March 2010 Pulse 26
The pulse went fine. Kim had coffee everyday and she was feeling pretty good. Post-pulse was a bit different. Kim got a little wobblier and had a couple episodes of “sudden urge to pee” and this was perplexing. This makes sense during the pulse, but not after. I wondered if this might be related to having switched to Tinidazole from Flagyl, but Kim’s been on Tinidazole since pulse 23. After a lot of bantering, it turned out that Kim had only taken one day’s worth of Ibuprofen to cap her pulse. This is generally not enough and certainly wasn’t this time following 10 days of Tinidazole. Kim started taking Ibuprofen and got relief within two days.
As Kim is closing in on the end of the month and getting ready to start her 27th pulse on April 1, she’s not feeling entirely herself. We’ve been bantering around the ideas of inflammation, humidity, stress and LDN. (???) We had also changed the curcumin part of her regimen. We called Vanderbilt and Kim’s doctor is out of town, but the nurse said that there’s been a number of related calls in the last week or so. In the meantime, Kim’s added some curcumin back.Why are you taking that?Cholecalciferol (Vitamin D3)
– Risk of MS has been shown to have an inverse relationship to vitamin D supplementation. Vitamin D has also been shown to have antibiotic qualities and a considerable body of physiological evidence links vitamin D with Multiple Sclerosis. Vitamin D has been associated with regeneration of axons. Supplementation with Cholecalciferol (D3) is generally thought to increase serum levels better than Ergocalciferol (D2). Finally, supplementation may have a more significant impact than UV light exposure.
Munger, Kassandra et al. 2006 Serum 25-hydroxyvitamin D levels and risk of multiple sclerosis
Wang, Tian-Tian et al. 2004 Cutting Edge: 1,25-Dihydroxyvitamin D3 Is a Direct Inducer of Antimicrobial Peptide Gene Expression
Pierrot-Deseilligny, Charles 2009 Clinical implications of a possible role of vitamin D in multiple sclerosis
Chabas, Jean-Francois et al. 2008 Vitamin D2 potentiates axon regeneration
Romagnoli, Elisabetta et al 2008 Short and long-term variations in serum calciotropic hormones after a single very large dose of ergocalciferol (vitamin D2) or cholecalciferol (vitamin D3) in the elderly
Kiely, Leventis et al. 2009 The tolerability and biochemical effects of high-dose bolus vitamin D2 and D3 supplementation in patients with vitamin D insufficiency
Houghton, Lisa and Vieth, Reinhold 2006 The case against ergocalciferol (vitamin D2) as a vitamin supplement
Armas, Laura et al. 2004 Vitamin D2 Is Much Less Effective than Vitamin D3 in Humans
Trang, Hoang et al. 1998 Evidence that vitamin D3 increases serum 25-hydroxyvitamin D more efficiently than does vitamin D2
Khazai, Natasha et al. 2009 Treatment and Prevention of Vitamin D Insufficiency in Cystic Fibrosis Patients: Comparative Efficacy of Ergocalciferol, Cholecalciferol, and UV LightPulse 27 and more – April 2010
Kim begins her pulse feeling like she never recovered from the last pulse. Sriram got back to Vanderbilt and called Kim. He said to stop taking the LDN and only do a 7-day pulse. Before the pulse Kim noticed that she was getting red bumps on her chest. We had thought that maybe this was related to a change in laundry detergent or the super-high pollen counts the DC area was experiencing. The pulse, didn’t help her walking and the red bumps got worse and itchy. I got Kim some over-the-counter Claritin and Benadryl and this seemed to help with the itching, but the bumps continued to get worse and Kim’s energy level was also diminishing. Kim’s hand got numb and she started to have balance issues. We thought this seemed like an exacerbation, but it didn’t have all the characteristics of the exacerbations Kim had in the past, especially absent was the hallmark creeping numbness up her legs. We were both very worried and shaken.
Kim went to her GP’s office for an urgent-care visit. Her regular GP was out, but the one that saw her told her she had a skin infection. The scripts Kim got were for Cetirizine and Cephalexin. One day and 3 Cephalexin's later, Kim turned the corner and was improving. She used her cane to get to morning Mass and went to the cleaners. She felt that she could stand up with more confidence in just one day and the numbness went away. A couple more days and Kim had lost those improvements and when she called the doctor for a refill the doctor was surprised that the infection hadn’t cleared and told her to come in the next day.
On 4/13/10 Kim got new scripts for the skin infection that seemed to be spread all over her back chest and arms. The increase in spreading of the skin concern seems to correlate with increased difficulty walking and numbness in the hands. The new scripts are SMZ/TMP (Sulfamethoxazole and Trimethoprim) DS 800-160 one tablet twice daily for 10 days and Prednisone 5mg one tablet three times a day for 5 days. Kim has also been referred to a dermatologist. With the new scripts Kim seemed to improve for a couple days and then stabilized. While the numbness dissipated, Kim felt only a little better.
On 4/19/10 the dermatologist gave Kim 3 new scripts: Benzoyl Peroxide 5% wash, Triamcinolone 0.1% and Tretinoin. Kim was to use the wash first then treat with Triamcinolone until the itching stopped and then she started using the Tretinoin. The red bumps are going away very slowly. Kim’s walking is getting back to normal slowly and none of these doctors have yet to pin down the cause of the problem. As April draws to a close, Kim is not feeling 100% yet as she is thinking about her May Tinidazole pulse that begins on the first. On 4/23/10 Kim saw her PCP again and was diagnosed with Scoliosis. She is also being referred to a Pulmonologist for shortness of breath.Pulse 28 – May 2010
We really were not so attentive to the side-effects of the pulse. It didn’t seem to have much impact on everything else that has been happening. It’s mostly been about waiting until May 13 to see the Pulmonologist, Dr. Soni. Dr. Soni diagnosed Kim with asthma and started her on Advair. Kim's walking continues to be more compromised, she still has the inflammatory skin condition and now she has an inflammatory lung condition. Kim has lost some of her bladder control and balance and she is now becoming sensitive to light again. These are all symptoms that were associated with Kim's MS before she started combined antibiotic protocol.
The Advair seems to be helping Kim’s breathing.No Pulse – June 2010
Kim’s inflammatory state has continued and Dr. Sriram said to skip the Tinidazole pulse this month. In the first weeks of the month, Kim has experienced increased pain and reduced mobility. Kim is still using the trio of scripts she got from the Dermatologist, the Advair from the Pulmonologist, Rifampin, Azithromycin and Provigil. We recently learned that NSAID’s (Ibuprofen and Naproxen) are not recommended if you have asthma, so Kim is no longer using those. Kim asked the Pulmonologist about Curcumin and Glucosamine, which are COX-2 inhibitors. We did not get a direct answer, but it sounds like Curcumin and Glucosamine are not considered to be NSAID’s. Interestingly, it turns out that COX-1 inhibition and not COX-2 inhibition might be the concern in asthma:
Harrington, Louise et al. 2008 COX-1, and not COX-2 activity, regulates airway function: relevance to aspirin-sensitive asthma
I also looked up Curcumin and Glucosamine. It turns out that Curcumin inhibits both COX-1 and 2, but Glucosamine is mainly shown to inhibit COX -2 and not COX-1.
Handler, Norbert et al. 2007 Synthesis of Novel Curcumin Analogues and Their Evaluation as Selective Cyclooxygenase-1 (COX-1) Inhibitors
Hong, Jungil et al. 2004 Modulation of arachidonic acid metabolism by curcumin and related b-diketone derivatives: effects on cytosolic phospholipase A2, cyclooxygenases and 5-lipoxygenase
Churl Jang, Byeong et al. 2007 Glucosamine Hydrochloride Specifically Inhibits COX-2 by Preventing COX-2 N-Glycosylation and by Increasing COX-2 Protein Turnover in a Proteasome-dependent Manner
Largo, Raquel et al. 2003 Glucosamine inhibits IL-1beta-induced NFkappaB activation in human osteoarthritic chondrocytes
Kim saw an Orthopedist to follow up on the scoliosis. The orthopedist took an x-ray and said that she had a 22 degree curve. He couldn’t comment on how it might relate to other conditions Kim has been diagnosed with, but didn’t exclude the possibility either. Instead, for now, Kim should initiate physical therapy for her spine.
A week later, Kim saw Dr. Sriram. We talked at length about the extended inflammatory event Kim has been experiencing. He wants to ensure that Kim isn’t having a reaction to any of the scripts she is receiving for MS. Since the inflammation has continued despite discontinuing LDN two months ago and Tinidazole a month ago, Kim can resume using those medications. Likewise, Kim will discontinue using Azithromycin (3x/week) July 1st. The plan is to see if the inflammation calms when individual antibiotics are halted. If the inflammation continues through the period of antibiotic suspension, Kim will add a low dose Prednisone regimen of 10mg on alternating days. Dr. Sriram is also discussed the possibility of suspending the ABX protocol for a 2-week period to reset Kim’s flora. He did not associate Kim’s Scoliosis with recent inflammatory events, however, he indicated that if Kim's Orthopedist ordered an MRI, he would request C and T spine inclusion. We asked him about apoptosis. I should be clear that this was specifically pertaining to Kim within the context of potentially favoring one supplementation approach over another. He thinks that it would be more useful to take an apoptotic approach. We talked about CCSVI and he noted that he is interested in anything that may be beneficial for MS patients, and while he is hopeful about CCSVI, recent data doesn’t seem to be as clear cut as initial reports.Pulse 31 – September 2010
Back up a bit. It’s been a tough year. Kim’s hopeful in a way that she hasn’t needed to be until now. She’s equally determined and fighting.
In July, Kim completed a 7-day pulse. Her dermatologist bumped her up to a 10% Benzoyl Peroxide wash. Advair seemed to be helping and Kim was down to one puff a day. Kim felt that her legs were getting weaker and more unstable so she restarted Azithromycin and discontinued using Rifampin.
In August, Kim completed another 7-day Tinidazole pulse and she resumed taking Rifampin. In the second half of the month, Kim became very concerned about the rate of change in her condition. Kim experienced issues with her walking, breathing, bladder, memory and balance. Dr. Sriram wrote her a script for Desmopressin and replaced Rifampin with Rifambutin, 150mg daily.
In September, Kim completed a 7-day Tinidazole pulse. She’s determined about making it to physical therapy and she’s going to try aqua pilates. The Rifambutin seems to be helping. Kim seems to have a little more energy during the day and I think I’m experiencing a little more of her Kimmish attitude.
It’s been 5 months since Kim’s walked 25-feet in less than 5 seconds. We hit a diner for sweets before doing Kim’s post-pulse walk. 4.94 seconds! We know that there is a sugar effect, but we mainly think that the Rifambutin is having a beneficial impact over Rifampin. We are cautiously optimistic and hopeful that Kim has turned the corner.Pulse 33 – November 2010
Last month Kim found it hard to deal with inflammation again. The asthma issue makes this all complicated because NSAID’s make the asthma worse. Several months ago we swapped Curcumin supplements to try and get a better anti-inflammatory impact. Kim was taking Vibrant Health Maximized Turmeric Curcuminoids 1000 and we switched to Tishcon Curcu-Gel Ultra 500. Part of the idea was that the Curcu-Gel was supposed to be better absorbed and require fewer pills; Kim is all in favor of fewer pills. We can’t say that we noticed any benefit over the last several months, so we are going back to the Curcuminoids 1000 for a while. In addition to the change in Curcumin supplements, Kim’s thinking about restarting LDN and trying out Ambrotose again.
Last month, Kim tried Bromelain for the first time. I had high hopes for it as a replacement NSAID in combination with the Curcumin. Kim didn’t feel that it did anything. She was taking 500mg of Vitamin Shoppe Bromelain as if one were a pair of ibuprofens. The one we got provides 2000 Gdu (Gelatin digesting units) per gram.
Kim’s been having a fair amount of hot and cold hands and feet this pulse, at the same time. Meaning, when she notices this, one hand is cold and the other is warm. The same is happening with her feet. We are not sure if this is related to having overall chills during the day and being overheated at night. Kim also noticed that she had off and on blurry vision or floaters during the pulse. There wasn’t a pattern to how or when this might happen. Kim found that she would need to blink a lot to make her vision clearer at times.
Kim pulsed with Tinidazole for 10 days this time. Although Kim get’s very tired the first few days of a pulse, it is noticeable that the best part of the month seems to be while Kim is pulsing and the days just after. Dr. Sriram thought it would be a good idea to return to the 10-day pulse. Kim also requested and received a script for an AFO brace. Kim’s physical therapist recommended it and Dr. Sriram wrote it. Coincidentally, we were cleaning out our closet last weekend and Kim found an old unfilled script for an AFO brace in a purse. The script was 10 years old.Three Year Anniversary – January 2011
Kim got her first Scripts from Dr. Sriram in January 2008. We drove to Nashville for her seventh appointment. Here are some general notes about how Kim has been feeling:
- Kim has reduced her physical therapy to once a week from twice a week. Her spine is improving and she is starting a land-based pilates class which is more challenging. Kim is continuing the aqua pilates class, which is twice a week. She is working with her physical therapist to learn to walk with the AFO brace. Kim isn’t really very excited about using the AFO brace.
- Desmopressin has helped Kim to have better bladder control at night and she is getting a more restful sleep.
- Kim feels cold all the time. Despite being in a warm indoor environment where others are comfortable, Kim feels cold. She felt this way before starting on the Combined Antibiotic Protocol. In her first year on the protocol Kim felt that her internal body temperature became more normally regulated. In this most recent year Kim feels that she has returned to feeling cold all the time.
- Walking has become more difficult and slower. Kim’s use of electric scooters has increased. In 2009, Kim had improved to the point that she was often walking in the community without a cane. Kim is now more unstable and she requires some sort of stabilizing aid when walking.
While there really haven’t been any new developments in the way the CAP is used for MS, we did find a good bit to discuss.
- Kim is going to add Prednisone to her regimen. She will only take 10mg during the 10 days of her Tinidazole pulse beginning in February.
- While Kim could try Fampridine, it is not so clear that she is a good candidate for it. Fampridine is not effective for everyone and there seems to be a great variance in the results from patient to patient.
- Patients seem to do better with Tinidazole over Flagyl. It is not recommended to switch between these. It seems to be better to stick with Tinidazole. He is open to the idea of using Doxycycline instead of Azithromycin, but it isn’t clear that there is a benefit to be gained from this.
- Kim should not be using Pyruvate, but using caffeine during her pulse is still recommended.
- Kim should stick with Rifambutin, which is good because she finds it much easier to schedule in her day. There is no “4th” antibiotic that might help improve the protocol.
- Most all the new drugs are immunosuppressive. Kim was not deriving benefit from these drugs before starting CAP and there is no reason to think that they would be effective for Kim now.
- CCSVI is interesting. If we are interested in pursuing it, he will give a referral. Anecdotally, some patients seem to gain good benefit following a balloon procedure.
- At 3 years, Kim is nearing the endpoint for the duration of the protocol. She will continue for 6 more months and then Dr. Sriram will assess the possibility of going to intermittent therapy.
Kim completed her 35th pulse in January, just before our trip to Vanderbilt. This was a 10-day Tinidazole pulse. She was pretty tired and unfocused the first 2-3 days of the pulse and it wasn’t until about the 4th day that I felt like I could have ask her opinions on various topics. Around mid-pulse Kim had improved energy, but was still very tired near the end of the day. Then she caught a cold that the boys had brought home from school and the last two days of her pulse were much harder than the first. I even took a day off from work to stay home and do the boys carpool for Kim. She slept nearly that entire day.Pulse 38 – April 2011
I’ve not made a good effort at keeping notes the last few months. As we are approaching Kim’s next appointment with Dr. Sriram we feel some concern as we look toward the future. While we know that Kim can’t be on antibiotics indefinitely, it is clear that they are helping her and that the monthly pulse is still killing bacteria. We’ve talked a tiny bit about CCSVI. Kim didn’t like my bringing up Copaxone as an idea. She knows that she needs to keep her determination up, it’s mostly a question of how best to channel Kim’s MS fighting energy. Since I’ve noticed that Kim responds to the pulse in what has become a monthly cycle, I’m going to try and keep a more detailed log of how Kim is feeling the next two months.Pre-pulse 2-3 days
Kim started having difficulty with her balance and walking. She fell a few times and seemed to have low energy. Kim had a similar experience at the end of last month too. I only noticed this as a pattern this time. Kim also noticed that her hands were not working as well as they normally do and her walking was a bit “tipsy”. This seemed to give me a sense that the pulse was “wearing off”.Pulse day 1
There seems to be a monthly cycle to the pulse that extends beyond the 10 days of the pulse itself. The first day really hit Kim hard. It was a Friday and when I got home around dinner time, Kim was asleep in bed. The first pulse day has been like this for her for a while. I’d contrast that against a “normal” day when I come home in the evening when Kim’s alert and getting dinner ready. The first day of the pulse is one that is hard for Kim to want to think about things, like making decisions signing-off our son's homework or deciding what to do on the weekend. You can tell that the Tinidazole found a lot of targets and that Kim’s body is doing as much as she can will it to do.Pulse day 2
Kim’s feeling a little better, but still needs rest. We visited a friend Saturday morning and Kim decided to wait until we got home to take her first Tinidazole of the day so she could be more mentally and emotionally present for the visit. Kim had bladder control issues later in the day after she took her Tinidazole and later she had a nap. She’s feeling emotionally heightened and she also said that she has been feeling more sensitive to light and loud noises. Kim’s voice has also been “raspy” since yesterday. Pulse Day 3
Kim seemed to have a little more energy today and we went shopping for a lamp. Kim had difficulty walking, but she did just fine with a shopping cart. She took her first Tinidazole of the day after we got back and then she “willed” herself to stay awake for about an hour so we could set the new lamp up and finish fixing up our guest bedroom. By the time we were done Kim had more difficulty walking and she was ready for a nap. Kim also had a stomach ache during the day.Pulse Day 4
Kim did not nap during the day. When I got home around dinner Kim was up and moving around the kitchen. She made up for her unsteadiness by wall walking. She did not have any tolerance for the boys childish arguing, she was feeling pretty crisp. Kim took her second Tinidazole before taking a shower, which was not a good idea. Kim was very unsteady after the hot shower and she need to take a nap afterward. The pulse naps are shorter than they are on the first day of the pulse. Kim also noted that her hands were working fine today. Pulse Day 5
Kim was feeling more energy today and she went to her morning aqua aerobics class. The class takes a lot of energy and she seems to have less energy later on class days. Kim’s walking was unsteady in the evening and she was more tired than usual.Pulse Day 6
Kim had her Pilates class today. Kim didn’t take any naps today and clearly had strength in her voice that suggested that she was feeling ready for the day. Kim’s not feeling any of the effects from the last 5 days.Pulse Days 7-10
Kim’s pretty much back to a normal routine and feeling mostly good. She had energy this weekend on days 9 and 10. Enough that we took on painting and redecorating a room. On the last day (10) of Kim’s pulse she felt better than she did just before starting the pulse. Her hands were working much better and she was walking better. Kim dug out a lot of Easter decorations and transplanted flowers. Kim was also able to take a hot shower after her second Tinidazole of the day without any negative consequences. Kim also did a timed walk in the kitchen on the 10th. She walked the 25-feet in 7.28 seconds. This was an ok time. Then again, if you consider that it was during her pulse, it was pretty good.Post Pulse Days 11 and 12
It was a hot and humid day today, it got up to the mid-80’s when it ought to be in the mid-50’s. Kim worked outside, transplanting some flowers on the porch and it left her balance and energy somewhat compromised. The next day was similar, however Kim did go to aqua aerobics in the morning. I also realized that Kim has been out of iron for about a week. I have to wonder if that’s somehow related to how she has been feeling. We just got our iron order today.Post Pulse Day 13 and 14
Kim feeling a little bit better than the day before. She was walking a little better and she went to her pilates class. Kim’s walking seems to be a little steadier when compared to the last 2 days. She’s getting closer to feeling 100% with improved mobility. Kim is still wall walking, but she is doing it more confidently. Post Pulse Day 15-17
Kim did an evening walk on Friday in 5.62 seconds. This seems to follow the monthly pattern of post-pulse improvement. Kim also had the benefit of being all sugared up on dessert. We stayed up until 3:00 am on Saturday/Sunday, taking Kim’s scooter with us to a casino. The interesting part was that Kim was walking the best she had all weekend after we left the casino and her scooter was put away. She was walking with her cane, but she was walking very well. Kim forgot to take her Provigil on Sunday morning and she was unusually tired midday, taking a long nap.Post Pulse Day 18
Kim felt that her walking was slow today. She’s working on trying to do her “Debbie” walk. Kim’s pilates instructor is Debbie and she’s been trying to help Kim focus on balance and control over speed. When Kim is impatient she tends to lunge at things when she gets close to them. The “Debbie” walk focuses on balance, as best as I can describe it, it’s like trying to walk while balancing a book on your head. Kim remembered to take her Provigil today and she could really feel just how important it is, she felt worlds better than she did yesterday.Post Pulse Day 19 and 20
We had a short period of “passive aggressive teenager”. Family disconnectedness is stressful for everyone and this affected Kim too. Kim had bladder control issues and her walking was significantly impacted. It is unclear how stress brings the responses in MS, but the cause and effect relationship is clear.Post Pulse Day 21-28
Kim’s walking and balance was improved over Easter. The weather improved and it was less humid. Kim’s family was in town and they all went shopping together. Kim didn’t use a scooter when she went shopping. It’s been since Christmas that Kim has seen her family and no one noticed any change in Kim’s symptoms and Kim felt like she was doing pretty well too.Pre Pulse Day April 29 – May 1
Kim started to slow down a little towards the end of the month. Kim told me that she had added an extra class at the RecCenter, which she cited as the cause. The first also fell on a Sunday and Kim decided to start her pulse on Monday the second instead. While Kim seems to be slightly more stable than she was at the very end of March, the pulse seems to be “wearing off” like it did at the end of last month. Kim feels apprehensive about starting her pulse up again.Pulse 39 – May 2011Pulse Day 1 - May 2
Kim’s wanted to start her pulse on a Monday. She had a little more energy than last month, she wasn’t napping. She did say that her hand was slightly numb. Kim was working much harder to walk. She was less balanced doing a lot more wall walking in the evening. It was also clear that Kim was starting to lunge at things when she got close to them.Pulse Day 2 and 3 - May 3 and 4
Kim’s hand is working just fine today. She was feeling pretty good most of the day and she went to her hydro-pilates class today. Kim was feeling much more tired in the evening and she took a nap a few hours after having her second Tinidazole. Kim felt a little bit better the following day.Pulse Day 4 - May 5
Kim had aqua pilates today. Kim was very wobbly tonight, having “bouncy” steps. She lost her balance several times. It’s as if the Tinidazole found a big pocket of bacteria and Kim’s feeling the resulting side-effects. Kim didn’t sleep well at night and had a bladder control issue in the middle of the night.Pulse Day 5 - May 6
Kim feels that something is different this pulse. Today she is not feeling hungry and she’s feeling and overall sense of weakness. She also has a peculiar chest sensation that is like how she felt when she was diagnosed with asthma. Despite feeling very drowsy throughout the entire day, Kim was able to stand through half her morning Tia Chi class.Pulse Day 6 and 7 - May 7 and 8
Kim was walking gingerly over the weekend. She was tired much of the time and she had on-again-off again stomach sensations. These were not reach for the “Tums” sensations, rather Kim wanted Alka-Seltzer.Pulse Day 8 - May 9
Kim was in good spirits tonight, but she was tired at the end of the day. Since she is near the end of her pulse, she would normally be more energetic at this point, however, this month she is not feeling the recovery as the pulse comes to a close. Kim’s been wall walking a good bit today and she also had a bladder control incident this afternoon. While Kim’s walking seems to be compromised, when she focuses on walking with more intent, she walks slower but with more control.Pulse Day 9 and 10 - May 10 and 11
Kim has been fluxing between feeling hot and cold. It has been a difficult pulse and she seems to be wall walking more than before. Kim’s also more tired in the evening. All this to say, the pulse was much harder than prior pulses. Post Pulse Day 11 and 12 - May 12 and 13
Most folks don’t complain about losing weight, but it is notable that Kim has been losing weight for no clear reason. This has been going for a while now. Kim is not on a diet and she eats whatever she wants. We are snackers, I’m not losing weight so it’s clear that Kim’s body is doing something different. Kim also wants to find out about swapping her Advair for something else, she doesn’t feel that Advair is an ideal medication for her asthma. Kim seems to be sleeping better since we moved her B-Complex to her evening supplement regimen.
Kim had a follow up appointment for a sonogram because of some spots that showed up on her mammogram. Although, the spots appeared to be benign, this was very stressful for Kim which resulted in a great impact on her walking the rest of the day. She will go back for a follow up in six months. It is also notable that Kim has been working on her mobility. She is now up to 4 classes each week, 2 hydro-pilates, 1 physical therapy and 1 land-based Tia Chi. Kim is also volunteering at a local food bank that serves the unemployed.Post Pulse Day 13 and 14 - May 14 and 15
Kim walked/shopped in a Kohl’s department store for 2-hours. We initially thought about bringing her scooter, but we forgot it, so Kim pushed a cart for the entire trip. Kim’s still doing a lot of wall walking in the house with an occasional lunge. Kim is walking more with the aid of a shoulder when available, or a cane when borrowing a shoulder isn’t an option. Kim is very unsteady walking unaided.Post Pulse Day 15 to 28 - May 16 and 29
Kim’s walking has been consistently difficult for this stretch of 2-weeks. I think Kim got tired of me asking her how she felt each day. Kim’s walking still seems to be better for the two weeks after her pulse, but then it gets more difficult the last week before her new pulse starts. We’re still doing the timed 25-foot walk about twice a month and those times seem to correlate to this pattern.Post Pulse Day 29 and 30 - May 30 and 31
One of the cool things about working in a law enforcement environment is that you get to see some of the cools stuff police work with. This week a co-worker brought a Segway into the office. A lot of folks got to try it out, I was fascinated as soon as I saw it. It was in the office for 5-days and I got the idea that this could be a mobility game changer for Kim. In summary, we found a first generation used Segway (i180) that Kim can manage, she loves it! There is a lot more to say about this amazing machine. As we close the month, we are optimistic about the places we can go with Kim’s Segway. A Big Catch Up – January 2012
It’s difficult to sit down and type when you don’t have a lot of exciting and wonderful news to share. Kim and I realize that our MS is progressing and that doesn’t make us happy. Despite that, we continue to fight this illness and we remain positive and hopeful. We are confident about being a part of Dr. Sriram’s practice and we won’t allow ourselves to start feeling pitiful, negative or miserable. Walking
We have been tapering off the 25-foot walk videos. We are doing them less frequently and the walk times are increasing. Kim is more apt to accept assistance with walking more than before. This could be holding someone’s arm while walking into church, using the scooter at the grocery store or leaning against the walls in our home.Scripts
Kim is no longer taking Azithromycin. Kim and Dr. Sriram felt that it wasn’t benefiting her any longer. Kim is still taking Mucobutin and doing 10-day Tinidazole pulses. When we saw Dr. Sriram during the summer, he offered Kim some new ideas to think about. The first was having CCSVI checked and done. Kim wasn’t very keen on this idea, but it was an option. The second was Methotrexate via lumbar puncture. I can’t find my notes on this so I might have the medication incorrect – which is important. But, Dr. Sriram has been following a study on this which has had some promising results. The third was to add Cellcept to Kim’s scripts. Dr. Sriram has been using Cellcept and has been getting some good results. Kim and I checked into these options and ultimately settled on adding Cellcept to Kim’s regimen.Segway
Kim’s gotten very good at racing around on the Segway. In the first few weeks we had it, Kim toured a shopping mall. Kim hasn’t toured a shopping mall in years. She can go visit neighbors and we have taken the Segway on the subway and toured around Washington, DC. The Segway is a mobility game changer for Kim. What’s really wonderful is that it doesn’t make you feel handicapped like a scooter does. You’re actually taller than folks around you and you can move faster than the folks around you. The Segway can easily go 15 mph, but Kim generally keeps it to about 5. It is extremely easy to use and requires (contrary to intuitive thought) absolutely no sense of balance whatsoever. We took it on vacation to San Francisco this summer. We visited my sister and Kim was able to Segway through the airports all the way to the gate. If you want to fly with a Segway there is a lot you need to do ahead of time. But the most important part is having nickel batteries and not taking the newer lithium ones. You can’t fly with large lithium batteries. Once in California, Kim was able to Segway the entire tour of Alcatraz, the Redwood forest, the Golden Gate bridge and the Petrified Forest. These are all places Kim would not have been able to see if she had to walk. In the next few weeks we’re going to get some ramps so Kim can load it into the minivan by herself so she can go places during the day while I’m at work.Upcoming February Vanderbilt Trip
The Cellcept was not a very good option for Kim. She had some reluctance in starting it and when she did she stayed on if for two-weeks and caught a cold that she could not shake. So she stopped taking it until she got better. Kim started again in December and within a week she caught another cold so she stopped taking it. Dr. Sriram doesn’t think that this is going to be a good therapy for Kim so we are now looking at Fingolimod (Gilenya) We have a few weeks until our trip and this is what we are considering and potentially starting before we drive to Vanderbilt.Vanderbilt Trip – February 2012
I think this was the first time Kim did the 25-foot walk at Vanderbilt with a cane. Kim used the word “Transitioning” to describe how she feels and how she views the ways she has to adjust to things being harder to do. Kim explained to Dr. Sriram that the pulses don’t seem to have any effect anymore. We talked about the problems with Cellcept and we talked about Gilenya. Kim decided to go with Gilenya. We spent extra time at the office learning about Gilenya and getting the rundown of all the testing that Kim would need to do before starting Gilenya. It was also explained to us that Kim would need to get prior approval from her health insurance before starting Gilenya. I didn’t realize just how big the paperwork process was going to be, but I’m glad we got started when we did. Kim discontinued the pulsing with Tinidazole but is continuing with Mycobutin as her only antibiotic. Going Places – March 2012
Our new focus has been on how to get the Segway around. It’s about 100 pounds and I’ve been lifting it up to put it in the minivan each time we take it anywhere. I ordered a set of ramps for it, but ultimately, the ramps don’t have a way to prevent “rollback” so it wouldn’t be safe for Kim to use them for getting the Segway in and out of the minivan. The ramps were also heavy for Kim. We decided to get a power lift.
It’s easy to find a powerlift that will work with a Segway, but we also needed it to work with Kim’s scooter. Scooter lifts don’t work with Segways. After a lot of searching we found Trilift
. The Trilift will work with a scooter
and a Segway
. I won’t say that it’s been simple getting the lift on the minivan, but I will say that it’s a hundred-times worth it. Kim can now load and unload her Segway when I’m not home. She is using it to get to her exercise class during the week.Gilenya - May 2012
Kim started Gilenya in early May. We were pretty worked up over the special appointment Kim had to make for the first dose. It was nothing like starting Flagyl. When Kim did her first Flagyl pulse, it was very clear something was happening. The Gilenya was uneventful, which made Kim feel a little disappointed. It’s supposed to take time and the change is supposed to be slow. Kim does feel like it’s helping her with bladder control. I also think it has stabilized Kim’s walking. Summer 2012
Despite the Gilenya, it has been getting progressively harder for Kim to walk. I’m not saying the Gilenya doesn’t work, rather it seems to be another one of the MS drugs that you use on faith because you’re not really sensing any difference. Kim started using her scooter a lot more over the summer. Folks at church complemented Kim on her new red scooter; not knowing that she’s had it for 10 years. Kim’s willingness to ride the scooter to church is meaningful and signals her understanding of where she is with her walking right now. Kim’s not even close to giving up, but she also knows that she needs more help than she used to. I also ordered Kim a new supplement, Anatabloc, that is supposed to be an NF-kB inhibitor. We haven’t noticed that it is doing anything, but we are still trying it.Vanderbilt – October 2012
Kim called Vanderbilt a couple weeks before her appointment. She told Sriram she was progressing much faster than she can remember and she wants to try going back on antibiotics. Kim’s continued on Mycobutin all along so Dr. Sriram was alright with restarting Azithromycin and Tinidazole.
Kim used a walker for the 25-foot walk for the first time. Kim’s never used a walker before and she said she can’t be worried about pride, I’m going to wait to see if Kim asks for one later. Sriram talked about Sara and David and how Sara has access to Roxithromycin. We got the impression that it might be useful to try and find a way to get out-of-the-country access to Roxithromycin. I also asked if Kim might benefit from newer antibiotics that are used to treat drug-resistant infections. Dr. Sriram thought about this for a while and said that he will look at Clindamycin and let us know if that would be appropriate for Kim. He also thought it might be worth looking into BG12. Finally, he recommended a lighter weight Allard AFO brace for Kim.Getting Ready to Roxi - November 2012
We finally got the Roxithromycin ordered. Should be here before the end of the month. We ordered it from Atlantic-Drugs.net. I’ve never ordered a script online before, calling them on the phone was not comforting, but we did have a good referral. I should type up Kim’s current regimen sometime, but for now I’m going to list her scripts:
Tinidazole 500 mg 2x/day 10 day pulse (to be switched to Flagyl soon)
Azithromycin 500 mg 3/week (to be switched to Roxithromycin 150 1/day soon)
Mycobutin – 150 mg 1/day
LDN – 4.5 mg 1/day at night with B-complex
Modafinil 200 mg 1/day in morning (Generic of Provigil)
Montelukast 10 mg
Desmopressin 0.1 mg 1/day at night before bed
Atlanticdurgsonline lost the script twice and lost the order twice after finding the script. So it has been 2-weeks and they still have no idea where the order is in their system. I’ve researched Canadian pharmacies today, I’m pretty confident the one I chose is a professionally run pharmacy, Pharmapassport. The only difficulty is that it’s going to take several weeks to receive the Roxithromycin.It’s Vanderbilt time already? – April 2013
Kim’s been having more trouble walking the last few months. She’s using her Segway and Scooter more often. Kim always rides the scooter in the grocery store now. We walk together more often and I’m getting pretty good at walking backwards when we do. Kim is wall walking a lot more at home and she’s had several instances wherein maneuvering around such as sitting down or getting in the car has become more difficult. I’ve been working on trying to move things around so they are more convenient for Kim, such as putting a sideboard outside the downstairs bathroom so toilet paper and candles can be stored closer to where Kim uses them. We pretty much take the scooter everywhere we go together just in case we need it.
Kim had an MRI last month and we took the disk to Sriram. He did not think there were any significant changes since Kim’s last MRI in 2009. While this sounded good, he also suggested that the progression that Kim is experiencing is likely related to her spine. Kim talked about having difficulty doing things and noted that she’s had instances of bending over to pick things up then losing her balance and falling. Her 25-foot walk time was about 30 seconds with a walker at this appointment. It is clear that Kim is working extra hard to walk and that getting her left foot to step forward is hard because she’s dragging her toes.
Kim did not feel that the Gilenya was doing anything significant for her. She also talked about having difficulty with bladder control at night. The night before our appointment, Kim was up about 4 times going to the bathroom. We did note that the Roxithromycin seemed to improve Kim’s symptoms for the first month. Kim said that one of the lasting benefits of the switch to Roxy seems to be that she doesn’t have tremors in her hands anymore. Kim’s regimen was adjusted to be as follows:
Tinidazole 500 mg 2x/day 10 day pulse (was not switched to Flagyl)
Roxithromycin 150 1/day will be increased to 300mg/day
Mycobutin – 150 mg 1/day
LDN – 4.5 mg 1/day at night (Kim takes with B-complex supplement)
Tecfidera will replace Gilenya
Modafinil 200 mg 1/day in morning (Generic of Provigil)
Montelukast 10 mg
Desmopressin 0.1 mg 1/day at night before bed will be increased to 0.2mg
Vesicare 5mg to use as needed.
By the way, Pharmapassport is working out pretty well. We have to wait about 3 weeks to get the scripts. They are generic Rulid made by Arrow in New Zealand. Have some Benadryl with your Tecfidera – May 2013
Last weekend Kim received her welcome package of Tecfidera. For some 6th sense reason, Kim waited until Saturday to take the first one, thank God. Starting Gilenya was different; Kim had to do a bunch of tests and the very first pill had to be taken in a controlled setting at a doctor’s office. Tecfidera didn’t have any of that, but maybe it should. Kim had a severe reaction. She started to itch and then she got hives and then she got beet red and then she started swell and shake. The paramedics came and they gave her a 50 mg shot of Benadryl which ultimately brought her back after we got to the emergency room. The hospital also gave her solumedrol. We left a few hours later. This was scary.
So this event really got me thinking. Thinking about how it’s been the last few years, and how I ought to post. The writing is all contemporaneous, I’ve been writing all along. I have some explaining to do. I’ve thought about this and I have 2 explanations for the hiatus. First, it’s way harder to write and share when things are not going well. This ought to be pretty clear from the timeline of the post. I got so accustomed to things getting better that I kept feeling like, any day, any week, any month now; it’s going to turn around. Second, my work has become increasingly time consuming and it’s just not possible to spend a lot of time on the MS websites. In part I did this to myself. I was posting on something like 5 or 6 MS message boards. I got overwhelmed and had to back away. My work is still very time consuming and I don’t know how much time I’m going to be able to devote to being here regularly. But, I know I needed to post a big catch up. I know that I needed to share all this and I know that I needed to do this now. Blessings, Ken