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May 3, 2015 | by Masumi Goldman
5 Tips to Consider After Being Diagnosed with an Illness

Those of you who have been following me on Instagram know that I’ve been on a long-term healing journey for a mysterious autoimmune condition.

Three and a half years ago, I gathered multiple opinions for acute roaming pain in my tendons and ligaments— severe pain that would strike without warning and then disappear randomly without a trace. I had blood tests, x-rays, and MRIs. I met with two rheumatologists, a sports medicine doctor, physical therapists, a podiatrist (to assess damage in my hips and feet) and a general practitioner. I was not lazy with my medical care. Based on my blood work and clinical findings, these bright professionals with years of experience each came to the conclusion that I had an autoimmune disease. The treatment for such an illness was pain management and immune-suppressing drugs. None of these drugs were mild.Extreme close-up of medical pills and syringe on white background

Rather than turning to medications that had a long list of side effects, I turned to a macrobiotic diet to heal and suppress symptoms. I found a macrobiotic counselor who suggested a strict healing diet, and I found tremendous success after just four months.  I never had to take any of the strong medications that are typically prescribed for rheumatological issues, and for the most part, I’ve felt very good.

I started noticing a change in my health this past September when my daughter was admitted to the hospital for a kidney transplant. The palm of my left hand started to hurt while I was in that hospital room with my daughter, and the pain has not subsided in the months since.

Within a few weeks of receiving a new kidney, my daughter rejected the kidney, and we found ourselves back in the hospital, living a nightmare. It was at that time that my right knee began to hurt, and I started to have trouble walking.

A couple of months later, my right wrist began to hurt, and I’m now at a point where I can’t put much weight onto either of my hands without feeling excruciating pain.

Stress is an unbelievable force. It can change your body chemistry and trigger illness. No matter how strict I became with my diet, I could not find healing. After a few months of struggling to heal on my own, I contacted my macrobiotic counselor. She was very firm with me. She reminded me that she always thought that something else was going on in my body. Based on the principals of oriental diagnosis, she examined me and maintained that she continues to think that I have Lyme disease or some kind of parasite. I reminded her that three years ago, I had asked both of my rheumatologists for Lyme testing, and they both refused. They told me that Lyme is the most over tested disease that rheumatologists see, and that they had no basis for testing me.

My macrobiotic counselor told me to start searching for a new doctor and to keep searching until I could find one that would agree to testing. Four weeks ago, I found an integrative doctor who agreed to help. I had extensive blood tests to check for Lyme disease and the co-infections (parasites) that often travel with the infected tick.

One week ago, I received my results, and my macrobiotic counselor was right. I can’t ignore that I DO have antibodies that are suggestive of an autoimmune condition, but perhaps the formation of those antibodies was triggered by being bitten by an infected tick. I am now starting a long course of two different types of antibiotics. I have been warned that this could take quite a while to heal, but I am patient. After all, I’ve been patient for the past 3.5 years as I harbored these parasites in my body without any medical intervention. I can continue to be patient.

Let me tell you what I have learned from this experience that may help you if you’ve been diagnosed with an illness or are currently searching for answers about your own medical condition.

-Always seek multiple opinions from the best doctors when dealing with a serious medical condition that requires treatment.

-Once you have your multiple opinions, don’t assume that your multiple opinions (even if they are in agreement) are 100 percent correct. Always leave the door open to other possibilities.

-Search for a good doctor that practices integrative medicine and combines the best of western medicine and alternative therapies. Remember that not everything that heals in this world is found under the roof of a hospital. Take the help from medications when necessary, but keep in mind that healing and cures don’t always appear in the form of a pill or a syringe. Don’t underestimate the power of the body to heal itself with natural remedies.

-Find the discipline within yourself to try a natural healing plan. But don’t forgo the experienced care of a physician! Work alongside your medical team. Do everything in your power to strengthen your body. Cut the sugar. Cut the processed foods. Start loading up on greens and sea vegetables and fermented foods. Strengthen your gut, and strengthen your immune system. I adopted a strict macrobiotic diet, and by doing so, not only did I heal from unimaginable pain, but I also eliminated a bunch of other smaller issues (like debilitating seasonal allergies that plagued me each spring for 15 years.)

-Don’t allow your gut feeling to be drowned out by your doctors. In hindsight, I realize that I had a gut feeling. There was a reason why I was asking each doctor for Lyme testing. I allowed that inner voice to be drowned out by doctors because I valued their experience much more than I valued my gut feeling. Be your own greatest advocate. Insist on the tests you want to see. Offer to pay for them yourself, if necessary. Or keep looking for a doctor who is willing to explore your ideas and theories. They may not pan out, but you will feel much better after covering all of the bases.

13 Comments
  • Answers are so hard to find in this autoimmune / Lyme world- I am struggling with a few autoimmune diagnosises, but still don’t completely accept them- since it doesn’t add up. Is there any chance you could recommend your doctor to me? We’re in the same area. Thank you for sharing your story.

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    • Masumi Goldman

      The integrative doctor who sent me for testing (Dr Frank Lipman) is not a doctor who deals with complex cases of Lyme and its co-infections. If you are still dealing on the auto-immune side, I highly recommend Dr. Lipman. He does not accept insurance, but I found that it was worth the cost.

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  • Excellent article!! I am an RN and I am constantly reminding my patients to do their own research and that it is ok to seek out a second opinion… it is ok to be firm and insist on blood work and/or tests and if that doctor is unsure then ask for a referral to a specialist that is able to order it. Many people are nervous to speak up, but it can save your life! Thank you for this article and bringing awareness to this issue!

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  • Wow. I’m glad you found the right diagnosis. Unfortunately, many Lyme symptoms, such as flu-like feelings, headaches, fatigue, and painful or swollen joints, can easily lead to a misdiagnosis. Many of these symptoms mimic other conditions, and a misdiagnosis can cause a crucial delay in treatment. Lack of proper treatment in the early stage can cause a patient to slip into a late disseminated stage, where there is considerable danger of continued misdiagnosis, and developing chronic problems. . It’s hard to find a lyme-literate doctors (and yes, look for one in integrative/functional medicine). Thank you for sharing your experience and story!

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  • Masumi — First, I am so glad that you got tested for Lyme. I hope you were also tested for other tick-borne co-infections like bartonella, babesia, etc. Cutting gluten, refined sugars, etc. from your diet are quite helpful too.

    I know this as I was diagnosed in 2008 after I went numb from the waist down and a random co worker insisted what I believed was MS was Lyme. So began my journey — obtaining tests from Igenex, taking the results to a LLMD and finally getting on tons of antibiotics, supplements smd vitamins. Over the years, many other issues I had began to clear up too.

    I wish you lots of strength and positive energy to heal.

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    • Masumi Goldman

      Thanks for sharing your experience! I tested positive (Igenix testing) for Babesia and Ehrlichia. I am currently being treated with two different antibiotics for the babesia because my results were off the charts abnormal. I’ve done everything I can possibly do with my diet and supplements, so now I’m hoping that the antibiotics will give me the boost I need to get better!

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  • Serah Giarrusso

    Hi Masumi! I have followed your IG page for over a year now. I love your posts and am always inspired by your words and pics. I just read that you might possibley have Lyme. One thing that held me back for a long time was eating gluten. I have Hashimotos and have found a huge relief in cutting gluten (biggest offender),dairy out and soy out. Perhaps cutting one or all of these out is something that could help you too. I wish you the best and just wanted to share my thoughts.

    Serah

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    • Masumi Goldman

      Thanks for commenting! I have been following a macrobiotic diet for three years now, and I’ve done it all— no dairy, refined sugar, fruit, processed foods, flour, or animal products. And I’ve tried months off of gluten. I don’t think I have a gluten sensitivity, based on my trials. My main trigger seems to be refined sugar, so if I stay away from that, I do very well.

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  • wow. i discovered your videos today and as soon as you said pain in your hips on your intro interview, in one of your videos, i immediately thought lyme disease. my next thought was that if youre able to do this with lyme or co infx or pain, i might be able to, as well. tho’ ive been sick since 2000, i was bitten in ’93, so mine was dormant quite awhile. my pregnancy in ’97 triggered it. 23 doctors and 5 years later, i found one that sent my blood for dna testing, to Igenex labs. they’ll find whatever you have. i have lyme and 4 co infx.

    so after watching the ntro video today, i found your instagram to follow and decided i’d try yoga. just came here looking for the info for the app and read your story above. so happy that you didnt give up, and found a dr to treat you.

    i belong to several lyme groups on fb, which saved me because i thought i was alone for so long, after i lost my business, husband, house, farm and alot of friends and family members, due to my illness. its been downhill ever since.

    worse yet, i later found out i passed it to my daughter while pregnant. hers became active at age 3 1/2. the upside to me having it, is that by then i had been researching and new the symptoms. so the very day she told me her legs hurt i just knew and took her for the blood draw to be sent to Igenex. she was positive for lyme and 3 of the co inx.

    she had 12 weeks of iv abx followed by oral for 4 months. because she was treated immmediately, she had a great response and has been doing well. completely different from my experience. she’s an honor roll student, in high school, runs track and is on the swim team. meanwhile, i cant remember what i ate yesterday and can barely get 10 feet to the bathroom on my own. i had iv abx for 18 months, followed by a year of oral. it definitely made a difference. but i had too much damage by the time i started treatment.

    lymedisease.org has alot of good info. i wish you well and hope you find the right treatment. and if no one has warned you about the herx, be prepared to feel worse before better. that just means your treatment is working and killing the bugs.

    full moons are bad too. the ‘chetes seem to be partying and multiplying during those. lol

    i will look for you on twitter as well – my handle is tickedofflymie.

    thank you for the inspiration and the spark of hope you lit in me today.

    michele dausch biggs

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    • Masumi Goldman

      Wow. Thank you for taking the time to type all of this to me. I woke up this morning and showed your note to my husband immediately. We were both so startled at how similar your experience has been to mine. It’s crazy, actually. Because of your message, we are now scheduling Igenix testing for both of my children. I’m going to contact you directly through email now. Thank you!

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  • oops, just read thru the comments and see you were lucky to already find igenex. yay!

    i don’t have erlichia, but do have babesia. sometimes i think that pain is worse than the lyme.

    also, i apologize for the long post above. not good for lymies. :)

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  • A friend who was misdiagnosed for about 10 years may be coming up to Boulder, CO to see Dr. Dan Kinderleighrer- have you heard of him? I hadn’t, but apparently he’s a big deal with those who suffer from Lyme Disease, and I thought of you and your story having read it a few months ago. I know you have been to Boulder for Giam stuff, but was curious if you also have seen this specific doctor. If so, would you be willing to share any insight about him so I can pass it along to her. He has a long waiting list, and I’d like to give her some information if possible.
    Thanks

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    • I have not seen that doctor. I’m being treated by a Lyme specialist/integrative doctor in New York. Sorry I have no insight to share!

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