posted
I've seen different beliefs on whether or not LD can be completely cured. What do LLMD's generally believe? Thanks.
Posts: 3 | From Williamsport, PA | Registered: May 2013
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Just my pinion here - I'm not a doctor...
Some people do seem to cure it if they catch it early. It's a complicated illness without alot of accurate testing so it may be possible that other factors are involved. Could be parasites, heavy metals, mold/yeast/fungus, viruses, other pathogens or chemical toxins...
It can also encyst in various parts of the body & lay dormant. So, feeling better does not necessarily mean you are cured forever. I don't know how long Lyme can survive encysted in the body.
I don't mean to sound negative but this is my observation. Ticks are very small & we can also be reinfected...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I have been told that you can expect remission where your immune system keeps it in check like other viruses or bacteria that invade the body.
Seeing as there is no absolute testing to prove or disprove that spirochetes are in the body, I don't see how anyone can say the "cured" word.
Your body just becomes in control of what invaders can affect your health.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- First consideration is that lyme nearly never travels alone. Various other infections travel with it.
And the "conditions" or damage any of those can cause can be long-term (or not). Damage or changes can include all organs and systems, really. Lyme, itself, can cause DNA changes.
"Remission" is the term more commonly used regarding lyme and "lyme complex" (including whatever other infections or conditions in the mix).
Some have experienced good strong remissions with a solid enough run to consider themselves cured but most of them would also jump right on any important symptom were it to develop and address that head-on.
Technically, there is no way to prove lyme is gone. Most accept the (at this time) apparent fact that it can remain dormant and flare again.
More experience various levels of "remission" and it can take several cycles before it becomes more solid. Some really do go on to "restored health" and it is possible.
Just going back to lyme, BIOFILM and the OTHER forms are the keys to address during any treatment protocol.
JI do not have the endurance to compile all considerations here so stopping with just this - about the cystic form of borrelia b:
Topic: replication within cystic forms of lyme -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- DIFFERENT STRAINS of Borrelia b. also to be considered
Usually my note taking is better than this. The first couple sentences do not sound like how I talk. But I did not note who else may have said this. Perhaps some of this from the book and some from myself -- clearly below is from the book, where marked.
What many people don't know is that 10 strains of lyme cause only the lyme rash. They don't cause any lyme disease at all.
So, that's why a person can get a rash and just take a little doxy and be fine. They actually would have been fine even without the doxy.
On the flip side, if lyme is present just doxycycline can CAUSE lyme to become chronic as doxy pushes spirochetes to go into the cyst form.
Combination treatment - with very specific Rx to address cyst form as well, is vital to prevent that. Antibiotics do not do this.
Back to the rash but no symptoms: as mentioned above, that may be true for NOW but it can change. Still, maybe not.
Here is an exerpt from the book "Cure Unknown" by Pam Weintraub in which she talks about this aspect of lyme disease:
p. 342 tells how Ben Luft, infectious disease specialist and Daniel Dykhuizen, evolutionary biologist, working together at Stony Brook went out into the field collecting ticks and analyzing Borrelia.
A few years later, they had a graduate student travel the Eastern seaboard as far north as New Hampshire and south through the Carolinas collecting ticks infected with B. burgdorferi spirochetes.
p.343 �The Borrelia were duly isolated and compared for differences in their genes.
Eventually the researchers focused on twenty strains, each with a different version of the changeable OspC. Working with those twenty strains, Luft learned that six didn�t infect humans and ten caused only a rash.
Only four of the twenty could leave the skin to invade other tissue like the heart and joints or the brain.
The most virulent of the strains turned out to be the prototypical B31, the version of B. burgdorferi � ultimately isolated by Burgdorfer and Barbour at the Rocky Mountain labs in 1981.
The implications are profound.
One of the most important is that if just four strains of the twenty cause disseminated infection, then the roster of rash-based studies on the treatment of early Lyme disease, conducted from the 1980s to the present, would have to be reassessed.
Take a moment to ponder the simple math: It would be impossible to accept results based on the assumption that 100 percent of Lyme rashes can cause invasive disease when a significant percent cannot.
Some of the classic studies claim very high cure rates for early infection; yet if the causative strain were of the rash-only variety, then even orange juice would be a �cure.�
Are recommended treatment protocols truly curing most of those with early, invasive borreliosis? Or has noise from rash-only strains obscured less rosy results?� (p. 344) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- As I see you are new to LymeNet (welcome, but sorry for the reason to be here, of course), here are some key links set for your study file:
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.
"Some dr.s can pay the fee to join ILADS and not necessarily follow or understand all the guidelines with patients. They can claim they are ilads trained and NOT follow guidelines." (detail from a poster here who had trouble with a doctor who had claimed to be LL and an ILADS member but, after some time and money spent, it was clear he was not, not at all). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Education is key for anyone with lyme (or those who know someone with lyme). And most regular doctors, even Infectious Disease specialsts and goverment agencies are not much help but, rather, can be very dismissive & actually destructive to the lives of those with lyme.
Here are some excellent top lyme advocacy & educational organizations. Each has some differences or focus, but they are all fully "lyme literate" and ILADS "minded" -- bringing them all together.
- Not an exclusive or formal list. Just the top organizations that came to mind. Remember STATE and LOCAL lyme support groups, too. -
[ 05-10-2013, 05:39 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
- I mentioned some of the system and organ damage that lyme & lyme complex can do. For this reason, support is absolutely vital during treatment. Support is NEVER enough alone, though. Infections in all their cycles and forms must be adequately understood and addressed.
Key focus: Liver; Ears; Adrenals; Heart - for a start. (Some of these overlap to also help with neuro / brain protection but that's another whole matter and I don't have a handy links set for that.):
quote:The following are taken from Dorland�s Medical Dictionary and Stedman�s Medical Dictionary.
cure
noun. 1. Restoration of health; recovery from disease. 2. A method or course of medical treatment used to restore health. 3. An agent, such as a drug, that restores health; a remedy. 4. Something that corrects or relieves a harmful or disturbing situation.
Cure verb. 1. To restore to health. 2. To effect a recovery from: cure a cold. 3. To remove or remedy (something harmful or disturbing): cure an evil.
Based on this, yes, I believe Lyme can be cured. Cured has nothing to do with every single bacteria being removed from the body. We all have strep, chicken pox and other pathogens which don't make us sick. This is the goal with Lyme treatment.
I have not had a Lyme symptom in four years. I do nothing to stay symptom-free. Therefore, I believe I am cured.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
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Member # 12673
posted
- Excellent definition.
It's also important to note that there are various methods those who have regained health used to get there. Some have done the full combination pharmaceutical approach (usually with key support supplements and actions) . . .
others have employed various methods such a Rife machine. For many, it's a progression of various approaches over time. Some can't tolerate certain methods so are forced to think outside of the box. Some folks just find certain approaches work better than others - for them.
There is no one way that works for every person with lyme, other than - somehow - being certain to directly and thoroughly address the infections (in all their complexities), along with support.
If I recall correctly, SixGoofyKids made it through the homestretch with the BioPhoton approach in Germany (Bionic 880).
When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
LOW HEAT INFRARED SAUNA detail,
BIOPHOTON - BIONIC 880 (& PE-1) links, and
RIFE links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Topic: How did Burrascano cure himself? - Feb. 2010
ALSO in this thread, detail for how LL author, Pamela Weintraub reached a good solid remission -- and treatment paths for her entire family, too.
She also has a follow up book due out very soon expanding upon the previously released "Cure Unknown"
Transferring both of Pam's posts from that thread:
Post #36:
I just happened to notice this thread. Nowhere in Cure Unknown does it say that this is the first and last treatment for Lyme disease for anyone. This is a misunderstanding of the text.
Speaking for myself, I used the pulsing method ONLY AFTER four years of aggressive treatment for Lyme and coinfections. After those years, I was able to push symptoms back to remission but only while still on treatment. Off treatment, I relapsed over and over again.
The final, pulsing technique allowed me, finally, to get off antibiotics without further relapse --and I have been off them now for more than six years.
The pulsing was recommended by Doc B ONLY for the patient who had already been aggressively treated, and was now completely asymptomatic while on treatment, in other words, for the chronic relapser --a patient like me.
This is all spelled out in detail in Cure Unknown: Inside the Lyme Epidemic, published by St. Martin's Press.
Hope this all helps,
Pam Weintraub
post #38:
To all: Everyone is different. There are so many strains of the Lyme spirochete; alternate spirochetes; and various strains of coinfections, some of them still controversial or unknown. People have varied immune profiles, adding more complexity.
In MY case, I believe I was lucky to have classic northeast strains of babesia and Lyme, period... I was treated for babesia with mepron and zithromax over the course of a couple of months, and that really did get rid of my babesia symptoms.
I am convinced, and Dr. was convinced, that what continued to dog me for years vis-a-vis relapses, was Lyme disease and only Lyme disease. I had no response whatsoever to medicines for babesia or even other coinfections --eventually my Lyme was pushed to remission again and again with amoxicillin, but I relapsed whenever I stopped treatment, thus the trial of pulsing with ceftin.
This did the trick for me. It is an individual story and only an anecdote, which I state in my book. I state there, and I hold now, that it may have little meaning for others, but the book was my memoir, and that was part of my story.
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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phyl6648
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posted
I was told by the LLMD I was seeing that there is no cure but I could expect about a 40% improvement... So my answer is NO.. unless got in the early stages..
Posts: 1058 | From VA | Registered: Oct 2010
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TF
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Member # 14183
posted
My lyme doctor got rid of his lyme disease after having it misdiagnosed as fibromyalgia for many years. He gets rid of lyme for many people in the same circumstances.
I had undiagnosed lyme for at least 10 years and he got rid of it for me. It is now 8 years since I completed my treatment and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease.
I don't take any herbs, supplements, or medications. I am a normal person.
I have at least 3 friends who were cured after many, many years with lyme and other friends who were cured quickly since they got diagnosed within a year.
So, I think this speaks for itself. My lyme doc has a few patients who can't get rid of their lyme. Burrascano states that there will be some such patients. My doc gives them one week of antibiotics every month, and they live normal lives this way.
"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."
But, read all of the page because if the doctor searches for a cause, many times the cause is found and the person can get well. Open-ended antibiotic therapy is the last resort after every possible cause has been explored.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I have no symptoms. I'm finished treating. My son has no symptoms. He is still taking anti-virals. My daughter has knee pain when she goes off antibiotics. She's been treating since July 2011, within two days of a bite.
None of us had neurological signs, only arthritis, although I developed gastroparesis. It'gone. Get a good LLMD who treats agressively.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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