Boule de feu
Senior Member
- Messages
- 1,118
- Location
- Ottawa, Canada
Did you get better as you were treating the mycoplasma?
Mycoplasma/milion dollar question!
- Thread starter ABCFS12
- Start date
Did you get better as you were treating the mycoplasma?
Francelle
Senior Member
- Messages
- 444
- Location
- Victoria, Australia
I know, Boule de feu, that you directed your question to Lalu but to put in my twopenny worth:
On certain levels eliminating the Myco. Pn. helped some things for me like eliminating the intractable cough which lasted for twenty months with two hospitalisations, as well as, allowed some improvement in energy and fatigue levels. However unfortunately I would say that I still have M.E.
I continue to have widespread neuropathic pain, I get PEM several days per month where I cannot get out of bed (bad at the moment), have major GI dysmotility issues and lots of other stuff like that.
So I think that whatever happens to start this process (infections, injury, goodness knows!!) of M.E., certain damage gets done along the way and is not easily rectified even when a/the contributing factor is removed. I so wish that wasn't the case!
On certain levels eliminating the Myco. Pn. helped some things for me like eliminating the intractable cough which lasted for twenty months with two hospitalisations, as well as, allowed some improvement in energy and fatigue levels. However unfortunately I would say that I still have M.E.
I continue to have widespread neuropathic pain, I get PEM several days per month where I cannot get out of bed (bad at the moment), have major GI dysmotility issues and lots of other stuff like that.
So I think that whatever happens to start this process (infections, injury, goodness knows!!) of M.E., certain damage gets done along the way and is not easily rectified even when a/the contributing factor is removed. I so wish that wasn't the case!
Hi Lala,
I still have Lyme, after all these antibiotics. I still also have the Chlam Pneumonia and Mycoplasma as of the latest test (but that was about 7 weeks ago). The symptoms of those have improved greatly, Maybe they have gone now - I'm not sure when my next test will be. But I can definitely feel Lyme is still there and active, even though the symptoms are considerably reduced by the antibiotics.
The fantastic news is that my little boy, who has also been on a ton of antibiotics for Lyme, got a nnegative result last week - zero Lyme activity. If it is negative again in 6 months time, it means he really is cured. I am trying not to get too excited prematurely, but it feels like a miracle. He already appears to be symptom free, so I honestly think a miracle may have occurred.
Luckily he didn't have any of these pneumonias etc, just Lyme, so maybe that made it easier to cure? Also the fact that he was diagnosed much younger, and before the illness had really inactivated his immune system.
Francelle, it sounds as if these pneumonias attack people who already have suppessed/damaged immune systems, so maybe that is why my son managed not to get infected? The doc said he could very easily have caught these infection from me with all the close mother/baby contact.
I still have Lyme, after all these antibiotics. I still also have the Chlam Pneumonia and Mycoplasma as of the latest test (but that was about 7 weeks ago). The symptoms of those have improved greatly, Maybe they have gone now - I'm not sure when my next test will be. But I can definitely feel Lyme is still there and active, even though the symptoms are considerably reduced by the antibiotics.
The fantastic news is that my little boy, who has also been on a ton of antibiotics for Lyme, got a nnegative result last week - zero Lyme activity. If it is negative again in 6 months time, it means he really is cured. I am trying not to get too excited prematurely, but it feels like a miracle. He already appears to be symptom free, so I honestly think a miracle may have occurred.
Luckily he didn't have any of these pneumonias etc, just Lyme, so maybe that made it easier to cure? Also the fact that he was diagnosed much younger, and before the illness had really inactivated his immune system.
Francelle, it sounds as if these pneumonias attack people who already have suppessed/damaged immune systems, so maybe that is why my son managed not to get infected? The doc said he could very easily have caught these infection from me with all the close mother/baby contact.
Hello Athene,
that is fantastic news with your little boy. I wish you he cured totally. And wish the same for you. How is your fatigue and brainfog?
I wrote to BCA and they sent me their blood test kit. I still did not send my blood back to them as I was finally able to continue with treatment at home, but I will certainly do it after spending all possibilities here.
Thank you for your updates, your experiences are very valuable.
that is fantastic news with your little boy. I wish you he cured totally. And wish the same for you. How is your fatigue and brainfog?
I wrote to BCA and they sent me their blood test kit. I still did not send my blood back to them as I was finally able to continue with treatment at home, but I will certainly do it after spending all possibilities here.
Thank you for your updates, your experiences are very valuable.
Hi Lala,
I'm really glad to hear you could continue being treated at home. I really hope you make good progress - are you feeling any better than before? I remember last time we were talking you were feeling so awful, and at a really low point.
My fatigue is still there. I have settled into a routine where I can be somewhat active in the morning, then sleep 4 hours after lunch, and then sleep 9 hours at night. So, more sleeping than a normal person, and I do very little between whiles, but at least having a proper sleep routine feels as if it is doing me good.
My brain fog has been a lot better for quite a while, I don't get it very often at all now, and when it happens, it is usually milder than it used to be (before starting this treatment, it was nearly all the time, and very bad).
How are you doing on these symptoms?
Hi Francelle,
Have you been tested for any other chroinc infections that could be causing your lasting symptoms?
Do you think they could be long-term after effects of damage caused by Chlam pneumonia? Or do you think they are more likely to be XMRV/some other infection?
I'm really glad to hear you could continue being treated at home. I really hope you make good progress - are you feeling any better than before? I remember last time we were talking you were feeling so awful, and at a really low point.
My fatigue is still there. I have settled into a routine where I can be somewhat active in the morning, then sleep 4 hours after lunch, and then sleep 9 hours at night. So, more sleeping than a normal person, and I do very little between whiles, but at least having a proper sleep routine feels as if it is doing me good.
My brain fog has been a lot better for quite a while, I don't get it very often at all now, and when it happens, it is usually milder than it used to be (before starting this treatment, it was nearly all the time, and very bad).
How are you doing on these symptoms?
Hi Francelle,
Have you been tested for any other chroinc infections that could be causing your lasting symptoms?
Do you think they could be long-term after effects of damage caused by Chlam pneumonia? Or do you think they are more likely to be XMRV/some other infection?
Yes, I am much better now. My fatigue mostly gone and my remaining symptoms were abdominal pain and mental issues, as you know. Depression, irritability, etc. As I investigated at least big part of them is secondary porphyria, who almost everybody gets who had heavy chronic chlamydia pn. infection. This can last even after infection was cured as porphyrins accumulate in the cells long term. Symptoms of porphyria can be depression, irritability, anxiety, abdominal pain and some neurologic issues like tinnitus, light sensitivity, etc., also fatigue and low grade fever. So I started treating porphyria and I am heavy supplementing with B12 now. I also added diatomaceous earth to the mix, that helped with abdominal pain.
Do you treat cystic/cryptic form of these bacteria also? I think it is important point otherwise these bugs start replicating again...
Do you treat cystic/cryptic form of these bacteria also? I think it is important point otherwise these bugs start replicating again...
Hi Lala,
I'm glad to hear you're improving. That is such good news!! :-=))))
Yes, one of the tablets I am taking is for the cystic form. I cannot remember which one - it is an antimalarial drug (a variant of quinine I think). My doc says it is very important to addres that throughout the therapy.
I'm glad to hear you're improving. That is such good news!! :-=))))
Yes, one of the tablets I am taking is for the cystic form. I cannot remember which one - it is an antimalarial drug (a variant of quinine I think). My doc says it is very important to addres that throughout the therapy.
Hopefully one day we will come out of this all, Athene. I will follow your recovery as I feel we are in the similar boats. 
I think your fatigue will improve too, it is only matter of time. Lots of our cells die when we kill these intracellular bugs and we have to wait till we literally regrow again. Some cells like those in nervous systems or immune cells take a little bit longer.
I think your fatigue will improve too, it is only matter of time. Lots of our cells die when we kill these intracellular bugs and we have to wait till we literally regrow again. Some cells like those in nervous systems or immune cells take a little bit longer.Hi,
Yes, the leaflet with doxy says it is best absorbed on an empty stomach, but my doctor says it cases too much stomach irritation if you are taking it long term.
My doctor said the main thing is to avoid taking it with foods rich in calcium, magnesium or iron, as these directly block its absorption.
He said the other helpful thing is to take it, not right after your meal, but about an hour later, when the stomach is just starting to empty but still lined with food.
Yes, the leaflet with doxy says it is best absorbed on an empty stomach, but my doctor says it cases too much stomach irritation if you are taking it long term.
My doctor said the main thing is to avoid taking it with foods rich in calcium, magnesium or iron, as these directly block its absorption.
He said the other helpful thing is to take it, not right after your meal, but about an hour later, when the stomach is just starting to empty but still lined with food.
I don't take it any longer for a number of reasons. I take Minocycline instead which is also a tetracycline like Doxycycline. I take it on an empty stomach, an hour before food. I take it with licorice tea which I found offsets the acidity of the drug and helps with nausea or other discomfort.
Full absorption is critical when you take antibiotics long-term in order to avoid the development of resistant strains.
Full absorption is critical when you take antibiotics long-term in order to avoid the development of resistant strains.
I am taking a break from the doxy after a month. It is just to hard on me. I feel really bad and hopeless about it but I dont feel I have a choice. Is it possible any of these infections have gone after one month tx? I know it takes much longer but I wonder if we are all different?
Well, my doctor was clearly surprised that I still have chlam Pneumonia after a month on minocycline and Azithromycin, so that must mean that most people would be cured after that time. He said Mycoplasma can take longer, but reasonable proportion of patients can also be cured of that in a month.
So we must all be different.
I think that it boils down to how much your own immune system can contribute. My doc said the antibiotics cannot do the whole job by themselves.
By the way, my doc made me take a break after a month of these antibiotics as he said the liver needs a chance to recover. My experience was that taking a break did me lots of good, but that it was for too long. 6 weeks would have been perfect, but I did it for 9 weeks and in the last 3 weeks did some extreme backsliding. I would suggest you wait till your energy levels improve - you will basically feel it when you have got "clean" inside, then immediately go back on. You can have your antibodies tested again while you are on abx, which means you don't have to lose ground while waiting for the blood test to see if you are clear.
I so dearly wish I had done it like that!
So we must all be different.
I think that it boils down to how much your own immune system can contribute. My doc said the antibiotics cannot do the whole job by themselves.
By the way, my doc made me take a break after a month of these antibiotics as he said the liver needs a chance to recover. My experience was that taking a break did me lots of good, but that it was for too long. 6 weeks would have been perfect, but I did it for 9 weeks and in the last 3 weeks did some extreme backsliding. I would suggest you wait till your energy levels improve - you will basically feel it when you have got "clean" inside, then immediately go back on. You can have your antibodies tested again while you are on abx, which means you don't have to lose ground while waiting for the blood test to see if you are clear.
I so dearly wish I had done it like that!
I also found Doxy quite toxic and that's one of the reasons I no longer use it. If it's of any help, I found that 12-15 days on and 5-7 days off works better for me than long courses (but that's me).
The length of treatment is quite subjective. In addition to Athene's comments about the immune system, I would add that addressing a) biofilm and b) cell and tissues absorption are necessary to accelerate recovery.
The length of treatment is quite subjective. In addition to Athene's comments about the immune system, I would add that addressing a) biofilm and b) cell and tissues absorption are necessary to accelerate recovery.
To enhance tissue penetration of abx (or any other med/supplement for that matter) I do two things:
a) anaerobic exercise (weights) to get blood circulating around the body
b) take antibiotics with phos chol
As regards biofilm, I've looked at various protocols and tried various things but not everything has worked for me. I think there's still a lot to be learnt out there in this respect.
I use enzymes and follow some of Dr Klinghardt suggestions. The one that works best for me is Boluoke. I've been testing recently a generic and cheaper form of lumbrokinase, as Boluoke is too expensive. It's too early to say whether it works just the same. The second best was Serrapeptase which is the one some recommend specifically for Mycoplasma but dosage was an issue. I've tried many others like Rechts Regulat, Wobenzym, Nattokinase, Bromelain etc. but they did not work as well for me, although others have had good results.
So I think it's a trial and error thing in some respects. However it's worth looking into because they can make a huge difference, particularly when improvements seem to slow down.
a) anaerobic exercise (weights) to get blood circulating around the body
b) take antibiotics with phos chol
As regards biofilm, I've looked at various protocols and tried various things but not everything has worked for me. I think there's still a lot to be learnt out there in this respect.
I use enzymes and follow some of Dr Klinghardt suggestions. The one that works best for me is Boluoke. I've been testing recently a generic and cheaper form of lumbrokinase, as Boluoke is too expensive. It's too early to say whether it works just the same. The second best was Serrapeptase which is the one some recommend specifically for Mycoplasma but dosage was an issue. I've tried many others like Rechts Regulat, Wobenzym, Nattokinase, Bromelain etc. but they did not work as well for me, although others have had good results.
So I think it's a trial and error thing in some respects. However it's worth looking into because they can make a huge difference, particularly when improvements seem to slow down.
Hi:
I am new here, (am just making my second post tonight), but having myco myself, I'd strongly suggest doing some reading of research and treatment recommendations from Dr. Garth Nicolson.
website is at www.immed.org
The Institute for Molecular Medicine.
I have read his work, and he is one of the leaders in the field. He uses drugs, natural meds/supplements, diet and more.
Also, I don't know how well it works, but you can always try "Myco+" a natural herbal supplement whose sellers claim its ingredients are mostly from rainforests. It is made/sold by Raintree Nutrition. I have no affiliation whatsoever with either of them. Oh, except that I've spoken with Dr. Nicolson and he's a really nice guy.
Oh, one thing I remember Dr. Nicolson "liked" for mycoplasma infections was Transfer Factor from Chisolm Labs. It's available directly from Chisolm Labs (USA) or via the Prohealth.com website.
Hope this helps
Hogwild
I am new here, (am just making my second post tonight), but having myco myself, I'd strongly suggest doing some reading of research and treatment recommendations from Dr. Garth Nicolson.
website is at www.immed.org
The Institute for Molecular Medicine.
I have read his work, and he is one of the leaders in the field. He uses drugs, natural meds/supplements, diet and more.
Also, I don't know how well it works, but you can always try "Myco+" a natural herbal supplement whose sellers claim its ingredients are mostly from rainforests. It is made/sold by Raintree Nutrition. I have no affiliation whatsoever with either of them. Oh, except that I've spoken with Dr. Nicolson and he's a really nice guy.
Oh, one thing I remember Dr. Nicolson "liked" for mycoplasma infections was Transfer Factor from Chisolm Labs. It's available directly from Chisolm Labs (USA) or via the Prohealth.com website.
Hope this helps
Hogwild