Healthcare Hacks - The India Story

Embryonic Stem Cell Treatment: Back for More

Kyla Puklus — Wed, 09 Nov 2011 00:18:08 +0000

One Year Later: Returning to NuTech for Booster Cells

This past June, 2011, I returned to NuTech in Delhi, India for more embryonic stem cell therapy. This time, I planned to stay one month instead of two, receiving stem cells as 'boosters' to my already one-year-old babies from last Summer.

I went back for many different reasons. I went back because I have invested a lot of emotional and financial resources into this treatment and it would be foolish not to see it through to its full-potential. I have always known that one treatment would probably not be enough. I went back because no other treatment has provided marked improvement with such mild side-effects. I went back because I didn't want to regret working so hard to get stem cells, only to let them die from Lyme disease before reaching their full potential.

I am still recovering, but I have not regressed.

Improvement is slow; much of my improvement is noticed by others around me more than by myself. While most doctors do not think the stem cells kill the Lyme bacteria, they believe that the stem cells may repair the immune system, nervous system, damaged muscle tissue and brain damage the disease has caused.

A friend of mine fractured her leg last year and also damaged a ligament in her knee. Her doctor told her that the ligament, with physical therapy twice-weekly, could take up to a year to heal. (A whole year for one injured ligament!) I thought to myself, "How can I expect stem cells to repair my damaged body after five years of infection in six months when my friend, without stem cells, will need a year for just her knee?"

It is only after I look back and review my medical records, journals, complaints and the way my life was can I see any improvements.

My mind is sharp. Before, I lived in a fog.
I am not tired all of the time. I used to barely make it until 3 p.m. before having to sit on the couch in a semi-dazed stupor.
I haven't been really sick this year. Over the last few years, if I encountered someone with a cold, I got a raging infection; I caught Swine Flu; Strep-throat; Sinus infections; cold-sores surfaced every four months.
Jaw pain. It is still there, but just barely.
Sleep. I can sleep a full eight hours.
Air-hunger. Gone.
Heart-pounding. Only when I'm nervous!

People say I seem happier. I am glowing. I am nicer; I am doing more than just "getting by." I have found the love of my life, and one of the worst times of my life has also been one of the best times of my life. But this is not the cause of my happiness: this is the result.

Going to India gave me hope. But going to India was not the only thing that changed me. Somewhere along the line, I realized that my life could no longer be how I thought it should be; my life can only be how it is right now. I think the hardest part of being 'sick' is letting go of the life you think you are supposed to lead and the life you can lead. Life does not happen to everyone else; it happens to you. You have to be willing to change, to adapt. You have to make your own rules. This applies to everyone, but I think being 'sick' forces you to come to terms with it a little faster than others. I highly recommend the book How to be Sick by Toni Bernhard.

I am still in pain. My back still aches every day. My right knee still hurts.This is why I returned to India. I am still healing.

Stem cells work as a synergy with other treatments: physical therapy, diet, stress-management, antibiotics, etc. Just like a house does not get cleaner overtime, our health needs constant attention. Our minds may grow younger, but our bodies do not.

Permalink | 6 comments | Kyla Puklus's blog | Channel: The India Story

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Amy Scher: The Stem Cell Relapse Rumor Put To Rest

amybscher — Fri, 09 Sep 2011 02:19:28 +0000

By amybscher

I am a non-blogger these days, often contemplating writing and then settling on the fact that I no longer have anything 'interesting' to write about. I am normal and boring it seems. And I love it.

In recent days however, the India pot has been stirred up a little. I have had several people contact me, concerned that I have relapsed. Apparently, that was the word around what I call 'Lyme-town,' the virtual world where Internet forums and email groups and patient blogs rule. And often, as I've learned in this little loved cyber town, reporting can be inaccurate.

So, I am here to set the record straight, and not for the first time. I have been talk of this town before, sometimes in good ways and sometimes not. This is the price of stem cell fame.

Here goes it.

I did not relapse.

I am healthy and happy and continue to be asymptomatic.

My recovery, due primarily to stem cell therapy in India (with a little side credit going toward pre-stem cell antibiotic therapy, as stem cells only have the ability to repair the body but cannot kill bacteria), is still mine to keep. I believe India is an extremely viable option for Lyme patients to consider pursuing, if traditional treatment has failed. I believe it saved my life. Nothing I had tried prior had come even close to restoring my health back to whole again.

I have disclaimers that always come with any talk of my improvement with stem cells. I give them genuinely, and not out of fear that something I say will send people in the wrong direction. They are just what I've come to know about this treatment.

1. I do not recommend this treatment for two categories of people: Anyone with ALS (this excludes those with ALS/Lyme disease whose physicians, or themselves, believe their symptoms may be primarily related to Lyme); and those with psychiatric disorders.

For most with ALS, I simply think the disease is too fast progressing. I don't think the stem cells can keep up, fighting the downhill battle of this disease. I think it's too treacherous a trip and too costly financially and health-wise for those suffering with this delicate disease. In addition, I do believe it slows down the process just enough to make the natural disease process more difficult, but not enough to save the life of the suffering person. I have known many who have lost their battle with ALS after several trips to India. In fact, almost everyone I know who has gone. The one patient I know personally who is still living, is just doing that...living, but by no means engaging in life as most of us know it. Again, this statement this excludes those with ALS/Lyme disease whose physicians, or themselves, believe their symptoms may be primarily related to Lyme.

For psychiatric patients, I think it is downright dangerous. Culturally and medically, India (and its incredible doctors), do not have the same skills we have in other countries to safely handle these types of patients. The level of understanding from a human and medical perspective is not progressive enough yet, for me to feel this would be a good option. It is not for lack of being well meaning and compassionate. It is just a mix of Eastern culture, and limited experience. The very skilled care needed in the case of a psychiatric emergency is not readily available and as advanced as most psychiatric patients are accustomed to. And above all that, this experimental treatment is far too experimental to even gauge what the effects on the brain chemistry could be in someone with a psychiatric condition.

With both of these conditions, my biggest concern is that once given stem cells, the effect (whatever that might be on an individual basis), cannot be undone.

2. This worked for me. But yes, I have known others who did not have the same results. There is a huge component of individuality when it comes to medical treatment of any type. Because it worked for me, does not mean it's a cure-all for everyone suffering with Chronic Lyme disease. On the flip side, because others may have not gotten miraculous results, means nothing against the treatment either. I learned this through my years of my own illness. For instance, hyperbaric oxygen therapy, which I attended for nearly 100 treatments (far longer than the recommended treatment length), gave me very little improvement. In fact, after the treatment, I had slightly better cognitive functioning, but my pain was worse than I had ever experienced. However, I met former Chronic Lyme patients at the hyperbaric clinic who came back year after year for maintenance doses as they believed that treatment was keeping them in remission, after having tried many other failed modalities.

The generalization of one person deciding whether stem cell treatment, or any treatment, is a reasonable solution to Chronic Lyme disease, is very dangerous. I will not do it here, or anywhere. Each person has the right to follow their own path, to find their own health, to be the anomaly.

In my own world, I have one condition that did not resolve with stem cell therapy. In fact, I believe it was exacerbated by it (probably due to hormonal fluctuations in the body post stem cells). I have endometriosis, which causes extremely painful and debilitating menstrual cycles. However, through my exploration of energetic medicine in the last six months (including Emotional Freedom Technique, meridian therapy, Eden Energy Medicine and others), I have made huge strides. I still have a little ways to go, but not much at all now. This, after 5 failed surgeries, years of hormone therapy and a host of other drastic attempts to gain control of it. I have, by working on myself, gotten completely off narcotic painkillers during my worst 1-2 days a month that I had to use them, and am unbelievably impressed with this work. I have gone back to school to become a practitioner myself, and have seen incredible results with those I've shared the techniques with, for both physical and psychological symptoms.

But as for Lyme, I bid it farewell a long time ago, and frankly, I never expect to see it again. It has taken much for me to stop peeking around corners every time something doesn't feel 100% right in a very normal way (being tired after a long day, something I ate disagreeing with me, etc.). But I have done it. I am far more likely to think of 20 things it might be when I have a little headache, before Lyme ever crosses my mind.

When recovery happens quickly from a chronic condition, normalizing your life to meet it becomes a whole new ball game. One that takes time. Admittedly, sometimes I'm in it, even this many years later. But I can say without doubt, there is no game I'd rather be playing.

Permalink | 8 comments | amybscher's blog | Channel: The India Story

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Embryonic Stem Cell Treatment: 6 Months Later

Kyla Puklus — Wed, 16 Feb 2011 01:23:45 +0000

By Kyla Puklus

It's been 6 months since my last stem cell injection.

Today, I realized that my immune system is slowly improving because I woke up with a sore throat and stuffy nose. Wait, doesn't that mean it's not working?! Well, waking up with a cold made me realize that I haven't gotten all of the cold and flu viruses that have been going around this school year.

Being a teacher, we are usually hit the hardest as far as germ exposure goes. But this year, I feel like I've been dodging bullets. I think this year my armor is stronger. This year, I didn't get wretchedly sick during the Winter Break like I normally do. I haven't even gotten the flu that's been circulating over the past few months.

Here's the scientific evidence my immune system is improved:

My CD57 results came back. A few years ago, my level was at 53. As of my last blood test, my level is at 180!! (People with Lyme are said to be lower than 100, and most people are around 200-300, supposedly.)
I haven't gotten a cold sore. Normally, I get cold sores (herpes simplex I virus outbreaks on my mouth) every few months, and I especially get them when I'm sick. As many can relate, cold sore outbreaks are painful and embarrassing. I've had ONE small outbreak since September, and it didn't even get big enough to see. It was just a small red patch that never blistered. It tingled, burned, then dried up and flaked off before even becoming really visible. It felt like a miracle; normally it is big, red, and painfully blistered and takes weeks to go away.
I am no longer taking naps in the afternoon. Instead of staring off into space with a glassy-eyed expression from 1 p.m.-5 p.m., I am working.

My improvements didn't happen overnight. I wish I could just wake up tomorrow, jump out of bed and feel no pain. (Don't we all?) But the improvements are slow and gradual. They are similar to the days when you wake up and realize that you are happy, or that you really love someone. Or the days when you realize that everything is okay, even when it's not how you think it should be. Today is one of those days, even though I'm sick. Today I am 'sick' like a normal person would be sick.

Permalink | 7 comments | Kyla Puklus's blog | Channel: The India Story, Lyme Disease

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Embryonic Stem Cell Treatment: 4 Months Later...

Kyla Puklus — Wed, 06 Oct 2010 03:44:38 +0000

By Kyla Puklus

4 Months Later…

Hi, my name is Kyla. It's been two months since my last confession. OK, a little Catholic humor. Forgive me. (Also Catholic humor. Sorry.) I have been back home in the U.S. since August 19th and have been moving fast ever since. There are so many things that I had planned to blog about (the last month at Nu Tech, mainly) but it seems likely the most important topic right now is how I am doing.

After returning home, I had about a week or so to adjust before beginning teaching. Lucky me, my classes were PACKED. I was teaching 260 freshmen a day with no break. Things have calmed down a bit, but I had to go into "survival mode" to make it through September. It seems crazy to work so hard after returning, but with a lot of support and rest, I managed OK.They have hired a new teacher, so now my classes are much more manageable. (It might seem crazy to work, but keeping my job has become equivalent with keeping my sanity. I'm holding on dearly.)

Aside from being tired and emotionally exhausted, I have two main improvements to officially report: Increased energy and cognitive processing! Or in simpler terms: I'm not as drained and my brain is working better.

I no longer need to take naps in the afternoon. Last May, I could barely make it through the day before I sat on my couch in a semi-coma for a few hours trying to recover enough to actually get ready for bed. I am still in a lot of pain, but I have the energy to make it through a normal day. About once every week or so, I do find myself completely wiped out still.

(Lyme patients know what I mean when I am talking about fatigue. Fatigue is not just being tired like everyone else from living, but a type of extreme exhaustion that is usually a result of a medical condition. Fatigue is a type of energy loss that drains you from your core.)

The second obvious improvement is the increased mental function I have experienced. Last May, I found myself avoiding phone calls and social interactions that required me to put together authentic, coherent sentences. I would get lost in my thoughts, forget simple words necessary for a basic explanation and generally exhaust myself trying to put together a paragraph. It was embarrassing and discouraging.

But now…"I'm baaaack." I'm not avoiding my friends and family. I am answering my phone. I am meeting people after work. I have original thoughts and I can get out what I need to say. I am writing this blog in half the time as before.

I wish I could write that my pain has decreased or that I don't wake up every day feeling like I played football the night before, but I've been reassured that nerve regeneration takes time. Some people report a decrease of pain even while they are at NuTech, and although exercise in physio and rest in my room helped, my pain is still fully present.

In the meantime, I have taken up swimming! With the increased energy and the need to keep my joints moving, swimming has become an easy, low-impact way to drain the lymph nodes. I proudly squeeze on my silicone cap, tighten my silly-looking goggles, waddle out to the pool deck in my flower bathing suit, and thank the Universe for every stroke.

More to come...the last month at NuTech, I swear!

Permalink | 6 comments | Kyla Puklus's blog | Channel: The India Story, Alternative Treatments, Drugs & Treatments, Lyme Disease

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Embryonic Stem Cell Treatment: NuTech "Procedures," Part I

Kyla Puklus — Wed, 11 Aug 2010 16:12:07 +0000

By Kyla Puklus

"Procedures," Part I

The most dramatic and involved way to receive stem cells here at Nu Tech Mediworld is by what is known as a "procedure." Procedures are different methods of injecting the stem cells into your spinal cord, spinal muscles, or neck area. These procedures are much more involved and are only done by Dr. Ashish Verma, who is the main doctor here besides Dr. Geeta Shroff herself.

I have toggled back and forth in my mind about discussing the different procedures I have experienced, mainly due to the fact that I don't want to scare anybody off. I can make them sound dramatic and scary, I could be vague and elusive or I could make them sound like 'no big deal.' I've asked other patients and have received mixed responses; many fear that telling about 'procedures' might shy people away from coming; others say, why not? It is a large part of the treatment here.

So, here is my disclaimer: I am just one person out of many who have received these various treatments; everyone here has different symptoms, ailments, pain tolerances, outlooks on life and healing, senses of humor, etc. No amount of words can truly describe any event and each person has a different story. It's only my story.

My First Procedure

The doctors and support staff meet about you and your progress daily. Then they decide what kind of 'procedure' you might benefit from and when. You are often told that you are having a procedure only the day before! I received my first procedure after about a week and a half after arriving here. I'd heard a little about the procedures, but had not read anything about them, so I didn't know what to expect. My first procedure was what is referred to as a "DSM," or deep spinal muscle, procedure.

A few of the nurses came to my room dressed in scrubs and told me it was time to come upstairs. On the third floor is a sterile 'surgery' room where some of the procedures take place. I put on the gown they gave me, kept my yoga pants on, and went with them upstairs. When the elevator doors opened to the third floor, I was greeted with a cheerful "Hello Kyla!"

I had no idea who was talking to me until a man pulled down his surgical mask and said, "It's me, O.P!" (Which is short for Om Prakash, I later learned.) If you recall, O.P. picked Jessie and me up from the airport! Ha! Who knew he was a surgery assistant AND a taxi driver?! (He's currently my favorite and I'm always happy when I have a procedure and see his face.) Welcome to India.

I removed my Crocs and walked into the clean room, barefoot, and felt like I'd stepped into the 1970s. The room was clean and brightly lit with medical equipment that looked a lot like the set to M.A.S.H. compared to US modern standards. They had me lie down on a narrow table and put a finger doo-dad on to keep track of my heart rate, etc.

Of course, I couldn't help but notice that every time the door opened and closed with nurses coming in and out, the beeping would speed up in anticipation of Dr. Ashish. It was honestly more nerve-racking than the procedure itself. While waiting, I distracted myself by playing with my heart rate: I thought of tropical beaches, camping in Zion, UT, The Grand Canyon, etc, and heard it slow. Then I would think of needles and impending doom, and hear it crank back up!

Dr. Ashish came in about five minutes later, though it felt like five hours (beep, beep, beep), and cheerfully asked me how I was doing? Um, hello! Freaking out?! But he put my mind at ease, reassured me it wouldn't be a big deal, and then had me turn onto my side and curl in fetal position while three people helped push and hold my legs up into my chest.

While in this comfortable position (not), he directed the mega-watt lights onto my bare back and examined my spine, pressing and fingering the vertebrae, searching for some specific magical place that some anatomy student might know about. He was good about telling me everything he was doing as he was doing it, which I REALLY appreciated.

He cleaned the area and warned me about a small pinch, which I think was a needle with some local anesthetics. He then told me not to move and pushed some sort of larger needle into the muscle next to my spine, about midway up my back. I felt extreme pressure in my back from the needle, then more pressure when he pushed fluid filled with stem cells into the area. The pressure gurgled down into my right hip and stayed there for what felt like forever (like a minute, maybe?), while I focused on impromptu Lamaze breathing.

Just when it stopped and I thought it was over, Dr. Ashish hit me with another shot on the other side of my vertebrate, causing pressure down in the other hip. He talked me through it the whole time, asking about the pressure, where it was, what I was feeling, and reassured me I was doing great and it would be over soon.

When we were finished (whew!) and I slowly uncramped myself from the Sow Bug position, they helped me sit up and got me into a wheelchair. I was wheeled back to my room and instructed to lay flat for an hour before I could get up and carry on with my day 'as usual.' I smiled and tried my best to keep my chin up, barely making it to the room. I made it until they closed my door before breaking down in front of Jessie and crying like a little girl. "Today is not one of my favorite days," I whined.

I described to Jessie how the pain wasn't that great, but the awkward vulnerability got to me. It's pain and pressure in an area you've never felt before. Most people do not know what the inside of their spine or hip feels like! I am already in so much pain in my back that any addition makes me 'lose my cool' — and being in fetal position, with your back exposed, is not a fun way to experience pain.

(Quick note: Looking back, they do get easier and less traumatic, once you know emotionally what to expect. Attitude is huge here, and being positive really helps.)

So, I cried myself to sleep and woke up just fine. Later, one of the nurses told me how excited people were to get procedures! How crazy, I thought to myself. It wasn't until my third procedure, when I really woke up feeling better, that I realized how great procedures really are: You get A LOT of stem cells! Duh!

Bottom line: Bring it on.

Permalink | 3 comments | Kyla Puklus's blog | Channel: The India Story

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Embryonic Stem Cell Treatment: The Side Effects

Kyla Puklus — Tue, 10 Aug 2010 16:35:12 +0000

By Kyla Puklus

Stem Cell Side Effects: Each Person Is an Individual

Most of my time here at Nu Tech would be considered by most people's standards as 'boring.' I say 'most people' simply because since Lyme Disease has slowly increased my disability, therefore increasing my ability to be content with doing 'nothing.' I'm rarely bored these days; even doing nothing is often 'something.' I used to be one of those 'busy people,' with my life scheduled in 30-minute increments to maximize productivity: college, work, projects, family and friends, etc. (One of my close friends even nicknamed me "Hummingbird.") Many of you probably relate, I'm sure. So, here at NuTech, I've been very busy doing nothing!

As I've previously written, the routine is simple: breakfast, injection, physio, lunch, physio, injection, bed. Somewhere in between that, I sit in my room and Skype family and friends, email, write, read, stretch, shower, or just talk to Andrea. (We've clocked a lot of conversational miles over the years.) Sometimes I get out for a little shopping, for dinner, or for a short sight-seeing stint. (See bird-nerding pic at Lodi Gardens.)

I thought that my blog would be focused on the medical side of stem cells, but I haven't written much on this topic because, well, not much has happened. I have not experienced any real side effects from receiving stem cells.

Some people with Lyme have said they feel 'wired' the first few weeks, then 'tired' the last few week. Amy blogged about feeling extremely hungry and extremely emotional at times; some people have noted increased sweating. My doctor even warned me, "stem cells will make you hungry and frisky.".A few Lyme patients have talked about nothing happening until the first 5-6 week mark, and then noting a sudden turn around where they notice significant improvements. They wake up one day and just "know they are getting better."

I did have a few days of significant improvement, and I did think maybe I was one of those people, but now that my back is hurting today as I sit here, I realize that I am not one of them. Don't get me wrong, I'm not saying that I don't think it is working or that I won't heal; it's just not happening drastically, which, from a scientific perspective, doesn't surprise me at all. Stem cells take time: nine months to three years. In the meantime, from a medical perspective, I have not noticed any real side effects from a day-to-day basis.

There are certain situations that do bring about side effects from stem cells, but these are more intensive, and are, for me, probably caused by the various methods of receiving the stem cells more so than the stem cells themselves. The least invasive way to receive stem cells is via injections, given here twice daily. These injections are sub-cutaneous (although people keep referring to them as intramuscular, which is incorrect) and can be received in either arm or somewhere else if requested. (I have been getting mine in my hip lately.)

Depending on the patient's condition, stem cells can also be infused in an IV drip, which can tax the body and increase fatigue. I receive an IV drip with stem cells about once a week, on average. Most of the time, I feel fine after. The most dramatic and involved way to receive stem cells here is by what is known as a "procedure."

"Procedures" are different methods of injecting the stem cells into your spinal cord. These procedures are much more involved and are only done by Dr. Ashish Varma, who is the main doctor here besides Dr. Geeta Shroff herself. As you can imagine, these procedures would cause some 'side effects,' but again, I believe it is not the stem cells but the invasive application that causes the side effects. But this is just me. I do notice, however, that my condition improves drastically, right after a procedure. I have had four types of procedures since I have been here, but each and every patient who comes here is different, with different stem cell needs. There's no point in comparing notes in who got what procedure and why.

Coming up: more details on procedures themselves, my latest CT scan, the life of a 'caretaker' here, and (hopefully) and updated improvement list…

Stay tuned.

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Embryonic Stem Cell Treatment: The Week 3 Improvement List

Kyla Puklus — Wed, 04 Aug 2010 16:22:41 +0000

By Kyla Puklus

Week 3: Jessie passes the baton to Andrea as I slowly acknowledge some improvements.

Okay, so it's not really week three. It's more like week six and I'm totally behind on blogging! Very sorry! (I'm having college flashbacks of procrastination and excuses.) I had high hopes to blog regularly and chronologically, so my story would be fluid and helpful to future patients, but alas, I failed.

I think the big question everyone would like to know first and foremost is, "How I am doing?" so I'll start there. I have had some ups and downs and I think the expression "two steps forward, one step back" applies quite nicely. When I arrived, I left California in a state of chaos; it was the end of the school year and grades were due (I teach high school), graduation, my birthday, packing for India, fundraising and money issues, etc. I was exhausted and in incredible pain. I was overwhelmed, scared, excited, apprehensive, determined and, in many cases, dazed and confused. So, it needs to be said that any sort of relaxation would help improve my condition.

When I left CA, my symptoms were:

Lower back pain, upper back pain, shoulder pain, lyme fog, twitching a few times an hour (similar to Tourette's Syndrome), light/sound sensitivity, wrist/arm pain, right knee pain, facial numbness/tingling, fatigue, serious word loss, and a hard time putting sentences together.

Improvements by the third week:

Twitching stopped. Wrist/arm pain improved (I could actually stop sleeping on my arms/hands for compression, which I often did to ease the throbbing.) Right knee stopped hurting and I could slowly begin to take the stairs. Facial tingling stopped. Word loss improved.

But like I said, rest and de-stressing also helped; I'm sure of it. The real milestone is still ahead: Waking up without feeling like a Mac truck has hit me and being able to bend over without being in pain. That's my ultimate goal.

In any case, Jessie and I managed to get out and do a few fun things around my physio and injection schedule. We managed a short stint one Saturday/Sunday to the Taj Mahal (long drive in a taxi-van, but totally worth it!) and even gave an Ayurvedic massage a try. It is NOT relaxing, but a cultural experience nonetheless; imagine two women rubbing your body up and down with hot oil in a rapid, synchronized pattern as you lay on a hard, wooden table, holding on in a super-man position, trying not to fly off the table for like 45 minutes! It's, um, interesting?

Jessie left at the 2.5-week mark and I spent a few days alone Skyping friends and reading before my long-time friend Andrea arrived. She will be here for the remaining five weeks! (Well, two weeks left now.) How lucky am I to have not one, but TWO friends who were willing and able to come and help take care of me?! They made many serious sacrifices and alterations in their life to be here for me and I am truly grateful. It is mandatory to have a caretaker here with you, and besides the money, it is often the hardest aspect for most people. But rest assured, it really is necessary. (I have some perfect examples of why this…stay tuned for an up-coming blog about my migraine fiasco!) Having Jessie and Andrea here has made all the difference in my attitude and overall well-being and mental health. Sometimes we forget how much we really do need our friends!

Upcoming topics: Stem cell '"procedures," 6-week improvement list, the exorcism of a migraine demon, the life of a caretaker…

Permalink | 5 comments | Kyla Puklus's blog | Channel: The India Story

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Embryonic Stem Cell Treatment: Week 2, Part 2 -- Why Do "Healthy" Test Results Get Lymies Down?

Kyla Puklus — Tue, 20 Jul 2010 03:01:15 +0000

By Kyla Puklus

Week 2, Part 2 — Why do "healthy" test results often make Lyme Disease patients feel sad?

Why are Lyme patients so sad when they hear their tests results are "normal"? It seems like such a crazy response; wouldn't you want to hear that you're healthy? Many of you already know that many Lyme patients do not find out they have Lyme Disease until it has become "chronic," often because their doctors found nothing wrong with them initially.

They called us "healthy," "normal," and sadly, have even told us it is psychosomatic. Like any of us would want to be in this much pain or this ill! One woman I met couldn't even get out of bed to use the bathroom and doctors were still telling her nothing was wrong with her! (Many Lyme stories are filled with so much tragedy, it would take a novel to do them any sort of justice.) It's a common theme in Lyme Disease with many books, blogs and threads written about it, including a fantastic documentary on the controversy of Lyme called Under Our Skin. Having an "invisible illness" makes us very sensitive to people not understanding or believing us, especially our own doctors.

Lyme Disease is not a Syndrome, with no known cause or cure. It is a bacterial infection from a living organism. I've even heard a doctor say that he doesn't believe in Lyme Disease. What is there to believe? Imagine going into a doctor's office with a very sore throat. They look at your throat, listen to you explain your symptoms, then prescribe an antibiotic for Strep Throat (Streptococcus pyogenes, a bacterial infection.) Sometimes, the doctor will even take a culture to make sure, although these can result in "false negatives." In any case, imagine taking those antibiotics until they are finished, and then still having a sore throat.

Now imagine going back to the doctor and having him say, "The antibiotics should have worked. You do not have Strep Throat anymore — you must (because there is no other explanation) now have chronic pain in your throat as a result from the previous infection. You will suffer for the rest of your life from this ongoing, varying pain in your throat from the infection that you used to have, or think you had."

Of course, in most cases, this would be ridiculous. Most doctors would assume that the infection is obviously still present. But this is not the case with Lyme. Many doctors don't "believe" in a chronic Lyme infection, like it's a ghost or an extraterrestrial phenomenon.

Why, you ask? So many reasons: Fear. Politics. Frustration. Misinformation. Lack of training. Laziness. However, Lyme Disease is obviously not as simple as Strep Throat. It is a complicated disease that many doctors are not trained to treat. In other cases, people have found amazing Lyme literate doctors (LLMD's) who punch more hours on their time card than tick bites in Connecticut.

That being said, you can imagine now why Lyme patients need tests to show people, "Hey! I'm sick!" It stems from a deep desire to be understood and to need people to help us. Trust me, we've tried to help ourselves. And this can lead us to be sensitive to doctors not believing us, even when they've shown us that they are on-board and understand the intricacies of Lyme. Even when we've flown halfway around the world for a controversial treatment like stem cells!

So, when Dr. (Sudeep) Sharma (I never know whether to call doctors here by their first name or last name, since many seem to say their first name, but still say "Dr."…like I would be Dr. Kyla? Anyway…) came in to tell me the good news that all of my internal organs including my heart seem healthy, I almost felt a little sad. These are not necessarily tests that indicate Lyme, but the irrational emotion still creeps up. But instead of insisting that I am, indeed, unwell, I just sat and smiled. This doctor knows what I've been through. This doctor welcomed me from the other side of the planet and is fighting to get me well!

No, I am very happy to hear that all of my testing from last week (except low thyroid and the SPECT scan as previously discussed in my first blog) indicate a healthy body, as this means that I am at a great position to receive stem cells. I will show more improvements and am more likely to heal faster since I don't have as much damage to repair than other patients who come here. This is, indeed, good news.

Yesterday, I went to a local Bazaar called Dilly Haat, where a nice man offered to take pictures of my comrades and me. He struck up a conversation, cheerfully asking why we were in Delhi. Christine, who is in a wheelchair with Lyme, explained that she was receiving stem cell treatment and then pointed to me and said I was a patient as well. His response was simple: "Why? She looks healthy to me!" Yup, I do. It's our Achilles' Tendon. Normally, when people say this to me, I think to myself, "HA! Wait until you see what I look like when I'm healthy!" But this time, it didn't bother me. I just smiled and nodded; I understood. I felt peaceful about it. Soon, it won't matter anymore.

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Embryonic Stem Cell Treatment: Week 2 -- The Emotional Side Of Exercise And Lyme

Kyla Puklus — Tue, 13 Jul 2010 22:00:24 +0000

By Kyla Puklus

I am finally starting to get into some sort of daily routine: stem cell injection, physio, lunch, physio, stem cell injection, dinner, bed. After speaking with Dr. Sudeep and Jyothi (Hospital Manager Extraordinaire) about what to expect with physical therapy and how long it should last, I find that they are surprised I am only going for 15 minutes. This is, indeed, a mistake and is corrected the next day by my first full sessions: 10 a.m.-11 a.m. and 2 p.m.- 2:30 p.m. Monday to Friday, and Saturday mornings only. I feel a bit of dread in my belly as I hobble down the stairs to the basement/physio room.

My trainer, Rahul, is waiting for me with a friendly smile on his face and I begin with some yoga stretches. I'm trying my best not to look as self-conscious as I feel. People around me are each working with their own physical trainer and receiving their own individualized physical therapy plan; one girl has a severed spinal cord from a broken neck and works on strengthening her shoulders; another man works on lifting his legs and walking in a straight line after ALS (Lou Gehrig's disease) has damaged his nerve function; another woman is walking with calipers (leg braces) trying to regain function in her legs. I, like many Lyme patients, am "healthy" looking — my pain is invisible. Are they wondering why I'm here?

I work through some leg lifts and knee extensions as Rahul attempts some friendly conversation: "Do you like fast food?" Uhg, really? Like I didn't already feel fat enough! I kindly answer that no, in fact, I don't actually; I eat healthy food — just a lot of it. Ha! Then I try to tell him that I used to be "athletic," or at least active: I played softball in high school, karate in college, kickboxing, running, hiking, backpacking, etc. Sadly, he seems kind of surprised. (Sigh.) I try to keep my chin up and tell myself I can feel sorry for myself later when I'm back in my bubble upstairs.

We continue through the leg-lifts, side-lifts, modified sit-ups, yoga "cat/camel" stretches, back-lifts, and other various pilates-type moves before moving on to small weights. I slowly work my triceps and shoulders and then finish with modified hip thrusts/squats, which I do while leaning my upper back and neck on a large rubber ball like the ones you see in gyms and sporting goods stores.

I hobble my way back to my room, taking the elevator even though I feel foolish because I am capable of waddling up some stairs (Rahul told me no stairs until the tendon on top of my right knee cap is better). When I walk in, Jessie asks me supportively how it went and I begin to sob. In the safety of my room, it's time to "cry it out" and discuss what the real problem with physio is: pain and ego.

Every person with Lyme is different. Many factors contribute to the disease and it really should be called "Tick-borne Illness" or something because when a tick bites a person, they usually contract more than the Lyme bacteria (Borealis burgdorferi). Most people also contract co-infections such as Bartonella a.k.a "Cat-Scratch Fever" (another bacteria) and Babesia (a protozoa), which cause other various symptoms. So a person's symptoms and degree of disability can largely depending on how long a person has been infected, the type of co-infections they have, and the strain of Lyme and/or geographic location they were bit. I have had Lyme disease and the aforementioned co-infections for about six years. The list is long, but my symptoms largely manifest themselves as lower back pain, joint pain, muscle pain, fatigue and twitching.

Over the years, I have fought pain, ignored pain, embraced pain, and eventually gave in to pain. A person like me who is in constant pain finds ways to minimize discomfort so they can continue surviving. You learn to prioritize: If I do this, then I will not be able to do that, because I cannot do both. These are often simple things that most people in their twenties would not worry about; dishes, laundry, shopping, etc.

So, why am I emotional about having to do physio? Because it hurts. Because I used to do all of these things. Because I look like I should be able to do all of these things. Because I feel like it's my fault that I don't anymore. Because I gave up exercising after my last back-packing trip last summer. Because I feel like my weakness is a reflection of me.

As Jessie and I discuss this topic, she reminds me that it doesn't matter what anyone thinks and that I am here to get well. If I'm out-of-shape, so what? Isn't that the point of being here? Aren't I trying now? Yes, it will hurt. But it's okay because it is going to help me get better: It will actually help my pain! And I don't have to balance all of the things I normally do on a daily basis on top of the exercise. All I have to do here is work on getting better. My priorities here are to get my stem cell shots, exercise, eat, and rest.

By the time we finish talking this out, it's time for me to go back downstairs for round two. This time, I fake a smile and declare sarcastically, "Bring it on!" Like my Mom always says, fake it 'til you make it!

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Embryonic Stem Cell Treatment: Day 5-7 -- Leaving The Nu Tech "Bubble"

Kyla Puklus — Wed, 30 Jun 2010 16:23:19 +0000

By Kyla Puklus

Day 5: Friday, June 18th, 2010

Not much happens today. At 10 am I go to my “physio” session. (This is what they call the physical training here.) It is supposed to be for 45-50 min, but at this point it is more like 10-15 min. I start by stretching a little and then moving my legs or arms with small amounts of resistance. My afternoon sessions will start soon.

Jessie goes to Yoga from 4:30-6 pm down in the physio room, which is offered three times per week. They bring in a yoga instructor from a local studio and while some of the moves are similar to yoga studios in the US, much of it is a new experience. They urge me to go, but at this point, I feel tired and sore from, you know, existing. (I’m planning a post soon about the psychology of physical therapy and Lyme pain.)

Tonight NuTech arranges for the patients to have dinner in lobby @ 6:45 pm. This basically means we all go downstairs to the small lobby where they bring out a folding table and a few chairs. We don’t all fit around the table, especially with the few wheelchairs we have, and people awkwardly try to sit together. The food is brought out sporadically on trays (where are we going to fit these trays?), and none of us are sure whether to wait for each other or to just eat. We try some conversation which usually begins with a “so, what’s your ailment” kind of question.

Jessie later comments that she is surprised how nosy and blunt people are when asking about each other’s personal illnesses, but we both realize that, well, why not? It IS the reason we are all here, and we’re all wondering anyway. All of us have come from relatively far away places and have spent large sums of money to be sitting around that fold-out table. Besides, as you know with a lot of Lyme disease cases, we don’t look "sick," so it’s common to wonder. The nice thing is, most of the patients here know at least a little about Lyme disease from previous patients who arrive and go at staggered intervals, so this is a Lyme-friendly place.

None of us really ‘bond’, but the ice-breaker is good and sets the foundation for future interactions.

Day 6: Saturday, June 19th, 2010

Today is Saturday, and the physio room is only open in the morning and is closed in the afternoon and on Sundays. My session is still only 10 minutes long. The lazy and in-pain side of me wants to keep mum about it, but the "I spent a lot of money and time to get here and heal" side of me wins with logic; I make a mental note to talk to Dr. Sudeep about it.

This afternoon, Jessie and I went on our first outing to Basant Lok. (All of the neighborhoods here are named, and we tell these seemingly "code-words" to the auto-rickshaw drivers with the hopes that they know where it is. Driving from one neighborhood to the next here in Delhi is like jumping on a boat and traveling between islands. In this sense, you don’t want to walk in between.)

Once there, we tried our first Mc Veggie sandwich from McDonalds. I feel like it’s an American-Vegetarian rite of passage; although, greasy French fries don’t hurt either. The sandwich is pretty tasty, but what strikes me more is how people in India stand in line. Or, don’t stand in line, actually. Jessie and I patiently wait for our turn as people walk right in front of us and order over us like they didn’t see we existed. After the third time this happens, we learn to stand so close to the person in front of us that it is no longer possible to "cut." I guess this should not be too surprising given that this is how people drive as well.

After McDonalds, we find a coffee in shop modeled after Italy. I know, we’re not exactly embracing the new culture, but in my defense, even being here is enough. It’s nothing like my travels through Europe. Anyway, the coffee shop contains mostly world-traveler people who seem to have been elsewhere besides India. I think it would be too expensive for the locals. I’m excited to caffeinate myself and savor my latte.

After the coffee-fix, we head into a nice, air-conditioned clothing shop where we enjoy a shopping frenzy of beautiful Kurta’s and other frocks. It’s a no-haggle kind of place and the perfect spot to ease into retail-therapy. We take our "booty" back to our happy, orange-tastic room and buzz about what a good day it’s been. We’re still asleep by 8 pm, of course.

Day 7: Sunday, June 20th, 2010

I relax most of the day (no physio on Sundays — oh darn!) while Jessie goes on small adventure back to Basant Lok to pick up my stainless steal water bottle I left in a store that sells sunglasses and to get her eyes checked. (An exam is cheaper here, but frames cost about the same as in the US.) I’d called from the front desk when I realized I’d left it and was so happy to hear they were saving it for me. The funny thing was, I’d made a point out of not giving them my personal information when I bought a pair of sunglasses…but the joke was on me because they couldn’t call me to tell me I’d left my water bottle. Ha! Oh well. They were very nice.

Later in the stairwell, we run into Jamie who is a caretaker for a woman here with neuro-Lyme and MS named Aliyah. Jamie invites us on a dinner outing to say farewell to Amanda Boxtel (who is leaving the next day, this being her 6th time here). Amanda ends up not being able to come, after all, but we still join Jamie/Aliyah and a woman from Iceland named Olaf with her daughter Rebecca. (Rebecca is here to repair brain damage from a car accident back in 2003).

We all meet outside in front and discuss how to get to the restaurant. They deal with the complications of loading Aliyah’s wheelchair into the taxi while Jessie and I hail an auto-rickshaw. The place is in a neighborhood called The Defense Colony and it takes us about fifteen adventurous minutes to get there. Jessie and I offer to get a table ready while they unload the wheelchair and such in a traffic-laden lane. How hard could it be to walk 100 yards to the building with the name of the restaurant clearly illuminated? I’m determined to be helpful…

We sit in a nice and small, albeit empty air-conditioned restaurant named Saagar Ratna and order fizzy water while waiting for our new friends…

We wait.

And wait.

And…why is Jamie outside still? Do they need help with the wheelchair? Uh oh…

Apparently, there are TWO restaurants named Saagar Ratna, which are THREE DOORS DOWN from each other. This restaurant serves northern Indian cuisine while the other serves southern Indian cuisine. I whine to myself, “Why? Whyyy?” We sheepishly pay for our water and walk down to the other restaurant, which is clearly better since it has a lot more people in it (even though is does not have air-conditioning, only fans). We shuffle around like elephants in a closet until finding the right table arrangement and begin to decipher the menu.

I proudly order a Mango Lassi (mango-y yogurt-like shake) and an Onion Dosa Masala, feeling smug that I know a little bit about Indian food. Jessie goes for the gold and orders a Thali (which has small bowls of like 7 different things) and the others also order either a Dosa or something similar. By the time we leave, the place is PACKED and people are crowding outside to get in. A guy at the door shouts to another guy in the restaurant like every minute or two: we think a brawl is brewing, only to later realize that the shouter indeed works there and they are determining how many tables are free.

I make a mental note to avoid Sunday nights; they are busy nights for restaurants since it’s a day off for people who usually spend it with their families. Their hungry families. Families who want to come to this place, who don’t stand in any sort of line but just crowd at the door. Getting Aliyah and her wheelchair out is a circus, but we power through it, working together like the secret service. The sidewalks here are a nightmare for wheelchair or walking-impaired individuals. Aliyah is a model of patience and humility and I’ve decided that there must be a whole heaven containing silent, frustrated screams from her; I’m continually amazed at the resilience of the human spirit.

Bellies full of spicy food (Rebecca drinks 3 Mango Lassi’s to counter the heat), we head back to our safe, happy, air-conditioned bubble and call it a night.

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