Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

[Gingergrrl]

It is not clear to me what these reactions constitute. I wonder why such a large number of medicines/ antigens have a similar reaction in our group. I would be interesting to see if there is a common pathway . I'm not sure why these reaction have never really been investigated.

@Butydoc I cannot explain the reason but for myself, I take tiny micro doses of meds and they are equivalent to full doses in a normal person. I have had doctors joke that my doses are "homeopathic" although of course not in the true sense of the word.

Now with MCAS, all bets are off b/c of potential anaphylaxis reactions which was my main question and concern re: LDI that drew me to this thread to begin with. I do not doubt it is a real treatment option, only if someone like me (who cannot tolerate one liter of IV saline at normal rate) could tolerate it.

ETA: I also know that I am a slow metabolizer of the liver (I think it's the 2D6 pathway) so I do not process meds or toxins like a normal person but not sure if that relates here?

 

[barbc56]

Hi Gingergrrl,

It is not clear to me what these reactions constitute. I wonder why such a large number of medicines/antigens have a similar reaction in our group. I would be interesting to see if there is a common pathway . I'm not sure why these reaction have never really been investigated. Maybe if they were, this might lead insight to our disease. I wonder what Dr Edwards thinks might be the mechanism involved.

With this DD, it's remitting and relasping so it's often hard to sort out what is going on.

Where I get confused is when people say if you feel worse it's a herx. If you feel better, it's the treatment.

I'm wondering if the effect over a longer period of time might be a better way of proving the effacacy of a treatment. An example would be the PACE trial.

@Butydoc, were you trying to tag @Jonathan Edwards?

Barb

ETA Butydoc, over the years I have mistakenly read your PR name as Bullydoc. I didn't realize that until today. I hope this wasn't a Freudian slip. Not to worry, though. I think Freud was full of it. Maybe, I should go over your posts though, just to make sure?

 

[Butydoc]

Hi Barb,

Butydoc was meant to be Beauty Doctor shortened for my license plate. I no longer practice as a Plastic Surgeon and rid my self of that plate, but still use it as my user name.

I was trying to tag Jonathan. I feel he might be able to shed light on this. Unfortunately not savvy enough to tag him properly.

Best,
Gary

 

[barbc56]

Ha, ha and damn. I need an eye lift and was hoping to get a discount. This might be considered bullying by default?

Barb

ETA

Unfortunately not savvy enough to tag him properly.[/QUOTE

It happens to the best of us. It took me several years to realize there's a list of new threads on the forum home page! Then there's the issue of your name and I'm sure there are a lot of other examples. It's a learning curve. Unfortunately, sometimes I get stuck at the bottom.

My ETA is a prime example. Not sure what I did.

 

[Gingergrrl]

With this DD, it's remitting and relasping so it's often hard to sort out what is going on.

It's not relapsing or remitting for me and I got sick with a mild form of whatever I have in Jan 2013, and it has been a 100% pure downhill progression and will be three years in Jan 2016.

Where I get confused is when people say if you feel worse it's a herx. If you feel better, it's the treatment.

I am doing treatments now for MCAS that have made me better and without question these treatments have worked (no "herx" or anything bad.) This enabled me to start mold treatments which are mixed in the sense that they are making some of my symptoms better but also have a detox component that is making me feel worse and also have some side effects. So I do not think it is so cut and dry as you state.

I'm wondering if the effect over a longer period of time might be a better way of proving the effacacy of a treatment. An example would be the PACE trial.

What on earth does the PACE trial have anything to do with this?

 

[barbc56]

What on earth does the PACE trial have anything to do with this?

If there were any "benefits" associated with CBC in PACE, these benefits diminished over time. This is true for a lot of purported dodgy psychological treatments such as The Lightening Process, Emotional Freedom Technique, Gupta Amygdala Retraining and Reverse Therapy to name a few.

Barb

 

[Sushi]

Ah, Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme.

 

[Gingergrrl]

If there were any "benefits" associated with CBC in PACE, these benefits diminished over time. This is true for a lot of purported dodgy psychological treatments such as The Lightening Process, Emotional Freedom Technique, Gupta Amygdala Retraining and Reverse Therapy to name a few.

Barb

Sorry, am still confused how this relates to LDI, or whether LDI is tolerable to someone with MCAS, or to any of the other questions asked in this thread.

I assume by "CBC" you mean "CBT" but am not getting the connection? Are you saying that treatments for Lyme, MCAS, etc, are "dodgy" and comparable to the Lightening Process or the PACE Trial?

 

[Dufresne]

What I find interesting about the link you posted is that both practitioners are alternative medicine doctors who treat large groups of lymes patients. The dilutions they use are incredible dilute and with almost any scientific model one would think doesn't make sense. The interesting part has to do with the reaction of some of these patients to very dilute concentrations of antigens with a resultant worsening of their symptoms. When patients with ME/S.E.I.D./CFS take antibiotic or antivirals or really almost any medication and have a worsening of symptoms they call it a "HERX" reaction. It has never been clear to me what this "HERX" reaction really is. It appears that the reaction with the dilute concentration of antigen which seems like a homeopathic dose causes a similar type of reaction like many drugs and supplements cause. I wonder if all of these reaction have a common source? Since Both Dr. Vincent and Dr Nathan have reported on these type of reaction to what appears to be homeopathic doses, I would have to conclude that there is enough material in these LDA preparation to cause such a response unless both docs are lying, which I doubt.

I've had a herx reaction from a 30, 60, 90X homeopathic borrelia nosode. But I've never herxed from a C dilution. My symptoms were an itchy, swollen sort of headache, along with sore knees (a pretty standard borrelia herx). And these are the exact same herx symptoms I experienced with IV Ancef. Interestingly the herx from the homeopathic was almost as intense as that from the antibiotic.

I'm pretty sure 'the how' of what I experienced, or of what Drs Nathan and Vincent are reporting, cannot be scientifically explained. As Dr Vincent says in the interview, he doesn't know how it's working but he knows it's working, and that's what's important. I think we should just leave it at that. Trying to explain homeopathy in medical terms is just asking for trouble. It would be nice if these guys could formally quantify and report their successes. Then we'd at least have something to work with. Regrettably it seems the docs that are into the alternative stuff are usually averse to proving things scientifically, and the docs practicing disciplined science aren't much into testing alternative therapies.

However here's what looks to be an exception. The following is what appears to be a carefully designed study showing empirical effects from homeopathy up to a 30C dilution. So if these guys are proving there's something physiological happening at that dilution then perhaps Dr Vincent's work with similar dilutions might have some merit.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3190301/

 

[MeSci]

ETA Butydoc, over the years I have mistakenly read your PR name as Bullydoc. I didn't realize that until today. I hope this wasn't a Freudian slip. Not to worry, though. I think Freud was full of it. Maybe, I should go over your posts though, just to make sure?

You can find out more quickly by doing a search using the box on the top right. Just put 'bullydoc' in the top box and, if you want to be more specific, your username in the second box, and untick 'search this forum only'.

 

[Valentijn]

My symptoms were an itchy, swollen sort of headache, along with sore knees (a pretty standard borrelia herx).

No, that's not a standard Herxheimer reaction.

 

[Dufresne]

No, that's not a standard Herxheimer reaction.

So sore knees is not a pretty typical borrelia herx symptom? I think wherever the bacteria are concentrated and dying off is where the symptoms are most likely to be felt. This is going to vary, I imagine, depending on the infection and the individual. Or are we hearkening back to the original description of a Jarisch-Herxheimer reaction? Has our understanding of what a herx/die-off reaction expanded to the point we should no longer be calling such symptoms a herx? Perhaps I should have used the term 'die-off' rather than 'herx'.

I'd like to get your take on the study I linked to. You've a keener eye for such things than I.

 

[MeSci]

So sore knees is not a pretty typical borrelia herx symptom? I think wherever the bacteria are concentrated and dying off is where the symptoms are most likely to be felt. This is going to vary, I imagine, depending on the infection and the individual. Or are we hearkening back to the original description of a Jarisch-Herxheimer reaction? Has our understanding of what a herx/die-off reaction expanded to the point we should no longer be calling such symptoms a herx? Perhaps I should have used the term 'die-off' rather than 'herx'.

I have queried the widespread use of the term 'Herx' too, as I was puzzled that people seemed to be so sure that's what they were having, based on not much evidence, it seemed. I was - and am - genuinely curious as to the symptoms and the certainty. My thread on the subject is here.

 

[MeSci]

Butydoc was meant to be Beauty Doctor shortened for my license plate. I no longer practice as a Plastic Surgeon and rid my self of that plate, but still use it as my user name.

There was I thinking that it related to butyric acid/butyrate, which is an subject of considerable interest to some of us.

 

[geraldt52]

...Where I get confused is when people say if you feel worse it's a herx. If you feel better, it's the treatment...

Herxing. I had to laugh to myself over that statement, barbc56..

Whenever I have done any alternative treatments (aren't they all alternative at this point?) when I felt better the doctor would say that meant the treatment was working...and when I felt worse the doctor would say I was herxing from the treatment, and that meant the treatment was working.

Based on that scientific logic, what I have also found, is that when I am doing absolutely nothing, I sometimes feel better, which must mean that doing nothing is working...and sometimes I feel worse, which must mean that I am herxing from doing nothing, and doing nothing is working.

Since over the long haul the results are exactly the same, I've long since opted for doing nothing, until someone actually figures out what it is we are "treating". It's way cheaper and less stressful.

 

[Dufresne]

I have queried the widespread use of the term 'Herx' too, as I was puzzled that people seemed to be so sure that's what they were having, based on not much evidence, it seemed. I was - and am - genuinely curious as to the symptoms and the certainty. My thread on the subject is here.

I agree 'herx' is overused, and the dismissal of symptoms as just a herx is not a good thing. And certainly sometimes it's difficult to know that what one is experiencing is indeed a herx. This happened to me while on metronidazole, as I was also taking various tinctures, and I guess I exceeded the limit of permissible alcohol. I ended up with a splitting headache and at the time I figured it must have been a herx, but of course it wasn't.

I'm encouraged by a little die-off, but I'll back off somewhat or try to mitigate the reaction if it's uncomfortable. Pushing through bad herxes is how people make themselves worse with antibiotics.

 

[Gingergrrl]

I don't ever use the word "herx" in relation to myself b/c to the best of my knowledge, I do not have a bacterial infection. But I have used "die off" for viral symptoms and "detox" for mold and other toxins. I know people use these terms inter-changeably but that is how I use them.

 

[littlebird6180]

@minkeygirl I also have an April Skype appointment with Dr Vincent. One thing I'm exploring though is I was told I could also come to Alaska and see him in person as early as January and insurance would cover the visit. Of course the flight would cost as much as the Skype visit but it would shave off months of waiting. I probably won't do it because it really does seem crazy to me but it's also hard to wait.

Thank you for sharing that youtube video--I listened to the whole thing and I recommend anyone else who has the time to listen as well. It was fascinating and this treatment just seems logical to me. It makes sense. I've tried a lot of things that didn't make sense--lots of weird supplements or alternative therapies. But LDI seems (from what I've read so far) low risk and logical and promising. A trio that I like

Are there any known success stories with it on this forum?

 

[minkeygirl]

@littlebird6180 I'd move to Alaska to see him if I could.

I don't mind waiting since it will take me awhile to prepare.

You can't really base your experience on anyone else's IMO since our illnesses is so individual and the treatment is so individual.

If I can feel better, stop the disease from progressing then I'm good.

 

[littlebird6180]

@littlebird6180 I'd move to Alaska to see him if I could.

I don't mind waiting since it will take me awhile to prepare.

what are you going to do to prepare?