Treatment Updates

August 2017

Hi guys,
Well we are over halfway through!! It’s hard to believe how the time is flying. We are continuing with treatment and have progressed with our strength and conditioning rehab programme which feels great. Since our last update we have both experienced more intense Herxheimer reactions. In Week 5 Siobhán had severe migraines for a few days which hampered her participation with the treatment programme. However, she has thankfully recovered from that and is back engaging fully with the entire programme and making strides. Week 7 was Clodagh’s turn to suffer through an intense Herxheimer reaction with severe nausea and fatigue so she was also advised by the doctors to reduce her participation in the programme. Thankfully in both instances we can avail of additional supportive treatments from the clinic that help us to manage the symptoms of the Herxheimer reactions. Hopefully with these Clodagh will start to recover from this latest one!

We met with our doctor for a review in Week 6 and based on our symptom reports, so far, he is happy with our progress. We had bloods done last week so when those results come in we will meet him again and determine if any changes are needed.

So, we are headed into Week 8 now. There’s no question there have been ups and downs throughout the first 7 weeks. Moments of feeling we’ve made amazing progress and moments of feeling we were going backwards, which can happen when we’re having a particularly bad few days! Overall, we’re optimistic! We’ve seen a lot of progress in certain areas and that’s really encouraging but we know that there will still be a lot of work to do when we get home if we are to continue improving.

We have to say a huge thanks to everyone for their support while we’ve been over here. It means so much. We are well aware there has been massive work done at home to fundraise for us and cannot express how much we appreciate that. All the time that people are giving up and the effort they are going to just to help us. It’s incredible and we’ll never forget it.

Clodagh & Siobhán

May 2017

Hi everyone! We hope you’ve all been enjoying the nice weather! As you know from the last update the girls were struggling to reimplement their medication treatment plan due to complications from the vomiting bug they had at the start of the New Year. Unfortunately, they have not managed to progress much further since our last update despite trying several different things. Clodagh experienced a severe flare up in symptoms that targeted her spine and was at times bed bound with severe pain and was greatly restricted in what she could do. Thankfully she was able to restart some of her antibiotics in March 2017 which helped to ease the symptoms. Siobhán has been unable to start back on any antibiotics. She attempted several restarts in consultation with her doctor in Germany but her reaction to the antibiotics was too severe. She ended up in hospital to try and investigate the cause and had to undergo a number of procedures. Both girls have been inundated with acute infections in the last three months which has taken a toll on their overall health, immune system and energy levels. In addition, they have experienced a worsening of some of their symptoms and a return of others due to not being on any medication to fight the bacteria.

After the Skype call with their Consultant in January where they discussed IV antibiotic treatment the girls and their family began researching this option in Ireland to see if it was a possibility. As time went on and their condition didn’t improve their Consultant suggested that this might be the only avenue available as IV antibiotics bypass the gut, cause less side effects than taking oral antibiotics and the girls could be put on stronger treatments to target the Borrelia bacteria and all their co-infections. They contacted some private clinics in Ireland to try and organise IV treatment here. A clinic had provisionally agreed to provide the treatment privately but pulled out at the last-minute citing staff shortages which was of course, very disappointing to the girls. The prospect of undergoing IV for 2-3 months was daunting enough when they thought they would be undergoing this in the comfort of their own home with easy access to support systems of friends and family and visits from their loved ones to break up the mundanity. Now unfortunately, this means that the girls have no option but to go abroad for IV treatment.

They Skyped with their Consultant on Monday 8th May 2017 and he recommended that the girls should undergo IV treatment as soon as possible and given that they cannot receive this treatment in Ireland they will have to move over to Germany to receive it. Obviously, this is a massive upheaval for Clodagh, Siobhán and their family but they have exhausted all other options. Their Consultant has recommended a course of IV antibiotics for 2-3 months and the girls hope to start this in early June 2017. It is the clinic’s policy that the girls must be accompanied by someone as they undergo the intensive IV treatment, therefore their Mum, Eleanor, has to accompany them to Germany. In the meantime, they have started a new programme aimed at restoring their gut and building up their immune system to prepare for the upcoming IV treatment.

While it has been a very difficult time, the girls and their family are hopeful that the IV treatment will finally give them the breakthrough in their recovery that they have been aiming for and will kickstart things into improving so they can get back on track and get back doing all the things they love. As always, the family wish to express their thanks for all the support and prayers you have been sending their way and how much they appreciate everything that you all do for them.
💚

February 2017

Hello again everyone! Hope you all enjoyed Pancake Tuesday and are being good for Lent. The girls have been very busy since our last update around Christmas time. Hard to believe it is almost time for another trip to Germany!
As you know after their last consultation in Germany the girls returned home with some new things to try in an effort to aid their recovery. We mentioned that their consultant had recommended that they engage in a specialised rehabilitation programme in Ireland. Since then, the girls have started attending physiotherapy to help with strengthening and reconditioning their muscles. The girls have a number of different exercises that they do every day. These are pretty basic exercises but still take quite a lot out of them. Their muscles fatigue very quickly and the exercises cause considerable pain but they have to try and push through them as best they can. It is difficult to make progress as the exercises themselves can trigger flare ups, such as back spasms, which can leave them immobile or in too much pain to do anything. However, they know there is no quick fix here and it will take perseverance and determination in order to help them return to a state where they can at least carry out functional tasks without too much pain.

They have continued with their yoga sessions once a week. This is a great treatment that works in tandem with the physiotherapy programme. Yoga helps with building muscle strength using gentle stretches that go deep into the muscles. While challenging, it is less likely to cause flare ups or pain while doing it and has the added benefit of easing pressure on the spine. Clodagh and Siobhán also continue to attend Acupuncture. In December Siobhán had to increase her sessions to twice a week as she picked up a number of infections. Due to her suppressed immune system it is harder for her body to rid itself of these infections and something as simple as the common cold can cause big problems for her. The girls have found acupuncture to be an extremely important aspect of their treatment. It works to restore health (fight infection and build up the immune system), alleviate pain and stimulate energy. Siobhán is still attending twice a week as her infections continue to flare up in her system. Clodagh has also had to increase her sessions to twice weekly while she fights an infection.
Clodagh and Siobhán had an appointment with a pain management specialist in January who has put them on a number of new medications. The goal is to help control the pain from their nervous system that causes them to experience shooting pains down their arms and legs, and pin and needles when they try to exert themselves or sometimes for no reason at all. He also prescribed them medications to help with muscle spasms. Hopefully they will begin to see some effect from the medication but it might take some time to get it right. The girls continue to complete their other recommended therapies on a daily basis such as the infrared sauna, detox bath, light therapy, cefaly, rife machine, and light exercise. The family have also ordered an oxygen machine which will hopefully be delivered soon so the girls can start on this treatment. In addition, they still take their medication and supplements from Germany (about 60 tablets a day!).

Siobhán and Clodagh are both out working now for two and three days respectively. Siobhan’s contract with the HSE will be over at the end of March 2016 and Clodagh is hoping to have completed her Ulster University placement by April 2016. While it is demanding a lot of their bodies to be out working for a few days the girls are enjoying some sense of normalcy with getting to return to the workplace, albeit in a different way, at a different pace. It is just the first step on the road to recovery!
The girls are due to go back to Germany on the 7th of March 2016. They will have their bloods taken next week to courier over to Germany for testing so that the results will be in for their review with the consultant. Like always they want to express their sincerest thanks to everyone who has supported them thus far. The costs have been increasing over the last few months with new medications and increased treatments but they can really feel the benefit and they would not be able to avail of it without your continued support. Siobhán, Clodagh and their family appreciate all the efforts everyone has made to support them in this journey.

October 2016

Hello everyone! We wanted to let you know how Siobhán and Clodagh got on with their appointment in Germany this September 2016.

Prior to this, as always, the girls had sent over their bloods to the lab in Germany and received their results before attending the appointment. Everyone was feeling quite disappointed with the results. Clodagh & Siobhán were both testing positive for more infections, infections they thought had been eradicated were showing up as positive again and their immune systems had shown no sign of improvement. Instead the results indicated things had gotten worse. You can imagine that this would be a bit of a blow on the two-year mark of their diagnosis. Thankfully, even though the results are bad, the consultant in Germany could explain the value in getting these bad results which alleviated some of the disappointment. As you all know at this stage tick borne diseases including Lyme disease and the co-infections that often accompany it are very complex. Even though the testing in Germany offers more sensitivity and specificity resulting in more accurate results, they cannot test what is not there. Given that the girls immune systems are not working properly, they are not producing enough of what’s needed to accurately reflect the level of the infection. As such the doctors rely on clinical symptoms as much as blood work when deciding on treatment protocols. These treatment protocols then aim to draw the bacteria out of the tissues into the bloodstream where the medication can do its job and eradicate it. Thankfully the girls’ consultant in Germany has enough experience and knowledge to know that while the bloods were giving some insight into the situation they were not giving the whole picture so he continued to adjust their treatment plan based on their presentation and took a more aggressive approach to attack the bacteria he believed was there. Therefore, while the blood results showed that things were bad, this demonstrated that the aggressive approach was working because the bacteria was being drawn out into the blood to be killed off. The worsening results for the immune system also supports this because the low levels indicated that there had been a “big battle” (to quote their consultant) in the previous months.

So, what does this mean? This means the girls and their doctors and parents are getting a clearer picture of the extent of the infections and the intensity. Things are worse than the doctors previously thought with the infections being more deeply embedded and more extensive so they have upped the intensity and aggressiveness of the treatment programme once again. Judging by what the most recent results have shown it will likely take much longer than originally thought for the girls to return to full health. However, they remain positive knowing that at least they are going in the right direction with the treatment plan.
Outside of the trip to Germany, Siobhan has continued working three days a week and is due to increase her hours. This will bring its own challenges but she is enjoying what she is doing and is hopeful that it goes okay. Clodagh’s summer job where she was working three days a week has finished up now so she is searching for another part-time job and has also sought out some volunteering work. Of course, they both still suffer a lot with pain and are struggling with fatigue and neurological symptoms, but they continue to motor along. The consultant upped both their treatments so they’re currently on a multi-antibiotic regime with anti-malarial medication alongside additional immune support and their existing supplements. Clodagh is being monitored closely as she tends to struggle more tolerating the aggressive protocols but she’s confident she will manage going forward.

The girls continue their recommended complementary therapies. Following on from their visits to the physical therapists it was identified that they have experienced significant muscle waste due to the myriad of infections and they have now started strength and conditioning exercise sessions. So far they are managing a thirty minute session twice a week. This is a big step and their aim is to build up to longer sessions and hopefully experience no set-backs.
As always the girls and their family want to express their gratitude for all your generosity, support and fundraising efforts as this treatment would not be possible without it all. The girls are back to Germany in early December for their next review and we wish them well with their treatment and therapies in the meantime 💚

September 2016

Hey guys, hope everyone is settled back into the school routine! It’s been awhile since our last post on the girls progress. As you know they started a more aggressive treatment protocol a few months back and the doctors wanted to allow them a full 6 months to see how their bodies reacted before running the full array of bloodtests. During this time they had Skype consultations with their specialist and although it has not been easy and there have been difficulties, both Siobhan and Clodagh have noticed quite an improvement. Siobhan has been working part time 3 days a week and Clodagh also managed part time work 3 days a week during the summer. It’s tiring but they’re managing better than before. They’ve sent their bloods off to Germany this week and will be back in Augsburg in September to assess how the treatment is going and determine how it will continue.
The girls are excited to be heading over to Dubai to visit their sister Marie. She kindly and generously funded this trip for them in order to give them a break from the everyday realities of living with this disease. While over there the girls will hit the two year mark since their diagnosis so travelling on their own to Dubai demonstrates just how far they’ve come. Even though they still face many challenges it’s important to recognise the progress that has been made.Thanks again to everyone who sends their prayers and best wishes to Clodagh and Siobhán. Your support has been invaluable to them and their family.

March 2016

Hello everyone! As you know, Clodagh and Siobhán were back in Germany on the 9th March for a review with their consultant.

Their blood results show that both girls are still actively fighting the Borrelia bacteria along with their respective co-infections. They were both struggling with getting their pain under control so the consultant made some changes to the pain management regime and Clodagh is already feeling the benefits of this.

Unfortunately, both girls were diagnosed with two new co-infections. Given their clinical symptoms and the lack of improvement in their immune system this indicates that there are underlying infections that need to be treated before there will be a breakthrough in their treatment. Although they were disheartened to hear this news there was some solace in knowing there was a reason why their progress was being hindered and now this can be addressed. Their consultant has decided to take a more invasive approach which involves increasing the herbal treatment and starting a multi-antibiotic regime which will include an anti-malaria tablet to break down the shells of the bacteria and draw them into the blood where the antibiotic will (hopefully!) kill them. It will be a tough few months for the girls as they experience the ill effects and Herxheimer reactions of this new treatment programme.

On a personal note Clodagh is in her 9th week of placement with 2 weeks to go. Completing this will be a huge achievement for Clodagh and is the last step before her graduation. Needless to say everyone is so proud of her for making it this far and persevering to the end.
Siobhán’s contract has come to an end so she has just finished working. It was great for her to be back in the work force for 2 days a week and she managed it reasonably well. There might be some more part-time work on the horizon so she is keeping her fingers crossed!

Overall the consultant is happy with the holistic treatment programme the girls are maintaining at home. They continue with their weekly acupuncture, yoga and physio rehabilitation sessions. They also support their recovery with daily treatments including the infrared sauna, detox bath, light therapy, cefaly, rife machine, oxygen therapy and light exercise. The consultant reminded both girls to be patient with their recovery as everybody’s body reacts differently to treatment and it is all about the “baby steps of improvement”.

Overall, the girls were happy with their visit to the clinic. The consultant is confident that they are moving in the right direction and starting an aggressive multiple-antibiotic regime will hopefully lead to a breakthrough in their recovery. As always the girls want to express their sincere thanks and appreciation to everyone who is helping them to receive this essential treatment.

January 2016

Hey everyone, as you know, Clodagh and Siobhán were back in Germany last week for a review with their consultant. There were some delays with the flights due to fog but thankfully, they made it over and back in one piece!

The visit was encouraging. Siobhán was happy to find out her blood work showed no traces of activity for one of her co-infections which would indicate that it is no longer active in her system! She is still actively fighting the Borrelia bacteria alongside her other co-infections and will continue with the antibiotic treatment she started in August but this is a positive step forward. Her immune system is still slow to improve but little by little is moving in the right direction, which is encouraging. On a more personal note, this month marked a significant achievement and step forward for Siobhan as last week she took up a temporary post working two days a week as a social worker in primary care.
Clodagh’s blood results show that she is still actively fighting four co-infections and the Borrelia bacteria. On a positive note, the results show that there is an improvement in her immune system. The consultant and Clodagh both agreed to stay on the natural antibiotic treatment as the consultant had concerns about her ability to tolerate the synthetic antibiotics and the potential damage they could do to her weakened organs. Personally, Clodagh had a massive achievement in November when she submitted her University thesis. This took a huge effort on Clodagh’s part given the difficulties she has with concentration, comprehension and general cognitive function so to have successfully completed such a monumental task is huge. She is now focusing on building herself up to commence her final placement in January. Once this is successfully finished, it will mark the completion of her Occupational Therapy degree.
While in Germany, the head of the clinic also inquired whether the girls were agreeable to have additional blood tests undertaken, at the clinic’s expense, for research that is being conducted by the clinic in relation to Lyme disease. The girls were happy to oblige, as research in this area is essential.

Their consultant recommended that Clodagh and Siobhán engage in a specialised rehabilitation programme in Ireland. The aim is to build strength and focus on functional movement as their bodies have become deconditioned due to the severity of their condition. They have difficulty with simple movements such as walking upstairs, carrying a shopping bag and going from sitting position to standing and experience a lot of pain in this regard. The girls have met with physio therapists who specialise in strength and conditioning programmes for people suffering from long-term illnesses and will continue with this programme in 2016.

The girls’ consultant also strongly recommended that the girls attend a pain management specialist in Ireland to determine an effective pain management programme. This stems from the unrelenting spinal pain and other muscular/joint pain they experience due to the high levels of inflammation in the body that can prevent them from walking and result in them remaining bed-ridden. Prolonged and continuous pain causes undue stress to the body and undermines the effect of medications and other treatment plans so this is an important aspect of the treatment plan for Clodagh and Siobhán that they hope to begin in the new year.

The girls are continuing with their weekly acupuncture sessions. They have also started yoga, which has multiple benefits such as building muscle strength, helping to ease the pressure on their spine and increasing blood flow. Siobhan and Clodagh also continue to complete their other recommended therapies on a daily basis such as the infrared sauna, detox bath, light therapy, cefaly, rife machine, physio and light exercise. The family are looking into purchasing an oxygen machine from the clinic in Germany as this is a vital part of their treatment plan. Oxygen Therapy will help the girls to improve the efficiency and tolerability of antibiotics. It results in an increase of oxygen in the tissue and strengthens the immune system. As you can imagine, completing all these treatments in a day can leave the girls exhausted and they often joke that being a ‘Lymie’ is a full time job with the time they spend on machines!.

Overall, the girls are receiving the care that they need from the clinic in Germany and are moving in the right direction. With this disease, the consultant reminds them that patience is required as progress is slow, but what is important is that progress is being made no matter how small! As always, the girls and their family want to express their gratitude and appreciation and they feel so lucky for all the support they have received from their friends, community and family during their recovery. They wish everyone a Happy Christmas and peaceful New Year.

24/12/2015

Update following girls visit to Germany on 10th Dec 2015.

Hey everyone, as you know, Clodagh and Siobhán were back in Germany last week for a review with their consultant. There were some delays with the flights due to fog but thankfully, they made it over and back in one piece!
The visit was encouraging. Siobhán was happy to find out her blood work showed no traces of activity for one of her co-infections which would indicate that it is no longer active in her system! She is still actively fighting the Borrelia bacteria alongside her other co-infections and will continue with the antibiotic treatment she started in August but this is a positive step forward. Her immune system is still slow to improve but little by little is moving in the right direction, which is encouraging. On a more personal note, this month marked a significant achievement and step forward for Siobhan as last week she took up a temporary post working two days a week as a social worker in primary care.

Clodagh’s blood results show that she is still actively fighting four co-infections and the Borrelia bacteria. On a positive note, the results show that there is an improvement in her immune system. The consultant and Clodagh both agreed to stay on the natural antibiotic treatment as the consultant had concerns about her ability to tolerate the synthetic antibiotics and the potential damage they could do to her weakened organs. Personally, Clodagh had a massive achievement in November when she submitted her University thesis. This took a huge effort on Clodagh’s part given the difficulties she has with concentration, comprehension and general cognitive function so to have successfully completed such a monumental task is huge. She is now focusing on building herself up to commence her final placement in January. Once this is successfully finished, it will mark the completion of her Occupational Therapy degree.

While in Germany, the head of the clinic also inquired whether the girls were agreeable to have additional blood tests undertaken, at the clinic’s expense, for research that is being conducted by the clinic in relation to Lyme disease. The girls were happy to oblige, as research in this area is essential.

Their consultant recommended that Clodagh and Siobhán engage in a specialised rehabilitation programme in Ireland. The aim is to build strength and focus on functional movement as their bodies have become deconditioned due to the severity of their condition. They have difficulty with simple movements such as walking upstairs, carrying a shopping bag and going from sitting position to standing and experience a lot of pain in this regard. The girls have met with physio therapists who specialise in strength and conditioning programmes for people suffering from long-term illnesses and will continue with this programme in 2016.

The girls’ consultant also strongly recommended that the girls attend a pain management specialist in Ireland to determine an effective pain management programme. This stems from the unrelenting spinal pain and other muscular/joint pain they experience due to the high levels of inflammation in the body that can prevent them from walking and result in them remaining bed-ridden. Prolonged and continuous pain causes undue stress to the body and undermines the effect of medications and other treatment plans so this is an important aspect of the treatment plan for Clodagh and Siobhán that they hope to begin in the new year.

The girls are continuing with their weekly acupuncture sessions. They have also started yoga, which has multiple benefits such as building muscle strength, helping to ease the pressure on their spine and increasing blood flow. Siobhan and Clodagh also continue to complete their other recommended therapies on a daily basis such as the infrared sauna, detox bath, light therapy, Cefaly, rife machine, physio and light exercise. The family are looking into purchasing an oxygen machine from the clinic in Germany as this is a vital part of their treatment plan. Oxygen Therapy will help the girls to improve the efficiency and tolerability of antibiotics. It results in an increase of oxygen in the tissue and strengthens the immune system. As you can imagine, completing all these treatments in a day can leave the girls exhausted and they often joke that being a ‘Lymie’ is a full time job with the time they spend on machines!.

Overall, the girls are receiving the care that they need from the clinic in Germany and are moving in the right direction. With this disease, the consultant reminds them that patience is required as progress is slow, but what is important is that progress is being made no matter how small! As always, the girls and their family want to express their gratitude and appreciation and they feel so lucky for all the support they have received from their friends, community and family during their recovery. They wish everyone a Happy Christmas and peaceful New Year.

01/12/2015

Clodagh & Siobhan are due to travel to the clinic in Germany for a review on the 10th December. They girls have an early start on the 10th and will be at Dublin airport at circa 5am. They are due to arrive in Munich at 10:30am local time and from there they have to travel to Augsburg. By the time they each have their individual consultations with the specialist in the clinic, pick up their supplies of medications etc. from the local pharmacy they then turn around to head back to Munich to catch their flight home. They are scheduled to land back in Dublin airport at 10pm that night. A long and tiring day for them. Blood samples from both girls were sent over to the laboratory in Germany by courier last week and the results will be available to the clinic for their visit. A further update will follow on how the review in the clinic went for the girls in the days after they return.