posted
My hubby has been in treatment for a short time. He has done about 7 weeks of zithromax (250 mg daily Mon-Fri) and every other week 500 mg. of Flagyl.
He has not really herxed that we can tell. There were days here and there where he felt a bit nauseated, lightheaded and dizzy.
As far as the rest of his symptoms ~ it really just seems like it always has - some good days, some bad. The good days don't seem any better and the bad days don't seem any worse.
Is there a chance he doesn't have lyme disease? The LLMD seems pretty convinced he does, but shouldn't he have herxed by now?
I don't know which is worse . . . believe it's lyme and not sure what's happening, or go back to the deadend diagnosis of chronic fatigue syndrome!
He sees his LLMD on Monday. I guess we'll see what he thinks about all this.
signed . . . discouraged spouse Posts: 160 | From Abington, PA, USA | Registered: May 2005
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posted
Hey - I think we all get those periods of doubt. I went through about 3 months of looking for an alternative diagnosis for my husband before coming back to LD being the only answer. I know that people go on and on about having a herx but the truth is that not everyone has them. Give it time.
posted
My daughter did not herx for the year she was on orals. Her first herx came after she was on IV Rocephin.
Good Luck.
Posts: 55 | From USA | Registered: Sep 2005
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
My personal view on this is: My father was dx-ed with MS 27 years prior to finding out he was LD positive.. long wait and a waste of time.. caused his death too! I'd like to sue the medical field for that one! but it wont bring my dad back!!!
Anyway, had he known years ago that he was infected and had he been treated then he might not have lived such a horrible existence.. Poor man was 71 years old before anyone ever ran a test for LD.. he was a hunter too!! they treat you for MS, FM, CFS, but ultimatly you die a slow horrible death.. I will not elaborate on CFS and FM but they are paralell to how they treat MS.. you are made as comfortable as possible and you are destined to die, ultimately.. you are dead..
at least with LD they can treat you and you regain some form of quality to your life..my dad who was almost brain dead and bed ridden prior to LD DX was mentally alert the last year and ready to walk again... total turn around ..
it was unfortunate the damage done by the lack of early treatment was what ended up taking his life.. he choked on chicken.. he had had several strokes which left his swollowing mechanism defective...virtually non existent... oH the lesson that life teaches us..
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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posted
Too soon to tell if he will herx or not. And yes, some people never herx.
He may not be taking enough zith. Most are given 500mg per day. I'd be willing to bet that he would herx on that!
500mg of flagyl per DAY or WEEK? I took at least 750 mg per day of flagyl. Some folks are able to tolerate double that much.
I'm not a very large person, so if your husband is a big guy, I'd definitely ask the LLMD about his dosages.
My opinion on CFS and FM is that it probably does not exist. My cousin was dxd with CFS, and I was dxd with FM. This went on for years and years.
We both found out we had Lyme instead. We were exposed to the same ticks.
Even if there IS something such as CFS and FM, there is no REAL treatment for the cause. I suspect a bacterial problem of some sort that is either Lyme or something as yet unidentified.
Hang in there!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
A lyme doc told me he treated someone diagnosed with CFS but had no luck. So, either it wasn't responsive to that particular treatment even tho it was indeed lyme, or it was something else.
My suspicion is that all these diseases they don't have real causes for or decent treatments will turn out to have multiple causes.
But lyme is frequently misdiagnosed as FM and CFS, so some of it (but maybe not all) is caused by Bb.
How long was your husband sick before he got any treatment? If a long time, then count on a long treatment.
A thought on the dosage....maybe your doc wants to ramp up, in order to check the response.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Hi, How does one really know if the reaction is caused by the disease whether it be MS, CFS, FMS, or Lyme, OR on the other hand if it is a Herx reaction?
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I think there is always a chance it isn't Lyme. Or, there is a chance that there are coinfections undiagnosed along with the Lyme.
When I started treatment, I promised I would give myself a year. I saw improvement at 7 months.
I also think that CFS/FM are both syndromes that have a cause. In some cases, I believe that cause is Lyme. But there are probably many causes, some of which we have not yet discovered.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
The doses your husband is taking are very low. It is possible it isn't enough to be killing bacteria, in which case he wouldn't herx. He also won't get better.
It's also possible those are not the right medications for him. People respond to different drugs, depending on the strain of infection. I would try higher doses and/or other antibiotics before giving up on treatment. Many people have no response to Zithromax, though it has been a good medication for me.
CFS and FMS have many causes, some of which are infectious. Of course it is possible your husband's illness has a different cause, but it seems too soon to give up on treatment. Some people never do herx, so you can't go by that. But if there is no improvement either, try different antibiotics, and see how he does.
livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Danser my aunt was DX with CFS and FM... none of them gave her any relief.. when she started on ABX she got violently sick.. where most everyone in our family never did... I never not did my kids nor did my mother, father or sister.. HERX not the way most people discribe and certainly not the way my Aunt did..
Regardless of the HERX-ing... I would definately not give up on this treatment.. she was reduced to 50 mg of minocycline BID.. she only takes 50 mg once a day.. she can not handle the HERXing... and is afraid to ever go back on doxcy.... My aunt never seems to get better no matter what she does.. but everyone in the family agrees that she isn't getting worse.. and she was always getting worse every year.. after 2 years she is still holding out ... no progression of deterioration and for some people that is all they can hope for...
I hope this is reassuring.... Linda D
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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My husband take 500 mg per day Mon-Fri every other week along with the zithromax 250 per day Mon-Fri every week.
I also think it's a low dose. Not sure what the doctor's thinking is in this. I will ask when we see him on Monday.
My husband has been sick for 15 years so I'm not expecting miracles in just a few weeks. I just was hoping for some small sign that we are on the right track.
Posts: 160 | From Abington, PA, USA | Registered: May 2005
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