.
I think it is important to get time alone and rest and take saunas, detox baths or do mineral pools and not to make any big plans for the first 3 or 4 weeks of treatment.
It is important to have a restful comfortable relaxing environment so camp grounds are out. Time alone is helpful when killing bugs and waking up the immune system. Walking being surrounded by beauty and detoxing and taking time to visualize a new healthy you are all important. Eating well is important too.
Mary is there anyway you can get away from your family while doing the Bionic 880 treatment and stay somewhere more restful so you are actually able to receive the treatment as the MD intended? I just don't want to see you not being able to rest while spending so much money on treatment.
Posts: 42 | From the woods | Registered: Jul 2009
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lymie_in_md
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Mary -- I highly sympathise with anyone with lupus. It is problematic in your treatment, but you made a choice to find some manner of arresting lyme from your body.
I suppose it is best to look at this as a great opportunity to heal. As some of the others are saying, your body is transforming from point a to point b, rest and a positive frame of mind are sooo important. So imagine this period of time is like a moth in a crysalis and hold on to that hope.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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cottonbrain
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posted
Mary, I appreciate your thread so very much. In my opinion, you are right to question. And your details are really helpful.
Especially since there are no definitive studies or even polls to show how many succeed on the therapy.
That's why people like me are so appreciative of your honesty. I really wonder if many of the people who report success with the treatment have started out at a higher functioning level than you, and thus it is easier to mop up the remaining infections for them?
For instance, people who underwent treatment are saying that they walked, shopped, flew on airplanes, went to restaurants, soaked in hot tubs, or read novels while undergoing treatment. Wow!!!
For many of us, doing any ONE of those activities would send us straight to bed.
Please continue to keep us posted and to let us know when you have questions, and whether they are answered; also, we like hearing when you notice improvements (such as your leg swelling -- has it sstayed down?)
And thanks to the other users of this treatment for keeping us informed as well. Posts: 1173 | From USA | Registered: Nov 2007
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posted
I think many people will continue to be disappointed by this therapy if they expect a cure. For those us that have gotten to the point where we need a therapy like this, there will not be a magic bullet. At least not that I can imagine. For there to be a magic bullet, you need to have the right combination of detoxification genetics, methylation cycle genetics-- in which case antibiotics alone just might do it.
But we are not so lucky. We are here because we don't have the right combination, and in the process there are many vicious cycles in our body to attend to and reverse. Most of us have major emotional traumas, some physical traumas that just add to the overall body burden when you can't detoxify toxins and bugs.
However, I have a suspicion that with time, biophoton therapy will be one therapy that can be a jack of all trades. It can do so many things: reverse allergies to allergens, foods, pathogens, resolve emotional disturbances, help the body fight pathogens, reverse hormonal deficiencies, detoxify, and even help restore imbalances in the invisible (to naked eye) biophoton field that surrounds the visible body.
Of course, for us to reap these benefits now, we need to be very proactive in finding out what our body needs on a weekly if not daily basis. It is very very easy to think we're not overtreating when in fact our organs are already overloaded without manifesting any signs of such. That is what has happened to me on so many occasions. But when I know exactly what I need to treat and what my body can handle, I feel like I'm in utter control of my body's healing and destiny. I suspect there are others that are farther along with energetic treatment that feel the same way.
Mary--I hope you keep a positive attitude regardless of where you're at by the end of your trip. This is a great big first step you are taking to heal. Just realize that our journey isn't all about killing lyme.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
And I wanted to add: I am certainly not one of the patients that could do much more than walk for 10-15 min a day when I was in Germany. Scott, Six, and Paul can all attest to this. i've outlined my progress very meticulously in my blog. Of course, maybe a little too meticulously (I tend to be on the verbose side) which may make the trends hard to catch. But I suspect no one that is truly curious about this therapy and has taken the time to read my blog can say I've left many stones unturned and haven't made a ton of progress in the last 9 months, much due to photon therapy
Posts: 713 | From Los Angeles | Registered: Oct 2007
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sixgoofykids
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posted
I can vouch for mOjoey, he was in rough shape when he arrived in Germany.
Cottonbrain, I am hoping you did not intend to imply the rest of us were dishonest .... I am working on the assumption that is not what you meant.
I spent two days in bed after the flight over there except to go get something to eat and go to the grocery .... and the doctor .... only stuff that had to be done. Yes, I read books because I was lying in bed most of the day. By the last week, I wasn't reading at all because I was busy most of the time.
By the time Joey got there, I was highly functioning and only found the baths my last week there, so only got to go one time. I saw drastic improvement after the fourth treatment.
I, too, blogged and kept meticulous records of exactly how I felt all along.
When Dr. W tested me for Lyme with is Bicom 2000 he was very surprised how poorly I tested and was of the opinion that I have had Lyme for a very long time. My reading only went up to about 10-15 when it should have been at 70-80, which is where it was when I left. So, even though I had had long term abx, Lyme was still a major stress on my body.
So, it's not just highly functioning people doing well with this treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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cottonbrain
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posted
Hey Six, in no way was I implying that anyone was being dishonest. On the contrary, I think it is great hearing from ALL of you on your treatment.
I said, "I really wonder if many of the people who report success with the treatment have started out at a higher functioning level than you, and thus it is easier to mop up the remaining infections for them?"
That's what I meant, and I'm appreciative of your explaining what your situation was.
Mojoey, lots of us can't read through the blogs that you and others have so painstakingly put together. We just skim on good days. So thanks for letting us know.
You are all doing us a service by reporting on your outcomes, and I don't think anyone here would disagree, especially me. Posts: 1173 | From USA | Registered: Nov 2007
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sixgoofykids
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It wasn't only that statement alone ... it was almost the whole post that made the implication .... it's hard to know what people mean since so much of our normal communication is through body language .... that's why I always assume the best.
I was only high functioning on heavy medication. Once off heavy meds, I would crash, which is where I was when I went to Germany. I believe the only reason I could get there myself was due to adrenaline the day I went over.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Dr. W. said when he tested me on the Bicom 2000 that I had Lyme over 20 years and that 80% of my energy was taken by Lyme. I have had all kinds of horrendous symptoms in the past such as non stop panic attacks, anxiety and insomnia that left me un-able to work or function to my most recent issues of lots of fatigue and lack of stamina along with ADD poor concentration and low thyroid just to name a few. I also had before Germany active EBV and CFS.
Flying makes me very ill and I arrived in Frankfurt in bad shape with a bad headache and I was feeling very nauseous. I felt like I needed oxygen on the flight yet did not ask for any. There was a child having seizures on our flight and I did not want to add my problems to the problems already going on. On the 11 hour flight home I did fine.
I do think looking back on it that the photon treatment did give me added energy and perhaps the thyroid Rx I started while I was there did so as well. The thyroid Rx though is not the fast acting kind of thyroid medicine so I am not sure if it helped or not or is even helping yet. For some reason today I am feeling rather low energy and that could be due to other variables such as jet lag or possible mold.
The further I was along in my treatment in Germany looking back on it the more energy I had. I had not been on any medication for well over a year before treating in Germany. I was taking some Buhner herbs until two weeks or so before leaving for Germany. Dr. W. advised me to treat again in one month after returning home and to try not to take a lot of supplements.
Normally shopping wears me out and in Germany it started to after too many hours spent trying on clothes. Floating in mineral pools sometimes gives me herx like symptoms the next day but in Germany it made me perhaps more tired the next day but seemed to be a good aid for me for relaxation and detoxing.
Posts: 42 | From the woods | Registered: Jul 2009
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seekhelp
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posted
Is Dr. W using ART testing or simply hooking people up to a machine to give him all the answers? If one had access to a Bionic 880 and his diagnosis machine, along with IV supplements, could one do the treatment in the U.S.
I didn't realize much of the treatment while in Germany is self-administered by the patient. Very unusual. What if one has a severe herx reaction? Does he have a medical staff trained for emergency situations? Hospitals nearby? Under a universal health care system, wouldn't a U.S. resident be in HUGE trouble overseas since not entitled to emergency care if your domestic health plan doesn't provide International travel health coverage?
I guess I think about too much. lol. Mary, I hope the next two treatments help you turn the corner and make huge leaps in your health. Thanks ao much for the informative, detailed account. It's interesting to read.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymewreck36
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posted
Lupus crash!!!!
Either the plaquenil is not out of my system, and it WAS causing THE lupus....so the "photo" of the bionic 880 is causing a flare. You see, light can cause lupus flare ups. So if the lupus was caused by plaquenil, and I am receiving "light" therapy, and the plaquenil is still in my system, then bionic 880 can cause a flare, even though Dr. W says it shouldn't.
OR
Quitting plaquenil allowed the lupus to ravage me out of control. It has been three weeks off plaquenil tomorrow. Plaquenil is also the first line treatment of lupus. I know...confusing...me too.
Lord help me. Last night was tortuous night sweats and lupus pain....abdominal, lymph nodes from hell, vision blurred out, dizziness I can hardly stand....pain all over, especially low back, just horrible pain...crippling. Lungs are sore when I breath in and out, even my heart feels sore, if that is possible.
I'm just crying today.
I took plaquenil this morning. If the pain gets WORSE, then that was the wrong thing to do, and plaquenil is CAUSING the lupus and the photos of bionic 880 are causing a flare. It takes severl months to get plaquenil completely our of your system.
If the plaquenil makes the lupus flare calm down, then definitely I can't drop it. Must stay on it.
Some people just suffer until they die.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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CherylSue
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posted
I'm so sorry to hear your latest travail. God hear your prayer and get relief soon!
Hugs, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
seekhelp, there were some stories in the old long Bionic 800 thread about people who wrote that Dr. W is a very good clinician. One person happened to get an acute apppendicitis attack, and Dr. W. has excellent connections to the hospital and she got the appendix removed (and afterwards tested negative for borrelia...).
lymewreck36
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Member # 4395
posted
Thanks CherylSue and Northernlights.
I have started to plow through reading that old thread. Getting some good information in there. I read through the appendicitis episode last night! Wow. The body is such an amazing mystery.
Thanks for replying. Everything helps. Sometimes just not being alone helps.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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bejoy
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posted
Mary, I am so sorry about how difficult this is for you right now. I'm sorry about the pain.
Some suggestions for you if you have someone you can consult with about these ideas:
Can you get a glutathione IV to help you detox?
Can you get some drainage homeopathics to help your liver and spleen? The location of abdominal pain and the swollen lymph sounds like your drainage systems are not functioning well.
In the US I use DesBio homeopathic Systemic Drainage. In Switzerland I understand the Heel products are very good, although I am not so familiar.
Are you taking some form of adrenal support? It sounds to me like your adrenals are overtaxed, and your cortisol levels very well might be very low.
There are some very good herbal and nutritional supplements to support adrenals. I have seen some people sucessfully support cortisol levels with homeopathic cortisol as well.
If you have someone who can do energy testing you can have them test your body's response to Plaquenil. It is possible that you might also benefit from a homeopathic preparation of Plaquenil if your body needs to detox from it.
Mary, this is a temporary set back. Your body is working hard to clear the pathogens and toxins. You will get through this.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Mary, I'm sorry you are having such a rotten time. Please know we understand how bad you feel, even when your family doesn't quite get it. How could they, really? They haven't experienced it. Hang in there! I hope you feel better soon. Please keep us updated.
Posts: 57 | From western Virginia | Registered: Apr 2009
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btmb03
Unregistered
posted
Cottonbrain, I too have asked the very same questions related to people's functioning levels...sightseeing, shopping, eating out, renting bicycles, etc- this controversy was covered in previous threads where (my brain fails me) someone who went to Germany had posted that they were functioning at around 90% prior to the trip.
I think it is good to ask these questions. I don't think anyone is implying anything, just seeking clarification.
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sixgoofykids
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posted
One thing to remember is, when you go for this treatment, you are there for three weeks. Many of us feel a lot better, though not well, by that third week. Also, by the nature of Lyme we have good days and bad. Plus, remember that we are sightseeing with other Lymies, so there are times for breaks.
The walk to eat out in Dobel is not far and is a lot easier than shopping and cooking for yourself.
So, you're hearing about the times we go out an do something over a period of three weeks. If I had felt good the whole trip, I would have done significantly more. For most of us, the vast majority of the trip was merely doing essentials.
I know Joey rented bicycles, but when I saw him his first week there and my last, he didn't look in any shape to be riding a bike .... he was generally seen either sitting or leaning against a wall when he was out of his apartment. We all spent many hours sitting in our jammies in the hall of the guesthouse visiting.
The couple week prior to going, I was mostly bed/couch bound due to having stopped meds a few weeks before.
Scott was highly functioning when he arrived, thankfully, because it was my last week and I got to spend a day with him traveling in France .... a highlight of my trip!
My two traveling partners were in about the same shape as I was (one was probably a little worse). Let's face it, who would bother to go over there if they were essentially healthy? Except for Scott, the rest of us were very typical chronic Lymies. And no one can fault Scott for wanting more than 90% .... I know I wanted more.
One year ago this month I was just starting back on Mepron/Zith/art/plaquenil/cedax and was having a tough time. I was discussing with my dad the financing of the Germany trip. Next month will be the one year anniversary for me of stopping the abx. I can't believe so much has changed in one year. I am not a person who just got a little better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymewreck36
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posted
I folks. I have to agree, finding it hard to rest things on "faith" the way I do, that this treatment DOES do something for the lyme.
Who would have thought? Not me.
And yes, I am living in hell tonight with pain, but I don't know if it is lupus, left over plaquenil causing drug induced lupus to flare, or if I am having a HUGE detox reaction causing my immune system to get cross wired..as it has been in the past few months.
But I DO know that something has happened to some of my LYME symptoms....numbness for example, and anxiety for example....to make these things get better.
I am really a mess, but in my own mind and body, I know that that little photon machine is doing something......something....I am not sure what. But it is doing something.
I sent a quick email to Dr. W. about my situation. I'll get my husband to phone his office tomorrow to explain that I need to see him at my next photon appointment on Tuesday.
On the subject of being active while being sick....I have to say that I have dragged myself all over Switzerland with pain killers and leaning on my husband's shoulder or arm because I don't want to live here and miss anything. Then I have a good cry and spend the next few days in bed.
IT is so beautiful in Switzerland. It reminds me that I am alive even if I don't feel like it sometimes. So I go.
I can understand visiting a foreign country, sick as a dog, and making myself go out to see it.
But when I am home, I am completely bed ridden, or sofa ridden.
One life....once chance to do it....and it's over.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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posted
I rented bikes because my main symptoms were fatigue related and not pain. In fact I've never had any pain...but Six actually portrayed my disability pretty well (thanks Six!). I rented bikes because I wanted to be able to do a little sightseeing...who knew when I'd be able to go back to Germany again, and biking on flat roads allowed me to cover more ground. It sounds way more intensive than it is. Being able to rent bikes at city centers was really a godsend for my orthostatic intolerance & fatigue. I suggest others that have similar symptoms to consider doing this too.
Also, I second Six's comment about eating out near or in Dobel. There's a place with pictures of its menu items out in front that I ate at every few days. I actually found Germany food to be really healthy (surprisingly), probably because I'm on the paleo diet. There are less additives in everything, so you're basically getting lots of meat if you take out the potatoes. There are also a lot of turkish/mediterranean places in the shopping mall near Dr. W's office. I pretty much eat Mexican food back home every time I go out, so those Turkish gyro wraps was the closest I could get to yeast-free, gluten-free, sugar-free, dairy-free (if you replace yogurt sauce with chili peppers--yum!). I actually we had more gyro places back home!! There's also a Greek restaurant called Dionysus (I think) on the way to Bad Herrenalb. Very healthy.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
For me some the activities I did in Germany helped me rather than wore me out. I was able to walk further as treatment went on so I often walked for exercise which I found relaxing and enjoyable. I also think when people are healthy enough to do some exercise it helps clear the lymph so improves you ability to detox.
The owner of the guest house Karin Klein is super and will take people walking through the Black Forest with her if she knows you like to walk. If you are afraid of ticks there are other walks you can take that are beautiful as well without going on a dirt trail.
One nice walk was down to the horse farm on a paved driveway. It starts where the T-Mobil phone booth is on the way into Dobel across the street from the guest house. I did that one with a friend after 1:00 pm on my last night in Dobel and it was wonderful. The walk past the horse farm to the right is super nice too. I did that same walk on the full moon and kept my eye on the beautiful pink orange moon above a valley and field below.
Walking into Dobel for dinner and back was a nice short walk.
For me floating in mineral pools was very nurturing and relaxing and they do help you detox while putting minerals into your body. If that is an activity one is able to do I highly recommend it. After soaking and floating I some other members of the guest house always slept much better.
I did not do any hardcore clothes shopping until my last day before I left Germany and I was feeling better by then. That kind of shopping before I left for Germany would have never happened or if it did I would have been fatigued and lying around for two days after that completely worn out.
Everyone is different and has different levels of energy before and after treatment.
Posts: 42 | From the woods | Registered: Jul 2009
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lymewreck36
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posted
I wanted to let folks in here know that I sent an email to Dr. W. last night with specifics of what I am going through, my questions about it being a lupus flare, or detox overload, etc. I told him I was scared and that my pain was so bad I was having "pain nightmares."
I dreamed night before last that I had a rope tied around my waist, and it was being pulled so tightly it was cutting me in half and flesh was breaking open.
When I woke up I realized it was the severe abdominal pain that made me dream that.
Anyway, this morning I am here drinking my coffee at 6:30 a.m. and I have a reply from Dr. W.
He says he feels it is a deep detox reaction and recommended a high raw vegee meal plan. He won't be in the office tomorrow for my appointment because it is his wife's birthday, but he said he would leave a "plan" for me, and we would talk on Friday.
How many doctor's answer your emails like that ?!
I feel a little better in some ways this morning, but I did take two plaquenil yesterday out of desperation and not knowing what the heck to do to survive the day. Don't know what part that played in feeling better today.
But by last night, I had kidney pain, which I have never had before in my life. Now I know what people mean when they say they have kidney pain. No mistaking it.
I see my rheumatologist this morning to go over blood work I had drawn last Monday.
Bionic 880 appointment tomorrow.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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lymewreck36
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Hey, sixgoofy.....I was just reading through some of your blog again and noticed we have something in common...
We're both Catholic girls that play flute in the choir!
Well, for me,,,,the flute thing has been on the back burner for some time,..but the first half of my life was flute, flute, flute, and my DAd was the choir director organist for our church for 28 years. Dad is a retired music professor.
He's retired now, as my flute playing has been for a while since I have been sick, but....I still think of myself as the flute player.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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sixgoofykids
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posted
Hi Mary! That's fun! I played from 5th grade through high school, then didn't play at all for 23 years. Picked it up several years ago. I was unable to go to choir practice when I was ill, but they understood and let me play anyway. Some days I was sitting on the stool (normally stand) and leaning my head against the organ between songs, but I refused to quit. Some days I'd only last half a Mass then would go sit with my family.
I hope you see the results I did with this treatment. It was a big piece of the puzzle for me.
I found the flute playing always made me feel better. I couldn't think about being sick, and it helped my breathing. It always put me in a good mood. Maybe you need to dust yours off and do some playing again!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymewreck36
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posted
I have some good news for everyone...but first I must address sixgoofy and the flute thing....
You know....I have always thought that a lot of my adult depression has been from being disconnected from those things that are part of my soul. Like music, and teaching......
I was All-State for four years...played in the Montgomery symphony my senior year in High School, and started college on a music scholarship...but dropped the scholarship to change my major.
But as a busy mom and sick adult, I have been separated from that part of me that makes my soul sing. And teaching is the same thing...
Teaching literature and writing is so personal, and you get into kids lives, and they talk to you, and you realize you are shaping their minds....I miss them so terribly...And I was so good at it...I felt the bond with my students, and they did with me.
O.K. enough blah, blah, blah......
I went to my new rheumatologist (didn't have a swiss doctor until now), and we went over my blood work which was drawn last week Monday.
My cholesterol, my blood sugar (with two metformin a day) are all normal. This is very good for someone overweight like myself.
But here is the biggest news.....(roll on a drum please)
My Lupus blood work is all negative. There is no trace of it.
Of course, I was not is this huge flare one week ago when the blood was drawn, but the doctor said it would not flip flop that fast.
I told her my story of the flare I am having and she said it sounded to her like a healing crisis.
This is what I have been going through. After my first treatment, I noticed the swelling in my legs miraculously went down to normal. AFter my second treatment, I started having this fatigue that got me crying it was so debilitating.
Then, I was cruising into my third treatment, but started, right between my second and third treatment, feeling pain from hell crawling into my body. I remember sitting last week Thrusday getting my hair done, and during the time of sitting in the chair and exiting the salon, I went so far down hill I was afraid I wouldn't get home.
Then Friday came and I had my third bionic treatment. Friday night was more crying because I was in so much pain, and by Saturday, when my family went to a renaissance festival in a Middle Ages village in Northern Switzerland, I was screaming bloody murder inside.
I got home Saturday night and had crying fits of anguish because of the pain. My vision blurred out, my head was throbbing, I had to sit on all fours and rock back and forth because of stomach pain, was sweating...
I started to shake and shutter like I was freezing cold, but I was sweating, and I had that pain dream that night that my body was being cut in half by a large, rugged rope being tightened.
On Sunday morning.... my lymph nodes were so swollen in my groin area that I couldn't even walk. Just trying to shuffle a few things on my desk made me shake and tremble all over from the effort. I continued to shake and tremble....and rock back and forth with pain.....but I took my advil and detox herbs and drank green tea all day.
This morning, Monday morning, I felt a huge difference from Sunday morning....likes it is backing off slowly. I realized that whatever was causing the explosion had climaxed on Sunday, and I was walking out of it.
I emailed Dr. W. last night and he said I should eat raw foods all day, no dairy, and little meat, and finally, no pork. Funny that pork thing. I'll have to ask him about that.
Tonight I need advil again. I've been drinking water and green tea, and hope for a more restful night tonight.
Tomorrow is my next bionic treatment...I treat on Tuesdays and Fridays....and I am scared to death to point that thing at my body. It is really stirring the pot. I am in SHOCK!!!!
But I know I have to do this....Dr. W. is now aware of what is happening and he said he would have a "plan" for me tomorrow. Anxious to see what that is.
So, I have to say folks, that even though I am feeling like garbage, I feel more positive tonight, like maybe I will have better days ahead.
That is my news for tonight. Thanks to all of you that PM me or write in this thread. Every single email I read over and over, and meditate on. You are all terrific people.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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posted
Mary I am sure when the MD says he has a plan for you he does. He is very good at figuring out what to do for each of his different patients health issues. I watched him work on Ms. Florida's head and gum problems one day with acupuncture and a chiropractic adjustment. You are in good hands and are so lucky to be treating there. He helped another person with their headaches with an adjustment while I was still in Germany.
You might even run into Ms. Florida on Friday because that is one of her treating days too. She is still there until the doctor leaves on vacation. She told me she met you.
Enjoy the rest of your treatment. I have a feeling the worst of your herxing might be over and soon you will be feeling good. I still am and hope you will be soon too. It will all be worth it when you are.
Posts: 42 | From the woods | Registered: Jul 2009
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lymewreck36
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I'm sure he has a plan. I'm excited today. I'm having my morning coffee and getting ready to hit the road. I'll post tonight about how it went today.
So nice not to take antibiotics.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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Mary I am glad you are getting excited. That is a good place to be mentally. Have a good treatment today.
Posts: 42 | From the woods | Registered: Jul 2009
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Truthfinder
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posted
As I write this, you are probably back 'home' or on your way there..... can't wait for a report.
I hope you did remember to ask about the pork thing..... I've heard that before....
Mary, has your 'Lupus blood work' ever been negative before?
Also, if you think of it, could you list what tests were considered in your "Lupus blood work' by your new Swiss rheumy? (I'd be interested to know what tests are being looked at.)
Keeping my fingers crossed for ya....
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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lymie_in_md
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Great news Mary.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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lymewreck36
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posted
Thanks for all the replies guys. Yes, I am getting excited,....but afraid to at the same time.
But just the thought that there might be a non invasive treatment with no negative side effects, that will make me functional....is so exciting.
I still have miles to go, but I've made progress with the crazy beam of light.
O.K. So you know I am back home. Funny thing is that Dr. W. did not leave any notes or any "plan" in my file for the nurses to give to me or talk about to me.
You know he was not in the office today becuase it is his wife's birthday.
So he either got too busy and forgot, or just intends to discuss with me on Friday. That being the case, I did not get to ask him about the pork thing.
I got to the office. Horrible traffic today so my daughter and I were quite frustrated by the time we got there.
WE went behind the curtain for my treatment and sat there and giggled quietly for the entire hour. Then the I.V. Then back on the highway. Oh yes, my daughter is very excited because there is a SUBWAY sandwich place we have made a habit of stopping at before driving home.
So that is my news for the treatment. On the subject of the pain and fatigue I have been dealing with, it has been getting steadily better since the fallout on Sunday morning. So I am even better today than yesterday. But still very weak and tired.
About Lupus.....my first clue to the diagnosis was a very positive ANA. I have been having an ANA run every six months because it has been suspicious over the years, but never had a positive lupus "panel" before.
It was this winter that I started having the "lupus" symptoms, and it was my llmd appointment at Easter this year that the blood panel became positive for lupus. In that panel, my "Single Stranded DNA" was positive, but not the "Double STranded DNA."
Then I looked online under lupus testing because I did not have a rheumy yet, and found that drug-induced lupus usually has the single stranded DNA positive, but not the double stranded DNA.
This was hopeful for me in some ways. That meant that by finding the right medication to drop, I could side step that bullet. But.... that made the lyme/babesia situation more of a nightmare.
And as time wore on, it turned out that ANY medication caused a "lupus" flare. Only one medication I had NOT tried to drop, and that was plaquenil.
Finally I got a sinus infection and needed to take a z-pack. I had found ONE place on the net that said plaquenil could cause drug induced lupus. So I dropped the plaquenil with great trepidation, and took the z-pack.
Much to my surprise, the zithromax did not cause a flare!!! So I started to believe it was the plaquenil all along causing the nightmare. I've been on it for 7 years.
I have not, however, been able to resume taking an antimalarial other than artemisinin without a flare. I have to wonder if that is because the plaquenil is still in my system. It takes months to leave completely.
This is the place I was in when I started to see Dr. W in Germany and my rheumy in Switzerland.
I gave my rheumy my blood work with the positive lupus panels, and she said she could not tell me if my lupus was drug induced unless she had one other test, a histimine, or histone,....can't remember. So she did another complete panel with this one other test added in.
You would think I would know what that one other test was, since I am so relieved it came back negative.
So I went to her office yesterday morning to go over the blood work results. It has been 9 weeks off antibiotics, minus the z-pack I took, and 2 weeks off plaqauenil when the blood was drawn.
So, she told me my lupus blood panels were completely negative,....every one of them. She said there was no sign of me having a positive result.
We can guess that my earlier positive tests were "drug induced" which is what we did, but there is no sure cause and effect that the doctor can determine from information she has in a test.
My plan now is to continue following instructions from Dr. W. I have one more treatment to complete the five, but I am going to ask for two more next week, and then I leave for my "home leave" to the U.S. for three weeks.
AFter that, I want to begin treating babesia and/or continuing lyme treatments if that is what I still test positive for.
It would be interesting for me to know how many of you that have gone to Germany tested positive after the first five treatments and needed more treatments.
Now I must go and be with my family. I'm very tired as you all could imagine.
I'll post tomorrow about what reactions I had to today's treatment.
Take care all of you, Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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SForsgren
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posted
I've done about 75 total treatments now with the Bionic and Borrelia still comes up in energetic testing if I don't treat for it again from time to time. Not all treatments were for Borrelia but I do a Borrelia treatment when it tests as needed.
It seems that many people that have done the Bionic still later test for Borrelia and have to treat again at some point, but it seems to at least allow you to manage the infections without antibiotics in some cases like mine.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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seekhelp
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posted
Wow, 75 treatments. Unbelievable. THis organism could survive a nuclear holocaust probably. Outside of energy testing, how about it showing up in real blood work? Have you tried to test Scott?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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SForsgren
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What conventional testing would you trust to tell you it was gone? I've not come across such a test.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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This is my guess about the pork: It is a very hard meat to digest and sometimes causes me to have boils or seems to bother my liver because when I eat too much of it the mucus in my nose turns yellow green which I believe in homeopathy means a sluggish liver with liver congestion issues. I think pork can be hard on a herxing body to deal with and sort of a toxic meat to eat.
Regarding this question:
"This is something I wanted to comment on. I have to wonder how the doctor can interpret how your treatment is doing when he doesn't talk to you at appointments. There is the consult before you begin treatment, with little note taking. Most of what the doctor bases his perception of your condition on is what his machine tells him."
Mary not that you are getting ozone but for those who are:
Regarding the ozone blood infusions, the medical techs who give you the ozone treatment make notes in your chart about the color of your blood each time. Mine was darkish to start with and was still dark when I left but one of the techs told me it was getting lighter compared to when I first arrived. Lighter is better than too dark and a healthy sign. The doctor I assume reads the notes in the chart that the medical techs make.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I still tested slightly positive after the five treatments and he told me to treat three more times. I treated the Lyme monthly after that and as of the last ART testing was still negative for borrelia.
As I treated coinfections, I would sometimes feel the need to treat Lyme .... it seemed that treating the other infections would cause it to come out, but that's only a guess based on symptoms.
I'm down to insomnia as my last symptom. It's not bad, but I sleep very lightly. Could be hormonal due to being sick for so long.
Pork is a "dirty" meat. Scripturally, the Jews were not allowed to eat it .... Kosher delis don't have it .... it was considered unclean. (I ate lots of pork in Germany, LOL).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Marnie
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posted
Dr. Valletta (Italian) has a U.S. patent titled: Magnesium for Autoimmune.
He used Mg pyrophosphate and sub(lingual) B6 to cure RA, ulcerative colitis and invasive cancer in months.
What is pyrophosphate?
PPi
How do we make it?
First...please go to this website that shows you (an animation) what is happening:
Scroll down a little and watch for the blue box on the left side.
You may have to use your computer tools to make that bright blue box bigger.
The word, ``Photon'' will appear in white as the animation goes on. A photon is pure energy with no "charge".
In the middle you will see the G-helper protein called ``transducin'' appear.
Notice what happens to the Na-Ca channel on the right.
It closes.
Now...Bb needs Na and Ca to go in and then OUT of the cell.
The "door" closes. Na and Ca are sorta "stuck" in the cell it appears.
See it happen in the animation? Look closely.
Does Bb like it if Na is "stuck" in the cell?
"The causative agent of Lyme disease, Borrelia burgdorferi, for example, encodes a vacuolar-type ATPase that is very similar to the one from T. pallidum and also contains a typical Na+-binding motif (data not shown).
Remarkably, the genome of B. burgdorferi does not encode any (known) primary H+ or Na+ pump,
except for
two NQR subunits, NqrA and NqrB, fused into a single polypeptide chain (BB0072).
Therefore, it appears that this organism uses its Na+ ATPase for ATP hydrolysis and
depends on its two NhaC-type Na+/H+
***antiporters***
(BB0637 and BB0638) for the generation of proton motive force....
...In conclusion, the results of this work show that in spite of the importance of Na+ circulation for the membrane energetics of Vibrio cholerae
and related microorganisms,
these organisms still rely on the proton motive force for oxidative phosphorylation."
Bb has an *antiporter* for Na. Logic would say, it would not like it if Na was "stuck" in the cell.
Note: ATPases cause ATP -> ADP + phosphate + energy is released.
***When GTP is high*** (animation shows this) and the Na-Ca channel closes...
then Mg helps GTP -> cGMP and PPi.
There's the pyrophosphate. Now can
ADP-> ATP?
Remember Bb looks to trigger ATP-> ADP.
Remember the patent? Mg pyrophosphate and sub(lingual) B6...
Why sublingual?
Because our stomach acids will destroy most of it unless it is in your IV.
Is it in your IV?
Why are they not using adefovir to counter edema factor?
Or do they expect/want edema factor to happen?
"EF, which is referred to as edema toxin once inside the cell, is an adenylate cyclase, an enzyme, which catalyzes the conversion of ATP to cyclic AMP (cAMP).
(My note ATP-> ADP + cAMP, Bb's Na-ATPase?)
Because cAMP is an important regulatory molecule in the cell, production of more cAMP by edema toxin disrupts normal cell function.
One of these functions of cAMP in the cell is to maintain proper osmotic pressure by regulating the flow of small ions and water in and out of the cell.
An increase in the amount of cAMP causes the cell to swell. Additionally, since edema toxin uses ATP to form cAMP, the cell becomes
depleted of ATP.
Macrophages need the energy-rich ATP in order to engulf and destroy bacteria. As a result, infected macrophages become bloated and
useless."
"The lethal factor, or lethal toxin, disrupts normal cell function by another route.
Lethal toxin is a zinc protease that targets members of the mitogen-activated protein kinase kinase (MAPKK) family.
This leads to inhibition of several cell signaling pathways and results in an increased amount of cytokines, protein that act as cell mediators.
While the exact role these cytokines play in causing cell lysis remains unknown, it is believed that high cytokine levels cause
an increase in harmful oxidative molecules.
If the concentration of these harmful molecules gets too high within the cell, the macrophage ruptures and dies."
Okay...so we're trying to kill off the infected damaged defense cells to get "at" Bb?
OR is Bb "dead" because we have disrupted Bb's Na "antiporter" (closing the doors on the Na-Ca channel)?
And once Bb is dead, the edema toxin is released into the macrophages causing them to swell and become depleted of ATP...and eventually die also?
What if Bb isn't knocked off, but only the defense cell IS destroyed?
Then does giving IV Mg support our OWN antibodies (esp. IgG) to finally be able to destroy Bb?
"Characterization of the physiological requirements for the bactericidal effects of a monoclonal antibody to OspB of Borrelia burgdorferi by confocal microscopy.
The bactericidal effect of Fab-CB2 is not dependent on the induction of spirochetal proteases but is dependent on the presence of Ca2+ and Mg2+.
Supplementation of Ca2(+)- and Mg2(+)-free medium with these cations restored the bactericidal effects of Fab-CB2.
The mechanism by which a Fab fragment of an antibody destroys a bacterium directly may represent a novel form of antibody-organism interaction."
PMID: 9125579
A ``novel form of antibody-organism interaction?'' I don't THINK so!
E. Required by immunological process. Magnesium, immunity, and allergy: Mg is required for several steps of immunological reactions
1. Lymphoblastic transformation, a prerequisite of secretion of antibodies by lymphoblasts, requires Ca2+ and Mg2+
2. Mg is required for synthesis of proteins, immunoglobulins included
3. Antibody-induced complement activation is Mg dependent
4. The antigen-immunoglobulin-complement reaction induces degranulation of the mastocyte
Why do so many cancer medical abstracts suggest the SAME nutrients can help fight various cancers (which can indeed be triggered by pathogens and/or too much oxidative stress):
Vitamin C, green tea extract, lysine, arginine, and proline?
Have you been told to keep taking a lot of probiotics? I think it is vital.
Don't expect an "overnight" cure. It takes time.
As Bb is destroyed and the defense cells are also destroyed, this releases a lot of proteins that must be broken down and NH3 (ammonia) "happens". This is toxic.
It appears ACZ Zeolite (oral spray, nano particles) can help with NH3 (binds it and removes it via the urinary system) and heavy metals too.
Too much die-off too fast is not good. It can lead to sepsis.
Our body can only handle so much "debris" just so fast.
The turtle wins.
You WILL get better slowly...and safely.
P.S. Edema can be caused by hyponatremia. Low blood level of sodium, but hyperlipidemia, *hyperproteinemia*, and hyperglycemia may cause a pseudo-hyponatremia.
Maybe why the doc suggested raw veggie diet? (No additional protein.)
Curious, but
"These data demonstrate that increased serum viscosity occurs following IVIG therapy due to hyperproteinemia, and the rare hyponatremia reported is a pseudohyponatremia also due to hyperproteinemia."
PMID: 12749010
[ 07-15-2009, 02:02 AM: Message edited by: Marnie ]
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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lymewreck36
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Member # 4395
posted
God bless you Marnie, but could you put all of that in some kind of paraphrase of layman's terms for us literature students?
By the way Marnie, and others....
My rheumy said my B-12 level is way too high and to stop supplementing it. She tested for it when she did my blood work.
I asked her if there was some kind of B-12 toxicity, but she just repeated that it was WAY too high and I needed to drop the supplementation, which for me in weekly B-12 shots.
What do you think? Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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Marnie
Frequent Contributor (5K+ posts)
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posted
Increased vitamin B12 levels are uncommon. Usually excess vitamin B12 is removed in the urine.
Very occasionally have instances been found of excess of vitamin B12 or cobalamin in the blood level beyond the recommended limit.
This phenomenon is generally ascribed to excessive supplementation by consumption of energy drinks fortified with cobalamin, oral supplements or intramuscular injections.
However, there are occasions when extreme levels of vitamin B12 are noticed which arise apparently from unexplained natural causes.
In the absence of any proven reason it is assumed that this is the result of a malfunctioning metabolic process.
It is believed that vitamin B12 has a very low ability to become toxic. According to the Institute of Medicine, `no adverse effects have been associated with excess vitamin B12 intake from food and supplements'. Because of the lack of adverse effects, no serious studies have been conducted in cases of excessive vitamin B12.
Methionine is essential for choline synthesis; therefore, vitamin B12 plays a secondary role in this lipid pathway. A choline deficiency that causes fatty liver can be
prevented by cobalamin
or the other methyl donors (betaine, methionine, folic acid).
(One of Bb's Osps (outer surface proteins) is phosphatidylcholine.)
Do you take a daily supplement ALSO like Centrum, for example?
Some drugs you are on and even some tests you had done (using dyes) may have thrown off the test for your B12 level.
How are your liver enzymes? Been checked recently?
How are your electrolyte levels?
WBC, platelet levels okay?
"Vitamin B12 is stored in the liver for a year or more, which reduces a person's risk of anemia."
"Vitamin B12 functions as a methyl donor and works with folic acid in the synthesis of DNA and red blood cells and is vitally important in maintaining the health of the insulation sheath (myelin sheath) that surrounds nerve cells.
The classical vitamin B12 deficiency disease is pernicious anaemia, a serious disease characterized by large, immature red blood cells. It is now clear though, that a vitamin B12 deficiency can have serious consequences long before anaemia is evident.
The normal blood level of vitamin B12 ranges between 200 and 600 picogram/milliliter (148-443 picomol/liter).
Although deficiency is far more common than excess when it comes to vitamin B12 status cases have been reported where blood levels exceeded 3000 picograms/milliliter.
Such high levels may be caused by ***bacterial overgrowth*** as outlined in the article Vitamin B-12 Overload.
The link to B12 overload as a result of bowel bacterial overgrowth is here:
"High levels of vitamin B12 can occur in liver disease (such as cirrhosis or hepatitis) and some types of leukemia. But the vitamin B12 test is not usually used to diagnose these problems.
In rare cases, high levels may be found in people with diabetes or who are obese."
"High Vitamin B12 Levels May be Linked to Better Treatment Outcome for Major Depressive Disorder"
High levels Of B12 can also be linked to Polycythemia vera - a disorder of the bone marrow. It causes too much production of white blood cells, red blood cells, and platelets.
High levels of B12 actually ***lowers homocysteine***.
A good thing because high homocysteine levels (not good) do this:
You may have high levels of homocysteine when cholesterol, white blood cells, calcium, and other substances (plaque) build up in your blood vessels.
This buildup may increase your chances of having a heart attack, stroke, and blood clots in the lungs (pulmonary embolism) or deep veins of the legs (deep venous thrombosis)."
It is likely you simply need to stop additional B12 supplements to bring it back closer to normal range.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
Some people need weekly b12 shots no matter the level. I have seen it mentioned in cfs forums.
Posts: 366 | From Europe | Registered: Nov 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My latest B-12 lab showed pretty excessive amounts and I only supplement orally (normal - up to 840, mine was 1,650+).
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
My levels of Vit B12 are also too high and I also only supplement orally. But my Methylmalonic Acid is increased which indicates that I have a Vit B12 deficiency.
As I am informed one can have too much Vit B12 in the blood but on cellular level one might still be deficient.
You might check your Methylmalonic Acid level.
Posts: 767 | From Germany | Registered: Feb 2004
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Truthfinder
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posted
Hey, thanks for the detailed explanation of your Lupus tests and panels, Mary. Much appreciated.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Hello everyone. Quick update.
Tuesday was my most recent treatment, and by that evening, around the time I posted a summary of the day, I felt the now familiar swelling of the lymph nodes, pain of all kinds, and swelling in my legs.
That whole reaction picture since a few days after I started bionic 880 started to return, and I was concerned about the next day, Wednesday, which I was to spend with our U.S. company playing host with my husband.
It is 90 degrees here, with no air conditioning anywhere, and sticky as hell. Just misery for someone with a sweat problem from lyme/babesia/overweight.....etc.
But, when I woke yesterday, I realized that crescendo of "reactive pain" from the treatment was not going to be as bad as last week, when I was balled up on the floor, ...so the decrease in reaction should be a sign of improvement?
So I ended up popping advil all day yesterday while we spent the day in medieval wine villages in the Alsace of France.
If it weren't for the temptation of Alsace and pottery and wine and linens and lace, I would have stayed in bed.
But the shopping part of my DNA kicked in that extra necessary adrenaline, and I was out the door.
To be true to my word and report what I am experiencing, I should tell you that when the explosive pain response started up last week after treatment #2 of bionic, the swelling in my legs came back in.
I can make educated cause and effect "guesses" as to why that is......
But I can't know for sure.
Being out in the heat, on my feet all day yesterday, sweating out the day in and out of stores while stuffing my pain levels below did not help the swelling.
So my company left today, and I"m trying to drink green tea and keep my feet up.
Tomorrow is my fifth treatment. I suspect I am not anywhere near "cured," so it will be interesting to report what kind of dialogue I end up having with Dr. W. tomorrow.
I'm still not taking any antibiotics, but I am still taking artemsinin.
That is today's report. Sorry I wasn't a better patient and I didn't stay in bed yesterday. It wouldn't have been very restful with this heat anyway.
I'm sitting in my recliner today with a fan blowing on me.
On hot days like yesterday and today, I take a cold shower before going to bed, and then put a floor fan on high and point it at the bed to try to sleep.
By the way, regarding my B-12 levels, and thank you all for your input, the rheumy in Switzerland did say that my red and white blood cells were in the normal range for the most part (red cells a little low but not a surprise with babesia).
She said my C-reative protein was 14, and my ESR was 30. I hope I remember that right.
Can somebody tell me what the ESR is, and how is that different from a C-Reactive Protein? Should I be concerned about these results?
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