My story, advice is welcome! :)

Hey I just wanted to share my story with everyone, I am still astonished with what I have gone through this past year.

Just about a year ago I was a normal 21 year old college student who was traveling around the world at the time. When I was in Africa I began experiencing strange symptoms. I didn't think too much of it as I thought once I came back to the US the symptoms would subside.

However, when I came back they did not go away. No problem I thought to myself, Ill go to the doctors and they'll get me on the medicine I need.

But I never did receive the medication I needed, over the next few months no doctor could find whats wrong with me. At one point I begged for an antibiotic in case this was parasites. When I took the 3 day course of antibiotics I had a severe herx reaction. But every doctor jus blew it off as nothing.

When I went to a naturopath he suspected a candida overgrowth :/, since most of my symptoms were GI related. I once again had a severe herx reaction to the oregacillin he prescribed me.

6 months of being ill I finally went to a doctor who diagnosed me with Lyme Disease. She tested my CD 57 which was a whopping 16, and my IgenX was positive for a few bands. She put me on 300 mg of doxy a day and I rotated tinidazole every 3 weeks at 1000 mg/day.

She also prescribed me 30 other supplements and vitamins that I would take a day, sometimes I would wonder if I really needed all of this stuff as she was getting a lot of money out of me. 3 months went by and this time I didn't see a herx reaction. My blood tests were coming back better, my Cd 57 had gone up to a 40, but I wasn't feeling any better at all, and I really didn't believe I was having any reaction to her treatment. I started to question if I even had lyme and was just getting taken for a lot of money.

A friend who is an oncology nurse came over one day and couldn't believe how skinny I had gotten. I was built like a linebacker a year ago, but I have since lost 50 lbs of muscle mass. My ribs are protruding out of me, Im unrecognizable to most friends.

She suggested I go to Mayo immediately as they would figure out my issue. My Lyme doctor was not for the idea, she warned me that it was OK to get cancer crossed off, but that Mayo wouldn't find what was wrong with me and I would receive a CFS diagnosis. I paid no attention to her advice, as I thought she was just trying to get money out of me and didn't want me to potentially find the real reason for my suffering.

I went to Mayo and the doctors were very nice and seemed very intent on getting to the bottom of what was wrong. I went through every test imaginable, every one, and everything came back negative. This past week the consultative doctor at Mayo who has been ordering all my tests, came down on me with a chronic fatigue diagnosis!! He acknowledged that I was very sick, but they could not figure out why and that anti-depressants may help give me an energy boost.
I was infuriated, I told him so a magic fairy came down about a year ago and decided to give me IBS, CFS, POTS, and Hyperhidrosis all al the same time???

He very nicely responded by saying that Chronic Fatigue can do that. I felt badly for ever questioning my Lyme doc, she had it right all along. But her treatment wasn't working for me and now I am back at point A.

I am thinking about treating at Envita as I live in Arizona. I empathize with all of you. People kept telling me doctors dont recognize Lyme, but I didn't believe it until I saw it for myself. We really are left to rot away by conventional medicine. All I am is a young man who wants his health back, nothing more. I am not trying to pit myself in the middle of a large controversy in the medical community, but thats exactly where I stand today.

I was taking drops for the confections. A-Bart and A-Bab but I had zero reaction to either of those. And yes I was on doxy for all 3 months, while I rotated Tindamax which was meant to be my cyst buster. She had me doing IV nutrition therapy which I was OK, but then this other treatment once a week called Hydrotherapy. She said it was very important for treatment, but it was very costly and seemed very unnecessary. Ive read through posts about Marthas Vineyard treating at Envita and having success, but I was curious if anyone else has treated there as that is where I am leaning towards going next.

Thank you for the quick replies Summer, its very appreciated!

Yes Carrie I had reached eighteen drops on both of those without a reaction at all and my doctor had said that was the maximum amount I should do. Ive been off all protocols this past month since Ive been at Mayo.

Even though I wasn't seeing any improvements on my doctors previous lyme protocol since I have stopped taking all these pills this past month I have deteoriated incredibly fast. So even though she wasn't treating me aggressively enough to beat it I do believe she was at least keeping me stable.

I need to start some type of treatment that works effectively soon. My body is shutting down on me incredibly fast, and I was someone who a year ago was in perfect health. We do believe the lyme had been dormant in my system for years and was activated because of all the stress I put on my body with my travels, but now that it is active it is progressing incredibly fast.

Thanks borderlyme, I think that my situation has become too severe for oral ABX to work effectively. Im hoping that IV ABX will provide the punch I need.

Obviously most of you can relate, but this is a terrifying time in my life. Ive lost all health and am wondering if I will ever gain it back. Im quickly running out of money to treat this thing, and I can barely get out of bed most of the day so working is not an option especially since I have yet to obtain my college degree. A hectic time right now to say the least.

I did meet with Dr F and I wasn't a fan tbh. Right off the bat he said I didn't have Lyme and that I more likely have the parasite FL 1953. The only problem with that, after looking into him further is that he will diagnose almost everyone he sees with this parasite regardless of their symptoms as he discovered it and he is the only one who treats it, oh and you have to pay $500 to get tested for it :/

Ive seen quite a few LLMD's and Dr Fry was the only one who told me that I didn't have lyme.

I'm sorry to hear you are having such a rough time as well :(

But I was originally seeing an LLND, but I do believe she wasn't treating me aggressively enough. Because she was a ND she was so concerned with me not herxing too hard, but I was so bad when I got into her office that there was no where for me to go but up I guess.

I do hear the main complaint behind Envita is the pricing, but the thing that is so appealing to me about them is they treat you almost as if you are a cancer patient. They load you up with IV ABX, blood ozone, hydrogen peroxide therapy, and chelation. Ive talked to people who say that on his protocol they all pass mountains of parasites which is exactly what I need ha.

What I need more than anything else I believe is to empty my body of everything. Almost click reboot on myself, and it seems like thats what Envita does.

Hi Lymelight,
I am so sorry that you are going through this. I'm in the same boat. I have been ill for 18 months. I think I've had a dormant infections for at least several years. Immune system changes during pregnancy triggered a Lyme flare. I was EVERYWHERE trying to figure out what was wrong and was getting sicker and sicker. I went to Cleveland Clinic's diagnostic program and the only diagnosis that they came up with was that I had Dysautonomia/POTS. I continued to search for answers, found a LLMD, and I started treatment 2 months ago. I have not seen improvement and have been worsening, but I think that it's all from herxing. I can understand going down hill fast and feeling like you're dying. From what I know now though, for those of us that have had Lyme for a long time, it takes about 6 months to 1 year to really see improvement on abx. I feel the same, like my body needs completely rebooted. I wish there was a way to just flush everything out and put new in LOL!

LymeLight-Hmmm. If that's true, sign me up for IV! I asked my LLMD about IV and he said that he prefers to start w/ oral and uses IV as a last resort, but if IV would help sooner, I want it now!

IV's are not a 100% cure for Lyme and there is no guarantee that they will work more quickly than orals. There's no guarantees in Lyme and co-infections at all. Someone that is promising you a specific level of improvement from specific meds in a timeline is being dishonest. Nobody has any way of knowing exactly what it will take to improve your specific situation.

You'll find that there are many people that use IV meds on and off for years just like oral antibiotics. I have spoken to many of the top Lyme doctors in the country. More than one, including a past president of ILADS have stated that IV's are not going to be a magic bullet. Rocephin only treats Lyme. It does not treat the numerous other complications that patients face. 90-95% of people get better without IV's according to a leading LLMD.

When IV's are stopped, relapses are very common. Most need to be on very strong oral combos after coming off IV's to prevent a complete regression, and sometimes even doing that doesn't work.

I don't know much about Envita or the doctors that run it, but based on the website, I agree with Razzle.

Also, you are aware of the costs involved with IV antibiotics right? Most likely it will not be covered by insurance for more than 28 days if you even get that. The cheapest way to go is through Infuserve and that is over $700 per month not including doctor's appointments, other meds, dressing changes, PICC insertion etc. Plus, I would make sure that Envita is not requiring that you purchase all the meds there. If that's the case you can expect to significantly increase the monthly cost from that of Infuserve.