Thanks to this wonderful community, my conventional and holistic medical worlds are working together! (I'm CLL W&W but now longer "waiting" since 2015)
This past Tues I went to see Dr. Sulica, Otolaryngologist at the Sean Parker Institute for the Voice in NYC. This was based on the recommendation of members of this community. Thanks you! So, I learned why my lower tonsil tissue (swollen) might be the cause of my loss of upper vocal register. That was great. But the big takeaway, according to him, is that he saw a pretty bad sinus infection in my right cheek even though I reported to him a felt fine, sinus-wise. He said this problem was simply a mechanical issue with my sinus passages in my right cheek area which might be addressed though surgery, although he was extremely cautious about suggesting this option.
At least now I know the surgery option might make a big difference in my general health because fighting a constant infection can't be a good thing (and must explain why my WBC is high, around 20K at last test).
So my question to everyone is: Does anyone have a thought about the possibility that a chronic sinus infection can be the underlying cause of an auto-immune response such as my CLL? As a long-time sinus sufferer, this makes a lot of sense to me.
A bit more detail: A month ago, I started cold-press juicing and larger dose VIT C, among other "clean" lifestyle diet protocols, and I have now gotten back most of my vocal range, albeit the vocal quality is not back to normal yet. I guess for now, I'm creasing my VIT C usage to see how much it will take (and if) it can reduce or knock out the sinus infection as many doctors in the alt field indicate is possible. (Thomas Levy, MD etc.)
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CLL is a B cell lymphoma, a subtype of Non-Hodgkin's lymphoma, that is caused by genetic abnormalities. Certainly your sinus problems mght be related, since CLL can lower our immunoglobulin A counts in the mucosal membranes and frequent infections are more common.
Please be carefiul of higher doses of VitC, it can over stimulate B cell production, and that you do not want in CLL.
Have your CLL specialist haematologist, run your immunoglobulin levels to see if IVIG may be of benefit to you...
Not sure if I'm reading this correctly, but this NIH study indicates to me that VIT C may help B cell apoptosis in mice, quote: "Vitamin C slightly increased apoptosis of B cells dose-dependently and behaved as an antioxidant."
That should be Dr. Susan Leclair... you can view her series of videos on Patient Power... wonderful women, and a great and entertaining speaker on all things dealing with BLOOD. 💉💉💉
I have sinus problems and they are kept in check with monthly IVIG and prophylactic dose of Azithromycin. I breathed a deep sigh of relief after my ENT surgeon showed me my Sinus scan, and then said he thought surgery could lead to scar tissue and more infections. Also being careful is keeping it all at bay.🤞
My sinuses are totally filled with fungal infection... aspergillus, so I'm simpatico with the constant.. drip drip...
Doctors tend to view infections as bacterial, or sometimes viral, but because it is rare, fungal infections are often overlooked...and proper nasal swabs are rarely taken.
CLL patients with sinuses issues need better diagnostics in this area of things...
Long before CLL i had chronic sinus issues which required a surgery called turbinectomy which allowed drainage and i have more or less never had another serious infection over a 20 plus year period
BUT after CLL i became intensely allergic to mostly outdoor things that were a trivial issue in the past and they did not respond to any OTC medications
And it gets worse as while i have found a nasal spray that works to some extent the issue causes my upper and lower jaw to swell and push fluid into my teeth roots so as a result and infection that requires my 3rd root canal and cap in 18 months
The tooth in question was just xrayed and cleaned 7 weeks ago and was perfect before the fall season
Thomas Levy, MD, recommends a little hydrogen peroxide (3%, 3-4 capfuls) in water in a water pick 2X/week for all gum/teeth issues/cleaning/general health. After looking into the teeth issue and chronic disease, I bought a water pick recently and love the difference. There's a great talk by a former eye surgeon about the serious issues involving root canals, implants etc. Basically, they will always remain persistent sources of infection because you have dead tissue in the body: youtube.com/watch?v=pm-Ia6v...
This can be mitigated by extremely careful and frequent deep cleaning/hygience as indicated by him and Levy above.
Wow, so glad you posted this. I too, have lost my upper register. At first, I thought it was just from non-use. Then, I thought it could be lymph glands pressing on the vocal chords. Then, I read somewhere that CLL is a cause of increased chances of cancer of the larynx. So, my take-away from this is that a sinus infection (though not detected) might be a cause. My second take-away is in regards to your observation that chronic issues can impact our CLL - or is it vice versa? If one has chronic infections, wouldn't our immune systems be kicked into high gear over a long time which would cause the over-abundance of white cells being produced (and not dying off)? Have there been any studies that might correlate a history of a chronic condition and the progression of one's CLL?
These are exactly the questions I'm asking - and what I have come to believe is that every illness/disease has a cause of some sort and the result (symptom) is what conventional medicine is focused on. Of course, there is no such thing as CLL, being a cause - in my view - it is the result of something which precedes it. In my case, a chronic infection like low-grade sinusitis, is an excellent candidate to be the culprit. Now, it may turn out not to be, but it's hard to imagine that a body could deal with fighting an infection for years and years and not have something chronic to show for it. As I am writing to you, this fact is emerging ever more clearly for me, so thanks again for your reply. We are all helping each other.
btw - footnote - today I started to experience the sinusitis more accurately and I increased the VIT C that I've been taking - it's nothing like what some people recommend as being possible - but I'm I the 15-20 gram range, again very low in some circles but it's so clear that it reduces the severity of the symptom. My only problem is having some fear to increase even further, but I will do it gradually. For now, I see that organic juicing, select anti-inflammatory herbs and such, plus large dose VIT C is very effective, immediately perceived as having a positive effect. Very promising.
So in the meantime, I'm keeping the surgery option on the back burner - especially after someone posted that the scarring from surgery can actually worsen the problem. This makes a lot of sense to me because surgery and attendant scarring is a serious violation of the body and really prevents that tissue from working properly. Any athlete will tell you that I'm sure. So, while surgery is not off the table by any means, I will continue to seek the alternative path. My wish is for more and more of us to have an open mind and not to give up alt/comp medicine too quickly. It takes a lot more trial and error and education for it to work because it involves every factor of our life, but the possibility of real improvement/cure is that much greater, again IMO.
Check out the video I posted earlier - the MD, Jerry Tennant is truly a brilliant scientist.
For some reason I'm unable to edit my previous post so apologies for some of the incorrect word usage and grammar. To clarify - my sinusitis was more acute this morning so I dosed up with VIT C and fresh juice, garlic, turmeric etc and within an hour or two felt so much better, ie: The infection was signifcantly reduced. Now true, Flonase can be very helpful, but it comes with side effects, it's poison to the liver like every drug, and eventually it wont work. So I'm appreciating my new approach. My wife keeps with the Flonase and it's just a continual trip to the Pharmacy. (She can't stomach the VIT C because of her IBS.)
I also use Flonase and have often wondered how it affects my bloodwork since it is a steroid. There is so much to consider and while some of it may seem simplistic, I wonder if the "experts" have looked into any of our observations.
There is an enormous amount of conventional scientific literature that confirms the benefits of many alternative health approaches (like high dose Vit C) so if you search you can probably find what you're looking for. The problem is that doctors are not "experts" on anything - they have been highly trained in two modalities (three if you count "radiation"): Drugs and surgery. And drugs must be patented so they can make the maximum amount of money off the individual buying the poison. Hate to put it that way, but that's not a jaded statement. Pharmaceuticals all come with the most serious warnings you will see on anything available to the public. But we take them like guinea pigs because that's how the system functions from the top (drug. co's) to the bottom - mostly well-meaning doctors who must go to pharmaceuticalliy- supported universities, so they don't know any better. In a perfect world, we would have all the positives of conventional medicine, which would be used in emergency situations mostly in my opinion, with all the daily protocols proven effective by holistic practitioners from every culture and part of the world. In the meantime, we have to take full responsibility for putting our health puzzle together. I hope that doesn't sound cynical or radical - if it does I apologize and encourage you to follow your gut/heart/instinct and mind all working together
The problem is that there is a lack of research specific to CLL and high dose vitamin C. That's not surprising given my on-line research found that CLL doesn't have the apoptosis triggers found in other leukaemia cell types. This paper discusses the relevant research - note the lack of CLL cell lines in the list of leukaemia cell lines studied:
Yes, thanks for weighing in - I'm definitely not putting all my eggs in the hope of a VIT C cure for CLL because like your research, I've found that CLL is rarely if ever mentioned in the holistic approaches to cancer that I've looked into for exactly the reason you mentioned. On the other hand, if I can reduce and/or eliminate some or most infections with VIT C for example, which are a byproduct of the general reduction in immunity associated with CLL, then that's a very good thing to do because it enhances quality of life. Thanks again for your help. Wishing you well
Ngtinfu - please see a good laryngologist! There are many possible reasons for a change in your voice - polyps, a hematoma, vocal misuse, including of the speaking voice, infection, lymph node involvement, bad tonsils, cancer - those are just the ones that come to mind right now. It’s important that one of your take aways is that you need to have a good doctor check things out!
Sorry for the confusion. My response was to Ngtinfu, who's name came out wrong. Because the editing feature hasn't been working, I couldn't fix it last night.
I agree. I've been mulling over the prospect of seeing my ENT for an examination. Not too concerned about the quality of my voice (my singing days are over), but cancer, yes. Thanks for the nudge!
The list is much longer than mine above, and if you start googling you can convince yourself that everything above applies to you. Start with a good voice specialist.
There are a million possibilities for voice and upper respiratory issues - especially at this time of year. I'm on the other coast and spent 2 weeks with toxic air from the Northern California wildfires that settled in the San Francisco Bay area and pretty much made many people sick. It finally cleared out after the rain lately - but there is ash in the house masquerading as dust.
I still haven't recovered from that, especially throat which gets hoarse after I've been talking a while. My point is that it can be anything. Take it slow and don't jump to any conclusions. CLL is definitely not be responsible for everything in our lives.
I too experienced sore throat, difficulty in swallowing, violent sneezing and was referred to ENT. No abnormality was found. After about 2/3 years I learned about vitamin C. I have been taking 1000mg daily for 9 months. My throat is less sore and swallowing is now easier. Sneezing persists. My haematologist did not mention an association between CLL and ENT symptoms. Any views?
Benchica - Have you considered seeing an allergist? Your symptoms sound similar to those I had when I lived back east (US) and developed allergic reactions to the trees there, spring and fall. I would be fine when back home visiting, but within an hour of getting off of a plane, when I returned, I would have full blown allergy symptoms, including a sore throat, sinus issues, and usually, a low grade fever.
I actually cured my allergy to cats holistically after 4+ years with a top NYC allergist/immunologist didn't do the job. In fact, I was developing serious asthma as I tried to ween myself off the shots. Fortunately a friend of mine turned me on to buteyko breathing. (look it up on youtube.) After 3 weeks of buteyko, I eliminated all my asthma medications. I've found that simply learning these basic buteyko techniques can cure any histamine reaction in a short matter of time. The other technique that helps enormously and even more quickly with the onset of an allergic reaction is EFT (tapping). Like everything holistic, you have to do the "work." It's so much easier to accept a drug or therapy from an "expert." In my case, the allergy shots I was taking every week (and the first few years, 2-3X week) were a waste of time and money. Fortunately I had decent health insurance at the time. But now that's not even possible for middle income people in New York. Another topic...
Post nasal drip can cause cough, which irritates the throat and larynx. The extra mucus can make the pharynx and larynx more susceptible to infection, as well.
In my case, I had facial pain, and blew colorful stuff into the kleenex. I coughed. I had trouble talking at times.
But I coughed up only clear stuff.
My ENT did nasal cultures, and found several different bacteria over the last year. He did nasal and throat endoscopies. He did a cranial CT, pronounced my turbinates fine. He encouraged use of a neti pot (or the NeilMed spray bottle, which I like better, and still use every day). I went through several different antibiotics. He said that severe infections in the maxillary sinus (the sinuses over the molars) can lead to tooth infections, and he saw signs of past infections there on the CT.
My dentist has seen sinus infections on dental x-rays at the time of root canals in years past.
My immunologist checked my Ig levels. IgG was 507. Below normal, but not gone. But when she gave me the Pneumovax23 vaccine, and checked the titres weeks later, I hardly reacted to the vaccine. So she started me in SCIG (Cuvitru), which insurance is paying for. My hematologist said he could not justify SCIG based on CLL until IgG hit 400, but he said my immunologist did the right thing. He doesn't do titres in his practice.
I'm past the summer and fall allergy seasons (I've had allergies since childhood), and am entering the winter cold and flu season - the period when my sinus infections started last year. I will post my experiences.
In my experience, sinus infections are annoying, and lower the quality of sleep and life itself. I'm told that they're usually not deadly by themselves, even untreated. But infections can spread. Lung infections are a big problem, and are indeed deadly if you don't get proper care. So any cough that rattles in your lungs is a serious thing.
As far as vitamin C and CLL goes, I would assume that if it really helped, lesser or underdeveloped nations that can't afford drugs would be using it, and you'd see a lot of papers about it. In particular, doctors in India would be writing about it, because they are very much interested in simpler alternatives. But they're just not there.
I did find one paper that compared fruit, vegetable, and vitamin C consumption in CLL patients and several genetic markers:
Fruit and vegetable intake and vitamin C transporter gene (SLC23A2) polymorphisms in chronic lymphocytic leukaemia.
"RESULTS:
CLL patients were more likely to have a higher fruit consumption than controls (highest versus lowest quartile in g/day OR: 1.48; 95 % CI: 1.00 to 2.18; P = 0.03), whereas no associations were found with vegetable or total vitamin C intake. Based on log-additive models, rs6133175_A > G (OR: 1.19, 95 % CI: 1.00 to 1.41; P = 0.05) and rs1776948_T > A (OR: 1.20; 95 %CI: 1.01 to 1.41; P = 0.04) were associated with CLL. The haplogenotype analysis (rs1715364, rs6133175) supported the genotype results. No gene-diet interactions in CLL remained statistically significant after correction for multiple testing.
CONCLUSIONS:
These data suggest that both fruit intake and genetic marker in SLC23A2 may play an independent role in CLL biology."
This was a large, southern European study (Spain) - 434 CLL cases and 1257 randomly selected controls from primary care centres with genetic data of whom 275 cases and 1094 controls having both diet and genetic information.
Dietary surveys were used, which is not as good as locking people up for 20 years and controlling their diet. It would have been nice to have a worldwide collection of people, but that almost never happens. SLC23A2 is certainly not the only gene involved, but it and it's sibling SLC23A1 seem to be pretty important.
My 23andMe V3 chip results and my brother's V4 results show some of these markers, but not all of them. I haven't seen a list of 23andMe V5 chip markers yet. But the genetic issue is moot - I already have the disease, and no matter what SLC23A2 markers, vitamin C didn't make a difference. Oddly, fruit intake did make a difference. That could be due to past pesticide or herbicide spraying (dioxins) in orchards that might be different from vegetable farms. Also some Seville oranges are pretty different from other types of oranges, and act like grapefruit on the liver, which affects some drug metabolism.
Well, at least I can confirm that this morning at 4:30 am I was really stuffed up and feeling very congested even in my head. I took 4.5 Grams VIT C and fresh juice (beats, greens, cabbage, apple mostly), grapefruit seed extract (10 drops), one close of fresh garlic, some garlic pills, 1000 MG Turmeric (with pelerine) ,a few drops of frankincense oil and some "green" powder - an antioxidant powerhouse. Also did a nasal rinse (I use the sinupulse). Then at 6:30am I took another 2.25 Grams of VIT C plus lemon juice. By 8am I did another nasal rinse and felt 100% better . (Yes I didn't sleep much but that was mostly because I was composing a chorus of a song - I'm a composer.)
I know I'm not 100% clear because my wife says I still sound a bit congested, but this to me is pretty much as good as it goods. I have another 6.75 Grams of VIT C in a water bottle that I'll sip all day (and yes I'm at work and feel fine to work - in the past a something like this would knock me out of work.)
So, again, whether my CLL is helped by VIT C, I certainly can't say. But for the only CLL-related issue that I suffer from (sinustis), and I consider myself fortunate for sure, the VIT C is amazing. But it has to be up to bowel tolerance - so the dosage varies with what the body needs which is completely controlled by the infection itself.
The site looks like almost pure marketing to me. I feel bad enough getting info from a big pharma site, so I look in PubMed for studies and reviews, and check who works for whom. I want a less biased view.
Along the side bar is a bunch of additional links. One of them looked interesting:
High-Dose Vitamin C Therapy for Major Diseases (Seoul, Korea. September 25, 2008)
Many of the papers there go back decades. By itself, age of a scientific paper is not assurance of anything, except age. There's some dated as recently as 2007 from the Journal of Orthomolecular Medicine:
The found of the journal, Abram Hoffer, sounds like an interesting guy, but he never found anyone else who could replicate his findings in controlled settings. So I think it's something that just refuses to die, because vitamins are relatively inexpensive and available without seeing a doctor.
But, there are some interesting references to intravaneous vitamin C, which is totally different from oral vitamin C, i hasten to add. A good recent article that reviews it can be found at NIH:
Intravenous Vitamin C for Cancer Therapy – Identifying the Current Gaps in Our Knowledge
You can click to the end of the article to see their statement of professional and financial affiliations.
The authors lead off with:
"In fact, high dose intravenous vitamin C (IVC) has been administered by physicians for many decades as a complementary and alternative therapy for oncology patients (Padayatty et al., 2010). This practice has continued despite significant controversy in the field as a result of two high profile Mayo Clinic trials carried out in the late 1970s which debunked the initially encouraging findings of Cameron and Pauling (1976, 1978; Creagan et al., 1979; Moertel et al., 1985).
Research in the 1990s highlighting the important differences between oral and IVC pharmacokinetics resulted in a surge of new research in the IVC field with numerous in vitro, preclinical and clinical studies being undertaken (Parrow et al., 2013; Fritzt et al., 2014). The in vitro studies have provided useful insights into potential mechanisms of action and pre-clinical studies have indicated promising efficacy of IVC, however, clinical studies have so far been limited primarily to Phase I safety and pharmacokinetic trials (Du et al., 2012; Parrow et al., 2013). As a result of study design issues with many of the earlier clinical trials there remains controversy as to the efficacy of IVC in the treatment of cancer (Wilson et al., 2014)."
The authors mention that conditioning regimens before chemotherapy result in low blood levels of vitamin C. Those levels rise again after therapy, but some advocate intravenous vitamin C to further boost it:
"Patients with hematopoietic cancers typically undergo conditioning with multiple chemotherapy agents and a number of studies have shown significantly lower vitamin C status following the conditioning regimens (Hunnisett et al., 1995; Goncalves et al., 2009; Nannya et al., 2014; Huijskens et al., 2016; Liu et al., 2016; Rasheed et al., 2017). Although plasma vitamin C levels appear to return to baseline values approximately 1 month following chemotherapy (Mehdi et al., 2013; Rasheed et al., 2017), these values are still well below optimal. Administration of IVC to these patients has been shown to increase their circulating vitamin C levels and decrease markers of lipid oxidation (Hunnisett et al., 1995; Jonas et al., 2000)."
There's much other good stuff to read there for those interested in vitamin C and its relation to cancer. I don't get the sense, though, that either oral or intravenous vitamin C is a game changer. The author then calls for specific types of research to answer a list of question. The article does not mention CLL or even leukemia.
Nevertheless, I have orange or cranberry juice every morning, and blueberries on my oatmeal. Please let me know if you find anything specific to vitamin C and CLL.
I appreciate you taking a look very much. Actually, what separates this site from sites like Patient Power (which I think is very useful btw), is that Andrew Saul doesn't take money from advertisers. I do see him now promoting his video (and I agree it's a bit schlocky if you ask me) but that's hardly been the thrust of his site or his newsletter which goes back almost 20 years. Also, if you throw out all the "good stuff" as you say, then I guess you'd be correct in drawing your conclusion. But actually, having looked a little more deeply into this area, I believe that you haven't gone far enough to really understand what is involved in either the therapeutic value or suppression of VIT C. Like you, I too haven't found any direct links between VIT C and CLL but that's not the point with any of the alternative or complementary approaches. What they all share in common, is a holistic approach to why the individual is ill in the first place. And what one discovers is that a single therapy can be useful on a number of specific diseases. More significantly, a wide range of holistic approaches, including nutrition, exercise, energy work etc offer a much better outcome for many people. And I've heard the testimony of many who have been cured this way.
This is truly diametrically opposed to the approach of conventional treatments which must focus on a very narrow "disease" definition. In my limited understanding, it seems that VIT C works on many infectious agents not by attacking the microorganism itself but by introducing a powerful anti-oxidant agent into the tissues of the body which selectively makes it harder for cancer cells to survive and leads to apoptosis of many types of cancer cells. Yes, I'm sure that intravenous C is that much more powerful, but I've already witnessed the effects of reasonably high dose Ascorbic acid for myself on my sinus infections so I know the mechanism works in a very real way, orally, for some things like sinusitis and I suspect for colds and flu. I'll find out this winter!
I have had sinus congestion since Wednesday and am not able to get up and move about very much. I have watched Christmas movies on Hallmark lol. My head hurts when I look down. So congested. Went to th e pcp for my annual physical Friday and he checked me out. Told me to run a humidifier,use Flonase ,hot showers for steam,nettipot. Tried to explain to him my sinuses are very bad and would he give me an antibiotic. Told me to do what he told me to do and I would be fine. I’m also an asthmatic and when I get a sinus flare up I go into full blown serious problems. This is the first time in years I can say I didn’t go this route. Have been on imbruvica since August 2017 and numbers are good and feeling fantastic. This may be why sinus infection played out well this time. have done all of this ,started Friday at noon time. Still no relief at 8:00pm on Saturday. I finally called Diplomat Pharmacy were I get my imbruvica. Asked them what I could take over the counter and was told I could take Sudafed sinus or mucinex sinus. I had mucinex with guafsinsin , expectorant on hand and decided to take it. Took only two doses and Right now I can move my head without pain with a little drainage. Will be seeing my pcp because we have an appointment for my husbands physical Monday and am prepared to ask him why he refused an antibiotic when he knows my sinus problem and he has been caring for me for 30 yrs. mucinex and Sudafed will definitely been on hand at all times. 🤪
Wishing everyone good health prayers out to all 🙏🙏🙏🙏❤️
An update on my visit with Dr. Sulica at the Sean Parker Institute for the Voice re: my loss of upper vocal register. According to Dr. Sulica, and I'll use his words: "I believe his voice
problem results principally from a mild neuropathy of the right vocal fold. I suspect this is
related to his recent enlarged cervical lymphadenopathy impinging on the recurrent laryngeal
nerve. I explained that the condition has some potential for spontaneous recovery especially if
the lymphadenopathy has receded.
btw - Dr. Sulica is great and I am most grateful to everyone who recommended him to me. I would do the same.
Now here's some additional very good news to report: I've gotten back a good deal of my upper register. I have about 6-7 more notes than I had before I started the holistic approach that I started about 6 weeks ago. So I hope there's some hope there for all of us.
I have had chronic sinus issues over the last year and just assumed it was allergies... (both my mom and older sister experienced increased allergies beginning in their forties... and have autoimmune issues (different from me)) I hadn’t considered it could be related to CLL... that’s an interesting correlation to be considered...
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