The Continuing Fight to Save Rose

Hi my name is Tani and I am Rose’s mom. Rose is suffering from late stage, chronic Lyme disease.  She has been suffering with this insidious disease for the last thirteen years, since she was fourteen years old and as a result has missed  out on most of her youth.

Many of you that have been following Rose's story know that we took her to a clinic in Mexico just south of Tijuana last year for fifteen weeks of treatment. Well, a few months after returning from Mexico Rose was retested for Lyme disease by Igenex labs in California.
 
The result was negative and we were hopeful that the worst was over and she would now start feeling better. Unfortunately that was not the case and I have since learned that false negatives are very common in serum Lyme tests because of the spirochetes ability to hide in organs and tissues so that  no antibodies show up in the blood.

Not only is Rose’s physical health continuing to worsen, but her mental health has become affected as well, which is very common in late stage Lyme disease.  She is suffering severe anxiety, depression, and major brain fog and memory loss. She has lost interest in everything she used to enjoy like, drawing, reading, crafts, video games and can’t even focus long enough to watch a TV show. Her personality has completely changed these past six months and she knows it. She says she feels like “Rose is gone.” It is so sad to watch my daughter fade away before my eyes.

Below is Rose's story:

Rose had a promising future, excelled in school, had goals and big dreams for her future until a bite from a tick changed it all.

It started with heartburn and then acid reflux, which led to food coming up to the point that within a couple of years, nothing would stay down. Rose couldn’t even make it to the bathroom when she had to throw up, so she kept a bucket with her and wouldn’t eat during the day, just so she could go to school. 

During this time, she was of course losing weight and we took her to various doctors and specialists where she had numerous medical tests, which showed nothing was physically wrong with her. She was labelled as a bulimic/anorexic, even though I explained that she wasn’t vomiting on purpose. An anorexic or bulimic hides her illness and does not walk around with a bucket and throw up in front of her family. The doctors wouldn’t believe me. 

It was while I was studying for a medical terminology course that I came across the term, “Gastroparesis,” which means paralyzed stomach. I had never heard of this condition before so I did some research and discovered that the symptoms were exactly what Rose was experiencing.  I convinced a specialist to test her for it and even told him what type of test she needed, which was a nuclear medicine stomach emptying test. The test came back positive for severe gastroparesis, but no one could tell us what had caused it. They labelled it as “idiopathic,” or no known cause, and told us her stomach was pretty much useless and all there was to do was just monitor her blood levels and gave us no advice or help besides weekly blood tests. 

Rose’s weight plummeted to 71 pounds, yet she still managed to graduate from high school, but of course college and all her other dreams were out of the question. None of the specialists we saw knew much about gastroparesis, let alone how to treat it, and didn't seem to take it seriously.

I continued my research and found out about an Enterra therapy gastric electrical stimulator that was being used to treat gastroparesis successfully for several years in the US, but in Canada was only implanted by a couple of surgeons for patients with type 1 diabetes, who often develop Gastroparesis.

I narrowed down a surgeon in Montreal and convinced him to implant one of these devices in Rose.  So in February 2009, we made the trip and were there for one month. The surgeon also implanted a feeding tube at the same time, which helped Rose to slowly gain weight and she eventually got up to 95 pounds. 

After almost two years of trying different settings on the device and even making a trip to Mississippi to see the foremost doctor in this type of therapy, where Rose saw him daily for a month, she turned out to be one of the 5% of gastroparesis patients that this device didn’t help and so we had to have it removed. We couldn’t find a surgeon in BC that would remove it, so we had to travel to Calgary, Alberta for the surgery. Now we were back to square one and didn’t know what to do next.

In the meantime, now that Rose wasn’t eating at all and relying solely on tube feeding, she couldn’t even digest her own stomach acid and would throw up a litre or two of it a day, which led to her needing 23 crowns and 19 root canals over a three year period. After all that pain and suffering, she ended up having to have all her teeth pulled in 2012 at the age of 23 and now has full dentures. 

Of course I continued my research and came across an online support group for Gastroparesis and through that found out about several people who had total gastrectomies and were able to eat again, even though it was small amounts throughout the day and certain foods had to be avoided. We looked into this very thoroughly because removing your stomach is not to be taken lightly. Once we decided that this was our only real option, we needed to find a surgeon. 

It turned out that none of the GI surgeons in BC were willing to do the surgery on a patient with gastroparesis and only treated patients with stomach cancer, so we began to look outside of our province and once again had to go to Calgary.

Rose had the surgery and after a month of horrible complications and infections we came home. It has been almost three years now and unfortunately Rose is still unable to eat and still tube feeds for nutrition. 

It turns out that the surgeon who removed her stomach left an 8 cm pouch of stomach because it is stronger than attaching the esophagus directly to the intestine. Unfortunately that small pouch of stomach still has gastroparesis and that is why she is unable to eat. Because Rose is so frail right now there is no way that she could survive another surgery to remove the last portion of her stomach, but we are hoping that in the future it will be an option so that hopefully she will be able to eat again.

Now I must go back five years ago to when Rose dug a tick head out of her leg while we were sitting outside on our deck. She first noticed the lump on her thigh when she was about fourteen. It was a small lump and because she had another small lump in her arm (still has it) and the doctor told her it was just a calcium build up she thought that was what the one on her leg was.

As the years went by it got itchy and closer to the surface and looked kind of dark. She started to pick at it over the period of a couple of weeks. She saw white at the surface, but could see something dark underneath. So finally one day got the tweezers and picked out a hard white thing (probably a calcium build up) and discovered something dark and squishy underneath. We immediately thought it might be a tick and went inside and did an image search of ticks and tick heads, knowing that sometimes when you get bitten by a tick the body will get knocked off, but the head stays inside. Sure enough the thing she picked out her leg looked exactly like the images we saw. We had heard of Lyme disease, but didn't know much about it, so I did some research and discovered that Lyme disease can sometimes cause digestive issues including gastroparesis!  .

So we went to our doctor and asked if Rose could be tested for Lyme disease. The doctor said she doubted Rose had Lyme disease, but I convinced her to test her. The doctor ordered the standard Canadian test (the ELISA, which we have since found out is not very accurate and most often comes back with false negative results.) It did come back negative, so we moved on and continued to explore other possibilities.

About two years ago a friend of ours was diagnosed with Lyme disease by Igenex lab in California. This particular lab specializes in state of the art research and clinical testing for Lyme disease and associated tick-borne diseases. We sent away for a test kit from the same lab, had the test done and the results came back 100% positive for Lyme disease, not only by the lab’s standards, but by the US Center of Disease Control standards, which is very rare.  We even received a phone call from the President of Igenex labs telling us that Rose had severe, late stage Lyme and that we should seek immediate treatment.

Right around the time we got the results back Rose developed a non-stop excruciating headache and to this day is still taking narcotic medication that barely even touches the pain.  She has had tests including an MRI and the doctors can offer no explanation for the headache.  Headache is a very common symptom of Lyme disease.

Looking back and trying to figure out when Rose might have been bitten by that tick, we remembered that back when she was fourteen, we lived in an area known for deer ticks and she used to cut through a grassy, wooded property when walking to her friend’s house. It was shortly after that time that her early symptoms began to appear. 

Our  doctor doesn’t believe that Rose has Lyme disease, in spite of the 100% positive test result, but there is no doubt in my mind that Rose has been suffering from Lyme disease since she was fourteen years old. Through my research I have found out that Lyme disease can attack the entire digestive system and cause among other things, not only Gastroparesis, but also intestinal malabsorption.  Rose had already lost her stomach to this insidious disease and it was now moving down her digestive tract causing her intestines to stop absorbing normally.  Now we had a diagnosis, but no idea what to do next.  We were on our own in trying to figure out how to go about treating the Lyme and most likely one or more co-infections.

I discovered that many people think Lyme disease can be cured with antibiotics and this is sometimes the case. Through my research I found out that if Lyme disease is caught in the very early stages, most people are cured with a three week course of antibiotics. Rose had been infected for eleven years at that time and was well into the chronic, late stage of Lyme.  Mainstream medical doctors cannot prescribe more than three weeks of antibiotics because any more than that is considered experimental for Lyme. Patients who want to try long term antibiotics have to go to a naturopath, who are now able to prescribe antibiotics here in British Columbia. After more research I learned that antibiotics have limited success in late stage Lyme disease. It is this lack of success in long term cases that fuels some of the controversy that rages over treating Lyme patients in the mainstream medical community.

Because Rose was already dealing with damage to her digestive system, we felt it would be a huge risk for her to take antibiotics and possibly damage her intestinal health even further.  She was no longer absorbing properly and her weight plummeted down to 68 pounds in spite of tube feeding 2300 calories a day. 

About fourteen months ago switched from her commercial tube feeding formula that is made mainly from maltodextrin, corn syrup and added vitamins to formula from the US that is a liquefied, organic whole food, plant based, dairy, soy, sugar, gluten, corn, GMO, BPA free, but there has been no signifigant change in her weight, however there have been other improvements such as slightly better blood tests and improved bowel function.  

Unfortunately this new formula is not approved for distribution in Canada at this time (I am working on that!) so the government will not pay for it, which they did the sugar laden GMO one she was on before.  We order it directly from the company and pay for it ourselves, but is very expensive- $1500 a month.  Rose is also on about $500 worth of supplements.   Our doctor says that he has never seen anyone survive at such a low body weight for as long as Rose and we attribute that to the formula and supplements.

After realizing that in Canada Lyme disease is very controversial and doctors do not really recognize or treat it, I found out that most people have to seek treatment in other countries. There are some alternative therapies available here in Canada, but just like the treatment out of country they are not covered by our health care and can end up costing many thousands of dollars. 

We had no resources for funding treatment, but Rose told me about “crowdfunding,” so I decided to give it a try and amazingly raised $23,000 in one month!! We also held several local fundraisers and raised even more money. Now we had funding and had to decide on the best treatment facility to go with. 

After extensive research we chose a clinic in Mexico just south of Tijuana.  

Rose had many different treatments while in Mexico, including 350 million stem cells, some of which that were directly implanted into her spinal column and small intestine,  natural killer cell therapy, gc MAF, neuropeptide therapy, bio magnetic therapy, as well as daily nutritional IV's etc. Rose also had many, many tests done in Mexico including, MRI's, a spinal tap, an endoscopy, etc.  She also had weekly blood tests and her daily IV’s would be adjusted accordingly based on the results. There were two tests that did show some abnormalities, one of which was a genetic diagnosis test that tests for 180 genetic mutations. Rose has 46 genetic mutations that were present, while not all of them are activated. There was a treatment available and the clinic in Mexico was ready to go ahead with it, but we already owed them $25,000 on top of the $23,000 we already spent and it would be another $15,000 for the new treatment. So once again we launched a crowdfunding campaign and raised more money and we headed back to Mexico for 2 weeks. 

A few months after returning from that second trip to Mexico Rose was retested by Igenex labs.  The result was negative and we were hopeful that the worst was over and she would now start feeling better.

Unfortunately that was not the case and I have since learned that false negatives are very common in serum Lyme tests because of the spirochetes ability to hide in organs and tissues and so no antibodies show up in the blood.   

Due to Rose’s extremely low body weight she has not menstruated since she was a teenager, which in turn has caused her hormones to be depleted and that has caused severe osteoporosis.  Our endocrinologist said Rose’s bone scan is the lowest he has ever seen.  She is under the care of a naturopath receiving bio identical hormone replacement therapy, which is also very expensive. 

We rent, have no assets, nothing to sell and I recently had to quit my job in order to stay home to care for Rose now that she requires 24/7 care. We can barely afford her tube feeding formula and supplements and naturpathic care, let alone Lyme treatment.  

I am currently researching several doctors and their Lyme disease protocols, but of course they are quite pricey.  For example we have a phone consult booked for a doctor in California and it costs $150 for every 15 minutes!!

Rose has endured an unfathomable amount of pain and suffering. She has become an inspiration to everyone who has heard her story. If the Lyme disease and possible co infections were killed it is our hope that Rose would begin absorbing again, gain weight, which in turn would help with all her other issues; headache, cognitive impairment, anxiety, insomnia, help her hormones to balance and increase her bone mass.  She might even be able to live out some of those hopes, goals and dreams she once had.  Please help if you can. Every little bit adds up!!

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Tani Schwarz-Gilbert 
Organizer
Sechelt, BC
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