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Living with Multiple Myeloma in Hyderabad , India . Random musings .


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Update on my condition – Multiple Myeloma

Its been a while since I updated my status wrt Multiple Myeloma. Got the BMA, Electrophoresis and Microglobulin tests done about 10 days ago. The samples are  sent to a lab in Mumbai and it takes 7-10 days for the results to be declared.

Went to the counter in the hospital yesterday, where the Reports are to be collected. The person at the counter took almost half an hour to trace my reports. I was already tense for the last 10 days and the tension was mounting. The moment my Reports were found and handed to us , I quickly grabbed the papers and began scanning for the words ‘M Spike’ or ‘M Band’ . Found the words ‘No M Band is seen’ and heaved a sigh of relief. Quickly thanked the Almighty and then proceeded to meet my Oncologist. He took some time to read all the statistics on my reports and exclaimed ‘Wonderful !!” . Told me to meet after 3 months with my CBP,LFT and RFT reports .

What a relief !!

It’s been 5 years since I underwent an Autologous Stem Cell Transplant.

I sent a msg to my Ayurvedic doctor while we (Hubby and Dad) sat in the hospital canteen.

He was happy and congratulated me .He too had been eagerly waiting for my results.

I am off chemo since last 10 months and taking Ayurvedic medication for the last one and half years. All the credit goes to Dr Nitin for treating me and following up closely on my progress. While he feels that my faith in Ayurveda and following the protocol religiously is helping me. Yes ,ultimately it has to work both ways along with God’s grace  :))

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Yayy ..time to celebrate !! :)) with a cake :))

 

 

 


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My ‘Life Support System’

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I wouldn’t be treading this beautiful planet if it weren’t for some special people in my life to whom I will be forever indebted.

My Oncologist , a thorough  gentleman always positive and encouraging . When I had questions he would patiently explain in detail. Made the ASCT ( Autologous Stem Cell Transplant) process appear very simple which helped me go ahead with confidence. I completely surrendered to him He continues to support me while I try alternative therapies.
My parents who had sleepless nights and helped me recover from the terrible after effects of chemo. At times I would be so irritated with the discomfort that I would push away the glass of drink that my dad offered to me.
I am so sorry Nanna.
Love you Amma , Nanna .

Hubby makes sure I have all the medicines at all times …reminds me when I am due for the blood tests,fixes an appointment with the doctor. I don’t have to think when my next blood tests are due. Took care of me like a baby , feeding and giving medications on time when I was admitted in the hospital before and after the Transplant. His highly disciplined military style ensures that everything happens on dot 🙂  Nurses can relax  when he is around 🙂 He has been very patient all the while and continues to bear with my grumpiness till date.My son too bears with my erratic behavior .

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I am so grateful to my organisation that bore all the expenses for the Transplant.
My colleagues at work have been super accommodating. I would go to work but did not have the energy to take up any tasks…they just patiently waited for me to bounce back.Initially it was very difficult for me to sit for 10 hrs every day including travelling. No one ever made me feel that I was sick. They didn’t shun me nor avoided me, which is what I had expected. I was part of all the events and occasions. Such wonderful people they are.Once I had  bounced back I started volunteering for more assignments and now I am also made responsible for some important tasks in the organisation.

I also have good domestic help to take care of the household chores. To take care of cooking and cleaning and to drive me to work everyday. May God bless them.

I am also being taken care of by Mother nature which is nourishing me through the various leaves, seeds and roots of medicinal plants. I have also surrendered myself to my Ayurvedic doctor who is treating me with various herbs.

There are also a few good online friends who keep me going with their encouraging words.

How can I not mention the invisible spiritual guidance which is supporting me all the while. Without which I would have given up the fight long ago.

A disease like Cancer requires hell of a lot of support from all directions and from within.

How many are blessed with this kind of support system. It pains me a lot to see the suffering that people are going through and are giving up due to various reasons. A lot more has to be done quickly by  medical research. Oncologists and hospitals should treat patients with a holistic approach by including counselling sessions to the patients and  their caregivers.Alternative therapies should be a part of the treatment.

Feeling blessed.

  ~~Lokaan Samasthaan Sukhino Bhavanthu~~


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Allopathy and/or Alternative treatments for Cancer

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Depending on past experience (self or others) , nature of the disease and stage of the disease, people choose Allopathy or  Alternative treatments like Naturopathy, Acupuncture ,Homeopathy, Ayurveda etc.

When the situation is not critical , one can choose Alternative therapies. But when the patient is in a critical stage do not hesitate to go for Allopathic treatment . Get a second or third opinion.Agree Allopathy is expensive but do not take any risk at this point.

When I was first diagnosed with Multiple Myeloma , the thought of Alternative treatments didn’t arise. I was in a state of denial . I didn’t want to accept that I had cancer.I didn’t dare to type the word ‘cancer’ . We immediately took a second opinion and went ahead with Chemo followed by Autologous Stem Cell Transplant (SCT). This was in Jan 2012. It was only after 3 yrs of SCT , when my plasma cells started increasing again that I started scouring the internet for Alternative treatments. By then it was obvious that Chemo is not a permanent solution and comes with a lot of side effects.

Thankfully, I had the hope and confidence that I would find a solution and didn’t give up.

Alternative therapies can be started once Allopathic treatment, ie Chemo/ Radiation/surgery, is done and the patient is in remission. One can also take Alternative treatments simultaneously after consulting experts.

It is strongly advisable to take your Oncologist into confidence when you wish to start Alternative treatments.Don’t ever stop the medication give by your Oncologist.

My strong advice is that you start looking for Alternative therapies as soon as one is diagnosed . The patient or their caretaker can do it.There’s a lot of information on the Internet.  Ignore any negative information.

Read blogs of people who are doing well and cured themselves. The first blog that I came across was margarethealthblogs.com . I was introduced to Curcumin by Margaret.

Watch youtube videos on the methods that several people are adopting to cure cancer.

Join online forums where you can share your problems and you may get some advise.

In India, yoddhas.com is one such forum. They are on facebook too.Feel free to share your concerns.Only when we open up and share , we receive help. It was through this forum that I met some wonderful people who have helped me to be where I am now.

Continue to look for other solutions even if you have started using an Alternative therapy.

Some options are : Juicing, Exercise , Deep breathing , Meditation , Positive thinking , Eliminating foods like sugar , white rice , dairy , maida (all purpose flour) and other acid forming foods in your diet and  include more alkaline foods .

Check your B12, Vitamin D , Calcium, Uric acid levels as often as you can along with other regular tests like CBP, LFT and RFT.

There are a lot of self help books written by those who have successfully battled cancer. Read up and follow them. I have read two inspiring books recently , namely ‘Dying to be me’ by Anita Moorjani and ‘You can heal yourself’ by Louise Hay. Both have healed themselves of cancer and helping a lot of people to heal themselves.There are a lot of videos by them on youtube.

 

 ‘If you think you can, or think you can’t , you are right’ – Henry Ford 

 


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Book Review – ‘Dying to be me’ by Anita Moorjani

A colleague recommended the book ‘Dying to be me’ by Anita Moorjani.

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It is the true story of Anita, who had a Near Death Experience when she was almost on the verge of dying from Cancer,went into coma but recovered completely in a few weeks after that experience.A miracle by all standards.

I have come across people who have been managing quite well and living for several years. I recently learnt about a woman who was diagnosed with Multiple Myeloma 23 years ago.She meditates regularly and is doing fine.

While reading the book ,I was nodding at every point that was mentioned by Anita. About how we restrict our true feelings for the sake of society, about how we feel inadequate , how we give the least priority to ourselves etc.

Her experience during NDE about feeling one with all the beings in the universe , about realising that we are made up of love , about experiencing past present and future simultaneously , feeling love for all beings etc are all the same stuff that all spiritual masters have been saying all along and is written in various biographies and scriptures of hinduism and possibly other religions too.

I picked up the following from another link.

Things Anita Moorjani learned from her Stage Four Cancer & Ensuing NDE:

1. You attract what you fear.

2. If you’re sick, don’t fight it. Embrace it. Love where you are now. Only when you approach your health challenges from a point of love can you overcome the fear.

3. Sometimes less information is better. When it comes to illness, more information does not necessarily equal more power (too much research can actually add to the fear and symptoms).

4. Through your illness, your body is giving you a message. Work to understand and be with what is.

5. Everything comes from within.

6. Ask yourself, “What brings me joy?” And do more of that.

7. Don’t obsess and make your life about the illness.  

8. Love yourself unconditionally.

9. Positive thinking can only help to a certain extent. It’s more about being yourself and loving yourself – regardless of what you are going through.

10. Stop judging yourself.

11. Express yourself fully. Ask yourself: “Am I allowing myself to express who I am?  Am I being this person because I want to be accepted, or because it is who I am?”

12. Be centered in your true essence. From the place of pure centeredness, miracles are possible.  It’s about being, not doing.  When you are in the space of being, miracles are possible.

13. The only thing that limits you is your own beliefs.

14. The best way to get our of a fear state is to do something that brings you into a state of joy.  Find something that changes your state completely.  Whatever it is – music or art or going out in nature. Do something completely different. Or meditate.  If we can be still, we can go into a different reality.

15. Stay totally open. Get into a defused state in which all of the possibilities lie before you and you haven’t locked into any one.  

16. Follow your bliss and do what you love. We tend to do what we think we should do, rather than what our heart tells us to do.  We don’t do what makes our heart sing.

17. You are your own guru. All your answers are inside you.

18. Nobody is better than (or less than) you. We are all equal.

19. Focus on your feelings more than your thoughts. Make your everyday choices based on what makes you FEEL good, rather than what you THINK you should do or what others think you should do.

20. Don’t let a fear of failing or displeasing others run your life.

21. Realize your own MAGNIFICENCE!

Each of the above points has a deep significance and meaning. It is easier to read but practising is not that easy. Surely all of us have experienced and also accept a few of the above points. We should also incorporate the other points and also ponder on them as much as we can so that we can realise the benefits .

I shall read these beautiful words of Anita every day.

Very thankful to my colleague for recommending this wonderful book.

I bought this book in Amazon.

Here is the link to the book on Amazon.

https://amzn.to/3GrNvpv

Do check it out to transform your life !!

~Lokaan samasthaan sukhino bhavanthu~


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Increase in Globulin Serum…an Ayurvedic Decoction to put a check on it.

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Its been 6 months since i stopped using Lenangio on the advise of my Oncologist. What a relief that was. Something that i prayed for and was longing for . My Gobulin Serum was normal and MSpike was zero at that time but TLC, Neutrophils were very low and i was beginning to get all infections.

For three months , after stopping Lenangio , my Globulin Serum was in the normal range but for the last three months it has been increasing by .1 every month.

Recently , met my Oncologist with my CBC, LFT and RFT reports and as expected he wanted to start Thalix 50mg. I had this apprehension even before i met my Oncologist. I mentioned the same to my Ayurvedic doctor before i met my Oncologist. My Ayurvedic doctor wanted me to request and take one month time from my Oncologist. He would be giving me another medication which will control those villains in my body.

I expressed the same to my Oncologist and got an extension for one more month. I also told him that my Ayurvedic doctor wanted one month time.

I told my Ayurvedic doctor that i am ready to do anything for stopping Thalix . I also told him that i am ready to go on a fast twice a week. He has now sent me two new medications. One of them to be taken in the form of a decoction.

Keeping my fingers crossed as i have begun the daily ritual of preparing a decoction, from a powder which is a combination several herbs, and consume it before sleeping. The liquid is very very bitter and i have something sweet immediately after gulping the liquid. My ayurvedic doctor tells me that the best way to consume an ayurvedic medication is in the form of a decocotion. Though i would love to pop a pill or capsule any day.

Meanwhile i also came across a lady who is 73 years now and was diagnosed with MM when she was 50yrs. I was curious to know of any tips that she was following and learnt that she meditates a lot.

I have resumed meditation. Have also started going a bit slow at work . I  observed that i was getting anxious at home and work. Am now conscious of the speed and intensity of my thoughts.

I am sure that my next results will reflect lower Levels of Globulin serum and i will surprise my Oncologist 🙂 .

 

 

 


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Counselling a caregiver and a patient with Multiple Myeloma

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I received a phone call from the Personal Secretary of my Oncologist who asked me if I was willing to talk to a patient with Multiple Myeloma. The patient was supposedly hesitating to undergo SCT (Stem Cell Transplant).

I didn’t mind talking. In fact i was more than eager to help anyone by sharing my experiences.

I receive a phone call from a guy whose father is the patient.
He asked me a lot of questions.
How I was detected with MM.
How many years since I underwent SCT..
The side effects of chemo.
About losing hair.
Skin turning dark after SCT.
The number of days i spent in the hospital.
How long it would be before the patient can resume normal activities.
Whether i follow any alternative treatment.

Since last one year I have been quite comfortable about sharing my experiences on this blog and other forums.

The guy wanted to meet me personally along with his mom and uncle. For a moment I did feel a little uncomfortable about meeting a patient/caregiver face to face. However, I met them at the hospital and went there after work.

At the cafe in the hospital more questions followed and I learnt more about the condition of the patient. A 61 year old with problem in lungs, liver, backbone and kidneys.  My Oncologist recommended SCT to the patient.Surely the doc is confident and I have the confidence in him. The caregivers asked me about alternative treatment and I said I have been using since a year .
I advised them not to think about alternative treatment at this stage. That they should go for SCT and later they can plan for alternative treatments along with Allopathy. They felt the same way.

They did take a second opinion and SCT was advised by the other doctor too..

I cautioned them about following proper diet and to follow the Diet given at the hospital during discharge.That the patient restrict his movements outside home and use a mask for a few months till his immunity improves because one is prone to infections at this stage.

I also informed them that each patient is different and the experiences may not be the same and cannot be compared.I told them to make the patient feel comfortable and assure him that everything will be fine and to be cheerful around him which is a very important part in healing ,that actually works.

After a while they asked me if I was willing to meet the patient. They wanted me to tell their dad about the importance of diet.I saw a lot of visitors waiting to meet their dad .He was an ex politician .The patient did appear weak and was recovering from a recent lung infection. I told him to be strong and take care of his diet.

I told the guy to inform all the visitors that all will be well. That they are in the best Hospital and with the best doctor who is also a cancer crusader.

~ Sarve Janaha Sukhino Bhavanthu ~


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Summary of my Journey with Multiple Myeloma

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Here is the write-up that I sent to Dr Nitin, my Ayurvedic doctor. He wanted to share my case with his students and others. It is a chronological summary of my journey with MM.

Age: 46

Gender: Female

Location: Hyderabad

Diagnosis: Diagnosed with Multiple Myeloma in Oct 2011

Jan 2012: Underwent Autologous Stem Cell Transplant (ASCT) at Apollo Hospital, Hyderabad. Started taking Thalix 50mg (Chemo)  initially and later increased to 100mg.

Dec 2014: My Plasma Cell count increased to 12% and my Oncologist advised that I should go for another round of Stem cell transplant after three months i.e. in Apr 2015

He also changed my medication to Lenolidamide 10mg (Chemo drug)

I did not want to undergo the second round of SCT. After desperately scouring the Internet I came across a blog by another MM patient , who was living with Smoldering Myeloma and was using Natural supplements to manage her condition successfully for a decade. I then started taking Ayurvedic Medication like Haridra, Ashwagandha, Shigru, Punarnava from ‘Himalaya’ brand . Many other bloggers too recommended Curcumin but because I did not know where to get it I began using Turmeric in the form of Haridra from ‘Himalaya’.

I was experimenting with the above. I also informed my Oncologist that I was taking the above medications and he did not have any objection.

In fact he himself had advised me to take Tinaspora cordifolia ( a herb) , after my transplant for improving my immunity.

In the next three months my blood counts and ESR levels were slowly showing improvement. That was a good sign.

Apr 2015: Was lucky to get introduced to Dr Nitin Kochar , Mumbai by Dr Gayatri ,MM patient from Delhi when I told her that I was using Turmeric. Met her via a social networking group named ‘Yoddhas’. Their website is Yoddhas.com. I Started taking Curcumin and Punarnava and followed diet given by Dr Nitin Kochar along with Lenolidamide. Finally I was in professional hands and it was a great relief.

May 2015: Bone marrow test was cartied out at the end of May 2015 which revealed that MM was in Remission. There was no mention about second time transplant 🙂 . My Oncologist obviously was surprised and happy too.

Oct 2015: Continued taking Curcumin along with Lenolidamide. Bone marrow test was done and my M Spike was zero. Yayyy !!

Feb 2016: My TLC count, neutrophils became very low. The counts were decreasing gradually over the past few months. Started experiencing several infections simultaneously. My Oncologist advised me to stop Lenolidamide. I continued  taking Curcumin , Ashwagandha and other herbs and followed the diet as per Dr Nitin’s advise.

May 2016: Bone marrow test revealed MM in remission. I have not been taking Lenolidamide for the last 3 months. No more Allopathy.

Currently taking Curcumin , Ashwagandha, Nimbodi, Bavchi during the last 3 months. Have been fasting once a week and taking diet as per Dr Nitins advice.

My Oncologist told me to take a break from medication for another 3 months.

Yayyyy !!

Hopefully this will be a permanent break 🙂

My experience with Fasting : I had never fasted all my life. I was nervous initially. I currently fast once a week. I am not supposed to eat anything till dinner time. I can take tea/coffee two or three times during the day. Only if my stomach rumbles and feel weak I am permitted to eat a fruit. I can manage with three servings of fruits . Only Luke warm water to be taken throughout the day. For dinner I am allowed to take vegetable soup and kichdi (single pot meal cooked with lentils, rice and veggies) . I eagerly look forward to eat the warm bowl of kichdi in the evening and feel grateful for the food. It is a great feeling . I am enjoying my days of fasting. Makes the body feel light. Makes the food during the rest of the days taste great.

I also did my own research on the Internet on the effect of fasting and read that Fasting makes the cells go into repair mode. This period of rest heals the cells and tissues in the body , which is very important for a healthy body. I am convinced and surely we can give up food for one day in a week for improving our health. The side effect of Fasting is better health 🙂

On other days too , I follow the Diet given by Dr Nitin. I have reduced consumption of Sugar, Maida , Milk , Wheat , tur dal and have included more of millets , Moong dal , chana dal , veggies , nuts in my diet  .

Feeling good , happy and quite comfortable now. Wish to share my miracle with as many as I can so they too can benefit from Ayurveda , Fasting and proper diet.

I feel happy sharing details of my experiences in this blog through my other posts.

 

~Sarve Janaha Sukhino Bhavanthu~


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Time to get a BMA done.

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Went for my Bone Marrow test yesterday. Got admitted to the hospital at 10am.
It’s been 6 months since I had the last test done. My ‘M Spike’ was zero in the last test. During the third month of the last 6 months I was beginning to experience a lot of problems. Diarrhoea, cold and cough , asthma attack , eye infection . I talked to my Oncologist and he noticed that my WBC count was going lower each month during the last few months . We noticed that too.
So my Oncologist decided to stop Lenangio for one month. Each month for the next 3 months my blood counts were monitored while Lenangio was stopped . All the counts have since then improved . I have been continuing all Ayurvedic medications given by Dr Nitin including Curcumin all the while. I would have been worried about stopping Lenangio if I was not using Ayurvedic medications.

The Bone Marrow Aspiration procedure is carried out by my Oncologist himself.
During the last test I was given a stronger local anasthesia after I was informed.But it made me feel drowsy and sick for 24 hours which I didn’t like. So this time I told my Oncologist about the previous symptoms and requested if they can do away with that and he obliged.
The Aspiration was completed within no time. Took just 5 minutes . While preparing the slides with the bone marrow sample the doc commented that the cells look good. I usually ask questions and I asked how could he say that and he lifted the slide up so I can see , I was still lying on the bed, and showed me the cells and says that they look good . All I could see was a very light beige coloured patch on the slide that appeared neat.
My blood samples were also collected for CBC LFT and RFT tests.
This time I was administered Zobone injection after the bone marrow aspiration was done. The injection was given through IV. When I asked my Ocologist about it he said that it strengthens the bone and can be taken once year. Said that the injection is also administered to others with other bone issues too.

My blood work results were also completed by the time the discharge process was completed.
My Hb is 10.3 , better than the previous month as I restarted Iron supplement.
TLC is normal. Creatine is .9 for the first time in last 4.5 years which is good. My Uric acid level is just above the normal . This seems to be a perennial issue due to high cell turnover. Working on it.
Best part is that my Globulin level is within normal range for the first time … too good.

We left the hospital at 4.30pm.

Looking forward to see the results of the Bone Marrow test which will be out in a weeks time.

~Sarve janaha sukhino bhavanthu~


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Alternative Treatments for Cancer

 

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People with chronic diseases go for various treatments depending on the faith they have in a particular treatment.  Most use allopathy by default, as the duration of treatment is the fastest ,success rate is highest and the results are quick. Some follow a different treatment based on the experiences of their near and dear ones or when Allopathy has no solution or as a last resort.

But usually for cancers Allopathy is the first and foremost treatment that one opts for as the diagnosis itself happens in the third or fourth stage wherein the disease would have progressed to a large extent and Allopathy would be the best treatment. .

I didnt think of Alternative treatments for two years after I was diagnosed with Multiple Myeloma . I started experiencing side effects of Chemotherapy in the third year and I began scouring the internet for other treatments.

Internet is full of articles on Alternative Treatments . Initially I didnt believe all that was written on various websites and was being said on youtube videos by patients. I found them ridiculous too. Always wondered how it was possible that people are getting cured of Cancer which is not curable . Not just ‘managing’ but they were getting ‘cured’ and have been living for decades without any Allopathic treatment. I felt that these people were just exaggerating , that they wanted people to watch their videos , knowing that many would be looking up , that they were just uploading these videos to get a lot of views/hits. There were websites which talked a lot about a cure but at the end of the page there is a link to a book with a price or some secret methods which confirmed my fears that people only wanted to make money by luring desperate patients.

I wanted to believe all this was true , that there is a way , but was not convinced.

I came across various articles on the reasons for cancer and a cure. Juicing, diet, exercise, detox , supplements, antioxidants , various high frequency protocols, immunotherapy , Ph therapy, effect of yoga and meditation for curing the disease and the reasons for cancer varied from DNA mutations to microbes to lack of Vitamin D , poor diet , stress etc. These are a few of the topics that I was reading and trying to digest . All the information was baffling.

Just when I relapsed , at the end of the third year after my Bone Marrow Transplant for Multiple Myeloma, I came across a blog written by Margaret , a patient with Smouldering Multiple Myeloma. She was using natural supplements and has been successfully ‘managing’ the disease for more than a decade. After reading her blog , all the information and videos that I had seen suddenly flashed across my mind and I began believing all that I had read and seen. Suddenly all of it made sense. I was desperate for an alternative solution.

I talked to my Oncologist if he could recommend any Ayurvedic doctor but he was unaware of any specialist in Ayurveda. Ayurveda is an ancient Indian mode of treatment  which uses natural herbs for curing various ailments. He didnt discourage me from using any alternative treatment and advised me to use ‘Tinaspora Cordifolia’ , a natural immunity boosting supplement.

I recommend everyone to do their own research. Once convinced one has to start incorporating one or more methodologies as per their faith and convenience. One needs to have faith in the treatment and should go all the way and follow the methodologies scrupulously.

I have almost given up food products made with sugar , milk , all purpose flour , rice and also reduced salt intake .All of these comprise a bad diet. These are the five white poisons that Ayurveda recommends to avoid.
I also read that cancer cells feed on sugar. I initially started taking supplements like Curcumin (in the form of turmeric) suggested in Margarets blog , started doing Pranayama and meditation , I also started taking ashwagandha , shigru , punarnava , garlic , had ginger decoction in the morning, eliminated most acidic foods  and lo and behold within three months my MSpike was down to Zero !!

It is nothing short of a miracle.

I was later referred to an Ayurvedic Doctor by another MM survivor and since then I have been using Curcumin and other natural supplements since last one year. Fasting is also part of my regimen. I have been encouraging the use of Curcumin to whomsoever I come across. Curcumin is an extract from turmeric .Turmeric is a spice that is extensively used in South Indian cooking and as a medicine in India for various ailments.

It is one year and 3 months since I started following the new regimen and my M-Spike is in control.

Talk to other patients and their caregivers who follow Alternative treatments make your own decision.

If there is a will to survive , a solution will appear out of the blue. Never give up !!

Have patience and the Miracle will happen.