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Reply within the topic - Dental
Replied On: Jan 12, 2017 11:11am
Yanni

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Just an update, after over 30days of waiting for my dentist for an emergency appointment the dentist finally saw me and once again did not take seriously the fact that the tooth had lost the repair and the other one had half a repair intact, the fact that I have high blood counts were not considered and still delayed the process even further, I finally had to go to another dentist who referred me to a dental surgeon.
A full mouth xray exposed a even worse situation on the left side, it appears the swelling I had brought to the attention at the time just before the dx back in 2008/09 was an infected molar which has been busy infecting me all along but the other tooth behind was extracted instead.
So now on the 91 st day after I had ask for an emergency appointment the 2 molars on the right side have been extracted on the 21st December, on the 18th January next Wednesday the one on the left will be extracted. I was given the option of a root canal treatment of the molar on the left hand lower side but I refused, I want the tooth extracted and by doing so I hope to prove my theory that the source of the so called CLL is dental. Oh once again must mention NO TOOTHACHE PRESSENT and it turns out all the 3 molars which are finally been attended to are NOT ROOT CANALS either. So the no pain issue may be the reason why the dental source of our so called CLL goes unnoticed.





Reply within the topic - Where did that come from?
Replied On: Oct 18, 2016 04:38am
Yanni

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Sunflower it appears it is not only Root canals we have to be concerned about. Please have a look at what I wrote this morning.....
"It is 3am and Ï am awake with the noise in my ear and that heart beat sound in my ear.
Yesterday I finally had my emergency appointment with the dentist, strangely enough at the same time the other dentist that I made had phoned and for the 2nd time cancelled my emergency appointment for the 20th.
Now the big surprise and very important for all of us here. The teeth that are in the images above in the previous post above exposed and there is no pain even with the one showing the roots of the tooth ARE NOT ROOT CANALS so we have another big concern here but also highlights another hidden source of bacteria infection besides the root canals without any pain been present. The dentist did explain that are different reasons for that, but I will like to look more into it now.
Now back to the dentist, he has not extracted my teeth as I requested, he asked for my NHS number so he can communicate with my oncologists and once he establishes the high blood counts he will prescribe the prophylactic antibiotics and carry out the extractions, what concerns me is I have made them aware that I am already on antibiotics?
I also mentioned that besides the noise in my ears my right eye is showing signs of infection and I very concerned. It is almost a month since I lost the repair now.
But at least now we CLLers have another hidden source of bacteria besides the root canals. Before the loss of the repair and my own borescope inspection I would not have been aware that there is anything happening in those mollers.
My cousin has made me aware that in USA he had a similar situation, his dentist uses liquid nitrogen on the teeth and teeth that do not show any pain are attended. The tooth that was identified in his case the repair was removed the cavity was cleaned out and then iodine was applied to the area for about 2 hours before finally resealing it.
SO AGAIN it points to dental hidden bacteria in not only root canals but in teeth that we and our dentist assume all is fine."....





Reply within the topic - Dental
Replied On: Oct 18, 2016 04:30am
Yanni

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It is 3am and Ï am awake with the noise in my ear and that heart beat sound in my ear.
Yesterday I finally had my emergency appointment with the dentist, strangely enough at the same time the other dentist that I made had phoned and for the 2nd time cancelled my emergency appointment for the 20th.
Now the big surprise and very important for all of us here. The teeth that are in the images above in the previous post above exposed and there is no pain even with the one showing the roots of the tooth ARE NOT ROOT CANALS so we have another big concern here but also highlights another hidden source of bacteria infection besides the root canals without any pain been present. The dentist did explain that are different reasons for that, but I will like to look more into it now.
Now back to the dentist, he has not extracted my teeth as I requested, he asked for my NHS number so he can communicate with my oncologists and once he establishes the high blood counts he will prescribe the prophylactic antibiotics and carry out the extractions, what concerns me is I have made them aware that I am already on antibiotics?
I also mentioned that besides the noise in my ears my right eye is showing signs of infection and I very concerned. It is almost a month since I lost the repair now.
But at least now we CLLers have another hidden source of bacteria besides the root canals. Before the loss of the repair and my own borescope inspection I would not have been aware that there is anything happening in those mollers.
My cousin has made me aware that in USA he had a similar situation, his dentist uses liquid nitrogen on the teeth and teeth that do not show any pain are attended. The tooth that was identified in his case the repair was removed the cavity was cleaned out and then iodine was applied to the area for about 2 hours before finally resealing it.
SO AGAIN it points to dental hidden bacteria in not only root canals but in teeth that we and our dentist assume all is fine.




Topic - Dental
Topic Made On: Oct 14, 2016 02:56pm
Admin

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**********Posted on behalf of a member*************

I hope my experience may give all my fellow CLLers here some indication of the source of the bacteria that cause my increase in Lymphocytes and the need to educate our dentists of our vulnerability when carrying out cleaning procedures or dental work.

Robert was kind enough to add some images I provided in connection with my Root canals exposed in my mouth, one has lost the repair all together, this situation is real time with the infection clear as can be, it is a good example of what is hiding in our teeth so let us use the negative situation I find myself in and create some positive information.

The last molar is also in a bad way, now there is no pain in the tooth area but some in the jaw, side of the head and this noise in my right ear and that is what makes this repairs dangerous we are not aware of the tooth infections, you see there is no pain at the teeth even now 20 days after I lost the repair.

Image 1
Image 2
Image 3
Image 4

I also include one which is showing signs of separation and leaking dark area.

Here is the one that shows possible infection in the surrounding tissue .

I thought to include some of my skin issues from 2012 excuse my DIY iodine “supposed solar keratosis” repair method
solar keratosis 1
solar keratosis 2
I had to hide from the world for a while, but the iodine worked wonders the iodine penetrated right to the core, the biggest surprise was the regeneration of the skin.
But more importantly look at the proximity of the infections, which correspond to the internal area of where my gum meets my lips on the inside, this were wrongly blamed to the sun, I on purpose exposed my skin to sun with no reoccurrence since the extraction of the 34 year old gold tooth, look at this image
at the time of extraction look at the infection within the gold tooth, the x-rays could not penetrate the gold so appeared well to the dentist, it had to be pulled bit by rotten bit with further surgery to remove the roots.

So here is proof enough that in my case anyway the possibility of my dental source of CLL, with the gold tooth extracted I was able to get my WBC in the normal range. But I feel I am in a tug of war situation, when I eat carbs sugars etc. my WBC increase Lymphocytes mainly, when I return back on the strict diet the Lymphocytes drop back down, to me it indicates that the bacteria in this leaking teeth cause the increase and challenge my immune system.

Now I will also like to add my latest dental experience I had since last year asked the dentist to extract the tooth that is now exposed and he has refused, instead persisted to clean my teeth which caused my gums to go enflamed, followed with fever like symptoms and nights sweats for a few days after. After the 3rd clean with the same side effects, I asked for a Prophylactic antibiotics before the next clean and he refused to issue me with the prescription and referred me back to my GP who also would not consider it, so I had to cancel my appointment for yet another unnecessary clean which aggravated my situation.

The last 20 days I am walking around with the exposed root canal and a half sealed one and the dentist is using every reason not to give me an appointment. Tried to get other dentist appointment but the earliest is now on the 20th that is a month from when I required an emergency appointment, all this time the infected root canal is exposed, the noise in my ears is driving me mad. I will like to repeat that god forbid by extracting the root canals and my CLL disappears altogether.





Reply within the topic - Where did that come from?
Replied On: Oct 05, 2016 03:51pm
Yanni

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Sunflower I purchased a borescope camera and have taken some images of the tooth in question and at the same time did a self examination of my other teeth. The tooth in question (well what is left) of it clearly shows infection, but more importantly 2 other teeth have portions of the filling missing and black matter coming out from the gaps. How do you share images here ?? Just returned from the GP and he is very concerned of the state of my teeth.
Now professor Fagen from Cardiff university a while back did admit that in the early stages bacterias are the drivers of CLL and possibly sugars fuel them and I tend to believe that is the issue in my case. Most of my skin cancers usually associated with CLL were in the area just outside my gum area. The bacteria I think we have to content with is helicobacter Pylori which use the plaque in our mouth as a reservoir and possibly in my teeth namely the gap between the white filling (I also have replaced all my amalgham fillings before CLL dx) and the root canal treatment into the root canal. But this bacteria also hides in the stomach, is also responsible for for stomach ulcers and stomach cancers. In one recorded document patients with our sister lymphoma NHL when treated for Helicobacter Pylori the NHL disappeared.
So it may be present in our stomach, acid reflux GERDS are possible signs of H.Pylori. Somebody close to me tested positive for H.Pylori twice, treated twice and the symptoms keep returning, her dentist has now removed 3 teeth in the last 3 months all infected to the core all 3 root canals. This person was dx with lung cancer last year August, has refused Lung surgery and has refused Chemotherapy. We managed to stop the Tumor this far. But we are not kidding ourselves it has stopped growing but it is still there, well at least we have proved the theory that cancer cells split and multiply is wrong well in this case anyway for now. Keep your fingers crossed for us she is going for the next scan on Friday.





Reply within the topic - Where did that come from?
Replied On: Oct 05, 2016 12:07pm
Sunflower

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Just to put things into perspective regarding dental work - I was diagnosed with CLL about 3 years ago, never smoked, never drink, fairly healthy, never overweight, and NO ROOTCANALS neither ANY METAL OR OTHER CROWNS & BRIDGE work ever done in my mouth! I am 58 years old. I had a couple of amalgams which got replaced over the years with white fillings. If it will make you feel better to get your teeth removed which received root treatment in the past, then that is OK - that is your choice, but there is no scientific proof that this might be the cause for CLL, neither chronic infection (which you might have had before the root canal treatment). If root treatments are to blame - then most of the people in the western world will have CLL today, which is not the case. It might also be a good idea to get a second opinion from another dentist before just jumping to conclusions. Dentists do not remove teeth easily which could function still perfectly well, and that is why they are probably reluctant to do so. The only chemical that is definitely linked to the presence of CLL is the Agent Orange. Now...I have never been in any war situations where this was used, but one never knows if it somehow came into the food cycle, or reach our bodies through all the crap one eats these days. Just saying...





Reply within the topic - Where did that come from?
Replied On: Oct 04, 2016 09:27am
Yanni

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Ziggy99 pay particular attention to existing dental works in root canals, gold teeth, after my 34 year old gold tooth was extracted after my insistence the skin cancers /solar carcinomas stopped appearing, I used to control the skin issues with tincture of iodine 7%,cryotherapy and creams only made them worse. The dangers with the gold teeth during examinations the xrays do not penetrate the gold so the dentist assume all is ok if roots appear healthy, in my case a rotten tooth was under the gold covering. As I write here I have a tooth that has lost it's repair and is exposed no pain in the tooth but in the jaw area and a year on that side of the face throbbing as if my heart is beating in it. Today is the 13th day it is in this state the dentist that was supposed to extract it last year is avoiding to treat me. God forbid that once my root canals are extracted and my lymphocytes drop down into the normal range how the dental professionals would look.





Replied On: Oct 03, 2016 12:41pm


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Hope you are all well
I will like to share with all, that once again I demonstrated by moving away from low carb ketogenic diet for 2 weeks how my WBC increase and then reversing them back down but this time I achieved that within 5 weeks. I did maintain my high Vitamin D3 intake and a 25(oh)d3 of around the 305 nmol/L through this period. Well this demonstrates that sugars are responsible of fueling this bacterial infections and thus the Lymphocyte increase.
I will like to repeat this is connected to my Dental and periodontal issues and all signs point to the root canal treatments.
Since then a root canal tooth that I have been trying to get the dentist to extract for over a year now has started breaking up, exposing it's inner hidden infected reservoirs. I cannot get a emergency appointment 12 days down the road, now there is no pain at the tooth as it is a root canal tooth, this highlights the dangerous situation and risk to us CLLers, no pain we interpret as nothing wrong but here is perfect example how we get infected in a chronic manner, but there is throbbing in my ear with a sudden jump in monocytes.
I have the tooth exposed and would like to know from anyone if there is a way of testing the tooth for infections insitu in this exposed state. I am prepared to travel so we all can get some real indication of what is happening in the dental and periodontal environment in a real time situation.
Hoping to hear from you.
Yanni





Reply within the topic - Where did that come from?
Replied On: Oct 03, 2016 10:39am
ziggy999

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Martin, Thank you for the advice. Fortunately I have been teetotal for decades and I was advised by the consultant at my last appointment that I should avoid cheese with cultures. I was also told to wash my hands frequently and (this one I will find easy!) to avoid changing babies' nappies. I am relaxed about the condition and go about my life as normal, often forgetting that there is anything to be concerned about.





Reply within the topic - Where did that come from?
Replied On: Oct 03, 2016 07:34am
Admin

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Post on behalf of a member:

I had the same diagnosis at least 5 years ago, enjoy every day and stay away from Stilton cheese and alcohol if you can? Martin.




Topic Made On: Oct 01, 2016 04:46pm
ziggy999

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I was diagnosed with CLL six months ago after a routine blood test at my medical practice. I had no idea there was anything wrong. After the initial shock, I was encouraged by the consultant who broke the news to me that I could possibly live for another 25 years and, as I am over 70, I should not worry too much about it. He added that chronic was better than acute and if I was going to have cancer at all, this was the one to get and I would probably die from something else anyway. Yippee.
After a follow up blood test I am in the watch and wait state and do not need a further blood test for six months.
Nevertheless I am aware of the need for good hygiene, diet and exercise and feel quite confident about the future.





Reply within the topic - Ibrutinib
Replied On: Aug 03, 2016 07:35pm
Wendymc

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Thanks for that, we are in Northaptonshire, Ian attends Addenbrookes in Cambridge.
We saw a Dr in clinic yesterday and are feeling a bit more positive , seeing the specialist next month, on wards and up wards . Wendy





Reply within the topic - Ibrutinib
Replied On: Aug 02, 2016 10:18am
chandaj42

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Hello, Wendy. I have similarly been on Ibrutinib for two years, just short actually. The one side effect I have experienced is AF and I am taking an anticoagulant, apixaban, for that. This apart, ibrutinib has given me a new lease of life. I still work full time and run my own business - something I was thinking of giving up not so long ago because of my CLL. Other possible side effects of joint pain could be put down to other drugs or even my age - I am 70 at Christmas. My Consultant tells me my blood tests will tell the full story; if anyone was looking at the results of recent tests, they would not know I'd had a problem with CLL or any blood disorder. My Hb is 17.3 and steady and MRD gradually going down. Liver and kidney functions are fine.The thing to tell your husband is that Ibrutinib has been marvelous for some patients so maybe he has to persevere a little longer. Even if he's taken off it, there are plenty of other treatments out there. Just a case of finding the right one. My CLL was diagnosed in 1992! I had FC chemo in 2006 and when I relapsed in 2010, I had ofatumumab. The point I am making is that my hematologists have kept me going and now I'm on Ibrutinib which is called a wonder drug in some quarters. Whether it is or not, we are in good hands in the NHS. So really, chin up and keep going. Hope these few comments help. Unfortunately, I can't see in which part of the country you live but would willingly call and discuss. Alan







Reply within the topic - Ibrutinib
Replied On: Aug 01, 2016 12:46pm
Wendymc

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Hi my husband has been taking ibrutunib for 2years now, he suffers from mouth ulcers, lesions on his head, leg, arms in his ears and a huge one on his left hand which has now turned into a skin cancer. All side effects from the drug. He has now been told the ibrutunib might not be working as it should. He is very very down at the moment and needs lots of support , I can only give so much as he is a typical male and doesn't like to talk about it, if we ask him how things are he always fine, when I can clearly see his not.
Has anyone else been through this , or can help with any information , or just maybe talk to him as he needs to share how things are with someone maybe going through a tough time. As I think that would help him more than I can as you know how it feels. Thank you Wendy. Maybe you could email me and I can pass it on to Ian. He is 64, was diagnosed with CLL in 2005. Was in remission untill 2013, still works full time .wendymclees@yahoo.com





Replied On: Dec 19, 2015 09:52pm
JAYNEC

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Don my latest results were:-

WBC - 31.1

RBC - 4.66

Lymphocyte count- 26.21






Replied On: Dec 19, 2015 09:48pm
JAYNEC

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Hi Don,

I sympathise I had Bronchitis last December 3 times after newly being diagnosed. I found that drinking a table spoon of Lemon juice with a table spoon of Vinegar and tablespoon of Honey and some cinnamon powder (or oil if you can get it) all mixed together to make a half cup of drink with hot water worked on the cough... This was recommended to me by a cousin who lives in Australia....sounds bad but doesn't taste as bad as it sounds.

I now take 1,000mg vitamin C, 2 x D3 tablets and 25 echinacea Oil drops a day to try and keep them away altogether....touch wood haven't had a cough or cold since taking them! This winter will be the test when the weather turns really cold. Everyone around me at the minute seems to have either coughs or colds and so far all good!!

If your symptoms last more than 48 hours get medical help!! I got through boxes of tissues coughing up as you say not nice!! Not pleasant for family and friends either at this time of year. Hope you have support to help you through your recent news?? What is you lymphocyte count??

Cindy





Replied On: Dec 19, 2015 11:08am
Kevin

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Replied On: Dec 19, 2015 10:59am
Kevin

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Hi Don,
I fully understand your severe cold, had one myself a few times and each one seems to last forever! Sadly with CLL we basically all have an immune system that is said to be immunocompromised. This means our immune systems aren't as reliable as we would like and simply can't cope with even some of the more basic infections. If your symptoms persist I would suggest going to your GP and perhaps getting some antibiotics to help boost your immune system and fight the infection.

Take care

Kevin - Essex, UK





Replied On: Dec 18, 2015 11:24pm
Kevin

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Topic Made On: Dec 18, 2015 10:41am
MR2Don

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Hi,
Just discovered and joined the forum. Was diagnosed early 2015 with a WBC of 23, latest test (October) showed 21, so "stable".
I think I'm in the middle of my first real realisation of what CLL is all about. Copped for a "cold" a couple of weeks ago, and it just seems to be getting worse. In a previous existence, this would have been gone within days, but it's stuck as a throat infection which causes severe coughing spasms and a lot of phlegm (sorry about that!). Anybody else had similar and could drop some hints of how best to "weather the storm".