Family with lyme disease in Australia

What Treatments Worked?

Many people email me and ask what treatments I would have done differently.  The biggest advice is this:  there are many ways to treat Lyme, at the beginning just start treatment. 

Antibiotics, herbs, homeopathics, both or all.   If you are very sick don't put too much importance on which bugs you've got.  Testing is so unreliable and expensive and exhaustive.  Just assume that if you are very sick you have all, most, or simply put, "a ton of infections."   Viruses, protozoal (parasites), bacteria, and atypical bacterial are the casue of chronic Lyme disease.  Anything a tick fed on before feeding on you got put into your blood stream.  This is why I think so many people don't get better.  They fail to treat for all infections.


How do you do treat them all?  Broad spectrum treatments.  Treatments with multiple agents- homeopathic, mushrooms, herbs and antibiotics are needed.  Read through my early posts.  I started with oral antibiotics and Cowden herbs, while replacing various vitamins/minerals and hormones, then after plateauing, I moved on to continuous intravenous antibiotics, followed by multiple pulsed intravenous antibiotics, and finally used intravenous homeopathics (pleomorphics) and peroxide. 

It's not a race.  The goal is NOT to "herx like hell," as you will hear on the forums.  The goal is to have slow steady die off, but if the die off is too intense, you need to hold treatments and detox and pay attention to good diet.  That's why eventually I embraced pulsed treatments- M,W, Th F for 2 weeks with 1-2 weeks off so that the body can do a little recovery and you don't feel completely victimized. 

Hormones and supplements are key.  Monitor TSH, free T3, rT3, free T4, cortisol (saliva), DHEA-S, IgF-1 (growth hormone marker), testosterone, and a most important hormone, vitamin D (25 OH D).  Melatonin is trickier to measure, so I just say take this most important antioxidant, 1-5 mg, whatever it takes to get you through the night, start slow and work up.  if you are a lady with irregular cycles, make sure to start using progesterone to regulate the cycle and if you are missing cycles, add in estradiol (transdermal).  You don't need to lose bone as well as your mind with this illness.


The other key is to follow your intuition.  I can not stress this enough.  If you are doing a treatment and you feel it, or the practitioner, is no longer working for you, its time to move on. 

Likewise, if you are on a therapy and it is making you feel too sick, reconsider.  Take a break.  if is die off you will feel better off the treatment.  Then, when you are stronger in a few days, restart it.  If you stop it and you feel worse, you are likely toxic from the drug/herb, and you need to detox. 

Easy cheap deotox support:  vitamin C, 3-5000 mg/day, lemon water 64 oz/day, detox baths with sea salt, baking soda and epsom salt, detox teas, green juices and plenty of green vegies. 

Don't go back on treatment until you feel better.  This process is not and I am not advising that you start and stop therapies without discussing it with a trusted advisor, who is hopefully, your treating practitioner. 


Hope this helps- next blog I'll share what recovery feels like for me, and why it is not relapse.......

I'm Well and What Does That Mean?

Hey guys, sorry but time flies in the Lyme stratospheres. Many have contacted me through my website, phulicohanmd.com, wondering what's been happening with me. If you read recent blogs on the site you will see that I am well. But what does "well" mean? For me my current state of well is : normal immune and liver blood tests, NO antibiotics since July 2011, nearly off of all seizure medications, sleeping through the night, and having full days out of bed. I also have a completely normal neurologic exam for the first time in 4 years. There are some caveats that I will be blogging about in the future, such as Post Lyme joint pain (right shoulder), autoimmune issues (thyroid, but getting better) and PTSD, Post Traumatic Stress Disorder. How did I get here? Serious detox, (intravenously, orally and transdermally), supporting hormones and metabolic pathways, (methylation and other detox pathways), and neurotransmitter balance. I would not be here without having other supports like physical therapy, constitutional homeopathy, relaxation yoga (Svaroopam yoga), Family systems therapy, to understand my hard life lessons like asking for what I need, having healthier boundaries with friends, families, and the public at large, and not overdoing things and running around in a race to nowhere.

Hormone Advice for Lymies on Facebook

I have a Facebook page for hormone advice specifically for Lymies. Just search, "The Natural Hormone Makeover," on Facebook and you'll see it. Its become quite popular- hope it helps you hormonally challenged, multiply infected people. My book, (same title) is helpful for Lymies since most of us lack pituitary function.

Recovery

I am in recovery phase. No one gets it, especially my family.

It has been 13 months and 2 weeks since my IV was removed. Me and everyone thought I would be on “easy street” after that. Well, I am on “easier street,” but what the hell does that mean?

It means that although the IV treatments worked miracles with me and for the most part I am enjoying life as never before, and who wouldn't after nearly 2 years in bed? Despite my gains, I still miss me.

I am adjusting to "new me." I like new me. I am thin, now blonde and taking time to literally smell the roses, but my brain is healing and my emotional resilience is still not there. I need to rest, avoid stress, air flight and family fights at all costs. I prefer to live in a Chrysalis. But unfortunately my chrysalis is permeable to cell phones, text messaging, needy tweeny/twenty-something or other children, and aging parents.

I still have trouble with air-flight (next post), excess stress, excess stimulation i.e.loud noise, bright lights, and crowds.

Let me give you an example of my progress. I just returned from our 4th child's college graduation, (yeah us!!). It involved transfer flights from Boston to Ohio, 90 degree weather, some family tensions (nothing too bad), noisy restaurants, shopping with 3 daughters for clothes, and all of this on the heels of having attended 2 funerals (no, not both Lyme, but see my last post). That is a lot of stuff, don't you think? I handled it all well until the last day of our trip when it all became a bit too much. And I felt overwhelmed, sad, depleted and much like burned toast.

I had mood instability but handled it without Clonopin or making a scene, unlike exactly one year ago when I attended our 3rd child's college graduation. At that time, I had to deal with air travel, heat, and being left alone amidst an enormous crowd all while bagpipes and a band played on, and on and on, and speeches, (with loud, intermittent clapping) seemed never ending.

At that time I had a full blown Limbic seizure exactly one hour after the ceremony, when in the safety of our hotel room, (although it actually began with a irrational argument with my husband in the elevator up to the room). My seizure that day involved nearly murdering my husband, and pretty much totaling our hotel room, all while missing the celebratory dinner. So there is great progress here, but I still miss me; resilient Superwoman me.

My lesson here is: be kind to me, be patient, and get to know "new me," she's not too bad, and I like her most of the time.

Indecision Can Be Deadly

This week a Lyme friend lost life from Lyme disease.

Sadly the typical cause of death from Lyme is suicide. Wendy had little support from her immediate family and was paralyzed with indecision about what treatment option to go with. She made the rounds to all of the best Lyme practitioners. Eventually weight loss and poor nutrition made an intense IV therapy dangerous, though it was offered eventually. I had arranged for a nutritionist and personal chef to provide companionship and food.

I told her father, a Lyme supporter, that she should have been hospitalized. "But where, he asked?" He told me the week her husband had taken to the best hospital in the Medical Mecca of Boston. But they did not know how to treat her. They do not understand chronic Lyme, though we live in the nation's Lyme belt.

I have been suicidal many times throughout my illness. Without a friend and husband I could have lost my way.

Her dad and I hope to start a Lyme prevention system in her honor. Starting with a nonprofit devoted to prevention and support for suicidal sufferers.

Do find a program that feels right and stick to it. Pay attention to your nutrition, detox, and hormones.

Most Lymies have some issue with weight, due to drugs, poor gut function, metabolism and hypothalmic dysfunction.

Stay positive, get support, stick to a program and if it is not working or doesn't feel right change directions with your practitioner or find another. I use a team of healers and physicians. My program works for me but everyone is different. There is no one treatment for Lyme disease. At least that's what I think today.

I'm Conquering Lyme!!!!!!!!

Well, that's a bold statement but I want the world to know that I am on the road back from Lyme world, four years later.

I have just returned from a great 4 nights away to Bermuda with my husband........wow, it was the first time that I felt "normal." I even drank a couple of Cosmo's and put away a bit of wine.

So many have emailed about how I am doing.......and what I am doing.

I am continuing on the same 4 days PULSED oral regimen every 3 weeks. That is, 1 week of M,W,F combined antibiotics, with a 2 week break in between. I am still taking Mycobutin (150 mg twice daily), Omnicef 300 mg (twice daily), Bactrim DS (1 1/2 tablets twice daily), with Flagyl (500 mg twice daily on Th and F). Other things like acupuncture, weight training, high protein diet, and supplements. I promise to go into more detail my supplements next post.

I am herxing less and less, (oddly, my worst herxes are 2-3 days after Flagyl). I rarely have noise intolerance, my emotions are much more stable and my mind is coming back. I am working on a 2 books and blogging about Women's health again. I think it will be a year before I attempt to return to giving workshops. I know I need to keep my things slow, get enough rest, (hard to do when you have years of life to catch up on). I need to consider my next phase of life carefully.

I'm working with a psychologist who specializes in PTSD, (Post Traumatic Stress Disorder). Lyme illness is so devastating and life altering and there are so many emotions to deal with as you recover. Anger over people who weren't there, anger over the medical system, the financial toll, the toll on one's family....I could go on and on.

Stay strong, please.