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Antibiotics with KDM

Aileen

Senior Member
Messages
615
Location
Canada
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...?
No!!! :jaw-drop: I didn't see that coming! Saved you from looking up their phone number. I guess we know the clinic is legit. :)

Did he say anything about treating other kinds of bacterial infections? Tests seem to indicated that it is not Lyme, but I do seem to have a nasty infection. I can smell the ammonia and also something nasty that I am assuming, perhaps incorrectly, is sulphur.

I see my doctor in a little over a week. We have ruled out all the usual viral suspects but haven't really looked at bacteria. I'm in Ontario and my doctor doesn't seem to be able to handle anything out of the ordinary. I need to be tested for as many bacterial strains as possible but I doubt it will be anything more than very basic stuff like candida and strep.

Would the clinic in Reno do any sort of testing to see if they have a phage that can help? They must have some way of figuring out who to take on as patients and which phage to give you. I haven't looked into this much, but it is my understanding that there isn't a "broad-spectrum" type they can give you like an antibiotic. They need the name of the culprit in order to help you.

This resistant starch is great info but I am getting rather confused and overwhelmed. I need to figure out a pre- and probiotic plan, but am really interested in this bacteriophage stuff. Somehow it just feels right -- gut feeling... :rolleyes: I think it's time I get to bed.

Sorry they don't have anything for the Lyme.
 

Aileen

Senior Member
Messages
615
Location
Canada
Yes I do have CFS, actually the original diagnosis was Post Viral Fatigue Syndrome (PVFS) way back in the late 80's, early 90's when I was diagnosed. We've gone through so many name changes I have a hard time remembering them all. Been housebound since 1987. MCS reared it's ugly head a couple years later.

I haven't been to a CFS specialist like Klimas or Peterson. I was lucky enough to get in to a family doctor in Toronto who had it himself. He was one of the authors of the CCC. Sadly he died of brain cancer and I have pretty much been my own doctor ever since. I do have a family physician who is relatively co-operative at present, but it is up to me to come up with the ideas... :nerd:

A change of meds recently has made it clear that there is a huge infection problem somewhere. Don't know whether it is altered gut flora, traditional-type bacterial or fungal infection or some combination thereof. It became very obvious that the mystery microbe(s) is driving the MCS sensitivities to odours and likely foods.

Now I just have to find the &^%$ thing!! :aghhh: I'm assuming that the tests that are covered/available in Ont will not likely identify it and therefore I won't get antibiotics/antifungals. Trying to figure out what to do. Waiting on uBiome results ...

Researching antibiotics, pre- and probiotics and phage therapy at the moment. Very confused and overwhelmed by it all.

Are you doing any pre- and/or probiotics along with the antibiotics you are getting?
 
Hi I haven't been on here for ages. Been off tx'ing lyme. I have Cpn and Yersinia too. From what I understand KDM doesn't have v good testing for lyme, bartonella and babesia. But Yersinia , I think right in saying , is tick transmitted.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi I haven't been on here for ages. Been off tx'ing lyme. I have Cpn and Yersinia too. From what I understand KDM doesn't have v good testing for lyme, bartonella and babesia. But Yersinia , I think right in saying , is tick transmitted.

would you mind elaborating on why you think KDM's testing is not good?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi I haven't been on here for ages. Been off tx'ing lyme. I have Cpn and Yersinia too. From what I understand KDM doesn't have v good testing for lyme, bartonella and babesia. But Yersinia , I think right in saying , is tick transmitted.

He didn't in the past (no one did!) but my experience recently is that he is using the most updated, reliable tests. He recently found Bartonella in me with newer tests.

Best wishes,
Sushi
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
Second that, KDM's test are very very thorough and the labs he uses are top notch.
Specific for borrelia and co-infections:
Immunoblot
Elispot LTT (lymphocyte transformation test)
PCR
Regular IgG / IgM serology
CD57

Besides that he does a lot of immunological testing that may indicate an underlying infection like lyme.
 

Daffodil

Senior Member
Messages
5,875
Yes I do have CFS, actually the original diagnosis was Post Viral Fatigue Syndrome (PVFS) way back in the late 80's, early 90's when I was diagnosed. We've gone through so many name changes I have a hard time remembering them all. Been housebound since 1987. MCS reared it's ugly head a couple years later.

I haven't been to a CFS specialist like Klimas or Peterson. I was lucky enough to get in to a family doctor in Toronto who had it himself. He was one of the authors of the CCC. Sadly he died of brain cancer and I have pretty much been my own doctor ever since. I do have a family physician who is relatively co-operative at present, but it is up to me to come up with the ideas... :nerd:

A change of meds recently has made it clear that there is a huge infection problem somewhere. Don't know whether it is altered gut flora, traditional-type bacterial or fungal infection or some combination thereof. It became very obvious that the mystery microbe(s) is driving the MCS sensitivities to odours and likely foods.

Now I just have to find the &^%$ thing!! :aghhh: I'm assuming that the tests that are covered/available in Ont will not likely identify it and therefore I won't get antibiotics/antifungals. Trying to figure out what to do. Waiting on uBiome results ...

Researching antibiotics, pre- and probiotics and phage therapy at the moment. Very confused and overwhelmed by it all.

Are you doing any pre- and/or probiotics along with the antibiotics you are getting?


I will send you a private message
 

Daffodil

Senior Member
Messages
5,875
I am afraid the Ceftin might not be working as well as the IV Rocephin. I could clearly feel the brain fog lifting with the Rocephin....my IQ, confidence, decision making...everything was getting better...I was still only 30% of the real me, but it was coming back after almost 21 years!

Now, I feel pain in my neck getting worse and fog descending again. I hope to God this is die-off...but I am really worried. I have been on Ceftin for 2 days now.

I have read many stories of people recovering from Lyme (or whatever this is) on Rocephin, only to relapse once off the drug and one certainly can't stay on Rocephin forever, so maybe it would have happened anyway even if I was able to complete the entire course.

I guess I will wait and see if the Ceftin kicks in. I have read good reviews of it on the Lyme message boards....

xoxo
 

Daffodil

Senior Member
Messages
5,875
oh man. my neck cant move and my shoulder is hurting as well as my left upper arm and lymph node in my neck. is this from Ceftin die off or relapse from stopping Rocephin?

How on earth will I pack, clean, move luggage and sit in a cramped airplane seat (which are made for 6 ft people) for several hours like this!? I am flying back from Reno on Tues :(.I don't even have my neck pillow with me.

maybe 2 benzos will at least calm me down lol

one thing I learned from my Reno trip, is that Rocephin will clear my brain fog and totally bring down inflammation in the CNS!
 
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physicsstudent13

Senior Member
Messages
611
Location
US
I hope that you will fight the diseases with research!
I had neck pain too and better energy/clarity maybe. I think the rocephin+clarithromycin and/or metronidazole seemed to work. I'm looking at injecting ampicillin now.
can a 2mm calcified Granuloma on chest xray be caused by Lyme's and Bartonella?? I'm also getting a lot of knee pain and neck swelling

I'm also trying some other stuff too
 
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justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
update: on celebrex, ceftin, clarithromycin, and supplements. 2 months into this particular antibiotic combo. feeling better. brain better....long long long way to go, but experiencing real hope.
So very happy to hear this Daff, after all the years of reading your agonising posts I am literally jumping for joy for you. It gives me hope that KDM does know what he is talking about. Still no treatment for me yet as body still reacting with allergic type reactions to everything, but at least I live in hope now after reading new from Valentjin yesterday and now this from you.
 

Daffodil

Senior Member
Messages
5,875
So very happy to hear this Daff, after all the years of reading your agonising posts I am literally jumping for joy for you. It gives me hope that KDM does know what he is talking about. Still no treatment for me yet as body still reacting with allergic type reactions to everything, but at least I live in hope now after reading new from Valentjin yesterday and now this from you.
thanks justy. I really think the IVIG might be the key for you. I sure hope you can start that soon.

xoxo
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
thanks justy. I really think the IVIG might be the key for you. I sure hope you can start that soon.

xoxo
Appt with clinic to discuss it on 25th Feb. then hopefully have apt with KDM in March (if I can physically get there this time)
 

Daffodil

Senior Member
Messages
5,875
Appt with clinic to discuss it on 25th Feb. then hopefully have apt with KDM in March (if I can physically get there this time)
hi justy:) I will hopefully be seeing him in march as well..perhaps we can meet in the waiting room. I am going there to bring immunoglobulin back with me. I cannot do it IV here so I will do it sub-Q.
xoxoxo
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
hi justy:) I will hopefully be seeing him in march as well..perhaps we can meet in the waiting room. I am going there to bring immunoglobulin back with me. I cannot do it IV here so I will do it sub-Q.
xoxoxo
Wow that's a long way to go to pick up stuff - will you be having any treatments while you are there? i'm going to be there on the 17th of March.
 

Daffodil

Senior Member
Messages
5,875
Wow that's a long way to go to pick up stuff - will you be having any treatments while you are there? i'm going to be there on the 17th of March.
Hi Justy. Right now, my appt is March 5th but I suspect I will have to postpone it a little because I am waiting for some airmiles. I will not be having treatments there, but I will be having tests. The last I spoke to KDM, I was doing poorly and he recommended some new testing.

There are some tests I would like to request again, such as sCD14 and mucosal IgA. I would also like to maybe get the LTT ELISPOT for Borrelia again.

I would go to Reno but to get the immunoglobulin, I have to go to Belgium. Buying it there will save me quite a bit of money as opposed to buying it in the USA. It would be cheap in Canada but no doctor would let me have it here. I am hoping that if I take a higher dose for a few months (instead of the micro dose I took before), it might really do something good.

This is really like a roller coaster...one week hopeless, the next, hopeful.
xoxo
 
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justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Ive just changed my ppointment to the end of March as I need to take my daughter to see him as well now. I will be having an echo and hopefully further Borrelia testing while there.