posted
I have noticed several posts in which people speak of relapsing symptoms or renewed symptoms after years of not having them.
Why does this happen?
Do the antibiotics, candida treatment, supplements not work efficiently to keep one symptom free?
If not, then are we at risk of spreading spirochetes via body fluids indefinitely?
This is a rather unnerving thought.
Posts: 47 | From wichita, kansas | Registered: Feb 2015
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Brussels
Frequent Contributor (5K+ posts)
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posted
The bad news: once you have borrelia in your body, you will unfortunately have it for life.
The good news: you may have borrelia in your body your whole life without even knowing you ever had it (meaning NO SYMPTOMS AT ALL).
There's a study done here in Switzerland by a lyme specialist who said the farmers were almost all infected (about 80% positive to Borrelia) but only 2 % of them had lyme symptoms. The GREAT majority did not develop lyme.
REMISSION means, your borrelia stopped bothering you, it went dormant, it causes ZERO SYMPTOMS.
Have you heard about herpes? It happens the same. MOst people were already infected, but only a few develop symptoms and these symptoms can be 100% active, or 100% dormant.
So don't be too annoyed. I'm lyme free for the last 6 years, but I have fought candida for 30 years, until I could put it dormant. It took me MUCH MORE TIME to make candida dormant than lyme.
I'm just 6 months candida free, still crossing my fingers it won't come back too soon.
Don't get too worried about the future, just treat your lyme disease as best as you can, change your eating habits, clean your mouth, teeth, environment, body as much as you can, and your body gets slowly healthy again. Posts: 6199 | From Brussels | Registered: Oct 2007
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do we have to worry others would become infected from us even after treatment?
thank you.
Posts: 47 | From wichita, kansas | Registered: Feb 2015
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Brussels
Frequent Contributor (5K+ posts)
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posted
That's the million dollar question. I would never give my blood to anyone, unless I want them to have the chance to get lyme.
But I know that most of the blood from blood banks is probably anyway contaminated with Borrelia and who knows what more...
Knowing that an incredible amount of people have Borrelia in their bodies but still do not develop the disease, I don't know what to tell you...
I am married, my husband never had lyme. He lives in tick land, like me and daughter. We were both very sick with lyme since about 2005, but husband never caught it from us. So far.
It's been 10 years already, so far so good.
He got his first tick bite this year 2015, and still didn't fall sick either...
Kind of hard to answer. I guess an open talk with the partner is a must. If all of you live in tick land, everyone is probably already exposed to Borrelia.
The safest is to use protection, but nothing is 100% safe anyway...
Today we know that mosquitoes also carry borrelia (simply because they bite people with borrelia!), but we are not sure they transmit borrelia.
The great majority of people in tick land is already exposed and contaminated with such pre historic bacteria... It doesn't mean they will necessarily fall sick.
When borrelia is dormant, fully dormant, I guess the danger is much lower than when borrelia is active.
Just think about herpes: when it's active, I would rather avoid drinking in the same glass, biting the same apple as the infected person.
But does a person with dormant herpes infect the others? Maybe yes, maybe not...
Blood transfusion in my opinion, is the worst to transmit lyme. Sex is known to transmit lyme, but when lyme is active. Dormant lyme, I have no idea.... Did you ask your lyme doc about that?
Posts: 6199 | From Brussels | Registered: Oct 2007
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no, I have never asked lyme dr as I have seen him twice only so far.
I will next time I see him.
What you said about your husband never becoming symptomatic is reassuring.
I am very careful that no one drinks after me etc.
I have been on the antibiotics for two and a half months.
I recently found a lump in one axillary breast node and have had breast changes I assume do to weight loss.
I've lost 15 lbs and still have brain fog...though muscle spasms are better.
I've read recently of studies on risks involved with antibiotics that are making me nervous.
I have two more months of antibiotics to fill.
Thank you for the enocuraging info you gave.
Posts: 47 | From wichita, kansas | Registered: Feb 2015
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Keebler
Honored Contributor (25K+ posts)
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posted
- You say that you have "read recently of studies on risks involved with antibiotics that are making me nervous." (end quote)
some of those "studies" are put out by the very people who want to prevent adequate lyme treatment. Find out who is writing what you read, first. I've never seen one that fully approach the topic of, well, then, how to get the medicine required with better safety?
This is what LLMDs and LL NDs are very mindful of, actually, and why it's never just this or that pill, it's a full protocol and life habit change over.
I also have some concerns about not just antibiotics but also all Rx as so many are very hard on liver - and the ears. Still, there are ways to mitigate those risks. And there are also other options, such as working with a LL ND (naturopathic doctor) for what else can help in certain places.
Undertreated lyme is far worse than long term antibiotics, though.
But - and a key point here - is that JUST antibiotics will not succeed. There are other classifications of Rx, and some nutrient and some herbals - and some protobiotics that are required.
Even with just Rx, antibiotics, alone, are set up for failure without the Rx that work on the various forms of lyme (cystic, etc.) with such Rx as flagyl, etc.
Please read about undertreated lyme can do, too, because it's important to understand how lyme works, in all its ways & forms. We must know the science of lyme.
And, coinfections often require other drugs besides just antibiotics, too.
I'm not sure who wrote those "studies" yet this is also why liver support, probiotics, best nutrition and habits are absolutely required for anyone treating for lyme, to help the body better manage treatment that is, essentially, life saving.
Jumping around a bit here but even if we are talking about MRSA or other antibiotic resistant infections, there are so many things the "scare" articles don't tell us such as many of the patients who take PPIs (proton pump inhibitors) are at greater risk. And they hand out PPIs like candy.
Also, not addressing candida. There are many ways that do work. Olive Leaf Extract cured the candida issue for me, when taken ahead of the antibiotics and all during.
Although, due to accessibility issues, the longest I was on abx was 2 full months at the longest . . . for decades earlier, I would require them on and off and candida was a major problem that no doctor ever addressed.
You say that you "have two more months of antibiotics to fill"
While it's always hard to think that it may take longer - even after such an ordeal so far . . .
treatment is likely to take far longer than that. Unless one is currently symptoms free (as treatment should go for a full two months after recovery), there is no way to put an end date on treatment. It evolves. There may be different approaches but it is rather complex so it keeps us on our toes. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Back to your main question:
"why reoccuring of symptoms?"
Inadequate treatment
Inadequate assessment of coinfections / co-factors
Inadequate support measures
and / or expectations that are not in synch with the complexities of the situation.
When we better understand how lyme (and each of the coinfections that are in our mix) "work" and understand better how to care for ourselves, hopefully, this will help provide for a good long remission & recovery. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
Dr. Burrascano's Treatment Guidelines (2008) - 37 pages
The full document is vital to understand as a template, a starting point . . .
First, go to page 13, the last paragraph, (stressing the importance of individualized protocol):
" . . . There is no universally effective antibiotic for treating LB. The choice of medication used and the dosage prescribed will vary for different people based on multiple factors. . . ."
[and further into that paragraph (and this can be read for whatever method is used - it must be strong enough, long enough, etc.]:
Bacteriostatic vs. Bactericidal consideration
" . . . Doses found to be effective clinically are often higher than those recommended in older texts.
This is due to deep tissue penetration by Bb, its presence in the CNS including the eye, within cells, within tendons, and because very few of the many strains of this organism now known to exist have been studied for antibiotic susceptibility.
In addition, all animal studies of susceptibility to date have only addressed early disease in models that behave differently than human hosts.
Therefore, begin with a regimen appropriate to the setting, and if necessary, modify it over time based upon antibiotic blood level measurements and clinical response. . . ." (end quote)
Page 27 - SUPPORTIVE THERAPY & CERTAIN ABSOLUTE RULES for self-care -
[ 09-12-2015, 03:48 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- How taking just doxycycline (or any antibiotic) can cause Chronic Lyme:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- The importance of having a truly "educated" doctor also ranks high when seeking success over tick borne disease.
Looking back at some of your recent posts, you wondered if a LLMD was really necessary. It is.
Are you working with an ILADS educated LLMD or LL ND? Hope so. But, by the sound of what you write -- you only recently started antibiotics and you say that you have just two more months to go . . . it does not sound like you have a true LL doctor.
If you have other questions about why this matters, be sure to see the replies here where you asked that question:
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
CONTINED STUDY is essential by any doctor, especially a LLMD or LL ND.
Whomever you select, be sure they attend current ILADS conferences or otherwise keep up with all those working in this field. Be sure they know the work of
Garth Nicolson, Alan MacDonald, Eva Sapi, Burrascano and all other researchers who strive each day to learn more. It's one thing to look back at all the links here for a start but there is so much more to all this.
And any doctor who is treating anyone with any tick borne infection really must keep in touch with what all the others are working on in order to be a good doctor to their patients. -
[ 09-12-2015, 03:36 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- BLOOD / TISSUE DONATION
Blood donation was mentioned by Brussels who wisely says she "would never give my blood to anyone."
Right now, be sure to go to your drivers license or other documents where you may have made arrangements to be a blood or organ donor. Put a note on those that this needs to be changed - so that you are reminded come renewal time -- or go by the DMV as soon as you can.
The Red Cross will not allow donations by anyone who has ever had Babesia (a tick borne infection that often travels with lyme). Ever.
They do not have this distinction for lyme but they should, IMO. Not just about lyme but also there are so many other infections that travel with lyme and so many can go undiagnosed.
So, it is best to do whatever needs to be done so that your "next of kin" know about this and there should be no tissue donation - not even eyes.
The person who would make such final arrangements must also be on board with this and you should be sure they will follow your wishes.
Since there is no known cure for lyme, so much yet to learn about how long it can stay in the body, etc. it would be so sad to pass this on to anyone. Those getting tissue donations are placed on drugs that lower their immune function so would not be able to fight off infection.
There are other ways to give back and help others if you have the time, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- You ask: " . . . are we at risk of spreading spirochetes via body fluids indefinitely?"
Well, it's not like someone in your casual circle could "catch" lyme from you. It just doesn't work like that. Even if someone drinks after you (not a good idea for so many other reasons) lyme is not transmitted that way.
With intimate relations, perhaps and I wonder about those with bleeding gums even with kissing but, really, this is not transmitted via saliva.
Some spouses / partners have lyme in tandem but it's not always clear if one transmitted to the other or not. Could happen, though, so safety measures can be discussed.
Lyme and other tick borne infections can be passed from mother to fetus during pregnancy, though - and through conception via sperm, perhaps.
And that is really important for anyone considering parenthood -- or looking back at one's own family puzzles. -
[ 09-12-2015, 06:30 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Back to the questions of one of antibiotics' unwanted feature, I found that this worked wonderfully regarding candida squashing.
And, if you wonder about other ways to treat that are "strong" enough, see the "How to find a LL ND" thread here, too. BioPhoton treatment or Rife machine might be good to consider.
Hubby never got from me, but who knows in the future...?
As for lyme relapses, I could always make all my tick born infections go FULLY dormant, no more symptoms... But it lasted only about 4, 5 months, and then symptoms returned.
The only thing that stopped the relapse cycle for me and for my daughter was photon treatment with borrelia nosodes. At least, the time span of relapses changed from 'weeks lyme free' to 'years lyme free'.
Lyme free meant ZERO lyme treatment, with absolutely no lyme symptoms, no coinfection symptoms.
It feels exactly like you NEVER got lyme before.
My daughter goes to a new school now, but even in her older school, no student knew she ever had lyme, arthritis, or whatever. She's been in full remission for 99,9% of last 6 years, fortunately.
She got 2 or 3 days relapse, with symptoms, during the last 6 years. We treated her with photons again, then it goes dormant for more a couple of years.
She's been constantly bitten by ticks, so it COULD be that she got a new infection that lasted one day. If we treat her on DAY 1 OF SYMPTOM (in her case is knee pain, arthritis), DAY 2 goes SYMPTOMLESS!!! She'll then have 2 years of no symptom at all.
I think I never really got lyme again. Maybe I treated once or twice with photons again, just in case (to be sure it won't come back).
That is for me, the ONLY warranty against lyme disease, as we get constantly bitten.
Had I tried other treatments, but no photons, I think I would be STILL fighting against relapses. And so would my daughter. My daughter's relapses were ALWAYS handicapping, LITERALLY speaking.
She would stop walking due to pain, and it took just a few DAYS after relapse for that to happen.
It has been ALWAYS like that. That meant, she had to retire from her normal life 100% to be confined home or in hospital. This happened on and on again BEFORE photon treatment.
For us, it was just photons + nosodes that stopped the hell of relapses. We didn't get healthier from that treatment: it just made borrelia dormant for much longer time than with other treatments.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Keebler
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- Brussels,
Thanks for clearing that up. Yes, it can be sexually transmitted.
Maybe the way I worded it was too fuzzy and a "maybe" was intended to be with any certain couple - not that it is not able to transmit sexually - so I changed a word or two but glad you posted on this important matter.
It's hard to trace how someone becomes infected and there are some couples where the other never becomes ill. So, yes, it can but it may not necessarily be the case for all couples or partners.
Where I said "safety measures" should be discussed. To be clearer, the term might better be "practice safe sex" if one partner has lyme / TBD and the other does not.
Be mindful of bleeding gums (mouth tissue issues can be rough with lyme / TBD). It's probably best to forego kissing if one's gums are bleeding anyway.
Certainly, discuss with one's LLMD about whether partner should be assessed, etc.
Speaking of assessing / treating both partners,
For candida, especially - both partners should be treated and kissing & oral sex needs to be considered with candida as well. Even if one partner does not exhibit outward signs of candida, they should be a probiotic regimen where the other partner is on any kind of antibiotic treatment. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- ohdeer,
here's some detail about the treatment Brussels talks about:
posted
The abstracts I read were not about Lyme , rather, about antibiotic use and slight increase for certain cancers.
I appreciate the comment reminding that many rx have risks that people take.
I appreciated the comment that Lyme not fully treated could be worse than risks of antibiotics.
I think the reason that I have just two months antibiotics left to fill is because I only had the Lyme just under a year before I started treatment and we think it is Lyme without coinfections.
And because I currently don't have a brain left to treat....lol... just kidding.
Posts: 47 | From wichita, kansas | Registered: Feb 2015
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