I haven't been on here in a few months, so I just wanted to check on a few things.
It's now been 15 months since I contracted Lyme and bartonella, and I am still not the person I once was. Mentally, physically, emotionally, spiritually, I'm just not the same.
I wake up every day and still have a bad film-like feeling on my eyes and have much vision trouble for a few minutes. I have come to accept that my brain and emotions will never fully return. I waited too long to begin treatment. I didn't know it was Lyme for about 9 months. My libido has not returned to what it used to be either, and I'm only 20. It's quite depressing, really.
I have taken the following abx over the past year: cipro levaquin augmentin doxycycline minocycline uroxatral flomax detrol rifampin zithromax biaxin (currently on) clindamycin (currently on)
Before I got Lyme, I was the healthiest guy I know. Now I get sick all the time and feel like my brain, prostate and eyes have suffered severly.
So I have a few questions:
Has anyone done well on a Clinadmycin and Biaxin combo?
Does anyone know of any good libido-enhancing herbs or prostate health herbs?
I'm in Peru studying for the next few months and was thinking of getting a yellow fever and hepatitis b vaccination, is that a good or bad idea?
Has anyone else used Nistatin for yeast? I think my doc said to swallow it, but the bottle says to swish it in the mouth - I've just been avoiding it for fear that it would give me diarrhea.
I was once at 20-25% I'd say. Now I'd say I'm about 60-75% depending on the day. So I have made some definite progress.
Posted by adamm (Member # 11910) on :
Well there, hello from a fellow Madison-ite.
Only suggestions I can really make would be to avoid the vaccine
unless, in Peru, your life will depend upon you having gotten it,
and to really stay on the lookout for ADR's while on the
clindamycin.
Yeah--there are just soooo many toxic chemicals in vaccines; I think one
member actually said that the administration of a flu shot
precipitated a relapse
after they had been in remission for a really long time.
Posted by Lymeorsomething (Member # 16359) on :
Bernie, lyme can really throw off the HPA axis/endocrine system. I've been dealing with the same thing libido-wise. Treatment--if successful--should in theory correct endocrine dysfunction but it may take a while and there are no guarantees...
Have you had your hormones tested? Check thyroid and adrenal status as well as testosterone levels. If T is low, you may also want to check the pituitary, especially LH pulses...
You're young though so I wouldn't consider testosterone replacement until you give abx even more time. However, thyroid issues can sink libido too and they're more easily corrected...
Also many here have mentioned detox issues that have slowed or stalled progress. Consider detox and also rule out other co-infections both tick associated and viral load also...
L-arginine helps with libido sometimes but also may feed viruses (i think) if you have any...
I have found that herbal preparations don't always help too much when lyme is still active in the background...
Posted by Hoosiers51 (Member # 15759) on :
I would HIGHLY advise against vaccines if possible....I got a tetanus-diptheria-pertussis vaccine a year and a half ago (already sick with Lyme and co at this point), and it caused me a lot of problems. I became extremely ill following the vaccine (at that point I HAD gained "some" health back from Lyme) and I still haven't gotten back to that point where I was before the vaccine, and it has been a year and a half since I got it.
Also, doesn't look like you've ever tried Amoxicillin (must be given in very high doses for neuro or brain symptoms) or Bicillin shots (these are similar drugs). Amox helped me, and many antibiotics haven't.
I don't think I saw Bactrim on there either; many people report success with Bactrim.
I'm sure there is some antibiotic out there that will help, it is just a matter of finding it.
You may want to consider looking into babesia if not many drugs have helped you thus far, even if you don't have babs symptoms, and even if you test negative. In my opinion, when people see no progress at all, it is time to bust out the Mepron. Even just fatigue can be babesia. Mepron helped me. You need to take that one with Zithromax or Biaxin.
As far as Nystatin, they make it in pill form, I take 2 of the 500,000 unit pills three times daily. You might want to ask about that.
Posted by lpkayak (Member # 5230) on :
bernie-i just want to tell you i was suffering and undiagnosed and untreated for 15 years and i got a whole lot better once i started tx-so don't resign yourself to being that sick forever
i was suicidal at times and in really severe pain-bed-ridden
after 3 yrs high dose oral abx the worst pain is gone. i was set to have sugery to remove all joints in my toes to get rid of pain when i found my first llmd and got started on good tx
i am still not "the person i was" but i am not in pain all the time and i am happy lots of times and although i can't surf the big waves or ride my horse over the big jumps anymore...i do kayak, i ride, i walk and bike...and i have found new things that are mportant to me
life is different than i thought it would be-but is ok.
if you went thru that many abx in one year i question whether you were on each one long enough.
also look into pulsing. it really helped me.
also nystatin and other antifungals are really important. for a year after tx i continued to get well detoxing and using antifungals.
the nystatin pills help your gut. best to take them away from food. they don't give you diarhea-they make it go away.
the swish is what you do with the powder. it gets the yeast in your mouth. both are important.
diflucan and other anti fungals get the yeast in other parts of your body.
good luck. don't give up. you may not ever totally get rid of it-but you can control it and live a good life. did you see the british olympic athlete in the news? she is competing after being wheelchair bound with lyme. lp
Posted by bernieb4 (Member # 14654) on :
thanks for the feedback guys.
I have considered Bicillin shots and high-dose Amoxicillin - I think I'll ask my doc about those when I get home in December.
I also asked him about Bactrim, though it's the only known allergen I have. But I think it was just a rash when I was young, so I could try it at a small dose to see what happens.
I never thought I had babesia, but as one of you said, fatigue alone could be caused by babesia, and I've always had terrible fatigue from this.
I will look into L-Arginine for libido support.
I have worried since I first got sick that my thyroid was not functioning properly. Though I had all my levels tested back in December and they were "normal". I'm sure it's time for another test. Plus, I believe I've always had a very hyper-active thyroid, so even if it's still producing in a normal range, it may not be normal for my body. I hate when doc's generalize levels and sicknesses for everyone.
I have liquid Nistatin, but it says to swish it on my bottle even though the doc said to swallow it I'm quite sure. I think I'll start using that then. How often though? (I can't really get a hold of my doc from Peru or I'd ask him).
Adamm: It is nice to see a fellow Madisonian on here. What are NBR's or whatever you mentioned regarding Clindamycin.
I take clinda on tues and thurs 3 times and biaxin 1g the rest of the days.