The 12th Invest in ME Conference, Part 1
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Doing well on azythromycin

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by pattismith, Jul 17, 2017.

  1. pattismith

    pattismith Senior Member

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    Azythro was tested for CFS in a 2006 trial with some benefits on 58% of patients (although no one was totally cured with a 6 weeks pulse treatment)

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1562448/

    I was not aware of this when I started to take Aythromycin 500mg/day for a bad bronchitis.

    I was not even aware that I may be ill with CFS.... I was still thinking my problem was rheumatologic, because it was very similar to Ankylosing Spondylarthritis or Spondylarthropathy for 15 years (had other symptoms for more than 30 years)...But my doctors were thinking another way: I didn't have the serologic/auto-antibodies profile expected in these kind of disease, and no radiographic evidence of it.

    So I was half dead with pain and fatigue in december, and that bronchitis was the ice on the cake when I started to take that drug to fight it.
    After 10 days, my joints/back pains were totally gone (I would say they were gone from day 1!), then I stopped azythro, and the pains were back 10 days later.

    I then looked which bacteria could have been targeted by this antibiotic, and found many could be involved, from Lyme (negative for me) to Chlamydia, Mycoplasma, Yersinia (all positive for me), and many others!

    I decided that I would follow the kind of protocol used for these intracellular bacteria, and kept the treatment for 4 months.
    I was taking tablets with food, and was doing welll, but soon I started to suffer from muscle pains (burning) and fasciculations/contractions, increased tiredness, and so had to stop.

    Then I had the feeling I had find a key to my disease but that I didn't know enough about it to use it properly.
    I had to know more, and to investigate more.
    At this time I started to investigate my blood lactates and to visit the phoenixrising forum that is a wonderful place for those who need to understand what is hapening and to find all the keys to escape from the trap we are in.

    I discover that my blood lactates were high after a meal, because I was suffering from abdominal postprandial vascular compression (thank you so much @kangaSue )

    Then my joints pains came back again two days ago, after one and a half month after I stopped Azythro...
    So I decided to start it again, 250 mg with a meal two times a day (12h00 and 18h30)
    ...All the side effects were immediatly back again, muscle pains and increased fatigue/brain fog...

    But this time, I explored my blood lactates, and this told me that Azithro makes it to raise (with a pick one hour after), and that because of my post-prandial hyperlactatemia, it was a very big mistake to take the tablet with a meal (in my case).

    Today I took azythro with only a glass of water at 14h00 and 20h00, and wait 2 hours after taking it that my lactates lower again before I could eat anything.

    To be sure that I will not suffer from my post prandial compression, I ate only hydrolyzed amino-acid mixed with other nutritives powders and water during the whole day.
    It worked! no muscle pain, no fatigue, I was ok during my whole day, and it was a hard day at work for me, so I am really happy !!

    My lactates went to a pick of 3.6 mmmol/l at 15h00, and were beyond 2 mmol/l all the day,
    but I had no more than half an hour of brain fog, and little discomfort.
    Okay it's only a good day in a long time, but I wanted to share this victory with you, I wish many good days will follow, for me and for all the members as well.
     
    Last edited: Jul 18, 2017
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  2. AdamS

    AdamS Senior Member

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    Interesting, glad to hear of your small victory! I also noticed some temporary benefit when I took Azithro a few months ago.

    From the study:

    I think this kind of sums up why it works. I have to say that the side effects were pretty bad for me initially (nausea and stomach pain) but eventually wore off after an hour or so.
     
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  3. pattismith

    pattismith Senior Member

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    Adam, did you try to take half dose twice a day to reduce this side effect?
     
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  4. kangaSue

    kangaSue Senior Member

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    @pattismith Some people with CFS have the same issue as those with Short Bowel Syndrome in that they ferment carbohydrates to make D-lactate, have you considered that as a source of brain fog and/or had a blood test done before to see if it is an issue for you?
     
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  5. AdamS

    AdamS Senior Member

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    I didn't actually, good idea!
     
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  6. pattismith

    pattismith Senior Member

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    A great day again, no morning pain, no muscle pain, no dizziness, no brain fog, no heavy legs and harms.
    I took my third day on Azythro, at 13h30 and 19h00, with a glass of water, no food until 2 hours after the azythro, and it worked again. I worked all day long standing, and then after worked in the house until 23h00 (so much things to do that were delayed for so long).
    Monitoring blood lactates showed a level between 1.5 (early morning) and 3.3 mmol/l (1 hour after azythro), but the peaks were not associated with any discomfort, very strange!

    in fact, blood Lactates are a biomarker of both cell metabolism and oxygenation/irrigation of tissues and organs, so our high lactates can differ of origin from one CFS to another, and even one CFS can have both issues with lactates peaks from Anoxia (vascular problems) and metabolic, this is why it's always difficult to understand the underlying causes of our problems...
     
  7. ljimbo423

    ljimbo423 Senior Member

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    Hi @pattismith - Bacteria in the gut also produce lactate, as KangaSue suggests above. Could this be why your lactate levels are high after a meal? The bacteria feed on the food and create higher levels of lactate and the azithromycin is killing off the bacteria in the gut?

    Jim
     
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  8. pattismith

    pattismith Senior Member

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    @ljimbo423 , @kangaSue ,

    my analyzer only tests my L-Lactates, so I cannot check if lactates are coming from my gut microflora or other.

    But while I monitor my L Lactates for 8 weeks now, I noticed that whatever I eat my lactates raise about hour after eating, with a link between the bulk of food/water during the meal rather than composition, and a link between standing or lying down after eating.
    If Lactates were produced by gut microflora, I suppose that
    -drinking water with a meal would not raise more lactates, which is the case
    -eating a no carb/sugar diet would prevent my lactates to raise, which doesn't
    -walking a slow walk after eating rather than lying down would not change my lactate peak, although it really does a difference (lactates goes higher if I stay supine after eating)

    I even tryed to eat a green salad + oil + drinking 500 ml than lying supine, and my Lactates raised from 1.9 mmol/l to a peak at 3.4 mmol/l at 75 min!

    But this doesn't mean that I have no gut microflora issue, in fact it may be that my joint/vertebral pains have their origin in my gut and that azythro is working on it.

    Our disease is complexe and the more years it lasts (35 years for me), the more complexe it becomes, so in my case gut flora is involved as well as chronic infections could be (both bacterial and viral) and vascular problems for sure.

    My feeling is that the vascular problem was already here when I was a teen, so it may have come first and be a start for all the other problems that came after.
    Before teenage, I was a very thin girl with pronouced lordosis, both are predisposing factors for some abdominal vascular compression. I was eating very little and my brain was functioning.
    When I reach early teenage, I started to have more appetite and to have problems with eating (feeling bad after eating), then I was given contraceptive pills by a doctor (high hormon doses), which raised my appetite so much that I started eating much more and feeling worst and worst. It took me 10 years to stop this bad pills...But then the bad road was taken, the gut microflora was altered, and the back pains, stiffness, joints pains had already begun...
     
    Last edited: Jul 19, 2017
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  9. kangaSue

    kangaSue Senior Member

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    Test for D-lactate is a specialised blood test only.

    Lactic acid bacteria in our gut produce both L-lactate and D-lactate from carbohydrate fermentation and some probiotics can add to D-lactate production and my understanding is that D-lactate bacteria are difficult to displace once an overgrowth situation occurs.
    https://fixyourgut.com/why-supplementing-with-probiotics-may-make-you-ill-part-4-d-lactate/
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3723183/

    A lesser known cause of elevated D-lactate levels is intestinal ischemia, something which can occur with the abdominal vascular compressions syndromes of SMAS and MALS. They can cause Chronic Mesenteric Ischemia which can flare to episodes of Acute Mesenteric Ischemia.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3602491/
     
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  10. pattismith

    pattismith Senior Member

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    I agree D Lactates dosage would be interesting, specially when I observe L Lactates peak to see if there is any correlation.

    I have already stopped any yoghurt when I realized that I had lactates peaks!

    On the other hand, Lactates from the gut microbiome is produced by the colonic flora, and according to what I've read, the food doesn't reach the colonic area before about 200 min (more than 3 hours after the intake) whereas my lactate peak is 1 hour after the food intake and decreases at 2 hours postprandial, when the food hasn't yet reached the colon...so it doesn't seem to correlate with this hypothesis....

    I will seee if I can do a D Lactate analysis to compare with my L Lactate curve, I don't know if it can be done easily!

    http://www.vivo.colostate.edu/hbooks/pathphys/digestion/basics/transit.html
     
  11. kangaSue

    kangaSue Senior Member

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    Your reference is in regard to transit times for healthy people with normal stomach emptying responses. If you have delayed emptying, food is constantly in the pipeline.
     
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  12. Horizon

    Horizon Senior Member

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    Patti did a CFS dr prescribe this? How long did they put you on for?
     
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  13. pattismith

    pattismith Senior Member

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    I don't Know if CFS doctors prescribe it, but some doctors that think we have to deal with persistant intracellular bacteriologic infections (Lyme doctors as an example) may do it.
     
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  14. pattismith

    pattismith Senior Member

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    After some more investigations, I think that my high blood lactates induced by Azythromycin/Doxicycline had several possible mechanisms:

    -Direct inhibition on mitochondrias
    -Killing the Prevotellas in the gut (the bacterias known to secrete Thiamine, which deficiency leads to Lactic acidosis)
    -Selecting Lactic acid bacteria in the gut (the bacterias known to secrete Lactic acid)

    It seems that the best supplements that helped me to recover from the side effects I had from my Antibiotics seemed to be:

    -amino acids (maybe)
    -thiamine injections (more probably)

    It may be that enterotype 1 or 3 (both with low Prevotella) may be more at risk for Thiamine deficiency or Folates deficiency

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4528021/
    https://www.researchgate.net/publication/51066403_Enterotypes_of_the_human_gut_microbiome
    https://books.google.fr/books?id=49kLK--eumEC&pg=PA256&lpg=PA256&dq=azithromycin thiamine&source=bl&ots=gme9qqvBbl&sig=_oqdmjY96w_RmK3j2zL2NxU4Hk4&hl=fr&sa=X&ved=0ahUKEwjUr8Krkt_VAhUOYVAKHeRFAVAQ6AEITTAF#v=onepage&q=azithromycin thiamine&f=false
     
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  15. ljimbo423

    ljimbo423 Senior Member

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    Hi Patti- Thiamine gives me a big energy boost but also causes anxiety. So I am trying to slowly add it into my supplement regimen. Could you tell me the amino acids that helped you and about how much you took of them daily?

    This is something I am looking into. Chris Armstrong, from the symposium that just ended a few days ago said, it's probably best to use amino acids to go with the way the mito. are already using them in cfs.

    Jim
     
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  16. pattismith

    pattismith Senior Member

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    Hi Jim,

    I take a bunch of other supplements as well that could have been co-helpful (low dose lithium, B12 inj, carnitine, lipoic acid, Biotine, Niacinamide, Q10, iodine, Mg, vit D, Mg, Potassium, selenium, and some others that were mentionned in the Suramin alternative thread, etc), but I really saw the difference when started high dose Thiamine and Dymatize 100.

    I know Thiamine were effective because while monitoring my blood lactate, I could see the improvement, and Thiamine is known to lower the blood lactates. Furthermore, my muscle symptoms (weakness, contractions, fasciculations) were consistent with a thiamine defficiency. It's a pity I have not monitored my thiamine blood level before/after!

    For the whey isolate, there is a big red spoon inside the box, I started with 2 or 3 spoons a day, but my blood phosphore increased a bit so I have decreased the dose now.
     
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  17. Jesse2233

    Jesse2233 Senior Member

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    @pattismith how long were you on azythromycin for?
     
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  18. Learner1

    Learner1 Professional Patient

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    I've had chlamydia pneumoniae for awhile. Frustrating bug. The latest info shows a combination of azithromycin or doxycycline AND rifampin is most effective.

    I was on oral versions of both last winter, and it came roaring back when I stopped, after messing up my gut. My doctor got me approved for IV antibiotics and we're rotating doxycycline with azithro and then will do rifampin. I'm also doing hyperbaric oxygen which it doesn't like and have reduced my iron, which seems to feed it.

    Hoping it works, but its not easy to get rid of...
     
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  19. msf

    msf Senior Member

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    Hmm, raised lactate after taking Azithromycin is actually the opposite of what I suggested in my blog. Higher lactates one hour after Azithromycin seems unlikely to be caused by the effect of Azithromycin on things in the blood or body though, as that seems a bit fast for a significant proportion of it to be absorbed (I have no info on this, so perhaps I am wrong about that).
     
    Last edited: Aug 18, 2017
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  20. pattismith

    pattismith Senior Member

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    Hi jesse, I had a pulse regimen of Azithromycin (3-4 days a week) + Doxycycline every days for 4 months from february to may 2017

    yes I know, it's a bit strange, but azithromycin seems to be very quickly absorbed (the peak in the blood is known to be at 2-3 hours after intake), so it is possible that azithromycin put a pressure on mitochondrias as soon as it arrives in the blood, and then the blood lactate control system happens to start out and to regulate the lactate peak.

    I have done 167 blood lactate controls on me since I started the monitoring two months ago (just after my 4 months antibiotics regimen), so I'm still under investigations and hypothesis are not closed, you can add yours!

    The first curve I made was my post acetyl Salicylic acid lactate curve, a known mitochondria toxic drug that is partly absorbed by the stomach. I took One Alkaseltzer (324 mgr acetyl salicylate) . At this dose, we shouldn't see any toxicity, but the test clearly showed that my blood lactates regulation systems were not very good:

    18.05.17 fasting Blood Lactates at 6h30 = 1,7 mmol/l ...intake 1 alkaseltzer (no food)
    7h30 BL = 2,9 (alka+1h)
    8h30 BL= 3,1 ( alka+2h00 )
    9h30 BL = 3,3 (alka+3h00 )
    10h30 BL = 2,2 (alka+4h00 )
    12h00 BL = 1,8 (alka+4h30 )

    The few tests I've done with azithro (without any food intake) said that my lactates has a peak at 1 hour, and then goes low at 1h30


    16.07.17

    18h10 BL= 2,7 zithromax 250 mg + glass of water then laying
    19h14 BL=3,2
    19h44 BL=1,9
    17.07.17
    14h00 BL= 2,7 azythro 250 mg +glass of water
    15h00 BL = 3,6
    20h15 BL = 2,4 azythro 250 mg + glass of water
    22h12 BL = 2,1
    18.07.17
    13h30 BL = 1,9 azythro + water
    14h40 BL = 2,7
    19h00 BL = 3 azythro + water
    20h00 BL = 3,3
    21h00 BL = 2,3
     

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