My hubby has severe brain inflammation, (diagnosed through a Spec Scan)due to Lyme. This is the worst symptom he has from this disease, with only a few other minor symptoms, like sore knees and neck.
He has had terrible head pressure from this for over 2 years, from the minute he wakes up, until he goes to bed at night.
He is getting very impatient and depressed lately with his current treatment plan.
He has been on IV Rocephin and oral zithromax for over a month-with not one herx, and feeling exactly the same now as he did before starting the ABX.
Is this normal? Does herxing not happen for some people, even though they are getting better? In my hubby's case, he's not herxing and not feeling a bit better either.
When he asked his LLMD why he had no herxing at all,and was not feeling any better yet, she laughed and told him that he would not feel any improvement at all until a minimum of at least 3 months, no sooner. That was her only response.
I told him maybe it's time to see another LLMD for a second opinion. He didn't disagree.
He's so worried that his encephalitis is possibly being cause by something else other than Lyme ,that he wants to go to the ER this weekend with all of his records for a second opinion and another workup.
Despite all this, he is (thank God) still able to go to work everyday, and doesn't have many cognitive problems so far, other than forgetting words here and there, so we are fortunate that way-for now. We are worried about this encephalitis getting worse in the future.
Anyone have any thoughts about this? Does herxing not happen for some people? I think if he had herxing, or some symptoms, he would at least feel that the ABX were doing SOMETHING, something at all, to make some kind of difference in this ongoing head pressure he has, and it would make all of this more bearable.
Hope someone could help us out here-maybe a second opinion by another LLMD would help him?
[ 02-12-2009, 03:54 PM: Message edited by: donaldmn ]
Posted by dmc (Member # 5102) on :
Healing from Lyme is a marathon, not a sprint. His LLMD is right, it takes time.
My own LLMD has told me patients sometimes don't herx but GRADUALLY improve.
I didn't start noticing anything positive on the Rocephen until after my 5th week, but had to stop it due to gallstones. My stones dissolved on their own when Rocephen was stopped.
The IV abx I loved for improvement was Tigacyl but it is tough the first month...many haven't been able to tolerate it. I don't work so I was able to vegetate.
Maybe more will give their thoughts
Posted by donaldmn (Member # 16717) on :
Thanks dmc-I know my husband realizes that healing from this takes time, and he is a bit impatient about it, it's just hard to put myself in his shoes to know how he must feel everyday plus have to work.
I worry about him going on other ABX and becoming so sick he won't be able to function-we rely in his $$ as I stay home with our child. We don't talk about that but just take things day by day.
At this point, if a different ABX cocktail would make him really sick but help him feel better, I wouldn't care if he took a year off work-as long as he would be getting some relief from this head pressure stuff.
I do hope some other people could offer some input.
Posted by lou4656 (Member # 10300) on :
Sending a little encouragement your way.
Oh . . . how well I remember the head pressure. My brain felt like a zit that was ready to pop!
I did not herx, as least I am not aware of an actual herx. Was I feeling crappy? . . . yes. Did I herx? . . . don't think so.
The 3 month mark was when things really started to improve for me. At that point the fog began to lift and the pressure began to subside.
Six months after that the fog and pressure were completely gone, and I haven't had a headache since. That was in June 2007.
Try to hang in there! Tell your hubby to try a heating pad on the base of his neck. That was helpful for me. Get a heating pad that has the pad that you can moisten for damp heat. Hope it helps.
Hugs to you both!
Posted by donaldmn (Member # 16717) on :
Oh,wow, thanks so much for this info LouLou-I can't wait to show my hubby this post from you when he gets home tonight-I'm sure it will lift his spirits and give him a lot of hope and some encouragement. I think this head pressure thing is a tough Lyme nut to crack-the bacteria must be super resistant to treatment in this part of the body or something. Actually from what I've researched, it is.
Yes, that describes how his head feels-like it's gonna pop, plus constant ear ringing and ear pressure. Has got be be sheer hell, as this disease is in any part of the body it chooses to wreck havoc. Thanks so much for this post-he needs to hear things like this to realize he's not alone and that there is a light at the end of the long, dark tunnel!
Dawn
Posted by bettyg (Member # 6147) on :
read this!! may help too!!
Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients .....MUST READ!! EXPLAINS EVERYTHING !!
written by Marian Rissenberg PhD & Susan Chambers MD, The Lyme Times, Vol. 20, Jan-Mar 1998, pp. 29-32
note NEW LINK; DIFFERENT FROM WHAT WAS IN MY NEWBIE PACKAGE!!! 2.13.09 *****************************
Dawn, I think everyone is different. Most herx, some dont. etc.
I am amazed that your husband is able to go to work.
Yes, once it is in his brain, treatment is a marathon, not an event. My advice is to relax, let the medicine do its job, and enjoy life. This is a very serious illness.
Rocephin worked miracles for me, but I think it also pushed the spirochetes into cyst form. For others, rocephin was not a magic bullet, it was other antibiotics or forms of treatment.
I am all for second opinions, but it is too soon! After three months, you should be able to tell. Although, I must say that the antibiotics also stressed my body and eventually made me feel sick too, in spite of doing everything I knew how. So it gets complicated.
Hang in there and good luck.
Posted by kgg (Member # 5867) on :
My son did not see improvement with Rocephin until the three month point. Then it was incredible. He went from room bound to going out on errands with me every day. He finally pursued his drivers permit at 20 and eventually got his license.
I can see where your LLMD laughing would have irritated you. But it is such a blessing to be on this treatment and not herx, that I think I would have at least smiled at the question. My hat is off to your husband that he is able to maintain a job feeling as he does and under treatment too. Kudos!
Best, Karen
Posted by donaldmn (Member # 16717) on :
Many thanks again for the responses-keep them coming, please!!
I showed my hubby these posts last night and he realized he just has to hang in there until atleast the 3 month mark-if no improvement by then, he may pursue a second opinion.
In the meantime, he has a couple of Neurologist appointments next month just for the hell of it-can't hurt to hear their opinions, even though we all know that most Neurologists don't understand Lyme anymore than the average GP does.
I'll keep everyone posted on his progress-Love this board!!