Mother Shares Daughter, Rose’s Battle with Lyme Disease

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Rose’s Lyme Story

*trigger warning

“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.

At the age of fourteen Rose started getting heartburn daily and then acid reflux, which led to food coming up to the point that within a couple of years, nothing would stay down. She 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 had. 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 managed to barely graduate from high school, but of course college and all her other dreams were out of the question. Her weight plummeted as low as 71 pounds during high school (at 5’ 5” tall) and 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 (GES) 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, which is a common cause of Gastroparesis.

I began to search for a surgeon that could perform the surgery to implant a GES and finally found one in Montreal who at that time was the only surgeon in Canada that did this type of surgery. I managed to talk to him (long story) and convinced him to implant one of these devices in Rose even though he only performed 4 of these surgeries a year and only on patients with Type 1 diabetes. So, in February 2009 we made the trip and were there for one month. The surgeon also implanted a feeding tube into her lower intestine called a J-tube at the same time, which helped her to slowly gain and she eventually got up to 95 pounds.

Girl dies of Lyme Disease and mom lives to tell about it

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, (whom I found through research) 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 and several abscesses. After all that pain and suffering, she ended up having to have all her teeth pulled in 2012 at the age of 23.

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. I 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, only on patients with stomach cancer, even though the procedure is exactly the same, so I 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. Unfortunately the surgery was not a success in regards to her being able to eat again because the surgeon who removed her stomach left an 8 cm pouch of stomach (without consulting us) because it is stronger than attaching the esophagus directly to the intestine. Unfortunately that small pouch of stomach still had Gastroparesis and that is why she was unable to eat. Because Rose was so frail there was no way that she could survive another surgery to remove the last portion of her stomach. So her only form of nutrition remained tube feeding.

Now I must go back to ago to a day several years after Rose began symptoms of Gastroparesis, when she dug a tick head out of her leg while we were sitting outside on our deck.

She had first noticed a lump on the back of her upper thigh when she was about fifteen. It was a small lump and because she had another small lump in her arm 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 she 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 cause digestive issues including Gastroparesis! We went to our doctor and asked if Rose could be tested. The doctor agreed (after much convincing) and ordered the standard Canadian test (the ELIZA, which we have since found out is not very accurate and most often comes back with false negative results.) It came back negative, so we moved on and continued to explore other possibilities, as Rose continued to deteriorate, with no help from the medical system.

About four of years later a friend of ours was diagnosed with Lyme disease by a lab in California. This particular lab specializes in state of the art research and testing for Lyme disease and associate tick-borne diseases. We sent away for a test kit, 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.

There is no doubt that Rose had been suffering from Lyme disease since she was fourteen years old and through my research I have found out that, although rare, Lyme disease can attack the entire digestive system and cause among other things, not only Gastroparesis, but also malabsorption.

Right around the time we got the results back Rose developed a non-stop excruciating headache ended up on narcotic medication that barely even touched the pain. She had many tests including MRIs and the doctors could offer no explanation for the headache. I had mentioned to our doctor that I thought the headache could be due to her Lyme disease, but since he didn’t believe she had Lyme disease he made no comment. Rose had to remain on narcotics until the day she passed away.

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 symptoms began to appear.

Many people think that Lyme disease can be cured with antibiotics and this is sometimes the case. Some people get better from antibiotics and some people don’t. One common reason people don’t get better is that their intestinal health gives out before the bacteria do. If Lyme disease is caught early there is a better chance of success with antibiotics, however Rose has been infected for thirteen years and was well into the chronic, late stage of Lyme. She would require long term multiple types (4 or more is common) of antibiotics at high doses. Sometimes anti malaria medication is added as well.

Antibiotics have limited success in these types of Lyme patients. 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. 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 here in Canada (they are now licensed to prescribe antibiotics) which would not be covered on our provincial health care, or go out of the country which would be even more expensive. I know of a Lyme patient who has spent $20,000 in the past two years for treatment at a naturopath here in BC and every time he has stopped the antibiotics his symptoms return and he has to go back on them.

Some people might also ask why not just take probiotics to counteract the damage of the antibiotics. While probiotics may be enough for someone on a single type of antibiotics, such as for a sinus infection, the levels of probiotics needed to counteract multiple, high dose, long term antibiotics is staggering and even with the best probiotics taken diligently, there are still people who have permanent intestinal problems due to Lyme antibiotic use. Because Rose was already dealing with damage to her digestive system it would have been a huge risk to do antibiotics and have them damage her intestinal health. She would then be left with no working digestive system and that would be a disaster.

Unfortunately here in Canada Lyme disease is very controversial and most doctors do not really recognize or treat it, so most people have to seek treatment in other countries, which is very expensive. 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. Our family did not have the means for that expense and then a friend told me about “crowdfunding” so I decided to give it a try and amazingly raised $23,000!! Now we had money, but had to decide the best treatment facility to go with.

After extensive research we chose a clinic in Mexico just south of Tijuana and were on our way there within a month. Between the team of doctors and specialists, both from Mexico and the U.S., their high tech labs, state of the art equipment and unlimited restrictions to treat her, all of the doctors concur that Rose was in much worse shape than we were led to believe in Canada.

After not being properly diagnosed or treated for nearly 12 years, many of her body’s systems had reached dangerously low levels. Every day they all worked together to address each of these life threatening issues one step at a time. The doctors had a clear picture of what needed to be done in order to kill the Lyme and the co-infections and boost all of her body systems, too numerous to mention. We arrived back home in Canada after 15 weeks, although we would have liked to have stayed a few more weeks at the clinic in Mexico for another very important treatment therapy which I will explain, but we had run out of money. As a matter of fact, the clinic was letting us stay and continue treatment on credit for 5 weeks and so at that time we owed them $25,000.

Rose had many different state of the art medical treatments while in Mexico, including 350 million stem cells, some of which that were directly implanted into her spinal column and small intestine, anti-infection Lyme program, 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 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.

The doctors in Mexico thought Rose’s Lyme disease was gone, but in spite of this, twelve years of untreated Lyme disease had taken a major toll on her and she needed all the help she could get to rebuild her taxed body.

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. We also have no idea what co-infections Rose may have had.

Not only was Rose’s physical health continuing to worsen, but her mental health had become affected as well. She was suffering severe anxiety, depression and memory loss. She had become more and more withdrawn, friends faded away and she became housebound. The only time she left the house was for doctor or lab appointments. Her ability to interact with other people effectively was all but reduced to a very basic level. She had lost interest in everything she used to enjoy like, drawing, reading, crafts, gardening, sewing, video games and couldn’t even focus long enough to watch a TV show. Her personality had completely changed and she knew it. She said she felt like “Rose is gone.” It was so sad to watch my daughter fade away and not even know how to relate to her anymore because she was no longer the same person.

Rose was growing weaker every day and had extreme muscle pain. She spent most of her time lying down and has no quality of life.

By may of 2016 Lyme disease had finally really taken it’s toll. We had been consulting with a doctor in the US and he advised we add some other tests to Rose’s standing blood test order, so we did and they came back pretty bad. It looked like possible multiple organ failure.

Rose was admitted to hospital in Vancouver right away. Her malabsorption had caused her weight to plummet to 64 pounds and we were continuing to try to keep her alive with her tube feeding and the many supplements she was taking, but unfortunately things progressed.

Her legs and feet began to swell immensely and blood tests showed stress to her organs; mainly her liver and kidneys. She was started on total parenteral nutrition, (TPN) which is a method of feeding that bypasses the gastrointestinal tract.)Having the line implanted for the TPN was a nightmare! At first they placed a pic line in her arm, but because of her extremely small arms with no flesh or muscle to speak of, the line was pressing on her nerve endings and after 3 days of hell they removed it. They then placed a new line that went in through her jugular vein and then they made tunnel and the line came out her chest. This was still extremely painful for her, but not as bad as the pic line and she was taking narcotics to help control the pain. She talked about giving up and just going home to die because of all of her suffering, but so far we had convinced her to stay and keep trying.

Her legs and feet were so swollen by then that they were stretched to the limit and leaking water and blood plasma that should be in her cardio vascular system and her belly was becoming full of fluid as well, which was very painful and made it very uncomfortable for her to tube feed, which she was still doing in conjunction with her TPN. She also had big red open areas on her legs and deep painful cracks at her ankles and toes.

After 36 days in hospital Rose was still not doing well at all. It was coming up to the third birthday in a row spent in the hospital in the past several years. She was going through hell and it was so hard to watch.

By June 30th (4 days after Rose’s birthday) we thought everything was in the works for transferring Rose to a different hospital to start training for the Home TPN Program as soon as a bed came available. That way she could be at home and continue TPN.

Every 2 weeks the team of doctors changed at the hospital Rose was in and on on the morning of July 4th the new doctor in charge came into Rose’s room with his team of residents and students and told us that a GI doctor in charge of Rose’s care, whom we had only met briefly during Rose’s previous admission, said that she wanted to stop Rose’s TPN for 2 weeks and that Rose would have a sitter with her 24/7! She obviously wanted to make sure Rose was actually doing all of her tube feeding! We were devastated at this latest change of plans and after Rose had been tube feed diligently at home since 2009 and since the nurses at the hospital had been tracking it for the past 50 days we saw no reason to disconnect the TPN. Besides that, Rose was showing slight signs of improvement in her blood work since they implemented the TPN. They still didn’t believe that Rose had Lyme disease and because they could find no other reason for her low body weight they assumed she was somehow doing this to herself!! Even after everything she had been through for the past 15 years the medical community still thought it could be some sort of eating disorder!!

We managed to get hold of the doctor in charge of the Home TPN program the next day and he informed me that Rose would never be a candidate for home TPN because she didn’t have short bowel syndrome or a bowel obstruction and those were the only conditions that they accepted in to the program! I was shocked and said that I couldn’t understand why the doctors at the hospital Rose was in would say that she would be admitted to the home TPN program and that it was all in the works.

At that point Rose made the decision to come home and get Palliative Care involved since there seemed to be no hope for the future. So we brought her home thinking we were at the end of the road.

The next day we sent an email to Rose’s regular GI doctor to express our disappointment, frustration and anger and he replied in writing to tell us that he would stand by his word and help Rose no matter what it involved, if she decided to come to go back to hospital and keep fighting for her life.

There had been so much confusion and miscommunication among the doctors in both hospitals that we didn’t know what to believe any more, but after discussing it with Rose she was willing to put her trust in her GI doctor and continue her fight one last time.

Rose was admitted to a different hospital that her GI doctor worked out of and was once again hooked up to TPN, but she just couldn’t tolerate the pain and asked to have it disconnected and couldn’t imagine living anymore if this was how it would be. Her legs and abdomen were still terribly swollen and her blood tests were not improving. Our only hope now was to try to find a different tube feeding formula that she might absorb better. Rose made up her mind to go home and hope for the best.

We found a formula that was completely elemental that was the highest absorbency available, but Rose continued to lose weight and by October was only 61 pounds.

Just before Thanksgiving she banged her hip and because she had severe osteoporosis she fractured it. She was transferred by ambulance from our local hospital to a hospital in the city. She had surgery to have a titanium rod placed and it went as well as it could.

After several days Rose was discharged from hospital, but then a few weeks later she broke her wrist and fractured her pelvis on the other side of the broken hip. The wrist fracture happened when she was putting on some snug fuzzy socks and her foot slipped and she kicked her wrist. As for her pelvis, we aren’t sure how that happened. She had such severe osteoporosis that it could be a spontaneous fracture. Rose said she might have banged it, but couldn’t remember. For the pelvis fracture, she had to have as much bed rest as possible and use a walker when walking and of course pain management, all of which we could do at home, so there was no hospital stay, but if her pelvis didn’t heal there was the possibility of surgery later.

Shortly after that she broke her other wrist. It happened just because she was using it more to compensate for the wrist that was already broken.

Things were so bleak and Rose really had no quality of life left. She was in constant pain and her weight had dropped even more to 58 pounds.
Then on January 10th things took a very bad turn for the worse. By that evening Rose was in a coma and I wasn’t able to give her her pain medication (she took dilaudid liquid by mouth every 4 hours) so we had no choice but to take her to the hospital.

Early the next morning, January 11, 2017 Rose lost her 15 year battle with Lyme disease. She passed away peacefully and with grace with Gary and I by her side.

This world will not be the same without our Rose in it and we miss her terribly, but at least we know that her suffering is over.”

– Rose’s Mother

 

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