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bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 2/22/2010 8:32 PM (GMT -6)   
would a few people mind posting what abx they have been on and how long and what their status is now.
also liver /gallbladder problems/ psychiatric

thanks
hep c , lyme
Dad has lyme


need some zs
Regular Member


Date Joined Nov 2006
Total Posts : 143
   Posted 2/23/2010 11:47 AM (GMT -6)   
I hope I can remember them all! I don't recall how long on each, but here goes. In the last 4 years, I've been on some combo oF:

Minocyclene/Benicar
Mepron
Biaxin
Samento
Colloidal Silver

I know there were others but there's significant brain fog at the moment.

Currently, I'm on 600 mg Zith + 500 mg Rifampin for Bart. Have been for 4 weeks. Have been herxing bad for the last week but it feels like it might be starting to break (I hope). No liver or gallbladder issues (thank God) but plenty of psychiatric, including brain fog, mood swings, rage, forgetfulness, etc etc etc.

Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 2/23/2010 1:58 PM (GMT -6)   
I did one week of doxy when diagnosed this summer, followed by one week of zithromax. Then saw second LLMD who put me on six months' of ceftin and 12 rocephin IV treatments. Just started bactrim last Friday. Used Samento for about five months and colloidal silver for a few weeks. Can't take doxy, biaxin, penicillens. Won't take quinalones due to possible tendon rupture.

Gallbladder removed in 2004, one year after first bite. Liver seems to be fine.

Mental stuff is anxiety and depression.

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3455
   Posted 2/23/2010 2:47 PM (GMT -6)   
I have tried doxy and cednefir for 14 days each, massive diarreah had to stop. I'm now on a weekly shot of bicillin and thena  daily of zithromax and seem to be tolerating both. Liver enzymes were fine, but I do get it check periodically. Mentally, lots of mood swings, being overly sensitive. Trying CELL FOOD seems to be helping with the energy.
Very mild left sided (could have fooled me with the "mild")  UC.Just found out 4 years into it I might have Lyme's Disease, going to a LLMD in December. Confirmed Lymes on 12/8/09 before my new antibiotic protocal from my LLMD, I  Started and stopped LDN ON 1/25/09 to mid May no improvements. Tried Asacol, Pentesa, Colozol, Sulfasulsadine and Lialda, they made me worse. A range of antibiotics, not much better. Supplements: Threelac, multi, iron, very low yeast/sugar/wheat  No UC meds at this time. Started Doxy and Cedfinir too rough on stomach, started Bicillin injection 1/12/10, once a week of injections. Feel much more energy on shot.


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 2/23/2010 3:27 PM (GMT -6)   
Hi Bucci!

I'm still on doxy, 400mg/day. No noticeable side-effects other than diarrhea which has been controlled with probiotics now. Haven't been to my second appt with my LLMD yet (March 6). Haven't had my liver enzymes checked lately but they were OK last time (AST 63, ALT 35). As you probably remember, I have autoimmune hepatitis so those numbers are good for me (I've had enzyme levels over 3500 before). I had my gallbladder removed in 1992. No psychiatric issues other than being sick and tired of being sick and tired!!!! tongue

I hope all is well with you!!
(((((hugs)))))
JoAnn
Lyme Disease, AIH, Hashimoto's, "lupus-like" CTD?, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

autoimmunediseasesgfliving.blogspot.com


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35705
   Posted 2/23/2010 7:11 PM (GMT -6)   
I was on Minocycline for 1 year at 200 mg/day, that was two years ago, though. Since then I've been on several (4?) rounds of Doxy for re-infections. I feel much better today than I did for the past 5 years. I was infected with at least RMSF when I was 4 or 5 years old & didn't get any dx until I saw a LLMD 3 years ago.

I have several 'conditions' I now live with; thyroid, intestinal cramping (IBS related), and some 'Lyme arthritis' (I have no arthritis markers in my blood & my doc said it then had to be related to Lyme or other co's. I also take a small handful of selected supplements that have made a difference for me.

I have had my gall bladder removed (diseased & full of stones), and my appendix had to be removed.

I'm in that stage where I'm trying to figure out what's next for supplements, herbal/homeo tx's,etc.

All I claim to know is that I am feeling better, functioning a bit better, and that I'm pretty much on my own for trying to find a doc that understands TBI's well enough to be able to investigate further. Between the stress of a long trip (minimum of a 5 hour one-way drive) and the cost of a LLMD, I'm kinda left on my own.

Hopefully I haven't 'muddied the water' with my post, and maybe it will encourage someone who finds themselves in this same boat!
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 2/23/2010 11:05 PM (GMT -6)   
Traveler..what is RMSF?
hep c , lyme
Dad has lyme


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 2/24/2010 1:35 AM (GMT -6)   
RMSF = Rocky Mountain Spotted Fever (another tick-borne illness)

Abx I've been on over the past year (all via IV due to swallowing/gut troubles):

Cipro - for about 8 weeks or so...helped some, but triggered the start of bladder pain, which I've had whenever I stop abx ever since then...
Was used initially to treat a skin infection.

Vancomycin - 1 dose. Severe itching of head/neck/shoulders/chest, severe bladder pain radiating down both legs. Doc said it was allergic reaction & to never take this abx again.

Ceftazadime - on and off from March '09-Jan '10. Initially given for pleural effusion w/ possible pneumonia, but whenever stopped, my Lyme symptoms seemed to flare up bigtime. Also seemed to get rid of a suspicious lump under the skin next to my feeding tube (some kind of abcess, probably).

Doxycycline - Jan '10-current. Given because the Ceftazadime seemed to not be helping to get me any more improved...I guess I had plateau'd on it. And I begged to finally be given something that directly targets the Lyme. Had nausea and heavy fatigue initially, doc says herx and to skip a dose here and there. I did and the herxing has stopped. But the Lyme symptoms are not as well controlled and my apatite is gone. Going to talk w/ doc about it later this week.

When I tapered down on the Ceftaz., I started getting major anxiety attacks. Those have subsided again now that I'm on the Doxy.

Gallbladder: Was diagnosed with gallstones in 1999 after having increasing nausea and a bad pain attack consistant with gallbladder issues. Gallbladder was full of large stones, and after surgical removal, they told me it was also very inflammed. Good riddance...I don't miss it. 15 years of daily constant background nausea disappeared with that surgery.

Liver: I've never had liver problems until July 2008 when the doctors put me on IV feedings due to inability to swallow and slow stomach emptying. The fats in the IV feeding caused my liver enzymes to spike, and I've been battling to get the liver enzymes back down ever since, even though they removed the fats from my IV food. They tell me I have "fatty liver" and my doc says the sugar in the IV food also can cause this. I'm tapering off the IV food, but it is a slow process. I also take liver support/cleanse herbs daily (Bupleurum Liver Cleanse made by Planetary Formulas...purchased at a local health food store) because IV Milk Thistle causes too many problems with the PICC line. Milk thistle via IV did make my liver enzymes go down to normal, though...may have to go back on them once the TPN is done.

My biggest problem mentally is forgetfulness and brain fog (slow processing...verified w/ testing). Sometimes it feels like I get lost in my own brain...or "stuck" mentally and cannot think or get my brain to function for a few minutes. Hard to describe.
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 2/24/2010 7:22 AM (GMT -6)   
razzle..have you done any glutathione IV
hep c , lyme
Dad has lyme


momtomonsters
Regular Member


Date Joined Aug 2009
Total Posts : 89
   Posted 2/24/2010 7:48 AM (GMT -6)   
I am currently taking the following antibiotics:
 
Doxycycline 300mg daily(since June09)
Zithromax 500mg/daily
Ceftin 500mg/2x daily
 
momtomonsters

1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 2/24/2010 8:21 AM (GMT -6)   
I was on a combo of abx for 2 years. I did about 5,000 MG daily.

Was rough at first, the die off maybe??? But got easier to handle as time went on.

Did 1 week of IV, then had an allergic reaction to it.

Still have gallbladder.

After 3+ years of being very ill....I have concentrated on treating my high viral load since Aug. and am now at about 80% out of 100%.

My Dr. who I saw yesterday feels we have started to really beat the virals down, and I am now trying just a low maint. dose of anti virals for the next 2 months to see where I am.

I still have some days where I feel like dog poop, but for the most part live my life. Sometimes stamina is really low....but Dr. said after all this time of being sick, even if I am "cured", "remission"...it will take a little time to build my body back up.


 Co-Moderator
Lyme Forum


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 2/24/2010 10:24 PM (GMT -6)   
Bucci,

I am not able to do Glutathione IV due to genetic variants in my methylation cycle. In other words, I'd get very sick if I got a Glutathione infusion.
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 2/24/2010 10:29 PM (GMT -6)   
Razz,, yes ..I remember now you told me that.

I'm trying to figure out where to get it cheaper than what I am paying 175 for a IV push gluthione. I really felt like it was helping my liver.
hep c , lyme
Dad has lyme


merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 2/25/2010 7:54 PM (GMT -6)   
175$ for glutathione?? I know where you can get it for 12.50 for a 2gram injection. I do it myslef. do you have a picc? I dont and I still give it to myself IV. email me and I will tell you where to get it. just put glutathione in the topic or I might not open it.

thats crazy!!

melissa
Chronic Lyme Disease,Fibromyalgia, CFS, PCOS, sleep apnea, hypothyroidism, type 2 diabetes, bulging discs to name a few


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 2/26/2010 5:30 PM (GMT -6)   
Bucci: You are getting ripped off if you are paying $175.00 for a glutathione IV. I was getting them in Boston for 1/4 that price. Thats sinful.  D

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 2/26/2010 6:26 PM (GMT -6)   
I know ...merrygirl ..did youget my email..I would love a glutathione connection. I just posted this link about how glutathione depletion is the onset of things like chronic fatigue and other stuff.

this place is a ripp off but I am feeling better and can't stop now but I cancelled the glutathione and told them it was too much. merrygirl...drop me a line
hep c , lyme
Dad has lyme


merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 2/26/2010 8:20 PM (GMT -6)   
I didnt get your email.... I will email you...

melissa
Chronic Lyme Disease,Fibromyalgia, CFS, PCOS, sleep apnea, hypothyroidism, type 2 diabetes, bulging discs to name a few


merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 2/26/2010 8:27 PM (GMT -6)   
email sent
Chronic Lyme Disease,Fibromyalgia, CFS, PCOS, sleep apnea, hypothyroidism, type 2 diabetes, bulging discs to name a few


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 2/26/2010 11:51 PM (GMT -6)   
Hey,

So I took Bactrim and Biaxin for two months, then Ceftin, Rifampin and Bactrim for four months, then Rifampin, Ceftin and Minocycline for going on two months now. I have also been taking Flagyl for two weeks on, two weeks off. My second week "on" started on Wednesday this week. It's all been oral- no IV.

Every time I switched antibiotics, I herxed to the point where I felt worse than I had before treatment- especially the first time I went on Rifampin. However, in the last couple months I have noticed a lot of improvement in my Bartonella symptoms (brain fog, mood swings etc).

My joint pain and fatigue haven't improved much, but the rest of my symptoms were getting better. Flagyl makes me feel terrible, but I think it is really helping.

ct girl
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 2/27/2010 11:55 PM (GMT -6)   
I'm on 1500 mg of tetracycline. I was diagnosed with babesia in 07 then later diagnosed in 1/09 with late stage lyme, and my dr believes I was infected in 07 when I got babesia. I had tick-born meningitis and felt so awful words can't describe, even after finishing doxy. My dr. is well known, past president of ILADS. Anyways he noticed something with QT waves in my EKG and now I am not supposed to take certain antibiotics. One of which is z-pack which is part of the babesia treatment (which sucks because he is wondering if I still have some lingering parasites)

The tetracyline has worked well, I feel pretty good considering, have stopped taking cymbalta. If I miss a few doses, I will start to notice more symptoms, I don't know if it is in my head or not. I have been on it for 5 months now.
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