posted
I have read so much on here about parasite treatments. I had never heard of this until now. How do you know if you have them or not?
I am a Neuro lyme patient, I am currently on Rocefin injections, Mepron and detoxing with Penella, Sparga& Burbur and sometimes Glutathione.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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MichaelTampa
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posted
If you're alive, you have parasites. They are everywhere, including in almost all of the food you eat.
Probably a better question would be how to determine if parasites are playing a significant role in current health status. To that, I would say, if you've had chronic infection and/or chronic immune suppression, then over time the parasites would naturally become much more prevalent and naturally cause significant problems. So, that would be the key to knowing it got bad enough to treat it.
Once treated, how does one know one has treated it enough? I would use energy testing for that.
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
I've had Lyme for near 16 yrs, misdiagnosed for the first 9. I was on abx for five year, with a couple of periods of remission. This last remission was for 10 months.
What is an energy testing?
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you become symptom-free on antibiotics, then that indicates to me that parasites are not an issue for you.
People with major parasite problems don't become symptom-free with antibiotics. They only begin to feel well once they have treated parasites.
Dr. H of New York state is calling parasites a coinfection of lyme disease. As you probably know, you cannot become symptom free if you have an untreated coinfection. With chronic lyme, you have to treat every disease the patient has to get them to wellness.
Sounds like you have become symptom free a number of times (this is the definition of remission).
So, you want to figure out what causes the lyme to get the upper hand on your immune system and make you sick again.
Some things that come to mind are:
--drinking alcohol
--smoking, even on occasion
--not doing the Burrascano exercise program (1 continous hour of weight lifting every other day)
--taking steroids (cortisone, prednisone, nasal sprays that are steroids, any immune suppressants of any kind)
You want to avoid anything that weakens the immune system and you want to do everything that strengthens the immune system. This is the best way to avoid a relapse.
Here is a quote for you:
"CERTAIN ABSOLUTE RULES MUST BE FOLLOWED IF LYME SYMPTOMS ARE TO BE PERMANENTLY CLEARED:
1. Not allowed to get behind in sleep, or become overtired.
2. No caffeine or other stimulants that may affect depth or duration of sleep, or reduce or eliminate naps.
3. Absolutely no alcohol!
4. No smoking at all.
5. Aggressive exercises are required and should be initiated as soon as possible.
6. Diet must contain generous quantities of high quality protein and be high in fiber and low in fat and carbohydrates- no simple carbohydrates are allowed. Instead, use those with low glycemic index.
7. Certain key nutritional supplements should be added.
8. COMPLIANCE!" (page 27 of Burrascano)
And another:
"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." (page 31)
"PROGRAM:
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." (page 32)
My Burrascano type lyme doctor told me I would NEVER get rid of lyme permanently if I didn't do the weight lifting program. I saw amazing progress as I struggled to do this 1 hour program.
I give the credit to the weight lifting for the fact that I got rid of lyme (and babesiosis and bartonella) 8 years ago. I am still symptom free to this day (even though I got another tick bite with bulls eye rash--was treated for 30 days by lyme doc). I even had steroid injections into my back twice, a few years after I completed my lyme treatment. Still, lyme has not come back on me.
When I used a daily nasal spray that was a steroid a few years ago (Nasonex), I started to get every illness that came along, one after another. I went back to the weight lifting and got no more illnesses.
So, I have seen the weight lifting program boost my immune system twice in my life.
This may be all you need to do to remain in remission from lyme for the rest of your life. I hope you take the exercise suggestion very seriously.
I think your 10 month remission was an excellent sign that you can overcome this illnees. Just look for the missing piece and don't give up! Wish you the best.
p.s. My lyme doc won't let anyone stop lyme treatment in winter or if winter is coming on. To do so could cause a relapse because winter is a stress on the body. So, keep that in mind. Stop treatment when symptom-free and in spring or summer only. (I got symptom-free in the fall. I had to stay on antibiotics for 5 more months, until spring.)
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Can you please outline this weightlifting routine for me? And by "aerobic exercises are not allowed," does that include walking? How about non-stressful yoga/pilates stretching? Is that allowed? I have a tough time handling anything aerobic beyond walking (this might explain why) but I'm trying to get back into an exercise routine and could use some advice. Thanks!
Posts: 90 | From Pennsylvania | Registered: Oct 2012
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Catgirl
Frequent Contributor (5K+ posts)
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posted
Everyone and everything alive has parasites. They are part of this earth.
One of the most profound moments of my life was discovering the world of chronic lyme. In this world there are things that no regular physician has been trained in (antiquated guidelines), so it is beyond difficult for them to comprehend or even remotely acknowledge it exits. Hence, the patient is ignored, given anti depressants or considered crazy or lyme obsessed.
Why the long story? Because once I opened my mind and realized I had chronic lyme, I also realized that just like lyme going under the public's radar, I really wasn't living in the sterile world that I'd been raised to believe existed for all of us in first world countries. It took some time but eventually, I realized that parasites were a huge part of my problem.
Everyone has parasites, but it's an imbalance that causes havoc on our bodies. So, like lyme, we have to knock them back, just like we do for our dogs, cats, horses, etc.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I was a patient of Dr. H for over two years and not once was parasites ever mentioned....
I was tested for parasites by one of my other doctors and nothing was found..not sure how accurate testing is. I was in remission for 8 months at one point as well
I am seeing my current LLMD in a week and am going to ask about treating parasites..
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
TF, thanks for the info, but no exercise allowed yet. When I am able to drive again, maybe that will be an indicator that I should start slowly. I used to, in former cycles, work out with weights/machine but one day at the gym put me 2-3 in bed!
Stress, whether physical or emotional, has always been the factor that has taken me OUT of remission. This last time, it was flying from DC to Hethrow (6hr layover) to Nairobi without sleep during flights or layover that knocked me out of remission.
I can't say that I was ever COMPLETELY symptom free because I knew I had lost some of my cognitive abilities, or lessened them. I thought this may have just been something I would never get back.
I had tried to go back to work part-time while relatively symptom free, but found that I just didn't have the level of competance that I used to...this was and is very difficult to cope with.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you have never been completely symptom free, then I would say you have never been in remission.
In a case like that, it would be well worth your while to treat for parasites and see if that gets you back to 100%. It may restore you to your former mental competence.
I had undiagnosed lyme disease for 10 years. But, I still got back to my pre-lyme state with good lyme treatment. So, it may well be parasites that are holding you back.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
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posted
kim, Dr. H just made his statement about parasites being the number one coinfection of lyme patients at the recent Lyme Conference held in late 2012.
I was very surprised to hear him say that, and I brought up the fact that he said it here on LymeNet. That statement of his has really caused a major interest in parasite treatment.
If you want to hear Dr. H say this himself, go to the ILADS site and watch the short free video of him speaking at the conference. They let you watch about 2 minutes as a sample of what the video will be like if you purchase it.
So, I believe this is new thinking for Dr. H.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Ellen101
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posted
I just brought this up at my last appt. According to my LLNP those that are usually having issues with parasites are those that despite every protocol they try they never see any improvement.
Also, for some such as myself a steroid inhaler is necessary in order to breathe. So for Dr B to say no steroids of any kind, that could be misleading if everyone followed it and down right dangerous.
Posts: 1748 | From United States | Registered: Dec 2011
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TF
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Member # 14183
posted
Kat, study pages 31-32 of Burrascano Guidelines to understand the exercise program he wants lyme patients to do. He addresses walking. He says it is OK to do briefly as a warm up.
He says to use weight machines (with hydraulics) since they guide you through the proper arc for the lift. If you go to a Senior Center or a gym, you can do a full body workout on about 4 machines--2 different arm machines and 2 different leg machines, such as leg press, etc. Don't put any weight on the machine, or just use the lightest weight (5 lbs.).
I just used our weight bench in our basement. I did bench presses (the bar was attached to the machine and guided my arms in the correct path), crunches, leg lifts (part of the weight bench), some back strengthening exercises (standing against a wall and bending the knees and holding that position), plus pulling down a weight we had on a pulley and also various arm exercises using very light free weights.
Please know that my major and enduring symptom for 10 years was extreme muscle weakness, so when I was told to lift weights for 1 hour, it was like telling me to climb Mt. Everest!
This muscle weakness would come on me overnight and totally debilitated me. So, I now know that this was a neurological symptom, not weak muscles. Just like it came, it would go. I would wake up one morning and be as strong as before. However, after 5 years of these episodes, I had the muscle weakness come and never leave me. At least 5 years of that until diagnosis. Then, 2 more years of that while I had very poor lyme treatment.
Nevertheless, I saw what it said in Burrascano about all of the ways this particular type of exercise works to effect healing, so I was determined to work up to a 1 hour routine.
My legs shook like jello just walking down the steps to the basement, so I had hubby come with me for moral support. We also hung a large clock there for me to time myself.
At first, I lifted just the bar with no weight on it. Same with legs, same with pulley, etc. and did maybe 2 crunches. I rested in between each, weak and panting. Still, in 10 minutes I was totally worn out and on the verge of tears. Still, I went down there every other day with my husband cheering me on.
I could not stand for more than a minute, hold the phone to my ear for more than 30 seconds, or hold my mouth open to have my teeth cleaned. I could only walk about a block.
But, as I persisted with these very, very light weights and calesthenics, it eventually began to get easier. I would do each machine or exercise just until it became really difficult/painful on my muscles. If that happened in just 1 or 2 minutes, then I switched to another set of muscles (from arms to legs, from legs to crunches, then to back, then back to arms, etc.)
I would do my little routine over and over until I was finally up to 1 hour of continuous, full-body workout. It took me about 3 months to get up to the 1 hour requirement.
After that, it was all joy as I began adding weight to the bars. This showed me that my muscles were gaining strength! After well over 10 years, it was unbelievable.
It showed in my everyday life also, which was pure joy! This weight lifting turned me into a normal person. I really give it a lot of credit for my recovery. When people ask me to tell them the meds and dosages I took, they think it was a simple 1-2-3. Like, wow, why didn't that work for anybody else? There was nothing complex or earth shattering about the medication protocol.
But, the truth is, the Burrascano protocol is a 4-pronged approach:
antibioitics supplements and herbs diet exercise (1 hour of continuous weight lifting every other day)
It takes all 4 prongs to get well. It cannot be done with meds alone.
And, yes, I was exhausted after the weight lifting and went to bed. That was why I did it in the evening, about 7 p.m. But, you know, it was a different kind of tired than the horrendous lyme fatigue ("fatigue" isn't even a good enough word for the lyme-induced, babesia-induced fatigue I suffered).
I was nowhere near well when I started doing this routine. But, I was working (a desk job). I could only walk about a block, and I dreaded rising up from my chair, but most of the time nobody would know there was anything wrong with me. You KNOW how that is with lyme disease. I had coworkers ride me and pick me up if I had to go any distance.
I followed the diet, etc. to a T. I was a very, very obedient patient. Still, my doctor said that I must have a very strong constitution to still be working with 3 diseases for all of that time. I did it by sheer will power--which I have a lot of.
Hope this helps you and many, many others whose doctors are leaving out this crucial piece of the lyme recovery puzzle.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF....so that explains why it was never mentioned to me by Dr. H because I was seeing him 2007-2009.
I made some progress..enough for me to stop abx for a couple years but now am now having some different problems.
Still have the horrendous fatigue daily but now I am dealing with a total decrease in mental stamina which exhausts me. I work a 5 or 7 hour shift which I really don't have a problem doing but when I get home I am whacked with such a severe mental exhaustion it is almost torture. I have to lay quietly for at least 2 hours.
I am beginning to think I just wasn't completely treated and that is why I am having different symptoms from the first time around. I was treated for Lyme...Babs..Bart...
I am seriously going to look into treatment of parasites... Thanx for the info and for clarifying when Dr. H made the statements..
Posts: 343 | From North Carolina | Registered: Oct 2008
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lymeboy
Unregistered
posted
Just to add - I have a Burrascano **edited out LLMD name** style doc, and we're going after parasites next month. I think it's really become a more standard phase of Lyme tx only recently.
Kim812, it does sound like you aren'tall the way there, but you are probably close. I hope you get the tx you need. I'll be sharing my progress w/ parasites in the coming months, and I hope you'll do the same.
posted
I don't understand why I have different symptoms now..it is almost as if I have a different illness. I will be discussing this with my doc on the 14 th and I will update you on what he has to say..
Posts: 343 | From North Carolina | Registered: Oct 2008
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CD57
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posted
"According to my LLNP those that are usually having issues with parasites are those that despite every protocol they try they never see any improvement."
well this is interesting. Ellen101 can you tell us more?
Posts: 3528 | From US | Registered: Apr 2007
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Ellen101
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posted
quote:Originally posted by CD57: "According to my LLNP those that are usually having issues with parasites are those that despite every protocol they try they never see any improvement."
well this is interesting. Ellen101 can you tell us more?
Not much more to tell...according to her those with parasites causing issues fail to see improvement no matter what different protocols they try..that is when she tends to suspect parasites may be interfering with progress.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Thank you, TF, for the link to the exercise protocol. I used to work out daily with aerobics and dumbbells (not machines). I will have to get back into the weight training part but make sure I do so only every other day.
Posts: 90 | From Pennsylvania | Registered: Oct 2012
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CD57
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posted
Ellen101 has she seen this to be the case in her patient base I wonder? Sometimes I wonder if the LLMDs are just jumping on the next bandwagon.....or they really know something we don't.
Posts: 3528 | From US | Registered: Apr 2007
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Keebler
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posted
- I don't think there is any "bandwagon" as the LLMD are continuing to study & learn. That's what we want and need them to do.
And I am very grateful that ILADS keeps us in the loop. So very grateful. They could be closed off but I'm glad to be included as they share their on-going education in the conferences.
Years ago, when lyme was named, parasites were seen right alongside spirochetes under the microscope by Willy Burgdorfer, PhD.
He thought it important then but was basically silenced. He was told him to just forget the parasite hitchhikers. It was hard enough to get experts to listen to him about lyme, let alone the full mix.
[My words cannot say it as I'd like but hope the message gets through.]
Now, those really wanting to know ALL about lyme (and what else goes with it) are taking another look back at that research - and also doing more study of their own.
As we shine more light on the complexity, it may be overwhelming to think about - or do even more things to address - but, if we don't acknowledge some of the facts around parasites that travel with spirochetes in ticks' bellies, than we are no better than the IDSA doctors who choose to just ignore it all.
If we ignore a piece of the puzzle, it does us no good.
And we have to know that the contents of each tick's belly is not like all other ticks' bellies, there is a lot to sort through. Not everyone with "lyme" has the same "lyme" so to speak. The complexites and variations must be considered. -
[ 02-03-2013, 03:13 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While this GU treatment is not lyme specific and would need adjustment for anyone with lyme, I post this mostly to show the relation of illness to "demons" in imagery of the past.
In ancient warrior times, these "demons" are now known to have been elusive, stealth infections - including parasites.
It's very close to home. Lyme is a demon of an infection. This article explains a great deal about chronic stealth infections in general:
Journal of Chinese Medicine - Nnmber 57 - May 1998
Driving Out Demons and Snakes
GU SYNDROME: A FORGOTTEN CLINICAL APPROACH TO CHRONIC PARASITISM
By Heiner Fruehauf, PhD, LAc -
Posts: 48021 | From Tree House | Registered: Jul 2007
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glm1111
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posted
Keebler,
Your view on the "Bandwagon" statement was so well put. Better late then never that ILADS docs are now waking up to this co-infection.
Just can't wrap my head around why this was so hushed up. I have read the "Gu Syndrome" a while ago, and find it so enlightening.
The reference to a "rotting tree branch" seems to fit as the description of the infected intestines.
Thanks for posting,
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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CD57
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posted
I don't understand why this was hushed up either. Doesn't Sapi talk about it?
Posts: 3528 | From US | Registered: Apr 2007
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glm1111
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posted
I e-mailed Dr. Sapi about a year ago in reference to the Filarial Worms she was finding in over 40% of the ticks she dissected.
I asked her why this was not being recognized as one of the co-infections of Lyme. Her answer to me was "It has to be published in a journal for it to be recognized"
I assume she was referring to the prestigous New England Journal of Medicine. In the mean time, people are suffering and dying. "What's wrong with this picture?"
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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glm1111
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posted
P. S.
Just had a thought. Is there more research money/grants available for studying borrelia then there would be for studying Filarial Worms which is thought to be a Third World Disease?
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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CherylSue
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posted
Thanks for all the info on parasites. TF, thanks for the detailed message on weight lifting. I rather walk (can walk up to 2 miles now), but my muscles need toning. I had spent too much time in bed and resting.
Posts: 1954 | From Illinois | Registered: Aug 2007
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