What is an "official" remission? Does this mean you feel 100% normal? I would think to say you're in remission you'd have to have zero symptoms left. I was just wondering what others considered a true remission.
Posted by seekhelp (Member # 15067) on :
Have no clue. If I ever get anywhere near this, I'll let you know. Posted by bcb1200 (Member # 25745) on :
THat is typically how it is defined. YOu stop treatment and are cured / in remission when you feel 100% for 2-3 months and typically have CD-57 above 160.
Posted by sixgoofykids (Member # 11141) on :
I have no symptoms and have not had symptoms for over a year. I take nothing for Lyme Disease or coinfections, though I do work on detoxification as I think everyone needs it and I do still take KPU supps, thyroid, and iron.
Posted by wgshuckers (Member # 27869) on :
six, What were your main symptoms? How did you know it was safe to stop taking abx? Even if my symptoms went away I think I'd be afraid to stop abx.
Posted by Keebler (Member # 12673) on :
- Once symptoms are gone, after a couple months' time, it is not good to continue abx. However, there are some very good supplements that can help. Just eating 2 cloves of raw garlic a day will be a huge help.
As for hoping for 100% recovery/remission, for many, damage may not allow that. A good LLMD can tell the likelihood of what may be ongoing infection that still needs active treatment or the buffer zone of a couple months - and what might be permanent damage.
Of course be very wary of any IDSA doctor who discounts active infection and calls that damage. That's why an ILADS LLMD or LL ND is so important. They can tell the difference after having worked with you over time.
Even those with varying degrees of permanent damage usually feel so much better that the damage equation is easily managed, even sort of forgotten after a while. The kinds of damage that can be residual are around matters of nerve damage or bone loss from infection but there can be other things, too.
Hepatitis can be temporary during infection/treatment or become permanent, depending on the degree of scarring and other factors. Approximately 20% of lyme patients develop hepatitis and, for some, that can become chronic. Still, there are things to do about it.
Diabetes can also be a result of lyme, however, again with good management that has a chance to turn around but it may not necessarily do so even with the best care.
Vestibular damage (the entire ear system) can also be temporary or permanent, to varying degrees. That is why it's so important to avoid loud sounds during treatment, though. Even for a year after taking antibiotics, the ears are much more likely to be damaged from sounds that would not damage ears not taking antibiotics. Cell phones and in-the-ear pods can damage ears, so can loud concerts, etc.
Even a hairdryer can cause permanent damage when on abx and for a year afterward. Ear plugs should be worn around a hairdryer and anything of that volume or louder.
All this talk is not to scare you, but it can be sobering. Nevertheless, if we know all this, we can take better care all along the way. Still, management of residual damage is usually still a whole new world of feeling so much better.
So, looking ahead, when you do reach a good solid remission of a couple months (however that will be for your own body) , then you may want to consult an ILADS-educated LL ND (naturopathic doctor) for suggestions for support supplements (to rotate) to be the "third leg" of support to nutritious foods and the right degree of activity for your body.
If you were to have a flare, you'd be right back in touch with your LLMD (or a LL ND who may then pull out the bigger guns) and actively address the flare so that it could be quickly squelched.
For many, once remission has been solid for a couple months, they just get better and better as long as they take excellent care of themselves.
Good luck. -
Posted by geo (Member # 18333) on :
This concerns me too with respect to: how do you really know when the lyme is all cleared if you are taking so many supplements to "mask" the symptoms - for example, all of my issues are inflammation/joint related and I am taking so much to help with this that I could get the pain to a more tolerable level and think I am all cured when in fact, the buggers are eating me from the inside out.
Posted by wgshuckers (Member # 27869) on :
Thanks for the informative reply keebler.
I'm concerned about my joints (finger joints currently) being permanently damaged. It's just not easy to tell what is infection or inflammation or bone loss or permanent damage of some sort. I asked the LLMD last week if she could give me an idea of what she suspects is physically going on with my joints/tendons/muscles/ligaments/etc. She said she thinks it's most likely my body creating inflammation from the infection. Although she did say it could be permanent damage. "Inflammation from infection" sounds like an autoimmune issue to me. What I would give to be healthy again. All the money in the world wouldn't make me happy if I had to deal with chronic pain and headaches forever.
Posted by Keebler (Member # 12673) on :
- You say: " 'Inflammation from infection' sounds like an autoimmune issue to me." (end quote)
Actually, that is what many rheumatologist think but, if it is from infection, it is not autoimmune. The immune system is trying to attack the infection - when infection is adequately addressed that reaction should calm down.
the body is not attacking itself for no reason (that would be autoimmune) but it is trying hard to attack a very tenacious chronic stealth infection and the various parts of the immune system get a bit overworked &/or too worn out. Th1 and Th2 sort of flip from what might be expected.
Another reason for a LLMD, they know all this but, still, it's not clear exactly how any one body is going to come out on the other end of lyme. We all just do the best we can.
With supplements to help reduce the cytokine storm from infection/inflammation, there can be less damage. Turmeric & its extract, Curcumin, are vital. -
Posted by wgshuckers (Member # 27869) on :
Do you think the swollen finger joints are from direct infection? Are there actual bacteria in that location that's causing the inflammation? It's such a mysterious infection. I'm hoping and praying that it's reversable and isn't destroying my hands permanently.
Posted by 'Kete-tracker (Member # 17189) on :
I always understood remission in Lyme to be (finally) free of all symptomology associated with the disease.
Not that all forms of the borrelia are now banished form your body... that will likely always be a medical 'sweet dream'.
Rather that the Lyme critters no longer are of a significant enough number to affect your health.
Posted by annier1071 (Member # 28977) on :
Kind of scary reading this. I am diagnosed neurolyme and having seroius balance and electric shock issues in my brian...white matter on mri...i have severe nerve pain now that I started just the oral abx. I had some vertigo for many many years...I am afraid now that I will be treated but never get this dizziness to stop so i can walk again...
Posted by pepperspeck (Member # 18837) on :
annier1071, my daughter has severe balance issues and neuro lyme. Her balance (and vertigo) improved significantly after starting treatment for lyme. It is still an issue (and she does have vestibular damage..not sure if that can even go away) but she is able to do more physically now. Everyone's situation is different but I hope that you too find some relief from the balance issues.
Posted by onbam (Member # 23758) on :
White matter lesions can go away with treatment, definitely. Dizziness too.
Posted by wgshuckers (Member # 27869) on :
I'm concerned that my swollen joints won't ever get better.
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