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Antibiotics with KDM

Daffodil

Senior Member
Messages
5,875
hi all. so I have been on various antibiotics under KDM since June of 2013 (at least I think this was the date).

I did experience some improvement, although it did not last.

After about 8 months on the antibiotics, I had some bloodwork.

He seems to change what he tests a lot, as well as the way he does the tests, so there are only a few to compare.

Before the antibiotics, my Prostaglandine E2 was 9.33 (normal range: 0.10 - 2.81). Now, it is 1.72. The new test says "ratio to normal median" and the old test does not, so I am not even sure I can compare these.

I cannot even compare the cytokines because the first one says, "mRNA" and the new one says "serum". I do not know if these are comparable.

Hmmm it looks like my IL-10 and IL-6 are higher...that's not good....

And now it appears I have Yersinia, which he did not test for before. The only Yersinia species I am familiar with is the bubonic plague but I guess that is not the same one here lol

It says I have positive IgG for Chlamydia Pneuomiae but this has always been negative in all other testing in the USA. In fact, I remember one doctor commenting that since I have no antibodies, I had better get vaccinated for this and I think I did so in 2007. I am in the process of tracking these details down.

I could have compared my CD57 counts but it seems that the test was "not executable" this time.

Oh well, not much info in this thread. Sorry about that lol. I welcome any comments.

(I am in Reno now getting IV antibiotics). I have experienced no improvement after 7 weeks but KDM says the improvement will not come until well after I am finished this treatment.

Thanks for reading
xox
 
Messages
26
Location
UK
@Daffodil - I have been on an oral antibiotic protocol for 3 years for Chlamydia Pneumoniae. I've been ill for 25 years with ME/CFS and lots of other neurological symptoms. It's very usual to have negative results in testing, because the bacteria 'hides' inside cells and so antibodies are not produced. There is more possibility of a positive test once antibiotics have been taken for a while. Also, many if us on the cpnhelp.org site find that we do seem to improve initially, but then seem to get worse when more killing of bacteria starts to take place. It can be a long, slow process, but well worthwhile.
 

Daffodil

Senior Member
Messages
5,875
celeste....I did not even think of that; thank you.

jon....my understanding is that KDM changes to herbals after a certain amount of time on the oral abx....but perhaps I will ask him if I can add herbals when I see him....

I have been sick almost 21 years.
:-/
 

xrunner

Senior Member
Messages
843
Location
Surrey
@Daffodil
Hi,
Yes it was true for me, I could not tell for sure whether a course of abx was actually helping until after I had finished. It was only shortly afterwards that the improvements would come through. Most abx actually didn't help but eventually I would find some that would work well.
Are you tracking ab titres over time? with treatment they should improve. Is your Dr suggesting anything for biofilm? Have you seen any improvement in your Nagalase? If your tests show multiple pathogens, you could ask for an abx protocol that, at the same time, can cover as many as possible. Best wishes.
 

Aileen

Senior Member
Messages
615
Location
Canada
hi all. so I have been on various antibiotics under KDM since June of 2013 (at least I think this was the date).

It says I have positive IgG for Chlamydia Pneuomiae but this has always been negative in all other testing in the USA. In fact, I remember one doctor commenting that since I have no antibodies, I had better get vaccinated for this and I think I did so in 2007. I am in the process of tracking these details down.
@Daffodil If you got vaccinated for it, then you should now have IgG antibodies due to the vaccine. The idea of a vaccine is to stimulate your body to produce antibodies so that if you are exposed, your body knows how to fight it but without making you sick.
 

Daffodil

Senior Member
Messages
5,875
hi all. just wanted to report that the rocpehin is making me so tired - 10 times more than usual. either I am doing the infusion, or sleeping. its crazy. I can no longer cook and am not sure how I will even get food...I have 5 more weeks of this. the doctor here says he doesn't see this with rocephin so I am wondering if anyone else out there has heard of this. my chest also hurts a little but that is not unusual for me when I am extra tired.

thanks
xox
 

snowathlete

Senior Member
Messages
5,374
Location
UK
hi all. just wanted to report that the rocpehin is making me so tired - 10 times more than usual. either I am doing the infusion, or sleeping. its crazy. I can no longer cook and am not sure how I will even get food...I have 5 more weeks of this. the doctor here says he doesn't see this with rocephin so I am wondering if anyone else out there has heard of this. my chest also hurts a little but that is not unusual for me when I am extra tired.

thanks
xox
Sorry to hear it is so hard. I've no experience to offer unfortunately but hope it turns out to be a good sign.
 
Messages
54
Location
rome italy
Hi daffodil!
I am also on rocephine in belgium. Well, i just finished my first 6weeks and tomorrow i will start with azitromicina.
I am also very tired, much more than before i started treatment. I feel sleepy, drugged, my eyes hurt, I see double and blurry and I rest a lot.
I take the infusion in the mornings and usually I spend my afternoons in bed. That is a big change for me because I have always been able to function more or less with this illness.
I am meeting many people at himmunitas and many of them say that they sleep a lot, so you are not the only one ;)
Nice to know that KDM told you that you would feel the improvements after finishing the IV! It gives hope to keep fighting.
Were you on azitromicina IV for 6 weeks prior to rocephine? How did you tolerate that?
The best of luch to you! Hope you can soon let us know about some improvements ;)
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
Sorry to hear your first week of rocephin didn't go so well. It had the exact opposite effect on me, i was feeling more energetic, had less inflammation and even noticed an improvement in memory. Now 3 weeks into IV azithromycin treatment all those benefits are gone and it messed up my GI tract so my case is probably more neurolyme than anything else.
I was really hoping rocephin would make you feel a bit better as you already had a bad time on azithromycin.
 

Daffodil

Senior Member
Messages
5,875
hi all. i appear to be in a very unfortunate situation. i am in reno receiving IV antibiotics. I did 6 weeks of azithromycin and it was difficult and i did get diarrhea for a while, but it eventually resolved itself.

then, i began rocephin. i actually think it might be helping a little.....but the problem is, i cannot tolerate it! after 1 1/2 weeks of it, i developed severe diarrhea, which kept worsening, until one day, in which i had it 16 times (in the middle of the night, too). this scared me a lot.

online, it clearly states that rocpehin can cause watery, severe, and potentially dangerous diarrhea....i guess i am the rare case where this happens :(

i am taking a small dose of actigall and that can cause diarrhea too, but i am sure its the rocephin just because the diarrhea is so severe..it has to be antibiotic-related right?

ugh. i am also on malic acid to try and protect my gall bladder...but surely this much diarrhea cannot be caused by that?

i am also starting to experience some shooting pains in my abdomen, on the left side...not a right sided gall bladder pain.

i may have to leave Reno early and lose money on rent, etc etc.

:-/
 

snowathlete

Senior Member
Messages
5,374
Location
UK
hi all. i appear to be in a very unfortunate situation. i am in reno receiving IV antibiotics. I did 6 weeks of azithromycin and it was difficult and i did get diarrhea for a while, but it eventually resolved itself.

then, i began rocephin. i actually think it might be helping a little.....but the problem is, i cannot tolerate it! after 1 1/2 weeks of it, i developed severe diarrhea, which kept worsening, until one day, in which i had it 16 times (in the middle of the night, too). this scared me a lot.

online, it clearly states that rocpehin can cause watery, severe, and potentially dangerous diarrhea....i guess i am the rare case where this happens :(

i am taking a small dose of actigall and that can cause diarrhea too, but i am sure its the rocephin just because the diarrhea is so severe..it has to be antibiotic-related right?

ugh. i am also on malic acid to try and protect my gall bladder...but surely this much diarrhea cannot be caused by that?

i am also starting to experience some shooting pains in my abdomen, on the left side...not a right sided gall bladder pain.

i may have to leave Reno early and lose money on rent, etc etc.

:-/
You poor thing. I'm so sorry you are having this experience. Even when my ulcerative colitis was at Its worse I was not having that many trips to the loo.
If I were in your shoes I would stop that drug. It's not a normal reaction and those side effects can be serious. You dont want to give yourself new problems to contend with and having these side effects will not put yourbody in a good place to fight infection. You tried a lower dose and same problem so maybe now ask KDM to give you something else instead. Have acouple of days off if needs be. might be a goid thing, even though i understand youre probably keen to get on wirh treatment. There must be alternative drugs you can get prescribed when you see KDM.
Thinking of you and hope you get a good solution!
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
@Daffodil, so sorry to hear you are having a difficult time on rocephin.

If i were you i'd to the following:
- Stop ALL the supplements / vitamins and continue with rocephin only, so that means also stopping actigall and especially malic acid. the latter one gave me diarrhea and intestinal inflammation in the past. That's the only way to know for sure if it's caused by rocephin.
- On your 3 days off the rocephin double the dosage probiotics assuming you are on VSL #3 and have already been using it for a while. (Starting up probiotics can cause diarrhea....)
- Go onto a very bland diet, excluding everything that might irritate your G.I. tract. No undigestible fibers, no caffeine, no alcohol. Maybe you can try something like the GAPS intro phase to ease the inflammation
- Ask for a basic stool culture as soon as possible, best a consecutive 3-day stool culture w. c.diff. and blood
- Rocephin is primarily cleared by the gallbladder so if you are experiencing liver pains maybe you should do a lower and upper abdominal echo to see if something is wrong. It doesn't show the details but it's usually highly affordable.

Doesn't your insurance cover emergency situations when abroad?

All the best daff.
 

Aileen

Senior Member
Messages
615
Location
Canada
@Daffodil Over on the Resistant Starch thread (post #60) Hip mentioned bacteriophage therapy and included a link to a clinic in Georgia (the former Soviet republic, not the US state!) I spent quite a bit of time looking around the site and found they have a couple clinics affiliated with them.

Checked out those sites also. One is a Naturopathic clinic in Toronto, but the website mentions nothing about phage therapy. I have my doubts about that one. But, another clinic's website focuses on bacteriophage therapy. Guess where it is ... Reno! It's called High Sierra Holistic

I would be interested to know what KDM's views of this type of treatment are. Also, since you are in Reno, perhaps you could call and ask a few questions. Maybe they could work with KDM by providing that extra therapy. I have no idea how they decide who they can help. Must have some sort of testing.

Just a thought. :) Has anyone had or looked into bacteriophage therapy?
 

Daffodil

Senior Member
Messages
5,875
hi thinktank! those are great suggestions, thank you. i will post more tomorrow as i am very exhausted right now.

aileen..the doctor that is overseeing my infusions at the WPI talked to me about bacteriaphage therapy the other day, interestingly enough. it was in relation to a patient with resistant TB i think..i cannot remember the details.

i will do some reading and look up high sierra holistic....thank you!

i wanted to report that my CD57, which was 48 (normal: 60-360) in march of 2013 when i saw KDM in belgium, is now 75!
 

Daffodil

Senior Member
Messages
5,875
just wanted to add that the cd57 tests were done at different labs so the doctor here in reno thinks I might not be able to compare them as if they were done at the same lab....but they both have the same normal ranges....
 

Daffodil

Senior Member
Messages
5,875
@Daffodil Over on the Resistant Starch thread (post #60) Hip mentioned bacteriophage therapy and included a link to a clinic in Georgia (the former Soviet republic, not the US state!) I spent quite a bit of time looking around the site and found they have a couple clinics affiliated with them.

Checked out those sites also. One is a Naturopathic clinic in Toronto, but the website mentions nothing about phage therapy. I have my doubts about that one. But, another clinic's website focuses on bacteriophage therapy. Guess where it is ... Reno! It's called High Sierra Holistic

I would be interested to know what KDM's views of this type of treatment are. Also, since you are in Reno, perhaps you could call and ask a few questions. Maybe they could work with KDM by providing that extra therapy. I have no idea how they decide who they can help. Must have some sort of testing.

Just a thought. :) Has anyone had or looked into bacteriophage therapy?

Aileen..so it turns out the doctor who is overseeing my infusion is the very same doctor from high sierra holistic! I talked to him about bacteriophage for lyme but he says the bacteriophage for borrela is not fit for human use. something about it inserting itself into the borrelia DNA and making it unsafe...?