Thursday, February 26, 2015

Lyme Disease Brings Out the Quacks

I'm aware that the title of this post right off the bat may offend many that are afflicted with Lyme Disease. But before you jump to any conclusions, I believe it's important to hear me out. Lyme Disease is obviously unique in the sense that though the late stages of this illness are legitimate, the majority of mainstream medicine continually states that they do not believe in the existence of the chronicity with Lyme. This puts the illness in a very precarious situation. Many of us have to seek help that is outside the mainstream medical community. It's a scary and daunting task, but many of the doctors that treat us are amazing in what they do. They continually put their medical licenses on the line to treat many of us with medicine that has been scientifically proven to improve our condition. The science is clearly in its infancy stage, but the research that goes on behind the scenes has been tremendously beneficial for all of us.

However, there's clearly another downside to the dangers with Lyme Disease not being recognized by the majority of the medical community. It allows dangerous, uninformed, and even greed driven medical professionals the ability to take advantage of desperate and sick patients. There is no governing body that regulates or oversees the treatment of Lyme Disease in a fair manner. This leads to medical doctors potentially losing their licenses whether they treat this illness in a legitimate manner or not. Since we have to go outside mainstream medicine to rid our bodies of this monster and pay out of pocket, we open ourselves to potentially dangerous possibilities. There are doctors out there, who are not well versed enough in the treatment of this illness, but will take advantage of you regardless. I was one of those patients who has been taken advantage of by those who are not fit to treat Lyme Disease. I would like to make sure that no one has to endure losing all their financial capital to those who are in no position to get you well.

Envita. I remember seeing the name in an aesthetically pleasing font flashed across their website. Most Lyme physicians didn't have information on their medical practice online, so I was excited to see the wealth of information contained in the website for Envita. They were a medical facility located in Scottsdale, Arizona, a mere twenty minute drive from my home. I found almost any answer I had to any questions regarding the illness I had recently been diagnosed with. I was ecstatic, I would not have to leave my home. The best treatment facility for Lyme Disease was in my own backyard. Words could not fully encapsulate the joy that I had when I realized for the first time I may be able to get better.

I called them up quickly and scheduled an appointment to meet with a very friendly patient-care coordinator. When I went there I was greeted by Rich, a man with a smile similar to a crescent moon that nearly engulfed his entire face. He relayed to me how I was in good hands finally and that I was firmly on the path to wellness. We sat in a room while Rich went over the specifics. First I would meet with their Lyme doctor on staff, Dr. Korn. Then once the treatment plan was devised he would outline the costs and schedule an appointment to get a port inserted in my chest for IV treatments. My father was very skeptical, but Rich assured us that God was on our side, and thanks to Jesus we would find our way through this mess. Jesus was great was said more than a couple times through the course of the conversation. I grilled Rich and asked him what his success rates were with Lyme Disease patients.
"90-95%!" he said with that same smile consuming his face. He said that he witnesses patients get well, and it's amazing to watch it personally. He said that within just two months of treatment I would be feeling significantly better, to the point where my good days would far outnumber my bad days. With a stomach that was ripped apart, and fatigue that made it hard to stand, I fed off his positiveness and agreed to undergo treatment with Envita. Before we shook on it I had to ask, "Guys, I can't go through another treatment. This has to be it. You have to be honest with me, well this be the last doctor I have to go to to get well?"
He simply replied that of course they'd get me well. God is with me and was looking after me and I'd feel like a new person by the end of my treatment.

When I met Dr. Korn, I initially liked him, though I had my reservations by the end of the appointment. He gave me a decent exam and had devised a medical treatment plan that sounded reasonable. I didn't fully understand why I needed to be on all the concoctions he had prescribed, but he advised it was important. After that he went on a rather extreme tangent. His brother had Lyme as well and it was clear that the government had created this illness. Not only had they created this illness, but they were spraying it in the air possibly with the planes that emit chem trails. I couldn't trust my government, not only had they also created AIDS he told me, but they were also solely responsible for the attacks of 9/11. He could no longer be in mainstream medicine because of the corruption involved. This was the only place that let him practice medicine appropriately. Ever supplement he gave me, he essentially took himself. He rarely ever ate, he merely took copious amounts of supplements and drank tea throughout the day. I was worried, but I had been left to rot by all the doctors I had seen at this point. Maybe there was something to what he was preaching. I decided to look past it for now and start their treatment protocol.

I met back with Rich, who relayed the expenses that would be involved with this treatment, $45,000. The look on my families' face was horror. We discussed taking things away to lower the expense, but we all felt guilty of robbing me of a malady that may help me. As a family we had just been given an inheritance and had the means to stomach this blow, but it was tough. Rich still praised the powers of Jesus and God throughout our second meeting. He had actually given us a discount and there was not a better protocol for Lyme out there in the world. He had witnessed it himself, his sister worked at Dr. Jemsek's clinic (top Lyme doctor), and their success rates were nowhere near as high as theirs. I became more skeptical, but I wanted to believe him so badly. I didn't want to endure years of grueling treatment, throwing the carrot of wellness in only a couple months was to hard to pass up. My family discussed it and I agreed to start their protocol.

There I was the first day of my treatment. I was stationed in a room with other Lyme patients as we all received a number of IV's throughout the day. Hydrogen Peroxide, massive amounts of Vitamin C, Blood Ozone Therapy, IV antibiotics, and chelation. The blood ozone was especially creepy as they took a large amount of blood from us, oxygenated it, and then gave it back to us intravenously. We were all a bit skeeved, but we were all desperate and chose to trust the process. I enjoyed being in the company of other Lyme patients, it was great to have others to relate to. We were all scared, but we formed a little family and looked after one another. We were all especially infatuated with a young sixteen year old girl there. She had lost over seventy pounds due to Lyme disease and was now debilitated to the point where she needed a wheelchair or walker to move around. Though she was going through absolute hell, she always had a smile on her face. She was bright, witty, mature, and extremely grounded for someone her age. We were all rooting her on immensely.

Though Envita had warned me the treatment would be rough, I still had no idea what I was in for. Everyday the massive amounts of Vitamin C would have me puking into the trashcan beside me. I had already lost fifty pounds from Lyme, so it was disconcerting to lose even more. Envita also treated cancer patients naturally, and I was surprised to see that many of the Lyme patients had worse reactions then some of the cancer patients. I asked one of our nurses how could this be? She replied, "We essentially give chemo for Lyme patients." I wished they would've told me that from the beginning, I thought to myself. While I really enjoyed the nursing staff, it also worried me that they were all relatively inexperienced. The head nurse on their staff had been a nurse for merely a year. The other nurse administering my medications was a twenty year old medical assistant. They were nice, and attentive, but we were all concerned with whether or not they were even in a position to administer the types of medications we received. One of the male nurses one day didn't hook me up correctly to receive my blood after ozone therapy and my blood was splattered all across the room. It looked like a murder scene.

As the weeks wore on I continued to deteriorate along with the other patients, especially the young girl. They were hammering away at her with IV's despite the fact she was obviously too frail to take it on. She even needed a blood transfusion at one point and it tore my heart apart to see what they were putting her through. Many of us were hitting walls in our treatments and would go to Dr. Korn with our concerns. However, we rarely ever received any answers. He merely said, "I don't know, what medication would you like to be on?" I was furious he was expecting me to run my medical care. He was supposed to direct our treatments, that's what doctors do. It also concerned me that we were all on essentially the same treatment. The sales staff at Envita had made a point to discuss how our treatment was catered to each of our individual needs. But it was pretty obvious they had all put us in the same box and given us the same treatment protocol. It varied a bit from person to person, but for the most part it really was the same which was upsetting since all of are conditions were unique from one another. I even asked Dr. Korn at one point if we should run tests to figure out the different co-infections I had, and he said it didn't matter. On my way out of the office one day I caught up with the assistant manager Brian. I once again asked what their success rates were and Brian said, "99%!"
He said that pretty much every patient felt significantly better after treatment. I was becoming very skeptical at this point.

After eight weeks I still sat in my recliner receiving IV's with a gaunt face, gray skin, and the physical stature of a skeleton. I overheard a couple patients comment that I looked like I was dying while they though I was asleep. Many of the other patients I had originally came in with were not well also. I confronted Dr. Korn on the matter and he said our group was very unusual as usually most patients feel great when they leave. We had no other choice but to extend my treatment another month. This extra month would cost another $20,000. The expense for three months of lyme treatment with Envita had risen all the way to $65,000. However, I was lucky. For whatever reason, those next few weeks were key. I finally saw my energy return, weight started ascending back up, my mind became much more clear. It was the first time I had seen improvement with my condition and I was ecstatic.

It saddened me to see everyone else doing so poorly still, but I was so grateful for my improvement. I suddenly found myself doing one hundred push ups a day, while reconnecting with friends I hadn't seen since I fell ill. I felt like my life was finally regaining some normalcy. I was still far from perfect though, as I never had any symptoms disappear, they were simply reduced. My abdominal pain had also not gotten any better, but Dr. Korn would continually prescribe me one hundred percocet without me even asking to combat my pain.

When the month was up I bid farewell to the facility and staff and promised the other patients who remained ill that it would improve as long as they kept their heads up and stuck with their protocol. I also thanked Rich, and said they could count on my testimony if they wanted to. I regretted saying that at the time though because there were still aspects of the facility that left me very upset. The young girl was still doing horribly. The facility even tried to kick her out though she now couldn't walk because they couldn't pay all the medical bills on time. Envita was clearly not working for her but they told her to continue treatment and her family poured every dollar they had into her treatment, though they were risking losing everything with such a large financial sacrifice. Before I left one of the patient care coordinators Amanda came in and went right up to her and said, "I know how much you've improved, so heres a form so you can fill out a testimonial of your positive experience with us."
Amanda has always struck me as extremely cold, but this left me absolutely speechless. All the patients had come to a consensus agreement that she didn't care about any of us, it appeared as if she had sales goals she had to meet and was hell bent on achieving them regardless of who she knocked down along the way. Jessica couldn't even lift her head up and she was trying to work a positive testimony out of her, it was selfishness personified.

On my last visit with Dr. Korn for my treatment, we discussed my aftercare protocol. I was supposed to use a rife machine every day though he sternly said to never tell anyone that he told me to purchase one. He also wanted me to take fifteen salt pills a day and that would put me in full remission eventually. I asked him how did he know these treatments were so successful? He simply replied that patients never called back with their concerns which meant they were well. Now I was overcome with anxiety and fear, but I was feeling better so I still entrusted him for some bizarre reason.

I was excited to return to my life, but that excitement was quickly swept away with the cold reality that had shook me into an emotional coma. I was becoming sick again, immediately. Within only a few weeks after treatment I was already seeing my symptoms greatly increase in their intensity. The fatigue had returned and I found myself bed-ridden once again. I did the after-care protocol as they suggested but I was continually feeling worse. I would schedule an appointment with Dr. Korn once a month pleading for help. I asked if I was over-doing it on the rife machine, but he said the more that I did it the faster I would get better. Every time I asked why this was happening he would simply use his favorite candid reply, "I don't know."

After three months my condition had declined to the point where I was worse then when I had begun treatment with Envita. I couldn't walk more than a few steps, couldn't eat, couldn't watch TV or read. I would simply sit in my room turning my light on and off. The light sensitivity was so bad that it would cause me pain and I would continually have to turn the light off to give my eyes a break. I had absolutely no idea how I could go downhill so quickly. I scheduled another appointment with Dr. Korn and this time I wouldn't walk out without concrete answers.

I walked into his office with the aid of my family. I sat down and explained to him that I couldn't continue at the pace I was going. We would have to conjure up a new strategy or my condition would continue to worsen. He said that he was simply perplexed with my condition and had absolutely no idea what to do. I told him that wasn't good enough and he needed to come up with some type of solution. The words that would then come out of his mouth were something I never thought a medical professional would ever say. It would leave me paralyzed physically and emotionally.

"You were in Africa for a while, correct?" he asked.
"Yes, but I don't understand how that applies at this point."
"In Africa there really are witches, they are real and they really do cast spells upon people. I believe that they may have cast a spell upon you while you were over there that has prohibited you from getting better."
Our entire family just started blankly at him, with absolute shock.
He continued, "The only way we can solve your case is if you go to a pastor that I know. He exercises people, and is great. He will surely get the demons out of you."
"Wait, what,?" I still sat there not able to fully process the gravity of everything he just said, "I'm jewish Dr. Korn, this.. this.. this wouldn't help."
"I'm jewish too, but Jesus is real and he is here to help as long as you allow it. If you allow Jesus to enter your life, you'll find an easier path to wellness."


At this point I couldn't make sense of what was happening to me. I was too fatigued to walk ten steps when I walked into his office but now I felt my fists clenching. My stomach was burning, rage coursed throughout my body.  I couldn't believe it, but I was ready to lunge at this man and hurt him. I had entrusted my life to him these past six months, and had literally taken my health and rode it into the ground. Even with all the rage and every impulse in my body told me to hurt him, I was frozen by what he had said. I couldn't make sense of it all. Eventually we thanked him and walked out of his office. The car ride home was silent, we didn't know where to turn.

I figured if Dr. Korn's solution was to offer me an exorcism then I had probable cause to ask for a refund on my treatments. I called the facility and wanted to schedule a meeting with the owner of the facility Dr. Dino Prado. He agreed as he thought my sole purpose was to come in and help them improve their treatment protocols. When I walked in, one of the mangers Craig sat in, and a new lyme doctor they had just hired to work alongside Dr. Korn was in the room as well. Craig was one of the only employees I truly had an infinity for. I knew he genuinely cared for his patients and had the right intentions. His little sister was really sick with Lyme a couple years ago and Envita had put her into remission. After that he quit his job and began to work for Envita because he wanted to give to others what they had given to his sister, I knew his heart was in the right place. But, one day I caught him speaking a bit too bluntly during a conversation we had. I asked about the success rates they gave, and how I'm not sure how accurate they were. He really hesitated, even remarking how there's much he wish he could tell me but he really couldn't. After thinking it over, he relented and told me how sometimes they essentially have to warp the truth to fit a narrative to get people to commit themselves to doing their protocol. If they didn't patients may not agree to do Envita, and all they was doing were helping people so it was in their best interest to pursue treatment with them. Craig was very nice but it seemed to me that he implied twisting the truth was ok because it allowed them to cure people who wouldn't otherwise get healthy. However, he clearly wasn't aware of the damage this facility had been inflicting upon a number of lives.

The meeting with the four of us had started out rather well. Dino had apologized for Dr. Korn's actions but maintained that spirituality was an important component to wellness. I acknowledged his statement but replied that though I appreciated the sentiment, if I needed spirituality help I would go to my local rabbi and not my physician. He let out a small chuckle and agreed. They then dove in asking me questions about how the patients experience could improve. I offered constructive criticism and they received it very well. I said that they couldn't simply stop checking up on patients once they left, that it was irresponsible and they were much more likely to relapse. He agreed and said they were working on it.

I was nervous and wasn't quite sure how to transition to my real purpose for the visit so finally I just put it out there that I felt with how poorly my case had been managed that I deserved a full refund. The expression on Dino's face quickly took a 180 degree turn and he looked as if he had seen someone just get shot. Craig was also taken back and was scrambling to make sense out of everything. Dino became very defensive and rattled off to me how I was being dishonest about seeking a refund, and he didn't respect dishonesty. My brain nearly exploded as I wanted to lash out about how all his staff had done was lie to me with fake statistics. Eventually I did comment about the success rates his staff had given me and Dino admitted that they were incorrect and there wasn't any evidence to back those claims up. However he was still speaking to me in a very bitter tone. He was clearly upset as he explained this wasn't a BMW dealership and he simply couldn't return medical treatment.

He wouldn't let me get much of a word in as he continued on a diatribe about how skilled of a doctor he was. He said that if I pursued treatment anywhere else I wouldn't get well. He explained to me how he could only do all these amazing treatments in Arizona and that they were banned in every other state. He propped himself up by remarking how doctors come to him for advice, not the other way around. I found it odd that he felt a need to continually validate his own abilities, he even struck me as very narcissistic. I relayed to him that if his treatments were so great then his patients wouldn't have done so poorly. Dina remarked that we had a tough group of patients. I eschewed that notion by pointing out the group I came in had two patients see significant improvement, but the second group that came in didn't have a single person get well. It clearly wasn't just my group as the group after us had worse success. Out of the fifteen patients I was in contact with, only two got better.

Dino continued to react defensively. Him and Craig were saying that because of HIPPA they couldn't divulge too many details, but the reason patients weren't getting better was due to their inability to follow protocols correctly. I rejected that notion as I had done everything perfectly and then Dino thought to himself for a second.
"Are you taking any narcotics?"
"Well yeah, I take a couple percocet a day due to my high pain levels."
"There it is! Thats your problem. You'll never be able to get well from Lyme while taking narcotic pain killers, those are only meant for cancer patients!"
I was livid at this point, "But your doctor had given me one hundred percocets without me even asking. He never even told me that it would hinder my ability to recover."
"Well Dr. Korn shouldn't have done that and I'm sorry. But thats the reason you're not getting well. We can offer you three months of free treatment to get you back on track."

It was clear that putting the emphasis on narcotics allowed them to escape blame and put the onus on me just like they had done with every other patient. It was clearly never their fault, and by offering three free months of treatment they were espousing their christian morals and the higher calling they all believed in for themselves. I said I would think about it and thanked them for the meeting.

The next day I actually met with the other Lyme doctor at Envita to see what he could offer. He was a nice man but it became rather clear he knew little about the disease and we spent the hour talking about how marijuana could be beneficial for some of my symptoms. I once again thanked him and vowed that I was done with Envita.

The one good thing that came out of Envita was meeting a very nice couple who would take me in and get my treatment on the right track. The wife had Lyme for years, while the husband was very knowledgable and very involved in the Lyme community. They detested Envita after what the wife had gone through and set me up with a doctor in Virginia while also providing me with housing for free. I improved initially with the doctor in Virginia but had to eventually move onto a doctor in New York who really put the wheels in place for me to treat correctly. Both doctors were vastly superior in their knowledge and ability to treat this illness correctly when compared to Dino Prado's Envita.

Though Dino had remarked that doctors come to him for advice, I am of the belief that that is a clear lie. ILADS has refused to even align themselves with Envita, which is concerning considering how they would align their organization with any doctor they felt contributed to Lyme disease treatment in a positive manner. Also while I was there the doctors had missed the fact that I was Type 1 Diabetic even though my blood sugar was routinely high on the blood tests. I would go undiagnosed for another year due to what they missed. Dr. Korn also never figured out that the majority of my relentless abdominal pain was due to my gallbladder no longer functioning. I later had it removed and much of the pain went away and has not returned. I also was put on a variety of medications that I didn't need to be on. I later came up CDC positive for babesisos and it seems my condition is centered around co-infections and not Lyme Disease, making the IV antibiotics completely unnecessary at the stage I was at with my illness. There was also a number of modalities they overcharged for like $110 for a ten minute lymph drainage.

Envita will see some success with patients, but nowhere near to the degree they think. Though they consistently remark about their 90% success rates, its quite clear from the data I've been able to gather that it's somewhere around the 15-20% mark. The top LLMD's will usually see recorded success rates between 60-80%. My current LLMD is fantastic and over the course of an entire year of treatment has cost me in the neighborhood of $4000-$6000. Three months of treatment at Envita, who have vastly inferior rates of success with Lyme patients was once again $65,000. It's heartbreaking to see patients not get well from Envita and no longer have the financial means to proceed with any other treatments. They just stay sick, largely due to the cost and ineffective treatments given at Envita.

I must make it clear that Envita aren't the only ones out there pulling this type of stunt. Many have an unfounded belief in their ability to treat this illness, and couple that with a desire to turn huge profits off of sick patients can turn them into monsters just as bad as the illness itself. These are parasites within the medical community that have to be eliminated. They are big part of why this illness has lost credibility within mainstream medicine. As long as doctors continue to pull ridiculous stunts like this, they give the real doctors who truly care about their patients less legitimacy. If we dont do our best to identify those who have abused their powers, they will continue to drag down the perception of Lyme to the point where real progress can never be made.



Sunday, February 1, 2015

When Family and Friends Don't Believe You

I've always said that dealing with Lyme Disease physically is only half the battle with this illness, the other half derives from dealing with society's perception about your disease. But for many, society's perception also entails dealing with their own family and friend's perceptions with Lyme. I had written a piece a little while back that was directed towards loved ones of those afflicted with this wretched illness to help them empathize and understand your daily struggle. However, for many, there will be a few people within your life who refuse to educate themselves on Lyme, leading them to becoming indifferent to your illness or even sometimes downright hostile. There will be a few Lyme patients out there who will receive all the support they could ever want from those around them, but that tends to be the exception and not the rule. Learning to emotionally cope and eventually ignore the hurtful noise surrounding you is an essential and necessary part of your recovery. Luckily from my own experiences and others, there are a couple strategies that may help you cope.



First off, if your family or friends have mocked you or made you feel like your illness is insignificant you are not alone. Sometimes it actually helps to take solace in the fact that the misunderstanding you're experiencing from loved ones is not an isolated incident within the Lyme Community. I myself had fortunately experienced great support from friends when explaining my illness to them. They all seemed to be genuinely interested in learning about my condition and why I suddenly became bed-ridden. It also helped that my illness was visual, as the dramatic weight loss I experienced clued everyone in that I was not well. However, I'll be honest in saying I didn't initially experience the support I was hoping for within my own family. 

I'm an only child and have lost contact with any extended family outside of my parents. My parents knew I was ill at first, and went to great lengths to try and find answers to my condition. It took six months of being extremely ill before I was diagnosed with Lyme Disease. Upon the diagnosis my mother related my case to a friend who's husband had Lyme and how he fully recovered from Lyme within six months. She seemed certain I was destined for the same recovery, and my dad went with her assessment as well. I was extremely ill though, and could do nothing but stay on my computer throughout the days. I would constantly research my illness to learn as much as I could in the hopes of gaining an advantage towards my recovery. My parents didn't necessarily agree with my approach and at time would mock me and constantly make fun of the time I put into researching. 

It was hurtful, but what had hurt even more was hearing my mother on the phone with her friends comment about how I had no life now as if it were somehow my fault. Not getting better within the first three months didn't help my case of seeking emotional support. My father had made a comment that he no longer believed I had Lyme Disease and had even entertained the idea from a friend at one point that my condition was due to a mental illness. We sought out a second opinion at the Mayo Clinic together as a family. When the initial results for cancer after a myriad of tests came back negative, I confessed that I felt the Mayo Clinic would have no answers due to the fact I had Lyme Disease. He scoffed at that notion and then berated me for being so negative. Eventually I was right and Mayo sent me home with the CFS diagnosis we're all so used to.


Are my parents evil, maniacal people? No, they're not in the least bit. Were they stubborn, difficult and even a bit unsympathetic at times? Yes, without a doubt. The awareness behind Lyme Disease is in its infancy stage, and due to the limited understanding about our illness it takes extra effort on your loved ones part to learn about what we're dealing with. The fact that Lyme awareness is so low can be used as a scapegoat for family members who are afraid to accept the enormity and seriousness of your disease, as I expect was the case with my family. However, after a year they finally did come around when it could no longer be ignored. They weren't bad people who didn't care about their son, but since no parent wants their child to be very ill it became easy for them to hide under the cloak that society had put out that Lyme wasn't serious.

Unfortunately, not everyone's family will even handle it in the fashion that my parents did. My girlfriend deals with this illness as well, and though her parents have always remained supportive, the same can not be said for some of her friends and certainly not for most of her extended family. Some of her aunts' refused to even accept the notion that she was sick. When she would post pictures of us on the rare days she felt well enough to go out to dinner her aunts' would mock her and discuss how she was going clubbing and being promiscuous. This was hurtful, especially due to the fact she had a hard time getting out of bed, let alone finding the energy to somehow go clubbing. She would constantly try to explain to them what she was dealing with, but it often went in one ear and out the other. They treated her essentially as if this disease was a hoax, and would say disparaging things about her that no family member should ever hear. When one of her cousins was diagnosed with Irritable Bowel Syndrome the family rushed in to aid her cousin and acknowledged and empathized with how sick he was. But she's never received even a fraction of that empathy throughout the duration of her struggles with Lyme Disease.

It can be lonely and disheartening when you're going through relative hell and those people you cherish don't take you seriously. However, we've both found strategies to cope and though its not perfect, there are ways to better your outlook on the disconnect you may experience with those you love, and sometimes there are strategies to even help them understand more (though that's certainly not true for everyone). 

First off, as difficult as it may seem, over time you will have to learn to purely block and ignore the negativity that surrounds you. It won't come overnight, but it will happen if you continue to work at it. More than anything else you must accept the fact that you're seriously ill and the struggle you endure every day is very much real. Though it would be great to have the support from those you love, it may not come and that will be ok. You know how serious your situation is and that's what matters.

Second, make sure to utilize the Lyme Support Groups that are out there. This sounds easier than it actually is and I'll explain why. Lyme support groups, especially those that are online, can be very negative places sometimes. Those that hang out on those groups often tend to be the ones that have remained ill for awhile and could have a very negative outlook on their situation. Though they may need help and support, it's also important that you are in a good place as well. Sometimes, that means excluding yourself from as much negativity as possible. My personal suggestion would be to find just a couple of other Lyme patients through these groups who you can relate to and keep in touch with, who tend to have a positive outlook on their illness. No, everyone isn't always going to be filled with positivity every day, but it's important that they're not actually going to try to weigh you down. Online groups can be good for this, but try to find someone who is also within your zip code so you potentially have a person you could even meet up with at times so you have someone who understands you. Sometimes, in person support groups can be better for this, so try to find one near you. 

Third, I feel its important not to over-saturate social media with negative comments about your daily life and your illness. Yes, it's good to be open and honest with your friends about what you're experiencing but you can certainly overdue it to the point where they question the legitimacy of Lyme. These words sound harsh, but I have seen it happen. Though the conspiracy theories about this illness and how it originated may be true, it won't benefit you very much by continually voicing these things in a public setting. Do your best to convey your thoughts and feelings, but in a very calm manner. If they tend to not fully take to what you're explaining don't chastise them for not being understanding. You will likely have to just let it go, and maybe they'll be ready to take in what you have to say at a later time, but arguing with them about it will only turn them off from ever trying to learn.

Lastly I believe it's vital the you seek out therapy while you're on your path to recovery. Journeying through the road to wellness with Lyme Disease is one that will take you through an emotional whirlwind. Those close to you will often be unable to fully cope with what you're experiencing physically and mentally. I'd advise doing your best to seek out a therapist who is familiar with Lyme, or at the very least someone who is familiar with illness. My therapist didn't know much about Lyme Disease but did have a husband who had battled through stage 4 cancer. She actually became my number one support system, and I can honestly say I would not be here today without her guidance. Every week I would walk in with what felt like multiple boulders on my back, only to have them slide off of me by the time our sessions were done. You need someone who you can just vent to and get out the array of emotions this illness will take you through.



The message is that though it's hurtful to have friends and family neglect your circumstance, there's some positives that will come from this. You will forever know the true colors of those in your circle. This is the perfect time to see people for who they really are, and when you overcome Lyme Disease you will be better off without those people in your life. All you need in this recovery is your own confidence and positive outlook, along with just one person who you can talk to. Once you find that one person you can come to, then you're on your way to wellness.