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Update on me and mine


momaine

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Hi,

I don't come on the forum as much as I used to but I wanted to let you know how my dd and I are doing. You guys have been a life line over the last couple of years.

 

My daughter (Lyme,Bart, PANDAS/PITAND) is plugging along in a positive direction. She is one year out from beginning Lyme/Bart treatment. She still benefits greatly from IVIG and does better initially after treatment then begins to worsen about 5 weeks after treatment. We are always ready for the next one and sometimes wish she had them more frequently. Travel and money would make that extremely difficult though. I feel confident we are moving in the right direction but healing is slower than I would like. She is a busy girl these days, training her young horse, working a job at a pizza store, busy with friends.

 

My own treatment for Lyme/bart has been very successful. I'd say I'm 95% better. I have no heel pain (occasional two second pain goes through maybe once a month), only have a couple nerve pains when I take my flagyl (up to 3 days now), rarely have muscle pain or joint pain. My brain fog, with the help of Cholestyramine is mostly gone. I'm not sure if I even need it every day anymore but I've been a little afraid to stop thinking this just might be a good cycle. (but I only take it once a day now and not twice)

 

Now the bad news; I was just diagnosed with breast cancer and I have a long road ahead of me with that. I'm going for a double mastectomy next Friday. FAcing a year of chemo. Time off from work that I couldn't afford before the cancer diagnosis. Feeling like we've already had our share of difficulties and wondering why me? BUT, mostly feel like if I made it through the last few years with my daughter's illnesses that cancer treatment will be a breeze in comparison.

 

taking one day at a time.

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Hi,

I don't come on the forum as much as I used to but I wanted to let you know how my dd and I are doing. You guys have been a life line over the last couple of years.

 

My daughter (Lyme,Bart, PANDAS/PITAND) is plugging along in a positive direction. She is one year out from beginning Lyme/Bart treatment. She still benefits greatly from IVIG and does better initially after treatment then begins to worsen about 5 weeks after treatment. We are always ready for the next one and sometimes wish she had them more frequently. Travel and money would make that extremely difficult though. I feel confident we are moving in the right direction but healing is slower than I would like. She is a busy girl these days, training her young horse, working a job at a pizza store, busy with friends.

 

My own treatment for Lyme/bart has been very successful. I'd say I'm 95% better. I have no heel pain (occasional two second pain goes through maybe once a month), only have a couple nerve pains when I take my flagyl (up to 3 days now), rarely have muscle pain or joint pain. My brain fog, with the help of Cholestyramine is mostly gone. I'm not sure if I even need it every day anymore but I've been a little afraid to stop thinking this just might be a good cycle. (but I only take it once a day now and not twice)

 

Now the bad news; I was just diagnosed with breast cancer and I have a long road ahead of me with that. I'm going for a double mastectomy next Friday. FAcing a year of chemo. Time off from work that I couldn't afford before the cancer diagnosis. Feeling like we've already had our share of difficulties and wondering why me? BUT, mostly feel like if I made it through the last few years with my daughter's illnesses that cancer treatment will be a breeze in comparison.

 

taking one day at a time.

 

 

I'll keep prayers and good thoughts going your way. I'm so glad for the positive update for you and dd.

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Hi,

I don't come on the forum as much as I used to but I wanted to let you know how my dd and I are doing. You guys have been a life line over the last couple of years.

 

My daughter (Lyme,Bart, PANDAS/PITAND) is plugging along in a positive direction. She is one year out from beginning Lyme/Bart treatment. She still benefits greatly from IVIG and does better initially after treatment then begins to worsen about 5 weeks after treatment. We are always ready for the next one and sometimes wish she had them more frequently. Travel and money would make that extremely difficult though. I feel confident we are moving in the right direction but healing is slower than I would like. She is a busy girl these days, training her young horse, working a job at a pizza store, busy with friends.

 

My own treatment for Lyme/bart has been very successful. I'd say I'm 95% better. I have no heel pain (occasional two second pain goes through maybe once a month), only have a couple nerve pains when I take my flagyl (up to 3 days now), rarely have muscle pain or joint pain. My brain fog, with the help of Cholestyramine is mostly gone. I'm not sure if I even need it every day anymore but I've been a little afraid to stop thinking this just might be a good cycle. (but I only take it once a day now and not twice)

 

Now the bad news; I was just diagnosed with breast cancer and I have a long road ahead of me with that. I'm going for a double mastectomy next Friday. FAcing a year of chemo. Time off from work that I couldn't afford before the cancer diagnosis. Feeling like we've already had our share of difficulties and wondering why me? BUT, mostly feel like if I made it through the last few years with my daughter's illnesses that cancer treatment will be a breeze in comparison.

 

taking one day at a time.

I am so sorry to hear about your diagnosis! My llmd is an integrative doctor who has treated cancer holistically for 35 years. He knows how to heal the body (take the bad stuff out and put the good stuff in is the theme). There are some really great non toxic things you can do like IV vitamin c (which kills cancer), IV alpha lipoic acid, and taking low dose naltrexone (LDN). Many lyme patients take LDN. LDN is cheap and powerful. Its considered a miracle drug for cancer, ms, lyme, etc. I have taken it ever since I did my lyme treatment. I just read Connie Strasheim's Defeating Cancer and it is a wealth of info. I was struck by how many doctors in the book discuss the psychology of healing and how subconscious thoughts can sabotage your health. One doctor discusses Psyche K which is like speed therapy. They muscle test you for any subconscious beliefs that are related to the problem and help you release it. Its quick and powerful. I have been doing a ton of reading because my dear Aunt just got diagnosed with lung cancer after having had breast cancer years ago.She came to see my integrative doctor for advice and continues to use him as an adviser long distance. She wishes she had not done chemo and radiation and had gone the holistic route years ago. She would have learned that she can't detox and that she has high heavy metals and could have started detoxing. She is doing well considering and looks great four months into her treatment. She had a repeat scan of her lungs and the cancer had not progressed which was amazing news. Most of all she is enjoying her family and is not feeling sick b/c of chemo. Suzanne Somer's book Knockout is also very good and so is Beating Cancer with Nutrition (both recommended by my doctor). Genova Diagnostics offers a test called DetoxiGenomic profile and it tells you if you have any genetic blocks to detoxing. One holistic cancer doctor told my Aunt that it is a very important test to get whether you have cancer or want to prevent getting cancer. Seems to be a theme in lyme and cancer-the inability to detox can make you sick. Infrared sauna treatments, colonics etc. are also highly recommended by most of these doctors. Biofeedback machines like ondamed or Assyra (sp?) can be helpful in identifying what the body needs and balancing it. Also I have read repeatedly that it is important to have cancer surgery during the time of your cycle when progesterine (sp?) is high b/c progesterine is protective and aids in aptosis or natural cell death of cancer cells. Cancer cells are less likely to spread at that time of the month. I think its towards the second half of your cycle that your progesterine is high. Suzanne Somers' book mentions this I think. These holistic doctors in Defeating Cancer say that it is much easier to treat cancer holistically if the patient has never had chemo or radiation b/c those things undermine the body's ability to heal itself. They routinely see people with stage 3 or 4 cancer go into full remission so keep that in mind and think positively! Good luck!

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Thanks to everyone for their well wishes. Lyme Mom, you are a wealth of information. You never cease to amaze me. I appreciate all you have written and I'm reading alternative stuff and looking into it, but mostly I'm afraid and knowing that my breast cancer is an aggressive form, am leaning toward traditional therapies. I plan on talking to my LLMD about alternatives too but I'll probably do that in addition to traditional therapies.

 

So much to learn, so little time. After all the PANDAS/Pitand, and then Lyme stuff, I was ready to not have to learn anything else medical for a good long while. My brain is on over load.

 

I'm just so glad that the lyme is mostly under control before I begin cancer treatment.

 

Angela

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Thanks to everyone for their well wishes. Lyme Mom, you are a wealth of information. You never cease to amaze me. I appreciate all you have written and I'm reading alternative stuff and looking into it, but mostly I'm afraid and knowing that my breast cancer is an aggressive form, am leaning toward traditional therapies. I plan on talking to my LLMD about alternatives too but I'll probably do that in addition to traditional therapies.

 

So much to learn, so little time. After all the PANDAS/Pitand, and then LyIme Istuff, I was ready to not have to learn anything else medical for a good long while. My brain is on over load.

 

I'm just so glad that the lyme is mostly under control before I begin cancer treatment.

 

 

 

Angela

Good luck Angela. I know you can heal your cancer. When I read your post i remembered that a woman I met last year told me she was in a breast cancer study about breast cancer and Lyme. She said there was a connection which is not something Lyme patients want to have to wor

Edited by lyme mom
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Good luck Angela. I know you can heal your cancer. When I read your post i remembered that a woman I met last year told me she was in a breast cancer study about breast cancer and Lyme. She said there was a connection which is not something Lyme patients want to have to wor

 

 

That is interesting, because I joined a breast cancer list and told my story and someone responded right off that they knew someone else who was diagnosed with BC when they were mostly healed from Lyme. Does make me wonder. She did say that the person did not regress with their lyme symptoms during cancer treatment but after chemo was over, they had a brief worsening. I'm just hoping that before my chemo starts that I have this lyme bug kicked. Had a foggier day than I have had in a couple weeks yesterday, but that is what lyme does in my life, cycles, and just when I think I'm better, I have a bit of a setback. I know I'll kick its ######, but it can't be soon enough.

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Good luck Angela. I know you can heal your cancer. When I read your post i remembered that a woman I met last year told me she was in a breast cancer study about breast cancer and Lyme. She said there was a connection which is not something Lyme patients want to have to wor

 

 

That is interesting, because I joined a breast cancer list and told my story and someone responded right off that they knew someone else who was diagnosed with BC when they were mostly healed from Lyme. Does make me wonder. She did say that the person did not regress with their lyme symptoms during cancer treatment but after chemo was over, they had a brief worsening. I'm just hoping that before my chemo starts that I have this lyme bug kicked. Had a foggier day than I have had in a couple weeks yesterday, but that is what lyme does in my life, cycles, and just when I think I'm better, I have a bit of a setback. I know I'll kick its ######, but it can't be soon enough.

 

That is interesting and kind of scary. I wonder how many cancer patients have underlying infections like lyme and don't know it. Keep us posted. We r praying for you.

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I'm so very sorry to hear about your breast cancer diagnosis. I hope the surgery goes smoothly and recovery is quick. A friend of mine mentioned a link between cancer and Lyme the other day, but I've never read anything about that. Has your LLMD mentioned it?

 

Also, so glad to hear your daughter is making forward progress. I know what you mean about it being too slow, but any step forward is a huge accomplishment!

 

Take care and good luck with the surgery on Friday.

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I am so sorry to hear of your diagnosis of breast cancer. Good luck with your treatment. You can beat it! I hope the lyme does not complicate things too much.

 

I am glad to hear how things are going well on the lyme front though. Thanks for keeping us updated. Thinking of you guys.

 

Susan

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I am not on the forum much either. We are making progress in our Lyme treatment. I do think about you and L. often. I am glad to hear everyone is healing. I am sorry to hear your diagnosis. But I am sure you will have a plan on treatment. Watching you at Dr. B's office always amazed me. You always had so much information and asked all the right questions. This I know will be handled the same way. We are all fighting for your remission! I must say recently I have had a questionable mammogram. I have lyme too. What is the connection?

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Best wishes on your full recovery from the cancer. A good friend of mine is going thru treatment right now. She is doing well and making plans to enjoy every day, express love to others, focus on what is good in her life. She is also looking forward to getting her new 'pillows' later this year. :) Best wishes on your treatment and recovery!

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My friend (who is going thru some of the same things as you) sent me this poem today - thought you might enjoy it:

 

May Life's Greatest Gifts

Always Be Yours

 

Happiness. Deep down within.

Serenity. With each sunrise.

Success. In each facet of your life.

Close and caring friends.

Love. That never ends.

 

Special memories. Of all the yesterdays.

A bright today. With much to be thankful for.

A path. That leads to beautiful tomorrows.

And dreams. That do their best to come true

 

Best wishes.

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