posted
I have! I got better from the Lyme with the Bionic 880, which made it possible to beat the babesia after 20 months when various combinations of Mepron, Malarone, Lariam, Artemisia did not work. Once the Lyme was gone, I just drank tonic water for symptom control and continued to use the Bionic 880 to keep my immune system working against infection.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
lol. I think Six is one of the only ones who can claim this fame. It seems like the kitchen sink and then throwing two dishwashers and a furnace at this organism doesn't hurt it.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I managed to beat it. I took Mepron for about 1 and one half years. A few breaks in there, and also took Zithromax and Artemisin. I also took Byron White A-Bab. This seemed to help over time and very gradually.
It takes a really good LLMD to get rid of babs.
My daughter is off of Babs meds too, has been for a few months. She has not relapsed.
It's possible, it just takes what seems like forever.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
| IP: Logged |
posted
I took mostly clindamycin and quinine. Some malarone (got nowhere) and then finished it off with artemisinin and zith.
never took mepron
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I got rid of it 7 years ago by taking Bactrim DS and pulsing artemesinin for 11 months.
I think I had a mild case of babs. I really had no symptoms of it, but tested positive through Igenex FISH test, meaning that they saw it in my blood through a microscope.
My doc wanted to give me mepron/zith, but zith gives me hives. So, we had to go the Bactrim route.
Immediately upon beginning my treatment, I began getting weekly babs flares, like clockwork. They were totally horrendous! Once I reported that (I let a month go by) the doc had me add a certain brand of artemesinin 3 days in a row each week.
I had to take the art on the day the flare was scheduled to start and continue taking it until the flare ended.
The first week I did that, the flare was dramatically reduced to nearly nothing. It was like a miracle as far as I was concerned.
We knew when I was done treating by the flares. They eventually went from weekly to every 14 days. Finally, no sign of a flare at all.
Since winter was coming on, my doc made me stay on the treatment 5 more months symptom-free. He won't let anyone stop their treatment in winter. Says it could lead to a relapse.
So, I treated babs a total of 11 months and got symptom free after 6. That was all 7 years ago.
I have had steroid injections in my spine and still did not get lyme and cos back. So, I say I am cured.
My doc required me to do the Burrascano exercise program. He said I would NEVER get rid of these diseases if I didn't do it.
So, I lifted weights for 1 hour every other day. I did a full body workout each time (arms, chest, back, legs, etc.). It took me a few months to be able to do it, but I persevered.
I believe this weight lifting was crucial to my recovery. My main symptom for 10 years was extreme muscle weakness, so it was like a joke telling me to lift weights for 1 hour. I could barely walk down the steps to the weight bench.
But, it worked then, and in recent years when I used a steroid nasal spray daily for 3 months, the weight lifting worked again to restore my immune system.
That nasal spray weakened my immune system and I was catching one illness after the other for months. So, I went back to weight lifting and all the sickness stopped.
Now, I do it twice per week. It is as important as the meds. Read that in Burrascano's Guidelines. It does so many things like driving the meds deeper into the muscles so they can get hidden germs, heating up the body which likely kills more germs, etc.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I started doing some light weights, but I just don't feel up to it most of the time.
All of my symptoms started last August after a trip to TX and I started treating in January. I didn't think it would be such a long road since I caught it all relatively early, compared to a lot of people...
I have just been feeling so hopeless lately.
My fiance and I are talking about canceling our wedding because all of our money is going to treatment and I am only working part time. I feel like it's ruining my life. We were also going to start trying to have kids after getting married and now I feel like I won't be able to bc I don't want to pass lyme and babesia on to a baby... I'm not sure how to stay positive about any of it anymore.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
| IP: Logged |
quote:Originally posted by Larae30: I started doing some light weights, but I just don't feel up to it most of the time.
I was never up to exercising, but I did anyway. I lifted light weights. I was so weak that someone had to take me to the gym. I only did strength training as I had no stamina for anything else.
Well, except walking, I walked, too. Sometimes it was from my front door to the corner (we live on the corner). Sometimes it was a longer walk with someone to hold onto for support.
I don't believe it's possible to get well if you don't move. Fatigue was a MAJOR symptom for me. So was pain. So I understand how hard it is. I think you have to think like an athlete to beat Lyme. Athletes think of what they have to do, what to eat, how to exercise, etc., to achieve their goals. Lyme patients, in a way, are like athletes.
Think of a stagnant pond. You put a fountain in it, and the movement gets rid of the algae, scum, etc. Lyme patients (and healthy people, too), need movement.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
That exercise program is a must. I NEVER felt up to doing it, believe me.
I am going to give you a long quote to spur you on as to how important the weight lifting is:
"LYME DISEASE REHABILITATION
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.
Although the scientific basis for the benefits of exercises is not known, there are several reasonable theories. It is known that Bb will die if exposed to all but the tiniest oxygen concentrations. If an aggressive exercise program can increase tissue perfusion and oxygen levels, then this may play a role in what is being seen.
Also, during aggressive exercise, the core body temperature can rise above 102 degrees; it is known that B. burgdorferi is very heat sensitive. Perhaps it is the added tissue oxygenation, or higher body temperature, or the combination that weakens the Lyme Borrelia, and allows the antibiotics and our defenses to be more effective. Regular exercise-related movements can help mobilize lymph and enhance circulation.
In addition, there is now evidence that a carefully structured exercise program may benefit T-cell function: this function will depress for 12 to 24+ hours after exercise, but then rebound. This T-cell depression is more pronounced after aerobics which is why aerobics are not allowed. The goal is to exercise intermittently, with exercise days separated by days of total rest, including an effort to have plenty of quality sleep. The trick is to time the exercise days to take advantage of these rebounds.
For an example, begin with an exercise day followed by 3 to 5 rest days; as stamina improves, then fewer rest days will be needed in between workouts. However, because T-cell functions do fall for at least one day after aggressive exercises, be sure to never exercise two days in a row. Finally, an in intermittent exercise program, properly executed, may help to reset the HPA axis more towards normal. On the following page is an exercise prescription that details these recommendations." (page 31)
When it comes to these diseases, 3 months of treatment is just the beginning. You have to decide to be in this for the LONG haul. That's how you are going to get your life back.
You have to be tenacious. You have to fight for what you want. You can't just give up. The diseases won't, that's for sure.
Don't give up on your life. Fight!!!
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I got rid of it by taking salt/c and antiparasitic herbs.
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
| IP: Logged |
posted
I always find it interesting that two of us who are very healthy today and show no signs of Lyme got better in VERY different ways, yet BOTH of us stress that you have to exercise!!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Larae.. I'm so sorry you are feeling so hopeless. It really is a long hard road. I kept moving too when I was sick. Do what you can and increase it each day.
Maybe you could join our exercise group for encouragement and support! Everyone is welcome!
posted
I am an occupational therapist and am working PRN and so I lift weights with my patients and am on my feet walking long hallways and everything, but I get so out of breath and feel like I'm going to pass out and I really don't want to pass out at work!
Air hunger has been really bad for me, I feel like it has gotten worse since starting malarone. It was getting better with art.
I want to ask my LLMD at my next appt abt dosages too because sometimes I feel like he doesn't do high enough dosages of things? Also, is malarone as effective as mepron? I cannot afford mepron because after insurance it is $1300/month for me, while malarone is $66. What do you do when you run out of money to treat? All of my credit cards are maxed now today because my car's transmission decided to fail...
I want to attack it the best that I can and stay hopeful, but it's so hard when I don't find many success stories and dr's seem to all address it differently.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You don't do the weight lifting while you are at work then. You do it at home or some other place.
You do one CONTINUOUS hour (that is key), a full body workout (just as important). I know you are not doing that at work.
You use very light weights, work all muscle groups. If you can't do 1 hour, do 30 minutes, etc.
I was only able to do about 5 minutes when I started. I did it at home. My husband went downstairs with me and encouraged me. I needed that. I would cry because I was so pitiful, trying to lift just an empty bar, do one crunch, etc.
This costs you NOTHING! and yet it is key, per Burrascano. This is how you are going to strengthen your immune system which is needed to kill lyme.
Lift soup cans with your arms. Tie them to your legs and lift them. Figure out ways to do this without it costing you any money.
You go to bed after the workout. Very important.
When you are treating babesiosis, it is not unusual for the symptoms to flare. Sounds like that is what is happening with the air hunger. So, don't work out on flare days.
Work up to an every other day routine. But, whatever you do, do some non-aerobic exercise. Stay away from aerobic exercise for now.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I am happy to say that I beat babs as well. I used mepron/tindamax,malerone,initially. I changed docs after not having much success . New doc put me on alinia for 1.5 months then on to a-bab. I feel like the a-bab was the nail in the coffin for babesia. Not an easy road to walk but now that I am free of this pathogen I am so much better. Still treating for lyme proper after two years of treatment. During treatment my legs were basically useless as one of the herxheimer symptoms was weak ,uncoordinated legs. I FORCED myself to exercise,as others have said ,I feel it is key to recovery.
Posts: 342 | From northern california | Registered: Dec 2010
| IP: Logged |
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
TF you mention that you go to bed after a workout. What time of day did you typically workout and for how long do you sleep?
Taking a nap mid day for me usually means that I can't fall asleep at night afterwards. This then leads to a cycle of insomnia and increased exhaustion.
Also, just curious as to how much you weighed during your treatment. Interesting how confident Dr. J was about treating smaller children when I spoke to him. Seems from some of the stories I've heard is that petite/smaller and more active is beneficial when battling this disease.
[ 04-17-2012, 11:44 AM: Message edited by: Lymetoo ]
Posts: 2087 | From NY | Registered: Oct 2011
| IP: Logged |
posted
When I was sick I had to go back to bed after a workout. That was only when I was sick, and I didn't sleep, I was just resting in bed, sick. If I didn't feel I needed bed, I didn't go, but most of the time I did.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
I have a question I want to work out so badly. But s Doesn't dr b say you should not work out with an active infection? Oris that just aerobic exercise.
Every time I try anything I. Rash hard and since I ha be just begun real treatment I do not know how to balance this.
I really want to strt with weights this week just curious about the active infection and ser use dilemma.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
| IP: Logged |
posted
Dr. B says that you SHOULD work out, but not aerobics.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
lymeboy
Unregistered
posted
He means aerobic exercise. You should be lifting weights. Start slow and small. Even if you feel like you can do more, just do a light amount. Don't do the full hour at first. Do 20 minutes. maybe less. But do a routine. Even if you crash, get up and do it again after resting for a day. Once you are in the habit, your body will ask for it, and before you know it, you'll be adding weight and reps. Your goal is to get to 1 hr. of exercise. If weights are too much, you could start with stretching. Strecth for 20 minutes. Just get your body moving and strengthening.
I cannot say whether Babesia is gone for me, but I am in great physical shape, and I started with tiny little weights a little at a time. Now I am starting to get a 6 pack believe it or not. Not bad for a sick person!
IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I did my workout in the evenings--after work and after dinner. So, I would start at 7 p.m. or so.
Then, I would go to bed for the night.
At the time, I weighed about 112 pounds.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I will start doing weights this week! I am going to wait until I take boards Thursday and then start and continue to do them with patient's also. Thanks for your responses.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I'm glad I read this when I walked a mile today and did some isometrics, but I can't imagine being able to do a full hour of straight exercise ever!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
And yes, Babs is something many of us are stuck dealing with as a chronic infection. I have adopted the mindset, as have others I know, that it will pop back up and when it does, we will knock it back down until the next time. I can live with that as long as I have some quality of life! Mine's been so poor I'm thankful for anything that is a step above a Lyme coma.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
TF, I had contemplated your case for a while and I was willing to put down money that you were under 120 pounds. �I believe this played a BIG role in your recovery.
I also tend to workout at 8pm and thereafter, this way I can crash in bed for the night.
On another note this statement is very interesting, "It is known that Bb will die if exposed to all but the tiniest oxygen concentrations.". �Now where is the proof? �Are there any articles or studies on this? �I would imagine they can convert to cyst forms when exposed to O2, but with the tinies amount die off spontaneously?
Posts: 2087 | From NY | Registered: Oct 2011
| IP: Logged |
posted
Can babesia be passed congenitally? This is what I worry about. I really wanted to have a family and now being 31 and about to be married and hit with these things has me really discouraged for being able to start a family
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
| IP: Logged |
posted
Do ID dr's treat babesia? or do they ignore it like the do lyme?
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
| IP: Logged |
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Larae, I think this is worth mentioning now after my experience tonight.
Someone online told me that GSE was what worked the best for their Babesia symptoms, more so than Mepron or Malarone. It is also reported to be a good biofilm buster and possibly cyst buster.
I had taken GSE and found increased herx when taking it for just for a few days. �I had stopped taking it in order to determine if the symptoms were due to GSE or my new ABX combo. �
Tonight i have taken it again and found the same results. �I get waves of tingling in hands/legs and hands/feet. �A feeling of unwellness and as if some toxin is coursing my blood. �It feels like a major die off shortly after taking GSE. �I also get more twitches and movements and pains in key spots where I typically get pain on and off.
I am currently taking Amoxi, Zithro, and Flagyl. �I bet you if you start to take GSE you just might get the same results if babs is your problem. �Just start slow as in 1-2 drops the first time. �Today I was feeling brave and took 8 drops, the amount that I had reached before I had stopped taking it last.
Posts: 2087 | From NY | Registered: Oct 2011
| IP: Logged |
quote:Originally posted by Lymedin2010: TF, I had contemplated your case for a while and I was willing to put down money that you were under 120 pounds. �I believe this played a BIG role in your recovery.
- Sixgoofy and I are "light weights" too. What's up with that? In my mind, I would say it's due to a diet free of sugar and starches....which would surely go a long way to helping someone recover.
NO?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm guessing being very light makes a huge difference too. Outside of the issue of losing so much weight that you're in a danger zone.
Based on what Keebler writes, she seems to eat the best diet on Earth. I'm guessing it not all diet - some genetics play a part. Diet of course is huge, but not the end all be all.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
lymeboy
Unregistered
posted
If being lighter makes a big difference, could increasing dosages for a bigger person be more effective?
IP: Logged |
posted
You'd have to ask your LLMD. I think in many regards the drs already adjust dosages per weight. I think it's the lifestyle and diet that makes the difference.
Especially if you have candida / yeast and are not addressing that. You can't get well that way.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I weighed myself yesterday and I've lost about 12-15 lbs since everything started for me last fall, prob. most of it has been since I cut out alcohol, sugar and gluten. I now weigh about 135.
Can I add GSE in while also taking flagyl and all the other abx. I wonder if there are any contraindications or anything that cannot be taken with GSE? I assume you take it a couple hrs away from abx?
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I am SHORT, so my weight was average for my height.
I think I got prescribed the same dosages that everybody else got, so I often wondered if that is what did the trick.
For lyme, I took 1500 mg of amoxicillin 3 times per day. That is 4.5 grams per day.
How much do you think the doc would have prescribed to my 215 pound husband? Double that? I doubt it.
For bart, one 500 mg levaquin pill per day. Do you think a 200 pound person would be told to take 2 per day?
Here is the Levaquin dosage per Burrascano, page 24:
"Treatment consist of 500 mg daily (may be adjusted based on body weight) for at least one month."
So, I don't feel like my dosages were adjusted for body weight. It is rare a doc is going to tell you to take 3/4 of a pill, etc. because it is just impossible.
Is Burrascano just saying to up the dosage for a larger individual? What is the average weight of an adult?
Take 2 pills if over 200 pounds? I don't know. I never had any such discussion with my doc. I got Burrascano dosages of everything.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Clarification. BIG difference in what I know and what I do.
Seekhelp writes: "Based on what Keebler writes, she seems to eat the best diet on Earth." (end quote).
Oh, thanks for the compliment and the good LOL.
I KNOW the best things to eat. And I never eat processed foods, fried foods, gluten, etc. so in terms of avoidance, pretty good.
However, budget and energy constraints do prevent me from the optimal approach. I eat too many leftovers cold, right out of fridge (no microwave, on purpose).
I might make a meal from a 1/2 cup of nuts because just too tired.
The other day, I consumed only a whole 4 oz. container of pesto for dinner as it was the only readily edible thing around.
Fish only "happens" once a month due to food delivery (and money) as it needs to be fresh (since it's previously frozen). (Safe) Fish should happen 2 -3 x week or more.
I do so well with Wild Salmon for breakfast.
I've tried frozen but have just never found a good source.
The challenge of food prep is a major one for everyone, and it just requires paying attention and being around running water that likes to be loud.
But I just think of how lucky we are to HAVE running water and food that I don't have to plant, tend, harvest, cart in from the field.
Time for a "Thank You" to all farm workers. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Back to the previous posts about balance of WEIGHT to DOSE.
Even the allicin protocol I was on for a while had a dose dependent upon weight - but just for the allicin, not for other herbs.
A professional should guide that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
lymeboy
Unregistered
posted
jeez. could I be underdosed? I feel like I couldn't really do much more abx. But what if I am just creating resistance?
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Larae, I was worried about taking GSE with ABX as well. Out of all the drugs that I have taken so far, GSE has the biggest impact on me. I now believe, since I don't herx on Tindamax or Flagyl or ANY other ABX for that matter, that my biggest issue is biofilm.
I did herx on Amoxi on only one pill the first day that I had taken it, but thereafter I could not detect much difference than the usual daily migration of symptoms.
It has been shown that the active ingredient of GSE is not the Grape Seed extract, but the preservatives used to prepare the GSE. I am taking GSE with Amoxi, Flagyl, and Zithro as I mentioned. Take it for one day at 2 drops and you will most likely get a hit. Others have reported similar herxes and you can do a search on GSE on TOPICS only.
TF, glad to see that you had your suspicions too. Like I said, when I spoke to Dr. Jones he was vehement about his ability to treat and push back the disease with children. He would NOT however treat adults.
Why do you think this is? Children also get undiagnosed for long periods of time.
I am one case in 16 people, from six houses RIGHT NEXT DOOR to each other who got bit. Guess who is having the toughest time? Me and why? I am the most overweight. I was 250 when I got sick and maybe more, and I am now at 230.
I have been on ABX the longest and the most diverse amount of ABX as well, but I continue to get sick.
Out of all the people who described being deathly sick in this group, I am the ONLY one who is getting worst with treatment.
I should have been given 4 Grams of IV Rocephin, instead of 2, and 2 Grams of Biaxin instead of 1 G. The shortage of dosage continued with other ABX's. I should have been given a cyst buster such as Tindamax or Flagyl at the start, not months later when I have become sicker.
To this date I am getting less Amoxi than you had, at 1G 3x day (for a 230 pnd man) & no probenecid.
I hear story after story that the male of the household is having the tougher time with this disease, regardless of same dosage. Pamela Weintraub's husband is still having a tough time although he has the same disposal as she did.
This is not to downplay any of the other important factors, only to state that weight can be the difference between getting better and remaining chronically sick.
I believe if you are not taking the right combo of drugs for whatever unknown or concurrent affliction (from co-infections to candida to parasites), then weight will not make a difference.
Posts: 2087 | From NY | Registered: Oct 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I think Dr. Jones will not treat adults because he has decided to specialize in children.
He is overloaded just helping children. And, he is the expert in children with lyme.
So, it makes no sense for him to take on adults also. There are plenty of lyme docs for adults.
What is sorely lacking is an expert pediatric lyme doctor.
Why should he go outside his specialty? Nobody does that if there is a tremendous demand for their specialty.
Lymedin2010, what you are describing is inadequate lyme treatment. Sounds to me like it is time to find a new doctor.
It doesn't matter that the doc is helping others. You obviously need the Burrascano protocol to get well and you are not getting it. So, you need to move on.
As you said, rocephin is supposed to be 4 grams per day, 4 days in a row each week. The cyst buster can be added a month or so later, but not many months later.
The amoxi dose is inadequate and no excuse for no probenicid.
How many mistakes do you want to put up with and how much time do you want to spend taking low dose antibiotics? I know it is often difficult or even traumatic to change doctors. However, I did it and it was the very best decision I ever made for my health.
Everything turned around when I went to a doc who followed the Burrascano protocol.
Here's what pushed me to make the change: When the current doc told me, "Well, it looks like you are just one of those people who are going to have to stay on antibiotics the rest of your life." !!!!
Right. And I knew he wasn't following Burrascano. I wasted 2 years with this doc.
I switched doctors and in 13 months I had been successfully treated for lyme, babs, and bart. (After wasting 2 years treating lyme only!)
So, you have to "know when to hold 'em and know when to fold 'em." It's your health.
Regarding the male having the tougher time with the disease, Dr. H. said something interesting in his talk on babesiosis at the Toronto Lyme Conference. Here is a quote from my notes:
"Indicators of bad outcome with babesiosis:
male sex, extremely high WBC"
So, do you have an extremely high WBC?
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I do wonder how much being a "lightweight" helps. A lot of toxins, hormones, etc. are stored in fat, so how much does that hurt a Lyme patient?
Is the reason many Lyme patients gain weight due to needing to store toxins that might otherwise overwhelm the detox organs?
I had parasites. Do parasites serve a purpose of holding toxins away from our detox organs? I know I felt horrible when they died. And do the parasites make the need for higher doses?
I do eat a very clean diet. I did before I got sick, and I still do after I am well. My family has been into health and fitness since even before I was born, so it's something that comes naturally to me.
There are just so many questions and no easy answer. So many variables to getting well, yet I do think some things are the same for everyone ... diet, exercise, sleep.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I will add this fact also: I LOST weight when I got really sick with lyme.
So, does this indicate something significant?
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Me, too, TF, but I think mine was due to parasites. I got down to 123 pounds and I'm 5' 8". I had to eat about 4000 calories per day to maintain that weight.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
WBC's and blood is all normal, except low levels of Vit D and Vit B. I am taking more Amoxi and had also added Rulide and GSE on my own as well.
That is a very true statement about Dr. J, �but you had to have heard our conversation to understand this point of view. �He understood that adult treatment is hit or miss and literallly wants nothing to do with it. �He steered away from even adult questioning regarding Lyme and I was taken back and surprised by how confident and assured he was with the outcome for pediatric treatment.
I asked him if he would consider treating an adult. �Trust me when I tell you that he clearly stated that adult treatment is at times questionable and wanted no part of it. �One of the front desk ladies there admitted that her husband has given up on antibiotics after trying for a while. �Not even an inside connection with Dr J helped him.
Many clinics are busy, but they hire NP's and assistance to keep up with demand, such as Dr. H. �If Dr J had that much confidence in adult treatment, then I am sure he would have expanded. �I know if I had the knowledge and the assurance to treat adults I surely would.
There is definitely a lack of Pediatric Lyme experts, most likely because it carries bigger risks for doctors. �Treating adults is risk alone, treating children openly will most likely lead to license suspension at this current state of time.�So why risk something that you have worked hard for your whole life? �It makes sense from a doctor's and a personal perspective.
My daughter and niece are being treated by Dr. J. �There is no secret ABX, basically the same meds they use to treat us. �The STANDARD ones! �We are not even talking about Bacillin,�Cryptolepis, Allicin, GSE or any of the other ones that we adults try desperately. The fact that Dr. J is having a high success rate with children, gives credence to the body mass to drug ratio.
Are these children told not to eat sugars and carbs? �Guess what? �They are not and they are getting better despite this. �Are they told to have an exercise regimen to strengthen their immune system? �Again no.
Posts: 2087 | From NY | Registered: Oct 2011
| IP: Logged |
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Clindamycin/TuTu took it for Babs..have others?/
What family of abx's is it in... I don't see it mentioned here except this post and haven't else where...Is it a lyme killer also??
So our doses from above comment are just to low?? All Dr. J's kids can't be skinny...
Posts: 2563 | From Denver,CO | Registered: Aug 2011
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Are there any videos or DVD's that any of you would suggest for help with the type of exercise that Dr. B recommends for us? I can go for a walk for an hour (would be exhausting though...) but would prefer to do my exercise at home.
I have a nordic track and wonder if this type of exercise would be okay? It may get my heart up too much...
I have been doing aerobic exercise for many years and would tape shows from Fitness TV with a combination of strength training and aerobic exercise. One that I have been doing consistently is Gilad. But it may be too aerobic.
I also practice yoga (as able) and have a few DVD's for various types. I think that is acceptable, no?
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Burrascano didn't make any videos or DVDs. But, here are his words:
"Increase mobility, tone and strength while protecting damaged and weakened joints, tendons, and ligaments, and teach these techniques to the patient. Use minimal resistance but a lot of repetitions in any exercises prescribed. At the start of the exercise program, especially if the patient is weak, avoid free weights, bands and large exercise balls, and favor machines (especially hydraulics) that can guide limbs through a prescribed arc; free weights, etc. can risk hyperextension and uncontrolled movements that may cause or add to injuries. Transition the patient slowly to the gym-based program outlined below. Note: aerobics are not permitted.....
Please work one muscle group at a time and perform extensive and extended stretching to each muscle group immediately after each one is exercised, before moving on to the next muscle group...
1. Aerobic exercises are NOT allowed, not even low impact variety, until the patient has recovered.
2. Conditioning: work to improve strength and reverse the poor conditioning that results from Lyme, through a whole-body exercise program, consisting of light calisthenics and/or resistance training, using light resistance and many repetitions. This can be accomplished in exercise classes called "stretch and tone", or "body sculpture", or can be achieved in the gym with exercise machines or carefully with free weights (see cautions above).
3. Each session should last one hour. A gentle hour is preferable to a strenuous half-hour. If the patient is unable to continue for the whole hour, then decrease the intensity to allow him/her to do so....
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)
So, you go to a gym and use all the weight machines. Work the arms, the legs, the back, the gut (crunches, etc.), the chest, the buttocks, etc.
You work each muscle group, you use very light weights (or just the bar if bench pressing), you go from machine to machine, and you do it for 1 hour. You do lots of reps.
The key words are "calisthenics and resistance training."
So, that is not walking or a nordic track.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
TF - thanks for your response, but I have never liked gyms and preferred to get my exercise at home.
That is why I am looking for some type of a video or DVD that has the elements of what Dr. B is suggesting. I was hoping that someone might have some suggestions.
It seems that yoga or pilates might fall into the category of what Dr. B is suggesting. There are plenty of DVD's out there for that.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
posted
PIlates would fall into the category (I don't know much about yoga). If you're doing it at home, since you won't have the equipment for resistance, you might even use some light (2 pound) hand weights along with some of the exercises.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I lifted weights at home in my basement. We had a simple weight bench that included a bench press and leg lift. And, we had lots of different size weights to put on.
Hubby rigged up a pulley from ceiling so that I could pull down on a rope with weights tied to the end of it.
I also did hand weights and crunches and back exercises standing against a door.
I strongly advise you to do weight lifting. Figure out a way.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I just wanted to "chime" in about being a lightweight. I am 5"7" and 120 lbs. I've always worked out and always eaten healthy. Even more so now.
I've also been on hardcore abx. Been compliant to a "T", and I am still struggling. I've been in treatment for over a year and a half now.
My husband says I'm the healthiest sick person he knows. I believe it's all in our genes, if you can detox, you'll do fine, if you can't you will have trouble.
Posts: 845 | From Northeast | Registered: May 2011
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Thanks everybody. RC1 - I hear you... I have eaten a healthy, Mediterranean diet and exercised daily for the last 20 years before contracting Lyme.
I think my immune system was so good, that the Lyme learned to live harmoniously in my body for the last 6 or 7 years. Then some 'event' happened that gave the Lyme bacteria the power. Now it is an uphill battle.
I am trying hard to keep my exercise regimen going but it is not easy.
I already use small dumb bells every day in part of my work-outs that I already have on video (Gilad and Denise Austin).
I guess what I have to do is to skip the aerobic part of these work outs and just do the body sculpting sections with the weights - along with the stretching.
Then if I add some yoga and pilates, I should be able to get the hour in and not do any damage by getting too much aerobic exercise.
From what I remember reading, this should be followed by rest and should only be done every other day.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
"I think my immune system was so good, that the Lyme learned to live harmoniously in my body for the last 6 or 7 years. Then some 'event' happened that gave the Lyme bacteria the power. Now it is an uphill battle. "
This eerily reminds me of my situation. �The further I educated myself, the further I could push back my symptoms. �All my past symptoms were mild and seemed within the bounds of normality. �I could have lived an oblivious normal life had I not been hit with a virus.
My daughter had gotten sick with a virus, then my wife and 2 days later it hit me (my EVENT). �The week after I felt tired and a lack of energy, and the week after that my life would change.
I've been under tremendous stress and lack of sleep over the years. �I've been sick on and off, what seemed to be your typical sickness and nothing out of the ordinary. �I wonder why it had not taken over years earlier?
Viruses will at times exchange DNA snippets with their infecting hosts, at times this leads to cancer cells. �I contemplated the possibility of the virus bestowing BB with the code for one of my surface proteins, which basically renders my immune system useless against BB. �Over the years this had the chance of occurring, but at one point in time the right combination of events came together and allowed a single BB this key to the immune system. �This could be one reason some of us remain chronically sick.
Scientists have found human cells with segments of BB DNA, which is basically a cross bread of your cell and BB.
LLMD's have reported that those with a good immune systems tend to ultimately get hit the hardest. �Over time BB and co-infections slowly take foothold and expand with each new illness that one encounters, up to a point where your immune system is compromised and things eventually run amock. �This is probably a more frequent scenario.
TF and RC1, what did you test positive for? �Perhaps RC1 has parasites, mono, additional viruses and would hence have difficulty. �Even Dr Jones has difficult cases, but his overall outcome is more optimistic.
When it comes to body mass I believe I am just restating what Burrascano spells out in his dosage listing, but toward the LLMD's that are not followers of Dr B's dosing guidelines. �Your standard LLMD cannot expect to prescribe 300MG of Doxy and 1000MG of Biaxin to a 120 pnd female who gets well, to a 240 pnd man and expect the same results. �
Even if it diminishes the male's symptoms, more likely he is bound to relapse.
Posts: 2087 | From NY | Registered: Oct 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I tested positive for lyme, babs microti, and bartonella.
Posts: 9931 | From Maryland | Registered: Dec 2007
| 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!
![[Smile]](smile.gif)
It seems like the kitchen sink and then throwing two dishwashers and a furnace at this organism doesn't hurt it.
![[Cool]](cool.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic