LymeNet Flash: Chemo for lyme????????

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Posted by tdtid (Member # 10276) on :

I was at the dentist getting my teeth cleaned today and since they ask about meds and I was talking lyme, the hygensist proceeds to tell me that she knows a man that was undiagnosed for ten years, on abx for six and was not getting better.

So he found a local hospital that would do experimental treatments for him and one was chemo. She CLAIMS he's actually doing better than he ever was.

Anyone ever hear of such a thing. Obviously this would be a last resort type effort, but wondered if anyone was familar with this.

Cathy

Posted by Karl1 (Member # 10922) on :

Cathy,

I don't have any stories of success with this, but chemo simply ruins your body, immune system, etc., and who knows how much of the Lyme it can really erradicate. It may be in "remission" til it can rebuild??

I've seen 16 doctors and 4 neuros that all wanted to have me do the majors...IVIG, plasma exchange, chemo, etc.. Instinctually, I turned them all down each time, knowing we can treat this majorly with MUCH less risk/invasiveness.

Yes, perhaps a last resort, but I personally wouldn't do it. My humble opinion.

I would question the abx protocol he was on and the schedule he used for them. I would also question if he is dealing with co-infections with the Lyme. You can't afford to take breaks between abx or if symptoms go away and you think you're better prior to 1-2 years

and you need to change them up roughly every 2 months or when you no longer have reactions to them, then change to new ones.

The protocol we are using pushes for 3-5 years and then boosters/pulsing for a lifetime when/if symptoms come again...etc.. It's also key to be taking high dose vitamin supplements....

All much easier and better for one's body than chemo.

Best Regards,
Karl

Posted by tickedntx (Member # 5660) on :

One thought: if chemo destroys the immune system, perhaps this guy feels better because his immune system is not responding. The infection may, in the meantime, still be raging.

I have absolutely no idea if this could be happening; just a thought.

Posted by Parisa (Member # 10526) on :

Chemotherapy hand-me-down drugs are the old standbys used by rheumatologists for all of the autoimmune diseases which as we know are many times caused by infection.

My husband has pulmonary fibrosis with his autoimmune disease dermatomyositis or could that be mixed connective tissue disease, etc.

We finally got a positive for lyme on his WB last October. However, he had already started chemo for his lungs.

His antibiotic protocol (AP) rheumatologist wanted him to continue the chemo. There is a study showing some people with scleroderma (another rheumatic disease that also responds to antibiotics) who have pulmonary fibrosis have some clearing of the lungs with the chemo.

Some of the AP rheumies think that when the inflammation is extensive the antibiotics will not penetrate if you don't use some of these more toxic drugs in conjunction with the antibiotics.

Also, sometimes when you have liver or lung damage you have to "save" that organ first as unfortunately antibiotics don't always work fast enough.

My husband is in his third month of chemo (Cytoxan). He is making improvement but he has also been on doxy since October, artemisinin since December and just recently added in zithro.

I wish I could say it was purely antibiotics which has gotten him this far. I can't since he has had mixed treatment.

If the chemo isn't helping I can only hope we can get through the remaining three months without too much damage.

This has been an agonizing decision for us. Unfortunately we don't have a crystal ball and can't foretell what is going to happen.

I personally probably wouldn't have gone for the chemo but on the other hand I also don't live in my husband's body. I haven't gone from a half marathon runner to someone who barely has enough breath to climb stairs.

Posted by Lymetoo (Member # 743) on :

I personally wouldn't do it either, but I have heard of cancer patients who had Lyme, becoming free of both diseases with chemo.

Now, what I don't know is whether or not the Lyme or cancer will [or did] come back later on.

I WAS given methotrexate by a rheumie many years before I was dxd with Lyme. Didn't work for me.

Posted by bettyg (Member # 6147) on :

parisa, best wishes to your husband who's taking chemo for his lyme/other problems!

please keep us informed how he's doing. thoughts/prayers headed your way! [group hug]

Posted by Parisa (Member # 10526) on :

Thanks for your kind thoughts.

My husband's LLMD thinks the lung problems were probably brought on by babesia. Hopefully, the cytoxan is as toxic to babesia and lyme as it is to the other cells of the body.

Also, this is a lower dose than traditionally given to cancer patients. Something we have had to remind the oncologist when he starts talking about ramping up the meds.

Posted by SForsgren (Member # 7686) on :

I have heard of low dose chemo with IPT (insulin potentiated therapy) for Lyme as well - and yes, some of the people I heard about did seem to improve with it.... Hmm...

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by SForsgren:
I have heard of low dose chemo with IPT (insulin potentiated therapy) for Lyme as well - and yes, some of the people I heard about did seem to improve with it.... Hmm...

That can be very dangerous if not handled by an expert.

Posted by Parisa (Member # 10526) on :

Lymetoo is right. This is definitely not something to take lightly.

We are weighing the risks of potential cancers in the future and/other side effects over a possible 2-5 year life expectancy if the progression of the pulmonary fibrosis isn't stopped.

Posted by tdtid (Member # 10276) on :

I hope no one thought I was recommending this. I was basically just passing on "here say" about someone that says they knew someone and I was curious to get some feedback on this.

But I'm only two months into treatment, so I definitely wasn't going to jump. It was more just looking for more educational info on a topic I wasn't sure about. Thank you to all that responded.

Cathy

Posted by Melanie Reber (Member # 3707) on :

Good evening Parisa,

Someone sent this link to me, so excuse me Cathy for jumping in here.

I, and a few others, have recently completed a boatload of research on the ACA-Scleroderma- Borrelia connection and the suggested protocols associated with their conditions.

I am certain that you and your doc and Hubby have done this research as well, but I just wanted you to know that IF you are interested in what we have gathered, I would be more than happy to share any notes with you.

Mainstream studies have been sorely lacking in making this connection, but there are studies and doctors that have dealt with patients who are recovering from ACA- Scleroderma, and their devastating effects, on low-dose less invasive meds.

You can contact me if you would like at the email listed below.

My very best to you and yours,
Melanie

Posted by lymesblue (Member # 3550) on :

I am currently doing chemo for breast cancer and I do have chronic lyme. I am doing cytoxin, taxotere, and herceptin.

Doing research before beginning treatment I spoke with a MD who had just presented his findings of treating herceptin to lyme patients. They are getting well and continue on with herceptin after their course for cancer is completed. Herceptin is a low dose chemo. It is a monoclonal antibody. Antibodies are part of the body's normal defense against bacteria, viruses and abnormal cells such as cancer cells.

Also, IPT Therapy, (Insuline Potentiated Therapy) targets only the cancer cells and is less invasive than just doing chemo.

Posted by tory2457 (Member # 10384) on :

Hi Lymesblue,

I'm still rather new to lyme disease, but I have a nagging question.

What is or are your CD57 levels and CD8/CD57? and Immune Complexes?

My question is because mine are very low, and I just read the post of Lyme/Lymphoma?

I realize my question might be very far off...but thought I'd give it a try!

The best to you,
Tory

Posted by Marnie (Member # 773) on :

Tamoxifen maybe.

Bb has a PKC inhibitor. Tamoxifen is a man-made PKC inhibitor.

It is possible one can "downregulate" another.

There are MANY PKC inhibitors in our body. These trigger cell death.

Posted by gambler (Member # 8441) on :

I know you all are talking about Cancer Chemotherapy, and I know you all know that's what you are talking about, and this is off the point, but you guys always correct people who write "Lymes"...

If you are taking abx you are using Chemotherapy for Lyme. Chemo is chemical and so the headline Chemo for Lyme???, is like saying Abx for Lyme??? --incredulously.

Most everyone here is on Chemotherapy.

gambler

Posted by tdtid (Member # 10276) on :

Gambler,

While you are samantically correct, chemotherapy is generally associated with cancer treatment in todays vernacular.

That is, although the word does mean a treatment with chemicals, more specifically it currently refers to those specific chemicals used to treat cancer.

Thank you for your comments. The interesting aspect of this post is the use of cancer fighting chemicals to treat Lyme Disease, which I'd never heard of.

Cathy

Posted by Dave6002 (Member # 9064) on :

The design of chemotherapeutics for killing cancer cells is based on that cancer cells proliferate more rapidly than normal cells.

In another words chemotherapeutics kill proliferating cells including normal cells (that's why chemos have severe side effects) but not rest cells.

Chemos are specifically targeting eukaryotic cell components required for cell proliferation.

So chemo may not be able to directly target prokaryotic cells like Bb and coinfections, which are totally different from eukaryotic cells like our cells.

Posted by NanceRI (Member # 10946) on :

Lymesblue,

I too am in treatment for breast cancer and have a diagnosis of Lyme for many years.

While I was treated with chemotherapy (Adriamycin,Cytoxan,Taxol) my Lyme symptoms were almost nonexistent.
However, after surgery on Nov.30, the Lyme symptoms returned with a vengeance. I now have excrutiating pain in my joints and muscles.

Still waiting to see my Lyme doc on Feb.6. and will speak to him about it then. The cancer docs don't pay much attention to it, as they are there for the cancer only.
I don't know if the chemo made the Lyme reimiss, but the symptoms were definetly gone for awhile.

I wouldn't recommend chemo for anybody unless it's to save one's life. It was a horrible experience for me and I'm still counting my hairs waiting for regrowth.