I'm now entering my 3rd year of antibiotic therapy. I'm entering my 18th year of illness with Chronic Lyme Disease. I'm age 26, and I'm male.

My therapy has been nearly continuous since my diagnosis date of February 16th of 02. I have alternated for 2 1/2 years on Tetracycline 750mgs bi-daily and Plaquenil 200mg and Biaxen 500mgs bi-daily and sometimes tri-daily for a total of 1,000 to 1,500mgs.

Each cycle lasted an average of 6 to 8 months. I've experienced a severe worsening of symptoms with each cycle usually, but have not seen any consistent relief. Occasionally I've seen brief periods where my health would improve from about 2 1/2 to 3 to about 4 on a 1 to 10 scale [10 being symptom free and healthy]. Days where I struck 4 were quite amazing, and I would be able to leave my house and clean myself at will. These days are rare. Each year I've seen a total of maybe 2 weeks where I reached a 4. In 3 years I've seen a total of 6 weeks and I've taken full advantage of them. Most of my sick time is spent around 3, or 2, especially during the worsening of symptoms when new cycles began.

I've begun IV Vancomycin in mid-December of 03 after being hospitalized in November of 03 for weight loss, and other usual symptoms associated with Herxheimer reaction. It's very hard to survive through those Herxheimer reactions when the torture is ongoing and unending for months at a time.

I'm experiencing one of the worst periods now since I've never used IV antibiotics before. My dose is 1,250 over a 1 hour period each day. The symptoms are traditional: Exhaustion, Nausea/Bowel Disease, Abnormal Cognitive Disorders with thinking, memory, moods, emotion, and other nervous system disorder such as light and sound abnormalities, tactile problems, cold hands, and feet, night sweats, insomnia, and blood sugar and blood pressure abnormalities. The list of symptoms is ongoing and far more extensive than this - but again you all walk this walk so you understand.

The worst symptoms are the depression, and feelings of being hopeless or worthless. It's the chronic eroding effects the illness has on the spirit, the...will to survive; that is the most devastating part for me. I have a strong spirit and I'm willing myself to live - I'm just having an awful time with my faith and my ability to continue on under this burden. Even the strongest of us grow weak and listless beneath the strain of Lyme as well as it's other associated co-infections. Before anymore cracks form in my foundation I'd like to reinforce myself with further support.

Cliff Notes: I have so many goals. I need to defeat this Chronic Lyme Disease. Who is with me in feeling this way? I've made promises to those I love that I wouldn't check out or give up. I'll do whatever it takes to survive this, but damn it is really hard, especially while on this IV antibiotics! Does anyone have any inspiration, strength, hope, or experience they could share that might help fill me up and get me thru this difficult time?

I began treatment just this weekend, and I msut admit I am terrified of what this process is going to take away from me. I have chosen to follow a protocol that does not include abx at this time, but if I do not improve in time, I will include them.

While I still have so much fear, and I have so much resentment for this disease for robbing so many years, I still have hope. I feel so lucky that I have a disease that is treatable. I know it isn't going to be easy, but I have the chance, the opportunity, to get better.

I will stop being a disease, and I will be start being Erin again.

Initially, when I heard how difficult the treatment process was going to be, I was considering not pursuing treatment at all. I currently am able to work, and I know that won't last long.

But I realized that if I had leukemia, or if I had breast cancer, the treatment would be just as difficult, and would make me just as sick, and I certainly wouldn't turn it away.

I am entirely disabled by the condition. There was a time when I was not but as the condition progressed I became entirely crippled mentally and physically. During my early teen years - even while infected - I was a runner and a bodybuilder. I had so many goals and so much internal strength. Today: I am unable to work and I do not leave my house unless I absolutely have no choice. The condition has eroded my energy levels significantly to a debilitating point.

The cognitive abnormalities show up on the Brain SPECT scans, and other psychological testing that I've had. I've been retested post-diagnosis in order to further support my case for Social Security and Medicare/Medicaid. I was approved last year and have gotten the support I needed from the government. That was a very positive moment for me.

I fought Unum - my disability carrier from my employer for nearly 2 years. They cut my benefits entirely and there was a period where I had no income and no capacity to pay for medications. I hired a lawyer but it was such an incredibly large uphill battle that I didn't have the strength to fight Unum. They cancelled my benefits claiming I wasn't "disabled." Then they hired people to investigate my life and collected enough information to suggest I was either malingering or psychologically disturbed and thus exempt from their contract. That was a very disturbing and sad time for me. Bills weren't being paid, Utilities were turned off - and there I laid in my bed entirely incapable of fighting the system which was destroying me.

In the 18 years I've been sick I've seen hundreds of doctors, and I'm not exaggerating. I've heard every excuse under the sun as to why I needed to see a psychiatrist, rather than be looking for a tangible physical cause to my illness. I'm sure many here have walked the same road. I have been misdiagnosed with around 12 different conditions, while many other collections of symptoms have gone untreated and undocumented by my specialists up until I became more aware of how I could better approach the system and learn it's inner workings. Obviously with cognitive defects it's much harder to learn and remember things - but over the course of about 5 years I had learned enough about medicine and research in order to attempt to find a solution. That research is what eventually - after years of studying all the wrong diseases - led to the cross referencing of other diseases that could cause all the other diseases. It was difficult because I had to look for an independent single condition, or collection of single causes [like co-infections from a single source in a Tick] before I could figure out what was going on, and I had to also take into account that it may be a disease which is undiscovered or that has been discovered but has poor testing methods.

Talk about a big mess. Where does one begin when you're infected as a child and everyone around you tells you that you're insane, or that you're malingering, or...even worse - deny the reality you're living! I spent many years believing I was simply a defect, a stigma that society could do without! Clearly as I learned more I eventually realized that wasn't true.

Today: My specialist is Dr. Sam Donta. He is an infectious disease specialist and as far as I'm aware of he only handles Lyme Disease and other Co-infections associated with tick spread illness. Most of you probably know of him or have read work done by him. He's from Boston University Medical Center. I've asked him about co-infections two years ago and he told me the therapy we're using would target those too based on the location of where I was bitten. I was bitten in Westerly Rhode Island at age nine. Dr. Donta told me that testing in my case wasn't a worthwhile pursuit given the poor accuracy and the duration of my infection. I trust him fully, and each month he's monitored my case closely.

I'm asked constantly by my Home care nurse and my doctors - including Donta whether yeast or thrush have been noticed. I've not seen any problems yet, but I will probably have a stool sample taken soon. My digestive system, as well as every other part of my body is just inflamed and aches horribly. I've also been diagnosed with Crohn's Disease, and I even developed a fistula down inside my rectum. I suspect these are all directly connected to the Lyme Disease because whenever the symptoms from the Lyme improve so do my cognitive, bowel, joints, and basically every single every part of my body.

But I digress: I've had a few stool samples taken over the course of therapy and nothing abnormal has shown up. I'm having a colonoscopy done in February and the specialist doing that is working in conjunction with my other doctor. My doctors have been working well together because of the way I keep records and approach each of them.

They all want me to get well, and they're doing everything they can. I learned holistic medicine about 4 years ago, and also have a specialist who does that - but Dr. Donta told me that I was not to use any supplements while on therapy. I trust his judgment and so I haven't used anything unless I've asked for his permission and provided him the list of all ingredients.

His response when we talked about supplements was that in his professional opinion the only way I could overcome a persistent infection like I have is with long term antibiotic therapy. He said there are things that may help comfort me, but nothing that he knew of based on his clinical experience that would actually work. His view was that a lot of people try to take advantage of Lyme patients, and I absolutely agree. That isn't to say other therapies don't work or haven't worked for other members - but I exhausted thousands and thousands of dollars using the best therapies I could find - and I spent thousands seeing my holistic specialist, and neither worked to my knowledge. That isn't to say it wouldn't have worked had we had full knowledge of Lyme Disease and the complexity surrounding it - but given my fiscal situation and my current therapy it's unnecessary to attempt to drive myself further into debt.

There was one therapy that showed very positive results and I believe definitely coincided with the treatment - and that was Transfer Factor Plus. However, I have no proof it was useful outside of my own perspective, nor would I buy more of it given the exceptionally high price. I simply don't have the money. If I had unlimited funds then yes I would use it.

Given what I know about Lyme today - stimulating the immune system to function more normally is important. I've grown so exhausted that I am unable to exercise or even eat most of the time.

I asked my specialist point blank "Can this be cured?" and he told me we could cure this, so I'm taking the blows and doing whatever it takes. He said it would take many years, but that's the cost he said when you've been infected as long as you have.

Anyway, hope that helps give some of you more insight into my case. The details are familiar to you all I'm sure.

Wishing you the best in your treatment.
Mike