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Topic: Lyme disease/Tick-borne disease and BC

Forum: Breast Cancer with Another Diagnosis or Comorbidity — Meet others who have breast cancer but also have another health diagnosis/comorbidity such as diabetes, MS, bipolar disorder, HIV or AIDS, Parkinson's Disorder, schizophrenia, etc.

Posted on: Nov 5, 2016 04:01PM

LovesLoons wrote:

Just wondering if there are more of us out there. I had 0.7% 5-year risk for breast cancer, no family history at all. I know things happen, but I wonder if the fact I have had low-grade inflammation and poor immune status the last 8 years helped the cancer take hold.

I am 45, and I got sick with *something* around 2008 which we later found out was Lyme with probably a co-infection of Bartonella. My daughter also got it, although she showed symptoms later.

The fact that numbers are increasing (300,000+ people per year in the US alone get Lyme/TBDs), it would be a disaster if this contributed to breast cancer, or any cancer at all.

May 2017 MRI found 20ish small brain mets, biggest one in cerebellum. Whole brain radiation done for 3 weeks, triple negative, grade 3. Did AC and other chemo. Now doing Cisplatin for as long as it works and can handle it. Dx 10/4/2016, IDC, Right, 5cm, Grade 3, 1/1 nodes, ER-/PR-, HER2-
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Jul 22, 2017 08:00PM LymeGirlWithBC wrote:

I truly believe the stress on my liver killing off Lyme made my estrogen build up and caused Breast Cancer. I have ductal carcinoma in situ stage 2. No chemo so far. Had a lupectomy and will have radiation. I am 52 and they said normal estrogen is 17 for my age and I had 98. I also eat super clean, no gluten, no dairy, no preservatives, no sugar & still got breast cancer. The only proof I have is before antibiotics for Lyme my ALT was high. After antibiotics it went to normal and I do daily liver cleanses. I had to stop antibiotics 2 weeks before surgery my ALT shot way back up.

This disease is brutal and most health professionals are clueless

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Oct 14, 2017 03:02AM Faithonfire wrote:

I have had a few bouts of Lyme disease early just before my periods started and this was before much was known about long term effects of the disease or only treatment option cipro,a fluroquinone antibiotic for several months.

I have permanent peripheral neuropathy in my hands now, ptsd, and stage 3 invasive ductal carcinoma that hit my lymph system on only my left side that we just found out was estrogen positive braca 2 gene same as my mother and hers.

The most disturbing thing is that the same stage of cancer found a single generation ago was diagnosed post menapause late 60s has just struck me at age 41! 2 first cousins are currently in treatment also, awaiting genetic testing because of my diagnosis.

We are still finding out a lot and the fact that I had lymes disease when I did in my development stages of my reproductive organs has yet to be confirmed as other factors are ruled out.

There is no doubt that I suffered permanent damage from the experience but it took 16 years for the fluroquinone antibiotics study to be accepted by the medical community as legitimate and no longer misdiagnosed as a psychological issue!

I hope some of my experience helps you find some new approaches to find more information that is credible. The entomology dept is more specific than medical information on specific species that carry the virus in each region it is found in.

Best of luck to you all

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement
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Oct 14, 2017 05:31AM gb2115 wrote:

I had Lyme disease too, a few years back (about 2 years before bc diagnosis). I am not aware of any kind of correlation. Lyme sucked though. A run of Doxy cleared it (I caught it early enough and was lucky to see the tick and rash on me), but taking the Doxy sucked. Worst heartburn ever.

Dx IDC in Oct 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes, Lumpectomy + rads + tam. Age 38. 5/21 Dx IDC. 1.3 cm ER/PR+, Her2 -. Gr 2. 2/3 nodes positive. AC/T. Age 42
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Oct 15, 2017 04:15PM Faithonfire wrote:

I completely understand, harsh antibiotics for long periods of time I have found to do real damage.

I got lymes for the first time in the mid 1980 early stages of recognition of lymes disease so several misconceptions such as if you have had it once you can't get it again, don't see the rash( mine was covered by a birthmark)or pill side effects can magnify symptoms it is being used to treat, safe to use on under age 12 patients etc. caused a lot more harm than nessicary

I have heard chemotherapy kills systemic lymes virus, but have not verified that claim with my medical teams yet.

It took a long time but I beat lymes disease only to find out I'm braca 2 estrogen positive stage 3 breast cancer at age 41. Genetic testing is showing a 10 to 20 year acceleration in diagnosis of women in my family so there are many other factors to consider before we determine what role lymes disease diagnosis had in that.

Best information is independently verified from more than one credible source, but that is still only a guideline because people are human and make mistakes.

I don't blame the medical community as a whole for not having correct information, I blame them for denying information to avoid liability over their hypocratic oath!

Best of luck to you all and I will let any new information I find guide your own research on the subject, it's pretty controversial still


Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement
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Feb 2, 2018 11:35PM naps wrote:

I had a tick bite on my left side, followed by full body rash and shaking chills. Nothing diagnosed on the bloodwork/tbd panels. Then developed lymphadenopathy in region of bite and under left arm (weeks to months later.) Worked up w diagnostic mammo and u/s...thought to be reactive to tick bite? Returned to regular screening mammos. Diagnosed 5 years later at age 44 with ILC on left. Zero risk factors, no family history. Super healthy person all my life. Bolt out of the blue.

Maybe the tick bite was a coincidence, but I wonder if there could have been some kind of inflammatory cascade...just read tonight about bacterial infections possibly being implicated in colon cancer ...wish I could find someone doing research on TBD and BC.


Dx 3/2016, ILC, Left, Stage IIIA, Grade 2, ER-/PR-, HER2+ Surgery 8/10/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy Breast, Lymph nodes, Chest wall Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Chemotherapy AC Immunotherapy
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Feb 3, 2018 06:26PM LymeFighter wrote:

Hi! I was diagnosed with Lyme in October 2017 and DCIS in January 2018. No breast cancer in my sisters, mother or grandmothers. I am under the age of 40, too, and eat very clean. I have been on an autoimmune protocol diet for 2 years which excludes any inflammatory foods. This diagnosis of DCIS completely took me off guard. I spoke with someone at a holistic medical facility this week (that deals with cancer and lyme) and she said that my immune system was probably so overburdened from fighting undiagnosed Lyme the past few years that it did not have enough strength to fight cancer cells. Thought that was interesting! Very concerned about starting radiation and hormone therapy because my body is already very run down.

DCIS (1/18) ER/PR+
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May 15, 2020 07:58PM KARW41 wrote:

I just found this posting. I was diagnosed with Late stage Lyme in 2014 and Bartonella in 2016 after tick bites. Now, I have a large area of DCIS, partly resected, with bilateral mastectomy pending. I am adding this since now I truly wonder if it is connected.

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May 16, 2020 08:39AM gb2115 wrote:

I had Lyme from a bite a year or so before my diagnosis but it was caught within a couple of weeks and treated.

Dx IDC in Oct 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes, Lumpectomy + rads + tam. Age 38. 5/21 Dx IDC. 1.3 cm ER/PR+, Her2 -. Gr 2. 2/3 nodes positive. AC/T. Age 42
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May 16, 2020 07:15PM Kamboka wrote:

Interesting topic. I got Rocky Mountain Spotted Fever nine years before my cancer diagnosis. I was not treated for almost a week and had a horrible time with entire body joint inflamation. I kept thinking I had some long term effects but all my doctors said 'no'.

Dx 1/4/2019, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/7 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 3/14/2019 AC + T (Taxol) Surgery 7/8/2019 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Dx 7/9/2019, DCIS, Left, Stage 0, Grade 3 Surgery 7/23/2019 Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy 10/1/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy 11/21/2019 Femara (letrozole)
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May 17, 2020 07:47AM dono7392 wrote:

I was diagnosed and treated (60 days of antibiotics) 8 years ago for Lyme disease. At the time, I read that Lyme patients have an increased risk for cancer because of the effects on the disease and extensive abx treatment on the immune system and gut health. I told my neighbor at the time that, if I got cancer, it would be because of the Lyme disease. And now I have it.... None of my oncology doctors think there is any connection but I’m not convinced.

Surgery 10/8/2019 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 1, 2020 12:35PM lilrpet wrote:

Dear Sisters;


I have lived much of my life outdoors in tick endemic areas. I have been sick with symptoms of chronic illness for 10 years...diagnosed with different things (fibromyalgia, depression, arthritis, alopecia lfor starters) and never successfully treated, deeciding to suffer and care for myself symptom by symtpom. I am now a breast cancer patient as of Feb 2020...having had a bilateral mastectiomy on April 3 2020, and am having chemotherapy that started on May 25, 2020. I am very ill with symptoms from everything now. But I need to keep looking for help. I am certain I have had Morgrellons Disease for 6 years...and suffered at the hands of doctors calling me delusional. I stopped looking for help until recently being diagnosed with cancer i looked into the research and saw that finally there is hope ....in that people cant deny that what i and others have is a real pathology... not delusions of parisitosis, but likely Lyme Disease with a co-infection. I am working on getting test kits for diagnosis...i am gonna go to the wall and climb over it! There is definitely good research linking Lyme Disease with higher than normal rates of cancer. I was not surprised by my diagnosis when i found a lump in my breast this year. I too have eaten clean, looked after myself and been involved with complementary and wholistic care for 30 years. I was a Registerted Midwife in Ontario, until i couold not work any longer due to becoming chronically ill in 2005. There are things that may have made me more likjely to get sick with chronic tick borne illness, like being outside in tendemic areas and living in the bush, (i used to be a big gardener, and organic farmer), having terribly stressful life experiences starting in childhood, and suffering a life threatening viral encephailitis at age 5. I know i am not alone with these experiences. I am looking for others to work towards some support, and then maybe even some better care options.


BTW doctors are just people. Most dont know enough about anything other than their specific specialty, to be trusted to say anything definitively about Lyme Disease or tickborne infections. Oncologists can be great, but they rarely know much of anything past their own specific discipline. And that goes for all the rest of us too...


IMHO any doctor that is asked about Lyme Disease, and the answer they give is "No".... rather than "I dont know" ... it is a sure sign they are the wrong person to ask. We are only JUST getting research results that are showing decent information on this area... impossible for doctors out there to have known definitively much of anything before very recently.


You can also PM me if anyone is wanting to follow up on LD co-infections and BC. I am on a warpath. Though very sick with Chemo, i will try to stay on top of things now.


Blessings and Thanks,


Zoe

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