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Lyme Diseases: Is It Curable & What Does That Mean?

10/23/2016

12 Comments

 
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I recently had an discussion about the word "incurable" being used when discussing Lyme Disease. This friend disliked that sentiment because she felt like it paints a negative light since many people do recover, and for someone close to her that word was upsetting hear (in association with his illness). We had a back and forth discussion about this very topic, which I wanted to expand upon here. It got the wheels in my mind turning as to what exactly goes into getting well from Lyme Disease, and what the word "cure" means to me.

The reason that Lyme disease is such a tangled web is because each and every patient is different. If you talk to an LLMD they will tell you that one treatment approach will not get all of their patients well. Treatment has to be tailored, and that's everything from the meds they use, to the kinds of supplements, to the kinds of support care, and even what needs repaired in the body. It's so complex, mostly due to the variables like co-infections, how long a person has been ill, how long it's been untreated, how far it's spread, etc. Each patient is an onion that needs to be peeled back and treated according to their needs specifically.

So what's the trouble with this model?

The way that Lyme Disease treatment is now is essentially survival of those who have the means, the money, and the access to the right Doctors. I can't even begin to estimate the out of pocket expenses incurred since I began my quest to wellness. If my parents didn't fork up money for hundreds of different trial medicines, supplements, etc then I truly believe I would not be here today. I have a body type that is highly sensitive, and very highly reactive. I have a Doctor who works with my sensitivities and has taken an approach to healing that is gentle and tailor made for me. This Doctor spends hundreds of hours a year at different conferences constantly furthering his education to help his patients with cutting edge treatment. This Doctor is also 100% out of pocket, because my insurance (and most insurance) does not cover his care. He is one of the best but his care comes at a large cost, not to mention an almost year long wait list.

I know people suffering, I know families suffering, and I know that it isn't fair to those left out in the cold. Just because I have the money, resources, or perhaps good fortune to find the Doctor or Doctors who will help find what works for me, and put me back piece by piece, it doesn't mean others have that same luxury. This is where the topic of finding a "cure" comes into play, because as of now healing from Lyme Disease is trial and error. It is trial and error in finding the right Doctor, and hoping he/she is close enough to get to them. It is trial and error in finding the Western/Eastern medicine to use that works with a patients body chemistry. It's trial and error in so many ways, that YES you can get well, but it takes a village and lots of research and many moving pieces to get there. And we have to acknowledge that not every patient has these luxuries. I see so many campaigns by people raising money for treatment because they can't afford the cost of what they need to save their life. It is utterly heartbreaking.

When I say I want a "Cure" for Lyme Disease, it's a cure that works for every patient, every time. A great example is looking at cancer. Even though many people survive cancer and live full healthy lives it is not regarded as a curable illness. The "cure for cancer" runs and fundraisers are widespread, and rightfully so. Until they can find a treatment that works for every patient and rids the word of cancer, making it an easily beatable condition, it will be seen an needing a "cure." This is how I view my quest as well, and I fight to find a cure that doesn't let anyone slip between the cracks.

I understood my friend's viewpoint that saying Lyme disease is "incurable" can be a tough word choice, because by most that word is reserved for things like AIDS, which is truly not curable. And I understand that in contrast many Lyme patients do go on to live full lives and feel well. So the word "incurable" can be tricky.. but there is a middle ground between "incurable" and "having a cure." That mid-ground is what so many large organizations are fighting for, such as Lyme Alliance. They are working to fund research to have a "Lyme Free World." Yolanda Foster often references finding "A cure affordable for all." This is the tone that many people have when discussing the sentiment of finding a cure for Lyme Disease, myself included.

Will some people still say it is incurable, and use that word to describe it? Yes, probably. But I don't believe the tone behind that is to be negative or deceptive. I've been asked before, "When will you be cured?" And this question is always a bit difficult to answer.

Which leads me to my second point..

What do I mean when I say "Cure?" What is my definition of a patient who is indeed cured of Lyme Disease? From what we understand about Borrelia, it can hide in biofilm, or cysts, or deep in tissue, that means that extreme care needs to go into staying on top of it. If the immune system drops down then it can thrive again, and that's how many people relapse. To me, a "Cure" means that it's gone forever. It mean's that there would be a treatment that would kill every last bacteria in every form in every part of the body so there is no worry or question of it EVER coming back. THAT is a cure. In a broader term it means accurate testing to catch the disease as soon as the patient gets ill, and it means better recognition with insurance so that all treatment is covered.

The thing here is that I speak to way too many patients for me to have a singular opinion. I can't pretend that just because I could hypothetically find a way to get well, that suddenly it's curable and fine. I have spoke to many patient's who were well and seemingly "cured" for years. And then divorce happened, or a large surgery happened, and boom they hit a full on relapse. We can't pretend that does not occur, because it does, and those people are a perfect example of why I will always fight to fund research for a CURE. Because we all deserve a LASTING cure, and a REAL cure.

In summary, I understand why the word "incurable" can be a hot button word for some, and disliked when it's used in relation to Lyme Disease. But in other ways I do feel that we don't live in a world which has a cure (by my above definition) for this disease. Right now, as I write this in 2016 it doesn't exist. Are there people who have recovered and stayed well for 10-20+ years? Yes. But those people are not the majority, and realistically it's not simple to get there. Those who did get there did so with lots of hard work, determination, means, and trial of MANY modalities. And until there are people who are left behind or left struggling, it won't be good enough. Even though I don't personally like to use the word incurable, I can understand why some do. To those who are in the thick of the battle field fighting each day without resources or help, it does feel like every definition of the word "incurable."

So until we have a cure I will continue to advocate for patients, and I will keep trying different therapies and treatments myself to help me heal and reach a state of remission where I am living a full life again. Each and every person who fights this disease is a survivor and a warrior in every sense of the word. And I believe deeply in my healing and your healing as well. But a desire for an ultimate cure will never end, and I won't give that up until that day comes... for everyone.

xoxo,
Christina


12 Comments
Angie
10/25/2016 11:00:05 am

Yes it is curable, my son tests Lyme free now and he was desperately ill. We went to Infusio Frankfurt Germany and now he is well!!

Reply
Christina
10/31/2016 05:53:00 pm

That's great to hear!

Reply
Linda
11/11/2016 06:55:50 pm

Angie, could you please email me your experience with Infusio? Including procedure?, waitlist?, $$$, etc. So happy to hear about your son. We have a family member with Lymes and would be open to traveling overseas for help. Thank you so much!

Reply
Linda
11/11/2016 06:56:56 pm

rnelson3128@charter.net

Sandy Halliday link
11/12/2016 04:20:45 am

For how long did your son have treatment at Infusio Angie?

Reply
Lea
10/25/2016 07:00:55 pm

I agree 100% with you. Unfortunately most Dr's treat their patients all the same. Lyme patients are very different. These various co infections come out of hiding once and a while and need to be treated effectively. I go for Bicom treatment every 8 weeks and my testing varies at each appointment. It is most definitely like peeling an onion and every layer is delicate and different. I too would love to be "cured". After 13 mos of treatment I am doing much better....but I await the day my tests are negative for all Lyme bacteria/co infections.
Thank you for advocating and bringing awareness to all! Keeping the discussion going is a must.

Reply
Christina
10/31/2016 05:53:57 pm

Yes, ditto to everything you said! Thank you for reading & I pray for your continued healing as well!

Reply
Lori Geurin link
10/31/2016 11:03:48 am

Hi Christina,

I, too, agree with what you've said above. I've heard the onion peeling example other times, and it's a good way to explain the complexities of the Lyme patient.

It breaks my heart when I see patients trying to raise money for their treatments too. It's disheartening that our treatments are typically not covered by insurance. And because no one treatment works for everyone, it can take so much trial and error to find one which addresses symptoms. And then, there are all the autoimmune conditions and health problems we're dealing with as a result of the Lyme and co-infections.

I've noticed a bit more about Lyme in the news in the past couple of years. It's spread through the entire US and continues to affect more and more people. I seriously cannot believe this American health crisis has gone on this long with the CDC sweeping it under the rug for years.

I love the caring and support I've found in the Lyme community and hope others can experience this too.

Thank you for sharing your point of view. I'll be back to visit your blog soon!

Reply
Christina
10/31/2016 05:52:38 pm

Thank you so much for stopping by & leaving a kind comment! I do agree, the support in this community is so wonderful and so helpful. I hope that the news continues to discuss this epidemic & that things can change.. Because you said it perfectly, it really is swept under the rug!
Thank you again :)
-Christina

Reply
Rita link
11/12/2016 12:27:43 am

I pray for the day when health insurance will cover the costs of the alternative or integrative approaches , which are often the only hope after allopathic methods have failed the patient. With Lyme, my understanding after listening to a number of podcasts hosted by Jonathon Landsman of Natural Health 365 - it is not only spread amongst family members via saliva, but it is also carried by every biting insect. This was big news...no bullseye rash needed, and indeed a person can be continually reinfected each time they are bit by a mosquito. I don't want a toxic "Lyme vaccine" but as you say, some sort of recipe that one can take on going as a proactive approach to prevention of reinfection would go a long ways for everyone affected, or not yet affected - as that seems to be the direction we are going.

Reply
Susi Lee link
12/15/2016 02:44:40 am

I think the professional think lyme is incurable because many patients don't recover from antibiotic treatment. Lyme gets more difficult to treat the longer you are infected. The pathogen adapts to the antibiotic (doctors favorite trick and most of them only know this one trick). Lyme bacteria will never adapts to colloidal silver though. Given time, the bacteria will hide in deep tissues or under hardened shell of biofilm. I went on Amazon to look up product and people really improve their condition with bentonite earth, Interfase Plus (a biofilm disrupter),

If you dont draw the pathogens from where they are hiding, the lyme infection will never be cured. I don't think medications can do that well. Bentonite earth, for example, draws the bacteria out of the body through external application of the mud on the spine and lymph nodes.

Just because a lot doctors don't do a good job doesnt mean its incurable

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Nurse Jon link
12/15/2016 08:55:39 am

Interesting, very interesting.
While I am new to this and helping people with it (1 year in), I have come across some commonalities and differences.

1) As was said, everyone is different. Each treatment has to be tailored to each person. To some degree, each person will have to become their doctor. This is because of ...

2) to prevent resistance to treatment, it needs to be varied and switched from month to month or even weekly. People hit plateaus and need to switch when this happens.

3) Lyme and the various other bugs reside in condos called Biofilms. Not all are in the biofilms at the same time. Some will be out partying. This is why the treatment will take months if not years. Biofilms are actually quite beautiful.

4) Since they screw into our cells, which is why we can say if you got it, you are literally screwed, it will take a treatment that gets to a cellular level. This is why new onset can be treated with antibiotics but chronic cannot. To understand the effectiveness of drugs, look at NNT or Numbers needed to treat. (theNNT.com). Also note the NNH or numbers needed to harm.

5) Cure vs Remission (submission). While the doctors I work with on the natural side do not believe there currently is a cure, we do believe there is one in the wild, we just don't know about it yet. It is interesting that the doctors who sell products or expensive practice are the ones saying there is a cure. The average person pays about $100,000 to teat Lyme. You may pay it in lost wages or treatments. While those of us have not seen anyone with Lyme have a blood test with no bugs in it after treatment, we believe it is possible. However, till then, you can get the bugs in submission so that you will have no symptoms.

6) One thing all agree on, it is essential to maintain fluid and electrolyte balance. This means drinking purified water and taking unprocessed salt. It is called the Water Cures Protocol. It is free, easy and sustainable. (www.WaterCures.org)

7) Don't spend any money on any of the $500 treatments. They probably will not work. This is not to say you will not spend several hundred on supplements over the the months though.

One of my recent findings...in at least two people...megadose vitamin C produces dramatic results for a couple of months...then plateau. But, it is a couple of good months. However, there were side effects. One got gout in one toe. This was quickly resolved with magnesium bicarbonate (very easy and cheap to make).

Another got chest pain...Lyme Carditis...this resolved in a week with ALA and NAC. This may have been caused by a thallus, or what I believe to be the lining of an arterial wall shedding and causing an occlusion until it could be dissolved with the alpha-liopeic Acid and the L-lyseine and NAC. (Vitamin C / Linus Pauling Institute)

Ginger Tea (made from US not China Ginger root) helps some with cold feet and hands...until they plateau. Don't freeze it...or if you do, don't ever thaw it. I found it becomes far less potent once frozen and becomes mushy when defrosted.

Eat a whole garlic ever day for 4 days on and 3 days off (cycling the treatment). To get the best benefit and make it easier to peel, lay each little finger on a cutting board and with the side of a knife, smash it and wait 15 min to cut up and put in a meal.

Two went into A Fib. One (81 year old, 1 year infected) even ended up with massive edema and was hospitalized. He is out and back up and able to function. The other cardioverted or went back to a normal heart rhythm after three days of treatment. Did the vitamin C bring this on or would it have happened anyway? We don't know. But they all improved dramatically on the megadose vitamin C. Oh yea, they used the cheapest chewable C, not the more expensive pill forms. But do not get the ones with sugar, as it inhibits the absorption of AA.

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