New Victim

Hi, I am new to the wild world of tick borne disease. Like many, I bounced from doctor to doctor for the past year and got nowhere. I did waste time, money, and energy doing things like taking meds, chiropractic stuff, and so on. Funny thing is my mom told me about a tv show that she watched and the girl had many of the symptoms I complained of....I found someone to send bloodwork off to California and am positive with low CD 57. I am on antibiotics but do not get to my appointment with LLMD for about 1 more month.

I am feeling rough lately and symptoms seem to be worse. I guess I am concerned that maybe I have other stuff going on ... Maybe this is not just Lyme and co infections?

I have never known anyone who has had it... I have found that as far as talking with peoplei considered friends that seems to have pushed them away. They do not get it and have not bothered to research it.

From what I can gather this is not a quick recovery. Are we talking 6 months, a year? Will I feel better in a few months? I live on a small property and have cattle, dogs, and am struggling to get the bare necessities taken care of.

Hi BBRH!

I am newly diagnosed as well with a low CD-57. I just saw a LLMD for the first time 2 weeks ago. It was such a relief to finally find someone who was willing to help me as my symptoms have been getting really bad and increasing by the day for several months. I had never even considered getting tested for Lyme even though I have had tons of ticks attached over the years.

I find that my friends don't understand either. When I told them about my diagnosis and the types of treatment that might be needed, their first response was "Did you get a 2nd opinion?" As if I and three other doctors (one not even a LLMD) were making everything up! I couldn't possibly be that sick in their minds. They still think that Lyme is easy to treat and there is no reason why I shouldn't be cured by the standard 28 days of doxy. I don't talk to them about it anymore. They aren't interested. They probably think I'm a hypochondriac. Unfortunately, I think a lot of people have a similar attitude until they themselves or someone in their immediate family are infected.

This board is great because everyone is not only supportive, but they are also really knowledgeable if you have any questions about pretty much anything Lyme-related.

As far as something else going on besides Lyme, I see that you went to a lot of doctors before going to the LLMD? Did they test for other things? When I first started feeling badly, I went to general family doctors, rheumatologists, etc. and they couldn't find anything. It was frustrating because I knew that something was seriously wrong but nobody was interested in helping me. I was someone who NEVER went to doctors unless there was something serious going on.

The positive thing about seeing the family doctors was that they ruled out pretty much every other serious medical condition. With each "normal" test result, it became more likely that Lyme (which they would not test me for by Western Blot) was the cause.

I haven't been able to find any definitive prognosis for recovery. I think it's different for each person. I'm hoping my treatment won't last years, but I don't know that there is much I can do about the length of treatment other than follow the advice of the doctor and the research that I do on my own, eat a healthy diet and try to reduce stress. My LLMD told me that some people get better quickly and for others it is a long-term open ended treatment plan.

Post Edited (Summer3) : 1/9/2012 7:34:03 PM (GMT-7)

Hi BBRH - welcome to the forum! I'm sorry you've been feeling so sick, but I'm glad to hear you're finally seeing an LLMD and getting the answers that you need!

It's pretty common to get worse when starting antibiotics, like Scarlet Grace said. When the bacteria die we're left with toxins that overburden our bodies and cause a variety of symptoms. If you take a look at the "New to Lyme?" thread, there's some information about the herxheimer reaction, and also some ideas for detoxing, which most of us here consider to be pretty important when it comes to Lyme - or just living in an increasingly toxic environment!

Unfortunately I can relate to not getting positive responses from talking to friends about my illness - even the supportive ones who really try to understand just can't quite get it. The emotional toll of having an invisible illness like this can be just as bad as the physical symptoms we experience - but we're here to offer all the support you need; we all understand what you're going through! Being sick is pretty stressful - it's tough not to have that short fuse sometimes! Just remember that as you recover, you'll feel better both physically and emotionally - you'll get through this rough patch!

May I ask how long (roughly) you've been sick? And what antibiotics you're currently taking?

I'm no expert but it sounds like what you're taking should be helping a lot - which unfortunately may make you feel a bit worse for a while. Are you taking probiotics? If not, the antibiotics may be killing off too many of the good bacteria which could attribute to a worsening of symptoms.

If it helps any, I've had a lot of anxiety since my Lyme symptoms worsened - anxiety in general and anxiety over my symptoms, and with time and just getting accustomed to this whole situation, that's eased up tremendously! It's definitely a tough adjustment - but I'm glad you found us!

Hi BBRH,

Sounds like your meds are doing their job, though I'm sure it doesn't feel like it right now.

One of the things that can help you feel better is to detox. The instructions are in our "New to Lyme?" thread. Some of it seems a little silly, to be perfectly blunt, but it does work to get your energy level back and relieve some symptoms.

Also, my doc said that it is important to take a good Vitamin B complex supplement when you are on Flagyl/Metrodinazole. That also will help with your energy and mood.

I also have a small piece of land and livestock. While I was very ill, I did just the bare necessities to keep every one well and happy. Now I am finally getting back to getting the place in better shape and doing all the things that just make it nice. You'll get there too.

When you go to your LLMD you will be evaluated for co-infections. That will make a difference in how long your recuperation is.

Glad you found us!

I can so relate to the feeling of restlessness! I get so excited just to run errands these days - I've run out of TV reruns! On the bright side I think I'd do very well on a TV trivia game show after all this time!

It gets tough for me to think of ways to entertain myself - but whenever I take on a project, I feel so much better, at least for the time being. Like last week I made a scrapbook for my nephew's first birthday - it felt so nice to be productive and in that sort of "flow" experience. For a while I tried learning a new language, although I've put that one on pause for a while because of a new symptom - dyslexia - which makes English tough enough as it is!
Anything you can find to do to stimulate and challenge yourself a little bit will really help with that feeling of restlessness - even if it's something silly or relatively pointless. When I get really bummed about the fact that I'm home alone so much, I try to think of this as being given the gift of time, you know? All I hear people complaining about anymore is that there's not enough time for x, y, z. I try to do all those things that I didn't have time to do when I was working and living my "normal" life.

That's exactly how I've gotten through the last 12 years, BBRH! Be careful to not push yourself too hard - your body needs to rest more now.

I even had to sell off my livestock because I couldn't take care of them, although just this past summer - after finding & starting the right treatment for me- hubby & I started back up again! I only have a few dairy goats, and won't get as many goats or other livestock as we once had, as things have changed now.

Hang in there - things will get better as you get further into your treatment.