droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
The CDC is absolutely wrong on everything lyme disease and is responsible for many deaths and ruined lives.
That said, I talk to so many of my Dr's patients and not many are better after long term antibiotics.
I've also been here a few yrs and haven't seen many people come and go that did antibiotics. Now the CDC and most of medicine believes that lyme cannot be chronic.
Is it possible that they are right about one thing and that it's the sort of thing that tears through you and if not treated after a yr or so, cannot (in most cases) be cured with long term antibiotics?
I know most people that get better are using multiple strategies so is it possible that those strategies are the thing that's keep their immune system fighting?
I only ask because the only thing that has gotten me to feel better is multiple detox, mitochodrial support, sleep, prescription drugs, etc...
I just ask because I have to look at it and call it like I see it, despite hating the CDC...Can they be right about long term antibiotics not working?
I mean how many people have gotten better by addressing each co infection one by one and now back to 90% or better.
Most I've seen that are better like Ralphi here, either addressed it early or used a different strategy like mold remediation or rife or whatever....
It's hard to admit because the CDC has destroyed so many lives but I don't see persisting infection. I see initial infection and then allergies, ruined stomachs, encephylitis, arthritis, etc....all after initial(unadressed infection)
I had yrs of IV and can't say that it did a whole lot of anything.
posted
My personal opinion is that PLDS does not exist. I believe in the ongoing infection theory.
You may or may not know that my husband died from complications of chronic Babesia.
I actually had a phone discussion yesterday with an IDSA I.D. doc who said that it was improbable but not impossible that my husband had chronic Babesia for 12 years.
We discussed the medical literature and hubby's test results - Babesia or a similar blood borne parasite seen on a blood smear - the report was not issued until the day he died.
Even though hubby had had 2 recent tickbites (5 1/2 and 3 months prior to death) I am convinced that while he may have been reinfected or infected with a new strain he also had a chronic ongoing infection.
The pathologist at Columbia University in New York is supposed to call me later this week - it has been over 2 years and they are just now getting around to examining Steve's brain. Do not know yet what they have tested or found.
Personally I expect them to find both lyme and Babesia. I will be shocked if they do not find both.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I agree with LymeToo. I think that supplements and herbs are almost equally important to antibiotics. Repairing the damage and treating symptoms helps the body fight the infection.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Im sorry but what isPLDS
Droid im pretty sure in the last few years thinking about tx has changed alot
Also when "long term abx" can mean anywhere from 11 days to forever its hard to know what simeone means when they say it
Some researchers defend 4 weeks as long term when that just makes us laugh
I cant site the studies but i know they are out there. Bb and maybe other bugs are resistant in many very sophisticated ways
So we see many not getting well on abx
I believe it seems abx are much less resistant to herbs,rife etc. Otherways of txing. The abx havent figured out how yet
Sorry i dont have studies but i know i have read stuff about this. Maybe alan, eva,dr h....
Bottom line: many bugs re too smart for abx
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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poppy
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Member # 5355
posted
When I go off abx, I get worse. When I am on them, I get better.
Not buying this post lyme baloney.
I do think it is possible to have some permanent damage done during the disease that would not respond to antibiotic treatment. If your joints are destroyed from lack of early or adequate treatment, abx will not bring them back.
Posts: 2888 | From USA | Registered: Mar 2004
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For years hubby treated low dose and one infection at a time. Saw little or any improvement.
But when he got to the point where he could tolerate multiple meds and treat multiple infections at the same time - at that point he could tell that the meds were actually working.
During his 14 month super aggressive babs treatment (before the 2 new tickbites) he tried pulsing malarone 3 times. Each time within 2 or 3 days his symptoms would start returning. For him it was obvious that he had an ongoing chronic Babesia infection.
Lyme is a little harder to monitor in the same way as it has a longer replication cycle (approximately 28 days).
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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TF
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Member # 14183
posted
Aggressive antibiotic treatment (the Burrascano protocol) got me and at least 5 of my friends cured.
These people had had lyme for 50 years, 10 years, 3 years, etc. (I can see that I went undiagnosed for at least 10 years.)
But, as Burrascano says, it is not just antibiotics. It is also a certain type of exercise (weightlifting for one continuous hour every other day) to boost the immune system, supplements, and diet. The exercise, supplements, and diet are essential also. Many don't do the exercise requirement, or the diet requirement, etc.
I have seen so many people get rid of lyme that I truly believe in the Burrascano protocol. It is the protocol that got the top lyme doctors well, including Burrascano and the lyme doctor that cured me.
So, with so many people getting well, I have to believe that one of the problems is too many lyme doctors who are too afraid to treat aggressively. They put people on low doses, or just one antibiotic at a time, etc. (I understand their fear of persecution if they follow Burrascano.)
Otherwise, how could I know so many people personally (I am not counting people I know only through LymeNet or the Internet) who got rid of these diseases?
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, can you describe what exercise is done for 1 hour continuously? I get to 20-30 minutes max doing weights with rests between sets.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You exercise each muscle group a few minutes. You do arms, chest, back, abs, butt, and legs.
So, come up with a routine and do it over and over again. For example, in my basement, I did the following:
a number of bench presses (start out with an empty bar that you can lift easily, or very light weight on it) rest in between each lift if you have to,
a few crunches lying on the bench (for abs),
some leg lifts using light leg weights
then, for the back, I stood against a wall and did a halfway knee bend and held it for a count of ten; do that a number of times,
then, rigged up a pulley and pulled down a light weight a number of times,
then some hand weights doing various lifts with them,
and then start all over until you have done it for an hour.
You can also do push-ups, half push-ups or other types of calisthenics.
If you are at a gym with weight machines, just go from machine to machine and do about 8 different types of lifts for a full body workout.
Do the workout over and over for an hour.
Be sure you are exercising all of the muscle groups.
As the workout gets easier, then add more weight and do it faster, more repetitions, and less resting in between.
You will be thrilled when you see your progress.
When I first started, I was so weak that all I could do was about 10 minutes. I could barely walk down the steps to the weight bench. So, this was like climbing Mt. Everest for me. But, I persevered. It probably took me 2 months to work up to a full hour routine.
Read all that Burrascano says about this. You may need to rest 5 days in between workouts at first. But, he wants you to modify your routine so that you can do it for one continuous hour.
At first there just was no routine I could do for 1 hour. I could only stand for 1 minute and only hold the phone to my head for 30 seconds. So, I did what I could and worked up to the hour.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Phoiph
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Member # 41238
posted
I believe that some people carry ongoing infection even after antibiotic treatment, and some have an ongoing, cyclical inflammatory response that continues to produce symptoms that can be mistaken for an ongoing infection. Others (including me) had (or have) both.
The truth is, antibiotics are more effective when the infection is caught early for a reason; the immune system is still strong and organized enough at that point to fight the majority of the battle.
At best, antibiotics can only reduce the level of infection; a functioning immune system is still required to become well and stay well.
Unfortunately, over time, antibiotics will weaken the immune response, which is part of the reason why some people are dependent on antibiotics and relapse when they go off...their immune system is not strong enough to strike a balance on its own.
I was not one of the people who became well with the Burrascano protocol, although I followed it closely for almost 1 year. Not everyone's system can handle years of aggressive antibiotics, and I became extremely ill and homebound for 5 years after that protocol. (I eventually became 100% well via mild hyperbaric, diet, and graded exercise.)
In my opinion, the future of chronic Lyme treatment will focus more on immune regulating and restoring strategies, as it is so much more complex than "killing bugs" by the time things go chronic.
A related area in great need of focus (and I suspect may be key to curing Lyme) is breaking the complex neuro-inflammatory cycle that is a common denominator of many chronic diseases...
Posts: 1888 | From Earth | Registered: Jul 2013
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posted
I think you try to put together the best program that will work for you.
For example, oral clindamycin worked for me for 5 years, to take down all fibro pain, and that's saying a lot. I became functional again.
Then it didn't work anymore. I'm now getting through on anti-inflams, like turmeric, mangosteen juice, noni juice, grapeseed extract, plus other supplements that address various aspects of the whole picture, including thyroid supplementation. I don't think there is any one approach to healing.
And remove the P from PLDS!
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
TF I really want to work out, but I still have active mono infection. Is it safe to exercise while dealing with that too, or is it just going to put me back in the basement?
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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I just saw a paper (scientific one) that clinically showed vitamin C IV drips can reduce mono (Epstein Barr) activity. Personally I have had IV drips on an as needed basis and they work very well for the flu/fatigue feeling.
Activation of Epstein Barr is a part of Lyme disease because the immune system becomes compromised. Dealing with viral infections like EB becomes important. I had mono prior to becoming infected and it seems to be a key component of my illness-so managing that becomes important.
Posts: 172 | From ohio | Registered: Feb 2010
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poppy
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posted
I think it is true that chronic lyme is a neuro-inflammatory disease, driven by infection. However, not so sure we will ever be able to manipulate the immune system. This is very complex and what is now being done with remicade, etc in so-called autoimmune diseases is a very blunt instrument with bad side effects. Crude approach, in other words. In no way ready for prime time in those diseases or lyme. Sad to say.
Posts: 2888 | From USA | Registered: Mar 2004
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Phoiph
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posted
Poppy...
I wasn't referring to drugs such as Remicade, etc. to treat neuroimmune conditions, including Lyme; on the contrary. It is already being done with more benign therapies that likely won't gain attention since they do not include substances which can be patented, and therefore make profits by big pharma.
As one example, here is a link to an article written by an MD (with Lyme and other conditions) who has treated herself and had great success with her patients:
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Dr. B's approach works, no doubt. So that in itself says "chronic/persisting" infection.
The IDSA agrees we are all sick but says the cause is a phenomena known as PLDS- saying that after initial infection,10-20% remain sick but the cause is unknown...which is an astoundingly dumb statement. They know the CAUSE: Initial infection that triggers dormant viruses other infections. Whether it persists or not is the only question.
I don't doubt Bea at all and honestly think the hospital is responsible for her husbands passing. I definitely think there was a chronic situation that was handled by stupid ID Dr's.
Phoiph has something when he/she(sorry) says that both chronic and non-chronic situations happen.
I see a regarded Dr. who's already been been mentioned in this post. I don't want to say the name specifically because of my perceived low success rate after talking to other patients of this office. It doesn't mean this Dr. doesn't get people better. I'm only saying that I talk to a sick portion of his patients who have a support group and very few are getting better.
Two out of about 15 people of a support group have gotten better in 2 yrs. Both had dropped this Dr, and gone to the Dr. Shoemaker &/or Brewer (idk if I can say those names but their protocol is bile toxin removal/mold)protocol and within weeks were better. So I have a valid reason to ask this question. I'm sure long term antibiotics are the answer for some, not for others.
There has to be a better answer that ILADS puts forth than "long term antibiotics and multiple immune support strategies" AND they have to ween out the Dr's who treat people who have $ then find a new coinfection as a reason why the previous treatment didn't work.
I feel bart in my system. It's relentless. Everything points to it and points to it being chronic. I also know I have yeast/mold issues.
I just had my two best months by juicing and enemas, no abx. I've suggested it to many on here, Youtube, Twitter, Facebook...and I get "Hell no" or "It would never work" or "I refuse to stop eating gluten".....WHAT?!? You've been sick this long and haven't addressed the most basic thing?
I think that there are a lot of sick people that think they still have lyme and are fogging the issue. Recently, Dr. J's approach starts by removing non-working organs(mainly gall), and that seems to help a lot of his patients. Leading to the fact that maybe it's not lyme after a certain time. It's a sludgy gall bladder or an inefficient colon or slow digestion...Caused by initial infection.
Thank you Phoiph for that link. I've wanted a soft chamber for a while now. I alson know a girl with bad babesia who is better now on soft chamber/supplemented oxygen therapy(and other immune support issues)
Thanks TF also because my one regret was not working out with weights while on heavy dose antibiotics and it clearly says in Dr. B's protocol...You must workout anaerobically. I am now but was wayyyy to weak to at the time, but apparently you toughed it out. I wished I would have.
Without reliable tests no one really knows exactly what infections they had to start with and which ones are chronic persistent infections.
Have been reading the Weisbren book describing 51 cases. It is very obvious that lyme complex is a better description than chronic lyme.
I think the Dr H book with the 16 issues is a good starting point to address either damage from infections or other ongoing issues. In reality hubby pretty much looked into all of those things with various ACAM doctors before we stumbled onto tickborne diseases.
I do think there is probably a genetic component that is not fully understood as to why some patients get sicker or stay sick longer. But then without testing it is also impossible to know for sure that those people were not just the unlucky ones who were infected with more virulent strains of lyme or other coinfections.
Interesting comment you made about non-working gallbladder. I am sure hubby had issues with his gallbladder, but we could never get a G.I. doc to order testing.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I agree with what some of the others are saying about antibiotics only being one piece of the puzzle. I know folks who've gotten better on all-herbal protocols too, so right now there's not one-size-fits-all approach.
I do think that for an extended remission to happen you have to address biofilms in some way (herbals or Rx or whatever else is out there), which in my experience many LLMDs do not.
Also, getting the immune system functioning again and KEEPING it functioning once you're feeling better is crucial.
Posts: 330 | From TN | Registered: Sep 2011
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MichaelTampa
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Member # 24868
posted
TF -- on the exercising, I have been doing once per week, and notice that is helping ... do you think every other day is important? That is difficult from the time commitment, given the resting that is required afterward.
Also, I have not been doing quite the variety of getting every muscle group. Some are harder to rig up at home, and also, really trying to strengthen my one shoulder, as I have had shoulder pain, so many of the exercises have been chosen to fit that dual purpose. Is there some reason why it would be important to get all the muscle groups? (Are we trying to strengthen the immune system generally, or really trying to bug the bugs in all the muscles?)
...feel free to answer either from personal experience or anything you've read such as from the Dr. B. campe, either perspective is appreciated...
Posts: 1927 | From se usa | Registered: Mar 2010
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TF
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Member # 14183
posted
Yes, I think every other day is important. If you do the exercise requirement once per week, then you are boosting your immune system only once per week.
If you do it every other day, then you are boosting your immune system every other day.
So, as you can see, you will recover much faster if you do the weightlifting every other day. If you make your recovery a priority, you will get the best result.
However, if you need more time for your body to recover, then you cannot force yourself to do the weightlifting for 1 hour every other day.
Study Burrascano's explanation of everything the exercise is thought to accomplish. It is on page 31:
If you only do it once per week, then you are only getting these benefits once per week. Some benefits believed to occur are: driving the antibiotics further into the tissues, killing lyme germs with higher body temperature, etc.
Regarding exercising all muscle groups--that is the ideal. However, you have to work around your shoulder problem. I don't think that will prevent recovery.
If you want to get your body back to normal condition, however, then exercise all of the muscles so that they get back to normal. In your case, exercise all that do not involve that one shoulder.
I encourage you to take the time necessary to rig up things to exercise the various muscle groups, or get a friend to help you. Study exercises on line to come up with something. There may be calisthenic exercises (not requiring any equipment at all) that will do the trick.
So, try to not leave out too many muscle groups. Do this by doing at least 2 different arm exercises and 2 different leg exercises. Plus the crunches for abs, the bench press for chest, and one or 2 back exercises.
The most rewarding part of my lyme treatment was seeing my progress in my weightlifting workout. It made me so happy, I cannot tell you. You can visibly see yourself getting better and that is a great mental boost.
It makes up for the set-backs or perceived set-backs (herxes, etc.) that occur during treatment when you attack different diseases, change meds, etc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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droid1226
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posted
I'd like to see a correlation study from natural bodybuilders and illness. I Googled it. Couldn't find much.
My friend who has kept me alive and taken me to Dr appts when I couldn't walk, is an avid weightlifter. He never, never gets sick...ever.
I've known him since grade school, he's worked out always....I've never seen him with the flu or a cold. Hmmm..Idk.
I was always a big weightlifter until about 3 yrs before I got sick. I began an office job and became sloppy.
How great/terrible/ironic would it be if that was the missing key in a lot of lyme cases? It's impossible for some sick people I know. I know at my worst, there's no way. But at my best, it would just exhaust me and make me really tired and sick.
I just had my two best months by juicing and enemas, no abx. I've suggested it to many on here, Youtube, Twitter, Facebook...and I get "Hell no" or "It would never work" or "I refuse to stop eating gluten".....WHAT?!? You've been sick this long and haven't addressed the most basic thing?
-
Exactly!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Phoiph
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Member # 41238
posted
A quote from Burrascano's theory (p.31) as to why exercise is important for recovery:
"...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..."
Mild hyperbaric = oxygen perfusion of the tissues
Posts: 1888 | From Earth | Registered: Jul 2013
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quote:Originally posted by seibertneurolyme: My personal opinion is that PLDS does not exist. I believe in the ongoing infection theory.
I am not so sure. I do believe in ongoing infection. However, I also believe that having the bacteria in my nervous system for 9 years most definitely caused problems, and I don't know what is permanent or temporary.
I have new symptoms since having antibiotic therapy, is it my body reacting to the dead bacteria still inside, or live bacteria?
I don't think we will know until a test is developed.
-------------------- Sick since 2000 Bulls eye 2005 Dx Babesia, Lyme 2014 Posts: 247 | From New Hampshire | Registered: Aug 2014
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klutzo
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posted
Seibertneurolyme,
I feel strongly that the missing genetic component is the 1298 and 696 MTHFR genetic mutations which make removal of toxins from the body almost impossible. Not much is more toxic than Borrelia.
I have all kinds of organ damage, any of which could kill me at any time. I may still have an active infection, but I sure don't need one any longer to take me out. Now, it's just a race to the finish line.
I am so very sorry for your loss.....I've not been here in quite awhile and did not know.
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I know this is an old post but I have been thinking quite alot about it.
Droid - you mention that the only people you knew who got better did the Shoemaker protocol - that got me really thinking!
And then it was mentioned by some that exercise was a necessary part of their recovery - that got me really thinking as well!!
In thinking about this, the Shoemaker protocol is a multi-level approach with several steps (I think 11) that are to be followed in successive order. Some people are totally recovered by step 3, some step 5 and so on. Each person is to continue on down the list of steps until they reach recovery (some sooner - some later -some ongoing if the infection is not resolved).
One of the steps, is to restore VEGF. There is a prescription product that can do this, only when the previous steps have been completed.
Another way to restore VEGF that works for some patients is to slowly build up an exercise routine and this for some patients is enough to cure them of the biotoxin illness that 20% of people who have Lyme disease get. I believe this would apply to after the lyme infection is in remission/cured - that VEGF could be restored through exercise.
So this all could make sense as to why TF and sixgoofykids can attest to exercise being a huge part of their recovery and why Burrascano mandates it.
For some though, exercise is not enough to repair VEGF levels and on the Shoemaker protocol they must take prescription remedies and continue on through subsequent steps.
I write my thoughts based on what I have read on Shoemaker's work (and the practitioners who are trained in his protocol) and what I have read about various people's experience with exercise as well.
As far as bodybuilders not getting CFS. I don't think that is the case across the board. My brother has been bodybuilding for years and has CFS. Bodybuilding is about his one activity that he can tolerate and he is super fit. It hasn't gotten rid of his symptoms for him.
After thinking this all through, I am in the process of booking an appt. with one of the Shoemaker trained doctors. My LLND has prescribed Cholestyramine to bind toxins, but she doesn't run any of the biotoxin tests and is not trained per the Shoemaker protocol. So in theory, I could take all the Cholestyramine I wanted and exercise as well and still suffer from biotoxin illness (or PLDS) as my body could be the type to complete to need to complete further steps in order to normalize itself to wellness.
It would also explain why Christa Vanderham (her husband made a video about her recovering from Lyme Disease) would feel better after just cholestyramine (she had eliminated Lyme after several years of antibiotics but still had symptoms persist). From what I have gathered, some people feel better with just completing biotoxin elimination. Some people don't and have to progress on through the steps.
I am hopeful as I venture down the path of pursuing the Shoemaker protocol that I may find wellness again but also realistic that it may take a l-o-n-g time or that I may be dealing with some type of chronic infection that doesn't resolve even with the Shoemaker interventions.
I am pursuing this treatment after actively treating Lyme, Babesia, Bartonella for several years with aggressive antibiotics (although not IV) and Buhner herbs. By aggressive I mean high dose and always covering the 3 forms of the lyme spirochete. I have had all my metal fillings removed and noticed know difference in symptom picture so I am good there. I have supplemented nutrient deficiencies and this has definitely eliminated some but not all my symptoms. I went gluten free for an entire year and it didn't change my symptoms. I also take toxin binders and have done coffee enemas and have found them helpful but have not totally reduced all symptoms with them. I am also treating my MTHFR mutations.
I have done all these things but still feel there is a 'glass ceiling' so to speak with remaining symptoms and am trying to break through it. So I am seeking a Shoemaker specialist and parasite specialist to hopefully but the final nails in the coffin of Lyme disease and company.
[ 03-11-2015, 02:46 AM: Message edited by: SLML ]
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