First Consultation With KDM
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Dechi
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@Daffodil I have been a patient of his for a short time. I only saw him once in person, although it lasted 4 1/2 hours. For now he is having me do some tests confirm ME and decide which way to go next. I had a SPECT scan, Stress echo, ECG, holter, am waiting for an MRI. He has sent me to a specialized neurologist for testing also.
We're far from trying to treat, there needs to be a lot more testing first.
Daffodil
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adelheid55
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@JES @Allyb510
I have to say also that KDM does a very thoroug search for viruses, bacteria (stool tests) and a lot of other things.
The B12 he prescribes is not available over the Counter and he told us why this form of B12 is so important.
Our GP did say that Rifaximin was very adequate for the gut problesm she has.
Another thing: Our daughter got a prescription for a different probiotic than I got.
And no other doctor of many doctors we have seen (and paid for!) could put together the blood results. They all said it was a depression(as they like to say when they don't know what to do.
I have to say also that KDM does a very thoroug search for viruses, bacteria (stool tests) and a lot of other things.
The B12 he prescribes is not available over the Counter and he told us why this form of B12 is so important.
Our GP did say that Rifaximin was very adequate for the gut problesm she has.
Another thing: Our daughter got a prescription for a different probiotic than I got.
And no other doctor of many doctors we have seen (and paid for!) could put together the blood results. They all said it was a depression(as they like to say when they don't know what to do.
Oh definitely @adelheid55. I didn't know of anywhere else I could go to have such a thorough workup, so seeing KDM was a no brainer! Nearly every health condition I have has been diagnosed by tests I've organised and paid for myself: my M.E., oral allergy, SIBO and, most recently, osteoporosis. Shocking, really. In February, I'll be seeing a consultant allergist privately as I suspect I also have MCAS; the allergy aspect is so strong.
Was your GP familiar with Rifaximin? So many doctors aren't. Is he willing to listen to and act on KDM's recommendations?
I know the GPs in my surgery are quite huffy when you take matters into your own hands and organise your own testing. They mistrust results from any lab that isn't an NHS lab. But I'm determined they'll listen to what KDM has to say.
Do you also see KDM? Do you think the probiotics have been targeted to your specific needs and your daughter's?
Oh yes, when they don't know they will often slap a label of "depression" on you and try to get you to take drugs. Then, they stop looking for the causes of your long list of other symptoms. It does such a disservice to the patient.
Yesterday I came across an M.E. study that looked very promising at first glance. You may already know it. If not, you can read about it on PR and all over the internet; Naviaux's Aug 2016 study into 'Metabolic Features of Chronic Fatigue Syndrome'.
I wonder if I could private message you about the B12? Thanks.
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adelheid55
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@Allyb510 Yes, our GP was familiar with Rifaximin. He prescribes it for our daughter so we don't have to pay for it.
And yes, I'm also seeing KDM.
Otherwise he doesn't know much about Lyme or ME/CFS. So we are buying the drugs ourselves and our local pharmacy will get them.
I forgot (brain fog) he told us our daughter would need 18 month to 3 years to get better but couldn't say if better meant complete improvement. So no empty promises here.
You are welcome to PM me about B12 but I don't know if there is much I can tell you. It's just no over the counter B12.
And yes, I'm also seeing KDM.
Otherwise he doesn't know much about Lyme or ME/CFS. So we are buying the drugs ourselves and our local pharmacy will get them.
I forgot (brain fog) he told us our daughter would need 18 month to 3 years to get better but couldn't say if better meant complete improvement. So no empty promises here.
You are welcome to PM me about B12 but I don't know if there is much I can tell you. It's just no over the counter B12.
Daffodil
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hi justy. may I ask why you are going to be there for 8 weeks? will you be getting IV again? will you be going with a family member?
xo
Yep! finally getting there for my IV abx. My husband left his job so he could come for the first 4 weeks, then I have found an IV buddy, not a member here, who will come for 6 weeks as well and we will muddle on together. Its a bit daunting as I use a wheelchair and cant self propel for more than a few minutes and so does my IV buddy - but we will get through it somehow.
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@Allyb510 I have been seeing KDM for about 9 months and have made dramatic improvements following his treatment. He also suspected that I had contracted an infection many years ago, that now manifests itself with immunological responses to various triggers. I had been progressively getting more poorly after many years of what I just thought were recurrent viral infections, but I had reached the point of almost permanent sore throats, sinus infections, chronic headaches, nausea, brain fog & general exhaustion.
I was lucky as I was generally only mildly ill, but with bouts of moderate illness (not leaving the house, but able to get out of bed and onto the sofa) that were becoming progressively longer - months, rather than weeks. After many hopeless GP appointments & numerous tests, where I was told it was just my age (mid 40's!) or depression, I gave up on the NHS & trawled the Internet and after lots of research opted to see KDM.
KDM prescribed 3 months of antibiotics (Ofloxacin & Rifaximin) for gut bacteria, as well as B12, pro-biotics and immune boosting supplements (KDM said I had among the worse immune system results he'd seen). Getting the actual medications were a bit tricky, but I managed to persuade my GP to prescribe both the antibiotics. There was no problem with the Ofloxacin, but they were reluctant to prescribe Rifaximin due to cost, but in the end decided they would. I appreciate I was lucky that they agreed to it, but I was prepared to pay the cost if necessary. The rest of the prescription, I ordered online from Belgium and the Netherlands.
I still felt very poorly the first month, but made huge improvements over the following 2 months. I am much better than I was a year ago. I still have mild symtoms, especially if I push things too far, but I am now working full time again and enjoying getting out and about. I have even started gentle exercising again, but I am being very cautious.
I had my follow-up test done last month and have an appointment with KDM next week to go through the results. I have already seen a copy of the results and from what I can work out, most of the results have come back with improved immune system readings & the antibiotics seem to be working. KDM did initially say that he thought I would need 3-6 months of antibiotics, and that it would take me 18-24 months to get better. I'm looking forward to seeing what he says next week.
I was lucky as I was generally only mildly ill, but with bouts of moderate illness (not leaving the house, but able to get out of bed and onto the sofa) that were becoming progressively longer - months, rather than weeks. After many hopeless GP appointments & numerous tests, where I was told it was just my age (mid 40's!) or depression, I gave up on the NHS & trawled the Internet and after lots of research opted to see KDM.
KDM prescribed 3 months of antibiotics (Ofloxacin & Rifaximin) for gut bacteria, as well as B12, pro-biotics and immune boosting supplements (KDM said I had among the worse immune system results he'd seen). Getting the actual medications were a bit tricky, but I managed to persuade my GP to prescribe both the antibiotics. There was no problem with the Ofloxacin, but they were reluctant to prescribe Rifaximin due to cost, but in the end decided they would. I appreciate I was lucky that they agreed to it, but I was prepared to pay the cost if necessary. The rest of the prescription, I ordered online from Belgium and the Netherlands.
I still felt very poorly the first month, but made huge improvements over the following 2 months. I am much better than I was a year ago. I still have mild symtoms, especially if I push things too far, but I am now working full time again and enjoying getting out and about. I have even started gentle exercising again, but I am being very cautious.
I had my follow-up test done last month and have an appointment with KDM next week to go through the results. I have already seen a copy of the results and from what I can work out, most of the results have come back with improved immune system readings & the antibiotics seem to be working. KDM did initially say that he thought I would need 3-6 months of antibiotics, and that it would take me 18-24 months to get better. I'm looking forward to seeing what he says next week.
Daffodil
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@Pacificjade your post made me so happy!!!
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@Daffodil Thank you. I'm glad my post is helpful. I am over the moon that I feel so much better than I did before seeing KDM. I am still wary that it might not last, (it's difficult to believe that you might be getting better, when you've felt ill for so long!) but although I have the odd day or two when I don't feel so good, it is only for a day or two and the symtoms are much much milder than they were.
That's wonderful news. Ive met many of his patients who are doing well like you when im at the clinic. It is heartening.
Do you mind if I ask how long you have been ill for?
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@justy Not at all, I'm happy to answer any questions. It's a difficult question to answer though.
I had glandular fever in my early teens, and suffered what I always felt were recurrent bouts of the illness, or viral infections as a result of the glandular fever, through my 20's and early 30's. I would only ever be laid up for 2 or 3 weeks at a time but I always felt that it wasn't normal to be ill so often. I would have good years, when I was only ill 2 or 3 times a year, but other years I would have 5 or 6 bouts.
When I reached my mid 30's I had a succession of substantial life changing events (including major moves, having children, starting a business) and was constantly on the go. Even if I had one of my re-current illnesses I pushed through, without resting to get better, out of necessity.
Eventually the symptoms became much more severe and wouldn't go away, so I was unable to carry on as normal. This was about 4 years ago and I spent 2 years in a vicious cycle of spending time in bed when I was too ill to carry on and then working like mad (at work & at home) to catch up & get on top of things.
The periods of being too unwell to carry on got longer and longer, so I sought help from a private fatigue specialist (after failing to get help from my GP), who diagnosed CFS. Following the specialist's advise I started pacing and managed to control the symtoms much better.
I was still having periods of 2-3 months where I was too ill to do much more than lie on the sofa, which is when I made the decision to find someone who would try to help find out what was wrong with me and try to fix it!
Sorry, that was a long answer for a short question!
I had glandular fever in my early teens, and suffered what I always felt were recurrent bouts of the illness, or viral infections as a result of the glandular fever, through my 20's and early 30's. I would only ever be laid up for 2 or 3 weeks at a time but I always felt that it wasn't normal to be ill so often. I would have good years, when I was only ill 2 or 3 times a year, but other years I would have 5 or 6 bouts.
When I reached my mid 30's I had a succession of substantial life changing events (including major moves, having children, starting a business) and was constantly on the go. Even if I had one of my re-current illnesses I pushed through, without resting to get better, out of necessity.
Eventually the symptoms became much more severe and wouldn't go away, so I was unable to carry on as normal. This was about 4 years ago and I spent 2 years in a vicious cycle of spending time in bed when I was too ill to carry on and then working like mad (at work & at home) to catch up & get on top of things.
The periods of being too unwell to carry on got longer and longer, so I sought help from a private fatigue specialist (after failing to get help from my GP), who diagnosed CFS. Following the specialist's advise I started pacing and managed to control the symtoms much better.
I was still having periods of 2-3 months where I was too ill to do much more than lie on the sofa, which is when I made the decision to find someone who would try to help find out what was wrong with me and try to fix it!
Sorry, that was a long answer for a short question!
Thanks for your very encouraging story Pacificjade! A really interesting read and great to know that you're getting better with KDM's help. And your improved tests results back that up which is very reassuring. (I've never heard of Ofloxacin... interesting...)
I'm shaking my head here because our stories are similar in so many ways. The way the disease has evolved is more or less the same. No wonder KDM told me he's heard my story thousands of times before.
Is it weird that I'm going to print out your story and tack it on our notice board to show my husband? He keeps asking "Where are the people who've been "cured" by KDM?" As if it was that easy! As I often say, I've been ill for a long time so I don't expect to get well over night. But if you're seeing results already, then that is definitely reassuring.
Please let us know how you get on next week. x
I'm shaking my head here because our stories are similar in so many ways. The way the disease has evolved is more or less the same. No wonder KDM told me he's heard my story thousands of times before.
Is it weird that I'm going to print out your story and tack it on our notice board to show my husband? He keeps asking "Where are the people who've been "cured" by KDM?" As if it was that easy! As I often say, I've been ill for a long time so I don't expect to get well over night. But if you're seeing results already, then that is definitely reassuring.
Please let us know how you get on next week. x
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@Allyb510 Not weird at all! It's nice that I can offer hope. KDM said I was a classic case of the type that he has helped many people with before.
I had not posted on the forum prior to this thread, as I am very much a lurker normally. When I was ill, I would read the forum all the time trying to glean as much information that might be of help. I think part of the problem with 'success stories' is that when people start to feel better, they start living their lives again & don't need the support of the forum. I certainly have not visited the site that frequently since feeling better.
It was my follow up appointment with KDM and the fact that he has helped so much that prompted me to check the forum and see if anyone else had success with him. I saw your post and did think how similar our stories were.
KDM also pressed my abdomen during my first appointment and found an incredibly tender spot, that I hadn't even realised was there.
I have had my follow-up meeting with KDM now & he is happy that the infections have been cleared, it is just a matter of time now for my body to heal & build back my immune system. He said I could get ill again if I suffer another nasty infection, but fingers crossed that I don't!
I think the Ofloxacin was to treat Chlamydia Pnemoniae, which was one of the bacteria I tested positive for. Whereas the Rifaximin was for Yersinia, which apparently is much harder to get rid of.
Anyway, I hope KDM will be able to help you as much as he is helping me.
I had not posted on the forum prior to this thread, as I am very much a lurker normally. When I was ill, I would read the forum all the time trying to glean as much information that might be of help. I think part of the problem with 'success stories' is that when people start to feel better, they start living their lives again & don't need the support of the forum. I certainly have not visited the site that frequently since feeling better.
It was my follow up appointment with KDM and the fact that he has helped so much that prompted me to check the forum and see if anyone else had success with him. I saw your post and did think how similar our stories were.
KDM also pressed my abdomen during my first appointment and found an incredibly tender spot, that I hadn't even realised was there.
I have had my follow-up meeting with KDM now & he is happy that the infections have been cleared, it is just a matter of time now for my body to heal & build back my immune system. He said I could get ill again if I suffer another nasty infection, but fingers crossed that I don't!
I think the Ofloxacin was to treat Chlamydia Pnemoniae, which was one of the bacteria I tested positive for. Whereas the Rifaximin was for Yersinia, which apparently is much harder to get rid of.
Anyway, I hope KDM will be able to help you as much as he is helping me.
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@Pacificjade how was the CPN treatment you described above? I have my call with him next week so anxious to see if he prescribes the same Rx for me. Did you experience die off or herxing?
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@gdbennett I did experience horrendous headaches and nausea for the first 3-4 weeks of my treatment, but I wasn't sure if it was a herx reaction; side affects of the antibiotics or a combination of both. Either way, it was bearable and fairly short lived in the scheme of things.
It was certainly worth it in my case.
It was certainly worth it in my case.
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Uggh that does not sound fun. I'm still trying to work some. Did anything help to reduce the effects? From what you said, I take it you're much better now though. How active can you be? Exercise, work, etc?
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@gdbennett No, nothing much helped. I would take paracetamol to help with the headaches, (ibuprofen not recommended with Ofloxacin) which took the edge off.
I am much better now and have gone from rarely leaving the house maybe working 3-4 hours a day (own business at home) to working full time, getting out (shopping, driving, evenings out) & low impact exercise (walking & yoga). I still have mild symptoms and still have to have the odd day off to rest, but it feels like living a normal (albeit, less energetic) life again.
What level are you at currently?
I am much better now and have gone from rarely leaving the house maybe working 3-4 hours a day (own business at home) to working full time, getting out (shopping, driving, evenings out) & low impact exercise (walking & yoga). I still have mild symptoms and still have to have the odd day off to rest, but it feels like living a normal (albeit, less energetic) life again.
What level are you at currently?