I figured that only the experts, which you all are- the people who actually have lyme- would really know what was going on with me. I had a fall from my horse about 5 years ago where I hit my head and broke both my arms, and have had many repercussions from it such as confusion, learning disabilities, attention difficulties, etc. as well as being diagnosed with chronic pain syndrome, fibromyalgia, and a slew of other pain & nerve diseases.
Up until a few months ago I had been staying at a relativly good state, but had put myself on a strict regimend of extreme diet and exercise. The diet consisted of refraining from any sugars, salts, seasonings, white products, caffiene, carbonation, or alcohol, and my exercise consisted of miles and miles a day.
I became too thin over time, and after 2 years of this, became irradically starving. I tried eating real food again, and did not have a reaction, leading me to believe I was cured. Immeditatly I called the local stable, and began riding again. Things could not have become any better. I went from a size 0 to a healthy size 6, and found myself with more energy than ever before.
Up until 2 weeks ago when I was hospitalized for almost seizurlike activity, falling, weakness, tremor, and disorientation. After the MRI, CAT scan, and EEG showed nothing, as well as having clean bloodwork, I checked myself out after speaking with a very prudent psychiatrist. However, nothing was resolved, and I still had tremors and would fall, I had difficulty walking straight, and there was a high pitched ringing in my head.
I did some research based on a friend's suggestion, and found that I could possibly have lyme. They are beggining to treat me for it now, to see if I herx, but I am a sophomore in college and I don't want to have to leave school, which I think might be the inevitable. I am losing my hair, and my joints are beggining to get achy. I can no longer run, nevermind those 8 mile tracks I used to do around the island. I have continued my physical therapy exercises I did at the hospital as well as walking. I have begun falling asleep in class, and tiring very easily. I can sleep for hours at a time and it wouldnt matter.
It has been a very frustrating road for me and if in fact this is lyme, than I have had it for about 5 years. I should also mention that around that time, I also went to the doctor for a rash and they treated me with antibiotics. I am falling behind in school, and am straying from my 4.0 gpa as a nursing major. Thankfully, my family and friends are supportive, but I feel like I am such a burden sometimes.
If anyone has any insight as to similar symptoms, or what you think this could all be from, please let me know. I need to get treated and better so that I can return to learning. I am forgetting things and am getting scared.
Thank you, Jag9905
Man, have you been through a lot. So sorry that you are so sick at the present and unsure of what is going on. Not a good feeling but you've come to a very supportive site with knowledgeable, caring people.
Your story is quite complicated at least for my mind. But I've read it a few times and think I get your history. You are definitely a fighter and that is a GOOD thing.
Some questions: You say that rash goes back 5 years - were you treated for it before fall?
Horses and ticks often go hand in hand... true in your case? Have you been around them a lot?
What state are you in?
Were you on antibiotics after fall in reference to breaks, etc?
What antibiotic and dosage are you currently on?
I 'quoted' part of your post and your symptoms can all be found on 'lyme symptoms' lists if I'm correct. I can't wait the ringing in my right ear to cease!!
Originally Posted by jag9905
...falling, weakness, tremor, and disorientation.
I still had tremors and would fall, I had difficulty walking straight, and there was a high pitched ringing in my head. I am losing my hair, and my joints are beggining to get achy. I have begun falling asleep in class, and tiring very easily. I can sleep for hours at a time and it wouldnt matter.
It has been a very frustrating road for me and if in fact this is lyme, than I have had it for about 5 years. I should also mention that around that time, I also went to the doctor for a rash and they treated me with antibiotics.
I know you are afraid and it is understandable. But if it is lyme, you need to get to a LLMD (lyme literate medical doctor) asap and get after the bacteria! You are a fighter and I have no doubt, will attack it with a vingence. Knowledge is power so read up. Do rest. Read some posts on detoxing. Laurie has great treatments she uses on her sons. When the bacteria dies off, especially under treatment, toxins are left in the body, making you feel like crap. Ridding them will be a big relief.
Hang in there. Ticker, the the lyme guru will be along soon, I'm sure and offer worlds of wisdom. She has saved me (and countless others) valuable time, and money with her breadth of knowledge...
Peace to you jag. School is still on, road just has a turn.. cj
Just as cj said you mirror a lot of the symptoms that we "lymies" have. I never thought about ticks and horses but why not? I agree that you need to seek out an llmd and at least pursue the bloodwork and then even if negative make an educated decision on your symptoms. A lot of lyme patients need to do that. Unlike you my problem is getting to sleep but after meds that seems to be going away little by little. You will get lots of info from this website so don't hesitate to ask any and all questions you have. Somebody will know the answer.
Please don't put off medication because of school. Granted after a while you may herx and miss some of your classes but the way you describe it you aren't exactly on top of things right now. If you aren't treated things will definitely get worse but with the meds at least you know you are trying to kill the bacteria.
I hope you don't have lyme but if you do, forge ahead and beat it. Best of luck to you and keep us posted on your testing.
Hi Jag - Welcome to the Board! Sorry you have to be here and I am really sorry for everything you have been through so far.
There are a few things that stand out in your story to me...You have been around horses - I know quite a few horse enthusiasts and riders who have tick borne illness - In fact, Komondor here on the boards was around horses a lot - Maybe she will find your post and chime in...
The other thing is that you started to have problems after the trauma of an accident and this is quite common with lyme and other tick borne coinfections. They can be in your body hiding out waiting for the opportune time to strike and often follow pregnancy, a traumatic accident, divorce, move of residence etc... So that is another thing that stands out.
I have the hair loss, the CFS/Fibro symptoms, my periods are all wacked out right now, digestive disturbance...my list goes on and on too. I had a lot of profound dizziness and heart palps too which it doesn't sound like you are having which is good but the seizure stuff is scary stuff I am sure.
I am glad they have started you on treatment but it is VERY IMPORTANT to go through a knowledgable lab (although you can't count on lab tests) for testing for LYME, BABESIA, EHRLICHIA, BARTONELLA and MYCOPLASM. I would go directly through IgeneX labs in Palo Alto, CA and have the Western Blot for Lyme, the dye test for Babesia and the all the other coinfecton testing. I was negative through LabCorp and then through Quest for lyme and all coinfections. It turns out after going through IgeneX I tested very positive for IgG antibodies, equivocal for IgM and all the coinfection tests that I had were extremely positive.
I would find an LLMD (lyme literate M.D.) in your area which someone here can help you with if you post the state in which you live and they can direct you to a good LLMD that is trusted. Also you could try contacting a local Lyme support group for info. on a good LLMD.
It is important that you get tested and treated properly because if you have coinfections they should be treated first before the lyme is aggressively treated otherwise you may never get better. Babesia, for instance, is actually a protozoa and is like malaria so antibiotics do not get rid of it - you will need an antimalarial first to get rid of this then go after the lyme. Many patients have treated for a year to find out that there is an underlying coinfection that must be addressed so their treatment ends up being longer than expected.
Good luck Jag. So sorry you are dealing with this. I am so thankful you are in nursing school. Please educate the other future nurses on lyme disease and associated tick borne illness...the medical community at large is grossly uneducated about it and it is costing people their quality of lives and many their lives all together.
Thank you all for you're help... I think that I am heading in the right direction... I appreciate all your help and your condolences. I will be sure to educate my fellow nurses and students, so rest assured. God Bless, and more insight is always welcome.
I am sorry you have been dealing with so much for so long. Are you seeing a Lyme knoweldgeable doctor? This is the most important thing you can do. Have you been tested for all the co-infections ticks can transmit? Many people who have Lyme are co-infected so it is very important to be tested. Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be successful. What are you currently being treated with?
Try not to be so hard on yourself. Tickborne infections are serious and your body is trying to recover. You need to get plenty of rest, eat well, and drink a lot of water. It can take time, but you can get better.