LDN backfiring with Lyme disease - forcing spirochetes into "L" and Cyst forms?

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adamt
New Member


Date Joined Sep 2009
Total Posts : 10
   Posted 9/10/2009 4:36 PM (GMT -6)   
Hi everyone,

I was diagnosed with MS in 2002 when i was 17 after an MRI scan showing lesions in my brain and lower spine. I also had a lumber puncture but i was never told the results - i asked my Dr for the results recently.

I had the typical MS systems of bad balance, leg weakness, and bladder frequency/urgency/control problems.
But also had other symptoms too, I had an involuntary twitch in my eye, although i could control it sometimes,
I also get urgencies to make noises but only in discreet environments, and i can fully control this.
At the age of 14 lost lots of weight and appetite vanished, and has never returned since, and since that age have turned from being stock /slightly chubby to stick thin. i find it very difficult to put weight on, to do so i have to seriousky over eat.
At the age of 9-10 Eczema appeared and has ever since , randoly comes and goes.

I started using LDN in January 2008 i started LDN on 3mg, for the first 4-6 weeks i had great results, my symptoms slightly improved - walking/balance/bladder all slightly improved, and i didnt progress.
Around March - July 2008 i started to get much worse, for no reason, my symptoms deteriorated much quicker than if i hadnt taken LDN.
Every dose i took made me alot worse, besides 2mg , which didmt make me progress.

Since July 08 i have stuck to the only dose which doesnt make me worse, and stops my progression - 2mg

Anyway thanks to someone on a different forum this led to me having a specialist Lyme disease test - lympochete transformation test , which came back Positive showing 'current ongoing active lyme borrelia'
(i had a western blot test in July 08 which came back negative, but they are well known to show false negatives)

So i then researched treatments and came to the decision to use a Rife machine (the Doug Coil machine) , which kills only spirochetes but with no side effects/risks/doesnt trigger the spirochetes defense mechanism.
Which i started using in May 09. I have never done antibiotics for Lyme.

I understand Lyme treatments prove effectiveness by the patient having a Herxheimer reaction, but since starting my Rife machine in May 2009, i have NEVER had a herx reaction. Which everyone with Lyme using a Rife machine cannot understand why, as everyone does.
This is showing that none of the bugs/spirochetes are being killed.

So i researched more and came across a message on the LDN yahoo group from November 08 saying:

> > LDN can and usually does backfire with untreated Lyme disease. That
> > is how I discovered that I have Lyme, because I tried LDN and
> > everything got much worse, and prompted me to get testing done that
> > revealed Lyme. Since then I have heard the same story repeated again
> > and again from many people with Lyme.
> >
> > In my opinion, the ability to tolerate LDN is a good test of the
> > relative severity of infection when you do have Lyme. LDN seems to
> > "turn the lights on" for your immune system and reveal everything that
> > was previously invisible. If there's nothing there, you're fine. If
> > your body is riddled with spirochetes, you're in for a BUMPY ride as
> > all-out warfare commences.
> >
> > Lyme sufferers that have been on antibiotics for extended lengths of
> > time or have less severe cases seem to do alright with LDN. I hope to
> > introduce it again in the future to help maintain progress or
> > remission achieved with antibiotics.



This is what made me realise that LDN could be forcing the spirochetes into their stealth forms :"L" and "Cyst" forms which the rife machine cannot reach, hence not killing any spirochetes and 'herxing'.


I have now stopped taking 2mg LDN for 3 weeks and have started to notice a slight decrease in my mobility, but not too major.
I have been using the doug coil machine once a week but havent had a herx reaction yet.

My question is does my hypothesis of stopping LDN so that the Spirochetes come out of 'hiding' so i can kill them with the rife machine sound realistic/possible?

Also how long would you expect it to take after stopping LDN for my immune system to return completely to normal, and how long for the spirochetes to come out of "L" and Cyst form?
i dont want to stop LDN for too long if the spirochetes never come out, as i will just get worse and less mobile.

Is there a time limit for stopping LDN before i should give up on this theory and go back on LDN?

Do you think aswell as my Central Nervous System (MS) symtoms the eczema and urge to twitch and make noise could be caused by Lyme disease?

Thank you for reading and sorry for writing so much, i just thought it would draw a bigger picture.

Adam

Post Edited (adamt) : 9/10/2009 3:47:41 PM (GMT-6)


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 9/10/2009 6:34 PM (GMT -6)   
Hi adamt, welcome to the board!

I am sorry you have been through so much. Which lab did your Western Blot test? The CDC requires several bands to show for the test to be positive; however, many people who have Lyme are not CDC positive. Lyme doctors usually focus on which bands are positive. Some are specific for Lyme. Labs such as Quest and LabCorp do not list all the Lyme-specific bands that IgeneX Lab in Palo Alto does.

Some Lyme doctors prescribe LDN for Lyme patients. It helps some people and does not seem to help others. I think if it is helping you that you should contiue it.

I highly recommend that you be evaluated by a Lyme knowledgeable doctor. Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Lyme needs continuous, aggressive treatment. Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX.

If you need a doctor recommendation, you can email me at ko_@bellsouth.net

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the books "The Lyme Disease Solution" by Kenneth B. Singleton, MD and "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner.

adamt
New Member


Date Joined Sep 2009
Total Posts : 10
   Posted 9/11/2009 1:43 AM (GMT -6)   
thanks for the reply ticker.
Looking at the list i have possibly 7-8 of those symptoms.

Sorry but i was hoping someone would help with the questions i asked about using LDN with the Rife machine, and the bugs life cycle from - -" L" and Cyst form - to - Spirochetes.
i have researched all the possible treatments and this one seems best to me.

By the way i was already diagnosed my a LLMD in March 09 , clinically and from the Positive spealized lyme test i had

thanks :)

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 9/11/2009 8:49 AM (GMT -6)   
What is LDN?

chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 9/11/2009 12:26 PM (GMT -6)   
Low Dose Naltrexone.
 
It is an immune system booster.

Sulma
Regular Member


Date Joined Apr 2008
Total Posts : 366
   Posted 9/11/2009 1:11 PM (GMT -6)   
adamt said...
thanks for the reply ticker.
Looking at the list i have possibly 7-8 of those symptoms.

Sorry but i was hoping someone would help with the questions i asked about using LDN with the Rife machine, and the bugs life cycle from - -" L" and Cyst form - to - Spirochetes.
i have researched all the possible treatments and this one seems best to me.

By the way i was already diagnosed my a LLMD in March 09 , clinically and from the Positive spealized lyme test i had

thanks :)
 
I started LDN about one month ago, Adam.  LDN does seem to be able to provoke an immune response, but there are so many other factors it's hard to say what effect it may effect an immuno dysfunctional person.  If you have anergy it may have no effect at all. I know my total leukocyte can come up at bit from CBC's, but that doesn't mean they've successfully "marked" the borrelia for attack.
 
You raise some points about which I think we have nothing to offer apart from speculation. While it is known that borrelia can morph into various forms, I don't think anyone has been able to show how and why these transformations may be triggered. 
 
I think your question though is whether the LDN is just making you sicker or if you are herxing and thus it's actually effective for you. Your increase in symptoms could mean more borrelia is being destroyed, resulting in an increase of various neurotoxins. You could use a method to test that I've found successful.
 
Stop the LDN and the same day begin aggressive detoxing for 3-4 days, then re-rate your symptoms. If they've dropped signficantly, restart your LDN therapy. If your symptoms increase again within 3-5 days, repeat the cycle. If you keep seeing the same increase and decrease in symptoms from this method, I think it would be reasonable to conclude you immune system is successfully kicking some Borrelia butt; the related increase in neurotoxins is from the die-off and is responsible for your exagerated symptoms.  If it turns out it might be helping, then just keep cycling your LDN therapy so that your symptoms never become intolerable.
 
 

adamt
New Member


Date Joined Sep 2009
Total Posts : 10
   Posted 9/12/2009 6:53 AM (GMT -6)   
thanks for the replies.

Ive now been off LDN for 4 weeks, and have noticed my mobility is a little worse but yet i am still not herxing when using the rife treatment.

I think people are confused as to what im asking:


My question is does my hypothesis of stopping LDN so that the Spirochetes come out of 'hiding' so i can kill them with the rife machine sound realistic/possible?

Also how long would you expect it to take after stopping LDN for my immune system to return completely to normal, and how long for the spirochetes to come out of "L" and Cyst form?
i dont want to stop LDN for too long if the spirochetes never come out, as i will just get worse and less mobile.

Is there a time limit for stopping LDN before i should give up on this theory and go back on LDN?
"


Does anyone know the answers or opinions to these specific questions please?

thank you

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1295
   Posted 9/12/2009 9:42 AM (GMT -6)   
Adamt, these are really tough questions -and I think they are important - as your hypothesis does make sense. I am not on LDN, but would like to be.

But I don't know if anyone but a researcher could answer these questions. Hopefully this will bump your questions up so maybe others will have at least some of the answers?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 9/13/2009 1:26 PM (GMT -6)   
It's been described to me that LDN turns off a persons ability to produce dopamine for several hours.  This signals to the body that more needs to be produced, and so the body will produce more, and the LDN will wear off (thus kicking your system into better gear).
 
I haven't heard anything about it related to helping the lyme to morph.  I don't think we know enough yet about this (we, meaning doctors and researchers).
 
I have been on 2mg for about 2 months now.  When I tried to raise it, I felt itchy and like there were bugs on me.  I did have an immediate relief of some of my symptoms, but they have come back.  I now take the LDN at night.  I think I will experiment with the time I am taking it, because of some night issues I have.
 
Adam, I think it might be more of a fruitful exercise to figure out everything else you can (what co-infections you have, what your CD57 is, etc. if you haven't already).  To see that you are treating what needs to be treated.  I'm unsure as to why you didn't treat with antibiotics, but the more info you have about what infections you have, the better a decision you can make regarding how to treat. Also, to look into ways you might be able to minimize herxes would be a good idea (as someone mentioned).  Cholestyramine, Welchol, etc.  I like people's posts here... paying attention to detox.  I also agree that if LDN helps, you should do it.  Mobility is important for so many reasons.  I know that intimately.
 
But Adam, I wouldn't stop asking your question, regarding 'do we know why LDN works, and how does it affect the spirochetes'?
Especially to your LLMD or on MMI or something.
I would stop it too if we learned for sure that it has the capacity to do that.
 
At this point however, I have learned that Magnesium does it, Vitamin D can do it, steroids, and some other supplements.  That lyme feeds on these things, or that for instance steroids lower the immune system so the body can't fight lyme, etc., etc.
 
So much contradictory information out there, we just don't know.
Tracy

Ling Lan Shr
New Member


Date Joined Aug 2012
Total Posts : 1
   Posted 8/9/2012 3:03 AM (GMT -6)   
accurate information about LDN and how it works can be found at: http://www.lowdosenaltrexone.org

"LDN ... works by restoring endorphin levels to normal, thereby allowing the immune system to resume its normal supervision and orchestration."

Ling Lan Shr

Buzzatsea
New Member


Date Joined Sep 2013
Total Posts : 1
   Posted 9/10/2013 9:24 AM (GMT -6)   
Could you please share which rife frequencies you were using?

I'm on LDN to manage the little Lyme ******s & have been lucky as it helps me a lot (I also have autoimmune tendencies). It was a rocky road at first though- I'd chalked that up to dietary indiscretions but maybe there was a war going on!

I'd like to double-team with my rife machine with confidence that I have some good frequencies. (I lost the manual that contained the frequencies :( ).

breezy300
New Member


Date Joined Sep 2013
Total Posts : 7
   Posted 9/13/2013 1:35 AM (GMT -6)   
Buzzatsea, a few Lyme frequencies: 612 hz, 2016 hz, and 432 hz.

Gondwanalland
New Member


Date Joined Feb 2014
Total Posts : 1
   Posted 2/9/2014 2:09 PM (GMT -6)   
Tallison said...


At this point however, I have learned that Magnesium does it, Vitamin D can do it, steroids, and some other supplements. That lyme feeds on these things, or that for instance steroids lower the immune system so the body can't fight lyme, etc., etc.



Can anyone please direct me to further info regarding this statement?

I have only found Dr. Klinghardt's recommendation regarding magnesium @ http://www.klinghardtacademy.com/images/stories/Lyme_Disease/klinghardt_biological_treatment_of_lyme_disease_protocol.pdf

Thanks!

Izzy

microtyger
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/11/2014 3:34 PM (GMT -6)   
RE: the post:
So i researched more and came across a message on the LDN yahoo group from November 08 saying:

> > LDN can and usually does backfire with untreated Lyme disease. That
> > is how I discovered that I have Lyme, because I tried LDN and
> > everything got much worse, and prompted me to get testing done that
> > revealed Lyme. Since then I have heard the same story repeated again
> > and again from many people with Lyme.
> >
> > In my opinion, the ability to tolerate LDN is a good test of the
> > relative severity of infection when you do have Lyme. LDN seems to
> > "turn the lights on" for your immune system and reveal everything that
> > was previously invisible. If there's nothing there, you're fine. If
> > your body is riddled with spirochetes, you're in for a BUMPY ride as
> > all-out warfare commences.
> >
> > Lyme sufferers that have been on antibiotics for extended lengths of
> > time or have less severe cases seem to do alright with LDN. I hope to
> > introduce it again in the future to help maintain progress or
> > remission achieved with antibiotics.

How can you be sure this person was not familiar with a herx reaction, and maybe that's what it was. The person said that's how they found out they had Lyme, so they didn't have treatment before, I'm assuming.

I would like more info. before on the backgrounds of those people before jumping to the conclusion that LDN really is 'backfiring" regarding Lyme.

Just a thought. :-)
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