Lyme Disease Support Group

The rash went away and not long after I started to get join pain in my knee, same leg as the rash. Went back to the doctor and told me to calm down and gave me pain pills. The Symptoms kept coming:

Joint Pain, Muscle Cramps (my muscles become so tight, sometimes my hand is even hard to open and resembles carpel tunnel), headache, nausea, Constipation to loose stool, abdominal pain, random chills, sore throat, chest pain, neck pain/stiffness, and easily lose focus and forget things I just learned. Probably more I cant think of right now. It just keeps becoming worse.

It finaly took my OBGYN to tell me something is wrong and sent me to another doctor to be tested for Lyme Disease. My test has been sent in and I get my results on Thursday. I had given up, I just accepted I was crazy because everyone was telling me I was. My doctors, my bf, and even my brother. I wasn't depressed at first but the pain and thinking it was all in my head...I became depressed.

The doctor said it sounds like I have Lyme and even if the test comes back negative will start me on Antibiotics.

Have a few questions: I had the rash about 2 months ago, would symptoms like these appear so so fast? and did I catch it early enough so I wont have any long term effects afterwords?

Advice: Don't give up, you know when something is wrong.

Post edited by: Ninjai, at: 02/01/2009 23:47

Welcome to the forum. It's hard to answer your questions. You sound like someone who has been through the wringer. Despite your thought that you caught it early, you really have not. Unfortunately, these bugs multiply fast and encyst rapidly, so they can wreak havoc with your body very quickly. Good thinking on your doctor's part in getting you on ab's, AND in saying screw the test results! For a number of reasons, you may test negative but still have LD... So, it's great that you have a doctor who is really thinking outside the box. Too many of them just don't, and that's why many of us on this side have suffered for decades with no treatment!

Kudos to you for not giving up, and persisting despite crappy treatment by doctors. Now, your antidepressants may help you, because we DO get depressed, even the best of us. Being in constant pain sucks, and we can let it get to us! Now, you are realizing that I see, huh? Poor hun.

Symptoms can appear this quickly. Contrary to popular belief, many biting insects besides ticks carry LD, so there is no telling what bit you and what passed it on. You sound like a Lymie. After a while, we get the opinion that you walk like a Lymie, look like a Lymie... well, you probably are! You CAN and WILL get better. You ALWAYS have to believe that, if you believe nothing else. Catching it within 2 months or 14 years (as in my case) doesn't matter. It's getting a doctor to believe it and coming up with a viable treatment option and one that lasts long enough to do the trick that makes all the difference in how you do! That's what matters. So, just don't give up. Believe in the fact that chronic Lyme exists! Don't let others tell you it doesn't.

There are some wonderful threads written here, so look around the site. Ask questions when you need to. Educate yourself, because no one else is going to be your advocate. No one else will do your learning for you. In many cases, we are more educated about this than our own doctors. If you learn, and you have a doctor willing to care and learn more with you, you may yet do some good!

If you are interested, feel free to PM me for some links I have collected in my times here of great sites where you can learn more about Lyme.

*hugs*

jen

I'm so sorry you are dealing with lyme, but you have come to a great place to seek help...

FYI: I caught my lyme early much earlier then you within 14 days and as of today I'm pretty much AOK, about 95% better...But it took time and lots of it...I was bitten on July 22, 2007 and finally felt ok April of 2008.

To answer your question, My symptoms came on within 8 days of my tick bite, and only got worse and worse, so yes, they can come on fast for some, slow for others...All depends on the person...

Hopefully they will start proper treatment ASAP...Most don't test positive for lyme, I never did on the test from my doctor tested positive via igenix, and tested positive at my doctor a few months ago which shocked us all, as he also feels most will test negative when in fact they have lyme...

Listen to your body, give them hell when they won't listen, I had to do that with my ID doctor when I first got lyme, after 90 days worth of abx, he told me I was "Cured" (Fired him on the spot) well he was wrong and then my family doctor took over and he is the one that got me where I am today...

Keep a chart on all your sympthoms, rate them 1-10, 10 being the worse, I made a monthly chart and each month brought them to my doctors, that way I did not forget anything...I still fax to him once a month my chart (Lucky it has gotten very small)...But if he see's something new, or something go up in numbers, he will call me ASAP...So the chart really helps you and your doctor...

I hope this helped you some.

Julie

All great great advise so far. Just to give you a little insight. there are 2 main problems with the standard Western Blot blood tests. 1. Most of the time they are run through labs that DO NOT test for all of the Lyme Specific Bands - meaning bands (antibodies) that they can directly relate to Lyme. 2. Since the test is Looking for antibodies, and in MANY cases, our bodies DO NOT detect the infection, therefore DO NOT produce antibodies, how can it be accurate? The best lab for the job is Igenex - and there is also Fry labs...

OK - So i will give ya the - here is what you can do for you at home speach...

Adjust your diet. Dietary changes can really make a difference for many Lymies. Gluten Free - gluten can really exaggerated your symptoms - making aches and pains even worse...refined sugar - feeds disease - isnt really good for ya anyway...Lots of fresh fruits and veggies - especially those veggies...lots of healing qualities. I do recommend finding a Whole Food Supplement, as it can help to balance and stabilize your body - and get it working right, which will help treatment. A minimum of half your weight in ounces of plain water...also helps to regulate your body...and when you start treatment, will help to detox your body.

Upon starting treatment, expect the possibility of feeling worse before you feel better. There is a lot of bacterial die off which creates a toxic effect - called a herx (herxheimer)...so detoxing is very important. Not everyone goes through it - and those who do, do so to different degrees.

Like Fluffers said - educate yourself...one of the most important things you can do...

Feel free to PM me any time for anything

Christine

I really only take vitamens and drink water. Maybe eat fruit or veggies but i connected the fact if I eat pretty much anything else I feel like crap. I have been reading as much information as I can about it, and even though the test might be negative, if it is positive...id probably cry. Just knowing would take so much stress off.

I tend to be very sensitive to meds or sickness. I have had about 4 uti in a row in the past two months and they gave me antibiodics to help treat that. They made me sick and couldnt understand why. Around the end of them (3 weeks) I was feeling better. But once I got off them I got worse again. They waited another week and I had another UTI and put me back on more antibiodics and I started to feel like crap again.

I feel kind of stupid, like i should have caught it sooner. I had the bites, and the rash, and then the symptoms. I just didnt know about lyme disease.

Great idea on keeping a chart of what I go through. That would make things so much easyer! I always forget a symptom or two when i go to the doctor. I get about 3 symptoms in and my last doctor was like "woa woa woa, hold on a sec". then would look at all the tests Ive had done and sum it up as depression. I dont really like taking meds, I have so many bottles of pain meds and anxiety pills. But im afraid if im numb ill miss a symptom of somthing worse. My main thing is i want to be able to sleep again. And i can understand howyou guys get depressed from this. It's really taking its toll and it seems like nobody understands.

Thanks again for the advice and ill deff get started on a chart.

The advice that I can give you is be your own advocate. Don't take everything your doctors say at face value, because had I done that I would not be making the progress I am today. I left my other doctor after he told me it couldn't be lyme, even though I tested positive. Now, my neuro and infectious disease doctor are taking this very seriously. Am finishing up 30 days of IV rocephin and am going to ask for an oral antibiotic for at least another month. I think I am getting better. Don't have nearly the pain, but every few days, I feel extremely weak again.

Post edited by: dgayman, at: 02/05/2009 07:50

I am going to throw this out here, not to scare you at all, but anyone replying to this post, or your docs considered morgellons? I may put a post on it in Lyme facts and not ramble on it here.

Best of luck. You will find a great wealth of knowledge and experience here as I did.