Adventures in Antibiotics

[euphoniaa]

Well, hello, abx gang! I've followed this forum sporadically since I've been at TiMS, intrigued by any alternative MS treatments that show promise – glad to know some have gotten benefits from it. With my history of med & supplement reactions, though (including a disturbing vertigo episode during a 10-day Ampicillin treatment years ago that left me crawling through my house for a week), and my general medphobia, the idea of personal, extensive abx treatment has landed pretty far down on my own list of treatment choices.

However... I’m currently in the midst of an Accidental Antibiotic Regimen due to a recent episode of pneumonia that landed me in the hospital (that story is here: http://www.thisisms.com/forum/general-d ... 20438.html ) I was asked on that thread if I had been tested for CPn, but I don’t think so. I have pages & pages of tests from the hospital where they tried to identify the source of MY pneumonia, but I don’t see CPn test results listed. The final consensus amongst the many docs who hovered around is “aspiration pneumonia” from my hiatal hernia and reflux, like I told them in the 1st place.

And…it won’t go away either. I’m now on my 4th different antibiotic since mid July and I have a couple of questions for you abx experts.

1. The 1st antibiotic I took was 10 days of Doxy, and by the 11th day the pneumonia had progressed so far that I was gasping in pain in the ER. X-rays showed that the early traces “suggestive for developing pneumonia” from 10 days before had now consolidated into two “rounded densities” that may need biopsy instead. Does the total ineffectiveness of Doxy mean that CPn is NOT what I’ve got in my lungs?

2. Any suggestions on amounts of probiotics? I’m listing my abx & probiotics below in case anyone has comments. I’m now waiting 2 hours between the Pro-Bs and the Anti-Bs and that seems to help.

**Doxycycline - 10 days, 200mg/day
**In Hospital: alternating IVs of Levaquin & Merrem (3 days?) plus 4 probiotic caps/day (Edited to add that Merrem gave me a one-sided headache for a couple of days)
**Out of the Hospital: Oral Levaquin for 10 days - one 750 mg tab/day - plus two probiotic caps (10 billion ea)
**One week off
**Augmentin (Amoxicillin plus Clavulanate) 875/125 twice a day plus two probiotic caps (I’m halfway through a 17-day prescription)

3. After so many abx is it now too late to even test me for CPn? Not that my expanding team of docs would be interested, and… I wouldn’t know which one to ask, and… they’re more concerned about investigating me for misc cancers right now anyway. Sigh.

So far these antibiotics haven’t even rid my lungs of the unidentified pneumonia (I was still coughing up a rainbow of delights until this week) so that I can do a followup CT scan, and I haven’t noticed any effect whatsoever on my MS. In fact, to my great surprise, I’m not even getting much in the way of side effects from abx at all (just moderate constipation). I’ve had MUCH worse reactions from vitamins & supplements like omega 3’s, for instance. I know all that, because I’ve kept an extensive daily symptom chart for 9 years to note my reactions to stuff and my MS changes/progression (New to the Chart! A brand new Pneumonia Column!).

Wishing all of you abx success… and healthy, hearty lungs.

[bartman]

I'm no expert, nor do I have MS. However, based on my cousin who was diagnosed in 1996 with MS and became deathly sick in 2008 when we discovered he tested positive for CPN, Lyme, Bartonella, Babesia, Mycoplasma Pn. and EBV. He started treatment with minocycline 100mg twice daily then double it and thats when improvement really started. He too became sicker initially and it took awhile for him to start feeling better. He has done the full cpn protocol and it has helped immensely.

Now, don't disregard the reaction to the Doxy...It is normal to feel worse before you get better when treating these diseases. In fact you may have lyme also and be having a herxheimer reaction. Did they test you for that in the hospital? If I were you I would try and continue the doxy if you can and find a doctor who will prescribe the entire protocol because it does work it just takes time. Since it appears that you have not used any immunosuppresive MS meds or steroids I believe you can really improve alot!!

I would also find on internet and read Dr. Burrascano's 2008 guidelines. Levoquin is his drug of choice for what he describes as a bartonella like organism (BLO). Bartonella can cross react with CPN. Many people who have lyme have coinfections and usually they have multiple coinfections. I would also examine the possibility of babesia, sounds like it could be that too. You really need to find a good doctor willing to think differently and prescribe longterm antibiotics. They are not easy to find. 10-20 days of antibiotics will not help, you need to make a longterm commitment and use multiple antibiotics at the same time. Many many people are misdiagnosed with MS when they really have Lyme and coinfections. Read up on the Lyme disease controversy too.

Ironically, CPN and Lyme require the same antibiotics, sometimes you need higher doses with Lyme. Furthermore, minocycline (doxy's cousin) is used to treat MS and is very effective. The truth is while you believe doxy is "ineffective", the reality is that your reaction is often used as clinical confirmation of an infection be it Lyme or CPN. My advice, from second hand caretaker experience is continue doxy as long as possible add the zithromax and pulse the tindamax...you will be a new person !! No steroids or immunosuppresives! Hopefully others will chime in too but you should read CPn Help.org and the patient stories.

[euphoniaa]

Now, don't disregard the reaction to the Doxy...It is normal to feel worse before you get better when treating these diseases. In fact you may have lyme also and be having a herxheimer reaction. Did they test you for that in the hospital? If I were you I would try and continue the doxy if you can and find a doctor who will prescribe the entire protocol because it does work it just takes time.

The truth is while you believe doxy is "ineffective", the reality is that your reaction is often used as clinical confirmation of an infection be it Lyme or CPN.

Hi bartman, thanks for your comments. But...you may be missing my main point, which is that I did NOT react to Doxy at all. In fact, Doxy apparently didn't kill a single microbe in my lungs, but instead, the small colony of microbes gathered there appears to have feasted on the Doxy instead and multiplied exponentially into a such a bulbous mass of pneumonia that it resembled lung cancer. In only ten days. And only THEN did I get the spasm that sent me to the ER - at 4:30 on a Friday after a full week of work.

And I did not have a herxheimer reaction to any abx so far. I don't feel worse from these meds. That's where my questions come from. I've felt so good that I've worked full-time through this whole thing, except for doctor appointments, Mon & Tues in the hospital (plus Sat & Sun), and 1 day to regain my strength. I'm amazed that I'm getting so little response from abx; I barely notice I'm taking them! I don't understand that.

At least the hospital treatments stopped the pneumonia onslaught, though they didn't clear my lungs completely and I still coughed up enough to alarm my docs. But I don't notice much else going on. The main reason I avoid other side effect-producing MS meds is that having MS is bad enough - I don't want to be sick, too! I've kinda felt the same about abx treatment for MS. I don't want to do something that actually makes me feel sick!

So, does anyone else want to try answering my questions? Or want to weigh in on why the abx used for MS, CPn, Lyme, etc., did nothing for me? I have definite MS - I pass every test. Thanks for your input!

[bartman]

Ok, perhaps I am reading this wrong...but you said you took 10 days of doxy and on the 11th you ended up in the hospital. First, doxy is a bacteriostatic drug, it does not kill it stops the infection from reproducing in hopes that your immune system will take car of the rest. However, it is thought that doxy at higher doses like 400mg-600mg may be bacteriocidal. Furthermore, E. Sapi has proven (in vitro) that within 20 minutes of doxy hitting Lyme it converts from the l-form to the cyst form. Perhaps the doxy use created this huge mass on your lung! That is why you need the Tindamax which burst open the cyst. That is why you need the Doxy which after it burst open will take care of the l-form, that is why you need the zithromax which really helps get deeper into all the tissues.

I'm still convincing my cousin he doesn't have MS despite the fact that he does have a few lesions. To me MS means you have an untreatable incurable disease. If he has gotten so much better with the use of antibiotics, than he must not have MS. I prefer the term demyelinating disease. Infection can cause demyelinating disease.

From what you have written you have taken 35 days of antibiotics, it's just not gonna clear the infection. You gotta treat with multiple antibiotics to get the bacteria in all of its forms and you have to treat until you are well. Bottom line, I don't want to sound arrogant, I want you to get better but these are stealth infections and require long term treatment until they are gone.
One last thing, I personally took doxy and bactrim ds for over a year cause I had trouble breathing and just after a couple of days of adding the bactrim ds I felt as if I had a new set of lungs it was that incredible! I could feel the infection burn away like acid on my lungs.

Good luck, I hope you continue to improve, the hard part is finding this website and then finding a doctor to prescribe! As you can see I am a big believer in the protocol.

[lyndacarol]

Euphoniaa – Perhaps I have no business adding my two cents here, but can't help myself.

Is it possible for your doctors to obtain a sample of the fluid in your lungs and culture it? Or perhaps it is in your bloodstream and could be cultured from there? If they can identify the bacteria, would it be easier then to prescribe the most appropriate antibiotic?

[euphoniaa]

Euphoniaa – Perhaps I have no business adding my two cents here, but can't help myself.

Is it possible for your doctors to obtain a sample of the fluid in your lungs and culture it? Or perhaps it is in your bloodstream and could be cultured from there? If they can identify the bacteria, would it be easier then to prescribe the most appropriate antibiotic?

Hi Lyndacarol,

That's what they did at the hospital...I have pages & pages of those cultures & blood tests. I don't have staph, strep, Legionnaire's Disease, etc., etc. I assume it's too late to test me for all the ones that are discussed here at TiMS now that I've taken so many antibiotics, but I'm not sure.

No one cares any more...they're too excited about diagnosing me with cancer.

I do wonder about the specific questions I asked here.

[euphoniaa]

Ok, perhaps I am reading this wrong...but you said you took 10 days of doxy and on the 11th you ended up in the hospital. First, doxy is a bacteriostatic drug, it does not kill it stops the infection from reproducing in hopes that your immune system will take car of the rest. However, it is thought that doxy at higher doses like 400mg-600mg may be bacteriocidal. Furthermore, E. Sapi has proven (in vitro) that within 20 minutes of doxy hitting Lyme it converts from the l-form to the cyst form. Perhaps the doxy use created this huge mass on your lung! That is why you need the Tindamax which burst open the cyst. That is why you need the Doxy which after it burst open will take care of the l-form, that is why you need the zithromax which really helps get deeper into all the tissues.

I'm still convincing my cousin he doesn't have MS despite the fact that he does have a few lesions. To me MS means you have an untreatable incurable disease. If he has gotten so much better with the use of antibiotics, than he must not have MS. I prefer the term demyelinating disease. Infection can cause demyelinating disease.

From what you have written you have taken 35 days of antibiotics, it's just not gonna clear the infection. You gotta treat with multiple antibiotics to get the bacteria in all of its forms and you have to treat until you are well. Bottom line, I don't want to sound arrogant, I want you to get better but these are stealth infections and require long term treatment until they are gone.
One last thing, I personally took doxy and bactrim ds for over a year cause I had trouble breathing and just after a couple of days of adding the bactrim ds I felt as if I had a new set of lungs it was that incredible! I could feel the infection burn away like acid on my lungs.

Good luck, I hope you continue to improve, the hard part is finding this website and then finding a doctor to prescribe! As you can see I am a big believer in the protocol.

Hi again, bartman, and thanks for your efforts. I just doubt that antibiotics are the answer for my many, many, many physical ailments at this time. MS is actually pretty far down on my list of concerns. I'm fortunate the reflux/hernia that caused the pneumonia hasn't already smothered me to death.

For now, I just need my lungs clear for scans and the latest one, Augmentin, may be doing that. I've stopped coughing. But finally...tonight...the abx slammed my digestive system and I need probiotic advice quick!!

[bartman]

florastor is a good probiotic

[SarahLonglands]

Euphoniaa, pneumonias can be caused by other pathogens than bacterial ones: viral, but aso fungal or parasites.

Chlamydia pneumoniae can be tested for after you have started an antibiotic which works agaist it: I wasn't tested until I had been taking doxycycloine for three weeks: The test looks for antibodies, not the thing itself.

I hope that they don't find any cancer!

Sarah

[hopeforA]

But finally...tonight...the abx slammed my digestive system and I need probiotic advice quick!!

I only use VSL3, i've tried many others but they're just not good enough for my very sensitive gut. You may also want to add some saccharomyces b.

[lyndacarol]

Apparently, prebiotics (like onions and garlic) are necessary to support the probiotics:

http://articles.mercola.com/sites/artic ... NLNew_MV_1

Dr. Oz mentioned probiotics and prebiotics, which nourish probiotics, on his program today. Prebiotics include bananas, whole grains, honey, as well as onions and garlic; listed on page 2:

http://www.doctoroz.com/videos/fact-sheet-probiotics

[euphoniaa]

Euphoniaa, pneumonias can be caused by other pathogens than bacterial ones: viral, but aso fungal or parasites.

Chlamydia pneumoniae can be tested for after you have started an antibiotic which works agaist it: I wasn't tested until I had been taking doxycycloine for three weeks: The test looks for antibodies, not the thing itself.

I hope that they don't find any cancer!

Sarah

Sorry I haven't responded to the most recent posts until now. I've been busy & a little overwhelmed with life in general (work sucks this month) and I really didn't have much to add anyway. Thanks for all of your replies, though!

Sarah, I know they did test me for fungal pathogens. There were pages & pages of results. And I may someday manage to get tested for Chlamydia pneumonia, too. There's just too much going on right now to remember to ask about it.

Lyndacarol, thanks for the info & links. That's the type of info I've been looking for, but so far no one's giving me specifics about how much of what and when. I know probiotics are good and now I know prebiotics are good. But I had to figure out my routine with them on my own.

I had already bought about $100 worth of various probiotic caps, but as the meds increased I had a bad couple of days. As soon as I switched to the smaller dose (3 billion bac per cap, not 10 bil), used the freshest caps I had, and I spread them out over a 24-hour period, the digestive problems magically disappeared! And you will be interested to know that the ONLY 2 days I had diarrhea over several weeks of antibiotics were the 2 days I ate what was, for me, an atypically large amount of sugar. Verrrry interesting...

Although I don't avoid sugar altogether, I don't eat that much of it. I made the BIG mistake of indulging in a few little chocolate goodies at an office birthday party (an All Chocolate Party), and it was an absolute disaster to my system. Holy crap! (Literally.)

So anyway, I'm done with those antibiotics and still in the midst of doctors & scans, with a CT of my lungs in the morning and more appointments next week. Antibiotics finally stopped the coughing, but I'm still not noticing much else from them.

Good health, good lungs, good thoughts, & good moods to all.

[jimmy6]

Hi My name is Patricia and i have 2pms since 1989. My carer is writing this. I have been in wheelchair for 5years. Started antibiotic treatment as recommended by Dr David Wheldon 25 days ago. First slurring stop, numbness in legs almost gone,toes and foot moved slightly and can raise both arms above head. Will keep posted