Nefferdun and Willowrose
-- I was glad to read your posts (tho sad that this happens for you), about
how slowly you are often able to respond. This is a HUGE problem for me. I work w/ some real 'B's who are often very nasty and insulting. Because I have chosen to not become the people they have become, I refuse to return the insults and remain quiet. However, ALWAYS, after I get home, I think of responses that would have been brilliant! Well Dang. It. And yeah, part of it is just being dull.
Again, agreed, Neffer, the mental and emotional is the very worst. I have said it on here before, over and over. Negativity, irritibility and depression are such big parts of this disease thta it becomes difficult to impossible to help oneself. When the blackness takes over, there is nothing to bring you out of it except some time. (at least mine would come and go). When it comes, I feel total despair, hopelessless, self hatred, and find no meaning to life. It is horrible. It is impossible to grasp any positive thoughts or feelings.
Lyme has changed my personality and who I am, and I resent the hell out of that!
Neffer, I don't have the insomnia because I drug myself every nite -- I have to knock myself out. I know that is bad, but the only reason I'm not suffering insomnia, which, for me, when drug free, has been chronic and at times debilitating since 1972. Insomnia is the next worst, next to the mental and emotional -- plus it only makes all the other symptoms worse.
I dont' know how to help you there, except to agree that is unbearable. I had it so bad at one point I was suicidal. Not being able to sleep is a holy NIGHTMARE and it is painful. Is there no Dr there that can at least help you w/ the insomnia? Don't tell them about the lyme or any self medicating. If a Dr can help you w/ the insomnia -- maybe w/ an antidepressant, maybe you could find a little relief for this one symptom. I know that is scary too, so you'd need to find a real Dr who cares and who will look out for you.
I believe that if you cannot sleep, your body can't recover from anything. Sleep is one of the times that your body uses to heal itself.
Again, all that I have been able to tell you is that we understand, we sympathize, and we are praying and pulling for you. We are all still looking for answers. I, too, believe we are being exploited. I am not certain yet that there is a cure. Or most likely, just as w/ cancer and many other diseases, some can be cured and some never are.
At this time, I am my own experiment. After some very bad herxing, I have run out of Amox and felt some relief now for almost 2 weeks. For a few days, I believed I might be cured, tho I still have too much fatigue and back/neck pain. (Maybe those will never improve?)
If the worst parts come back w/ a vengeance, then I will be one more piece of proof. (Meantime, I remain on a reputable LLMD's waiting list)
Lastly, Nefferdun, I do not know enough about levaquin, except I know I don't like it. If a REALLY good Dr prescribed it, I might take it. If it helped you so much, maybe you should try it again, but leave out the exercise program, or maybe just do some stretching or yoga or some easy walking. Or do the same w/ whatever other abx you choose to take. It is more important to cure your lyme/bart than to get yourself in shape, right now, even if you feel like it.
I, too am wondering about pulsing. could it possibly work to take an abx until one feels better and then stop. That could be improvement or it could be the lyme going into cells or hiding or Ls or whatever else it can do. And then, when it first sticks it's nasty little head out, WHAM IT again. And do this over and over. I wonder if that would be better than just staying on the abx constantly?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia, chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.