I Think I Have Lyme Disease but My Doctor and Lab Tests Say I Don't
How to Confirm Your Lyme Suspicion and Get on the Road to Healing
In a world where no Lyme test is 100% accurate, and not every doctor acknowledges chronic Lyme disease (i.e., MSIDS), you have every reasonable right to continue to think you have chronic Lyme disease, even if your tests continue to come back negative. Yes, even if it’s your fifth negative Lyme test or your fourth Lyme doctor to say you’re crazy and it’s all in your head.
There are quite a few legitimate reasons why a Lyme test will continue to come back negative, even when a person actually has the Lyme bacteria. There are also many legitimate reasons why a Lyme test will continue to come back negative, such as not actually having Lyme, but a person’s symptoms can still match the condition of Lyme to a T.
What the heck is going on and how do we simplify, as best as we can, something that has really grown unnecessarily complex?
In a first world country, in 2017, where science is revered as the most powerful method and tool humans have to obtain truths of our world, you should be able to go to your family doctor, get an accurate test for chronic Lyme, but even if the test comes back negative, not be passed off by that treating physician with the words, “everything looks good”, and left to your own devices.
Unfortunately, this is how many chronic Lyme patients are treated, and this sets the course for a long series of expensive, unnecessary, and frustrating events, with a likely major downward spiral in time. But all of this is unnecessary, because all you want to know is if you have chronic Lyme, and if you do, how to effectively treat it so you can get on with your life. Is that such a difficult accomplishment in 2017?
Now that You’re on Your Own
Okay, so you’ve seen at least one professional physician about your symptoms, had one Lyme test yield negative results, still have suspected Lyme symptoms, and you’re on your own. What do you do?
Well, the first thing to do, if your doctor hasn’t already recommended it as the next step to your negative Lyme test, is to make sure you are in fact not dealing with any other health conditions that could explain your suspected Lyme symptoms. Lyme, as you’ve likely heard by now, is referred to as “the great imitator” because its symptoms can easily be mistaken for other health conditions, and even vice versa.
It’s so important to make sure that you’re not dealing with another health condition that you’re mistaking for Lyme. Yes, the internet is very helpful in that it has and continues to help people realize they have Lyme when they never thought to consider it, but it can also be a double-edged sword, and the power of suggestion is, well, very powerful. You don’t want to be easily convinced you have Lyme when you may in fact have another undiagnosed health condition.
Just like not knowing you have Lyme when you have it can lead to many months or years of never getting better or improving, the same applies to assuming you have Lyme and you haven’t been cleared of other medical conditions that could also reasonably explain your symptoms.
Now that You’re on Your Own and Confident You're Not Dealing with Another Medical Condition that Could Explain Your Symptoms
Now, you’ve seen a doctor that thinks you don’t have Lyme, the Lyme test they ordered that yielded negative results supports their conclusion, and you’ve had additional testing for other possible medical conditions that could also explain your symptoms, but they also have come back negative. The doctor says everything is normal, and lets you and your burning Lyme suspicion, on your way to lead the symptom-free life that hearing the words, “it’s all in your head”, just don’t provide.
For the moment, you’re on own your own with a burning suspicion that you do in fact have Lyme. Take a second, relax, and regroup. Acknowledge that you just did the right thing -- something that every person with your symptoms would have done -- in hopes of finding a cause for your symptoms. Unfortunately, you still have your symptoms, a burning Lyme suspicion, and no diagnosis or course of action to ameliorate the symptoms. What do you do and where do you go from here?
The first thing you should do is seek out a good Lyme-literate physician. No, you don’t need to spend $1500 for one, nor do you need to spend $20,000 to begin feeling better. While spending this kind of money may yield good results, it's important to know that not spending this kind of money can also. You shouldn’t have to take out a second mortgage on your home to treat a condition you’re not absolutely sure you have yet.
You can have all the money in the world, but it’s still no match for what good and effective knowledge and research can do for you and your suspected condition of Lyme. Take for instance Yolanda Foster’s endeavor to find what was ailing her. As someone who likely had near-unlimited funds, she still suffered for an unnecessarily long period of time. From her public documentation of her efforts to get better, it’s clear she’s spent a lot of money, but it wasn’t until a simple ultrasound showed that a 20 year old breast implant rupture -- that was leaking toxic silicone into her body -- was likely keeping her from getting better.
The point is that Yolanda's likely spent a lot more money on other treatments and doctors that’ve failed her, but a simple procedure that insurance likely pays for, coupled with a doctor who thinks outside the box, found a critical roadblock in restoring her health. Best to you, Yolanda!
❤️Turn a mess into a message....... We might have hit the jackpot by finding all this silicone from a 20 year old implant rupture through ultrasound mapping as shown in this selfie. Thank you Dr.Feng for holding my hand and leading the way #UncoveringTheMystery #ChronicLymeDisease #ExPlantSurgery @drfengclinic #MyHealthJourney #DeterminedToFindACure
A post shared by YOLANDA (@yolanda.hadid) on
There may be, for some people, a correlation in getting better from chronic Lyme and spending a lot of money in doing so, however, spending a lot of money to get better from chronic Lyme disease doesn’t always cause you to get better. In fact, under the wrong hands, it could make things worse. Correlation does not imply causation.
The Alternative Lyme Diagnosis Method
Once you’ve found a good, reasonably priced Lyme-literate doctor, who will entertain and work the idea that you may in fact have Lyme, consider provocation under their supervision. Provocation is the alternative to lab tests, where lab tests fail to support a Lyme suspicion, provoking a response from the suspected bacteria with medicine (e.g., conventional or holistic) can greatly move you closer to a solid diagnosis than a lab test ever will.
You’re sitting in your new Lyme-literate doctor’s office, with lab results from the past in hand, and you both highly suspect that you are in fact dealing with Lyme. Another Lyme test from a reputable Lyme specializing lab, such as IGeneX or Advanced Laboratory Services, might be on the table to consider if finances allow, but to confirm your new doctor’s suspicion that you are in fact dealing with Lyme, he’s going to place you on an supplement known as Samento.
Samento is a cheap provocation method for Lyme, for if you have a reaction to it -- a herxheimer reaction -- you can confidently say you’re dealing with Lyme. Of course, in addition, a positive lab result will solidify the diagnosis. You could also use A-L Complex by the Byron White Formulas.
Samento comes in a tincture and consists of the herb Cat’s Claws, but it's lacking in specific constituents from the untouched herb to supposedly make it more effective (another article, another controversy). Nonetheless, in a very simple to use and cheap supplement, at least compared to some Lyme tests, you can provoke the suspected Lyme bacteria within to help confirm any suspicions you or your doctor have about having Lyme.
Provoking the Lyme bacteria is something you can do on your own, but it’s highly recommended that you do so under the care of professional medical supervision. The reaction you’d receive provoking the suspected Lyme bacteria, which would confirm you have the Lyme bacteria, the herxheimer reaction, can be pretty intense and vary in intensity depending on the individual. Having a good Lyme-literate doctor on standby can really help make you feel like you’re not alone, provide you with recommendations for ameliorating the herxheimer reaction, and suggest the best way to move forward now that you’ve provoked a response and confirmed the Lyme bacteria within.
How to Provoke a Suspected Case of Lyme with Samento
As mentioned before, Samento comes in a tincture form, with a maximum dosage goal of 30 drops 2 times a day. DO NOT TAKE THE MAXIMUM DOSAGE OF SAMENTO IN THE BEGINNING. If you do in fact have Lyme and take the maximum dosage of Samento in the beginning, you could end up in the hospital with a severe herxheimer reaction -- not good.
To start in the morning on day 1, shake the Samento bottle good, put 1 drop into 4 ounces of water, stir for about 5 seconds, wait 1 minute, and drink. Do this 30 minutes before food. Since this is your first time taking it, be conscious of how your body reacts. Listen to it and be sure to jot down any changes in your symptoms.
If after taking the first drop, you notice no reaction at all, on day 2, repeat what you did on day 1, but now take another drop in the evening, again, 30 minutes before eating. So for day 2, you should be at one drop in the morning and 1 drop at night. Again, listen to your body and keep a log of any changes in your symptoms.
If you’ve still had no reaction to the Samento, then on day 3, take 2 drops in the morning and 1 drop at night. Continue to add 1 drop of Samento in this pattern until you have a negative reaction or your symptoms worsen and make you feel uncomfortable. If you’re able to get to 30 drops 2 times a day without any reactions whatsoever, the odds are good you do not have Lyme. Immediately report any negative reactions you have while on Samento to your treating physician.
However, just like lab results, provocation with Samento is not a 100% guaranteed way of diagnosing Lyme. If you have a reaction while taking Samento, use this information with symptoms and lab results to support your Lyme hypothesis, but if you don't have a reaction to Samento, don't entirely discount the idea of having Lyme just yet.
I Didn’t Have Any Reactions -- Good or Bad -- to Samento but Still Have Symptoms
If after reaching the maximum dosage of Samento (30 drops 2 times a day) you’ve had no reaction at all to it, then this is where a good Lyme-literate physician comes in handy. Based on your individual symptoms, your Lyme-literate doctor will recommend the next best route to traverse for you.
You may be dealing with mold toxicity in your home or place of work, you could have a serious nutrient deficiency or surplus of some kind, there might be a heavy metal issue or other infections just as serious as Lyme (e.g., babesia, bartonella, etc) -- yes, you can provoke these infections in the same manner as you did Lyme, but with other supplements -- or your breast implants may be leaking toxic silicone into your body. Of these roadblocks mentioned, you could have multiple or you could have one not even mentioned. This is where the good detective work of not just your Lyme-literate physician, but you as well, comes into play in determining what exactly is keeping you specifically sick.
Yes, taking on Lyme disease is a scary, lonesome, frustrating, debilitating, draining, and life-dismantling experience, but you can do this, if you try. You have to try! Because when you do, you’ll realize there is a whole community of people just like you out there. They’re going through very, nearly identical health experiences, with an amazing touch of compassion and support for each other.
As you continue to move forward in your healing, remember to keep things simple. There’s a lot of information out there on chronic Lyme disease and it’s so incredibly easy to become overwhelmed to the point of just quitting it all. Trust your instincts, question everything you read, and go with what makes sense.
It’s okay to fall into the Lyme world -- you just need to start by getting back on your feet. You’ll learn so many things about yourself that you never thought you’d see. But remember where you came from, and know that you can go back, but it’s going to take an unprecedented effort on your part. There will be times where you’ll want to give up, and there will be times where it gets too easy and you’ll feel great, but most importantly, keep moving forward throughout it all.
Sometimes you’ll need to be logical about your treatment and forcefully block the emotional chanting. Emotions are helpful in allowing us to cope with the human experience, but it is knowledge and the application of it through logic and reason that will ultimately get you where you need to be, or at least a little bit closer each day. “Baby steps”, in the words and tone of Negan.
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