Posted 7/23/2017 12:31 AM (GMT 0)
Glad you are felling better. Lyme can become an overly complex frustrating maze. It's important to remember that a vast majority of the people infected take the medications as prescribed and get better. It doesnt seem that way by looking in online forums but if you talk to people who have healed, and even LLMD's they will tell you the same. The problem is these people never take the the time to post on forums, start blogs or do newspaper interviews because they go on with their lives, so looking online it can seem like every person with Lyme becomes chronic and never heals, but this is definitely not the case.
The people who seem to have the most success are very straightforward and matter of fact about their treatment. They take a simple layman's approach and dont delve too deeply into the overly complex world of Lyme. They simply put their faith in their doctors and trust them to get them better. And in most cases they do.
Once you look too deeply, you end up constantly chasing your tail over many years and you open a pandoras box that you can't close. Trust me thats where I am now and you never want to be in a place of such confusion and over analysis. I am avery analytical person who tries to consider all sides of an issue and I think this has hurt my treatment the most. I am in a place of information overload and paralysis by analysis because there is so much contradicting information and drawbacks to any treatment approach. All I know is I am still not healthy. I wish I could erase everything I have "learned" about this disease and just start again from layman's perspective. This is the advice I would give to my former self at the moment I got sick 2 years ago.
Its important to realize the word "Lyme" is a very loaded term today with numerous overlapping and related conditions, and this creates serious communication and definition problems the moment you put the word "Lyme" into your google search.
Think of it like a tier system. Say there are 4 tiers.
Tier 1 is everyone who ever gets Lyme. Hundreds of thousands of people every year in the US alone. A vast majority of these people heal and never think of lyme again after taking 30 days of doxy. Hard to state numbers but this is probably 80-85%% of people infected every year. Since you were treated so quickly at the first appearance of a rash and the very recent onset of mild symptoms, there is no reason to believe that you arent part of this vast majority.
Tier 2 is people who take Doxy and dont heal completely, or who do not realize they are infected in the early stages. They may take another month or two to heal, or they may pursue an LLMD who puts them on a combination of antibiotics. Most of these people also heal within a few months, but again don't post online about it or look further into it because it isnt a a big deal in their life. Tiers 1 and 2 probably cover over 90% of people infected every year.
Tier 3 is people who continue having symptoms for a year or more, continue to treat with an LLMD, and start having other health complications that may or may not be related to Lyme. They begin to troubleshoot and wonder why treatment didnt work and start looking into possible coinfections and other factors. Over time most of these people also heal. Some post online about their experiences, but the ones that finally heal often do not continue posting because they want to get on with life and leave the experience of Lyme behind them. You will find a number of Lyme blogs that just suddenly end. Not because they died, but because they finally healed and just stopped posting and constantly thinking about Lyme.
As you move through the tiers, the waters get muddier and muddier, and soon you find yourself in a place of utter confusion. People start wondering why they didnt heal and this is where it can get quite obscure. They start looking into the different forms of Lyme. Is it a cyst form? is it a biofilm? Maybe it's not Lyme at all. Maybe now it's coinfections or parasites or mold or candida or viruses or morgellons. Maybe its a gene mutation that affects detoxing. Maybe its heavy metal poisoning. Often times these issues become overlapping and can also be triggered by a Lyme infection. Maybe antibiotics don't heal this form and now they look into herbal tinctures or even stranger unproven treatments like rife machines or stinging themselves with live bees or even drinking chlorine, or IV peroxide or IV silver. The more desperate people get, the more things they will try and they can easily fall victim to quack doctors and people who prey upon the desperately sick. Also since the testing is so innaccurate and unreliable, there is no way to know if you have been healed and you can only really base this on how you feel. Some people continue treating for years and years becuase they have a few stubborn symptoms and want to get rid of Lyme completely, eventhough these remaining symptoms may have nothing to do with Lyme.
Then there is Tier 4. These are people who have treated with Antibiotics for years on end, and dont get better and often get worse over time despite treatment. They have tried many different treatments and many are debilitated from the illness itself and sometimes from the harm that long term antiobitics can do to the body. They are desperate and confused, and at some point they have no idea what is making them ill for so long. Things become so complex and overlapping that it becomes nearly impossible to make any progress in treatment. However many of these people STILL do heal after finding the right combination of antibiotics or identifying the coinfection that is causing their illness and treating it properly. These are the unfortunate few who can no longer work, go into debt, remortgage their house and can spend hundreds of thousands of dollars and go through dozens of doctors trying to get well. You hear a lot of these horror stories on the web, but in the grand scheme this is a very small number of Lyme patients. Many of these people are online posting blogs and commenting on message boards, and when they do finally heal, they stop posting and get back to living, never wanting to think of Lyme again.
What is left on the internet is their years long struggle and their daily postings from when they were at their worst, and again this creates the impression that Lyme is incurable because these are a majority of the people that take the time to post and continue seeking answers, so this becomes most of the information that is available. This may sound harsh, but if you are trying to start a successful business, you wouldnt go to a bankruptcy chatroom to get advice. Likewise, since most Lyme chatrooms are people still struggling, you are getting advice mostly from people who havent healed themselves.
A very small percentage seem to never heal for what reason we dont know, again by the time you reach tiers 3-4 and beyond, it becomes extremely complex and its hard to say what exactly is causing symptoms, whether its ongoing Lyme, a condition that was triggered by Lyme, or something completely unrelated. Its certainly not their fault, and they only want to be well like the rest of us, but the fact remains that these are people who failed treatment. These people are over represented on the internet which creates a false impression of what Lyme is most of the time, and that there is no hope of getting better.
These tiers, 3-4 and beyond are most of the people on sites like this. I am probably somewhere in tier 3, so take my advice with a grain of salt as well, as I have not healed. This is not somewhere you want to be. I find it helpful to come onto to sites like these to try and understand how people in similar situations deal with more advanced Lyme issues. Sometimes just to vent. If for no other reason, I find it helpful to talk to others going through Lyme.
I will point out that the number of people who post here with any regularity is much less than it was when I began following the forum back in 2015 when I first became sick. The number of people posting to any lyme forums is very small overall, and you will notice that most of the posts are usually the same 10-15 people on any given Lyme site. THis tells me that most people have healed and are no longer desperately seeking answers to their Lyme issues, and this is a good thing, enenthough they dont follow up and give the rest of us hope, it tells me that there is hope, because likewise if I healed tommorrow, I wouldnt be scouring the net for answers anymore either. Most of the posted questions are from new members like yourself who have joined in the past year. Most of the answers are from a few veteran members who have remained, many of whom havent healed.
I say all this to be real with you and get across the point that if you are in tier one, this is really the last place to be looking for medical advice. I agree with the advice that you have been given, and it certainly wouldnt hurt to extend your treatment to perhaps avoid future complications. Girlie's suggestion is good. Go to a minute clinic, dont acknowledge you have been treated, and get another course if your current doc refuses. At most you should do 90 days, stop, and see where you stand. Whether you are chronic for many years, or just infected, the only way to measure progress is based on how you feel. If you are feeling better you are making progress and healing just like the vast majority of patients who are treated at the first signs of symptoms and a rash, and there is no need to complicate things by looking into advanced contradicting research or basing your experience on the relatively small percentage who have failed treatment for one reason or another. You said yourself you are feeling like yourself again, so just treat and leave it alone. Don't question every minute symptom or look on boards like this to read about others who are asking about every minute symptom. I assure you, its not helpful.
If I were you I would take a very simplistic approach. Ignorance can really be bliss when it comes to this disease, because the more 'informed' you are the more confused you become because to be quite honest the information out there just isnt that good, and since the disease can be so individualized, others advice though well intentioned, usually just isnt very helpful.
Find a doctor you can trust and put your faith in them. Yes being your own advocate is important but with a disease as complex as Lyme this is impossible and at some point you have to place your bet and trust the experts.
But just remember it doesnt HAVE TO be complex. Go with the sheer numbers. Bet on the larger percentages to win. If a team is an 80-1 favorite, put your money on the 80 team and dont spend time worrying about or studying the 1.
Dont get caught up wondering if you are having a "herx" or if it's a new symptom, because honestly, no one can answer that accurately. Dont worry about herbs or detox or genetic issues. Dont worry about parasites or viruses or candida.
Simply take the medication you were given as prescribed and try to stay off sites like these. Got to deer hunting, or gardening chatrooms, or other places that have members who may have been exposed to Lyme, but dont directly deal with Lyme, and read their stories about themselves and others they know who have had the disease. Most of these show people who were sick for a few weeks or months and then healed quickly and permanently. Go to general treatment/ drug review sites and see the same. But personally i would stay away from Lyme focused sites, until it becomes absolutely necessary, as this will just complicate things for you too early. I wouldnt use these sites until you are unlucky enough to find yourself in the tier 3-4 group. Then if you are at a loss and still need answers, come back.
But in the meantime just take your doxy and go on living life. Again, I have read about and talked to MANY people suffering from Lyme in all it's different forms. The ones who seem to have the most success take a very pragmatic simplified approach to treatment and dont question everything. If they feel better, they move on and leave it at that. If they dont fell better thy treat again. The ones who arent successful are the ones who have gotten bogged down in the complexity of the disease. I think mental approach and simplifying things has a lot to do with the healing process. You will more than likely be part of the majority. COme back in 4 weeks and tell us you got better and dont sweat the small stuff.