Started LDI Treatment

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k07
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Date Joined Sep 2015
Total Posts : 2197
   Posted 10/27/2015 7:55 AM (GMT -7)   
I decided to go forward with LDI (Low Dose Immunotherapy). I listened to a really informative podcast on the subject which helped me make up my mind. Basically the approach is the same as immunotherapy for allergies. I am going to try and give a quick overview of LDI and please know that this is just what I have understood from listening to the podcast and from my doctor. My brain is very foggy so it is hard for me to remember and put my thoughts into words.

The belief is that Lyme Disease creates an auto-immune response in our bodies. This would explain why two people do not have the exact same symptoms since our immune systems are different. My doctor feels that the bacteria is not causing the symptoms I feel, but it is my immune response to the bacteria. LDI is supposed to re-establish immune tolerance by introducing a very low dose of dead bacteria (contains like 80 strains total of Borrelia, Bartonella, Babesia, Ehrlichia) mixed with an enzyme. Our body then learns to tolerate the bacteria. I believe the reason you have to dose every 7 weeks is because most our regulatory T cells only live for 55-60 days so we have to "re-program" the new cells. Here's a link to the podcast that can better explain it than I could:

https://itunes.apple.com/us/podcast/cutting-edge-health-wellness/id903291905?mt=2
(number 7)

As for my experience, I had my first sublingual dose on Friday. I started at C16. The only improvement I have is a noticeable decrease in my buzzing. This improvement was realized the same day as dose. I have had no improvement in numbness, fatigue, brain fog, night numbness, ear noise. It is early days so we will see how this goes.

I am not taking antibiotics, only multi-vitamin, vitamin d, vitamin c, probiotic, heavy metal detox and lots of other detox measures (baths, tea, dry brush, etc). The doctor does not want me to take antibiotics but I still struggle with the idea of leaving the bacteria alone. However, if my immune system is no longer reacting to the bacteria then it should get stronger and hopefully be able to handle Lyme & co. I am still toying with the idea of once I find my core dosage possibly implementing herbals like Japanese Knotwood, Cat's Claw, etc. Just need to read up more on everything.

Also, the belief is if I see no improvement with this then it is NOT lyme causing my symptoms. I thought that was interesting. And also they are starting to use this low dose approach for viruses like EBV and HHV-6.

sarahm620
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Date Joined Feb 2014
Total Posts : 1808
   Posted 10/27/2015 8:36 AM (GMT -7)   
Any noticeable improvement is great!
Sarah
-positive IGM Western Blot- 39, 41 in January 2014// Igenex & CDC positive 11/14
-positive ANA and very low CD57
Chronic daily headaches since 2005

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27969
   Posted 10/27/2015 9:57 AM (GMT -7)   
It sounds promising, kyo07!!

I'm curious about this treatment - I have recently found out a LLND near me (3 1/4 hr drive) is now offering it.

Please keep us updated on your progress.
Moderator, Lyme Forum
Symptoms started April/13; Buhner's protocol May 15/14 to July24/14
Igenex pos. July 3/14 Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14
Amox 1000mg x3 + Probencid Aug. 29/14; added biaxin 500X2 Sept. 26/14
Disc. amox and added Ceftin Nov. 20th. Jan/15 pulsing Tindamax ; disc biaxin
Buhners bart herbs added Dec/14; ABX/Buhner herb break Apr/2015

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2197
   Posted 11/3/2015 2:45 PM (GMT -7)   
Sarah & Girlie - What are your thoughts on doing an herbal protocol (or even abx) with LDI. Have you read or heard anything about it? Don't really want to ask my LDI doc. Honestly don't like him and I'm pretty sure he would say no. But I have read about some people that are doing both. I believe issue may be if you herx or flare and not knowing which is causing it. I would think if I found my core LDI dose and then introduced herbs/abx it should be ok.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27969
   Posted 11/3/2015 2:52 PM (GMT -7)   
I was given some information on the LDI by a Facilitator of a Lyme Group not too far away from me.

It was a presentation by a Dr. who mentioned that there were a lot of rules - too many in fact he said.
He went on to say that many people refused to try the LDI because of the rules...and he found that even the people who didn't follow the rules got results.

I will see if I can find the information...and post some 'pieces' of it.

If possible, I would want to do treatment in conjunction with it...maybe not antibiotics, but herbs for sure.
Moderator, Lyme Forum
Symptoms started April/13; Buhner's protocol May 15/14 to July24/14
Igenex pos. July 3/14 Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14
Amox 1000mg x3 + Probencid Aug. 29/14; added biaxin 500X2 Sept. 26/14
Disc. amox and added Ceftin Nov. 20th. Jan/15 pulsing Tindamax ; disc biaxin
Buhners bart herbs added Dec/14; ABX/Buhner herb break Apr/2015

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2197
   Posted 11/3/2015 4:34 PM (GMT -7)   
I feel like I'm not doing enough. I so badly want to start adding herbs in. I'm ok with no abx.

sarahm620
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Date Joined Feb 2014
Total Posts : 1808
   Posted 11/4/2015 7:07 AM (GMT -7)   
From what I understand, the LDI is supposed to be stimulating your immune system to kill off the Lyme. So you don't want to add too much else, or you could have a severe herx. I know you say you don't want to ask your doc, but I wouldn't start herbs with LDI without asking someone...
Sarah
-positive IGM Western Blot- 39, 41 in January 2014// Igenex & CDC positive 11/14
-positive ANA and very low CD57
Chronic daily headaches since 2005

sarahm620
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Date Joined Feb 2014
Total Posts : 1808
   Posted 11/4/2015 7:17 AM (GMT -7)   
Kyo, actually, the more I think about it, I wouldn't really add anything. Because then if you have a herx or a bad reaction, you won't know what's causing it. That's why they want you to stop other meds so you can see the reaction.
Sarah
-positive IGM Western Blot- 39, 41 in January 2014// Igenex & CDC positive 11/14
-positive ANA and very low CD57
Chronic daily headaches since 2005

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2197
   Posted 11/4/2015 7:27 AM (GMT -7)   
I just hope it works that way Sarah! I thought LDI turned my immune system off to the bacteria so in turn it gets stronger because it's no longer fighting a losing battle. I have not found strong evidence that my immune system then kills off the bacteria, but that is what I would hope for. What kinds of tests could be performed to see if that is in fact the case. Possibly cd 57 (prior to treatment 41), and vitamin levels that Lyme lowers (my magnesium, b12, ferritin and d are a low)? I guess if I see an increase in any of those, as well as a decrease of symptoms, then it could indicate a decrease in Lyme & co. I would also like to repeat Igenex testing maybe in Spring just for my own curiosity. Let's hope this works.

sarahm620
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Date Joined Feb 2014
Total Posts : 1808
   Posted 11/4/2015 7:33 AM (GMT -7)   
I don't know what tests, but that's the way my doctor described it to me. She said it activates your T-cells to the bacteria.
Sarah
-positive IGM Western Blot- 39, 41 in January 2014// Igenex & CDC positive 11/14
-positive ANA and very low CD57
Chronic daily headaches since 2005

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2197
   Posted 11/19/2015 5:35 PM (GMT -7)   
I wrote a long post on my LDI update and my Internet Explorer shut down. Ugh. Anyway, took a booster last week and my buzzing went away completely again. However, have had some old & new things crop back up like palpitations (old), jaw pain (old) and jaw/teeth shaking (new), knee pain (old). Today I feel the buzzing in my feet on a very low level. So it was gone completely for 7 days this time which is 2 days more than the last time. This means I need a booster again and will probably do that on Sunday. I am doing a round of chelation right now and don't like to overlap (although I was told it's fine to chelate while on LDI). Nutramedix Pinella really helps with my jaw tightness. I am wondering if this is a herx of some sort. My detox has not been the greatest the last few weeks.

Had a Skype call yesterday with the main LDI doc himself. He wants to split my Lyme LDI out to separate Bartonella and Borellia (usually it contains Borellia and co’s in one). He believes my buzzing is Bartonella related and my dose for that is right on. I agree with this because when I took abx a few months back I did have a change in my buzzing when I took Biaxin/Plaquenil combo. I believe Biaxin hits Bart, so that makes sense. The rest of my abx were Borellia targeted. But my more Borellia-type symptoms have had no change, so he thinks we need to go stronger on the Borellia LDI . Fingers crossed. Probably won’t get the split doses for a week or so.

Since I am getting an almost immediate response with my internal buzzing, it is enough to keep me going with this.

Also, my LLNP ran some bloodwork last week and my CD-57 went up to 59. It was 41 in August. I had only been on LDI for 3 weeks prior to test, so I am sure the score is a reflection of the 10 wks of abx, supplements, parasite treatment, metal chelation, detox, etc. However, it will be an interesting gauge to see if it continues to rise while doing LDI. If it would happen to go south then I know I should probably get back on abx.
Major Symptoms 4/15, Igenex Testing 8/15
IFA Positive, IGG 31+++, 39 IND, 41++, 58++ / IGM 31++, 39 IND, 41+, 58+ 66+
Positive 31kDa Epitope Test IGG & IGM
MTHFR a1298c heterozygous / HLA 15-6-51
Antibiotics 8/15-10/15. LDI (Low Dose Immunotherapy) 10/15 to present
Chelating using Andy Cutler protocol for heavy metals (Lead, Alum, Copper, Cadmium, Uranium)

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27969
   Posted 11/19/2015 6:07 PM (GMT -7)   
Sounds promising!

Here's a link to some information on LDI:

www.specialtynaturalmedicine.com/lyme-disease-ldi/

from the website:

"Through the use of LDI in this context, we are stopping the immune system from making auto antibodies against the tissues of the body and causing chronic Lyme symptoms."

So, I have a question: Do you only use LDI after you've treated for a while - otherwise what's killing the bacteria. I understand that the the turning off of the immune system against the tissues stops symptoms -but are we still left with bacteria?
Moderator, Lyme Forum
Symptoms started April/13; Buhner's protocol May 15/14 to July24/14
Igenex pos. July 3/14 Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14
Amox 1000mg x3 + Probencid Aug. 29/14; added biaxin 500X2 Sept. 26/14
Disc. amox and added Ceftin Nov. 20th. Jan/15 pulsing Tindamax ; disc biaxin
Buhners bart herbs added Dec/14; ABX/Buhner herb break Apr/2015

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27969
   Posted 11/19/2015 6:08 PM (GMT -7)   
kyo07 - So are you on anything -anitibotics or herbs to target any infections while you do the LDI?

And did you follow all the strict rules that come with it?
Moderator, Lyme Forum
Symptoms started April/13; Buhner's protocol May 15/14 to July24/14
Igenex pos. July 3/14 Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14
Amox 1000mg x3 + Probencid Aug. 29/14; added biaxin 500X2 Sept. 26/14
Disc. amox and added Ceftin Nov. 20th. Jan/15 pulsing Tindamax ; disc biaxin
Buhners bart herbs added Dec/14; ABX/Buhner herb break Apr/2015

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2197
   Posted 11/19/2015 6:36 PM (GMT -7)   
I am only taking vitamin d, vitamin c, vitamin e, methyl b, detox pill (has milk thistle and other things in it), probiotic, coconut oil and soon stevia (-:

I am not sure if anyone knows exactly how this works! I briefly touched on it with Dr. V and he says it is restoring immune tolerance. However, I have read other things where people say that when our immune system is no longer attacking ourself that it actually kills some of the Lyme and maybe what is left goes into round body form. This is so new and there needs to be more research. This is one particular response that caught my eye on the Facebook page:

Many symptoms ( pain, fatigue, cognitive and mood) are a result of inflammation and cytokines response. Cytokines are the soldiers your body uses in infection. The bugs fool our bodies and make the wrong soldier come out. They cannot find the bugs and in turn attack our own bodies. When you give the body a tiny amount of the bug that it can recognize - it's response can be corrected. It stops sending the wrong kind of soldiers. It stops attacking itself. For example less inflammation results in better circulation ( blood flow) and with that many neurological problems can resolve. Many neurological issues are actually vascular at their root.
So your body might never clear the infection completely but will live with it much more comfortably. Without it making damage or reducing your quality of life.

What do you think? I keep hoping that I am not making the wrong decision in trying this.
Major Symptoms 4/15, Igenex Testing 8/15
IFA Positive, IGG 31+++, 39 IND, 41++, 58++ / IGM 31++, 39 IND, 41+, 58+ 66+
Positive 31kDa Epitope Test IGG & IGM
MTHFR a1298c heterozygous / HLA 15-6-51
Antibiotics 8/15-10/15. LDI (Low Dose Immunotherapy) 10/15 to present
Chelating using Andy Cutler protocol for heavy metals (Lead, Alum, Copper, Cadmium, Uranium)

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27969
   Posted 11/19/2015 9:14 PM (GMT -7)   
"When you give the body a tiny amount of the bug that it can recognize - it's response can be corrected"

So, that's the part i don't get. How come the body recognizes that bug...but can't find the ones we already have? The ones we have aren't all hiding, are they?


I do not think you're making a wrong decision...the herbs and antibiotics will always be there if you want to do them, right? It's totally up to you.
Moderator, Lyme Forum
Symptoms started April/13; Buhner's protocol May 15/14 to July24/14
Igenex pos. July 3/14 Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14
Amox 1000mg x3 + Probencid Aug. 29/14; added biaxin 500X2 Sept. 26/14
Disc. amox and added Ceftin Nov. 20th. Jan/15 pulsing Tindamax ; disc biaxin
Buhners bart herbs added Dec/14; ABX/Buhner herb break Apr/2015

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2197
   Posted 11/20/2015 5:55 AM (GMT -7)   
Girlie -

I copied a few more people's responses to our same question and concern. You have much more knowledge about this bacteria and our bodies response so hopefully this helps. I really need to read and re-read it all a thousand times before it sinks in with me! I like debating this so that maybe we can come up with a general idea of how this works. I will continue to test cd 57 monthly just to see how my NK cells are doing. Any idea on other tests that would be helpful?

Response from 1 person:
And i think that the immune system is somewhat desensitized, but that it stops overworking and causing inflammation. So then somehow the immune system goes from a TH2 response to a TH1 type response, and also the LDI creates more T reg cells, so there is a better response overall.

Another response from a different person (I believe he's a doctor):
The bacterial cell wall has similar molecules found on our cells, so our immune system gets confused and starts reacting to our own tissues." "The same thing can occur with Lyme, strep, candida and many other microbes including viruses. LDI is essentially a homeopathic preparation of inactivated organism (called a nosode for the homeopathically inclined) mixed with an enzyme called beta glucuronidase. Dr. Len McEwen, an ENT physician in the UK, found by accident that beta glucuronidase seems to help “turn off” the immune reaction to whatever is mixed with the enzyme." "So if we mix a strep nosode with the enzyme, it can help shut off the overreaction to the strep. It does not seem to interfere with the normal immune mechanism our body has to appropriately fight off infection.
Major Symptoms 4/15, Igenex Testing 8/15
IFA Positive, IGG 31+++, 39 IND, 41++, 58++ / IGM 31++, 39 IND, 41+, 58+ 66+
Positive 31kDa Epitope Test IGG & IGM
MTHFR a1298c heterozygous / HLA 15-6-51
Antibiotics 8/15-10/15. LDI (Low Dose Immunotherapy) 10/15 to present
Chelating using Andy Cutler protocol for heavy metals (Lead, Alum, Copper, Cadmium, Uranium)

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2197
   Posted 11/20/2015 6:55 AM (GMT -7)   
You would think they would want an enzyme that would "turn on" the response so that it could target the bacteria of whatever the inactivated organism was. That way it would wipe out Lyme and co. That would be the response I would want!
Major Symptoms 4/15, Igenex Testing 8/15
IFA Positive, IGG 31+++, 39 IND, 41++, 58++ / IGM 31++, 39 IND, 41+, 58+ 66+
Positive 31kDa Epitope Test IGG & IGM
MTHFR a1298c heterozygous / HLA 15-6-51
Antibiotics 8/15-10/15. LDI (Low Dose Immunotherapy) 10/15 to present
Chelating using Andy Cutler protocol for heavy metals (Lead, Alum, Copper, Cadmium, Uranium)

sarahm620
Veteran Member


Date Joined Feb 2014
Total Posts : 1808
   Posted 11/20/2015 7:33 AM (GMT -7)   
"I understand that the the turning off of the immune system against the tissues stops symptoms -but are we still left with bacteria?"

My doctor specifically said to me that it directs the T cells to fight the bacteria. I will ask her again at my next appt to clarify.
Sarah
-positive IGM Western Blot- 39, 41 in January 2014// Igenex & CDC positive 11/14
-positive ANA and very low CD57

cirenep
Regular Member


Date Joined Mar 2015
Total Posts : 101
   Posted 3/15/2016 6:54 PM (GMT -7)   
@k07 how is LDI working for you? Does it seem to be helping at all? Also, are you seeing a dr in Alaska? Thanks!

CMatt
New Member


Date Joined Nov 2016
Total Posts : 1
   Posted 11/17/2016 10:32 AM (GMT -7)   
Hey K07. We are thinking of trying LDI to combat Lyme for my wife. How did it turn out for you today? Did it work? Thank you so much!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27969
   Posted 11/17/2016 10:45 AM (GMT -7)   
Hi CMatt - welcome to our community!

Hopefully K07 will be on the forum to see this and respond to your questions.


Has your wife already been treating lyme disease?

I have been contemplating the LDI as well. My LLND has all her patients go on some antibiotics first to get the bacterial load down. I don't know if that is what most of the Dr.'s do, though.

When you have some time, you might want to take a look through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.

Good luck. I'm glad your wife has a supportive husband to help her through this.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to biaxin.

k07
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Date Joined Sep 2015
Total Posts : 2197
   Posted 11/17/2016 12:31 PM (GMT -7)   
I stopped LDI after 3 months because I wanted to try herbs and my doctor would not let me do both (dr.v). It did help me - internal buzzing went away and had good energy but lasted at most 10 days. Booster doses were not effective for me. Hope this helps.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27969
   Posted 11/17/2016 12:45 PM (GMT -7)   
So, K07 - you skyped with Dr. V.?

Did he have an explanation about the booster doses not working for you?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to biaxin.

Krimpet 🍔
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Date Joined Apr 2016
Total Posts : 3274
   Posted 11/17/2016 3:54 PM (GMT -7)   
Perhaps because they are smaller so you don't get the same effect.
Lyme Moderator

Quest/labcorp test =negative (reactivated viruses and myco p, Igenex test=negative, Krimpet symptom test=highly probable

November words of encouragement: "Good health is my divine right. I know that every cell in my body is intelligent and knows how to heal itself. My body is always working toward perfect health. I now release any and all impediments to my perfect healing.--Louise

Huddie
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Date Joined Nov 2014
Total Posts : 3126
   Posted 11/17/2016 4:06 PM (GMT -7)   
K07,

Thanks for posting and educating us. Sounds promising. I do not want to do abx. and like you feel I am not doing enough. I'm only on three herbs but feel they are really beneficial so don't want to stop them. I live in NYC so may look into this. Psychologically I don't like the idea of taking in dead bacteria when the entire point is to kill bacteria and get dead bacteria out of our bodies. It seems counter intuitive but intriguing.

Keep updating us on how you are feeling.
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