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LF1980
Regular Member


Date Joined Jul 2008
Total Posts : 78
   Posted 10/18/2008 12:39 AM (GMT -6)   
After 6 months of misdiagnosis, I was finally treated for lyme and have been treated now for 2 years. I have to say that I am much better but a few pesky symtoms are still there. I actually don't have anymore of the pain (headaches, joint, muscle, etc). I do however, have dizziness, brain fog, overall 'head' issues that make me not feel like myself. I take cymbalta for the seratonin deficiency and it has def helped over the last year. I continue to improve just very slowly. Has anyone else had any issues like this and what have you done that seems to help?
Thanks, L

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 10/18/2008 7:29 AM (GMT -6)   

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
Regular Member


Date Joined Jul 2008
Total Posts : 78
   Posted 10/18/2008 8:08 AM (GMT -6)   
Thanks for your reply.

I do have Bartonella as well. All my bloodwork is good, except I have a high vit D125. Also, a bit of a blood pressure issue as well.

I really trust my doctor and I think she is amazing, but I feel like people who are sick for a lot longer than I was, get better quicker and that makes me wonder.

I am wondering if the brain involvement is just what makes it take longer to go away, plus the low seratonin issue.

maggiemoo
Regular Member


Date Joined Oct 2008
Total Posts : 56
   Posted 10/18/2008 9:48 AM (GMT -6)   

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


Educate yourself
Regular Member


Date Joined Jun 2012
Total Posts : 23
   Posted 8/4/2012 2:41 PM (GMT -6)   
Just bringing up an interesting old post. Does it take longer for all the residual symptoms (mind) of Lyme to disappear?

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 8/5/2012 9:25 AM (GMT -6)   
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!
Co-Moderator Lyme Disease Forum

Missyouall
Regular Member


Date Joined Apr 2012
Total Posts : 65
   Posted 8/5/2012 4:42 PM (GMT -6)   
I haven't posted for a while as I've been pretty busy trying to get well. I started treatment with my LLMD in March and I am currently taking 2 abx, an herb ( artemisinin) and a probiotic at bedtime. My main symptom was persistent anxiety, along with night sweats and horrible short-term memory. The LLMD believes I also have babesis.
Since I started, I've had good days and bad, but I would like to ask if there are any patterns to healing. For example, in May, I suddenly went 9 straight days during which I felt perfectly fine, just like my old self, and I thought I was cured. Then - boom - right back into the anxiety and doldrums. Up and down, never knowing how I'd feel from day to day. Then, lo and behold, I just finished another 9 days of feeling really well and thinking once again that I was cured. Then, two days ago, back to the anxiety with a bit of crying thrown in for good measure.
Tell me, please...is this how the healing process goes? I just want to feel like myself.
With God, all things are possible.

Tickle
Regular Member


Date Joined Mar 2012
Total Posts : 150
   Posted 8/5/2012 7:45 PM (GMT -6)   
I'm pretty sure that's how it goes when healing lyme and coinfections.

It's great to have good days, though!

Missyouall
Regular Member


Date Joined Apr 2012
Total Posts : 65
   Posted 8/5/2012 8:47 PM (GMT -6)   
It sure IS great to have those good days cool And believe me, I am thankful for every moment of them.
I suspect, but have no way of knowing, that I have had this illness for decades. If that is the case, does that mean it will probably take me years to recover??
With God, all things are possible.

LindaLew
Regular Member


Date Joined Sep 2012
Total Posts : 333
   Posted 9/6/2012 10:45 PM (GMT -6)   
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.

borderlyme
Forum Moderator


Date Joined Jul 2011
Total Posts : 1486
   Posted 9/7/2012 9:59 AM (GMT -6)   
Whether we "completely recover" is more a matter of perspective - they say no one ever actually gets rid of all the bacteria, but we can get to feel totally well! We've got tons of bacteria in our bodies, some good, some bad - our goal is really just to get it all under control!

Usually it takes more than just doxy to get us feeling well though - please let us know if you need help finding a lyme-literate doctor who can help you recover more fully!
Co-Moderator, Lyme Disease Forum

Missyouall
Regular Member


Date Joined Apr 2012
Total Posts : 65
   Posted 9/7/2012 11:18 AM (GMT -6)   
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?
With God, all things are possible.

Mystery Illness
Veteran Member


Date Joined Dec 2011
Total Posts : 767
   Posted 9/7/2012 11:18 AM (GMT -6)   
Do your symptoms subside when laying down/is it orthostatic? The reason I ask is because Lyme can cause POTS (Postural Orthostatic Tachycardia Syndrome), a dysfunction of the autonomic nervous system. It can take years for the autonomic system to heal and re-regulate. Many things can cause it-viruses, physical stress, connective tissue disorders, and ofcourse Lyme. If you notice that your symptoms are worse when standing, you can do things to relieve symptoms including increasing salt and fluid intake, recumbent/supine cardio. exercise, compression stockings, leg muscle strengthening, and sleeping w/ your entire body at a 6-10" incline (w/ your head higher-this helps to retrain the body to have orthostatic tolerance). I have all of the symptoms that you do and was diagnosed 8 months ago w/ POTS. I have searched for an underlying cause and reason for my other symptoms and just found out 2 weeks ago that I have Lyme Disease.

Missyouall
Regular Member


Date Joined Apr 2012
Total Posts : 65
   Posted 9/7/2012 2:09 PM (GMT -6)   
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.
With God, all things are possible.

borderlyme
Forum Moderator


Date Joined Jul 2011
Total Posts : 1486
   Posted 9/8/2012 9:06 PM (GMT -6)   
With lyme, the healing process is usually just the way you described it. When I first got really sick, I had about 3 hours per month that I felt well. Eventually it was a couple of days...now I'm at the point where I start to feel worse and expect it to last forever, but it's hardly even a day or so. In the meantime, doctors don't usually stress or even address the importance of detoxing, but that's one thing I think all of us here agree on - detoxing is crucial and it's what makes your symptoms manageable. There's some information in the "new to lyme" thread about detoxing - dry skin brushing, epsom salt baths, drinking plenty of water, with lemon usually helps - I also drink a lot of fresh juice and try to eat a really clean diet - exercise, if you can handle it, sauna, oil pulling - there are also prescriptions and supplements you can take. If you don't yet have a detoxing strategy, I'd strongly suggest you add that to your daily routine - it really does make all the difference in the world!

Anxiety was one of my worst symptoms for a long time - I know how tough that can be! But rest assured it does get better! I don't know that anyone could necessarily say how long it's safe to take antibiotics, but plenty of us do/have taken them for years on end, and we're all still on the path to healing. Just keep up with those probiotics!
Co-Moderator, Lyme Disease Forum

Missyouall
Regular Member


Date Joined Apr 2012
Total Posts : 65
   Posted 9/9/2012 12:34 PM (GMT -6)   
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.
With God, all things are possible.

Mystery Illness
Veteran Member


Date Joined Dec 2011
Total Posts : 767
   Posted 9/9/2012 6:44 PM (GMT -6)   
As far as the detox baths, they can make you feel worse at first because it can also actually kill some of the Lyme. Right after I found out that I has Lyme, I took 2 in one day and I had major joint pain while trying to sleep that night, which wasn't even one of my worst symptoms before. Have you tried foot baths instead? Maybe that would help? I'm new to this, as I was just diagnosed, but the way your symptoms suddenly come and go sounds like it's possibly herxing?

Missyouall
Regular Member


Date Joined Apr 2012
Total Posts : 65
   Posted 9/9/2012 8:06 PM (GMT -6)   
Would I need to add something like Epsom salts to a foot bath?
With God, all things are possible.

Mystery Illness
Veteran Member


Date Joined Dec 2011
Total Posts : 767
   Posted 9/10/2012 6:26 AM (GMT -6)   
Yes, Epsom Salt and hydrogen peroxide. There are other "formulas" on the new to Lyme thread in the detox area.

borderlyme
Forum Moderator


Date Joined Jul 2011
Total Posts : 1486
   Posted 9/10/2012 7:00 PM (GMT -6)   
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.
Co-Moderator, Lyme Disease Forum

Missyouall
Regular Member


Date Joined Apr 2012
Total Posts : 65
   Posted 9/10/2012 7:21 PM (GMT -6)   
Thank you, Borderlyme and Mystery Illness, for all your help and encouragement. Just knowing I'm not alone and that my symptoms are not really unique is an immediate mood booster. If I didn't have this forum to turn to, I don't know what I'd do....I'd definitely want to throw in the towel. Why is it that when I have a good day I'm convinced I'll never feel bad again, and when I'm feeling lousy, I can't even remember what it was like to feel good. Weird, isn't it?
With God, all things are possible.

Mystery Illness
Veteran Member


Date Joined Dec 2011
Total Posts : 767
   Posted 9/10/2012 7:30 PM (GMT -6)   
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!

Missyouall
Regular Member


Date Joined Apr 2012
Total Posts : 65
   Posted 9/10/2012 7:58 PM (GMT -6)   
Thank you so much. Because of my age (66) I feel especially impatient because I had plans to spend my retirement in serving others. But now that I'm finally retired, all my energy seems to be spent on this illness, except for those precious few "good days" when I can immediately re-focus on my life plans.
With God, all things are possible.
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