Contra Costa County, CA

Infected: Uncertain
Diagnosed: 2014
Current Health: Still in treatment. Doing well, but not cured.

You are your own medical advocate. Lyme is a constant battle until you have the proper medical team — Do NOT give up. -Shymala H.

Shymala H. is a bold, goal-oriented, business-minded, young woman.  She has been a long-distance runner since the age of 9. Early on, Shymala was always the fastest runner in her grade level and she was running Cross Country and Track by middle school. But one day she simply could not run even a mile …

Despite Shymala’s active lifestyle, she had years of unexplained health problems and yet was told repeatedly by doctors that she was healthy.  Even with the extreme fatigue, dizziness, joint pain, night sweats, lack of stamina, nausea, and fevers, she was never diagnosed with anything more than chronic fatigue syndrome (CFS) and anemia.  At 30, she was finally diagnosed with Lyme disease and Babesia. Sadly while she appears healthy, she continues to fight for her health daily.

Shymala saved herself by becoming her own medical advocate and believing that no one knows her body better than herself. She researched, hours upon hours, and fought for every test possible. In efforts to return to a clean slate of health she has now converted to a raw-food diet, regularly does low-impact physical activity, and detoxes while undergoing treatment under the care of a dedicated doctor.

Shymala’s greatest piece of advice: “ You are your own medical advocate. Lyme is a constant battle until you have the proper medical team – Do NOT give up.”

Now, Shymala focuses her energy on creating awareness and spreading knowledge about this hidden epidemic around the Bay Area. She has partnered with several Lyme-focused organizations around the country to begin fundraising and increasing community involvement.  She feels it is her obligation to become and advocate and share her story with others.

 

7 Comments on “Shymala H.

  1. Hello, I had a few questions for you. I live in the bay area and have been sick for over four years. I can not get a doctor to check me out for Lyme disease. I seen numbers of doctors and they say that there is nothing wrong with me. Just anxiety. I’m losing my life with my three- and five-year old boys and I can’t get help anywhere. Any suggestions would be greatly appreciated. Thank you.

    1. Hi Brent,

      Thanks for reaching out! First, let me start by letting you know how sorry I am that you are struggling in searching for assistance and to assure you that you are certainly not alone. Unfortunately it is common for so many Lyme patients and it is simply very sad. Secondly, I am going to be very direct. Too many times during my early stages of searching for answers I wish people had just been direct with me rather than dodging answers. I might have saved money and found a diagnosis and answers sooner.

      I am assuming when you are saying cannot find doctors check you for lyme you have gone to a Lyme Literate Medical Doctor (LLMD). I can understand you may be stand-offish due to costs….but you may want to start mentally preparing yourself for those costs. Before that let’s try visiting your Primary Care one more time with a bit more ammunition…….

      1. Print this form. Take a considerable amount of time to fill out this symptom list. Really think about these symptoms and how they affect you and how often. Follow directions to come up with the final score and take this this to the Primary Care; this will be a good baseline to prove testing might be necessary.

      2. Testing: The tricky part with Lyme is testing can be very inaccurate. Western Blot tested through LabCorp. I took this test 3x, twice tested positive with several bands, and once negative. Your next option and very important step: is to request an iGeneX Kit. iGeneX is the lab that tests for Lyme disease and co-infections. It has 98% accuracy rate, but is very expensive. It is prepaid, and not covered by insurance, and needs to be signed off by a DR. BUT…..maybe your checklist your will score high enough to encourage your doctor sign off on the form. I recommend for now just doing 6050 Complete Lyme Panel. I believe it is 475.00. If you call iGeneX, they will tell you the price. For now this will help you keep costs down……

      3. Your Doctor.
      If you find your primary doctor will not sign off on the lab requisition for iGeneX, and your results from the symptom checklist are high, you need to seriously consider seeing a LLMD (Lyme Literate Medical Doctor). I will be honest, these are very expensive, there can be a waitlist, and you may have to travel depending on where you live, BUT…….my LLMD has changed my life…….he is worth every penny. There is really no dodging the bullets here, if you truly have Lyme, you must get a LLMD and get the proper care for you and for your children……Lyme can change your life in a matter a moments. I have been under the care of LLMD for nearly 2 years now and I am back working 40 hours in an office ( senior manager for Tech Company), just starting be physically active again, and slowly becoming myself again. I am still under treatment and very sick, but if it hadn’t been for the major financial adjustments and health style adjustments I made under my LLMD’s care I made 2 years ago I wouldn’t be where I am now.

      I wish you best of luck, I hope you find a diagnosis quick.

      Sincerely,
      Shymala

    2. Brent, All of us at the foundation empathize with your struggles and hope you find better answers and support soon. Shymala speaks with the understanding that comes through experience. Should you need a referral for physician familiar with Lyme disease, please do click here. We can direct you to a list of local doctors who may be able to help. There is also more information talking with your doctor, getting help, and other resources on our website. We wish you the very best for you and your family.

  2. Is Lyme disease is contagious or infectious from one person to another ??? I am suffering from crawling sensations, itching sensations, insomnia, breathlessness, headache-like swelling inside my head, and heart pain for the last two months. I would like to brief you about how this happened to me.

    Before two months ago, I visited a government hospital to cure a low blood pressure problem. [At the hospital] I met one patient who was bedridden, accompanied by his mother He was unable to walk due to a muscular-skeletal problem, unable to talk (other than screaming at regular intervals), and had infections all over his body. I don’t know what happened to him and after his checkup my turn came so I briefed the doctor about my low blood pressure. The doctor did a routine check-up on same bed where doctor had previously done check-up of that bedridden guy. After my checkup, the doctor prescribed me some medicine and I came back to my home. But, after two days, I started having itching, crawling sensations and then after 10-15 days, insomnia. Now I have back pain and headache and heart pain.

    Please tell me if you have any solutions to my case. Is my case due to Lyme disease or Morgellons?? Pls reply me as soon as you get free time. Pls pls pls. My mom, dad, and my nephew having same above symptoms so do needful as early as possible.

    1. Vicky, we are sorry to hear about your troubles. Bay Area Lyme Foundation is not a clinical entity and therefore does not diagnose, prescribe, or advise individual patients about their specific cases. We would strongly encourage you to find a health care provider with whom you can discuss your concerns. In general, Lyme disease is transmitted through the bite of a tick, not simply through contact with someone else who is infected. An infected tick will typically feed just once but it can travel from one host to another (most often from a pet to its owner). More problematic is the fact that the ticks are so small it is easy for them to go unnoticed and while a skin rash is a common side effect of the bite, it is not uncommon for patients to never have any visible rash or recollection of a bite. There are many other common signs and symptoms (some of which you have cited), though again we would advise that you speak to a health care provider about any and all symptoms so that you might be properly diagnosed. You can refer to the section on the website about speaking with your doctor about your symptoms and we also can refer you to a physician if you need help finding a doctor. We wish you the best of luck.

  3. My daughter and I were tested by Western Blot through Lab Corp six years ago. I got a CDC diagnosis for Babesia on the first test as well as bands showed for Lyme, Bart[onella], and Erlichia. I needed no more tests to begin treatment. My daughter had bands for them all but wanted a CDC diagnosis which took two more tests. Neither one of us ever saw a bill. Just wondering if these poor people who don’t do anything at all because of money might at least start with the Western Blot and not go through a private lab? We know many people who have done it this way with positive results. Thinking it may keep them from getting treatment that much longer having to pay $1,000 for the testing? We live in Virginia.

    1. Thank you for the comment, Moya. We are happy that you were successfully diagnosed and, it sounds like, responding to treatment. Unfortunately, for many, the path is not so expeditious and it is not necessarily for lack of testing — though indeed encouraging folks to get tested is certainly an important endeavor!

      More troubling is that the diagnostic testing regime you described is not failproof. Because it can take 2-4 weeks for the body to generate antibodies, both the ELISA and the Western Blot tests have been shown to miss up to 60% of acute Lyme cases. They also do not detect other related Borrelia species (e.g., the Lyme-like Borrelia miyamotoi), have high inter-and intra-laboratory variability, and cannot be used to assess treatment response following antibiotics.

      Most people who do go to alternate CLIA-testing labs have already had a negative result from a standard test like LabCorp. LabCorp only tests for antibodies of one strain of the bacteria and many people will be infected with alternate strains, especially on the West Coast, so it is not surprising that those people may not test positive as the antibodies might be very different.

      The key is persistence — tracking symptoms and continuing to follow up with your care providers to get resolution. We hope some day to have more reliable, easily-accessible diagnostics.

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