gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
Has anyone tried taking abx every other day or just 3-4 times a week to avoid herxing and get better? I am having a hard time dealing with herx while watching my one yr old. it seems like it would still do the job just not as quickly and painfully. So has anyone done this?
Posts: 1535 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
posted
Some do the pulsing. I don't think it's such a great idea.
You might kill more keets by taking it everyday and backing off the meds when you herx hard.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Detoxing is a good way to reduce the severity of herxes. Detox methods: bath soaks, dry skin brushing, drinking lemon water (fresh lemon, not bottled), exercise (weight lifting, etc.), IR sauna, etc.
-------------------- -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
| IP: Logged |
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
It is really hard to take these abx everyday and feel soo bad but I am trying to remember the payoff! I already drink loads of lemon water everyday, dryskin brush couple times a week, and the extent of my exercise or weight lifting is picking up my one yr old. I am really too weak to do much more than simple walking. I am really hoping that the weakness will improve soon, it is probably one of the worst symptoms.
Posts: 1535 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
Thaks Lymetoo, I haven't really thought of it as fatigue but i guess u could say that, to me it's more like a very weak feeling kinda shaky. the way i feel on the inside i should be trembling on the outside but im not. like it's too much to hold my arms up for any amount of time and if i do I start getting twitchy.... Facial twitching is what made me think, "ok I have got to get treatment, this is not right!!"
Posts: 1535 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Gigimac, I get the shaky feelings just as you described. My LLMD has me on a low dose of abx started every other day now once a day. Then on 4 days and off 2 .. I am afraid they aren't working . I can't afford this LLMD let alone start with a new one.
Lyme for 15 plus years , dx last Oct. Treatment over 6 months and no improvement. Like you I have got to do something but with no energy and no doctors near I am at a loss.
So back to your question.. I honestly don't know.
Hey, I am only about one and 1/2 hrs form Greensboro . PM me if you have a good doc near .
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
so your doc started you out on abx every other day? my doc wants me to take it everyday but i am taking every other for a few days cause i feel too bad. I will get up to the right dosage in a few days. k i will pm you
Posts: 1535 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I believe what you are describing is extreme muscle weakness. This was my major symptom on and off for 5 years and then continuously for 5 more years. For that 5 years, I really had no life.
I could not stand for more than a minute. I could not hold a phone for more than 30 seconds. Couldn't hold my mouth open to have my teeth cleaned. Legs shook like jello walking down stairs. Dreaded having to rise up from a chair.
What I learned in the first 5 years is that this could "turn on" over night and also "turn off" the same way. One day, I could be perfectly fine, able to leap tall buildings with a single bound (literally, I was climbing Mayan ruins, direct vertical climbs, huge stone steps, etc.) and the next day, I couldn't hold my arms over my head to fix my hair.
This all proves that the problem is actually in the nerves to the muscles, not the muscles themselves. (It is lyme attacking the nervous system at will.)
Lousy lyme treatment for 2 years did not get rid of this major symptom. But, a few months of good Burrascano type lyme treatment did! Then, doc moved on to treat bart and then babs.
In March, it was 6 years since I completed my treatment and I am still symptom free, enjoying my life. I have the same life I had before lyme disease.
I had to go through the horrible herxes, babs flares, etc. But, it was all worth it in the end.
I also had to start doing a 1 hour weight lifting program every other day as in Burrascano. My lyme doctor said it was ESSENTIAL if I was ever to get well. Ugh! That was so horrible to hear.
But, I started trying to do it anyway. I was determined to do everything he and Burrascano said. At first, I could only lift for 10 minutes, and that was the bar with no weight on it at all, same with leg weights, etc.
I would practically cry trying to do this workout. It took me months to work up to the required 1 hour full body workout. But, it worked!
I believe in the 4 pronged Burrascano approach to get rid of this horrendous disease:
antibiotics supplements diet exercise (1 hour of weight lifting every other day)
It really does take all 4 prongs to get well. It is not just taking the meds!
The other Burrascano docs that I recommend all say the same thing. So, do your very best to add in weight lifting, even if for only 10 minutes at first.
Nobody can conceive of this horrible muscle weakness, where your muscles cry out after a few seconds of trying to use them!
And, notice that Burrascano doesn't want you to do walking or other aerobic exercises. They lower the immune system too much. The weight lifting is the thing. Start with soup cans, crunches, leg lifts. DO IT !!!
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
Thank you TF I really appreciate the info. I will try to start off doing crunches, I used to do them alot before I got sick!
Posts: 1535 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I have pulsed abx for the past 2-3 years. It's not the same as just taking them fewer days a week. It's protocol designed by your LLMD that does not have you on them every day, but on your on days I have found the doses to be higher. It has been effective for me.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
Walking is pretty gentle. I don't see why 10-20 mins of slow-med paced walking would be a "bad" thing, especially if its to help get someone into the routine of being active.
Hardcore cardio...i agree is a no-no. I did 3 weeks of Insanity work out a year or so ago, took a year to recover from that. Harder for the body to recover from high intensity cardio.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I agree that it is hard to imagine that a little slow-paced walking would be a bad thing.
I am just discussing/quoting what Burrascano says will get a person to wellness. Walking will not. Here is the quote:
"5. This whole-body conditioning program is what is required to achieve wellness. A simple walking program will not work, and simply placing the patient on a treadmill or an exercise bike is not acceptable (except very briefly, as part of a warm-up), as aerobics can be damaging and must be avoided." (page 32)
If you read the entire section, starting on the previous page, you will see that each muscle group must be exercised. Walking is not going to do that, I don't think. So, for whatever reason, Burrascano says a simple walking program is NOT the exercise program that is going to get the lyme patient to wellness.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Not sure if you have been tested for co-infections but that trembly feeling is Bartonella for me. co-infections can make you worse off than if you just had lyme.
Also, if you have a hard time with herxing you can start out at a lower dose and then work up and if you have a bad day just back off for that day. It's not a race and you have to do what is best for your body.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Just walking wears me out. I can't do it (it makes me too weak). Plus, it hurts my back (babs). I used the elliptical or went on walks before I got diagnosed with lyme. Every single time I did that, I crashed on the couch the second I was done. I even got sick (colds) from doing it. It must suppress the immune system.
Lifting weights however doesn't bother me. I actually feel better during my workout. I haven't been able to work out every other day though (I'm still too tired), so I work out every fourth day. Maybe it's because I work out for an hour.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Good for you, Mindy! Keep it up. And, keep us posted on your progress!
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Thanks for your story, TF. I find it very inspirational!
I read that pulsing is a bad idea, although at one time it was common.
I understand that your abx have a half life of 24 - 48 hours, you really want a sustained amount in your blood especially to cross the blood brain barrier. Do some research on the BBB, it looks like you have many nuero symptoms and that is exactly where the abx need to be.
How long have you been treating? When I first got LD I felt like I was going to die until I got the standard IDSA treatment from my PCP. She ignored my continuing fatigue and twitching.
About a month later I felt fine for about three months, then it struck again but not as severe as the first time. I think I just recognized it faster.
After starting my LLMD Dr. B based tx I felt like I was going to die again for a couple of months, then one day I was much better.
It seems week by week I feel more normal and the persistent symptoms start to get weaker. If you just started tx just hang in there, depending on how long you've had it your recovery may take a bit. Once you start to feel better you will not regret putting up with the tx and herx.
Of course don't get so sick that you can't care for your child or that it puts you in danger. Communicate with your LLMD, he/she has seen it before and will know what to do.
Good luck!
Posts: 80 | From US | Registered: Aug 2011
| IP: Logged |
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
Thanks for the response Bleedgreen, I am now taking my abx everyday like I am supposed to and drinking lots of water, lemonwater, chlorella, and am able to tolerate how I feel at the moment. This is only the third week of abx for me. I have been sick for a year. I know that I did not get early treatment, (so many docs told me i was depressed or had fibromyalgia)but I have heard lots of stories about people who have been sick for yrs and yrs before treatment so I am hoping and believing in recovery!! Thanks for sharing your experience, it is always uplifting to hear from someone who is better!!
Posts: 1535 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic