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Lyme Disease ForumsGeneral & Supportjust found llmd going to start treatment - herxing
11/04/2011 08:07 PM
kev15
 
Posts: 104
Member

I just drove back home from my first llmd visit - 3 hours away. i am confused and pretty scared of the treatment he has put me on. He has put me on zithromax 500mg a day, rifampin 300mg twice a day, nystatin two twice a day, innate flora 50 once a day, lyme plus transfer factor two daily, interfase plus two daily, coenzyme b complex two daily, cryptoplus 2 full droppers twice a day, not counting my reg meds and a gluten, soy, and dairy free diet

i am confused beyond belief and am scared to death hearing what i could possibly deal with during herxing. Herxing is another thing i have no idea what to expect. Is this too much med too soon? I am a teacher with a family in a lot of medical and educational debt - i have to work everyday! What should i do? don't know what to make of all of this.

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11/04/2011 10:17 PM  Top
ontong
ontongPosts: 260
Member

hi, I can understand your fear. For one thing, it is overhwelimg just to try to take all these pills, even if they were just sugar pills. It gets to be like we have to plan our day around taking pills. And they are expensive. As for herxing, it feels terrible, there is no doubt about that. And if an LLMD has never had lyme, I think they often just do not understand how painful it can be. I think perhaps you should just start out on half doses of those pills for a week or so.

If you start to herx, you will know it. if you simply cannot work, for example, back off the anitbiotics until you feel better for several days. Then dig in again. Some docs will want you to just go full bore. Mine, who I have to say is quite reknowned, has told me to make my own calls, to listen to my body. If I just feel slammed by the meds, I back off a bit.

As far as the meds and other things he has you on, I think they are in line with what I have been put on all at once, and other friends.

Good luck. It is a scary thing to have this illness. Im sitting here typing with my numb hands, burning feet and paralyzed face. You may notice that your symptoms get worse on the abx. Thats a herx right there. But you may be able to handle that. If you are curled up in a ball from pain or debilitation, that is another thing.

John


11/05/2011 02:32 AM  Top
Bettyg
 
Posts: 26620
VIP Member
I'm an Advocate

hi kev,

we understand where you are coming from; confusion; scared of the UNKNOWN.

did they write out a schedule for you for all these meds and your others so you know WHAT TIME/S TO TAKE THEM?

please privatemessage me with the name of the llmd you went to see ok; curious more than anything.

hang in there; DON'T GIVE UP; you're just starting; i'll leave the comments for those taking those meds and others just starting meds. listen to THEIR 1st hand experiences and advise.

go with your GUT FEELINGS ALWAYS!

HUGS/PRAYERS, bettyg, leader

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
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43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.

11/05/2011 11:18 AM  Top
WiscLamLymie
WiscLamLymie
 
Posts: 1325
Group Leader

I have heard that the Rifampin can really get you. If it's too much, back off and talk to your llmd. Remember that this is not a race. You cannot beat it faster with more meds at a time... to a degree.

Sometimes more than one obviously work better together, etc., but trying to sprint is not usually great. My llmd says that herxing too hard is not beneficial. It takes a long time to kill the buggers.

DETOX DETOX DETOX. Lots of detoxing will help you get through your workdays. Baths with 2 C Epsom Salts, 2 C Hydrogen Peroxide, and 2 T freshly grated Ginger is one thing I do. Soak as hot as you can stand, about 20 minutes, then shower to remove the ginger pieces Smile

Also drink lots of lemon juice in water. I juice about two lemons a day and put in my water.

Another thing is detoxing with Milk Thistle and Cat's Claw.

Hope these spark your interest and can help.

Was diagnosed with Autonomic Disorder, POTS, Interstitial Cystitis, and Fibromyalgia. True story is I have late stage Lyme which has caused these things. Just began the fight in October 2011 (have been full-blown Lyme since Sept. 5, 2010), and WILL be victorious! Positive bands: IgG 41 and 60; IgM 23 and 41. CDC positive!

Not a doctor, not anyone of any legal standing... just someone on the search.
(Translation: Please do not take anything I say as medical advice. Always see your doctor when needing medical advice.)

11/05/2011 11:40 AM  Top
waxby
waxbyPosts: 4128
VIP Member

~~~Hello kev,

~~~Starting right off with those high doses may be too much too fast. If you haven't started yet, begin at half the dose. Or if you have started and you get hit unbearably hard try this ...

~~~On ramping and pulsing...

~~~When a remedy dose hits too unbearably hard, your dose may be too high, and that is after making certain this is not an allergic reaction.

~~~Take a day or two or three off if you must, until the "Herx" calms down to a reasonably, more tolerable manageable, level, and begin again, every other day, or more, if you must, thus pulsing...

~~~Begin again at a lower more tolerable dose, if necessary, such as 1/2, 1/4, or 1/8 the dose thus ramping down.

~~~If one more dose hits too hard again, take every other or third day off, pulsing, until you arrive at a more tolerable Herx event level and tolerable therapeutic dosing level.

~~~As your Herx effect lessens over time, begin turning up the volume by adding back some dosage level, ramping up, and then closing the pulsing gaps.

~~~And always take PRO-biotics between doses of ANTI-biotics to re-constitute intestinal flora as ANTI-biotics destroy both bad and good bacteria. Take pro-biotics, breaking open the capsule and starting in your mouth, the beginning of your digestive system, 2 hours before and after dosing, after anti-biotics have cleared the stomach and intestines, are a good rule-of-thumb.

~~~Unfortunately, feeling worse before feeling better, the Herx, is par for the course, but is a useful gauge for pulsing and ramping and consistently, persistently, keeping fire under the critters butts.

```~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Lovey-Dovey, Mitchell~~~

~~ "The way to 'Heaven' is to bring it with you ..." -Mitchell
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