Confusion regarding being "healed"

Above all else, no person can say that someone has been in treatment long enough to eradicate these bacteria. We all have a LOT of things going on in our bodies that can prevent or slow down our healing. Stopping treatments too soon is the number one reason for relapsing.

At this point in time, there is no way to know when or if someone can completely rid themselves of the Lyme bacteria, or even just get rid of all of the Lyme bacteria that is capable of reproducing. We simply don't have the tests that can tell us this for sure. There is one test that says it can, but I haven't seen it touted the way it should be if it really worked, so I'm still on the fence about it - but man do I ever wish it was true!!

For the sake of this discussion, I feel we have to define "cured" and "remission" - most of us understand that remission means that "it" - in this case, Lyme- can reactivate. So let's assume that cured means that Lyme can't come back at all - it will take a reinfection to have the infection again.

Under those circumstances, I believe we can say that without appropriate testing, we don't know that anyone has ever been cured as there is no way to confirm this. It can only take a very small amount of Lyme bacteria to keep a person sick, much lower levels than our current testing can pick up on.

ILADS has said that in order to get lasting relief (remission) that treatment needs to continue for 2 months past the resolution of symptoms - not resolution of some symptoms, all symptoms. This is confusing for many, as we can be left with nervous system symptoms (minor tingling or numbness) that just need more time to finish healing, but there is a difference. If a person stops treatments for, say 6 - 9 months, and the symptoms do NOT worsen, but continue to improve, then it was the right choice to stop treatments. But if those small neuro symptoms start to increase, then obviously the treatments were stopped too soon.

Some people would prefer to stay in treatment a few more months, possibly rotating some protocols (pharma and herbal/natural) through to be sure that they have healed as much as they are going to. That's a personal choice that we each may face and should make based on what we know and what our doctors have to say.

I am likely the biggest offender in the confusion over these types of statements:
"*You MUST see an LLMD that had ILADS training. These doctors treat with antibiotics and usually don't have much training using herbs. There are LOTS of people that have been healed with herbs either self treated or found an alternative doctor to treat them with herbs. These doctors are not trained by the ILADS, they may even be Traditional Chinese Medical Doctors. These doctors can help you and cure you. IMHO you do not NEED to find an LLMD unless you are set on being treated with abx. "

I say different things to different people, depending on their understanding, openness to alternative treatments, and what they are hoping for. Is it absolutely necessary to see an ILADS trained doctor if you are going to heal from these infections? I was healed by a TCM practitioner that had never knowingly treated any of these infections before, so no. I did however have to do a LOT of the work in finding protocols, and figure out "where do we go from here?", when I was herxing and when I needed to detox more. She was a massive help in keeping my body functioning well while I healed though! She treated all kinds of issues that would come up as I was healing from these infections and I couldn't have done it without her. The nearest LLMD to me was a 15 hour drive each way. I was too sick to travel that far.

There are some doctors that are capable of being open minded enough to just follow Dr. Burrascano's paper on how to treat these infections, but they are not skilled enough- have enough experience to recognize herxing, or understand what combination of abx or herbs or whatever to help a person heal when they can't tolerate the "regular" protocol. Or, when there are serious complicating issues, like MCAD, MTHFR mutations or other issues that we can have.

As to your question about inflammation - Lyme is an inflammatory infection. It creates inflammation in between our cells. If you have any questions about how your diet is affecting the amount of inflammation you have - drop those foods back out of your diet for a week - you'll know, believe me.

And, I want to say this again - no one can look at a person and say "you've been in treatment long enough, you're healed". If you have symptoms (other than a few very minor tingling or numbness in patches), then you likely need more treatment. Inflammation is not one of those minor symptoms.

The good news? You can easily finish your treatment on your own if necessary. Many here do that.

My doc (LLMD) says no one is cured, it is always remission and any major event in your life can start up the bacteria again.

My hardest chore in my healing is being patient. I have rarely been sick, never even had the flu. Hangovers that I deserved in my hussy days many moons ago, but it is difficult to know that this is not a cold and will not just run its course and be gone in a week. I expect to get better each day. Then I get apprehensive and will cause myself stress. This will exacerbate my symptoms.... So, more than antibiotics, herbals, diet or detox my huge prescription is patience, with a capital P.

I can scare myself if I think where I would be without this site.

How to tell between Lyme symptoms and symptoms from a ton of other things. Mycoplasma, EBV, Candida, Thyroid, adrenals ext.

Bottom line is there is really no way to tell for sure.

Mpostelnicu-

I think I agree with you regarding

"If your immune system would be a bit more powerful, it will gain the edge. So the only thing you need to do is tilt the balance in its favor. You can do this with immune-stimulant and anti-inflammatory herbals. That's why these herbs work better than ABX."

There are other things to help your immune system also, diet is a good example. Also, this is where LDN would come into play. I have been on that for about a year now and I believe it is helping the "immune-stimulant" side of things.

According to this philosophy you don't have to have complete symptom resolution before stopping treatment. There is a time where you can switch your efforts if you think you have the bacteria counts low enough.

Thanks for your reply.

My thoughts of being healed are, no symptoms. If symptoms are still present, chances are a pathogen is still present.
In order to be healed(no symptoms) one must take out biofilms, any infections, toxicities, and damaging emotions(the mind is always listening, you think sick you will be sick) to be able to function.

If all of these are removed sufficiently, the body can take back control and re-balance the organs and kill off bacteria, on its own. No drug or supplement can do this. According to LymeMD, the best drug combinations can only kill up to 85% of bacteria-in a test tube. There is no way to know what percentage of bacteria are killed in the body. Someone who has less stress, infections, and toxicities will kill off more bacteria much faster than anyone who is very toxic or stressed. 85% in a person, could only be accomplished in a better case scenario. If any percentage is assumed on someone, it will not apply to everyone. Chronic disease is different for everyone. Some people respond well to treatment and others do not, its not the drug or herb combinations. It is the strength of the body that controls how sick we are.

If other infections are still present after treatment, borrelia most likely will be too. It takes the body on top of treatments to get rid of lyme disease. If the body hasn't finished off all of the infections, chances are ALL of the infections are present. Some will just be in a higher number than others.

No one can tell you if treatment is sufficient. Only your body.
In a healthy body, all symptoms will disappear. Nerve damage, brain damage, rashes, inflammation, etc can all be healed. The body is smart, it can heal itself very well.

I think one of the biggest mistakes people make are time related. Western blot and ELISA tests for lyme disease measure immune system reactivity. If your body is fighting it, the results will at some point come back positive(in most cases, the tests aren't great). In fact you should expect at some point to have no symptoms and test positive. To achieve no symptoms and to be rid of an infection, your body will have to do its own fighting. That is what the tests can show. I also think we can still have an infection and no symptoms. It takes a long time to be rid of an infection.

If the body can stay functioning at a high enough gear for long enough I believe 100% cure can be achieved. That's a big catch though, we have no idea when or truly if the body gets rid of all the bacteria. It may take 2 years for the body to finish the infection AFTER being symptom free. If during this time anything overly stressful happens or the body functioning becomes depressed, the infection will persist unseen.

Two months symptom free, in my opinion, may be a good enough time to finish with abx or bacteria killing herbs(idk), but it is not enough time for the body to heal all of the damage. I personally think the body fights infections much longer past becoming symptom free.

Another thing to remember is the no one gets sick with a healthy body. A healthy body can send out immune cells soon after a pathogen enters the body, killing all of them is easily possible.
A sickly or toxic body will not be able to do this.
One thing I would like to point out about borrelia is-it does not reproduce quickly. A healthy body should be able to take out all of them upon infection, not months or years later after the infection is well established.
A body toxic with heavy metals, chemicals, junk foods, plastics, etc will not be able to function at its highest. Anyone who is capable of achieving remission, in this state with, with abx is bound to relapse because the body probably could not finish off the infection.

After a chronic illness state, the body will have persistent symptoms, nerves take especially long to heal. A healthy diet can greatly bring down inflammation. On top of that, if all of the blocks like toxicities are removed, inflammation will go away entirely. So any inflammation caused symptoms should totally disappear. There is certainly more to say about which symptoms are most likely to persist because of damage vs an actual active infection. This will vary person to person.

Hope this was helpful!

I'm so sorry, DB, I got side tracked yesterday with chores here at the house and by the time I was done, I was literally too tired to think straight!! I didn't want to risk giving you false or confusing information - and now I'm glad I didn't!! Don posted!! LOL! Don used to moderate with me, so I get to tease him a bit!!

gfields said...

I was curious how exactly immune-stimulants work. Assuming that the immune-stimulant is an herb, so you ingest the herb, and it tells your immune system to hurry up and produce more white blood cells or something along those lines?

Yes. Let's take this research paper from Sweden, for example, about Cat's claw, a common herb used by lymies, and its effects on the immune system of mice and humans:

"Female W/Fu rats were gavaged daily with a water-soluble extract (C-MED-100™) of Uncaria tomentosa supplied commercially by CampaMed at the doses of 0, 5, 10, 20, 40 and 80 mg/kg for 8 consecutive weeks. Phytohemagglutinin (PHA) stimulated lymphocyte proliferation was significantly increased in splenocytes of rats treated at the doses of 40 and 80 mg/kg. White blood cells (WBC) from the C-MED-100™ treatment groups of 40 and 80 mg/kg for 8 weeks or 160 mg/kg for 4 weeks were significantly elevated compared with controls (P<0.05). In a human volunteer study, C-MED-100™ was given daily at 5 mg/kg for 6 consecutive weeks to four healthy adult males. No toxicity was observed and again, WBC were significantly elevated (P<0.05) after supplement. Repair of DNA single strand breaks (SSB) and double strand breaks (DSB) 3 h after 12 Gy whole body irradiation of rats were also significantly improved in C-MED-100™ treated animals (P<0.05). The LD50 and MTD of a single oral dose of C-MED-100™ in the rat were observed to be greater than 8 g/kg. Although the rats were treated daily with U. tomentosa extracts at the doses of 10–80 mg/kg for 8 weeks or 160 mg/kg for 4 weeks, no acute or chronic toxicity signs were observed symptomatically. In addition, no body weight, food consumption, organ weight and kidney, liver, spleen, and heart pathological changes were found to be associated with C-MED-100™ treatment."
www.sciencedirect.com/science/article/pii/S0378874199000707

Similar findings about Andrographis
www.sciencedirect.com/science/article/pii/S1567576906003869

gfields said...

I thought your body regulated that on its own by identifying an infection and then sending signals to the immune system or lymphatic system to produce an adequate amount of killer T cells or whatever to fight off the infection. How do herbs come in to play to help the immune system?

Yes there is for example an antigen transporter protein system (C4b) that gets to the place in the lymph where germinal centers are born and presents the antigen, that's the place where long-term humoral immunity is developed.

Well what if Borrelia will somehow mess up with this transport system (C4b binding protein) and at the same time infect the lymph nodes, producing lots of inflammation exactly where these germinal centers are produced. I'd say chances are this mechanism of signaling will malfunction and the body will not be able to mount a serious immune response.

The fact that Borrelia messes with C4b but also produces other complement-inhibitory proteins, is documented by several research papers
www.sciencedirect.com/science/article/pii/S0161589009008554
www.sciencedirect.com/science/article/pii/S1877959X12001240
dx.doi.org/10.1016/j.pt.2012.12.001

Furthermore, sadly, this messing with the immune system greatly affects its performance against any pathogen, not just Borrelia, so you become immune-impaired (not as much as in case of AIDS, for sure) , enough to get some normal flora inhabitants like Candida, or some intra-cellular viruses you acquired in childhood (EBV, CMV, Coxackie, etc) to start replicating again out of control. In the study mentioned below, they have shown mice infected with Borrelia and receiving an influenza vaccine, no longer develop immunity to influenza virus.

journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004976
have a look at the Discussion section, they discuss the possible causes of this immune status, including C4b , inflammation of the lymph nodes, etc.

Anyway, at least for the moment there is scientific evidence that taking anti-inflammatory and immune-stimulant chemicals (herbs/whatever), over a LONG period of time, may help in some way overcome this chronic state of the infection.

Hope this answer helps.

Post Edited (mpostelnicu) : 11/11/2015 4:08:19 AM (GMT-7)

FYI-Thyroid and lyme.

I'm surprized at the lack of thyroid knoledge from some LLMDs. Anyone with lyme and low thyroid should demand thyroid antibody testing, TPO and TgAb for Hashimoto, (and TSI for hyper-Graves).

Once (if) these develope, then you are dealing with autoimmune thyroid that usually has a mind of its own once it starts. This is not the same as hypothyroid without the antibodies, which heals, one the cause is "fixed". Many issues can cause auto immune thyroid- infections, leaky gut (with or without gluten issues), candida, many reasons.

LDN is knon to help some with this, I will find out next year.

The antibody limit level is a wierd thing. Over the limit and they call it autoimmune dysfunction. How the limit level # came about, I have no idea.

High antibody count is obiously autoimmune (triple digits over the limit level).

Low antibodies that are present but under the limit, seem to move around in some people.
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Thyroid info aside, I find this post (healed?) an interesting topic. Most LLMDs are only guessing, they dont have some mighty upperhand knowlegde as some almost seem to assume, these people are only human making their best medical judgement.

I do belive that long term lyme can leave you behind and damaged- once autoimmune begins there may be no clear end or feeling great again for some people. Other illnesses did this, like polio for instance, once that infection was gone the damage remained.

there should be a limit range. Like other thyroid tests, this # depends on the test machine used- it varies. Odd but tru.

TSH ranges are an agreed thing by the american thyroid associaion or whoever its called. they have been updated like 8 years ago

HI Happyjo~
I believe my doctor is basing his diagnosis on the treatment I have completed, not necessarily the time I have treated. Also, on the progress I have made. I still have some symptoms, but they are much less and farther between. I am able to live and function at I believe 90% most days. I still have some bad days though. My doctor is still treating regarding my thyroid. We are working on getting my T3’s at optimal levels. All other thyroid levels are good. I am also continuing to take LDN 1.5mgs nightly. I believe this is getting my immune system in working order. I have the MTHFR mutation and will continue to treat that. I also will continue to use an infrared sauna 2-3 times per week.

Going forward I believe that my current doctor is done treating me. I, however, am not done. I am switching to another practitioner to help me rebuild my immune system and to help me create maximum health. But I am done “killing bugs”. After posting this thread and getting all of the wonderful replies I now feel confident that this is the road I need to follow. Prior to posting I was feeling very scared and apprehensive, which is why I posted. I have read that you can “kill bugs” too long and this can have a negative effect on your recovery. I believe I am at that point.

I hope that I can post in the near future of my success in being “cured”. Time will tell. If I am going down the wrong path at this point, what I gain is still more than what I lose.