posted
i am on rocephin iv but i am not feeling much progress, in any at all. i am a single mom with a beautiful five year old, unable to work, and want to kick this disease's butt as quickly as possible. chemo has been suggested as a method to do this. has anyone tried this? heard of this? know anything about it, i.e., success rate, length of time for treatment, effectiveness v. iv antibiotic. fyi, i have very late stage lyme. the fatigue is stiffling, the brain fog unbelievable, and the body pain, well, i am sure you guys can relate. i HAVE to get better as soon as possible. thanks for any info on this topic.
Posts: 17 | From Northern CA | Registered: Mar 2007
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Sorry your in so much pain right now. I understand you wanting to get well as quickly as possible, but I have not heard Chemo used to treat lyme before. (not saying it wouldn't work) But it would kill your own good cells in the process.
How long have you been on IV ABX? Sometimes if your in late stage it may take awhile. Do you have all your mercury fillings removed? Chelated heavy metals or have been tested for them? This does make a difference in the healing process.
My doc says you have to get the body back to level playing ground in order to help heal itself.
Also you have to detox, get out all the toxins and die-off out of your body. And you have to watch your diet in order to feel good. No sugar, bread, yeast.... and so on.
Absolutely no chemicals in your diet these will automatically make you worse.... like Aspartame, MSG's things like that.
sorry to read you've had lyme quite awhile too but on iv! being a single mom raising a young, healthy, energetic child is hard on you/others in our large club.
have you had complete body lab testings done to rule out ALL the other stuff going on in your body contributing to your not getting better on iv, etc?
i'm going to send you my newbie's links/advise of 46 pages! when you get it, look for the area on betty's 4-26-06 1st LLMD visit to minn. this tells about my 3 hr. 1st appt. AND all TESTS DONE, and their findings in DETAIL PLUS!
this is how i learned i have food and environmental allergies:
environment ..... MOLD, basic stuff we're allergic to and had to go to ALLERGY ASSODICIATES , LaCrosse, Wisc. to be tested and they made up "INHALANT ALLERGENS" to treat my being around mold, etc.
many other things found as well.
your original question, my opinion is NO chemo! i agree with the other replier's responses why.
also, look for JAZZYGIRL post about the PUBLIC HEALTH ALERT NEWSLETTER BEING OUT!! Dawn is the editor of the MONTHLY newsletter dealing with lyme/other issues we go thru! this is a MUST READ, subscribe too. FREE TO READ ONLINE!
you can buy a BULK MAILING FOR $10.00 POSTAGE; FRE PAPERS! great to give to drs and all you are trying to educate in CHRONIC LYME DISEASE.
do you have any dealings with YOUR STATE'S ATTORNEY GENERAL? we're trying to get copies to all of them, and each state's state health insurance depts., INFECTIOUS DIVISIONS COVERING LYME DISEASE!
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posted
How long have you been on the abx? Are you seeing an LLMD? Were you tested for co-infections?
My LLMD said that I should feel somewhat better and be able to function somewhat better in a few months of treatment. He also said that treatment will take at least a year or two.
Personally, I've seen friends with cancer go through chemo. I wouldn't consider it. You would have an awful lot to rebuild in your immune system afterward.
I tend to think slow and steady is the way to go. As Lisi said, you have to be able to detox the bad stuff as the bacteria die off, which means you need a strong immune system and you don't want to kill it faster than you can detox it.
Kids are resilient. I have six, and we all sat down and talked last Sunday about how much of the load they're carrying and whether it's too much. They are all handling it fine ... they are all happy they can help me. They do all the laundry and all the cleaning.
I think they're learning a lot about compassion from this ... I hate to say it, but overall, it's probably been good for our family to be going through this.
Your patience in dealing with your illness will have a lifelong impact on your daughter. Unfortunately, there is no easy way out of this.
Just like Betty, I cannot eat gluten at all. My joint pain decreased and most of my GI troubles went away when I went gluten-free. If there are other things causing trouble, you may get more immediate relief if you address them.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
I am very doubtful personally.
Maybe there was a misunderstanding.... Chemotherapy referes to the use of chemical for therapy. IV antibiotics (and even orals) are technically regarded as chemo therapy, so your current treatment woudl be called chemotherapy. Despite this,the "chemo" term is generally used to refer to cancer treatment, I think maninly because there are som amny people that recieve it and it si usually a sogn that a grave condition exists... many dont make it after cancer "chemo".
If "chemo" was in reference to the use of a cancer chemotherapy agent, I don't think it makes a lot of sense. Most of the treatments (except for perhaps some of the very new antibody and pathway blocking ones) are based on stopping cell replicatiosn in fast dividing cells, bascially all various refinements of methotrexate. This drug slows and kills the fast replicaing cancer cells (which have a higher metbolism rate), hopefully getting rid of enough of them for the immune system to start to eliminate whats left.
In the case of lyme, it is known that it is a very slow dividing, with some speculating it can take as long as 4 weeks!. I might be wrong on this but it would seem odd than that type of treatment would work with lyme.
Do you have a co-existing or past condition that treatment has been defered that is prompting the suggestion?
Posts: 1184 | From north america | Registered: Feb 2003
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posted
- adding an oral along with the IV, or - adding diflucan, which works on both Lyme and candida - whether you have co-infections & whether you are being treated for them
i am on my second oral antib. on top of the IV, i have been taking diflucan for a long time now, and i have been tested and treated for co-infections. thanks. i have a doctor's appmt tomorrow and we will discuss further treatment. i don't have time to review past posts and have to run to an acupuncture appmt which begins in 30 minutes, but can someone please email me with the coinfections so i can make sure i have been tested for all of them. thanks. sue.
Posts: 17 | From Northern CA | Registered: Mar 2007
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bettyg
Unregistered
posted
Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-10 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
OLDIES...PLEASE RESPOND:
i'm jumping in here cuz of the "chemo" in the title
i probably don't have anything that will help
but i want to know if other "oldies" are seeing the pattrn that i am seeing...it just happened again.
patients with abnormal brain mri or other scans are being told "it might be cancer" or "it might turn into cancer" and are encouraged to use chemo experimentally-no promises it will make them better...
i know of: one who had brain surgery and was left extremely disabled,
one who had chemo and died of "a brain cancer like disease",
one who refused chemo and died 4 weeks after severe headaches and "five growths in brain" were discovered,
another who had some chemo for "possible brain cancer" and now (in my experienced opinion) acts like she has lyme...but is not open to the possibility
anyway-just wanted to know if others are ssing this trend out there...let me know-i'll start a new thread if you think i should
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
There is a specific type of chemo procedure called IPT which I have actually heard people using for Lyme disease. I am not certain that it is the chemo that benefitted, but possibly. The IPT is said to help with ABX uptake.
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