posted
I try and stay updated with news on Lyme by subscribing to important pages like LymeDisease.org on Facebook, typing in Lyme Disease in Google News section, as well as surfing some of the forums.
I'm not sure if many of you are aware of this, but just by plugging in Lyme Disease on Youtube, then clicking the filter button and clicking an upload date, you can get the latest news on Lyme Disease, as well as some patients treatment plans and experiences dealing with Lyme. Some of this is a lot more resourceful than the news, blogs or forums these days. And I must say, lymenet.org as well as some of the other popular forums, are starting to become dead in the last couple of years.
Right now YouTube is blowing up with Lyme Disease videos, 5 years ago, maybe not so much. Right now, new videos are popping up daily. So frequently, it's down right scary. The world is completely infected with Lyme Disease right now, but where is the media covering this disease??? I've seen decent coverage like in this video down below, but other than local news, national and world news isn't covering it at all.
Seems as though, YouTube is becoming a very valuable tool in fighting Lyme Disease.
My guess is, due to so many patients having Lyme Disease now, most aren't even bother blogging about it these days, but instead going straight to YouTube, vlogging instead. Much easier and quicker, considering some patients might have arthritis and neurlogical problems, typing may be too much. Videos seem to be the new thing nowadays. There seems to be patients even combining footage from LLMDs and their own experiences and treatment plan, then combining them into one video.
Point is, if you're looking for answers, Lyme forums, news, and blogs might not be the place you should be searching these days, YouTube may be a better resource instead... Good luck and keep fighting!
Posts: 108 | From Germany | Registered: Jul 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
There you are! Thought of you today but couldn't remember your name to give a shout out. (Already refer to one person as "what's his name", so trying to be more polite here.)
I read a study and all the details that made me think of you. Even wrote up the main points for folks so they'd know.
UGH! Couldn't find it just now because I forgot to post it! BUT, I finally did!
If you are treating Lyme this is important stuff to know...
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hiker- excellent question! I know, cause I had the same one!
In this study what was MOST important was the timing of the 4 repeated treatments. And the specific meds they used, but mostly the timing.
In the old days... yes, that irks me to say it... HA!...
Our docs, who've been at this a long while now, knew from basically testing it on patients, that repeated or long term treatment would help us best.
What they didn't have was acess to the detailed tools needed and ways to check it scientifically. We were all winging it back then, trying to do the best we could.
What I personally feel is important is that we knew pulsing worked, we just didn't know what drugs were best, and for how long we should take the meds before a break, and how long we needed or could take for the break, and how many rounds would be needed.
In fact, some docs said NO breaks and that was sometimes to the point of dangerous because the humnan body (for some) couldn't handle it.
Some docs felt the body needed a break and we needed to hit the spirochetes in one of their specific phases to kill them. (We had no way of knowing exactly what phase though.)
FINALLY, FINALLY, FINALLY we are moving forward with some answers in this area. This study wasn't done on humans, but that is the next step, so I am feeling excited.
Hopefully we can, now that we know these pile on combos of meds are no better than meds given individually, and we know the pulsing- a break between treating and how many treatments- works in the lab against Borrelia, get some more detailed answers.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Here is what Dr. B said in his treatment guidelines...
"It has been observed that symptoms will flare in cycles every four weeks. It is thought that this reflects the organism’s cell cycle, with the growth phase occurring once per month (intermittent growth is common in Borrelia species).
As antibiotics will only kill bacteria during their growth phase, therapy is designed to bracket at least one whole generation cycle.
This is why the minimum treatment duration should be at least four weeks. If the antibiotics are working, over time these flares will lessen in severity and duration.
The very occurrence of ongoing monthly cycles indicates that living organisms are still present and that antibiotics should be continued."
By definition, this category consists of patients with active infection, of a more prolonged duration, who are more likely have higher spirochete loads, weaker defense mechanisms, possibly more virulent or resistant strains, and probably are significantly co-infected.
Neurotoxins may also be significant in these patients. Search for and treat for all of these, and search for concurrent infections including viruses, chlamydias, and mycoplasmas.
Be sure to do an endocrine workup if indicated. These patients require a full evaluation for all of these problems, and each abnormality must be addressed.
This group will most likely need parenteral therapy, especially high dose, pulsed therapy, and antibiotic combinations, including metronidazole.
Antibiotic therapy will need to continue for many months, and the antibiotics may have to be changed periodically to break plateaus in recovery."
[THIS IS WHAT THE SCIENCE IS NOW SHOWING US OVER 10 YEARS LATER.]
"If treatment can be continued long term, then a remarkable degree of recovery is possible.
However, attention must be paid to all treatment modalities for such a recovery- not only antibiotics, but rehab and exercise programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, attention to food sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example)."
[THE NEXT PART IS IMPORTANT TOO...]
"Unfortunately, not all patients with chronic Lyme disease will fully recover and treatment may not eradicate the active Borrelia infection.
Such individuals may have to be maintained on open-ended, ongoing antibiotic therapy, for they repeatedly relapse after antibiotics are stopped.
Maintenance antibiotic therapy in this select group is thus mandatory."
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I read Burrascano's guidelines today again, as well.
I know personally, most antibiotics now just make me puke--especially the ceftins.
I know scientists are working on new synthetic antibiotics.
Patience is NOT my strongpoint!
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I am in that long term, high spirochete load, repeatedly relapses category. Many of us are.
The problem is we don't know which meds are going to do or address what, so we couldn't make a "plan".
Becauser of not knowing many people have been trying anything and everything else under the sun to try to get well. Most of it doesn't work.
Hopefully soon, with these new studies from Hopkins (the good guys, not the evil monsters) and studies like this one, we will be able to get treated long term if needed, be able to take breaks from the meds when they aren't doing anything FOR us, and eventually have it accepted in the medical and scientific world so insurance will pay the bills.
Don't know how much everyone else has spent on things that didn't work, but my total bills/losses are just over a million dollars now.
Having these answers means we won't need to try all of the other alternative treatments (and spend all that money) cause we will have something that works as best as we can get it to at least till something else comes along that is better.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Next question...
Will these meds used in this "plan" be able to kill all of the spirochetes and all of its forms that are hiding in joints, the brain, etc.?
My answer- I sincerely doubt it.
BUT... like what many of us who have been dealing with this for a long time are already doing out of desperation....
We can treat only when we feel it is needed instead of day in and day out. And we will know what meds will work the best, saving us time, destruction to our bodies and money!
In other words, we will be able to live with it, and not wonder every day if we will just continue getting worse or even die from it because there is nothing else left to do.
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hey Charlie
Thanks for the great links and info.
I must disagree however about your statement of Lymenet website being 'dead'.
Hands down, there is NO other place, anywhere, where Lyme patients can get instant acess to treatments, protocols, LLMD's, supplement products, patient's first-hand accounts, compassion and moral support. We are open 24 hours a day, we never close.
Lyment has saved many, many, many lives and will continue to do so. It is a respected forum and is run professionally by dedicated Lyme sufferers who choose to give back and help others. Thank you volunteers.
Also Tincup's MarylandLyme is a 1 stop website for all Lyme patients created out of years of hard work, dedication, and LOVE. Thank you Tincup 💚
I tried and found very little about LDN. I saw one researcher mention it. I started skipping over a lot of it. Maybe I missed a big discussion?
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