Post-Lyme?

Hi L.  It is good you have had a lot of improvement during treatment.  It can take time to get better.  It is my understanding that Lyme doctors will treat until a person is symptom free plus at least two months longer. 

Do you have any co-infections?  Have you ever had your thyroid, adrenal, and hormone levels tested?  Lyme can affect these levels and when they are not optimal, it can cuase many symptoms that are similar to Lyme.

LF1980

WOW! I can really relate with you.  I was bitten in 1988 and went undx for 5 years. the little critters invaded my spinal fluid and did a job on my frontal lobe.  I lost my memory, dizzy all the time, the brain fog was so thick, I could not care of myself or be left alone for any period of time and the joint pain was horrible.

Once I found my LLMD everything changed.  I started my tx and could see improvement on a slow and steady incline.  For me it took 8 years of tx to finally be off my meds and say that I was cleared with lymes.  At the time there wasn't the info on co-infections and so while I thought I was done with all this the babesia was increasing in my blood. I was just dx with babesia  2 weeks ago and so now I'm traveling down that path. 

One of my neurologist suggested I play video games to work the frontal lob and help with the brain fog.  I think it helped, or at least it gave me a great excuse to play hours upon hours of Mario on Nintendo!

Hang in there, do little things to help with the brain fog, like write things down and do things that make yo feel good.

maggie

Hi Educate yourself,

When there is Central Nervous System involvement, it does take longer to recover. Getting the curative agents across the blood brain barrier is difficult. Also, making sure the bacteria is "scared out" of all its hiding places is a long process.

Basically, however, if a person still has symptoms, they should not stop treatment. Doing so invites debilitating relapses and living a "half life". I keep seeing people around limping along with tons of symptoms, having been told they are "cured". It's a crime, in my humble opinion!

I'm pretty sure that's how it goes when healing lyme and coinfections.

It's great to have good days, though!

Do we ever completely recover? I have found that the years brought decrease in symptoms but it is like keeping a bad dog in the pen..... sometimes it breaks out and causes all kinds of problems. I usually have to take Doxy a couple of times a year now, had Lyme since '88, Dx in '90. Of course back then there was not much info so I have been undertreated from the beginning.

I began treatment on March 1, 2012, and am currently taking 2 abx (generic Bactrim and Clindamycin) + Artemisinin (an herb in pill form) + a strong probiotic. On the whole I feel better (my primary symptom is anxiety), but I had more good days last month than I did this month and I'm beginning to feel as if I'm just spinning my wheels. There have been days when I feel 100% fine - I even went 11 straight days feeling really well, but for the past 3 weeks or so, the anxiety has been in charge. Is there anything I can do or is this just the way healing goes? Also, for how long can one safely continue taking 2 different abx twice a day?

Thank you for your response, Mystery Illness. No, I cannot say that the symptoms subside when I lie down. The anxiety, or "bad feeling" just appears put of nowhere and for no reason. It disappears days or weeks later as quickly as it came. It makes me feel anxious and yet sluggish at the same time and I just drag myself through the day. about 3 weeks ago, I also started noticing that my body would hurt all over when I woke up, as though I'd been beaten by 2X4's all night long, and now when I bend my knees to kneel, my knees absolutely kill me.
Although I just turned 66 last week, I had never had any aches and pains or knee trouble, so at times I really feel that I have simply begun to feel pretty consistently worse.

Thanks for the encouragement, Borderlyme. I'm going to check out the hints on the "new to Lyme" thread which you suggested. I can tell you, though, that I've already taken several baths with Epsom salts and hydrogen peroxide to try and detox and awoke the next morning feeling even worse. Even a plain old hot bath seems to aggravate my symptoms. I do drink tons of water and one 12-oz glass of lemon water per day. My exercise consists of walking my dog, usually at least a mile a day. I really thought that when I had 2 good runs of 9-10 successive days of feeling quite well that I was really on the road to recovery, but I've felt pretty terrible for about 3 straight weeks now, and I'm wondering why I'm taking these abx and an herb and probiotics. I get so frustrated that I can't be myself, that this Lyme (or whatever it is) messes with my mood - sometimes several times a day - and I'm dragging around trying to put on a normal face for friends and most of my family. Right now, my mood is in the dumpster, I have a dull but strong ache under my left ribs, my heart is sitting somewhere in my throat, and my stomach has bloated up again and is extremely sore. Sometimes all those symptoms lift quickly and mysteriously which is what happened last night about 9PM. Within seconds, boom, gone - and for the last few hours of the day I feel like my old self again. I go to bed, read my prayers and a good book, but when I wake up, all the symptoms are back again to say Good Morning. Long post, so sorry. Just so confused, so discouraged.

Would I need to add something like Epsom salts to a foot bath?

A lot of us have the same experience - at night our symptoms lift a bit but then mornings are often the toughest! It does get better, it just takes so much patience! But when you get there, it'll be so worth it - I promise! You just need to find the right balance for you. You can do the epsom/peroxide baths with a foot bath - or try the full bath with cooler water - or a bath with cayenne, mustard, ginger and rosemary - I like doing that one once in a while as it's a good mood lifter.

Yes, forums like this are truly a life saver, aren't they?!?! I continued to search for an answer to my illness after coming to this forum, due to the confirmation and encouragement of people with Lyme on here! I can't imagine where I would be now w/o it so I hope to be able to 'give back". I'm so new to Lyme and glad that I was already able to provide some encouragement to someone else :o)! I feel the same way as you as far as good and bad days. The bad days can be so frustrating and feel like such a set back, but I do think that the bad days will become less and less often over time. Stay strong; you can get better!