posted
I am restarting ABX again in (1) week. My first attempt I came down with Morgellon's so my priority shifted to treating it.
I have been drinking a cactus juice supplement for over a year now and improved significantly. I have energy, can tolerate extreme heat, pain level is dramatically reduced, brain fog gone and my gait is very good despite bad knees.
I don't know anything about ART testing, proton therapy and all the protocols some of you are doing but I have a new MAS Rife and don't know exactly what it targets.
The few symptoms I have are neuropathy, sweats and arthritis. I am rethinking taking ABX after reading this thread. My Lyme doc said the cactus juice was controlling most of my inflammation but wasn't killing the bugs.
Posts: 245 | From Texas | Registered: Jul 2009
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Ellen101
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posted
I did antibiotics for a year. They helped some but caused alot of damage as well. When still having symptoms I was advised to continue with yet more antibiotic but felt it was time to move on.
Through testing I've discovered other issues that are at play which now makes me question my previous diagnosis ....
It is so important to seek out other testing and diagnostics as it can be easy to fall into the trap of blaming every symptom on lyme.
Posts: 1750 | From United States | Registered: Dec 2011
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Lymedin2010
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posted
It is very interesting to see the full gamut of experiences with ABX. There must be strains that are so resistant, that ABX simply don't cut it for some.
My last two LLMD's also mentioned that they are seeing more & more people who are trapped with chronic sickness and nothing seems to help them.
On a positive note, LLMD's are awesome & get it because they see this stuff day in and day out. I especially appreciate a LLMD, NP, or nurse that also has it and knows what it is to go through it. They seem more sensitive and understanding of what we have to go through.
I have a distaste for regular docs & out of the many that I have seen, there is only one that was educated enough to simply understand and try to help alleviate some pain.
Posts: 2094 | From NY | Registered: Oct 2011
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posted
dbpei...we must have the same bug(s). Same story here. Tried many things, but something has attacked my nervous system and will not turn it loose. BTW - I also did 11 months of IV....both targeted at Lyme and esp Bartonella. I look "good", I exercise and can live a relatively normal life, of which I am sooo thankful. However, I am packing these crazy symptoms along for the ride, all day, every day. Just my experience.
Posts: 566 | From West Coast | Registered: May 2008
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dbpei
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posted
I am sorry the IV ABX did not help you, tickssuck. PM being sent.
Posts: 2387 | From New England | Registered: Aug 2011
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sixgoofykids
Honored Contributor (10K+ posts)
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posted
quote:Originally posted by karawhite: Did Dr. H really have lyme disease? he does not say anything about it in the book....
Yes. When I was seeing him for treatment he told me he "used to have Lyme Disease".
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sixgoofykids
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posted
I agree with and want to reiterate what TF said: EXERCISE is essential, not optional.
I was so sick I needed help walking. I understand when you say you can't exercise. But you have to. Even at my sickest I lifted weights. It wasn't pretty, but I did it.
Then I switched over to Pilates. Pilates uses either body weight (mat exercises) or springs for resistance. It is a resistance program that incorporates breathing, strength and stretch. It's whole body every time. It fits what Dr. Burrascano says to do in his protocol.
Whatever program you choose, it must have strength and stretch. You try to go for an hour. Cardio is not enough, it's not doing the same thing for your body and in most Lyme patients it's actually counterproductive.
I, too, do nothing to stay healthy other than normal stuff .... I exercise, eat right, and get enough sleep. I've been well for over 4 years. Exercise was a big piece of the puzzle to reaching this level of wellness.
I did most of the other stuff mentioned, too. I chelated, treated parasites, detoxed, etc.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Abxnomore
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posted
I was happy to see a stack of Dr. H's new book on the New Arrival table at my local public library today!! Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
"I agree with and want to reiterate what TF said: EXERCISE is essential, not optional."
I don't agree with this for all cases. I kept trying to exercise for a long time and it would create horrendous crashes, even to the point of weakness where it felt like I could barely breathe (I am not talking about asthma).
Exercise clearly had a negative impact on me for at least a year. If you cannot heal fast enough, exercise is just damaging. There may be things that need to be corrected before exercise is possible. My 2¢
Posts: 922 | From Philadelphia | Registered: Sep 2012
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sixgoofykids
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posted
quote:Originally posted by VV: "I agree with and want to reiterate what TF said: EXERCISE is essential, not optional."
I don't agree with this for all cases. I kept trying to exercise for a long time and it would create horrendous crashes, even to the point of weakness where it felt like I could barely breathe (I am not talking about asthma).
Exercise clearly had a negative impact on me for at least a year. If you cannot heal fast enough, exercise is just damaging. There may be things that need to be corrected before exercise is possible. My 2¢
It varies for the person and for how they're doing at the time..
It's true that exercise oxygenates the blood and moves lymph, which moves toxins, so too much is counter-productive. Sitting and using small hand weights, or going for a short walk might be intense exercise for one person whereas a full gym workout might be appropriate for another person.
A person can't think of exercise in the traditional sense. It might not be a gym workout, but no one is going to get better being stagnant. Dr. Burrascano talks about the importance of movement in his guidelines and states that it should be appropriate for the person.
Neither TF nor I are saying to jump out of bed and workout like you're healthy. Do what's appropriate, but you have to move.
All three of those of us who have reached full health and don't have to address Lyme at all mention exercise in our posts. We did not reach full health in the same fashion, but we all exercised.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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glm1111
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posted
About parasites: If you have this co-infection of Filarial Worms, www.lymephotos.com they can cause havoc and be life threatening. After 4 yrs of abx, incl 6 mos of IV rocephin, I was still sick because of this infection.
I do believe abx saved my life in the beginning as I was very toxic, but would have never eradicated this kind of infection. I also was infected with strongyloides (roundworms) which caused my severe asthma.
Burgdorfer found this infection in the original ticks he dissected, and researcher Dr. Eva Sapi is finding them in over 40% of the ticks she has dissected. For those that are chronic with Lyme, it could very well be that antiparasitics are needed as well as abx and antifungals.
Surprised Dr. H. is not on to this. Staying on abx for life can really cause problems with immune system suppression later on.
When treating parasites, you have to be VERY aggressive with either pharma antiparasitics, or a combo of strong herbal antiparasitics and salt/c. Perhaps, abx, antiparasitics and antifungals would be a good choice for those chronic.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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MannaMe
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posted
Dr H mentions in his book to exercise "inside your envelope' - meaning only doing what you are able to without overdoing it for YOU.
Posts: 2600 | From USA | Registered: Aug 2011
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posted
"maybe the last page says "good luck with this one, start getting your funeral arrangements made".
OMG, I laughed out loud at this! Ain't that the truth.
Great convo, BTW.
-------------------- "Yeah, I miss me too." Posts: 235 | From NY originally registered in 2008 | Registered: Nov 2012
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Lymedin2010
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posted
Exercise, I wish it were true.
Body weights,curls, & situps only managed to bring me down & make me worst. I built more muscle than ever before, but my symptoms get worst & I decline. Also the joint issues hit harder.
It feels like my body is dehydrated & not absorbing enough nutrients. When I stop exercising then I fall back into a better place. Start it up again & the same routine.
Posts: 2094 | From NY | Registered: Oct 2011
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GretaM
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posted
That's the great thing about this thread, and the baffling thing about Bb...everyone's experience is different.
Before my lyme dx, I was playing competitive team sports 5 days a week.
I would sweat absolute buckets on those days. I could wring out the sweat from my ponytail.
NSAIDS were being popped like tic tacs, haha, because my joints were SO sore.
When I got my lyme dx, I continued to play for three months or so, and then quit, because working 40 plus hours per week at my VERY physical job, and the sports were causing me too much pain.
Also, I read Dr B's guidelines, and wanted to follow them as closely as possible.
What I've noticed since then, is my lyme symptoms are very slowly getting better, but my overall health is getting worse.
I also had my genes tested, and have some reall uncommon doozies for detox.
I think the sweating during team sports was actually helping me. It was the only way Pto detox from sulfur for me. Plus it is good for the soul to compete. (I think).
My job is two days a week now, and on those two days, I climb numerous stairs, ladders. I lift heavy heavy things, crawl, crouch, squat, bend.
It is basically a heavy workout for 8 hours steady two days in a row, and it completely drains me.
Sorry my point with this is that everyone's version of "exercise" is variable depending on their physical capabilities.
I would love to add in some light swimmiing to help my back, but I am afraid of not being strong enough or having a ticker incident while in the water.
My twitching is very bad today-I'm sorry for the misprints and doubble letters.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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dbpei
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posted
I agree, this is so unique for each person. It must be so very difficult to exercise when you feel like you can't even move or get out of bed.
Greta, I bet all that exercise you used to get helped to keep your immune system strong, but eventually lyme and co. won over.
I am convinced that my daily regimen of low impact aerobics with strength training and yoga stretches kept my immune system strong and bought me some good years before things went off kilter.
I stopped exercising for a while when I started treatment. It was not good for me to stop. I gradually started up again, but to a milder degree and to this day, I still try.
I feel so fortunate that my heart is still strong and I think that the type of exercise I do is okay for my overall health. It improves circulation and muscle tone, getting me to sweat, and gives me a little more energy for the day. I wore a heart halter monitor for a day just to be sure and not one arythmia showed up. My doc was amazed at this.
Greta, is there any way you could work 2 days, but space out - like Tuesday and Friday? That exertion must take its toll.
You have probably tried this, but would yoga stretching help in any way? If you could have those 2 (separated) work days and do some light yoga stretches and hot epsom salt baths in between, it might make a difference.
Posts: 2387 | From New England | Registered: Aug 2011
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GretaM
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posted
Dbpei-that is a really good suggestion!
The work days may not be easy to split, but I will ask. It sure would make things easier
The yoga and epsom soaks are a great suggestion!
I've never considered yoga stretching before, but it could really help the old bod.
Thanks dbpei Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by Lymedin2010: Exercise, I wish it were true.
Body weights,curls, & situps only managed to bring me down & make me worst. I built more muscle than ever before, but my symptoms get worst & I decline. Also the joint issues hit harder.
It feels like my body is dehydrated & not absorbing enough nutrients. When I stop exercising then I fall back into a better place. Start it up again & the same routine.
Yes, it will move around toxins and make you feel bad. I had that experience. Eventually, you move the toxins out and feel better. That's why it's important to GO SLOWLY and do what you as an individual are able to do. If you're feeling that bad, you're doing too much.
Everyone moves every day. As "exercise" move more than normal. Think of your body as a stagnant pond with algae everywhere. When you put a fountain in that pond the movement of the water, the oxegenation of the water, gets rid of the algae. You can only get rid of so much at a time. Don't go too fast.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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surprise
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posted
I agree with the exercise, it's helped me more than I can say. My first year of treatment, which was heavy antibiotics,
I didn't exercise 10 months straight, and my muscles became very weak- I couldn't open jars, lift things-
Brushing and Epsom salt baths before bed help exercise recovery as well.
I lift weights to DVD's at home, and/or walk a 2 mile hilly neighborhood.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Ellen101
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posted
Greta unfortunately those NSAIDS probably did a number on your gut which in turn could be causing some of your issues now.
Posts: 1750 | From United States | Registered: Dec 2011
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map1131
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posted
My cardio just informed me last week that he doesn't want me exercising to exercise. He wants me to get back to being a walker and having as active life style as I can but.....
he doesn't want me out there with quick paced walking because my body clearly says no. Of course I'm a heart patient too, so I have to listen to my body.
I asked cardio about getting back to YMCA and warm water work outs in the pool? I told him about doing this 2-3 times a week for one hour for 18 mths and loved it. One day, I got scary ill during it and got out and came home.
I quit going after that because something just told me NO don't do it. Little did I know that I had heart illness.
That's when he told me no, some walking only at your normal pace, daily for short walks around the neighborhood and no other exercise at this time.
So that's my goal for me. New Year 2014 goal. It would be too cool to become a walker like I was prior to this illness. I love outdoors and nature.
Maybe I can become a tree hugger again.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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desertwind
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posted
In terms of exercise, I think a lot has to do with your premorbid condition. Everyones exercise "envelope" is different.
Dr. H. gave me the okay to start running and biking again once I regained my strength. For me that was one of the most helpful things I could have done for my body. As an endurance athlete, it was a natural progression and one that my body responded well to. I knew/know my limits and try to stay below them. I could not even walk to the bathroom w/o becoming exhausted prior to treatment and would never has attempted running then!
I think there is a time and place for exercise w/Lyme and is highly individualized.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Lymedin2010
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posted
A year ago I was able to do the exercises just fine & felt great doing it. Fast forward another year+ with ABX, I have gotten worst.
I am able to do less now, because my body feels deoxygenated & weak. I move or talk too rapidly and I get deoxygenated. I was able to do twice as much last year & not be out of breath to the point where I cannot do anything.
When I attempt to do exercise every other day, my body feels weaker, depleted. I have more pain, where I never had before (wrists & ankles), amongst other places. This is already a muscle built body & weeks into exercise.
This did not happen last year, again where I did double the exercise.
It is just that my body cannot support the muscles and the GROWING infection at the same time, so I go down hill. Not even the weekly workouts apply to me & to some others that I have spoken to here either.
Plain & simply put continued ABX usage has led to progression of disease for me. That is not to say that I would have not declined more rapidly without their usage. I need to be on them in order not to be incapacitated at this point, but I know there will never be remission for me.
The only chance I had was to stop at 3 weeks into the first ABX (IV Rocephin), where I was 90%-95% better. Perhaps then I would have slowly declined, as I had been for years (headaches & neck pain, minor but constant fatigue, & mild stomache pain)
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