New here just diagnosed

I have just started working with a LLMD who has diagnosed me based on clinical symptoms, but has also done blood work. I'll have the results next week. She explained they most likely will be negative, but to increase our chances of a positive test, she had me take Flagyl for 5 days, then on day 6 go for the blood work.

I had my first major Herx on days 4 and 5 and still on the first day off of the Flagyl. She said this is encouraging that we are on the right track. ugh

I suspect that I have had this for about 18 years. I used to be a dog groomer up in MA, and was always hiking in the woods. I didn't have health insurance and I remember getting a really bad flu, the fever was high, I remember thinking I was leaving my body. I never seemed right after that. I didn't go to the doctor because I figured I was healthy and would fight it on my own.

After that my neck started hurting, but I thought it was from dog grooming and how I held my scissors. I started carpal tunnel symptoms, I had an electrical buzz in my shoulder for a few years. I came down with what they called shingles twice in two years, they said it was from stress. The shingles were in the same area as the shoulder buzz. I remember driving down the street and forgetting where I was, I decided to just keep going and figure eventually I'd remember. Over the years I got used to a lot of the quirky symptoms, like the word switching that developed. Sometimes I did go to the doctors abut they just treated symptoms or said I had anxiety. The symptoms would cycle horribly and I could go from feeling OK to sick and back. I started having panic attacks.

A few years back I joined a charity team to walk a half marathon. I did it the first year with pain, then the second year the leg pain got intense, I couldn't walk briskly, I was in massive pain and each training would take days to recover from. Then I found my nutritionist. She took me off of gluten, she thought there were thyroid issues. With her help I not only finished the half marathon that year, I ran parts of it and had a good time for me. I thought I had beat what ever it was.

the next year, the pain came back again, training was horrible, I would be on the trails crying from the pain. I wouldn't quit because I didn't want to disappoint my coach or the team. I had a horrible race, walked the whole thing, was in pain and miserable. This year, it was so bad I had to quit half way through the season. I walked a shorter 5 mile course on race day, while my husband did a full marathon. Guess who took weeks to recover? Yup, he was getting me ice and pain killers.

I decided that I was going to figure out what was going on and went to a slew of doctors. I knew my CRP had been up around 8 for the last 3 years. I had testing for autoimmune conditions. The first time I went in, that doctor pretty much told me that he thought I was over weight and if I just lost weight all my problems would go away. He took blood work, I came back positive twice to scleroderma, but I have no symptoms of it. I didn't fit into his box. My new General practitioner did all kinds of blood work, declared me a medical mystery and told me to try a teaching hospital. He did a standard western blot, which was my first time thinking this could be Lyme. Of course it was negative.

On my own, I found that Serrapeptase greatly reduced the joint and muscle pain. I get some relief from my inversion table also.

Finally through a friend with Lyme, I found the LLMD. I have some hope that I will get better and I will beat this. I know after last weekend with the Flagyl, it won't be easy.

My nutritionist put me on a very strict diet. I think it's close to the Paleo diet and also uses food combining. She is trying to get my liver pathways clear and my gut healthy before I go back onto antibiotics. I don't eat any grains, sugar, alcohol. The only carbs I'm allowed are sweet potatoes, squash and black beans. I have to eat fruit raw and by itself. Never combine proteins and carbs.

Last weekend on the Flagyl was sooo bad, it does scare me. My LLMD told me she won't put me back on Flagyl for a while and it will be gentler moving forward. My head was in a deep fog and I felt like I couldn't find my words. I would say the wrong words and felt like I couldn't even control what I was trying to say. Thankfully, I have a wonderful patient husband who understands and is able to interpret what I meant. He doesn't make fun of me for it (which a lot of people do)

Ok so that's my not so short introduction. I have read your thread for new people. It's a lot of information and a bit overwhelming, but I'll re-read. It's nice to have a group like this around. I feel kind of isolated right now.

Thanks!

Thanks for the warm welcome!

Thanks for the book suggestion. I did plan to get some, but wasn't sure which to get.

I did too much this weekend and crashed again. Spent most of last night on the couch like a slug.
One of the most draining things lately is in trying to communicate with people. I used to be big into bantering and joking, but that just takes too much energy to keep up. I don't want to lose my perky self to all this..
It's so hard to find the balance on energy.

Ali

I do work full time, and am about to start a new job. So I'm really worried since my job requires the ability to think. They hired me for my brains and I feel like they're about to get a really bad deal here. I find I have smart days and really stupid days.

I also am taking online classes to get my degree which eats up a lot of time and energy. Next semester I'm dropping the class load to one class. I can't drop out of school as the student loans would then become due and I'd rather just keep hacking at it. I'm starting to learn that I have to plan my energy like a budget. I read the spoon story in the new members section and it made total sense.

I understand your fear of the antibiotics and the herx. My nutritionist got me to really go strict on my diet, plus added some supplements. One of them is a really strong Oil of Oregano, plus I'm doing Green Vibrance. Last night I took a bath in Epsom Salts and sea salts and today I swear I'm in a herx. I don't know if it's cleaning up my diet (which wasn't that bad before), the oil of oregano, the Green Vibrance. I just don't know, but I feel horrible today, not as bad as when I was on Flagyl, but still bad.

My nutritionist won't even let me have quinoa right now, but hopefully later we can bring it back in. I tend to eat too many carbs, so the strict restrictions may be good for me now.

4 - 6 miles a day seems like it could be a bit rough. Are you able to do it? I found I can manage 3 slow miles but if I go much over it takes me days to recover.

I wish you the very best in your recovery. I waited over two months for my LLMD, but I like her, she was worth the wait.