Mis diagnosed as Fibromyalgia, ME/CFS, Musculoskeletal Disease,Poly Myalgia Rheumatica - significantly improved when treated for Lyme Disease.
Perhaps more aptly described as Multi-Systemic Infectious Disease Syndrome - MSIDS.
Saturday 7 January 2023
It is with great sorrow I am writing to say that Joanne passed away on
Wednesday 28th December 2022.
With Mike by her side she left us after a two year valiant fight against
Triple Negative Breast Cancer.
Joanne was always busy creating. Be it dressmaking, knitting, jewellery making, upholstery, spinning, weaving or tending to her beautiful garden. She was an inspiration.
Her battle with Lyme disease for nearly 20 years brought her many challenges but with it many great friends. Despite her own health struggles she never stopped being an advocate for others on their difficult journey though Lyme. Even at the end of her life her efforts to help further the understanding of this dreadful disease never ceased.
Joanne will be desperately missed by Mike, Rachel, Rebecca and her 7 grandchildren.
My daily symptoms have been noticeable by inflammation just about everywhere but variable.
I have tried a variety of treatment and combination treatment over the years many helped but none cured daily symptoms.
I have had gall bladder removed, appendix removed and hospitalised with pneumonia in 2019 found to have Bronchiectasis and I developed diverticulitis in recent years.
I found a breast lump in January 2021 and had a mastectomy in February 2021( no lymph node involved) followed by a diagnosis of Triple Negative Breast Cancer. Chemo 4 x TC (Docetaxel and Cyclophosphamide ) which was grim.
I had been referred to Chest Consultant following pneumonia in 2019 because of constant coughing which had gone hand in hand with my Lyme journey. Certain antibiotics relieved symptoms most especially Bactrim/ Septra/Co-Trimoxazole call it what you like. This is medication which can be used in treating Lyme so double benefit but try getting a doctor to prescribe on NHS. Despite constant request chest consultant would not prescribe without evidence of bacterial infection and as I struggled to cough out sufficient for a sputum sample she decided to do an investigation to remove samples from my lungs. Prior to this she arranged a scan of my chest. This scan showed swollen lymph nodes in my right lung and bronchial branch entering right lung. I was referred back to Breast Consultant in view of history of TNBC. The needle biopsy wasn't sufficient to define what type of cancer I had TNBC or a different lung cancer which might be treated differently. I was referred to St Georges for a mediastinoscopy. I was given my results yesterday and it is a Triple Negative Breast Cancer metastasis.
One of the first things I read about TNBC metastasis was even with treatment prognosis was not much more than a year and without treatment maybe 3 months.
Everyone who has seen me in the NHS has been lovely but it took from December 2021 until June 2022 6 months to be referred for chemo therapy - unacceptable.
I am waiting to hear what Oncology will offer but I know there are no good treatments for TNBC.
I joined a Facebook group Triple Negative Warriors UK which is a lovely group of ladies sharing their journeys and treatments, but so very sad to hear so many young mums struggling to survive this dreadful cancer. At 72 I am lucky to have had a good life.
19 years struggling with inflammation so no real surprise to end up with cancer, but I was aware of research Eva Sapi was involved with:-
Effect of Invasion of Borrelia burgdorferi in Normal and Neoplastic Mammary Epithelial Cells
Borrelia burgdorferi, the causative agent of Lyme Disease, is known to be able to disseminate and colonize various organs and tissues of its hosts, which is very crucial for its pathogenicity and survival. Recent studies have shown the presence of B. burgdorferi DNA in various breast cancer tissues, in some with poor prognosis, which raises the question about whether B. burgdorferi can interact with mammary epithelial cells and could have any effect on their physiology, including tumorigenic processes. As the model in this study, we have used MCF 10A normal and MDA-MB-231 tumorigenic mammary epithelial cells and infected both cell lines with B. burgdorferi. Our immunofluorescence and confocal microscopy results showed that B. burgdorferi is capable of invading normal epithelial and breast carcinoma cell lines within 24 h; however, the infection rate for the breast carcinoma cell lines was significantly higher. While the infection of epithelial cells with B. burgdorferi did not cause any changes in cell proliferation rates, it showed a significant effect on the invasion and migratory capacity of the breast cancer cells, but not on the normal epithelial cells, as determined by Matrigel invasion and wound healing assays. We have also found that the levels of expression of several epithelial–mesenchymal transition (EMT) markers (fibronectin, vimentin, and Twist1/2) changed, with a significant increase in tissue remodeling marker (MMP-9) in MDA-MB-231 cells demonstrated by quantitative Western blot analyses. This observation further confirmed that B. burgdorferi infection can affect the in vitro migratory and invasive properties of MDA-MB-231 tumorigenic mammary epithelial cells. In summary, our results suggest that B. burgdorferi can invade breast cancer tumor cells and it can increase their tumorigenic phenotype, which urges the need for further studies on whether B. burgdorferi could have any role in breast cancer development.
In 2020 I had a sputum sample examined privately by dark field microscopy. This has revealed the presence of an unknown species of spirochaetes, which could be Treponema denticola but in view of Borrelia infection raises questions - of course the NHS will not investigate this.
Today I had an Oncology appointment. It went well much better than I had expected.
I expressed my concern that it had taken 6 months to this appointment. The Oncologist explained that the three areas in my lung seen on my scan were tiny and Oncologist and Breast Consultant had not expected them to be triple negative so were surprised when the biopsy results came back positive. Although TNBC is an aggressive cancer and I am now classed as stage 4 because it has metastasised to my lung, he believes my prognosis is likely to be at least a year and probably much longer if I respond to chemotherapy. He suggests oral Capecitabine but I need to have a blood test to check if it is suitable for me.
The tissue from the biopsy from the lung is being tested for PDL-1 marker but because the area was small the Oncologist has already asked for samples from my original breast tumour to be sent for testing so that there is a better chance of getting enough tissue for the best results.
If the markers come back positive I could be given immunotherapy as well as chemotherapy probably atezolizumabwhich is now available on NHS when PDL-1 markers are positive.
So I see the Oncologist again in two weeks by which time the results should be back. If the results are negative then immunotherapy would not be available unless under a trial. There are none currently at Guildford. London is not practical travelling distance in my current health situation although The Royal Marsden may be worth checking again.
I am led to understand that immunotherapy can benefit those of us with chronic Lyme but as different ones work differently it would be stabbing in the dark, but then isn't all Lyme treatment a bit like that anyway.
Update 13 July
I saw my oncologist today.
PDL-1 markers came back positive which means I would be eligible for immunotherapy drugs on NHS - Atezolizumab or Pembrolizumab.
I need another PET scan as the last one was in March and also an MRI of head. These will be done in the next few days and will serve as a base line to assess if treatment is working.
I will need a PICC Line fitted because of the frequency of IV treatment.
I see my Oncologist again in two weeks by which time the results will be back and I will start treatment soon afterwards. Atezolizumab + Abraxane ( nab- paclitaxel)
Both drugs come with nasty side effects so fingers crossed I can tolerate them and they work. If I am unable to take either of the immunotherapy drugs then a future option would be capecitabine as the DPD marker came back ok.
Meanwhile I developed high blood pressure although currently under control on amlodipine.
I am very pleased to have the opportunity to try the immunotherapy.
All being well I start treatment above on 29 July.
Alliance Medical completely messed up arranging scans which resulted in a trip to Marylebone London to get Pet scan done in time to start treatment. So much for outsourcing NHS. I sent a strongly worded e mail to BCN because 81 year old husband could not drive neither could either daughter and the prospects of travelling by train at 72 with mBCN and dizzy spells was daunting. The hospital arranged for a taxi for me which was such a relief.
Update 28/7/22
Oncologist rang today to update me on scan results.
Surprisingly Pet scan shows areas in my lungs have reduced since last scan in March, that is without treatment so he believes it could be my immune system dealing with it although I wonder if it is aspirin I take and maybe Bactrim but we will never know.
Unfortunately the MRI Head scan shows I have a lesion in the center area of my brain which he has to take is associated to mTNBC. With my Lyme hat on I wonder if it could be Lyme related and asked if the lesion was similar to what would be found in MS patients (knowing MS lesions and Lyme lesions were indistinguishable.) He said not. Because of the position of this he did not think it would be cause of my recent dizzy spells or ear problems which I had been hoping could be underlying cause of dizziness. He asked about headaches which I have been getting pressure type headaches a bit like sinus headache which improves enormously on aspirin although I had stopped that prior to scans. He said that when I start treatment the headaches would likely get worse so I might need to take paracetamol or other things but ok to take aspirin on chemo if it helps. In three months they will repeat scans and if treatment hasn't reduced the brain lesion he will refer me to The Royal Marsden to consider Cyberknife plus there are other treatment choices as mentioned above.
Rather an interesting case study just wish it wasn't mine.
Update 04/09/22 What a roller coaster this is turning into.
I started Abraxane plus Atezolizumab 1st cycle on 5/8,12/8,19/8
Admitted to hospital 23.08.22 due to much worsening balance mobility issues under observation investigation CT scan and MRI head scan.
The indication is that the immunotherapy is working because the cancer cells within the brain lesion are less but within the component is a cyst ( fluid filled sac) plus outside the lesion is an odema- inflammation. This is the likely cause of deteriorating symptoms and will be managed with Dexamethasone. I was discharged 25.08.22 to await report from MDT meeting Friday 26.08.22 about SRS - Cyberknife.
Cyberknife not suitable as it won't remove Cyst area. So another week delay for further Neurosurgery MDT as that could remove lesion with cystic area.
02.09.22 Neurosurgeon refuses surgery based on his opinion that I will have further Matisses so a waste of time - basically he says I'm stuffed anyway. Oncologist utterly furious because he can see that the immunotherapy is working (this chemo doesn't penetrate brain so it has to be immuno reducing cancer cells.)
Best plan would be to remove lesion with neurosurgery and resume immunotherapy with chemo. Such inter-speciality disagreements happen as we Lyme patients know too well.
So my alternative is to start cycle two of treatment keep monitoring sympoms using scans as required. If dexamethasone can keep odema down and symptoms, Immunotherapy should reduce cancer cells and Cyst component could be drained as and when. I start treatment again on 09.09.22 this having caused a weeks delay.
Friends with similar experience of the benefits of this operation are encouraging me to see if I can get a second Neurosurgeon opinion maybe UCLhospital London.
Onc not in this week so have sent a request as don't know if it is even possible. I do not want a different Onc - herefore renamed by my good friend J as the Fantastic Dr K. I have every confidence he will fight my corner as best he can.
I believe if I get the surgery it will give me the best chance for forward quality of life with the benefit of immunotherapy and chemotherapy.
THe MRI scan report was sobering because in 4 weeks the lesion had grown c50%in length and width but importantly cancer cells shrinking it is the cystic fluid which has increased.
So yet another battle on my hands but life is full of twists and turns, I am now enjoying my bed downstairs and use of downstairs shower room originally built when incapacitated with Lyme. Mike has been amazingly supportive - the best.
Lots of family visits and home prepared food parcels.
Plus making the most of educating doctors in Lyme.
Wish me luck. x
Update 13.09.22
I contacted Dr Eva Sapi to ask if she could investigate breast cancer tumour unfortunately she can't because it is an Academic lab not a clinical lab.
I now have the report on why Neuro surgery was refused.
Solitary Lesion.
MDT discussion and follow up treatment plan
Surgical cyst drainage is an option but close to critical neural structures,
therefore not resectable.
MDT recommeds whole brain radiotherapy and close follow up.
I started Atezolizumab plus Abraxane on. 09.09.22 so far so good, only mild tolerable symtoms of headache and upset stomach.
I think the Dexamethasone is helping reduce brain Odema because the last trip for chemo felt much more comfortable traveling in the car, for the last few weeks my head felt my brain was swishing around as we went over any tiny bump or dip or turn in the road stop or start. Fingers crossed it is dex helping although the insomnia is tiring.
I have entertained myself during the midnight hours of what I believe are Dexamethasone insomnia with watching Dr Neil Spector's presentation on a collaborative project with Dr Ed Breitschwerdt, Dr Tim Haystead and Monica Embers. If successfully brought to an anticipated conclusion it won't just change the landscape of Lyme Borreliosis but no doubt many other chronic Diseases which may be caused by Lyme.
I was particularly intrigued with the use of Verteporfin immunotherapy especially as a quick search shows that it is showing promise in treating TNBC and Glioblastoma (suggestive to me that it might help other brain cancers.) It is another pdl-1 immunotherapy drug.
Talking about Glioblastomas I have also been listening to this fascinating interview with Dr Alan MacDonald. In which he covers the following important topics.
Lewy body Dementia He has found Lewy body neurons containing Borrelia Burgdorferi + Borrelia Miyamotoi double infection.
Bloodstream Borrelia spirochetes are coated with Borrelia antibodies.
Borrelia Hepatitis caused by dual infection Miyamitoi and Burgdorferi
Chronic Lymphocitic Leukaemia single case demonstrates Borrelia spirochetes inside Leukemic cells in blood.
Dr MacDonald provides his services free. He struggles to get his work published because of the cost of publishing so has set up a Go fund me pageto help finance publishing his work
I can't think of a more worthwhile cause. Every one of us will have somone we love impacted by these diseases where Dr MacDonald has found links to Borrelia ( not every case clearly but some cases in every disease maybe and certainly in a number of cancers.
Other researchers who later found Borrelia in Alzheimer brains
Judith Miklossy - found Borrelia in Alzheimer brains but also found dental spirochetes in Alzheimer brains and assisted Lancashire university dental college with their research. Miklossy has several published papers. her website https://miklossy.ch/
Herbert B Allen presented at our last Symposium about Spirochetes and Alzheimer's. I don't have that presentation to hand but found this interesting interview https://www.youtube.com/watch?v=Mr17woXH5Ec
Monica Embers recently published -
"Detecting Borrelia Spirochetes: A Case Study With Validation Among Autopsy Specimens."
Overall good news. Which is a bit rare with this journey.
The MRI head shows
1. The odema next to brain lesion has reduced with Dexamethasone. I must continue on 6mg a day.
2. The solid part of the brain lesion has reduced to virtually nothing - which I understand are the cancer cells. This is attributed to Atezolizumab which penetrates the brain ( Abraxane chemo does not)
3. The brain lession has again increased in size, the first four weeks it increased by 50% but I don't have the details this time yet. However this increase is in the cystic fluid part of the lession.
4. As previously discussed with me and previously Neurosurgeon at St Georges Tooting he will this evening refer me to St. Georges to drain the cystic fluid. ( previously they were unable to do brain surgery because it was too close to critical neural structures and suggested managing it by draining the fluid - hopefully they can avoid these for a drain.
5. I must stop Aspirin at least a week before surgery.
6. I will start my 3rd cycle 1st week of Abraxane/Atezolizumab on Friday. But it will be interrupted by surgery date and then resumed after surgery.
7. After Cycle 3 is completed I will also have a Pet scan to check out what is happening in my mediastinum (lung lymph nodes ) Before chemo/Immunotherapy these had appeared to reduce, so Oncologist was not unduly concerned about them.
8. Dr MacDonald has offerred to investigate Cystic fluid re Borrelia if I can send him a sample, Oncologist was ok with that but I need to discuss with and when I speak to Neurosugeon. They will of course do their own investigations which will not include Borrelia even if they do deep sequencing as it won't be properly primed.
9. Most importantly I was able to discuss my interest in finding a way to access Verterporfin.
a. It is a PDL1 immunotherapy drug not one that NHS would use for TNBC metasteses
b. there was a good study of its effectiveness for TNBC done by Royal Free.
c. There was a clinical Trial at Massachusetts hospital but not sure if accessible or ongoing.
d. There is another clinical trial to treat Glioblastoma - suggestive it could be beneficial to treat brain lesion.
e. Costs £1,000 a shot as opposed compared to £12000 Atezolizumab per coarse + other costs.
f. Verterporfin is absorbed by Borrelia which I have and Borrelia is then killed by oxygen produced with light therapy.
He promised to look into it but not holding my breath. I recognise that Cancer shape shifts and morphs so Atezolizumab may not always be my magic, but I have good reason to think Verterporfin could be. Especially watching De Neil Spector's video presentation. posted previously in this post.
Feeling positive.
Update 23.10.22
The report from MRI head scan 3.10.22
Says slight increase in the size of the lesion due to an increase in the cystic fluid portion.
On Wednesday 19.10.22 I reported to Oncologist a detertioration in my left foot leg and left hand coordination problems.
On Thursday further deteriration of a sort of internal chore balance/jittery feeling so that either sitting or standing is difficult to fully balance with this feeling. I believe this was relared to my two previous falls.
I had another fall due to this on Thursday evening 20.10.22
What a disaster. I lifted a cold chip pan fryer ( I don't touch hot pans Mike deals with them) from a cupboard walked two steps lost balance threw the fryer in the air bumped head on stair side, fell to bottom with a bump only to sit in cold oil as it gradually spread across the kitchen floor soaking into my trousers socks sandall etc.
Trying to get upright again was problematic even with the good old chair method and Mike - hilarious really as we slid aeound in oil. But at last I was upright, showered and dressed and poor Mike spent all evening soaking up cold oil and disposing of a broken chip fryer.
I reported the deterioration and fall to Oncology nurses and was advised by oncologist to increase Dexamethasone to 8 mg until I see Neurosurgeon.
I have an appointment on Monday 24.10.22 to see Neurosurgeon to discuss draining cystic fluid from brain. I will be admitted Tuesday evening, ready for surgery Wednesday 26.10.22
Can't come soon enough.
Update 21.11.22
The cystic brain fluid was removed by the Neurosurgeon and samples were sent to Dr Alan MacDonald for analysis.
Dr MacDonald found many images showing Borrelia Burgdorferi in the cystic fluid from my metastic brain lesion caused by Triple Negative Breast cancer, above is just one image.
Tomorrow, Wednesday and Thursday I go to Chelsea Marsden to have a three day course of steriotatic/Cyberknife radiosurgery to my brain lesion. Effectively to disable the brain lesion to prevent further cancer cells or further cystic fluid entering the lesion.
The House passed a bill this month that would order the Pentagon's inspector general to investigate whether the Defense Department weaponized ticks. Stanford University science writer Kris Newby, in a new book called "Bitten," hints that such experiments may have led to Lyme disease's rapid spread. Newby says that congressional inquiry into the matter "is exactly what I wanted to happen.'' And CQ Roll Call defense writer John Donnelly explains what Congress has asked the Pentagon to do and why many experts doubt it caused the public health crisis.
House of Representatives orders Pentagon to investigate whether ticks were once used as biological weapons
(CNN)The US House of Representatives has ordered an investigation intowhether the Department of Defense experimented with ticks and other insects as biological weapons.
UNDER OUR SKIN Director Andy Abrahams Wilson interviews Kris Newby, author of "Bitten: The Secret History of Lyme Disease and Biological Weapons." May 1, 2019
– UnderOurSkin.com
From Kris Newby Senior Producer of Under our Skin. 'I’m happy to announce that my narrative nonfiction book, “BITTEN: The Secret History of Lyme Disease and Biological Weapons,” can now be pre-ordered from your favorite book retailer:https://www.harpercollins.com/9780062896278/bitten/
About 5 years ago, I received a videotaped interview of Lyme discoverer Willy Burgdorfer saying that the Lyme disease outbreak was caused by a bioweapons experiment gone wrong. It was a stunning confession given his reputation, and I knew I couldn’t walk away from it.
BITTEN takes readers on my investigation of this claim, starting with Willy’s role in weaponizing ticks, fleas, and mosquitoes for the U.S. military’s bioweapons program, and ending with evidence supporting the theory that this epidemic began around Long Island Sound in 1968 as fallout from a secret bioweapons release.'
