posted
I am just about at the six-month mark of treatment with heavy-duty oral antibiotics and I'd like to get other members' take on my progress (or lack thereof).
Background is that I was sick for almost seven years, if not more, before I got any form of treatment. I was very debilitated, mostly with fatigue, memory problems and brain fog.
The good: I can exercise again. I used to be very active. Then I could barely do my daily walks let alone aerobics and weights. I was out of breath, my heart would race (sometimes so badly that I feared I'd pass out) and my joints would ache for days afterward.
I believe my heart block is more or less cured. No more palps, no more racing heart, no more shortness of breath, and my blood pressure is lower than it was before I got sick.
My joints only ache on occasion, but not to the point that prevents me from doing squats and lunges.
The bad: The fatigue is still awful. I can at least make it through the day now but not without feeling like I should have gotten several more hours of sleep. This is true regardless of how much sleep I've actually gotten.
Short-term memory is still terrible. I used to be ultra sharp. I now have to write everything down. I still have major focus problems too.
Brain fog is still there, but I have some moments where I at least feel more present in life.
So my question is: Is this as good as it gets? Are my biggest problems ever going to improve or do I just have to learn to live with them.
The quality of my life has steeply declined, but at least now I can do some of the things I used to do, just nowhere to the degree that I once could. That's hard to accept if it's going to be permanent.
Posts: 90 | From Pennsylvania | Registered: Oct 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Honestly, it sounds like you are doing pretty good for being on oral abx for just 6 months.
I've been on oral abx for 4 months-sick for 11 years, rebitten this November.
I am nowheres near being able to squat or lunge or do anything close to getting my heart rate up-so I think you're making great progress!
My memory and brain fog is not getting better either, nor is the crippling fatigue.
Have you been dx'd with any co infections? I was just dx'd with babesia, and started treatment, and that has helped with head pressure somewhat.
I am glad you posted-we have about the same length of treatment. It is good to read about other's progress
Best wishes Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
It will get better than that, keep going!
Posts: 845 | From Northeast | Registered: May 2011
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Kat:
It took 4 months of Tindamax before we started to see improvement of our daughters neurological symptoms. Then maybe 9 more months (only the next 2 on tindamax due to adverse reactions) before we felt the neurological were gone.
It was 2 years total but then after being off for 5 months symptoms started coming back with a relapse confirmed in month 6.
The co infections complicate things.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
You are definitely getting better!
My question is, do you think if you lowered your exercise you would have more energy left to do other things?
My husband takes Membrin and Phosphaline for his memory issues and it seems to help.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The fatigue is the last symptom to leave.
Don't know what meds you are on, but if you have not already added a cyst buster (metronidazole/flagyl or tinamax) then you can expect to see a lot more improvement when that is added to your treatment.
You are not allowed to do aerobic exercise at this point. If you do it, you will set back your recovery. Only non-aerobic exercise is allowed--weight lifting, for example.
"there is now evidence that a carefully structured exercise program may benefit T-cell function: this function will depress for 12 to 24+ hours after exercise, but then rebound. This T-cell depression is more pronounced after aerobics which is why aerobics are not allowed." (page 31 of Burrascano)
Here, he tells you that aerobic exercise depresses you immune system for too long a time, so it is not allowed. You need to do everything you can to boost your immune system, not depress it. So, switch to weight lifting every other day. That is how I got rid of of lyme. I had it 10 years before diagnosis.
Read Burrascano pages 31 and following to learn exactly how weight lifting every OTHER day helps a person recover from lyme disease.
You are doing pretty well for 6 months into treatment. Stay the course.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I am not doing anything hardcore yet in terms of exercise. Mostly just walking and light weights. However, my LLMD told me that it is okay to exercise. I have tried not doing any to see if that helps with the fatigue, but it does not. In fact, exercise often gives me a second wind in the latter half of the day.
My immune system has been strong for quite some time, even while I was sick. In that regard I consider myself fortunate.
I have not officially been diagnosed with co-infections. My doc says that the tests are not accurate and give a false sense of security when they come back negative. Therefore, he treats based on symptoms. We do not think I have Babesia, but Bartonella is a good possibility.
I have been wanting to discuss the possibility of a cyst buster. At what point in treatment is that most beneficial? Would now be an ideal time?
I've heard Flagyl is rough. Is one better and/or more tolerable than another?
I did Doxy for three months and I'm now on my third month of triple therapy (Zith, Plaq and Mino). My doc mentioned that Tetracycline might be next.
I have a Lyme friend who has told my progress is great, but having been sick for so long and still feeling awfully fatigued most of the time, it doesn't feel like it. I still have my doubts I'll ever be rid of the tiredness, memory problems, concentration issues and brain fog. SIGH!
Posts: 90 | From Pennsylvania | Registered: Oct 2012
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posted
Sounds like you're responding well to the treatments - they say it will get better and I'm going to keep going!!!
I've been treating for 8 months. I have long term chronic Lyme.
Started treating Babs - having new issues, I'm looking at it as it's hitting the Babs and will get better over time. only treat for 1 1/2 wks for that.
I take Flagyl on the weekends - I have not had any issues with Flagyl. Remember, every body reacts differently to the treatments.
Fatigue is my biggest complaint! I keep plugging away though - got to!
Good luck with your treatments and keep thinking positive thoughts and know that you will get better some day!!!!
Posts: 250 | From East Coast | Registered: Jan 2013
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