Today was a terrible day. Could not get out of bed, was late to work, once there, my co workers informed me that I was pale and sick looking. I looked in the mirror, indeed I was. I went to see my boss, who immediately sent me home. The entire way home I was crying. I NEVER cry, but since my major onset last June, I have been a basket case. I came home, slept for 3 hours, got up, still tired. I was barely able to walk. The best way to describe how I felt was kind of like I had taken a large sum of LSD (not that I would know what that feels like!) I was hearing things through a tunnel, and my spatial processing was WAAAAYYYY off. This is the worst I have felt since the onset. The depression is back, which had gone away after the initial Doxy treatment. I had great day this past Saturday. Felt great, tastebuds had returned. no numb tongue, excessive energy. It has been quite bad since then. Horrible, in fact, with today being the worst so far. I do not get this. The Doxy cleared up some of my symptoms. The IM Rocephin seemed to be making a difference, and now, with 14G a week of IV Rocephin, it seems I am back where I started. It seems ANYTHING could be considered a HERX. I am having a tough time deciding if I am just not responding at all, or the gradual onset of crappy symptoms is the result of the ABX inflaming the disease. I am pretty skeptical of Western medicine as it is....
This dumb disease has consumed my entire life. I am so mad at it, I want to find it and beat it silly with a 9 Iron. Anyway I started this new diet a week ago, and initially I felt pretty good, but I am in really rough shape today. Yes, tommorrow may be better, but I really need to be done with this for good. WHAT WILL HELP???
I have not yet discussed co infections with my Dr. He is supposed to be an LLMD (Dr D. In Northern NJ) I have only seen him once so far. I suspect that I could have Babesia, in addition to other co inf's. He seemed more concerned about getting me onto the IV than anything. I see him again in 2 weeks. What should I ask for?
I am desperate, as I am sure thousands who come to this website are. Will this Lyme crap just be around forever? I would rather be dead.
Posted by Florence1 (Member # 22960) on :
Hi....I honestly dont know the answer....but for me I did the iv rocephin last year and honestly nothing got better until I went to my LLMD in Jan and she tested all the coinfections which I now treat also.......
I can now see light at the end of the tunnel although the tunnel is very long and some days unbearable..........
I just wanted to tell you that eveyone here has felt the same at points throughout their journey........some have great improvments some still trying to find the answer........but honestly your not alone, going crazy, doing the wrong thing etc .........
I think in time comes acceptance that this is not an easy fix.......you need to know what you are facing therefore need to test for coinfections then maybe you will see some light......
i wish you good luck with your treatments....lymenet is full of people going down the same road with great advice.......
Posted by 17hens (Member # 23747) on :
Lymeboy,
I know exactly how you feel!!!
I was bitten April '09 and got sick. My family doc gave me doxy and I started to feel better although not normal. And when I had finished it, I got a lot worse!
I had coinfections and therefore treating lyme with doxy (or rocephin) did not work. You must treat the coinfections before treating the lyme or you just go in circles.
If your doctor doesn't know this, please do not wait another minute! Find an LLMD who is ILADS trained!
Have you had bloodwork done thru IGeneX? Or did your doctor give you a clinical diagnosis?
With the right treatment, you will feel better! After 9 months of floundering, I found such a doctor and am feeling much better.
Don't be discouraged! Now is the time to be strong! Look deep inside and find the strength to get correct treatment for yourself! You can do it and you will get better!! There is hope!!!
Posted by lymebytes (Member # 11830) on :
Lyme treatment for most is a marathon, not a sprint. If co-infections aren't resolved, lyme cannot successfully be treated.
Unfortunately, there is no fast track to wellness. There are many strains of lyme and all the co-infections and therefore finding the best treatment for you, can take time.
Ultimately there are many factor's to getting well, how long you have been sick, how co-infected you are, etc.
In the meantime, you have a lot of company and support I believe, is essential with those that understand that we are all hoping/looking for remission.
Posted by BoxerMom (Member # 25251) on :
Your post brings me back to my first few months of treatment. My sense of taste returned and my energy improved dramatically. Years of depression lifted.
Then I felt like I'd dropped 5 tabs of acid. It's just like you're describing. Like being in another universe and watching everyone from far away. While I didn't feel off balance, per se, I couldn't walk straight and bumped into walls constantly. I felt like I was making sense in conversation, but I didn't feel like I was really there.
That lasted for weeks. I'm sure my brain was crazy inflamed.
Then the depression, crying and suicidal ideation hit. And that lasted for the better part of the year. In hindsight, I should have managed those symptoms better. But I was so determined to recover my health, I felt like I was willing to suffer whatever came my way.
I was tested and treated for co-infections from the get-go, and I've only taken oral abx.
I understand your question, "What is herx and what is disease flare?" It's a million dollar question for sure.
I don't know what to say other than be sure you are tested and treated for co-infections. Maybe you are over-herxing and don't need IV abx. Maybe you are major herxing and killing bugs like crazy. If your doc is ILADS trained and has enough clinical experience, s/he should know.