Good news, I figured out what caused my severe decline in health the past 7 weeks. It was caused by Low Dose Immunology Therapy.
Bad news is there has been NO let-up in the worst flare since starting my original aggressive antibiotic protocol in Nov ' 16.
I have posted recently that I had wanted to stop all meds to get a baseline reading of my body's progress. Then I thought a pulse treatment of 6 weeks on and 3 weeks off would be a better option.
Many LLMD's say to try LDI after 1 to 2 years of Lyme treatment if no further gains are made.
But many skeptic LLMD's state to stay on antibiotics while trying LDI to wipe out germs. The reason for this is because LDI may suppress the immune system in a way that allows Lyme and the co-infections to grow.
The theory of Lyme as Autoimmune/ New Lyme Paradigm is by Dr Ty Vincent, who is not a LLMD. LDI was created to induce tolerance to a pathogen which will switch off inflammatory response that causes symptoms.
Dr K has also stated that the biggest problem with Lyme Disease isn't with the bugs but with the body over-reacting to the bugs.
Any chronic inflammatory condition labeled autoimmune probably has a trigger, that could be 'patient themselves' or something not human, that can live in the gut, urinary track, sinuses, or anywhere else. Thereby, if you take that trigger, you can use it to desensitize the patient through LDI, making the inflammatory reaction to go away, and therefore the symptoms.
A dead, stenitized pathogen extract is mixed with B-glucuronidase, an enzyme the increases the immunizing effects by activating T-suppressor cells.
The LYME MIX, is a mixture of that comprises over 70 different species, including borrelia, bartonella, babesia, ehrlichiosis, coxiella, and other pathogens found in Lyme patients.
Most people carry these bateria in our bodies forming our 'normal flora' but an over chronic immune response is what causes symptoms. LDI can retrain the immune system.
Expertise is in finding the proper dilution, schedule of proper doses, and the pathogens to dose, by recording the patients responses. Too high a dose, the patient will become sicker and no immune tolerance will be achieved. If the patient sufferers a flare, lower the dose. If there is no reaction, a higher dose is gradually administered.
Many patients who try LDI, give up on it because it is hard to get it to work. Constant tweeting of doses or severe flares are the cause.
My story is that I started LDI because of constant sickness every Fall. Here is original lymenet post started by ilovedogs ;
After my 1st LDI, I had no reaction so the decision was made to up the 2nd dose. After the 2nd dose, subtle increase in symptoms so the decision was to up the 3rd dose. I am now in week 7 of worst flare since starting original Lyme treatment in Nov 2016.
I blame myself for not researching the pathogens involved. I stupidly thought that pollen, ragweed, grass, mold, yeast, dust mites, food, environmental allergens, and Fall like triggers would be the injected. I don't think I would have allowed Lyme pathogens to be put into my body. The reason being is that I recieve IVIG treatments because of an immune system disfunction. IVIG also carries the risk of viruses being carried into globulins. It seems to me that this places an extremely large burden on the immune system.
Time to heal. Hoping this will help others.
[ 02-22-2018, 03:59 PM: Message edited by: Bartenderbonnie ]
Posted by Keebler (Member # 12673) on :
- . . . The LYME MIX, is a mixture of that comprises over 70 different species, including borrelia, bartonella, babesia, ehrlichiosis, coxiella, and other pathogens found in Lyme patients.
Most people carry these bateria in our bodies forming our 'normal flora' but an over chronic immune response is what causes symptoms. LDI can retrain the immune system. . . . " (end quote)
I disagree with the second phrase. Most people do not "carry" borrelia, bartonella, babesia, ehrlichiosis, coxiella. Thinking these can be controlled only by any kind of low immune approach can lead to more disaster.
Addressing immune support with key nutrients can be very helpful but - IMO - each of these infections can be brutal. They require a specific direct approach, first of all. Various support methods come along for the ride. They do not replace the driver. -
Posted by Keebler (Member # 12673) on :
- Bonnie,
I assume the immune therapy you talk about is the IVIG. I understand that since you say you "receive IVIG treatments because of an immune system dysfunction."
That you are disappointed in the reaction must be very hard. While your immune dysfunction might be something unique, lyme - itself - can cause immune dysfunction. It literally "flips" a couple parts of immune function around. Lyme treatment usually turns that back around.
Still, even if your immune dysfunction might totally separate from lyme issues (or was before lyme came along), don't give up on immune support. There are other ways to approach it.
Medical Mushrooms can be excellent in this area. Paul Stamets is the expert in this area. He has various lectures, articles, etc.
So can LDN (Low Dose Naltrexone) though it seems to either be really good or can be really bad. I did very poorly on it but it was easy to just not continue. Others have found it very nice, though. It's hard to predict just who it helps yet It might be worth looking at.
Whatever aspects you have to work out, I think it's important to know there are always other ways to approach most things. -
Posted by Bartenderbonnie (Member # 49177) on :
Sorry Keebler
Let me clarify. IVIG and LDI are 2 separate therapies.
I've been on IVIG for over a year. It provides donor immunoglobulins that my body fails to produce. It makes me feel so much better. A simple blood test of IG subclasses 1 - 4 determines if you qualify for treatments.
The LDI therapy is something I recently added for seasonal allergies. I wasn't prepared for the LYME MIX.
All the statements from my post were quotes from the link I provided from betterhealthguy. It is a long and hard to understand article so I condensed the contents for readers.
I just want to warn others of the serious side effects one might experience from LDI. I have been sufferring something terrible and had no idea what was happening to me. It is so heartbreaking to start to feel better then crash hard.
LLMD' s say to stay on antibiotics if you are recieving LDI Lyme MIx.
Does LDI work ? Patients who stick with it, say yes.
Posted by Ocean (Member # 3496) on :
Thank you for posting...My LLND told me last appointment he wanted to discuss starting LDI with me at my next appointment in March. I have been researching a lot. I've read stories like yours where people felt worse and some where people did better. Does your doc also do "just Bb" or "just babesia" or is it all mixed in?
I'm sorry you are feeling so bad right now...that has to be awful!
Posted by Bartenderbonnie (Member # 49177) on :
Because Lyme is so complex, with each patient sufferring from a wide range of symptoms, it requires a great deal of time to carefully document each individual . Each patient receives a dose specifically tailored to them, based on their symptoms.
Quote;
" The key difference between autoimmunity and allergy is that if an allergic individual avoids whatever triggers their allergies ( foods, polls, dust, animals, ect.) they do not become or stay sick.
However, an individual with an autoimmune disorder will remain symptomatic even after the trigger has been removed.
With LDI, the strategy is to use the right triggering antigens at the right dose at the right interval in the right solution to put out the autoimmune reaction."
While my relapse is epic, I can understand the reasoning behind it. I'm at a crossroads over whether to continue it.
I guess I'll cross that bridge when I get to it. Many patients have reported being healed after recieving this therapy. I'll say it again, LYME IS A HORRENDOUS DISEASE !!!
Posted by Lassie27 (Member # 31083) on :
Is this a similar concept to NAET?
Posted by Bartenderbonnie (Member # 49177) on :
No
Posted by lightfoot (Member # 2536) on :
My experience with LDI:
I did LDI for several months and decided it was not doing much for my neuro symptoms or any symptoms.
Posted by lightfoot (Member # 2536) on :
My experience with LDI:
I did LDI for several months and decided it was not doing much for my neuro symptoms or any symptoms.