Entry 15: Feeling Angry

February 18th 2020

For those of you still following me I apologize for the lack of follow through with my posts in my progress. Today I am prompted to write because of many reasons. Some pictures in this post are graphic.

I am still undergoing weekly treatments to combat the effects of Lyme disease and it’s co-infections. There is no cure, only the hopes of remission and treatment of the continuing ravages of Lyme. I have 100 million more stem cells to go and my current treatment ends.

Reason #1: I try to get out of the house to help my mind. Some days you see me looking just fine, yet the next I can barely walk and use the aid of a cane. Among other places, Lyme also lives in my joints and sporadic inflammation caused by it cause much joint pain all over. I am fortunate to have a stem cell Dr. who recognizes the effects of Lyme and reacts immediately with IV treatments to combat what is happening.

My immune system is ravaged by this disease, making me susceptible to infection that normally a healthy person wouldn’t be affected by. My recent blood work showed my immune system is at a rating of 2.99, and should be between 9-10.

Streptococcus Type A

Approximately 3 weeks ago I started developing a large pimple above my right eye which quickly spread and burst open. My finger quickly swelled with a similar pimple. My ring was cut off. Amd a large spot appeared on my buttocks. Test showed strep, which other than strep throat, is flesh eating disease.

I am fortunate enough that my Dr reacted quickly and started cutting away tissue above and below the skin surface. Heavy dose IV treatment, daily cleansing and removal of yet more tissue continues for almost 3 weeks now.

I am rid of flesh eating disease as of today however the scars and emotional pain remain knowing that this is a continuous battle the rest of my life with other co-infections. Please look into the eyes of Someone you know who is suffering from any chronic condition. Look into their eyes right into their soul. Until you are able to look past the outward facade, you truly won’t know what they are going through.

Reason #2: The following article is from “The Lyme Association of Australia.” Do you think possibly the same thing is happening in Canada with the denials that Lyme Disease exists ? I am so fortunate to live in Mexico.

The IDSA in trouble. A couple of weeks ago we published a post about the Torrey vs the Infectious Diseases Society of America. Well, we have just heard that the judge has upheld the conspiracy claim against IDSA. This latest development means that the defendants (the IDSA, 6 individual physician IDSA panellists and the five insurance companies who have not settled out of court) have lost their bid to have the case against them dismissed. Briefly, the judge found plausible the patients’ assertions that the insurance companies bribed IDSA doctors to deny the existence of chronic Lyme disease and set up testing that made diagnosis less likely.But it doesn’t stop there. You can read the court documents on internationally acclaimed investigative journalist, Mary Beth Pfeiffer’s, website: https://www.thefirstepidemic.com/read-the-court-filings

Warren Bennett- Advanced Chronic Lyme

Entry 14: Back on Track

May 29, 2019

It seems fitting that I restart my blog about this journey with Advanced Chronic Lyme disease on this particular date.

It was exactly 2 years ago today that my life changed forever. It was when I was bitten by the tick.

So as I start to recall the last few months I will apologize to all you who are following my blog. The months from November to March were difficult and I tried to write but couldn’t. I wanted everyone to see improvements and to know that it is working.

This is my savior. Dr Ernesto Romero Lopez. I’m including his card because they have been amazing. They treat several different immunodeficiency syndromes, cancer, the possibilities are endless with stem cells.

With this disease I am up and down. People see me if I am out and about and think I’m healthy. I’m certainly healthier”

What you don’t see is the emotional struggle inside. Still some days when I am in so much pain I need help to stand up, or go through 3 weeks of constant diarrhea I lay in bed and cry. I recently told Gary I can’t do this life anymore.

Short term memory is still a problem. I can’t remember what plans we made five minutes ago for the afternoon.

I get lost if I am alone. The anxiety when Gary is out of my sight is tremendous. I am on antidepressants and anti anxiety medication but…

A few months ago I told Gary I wasn’t feeling well so I stayed in bed. We had company from Canada so the three of them went out to a beach bar in the early afternoon. Gary told me where they were going. I woke up feeling better and went to meet them. I went to three places and couldn’t find them. I forgot where they said. I panicked. I couldn’t find my way back home. I’d see a landmark I recognized over and over again but for 36 hrs I walked around lost. I didn’t recognize the names and numbers on my phone.

The police were involved with a missing persons report. Gary and our friends found me sitting in front of Mega Supermercado crying. I didn’t recognize them at first but I knew Gary. It was 4 am and I was lost 4 blocks from home.

I have to thank my friends who searched for me for those days. The internal struggle and pain knowing that Lyme is doing this to me is unbearable some days. Depression and suicidal thoughts still creep up.

It’s not the first time I’ve been lost for a few days. We made some lifestyle changes to deal with this.

There are many many positive things too. I am no longer on Doxycyclina an antibiotic to fight Lyme. I am no longer on hormone treatments as my adrenal glands kicked back in. My kidneys are working again. No more threat of advancing to stage 3 kidney failure. I, by my own words have become gordo….. fat.

I was 167 lbs before I got sick and in great shape. I at Christmas last year was 106 lbs and barely able to walk. No more steroids for weight gain. I’m now 177 lbs.

I go every Tuesday morning for IV treatments, ozone therapy and stem cells. Some weeks if I have an opportunístic infection I forgo stem cells as the IV meds would kill of those little angels.

Dr Lopez reacts quickly to any ailments that arise The joint pain I experience is some days crippling. He now every two weeks injects a cocktail of anti inflammatories, a freezing and a medication to help with my seizures. Every second week I receive 140 of these injections into my spine. It is extremely painful process however a day after I am mostly free of pain and my seizures have decreased in frequency.

I have so much to share since I’ve been offline for so long. But that will be in post 15.

I promise to make an entry once a week either Tuesday after my treatment or Wednesday.

Warren Bennett

Advanced Chronic Lyme Disease

#13: Difficult 3 Weeks

I finally decided to pick up the phone and write an entry. I owe it to all of you who helped me with this treatment. I owe it to all those considering options for treatment of Lyme.

I wanted my future posts to be upbeat and positive. That’s why I haven’t written. I received a second round of stem cells on October 23rd. There was a two week hiatus. I am supposed to receive them every Wednesday. Every Monday I am supposed to receive IV therapy with nutrients and energy boosters to prepare my body. This is not happening in my specific situation. There has been too much damage from Lyme and the energy demand on my system with receiving stem cells is too great. I have crashed hard again.

We were thrilled at the fundraiser event on October 14th. The food, the music, the venue all spectacular. It was an emotional day to see all those wonderful people come to support the treatment. The emotions, and being up all day was hard.

My Dr needed to boost my system more before he would give me more stem cells . I was excited to learn I was well enough for them during my IV treatment and would get them October 23. I was given a low dose of 35 million again to test my body’s reaction. I had just slept day and night for 1.5 weeks. After receiving the second dose and over the ensuing weeks I have had setback after setback.

Symptoms are returning. Rapid weight loss. Down from 158 lbs to 142 lbs and continuing. Days of painful diarrhea. Insomnia for 3 days. I am having cognitive issues. I forget simple things. My rash has returned this time on my face, hands and feet. Painful burning and itchy. I have scratched so much I am bleeding.

I have only had IV therapy again since October 23. I already behind 3 treatments. My Dr. is doing everything he can to boost my system. I have had various vaccines. Injections of embryonic cells. Various ion creams I apply on my lymph nodes each day. Some from a compounding pharmacy I apply on my wrists… pregnenolona 50 mg/g ( endogenous steroid and precursor/metabolic intermediate in the biosynthesis of most of the steroid hormones, including the progestogens, androgens, estrogens, glucocorticoids, and mineralocorticoids – used for fatigue, depression, arthritis). A topical cream DHEA 100 mg/g ( male hormone replacement as my adrenal glands are not functioning well )

A host of other medications to boost my system. Some of which are also antibiotics to combat recent co-infections. A controversial “medication” called MMS. It is supposed to acidify my system enough to help create an environment that bacteria can not thrive in.

This last Saturday. November 3rd we were supposed to meet friends in old town for a street festival starting at 2 pm. I was not well and stayed in bed. Gary went to meet everyone. By 4 pm I thought I was well enough to join. I got on the wrong bus and got lost. I Panicked. Had a subsequent seizure and was hospitalized over night. When I have a seizure I am disoriented and confused. A cab driver apparently took me to the hospital. I was coherent enough at 6 am to know to call Gary. How awful for him.

I stayed in bed all day Sunday Nov 4th. Monday I was to receive my IV treatment but instead another plasmapheresis was performed whereby my blood is cleaned similar to dialysis. Approximately a liter of plasma is removed with toxins. Dr felt it went well and yes, it was as bad as it was the first time.

Today I mainly rested as I am extremely week. Shaking, cold, and dizzy. But I will resume stem cell treatment tomorrow again.

It has been an emotional journey again these last three weeks. I at times wanted to give up. I secretly cried wondering why I am doing this all over again.

But yesterday’s appointment made me feel better mentally again. During the plasmapheresis we asked the dr if he had heard of Dendritic cell therapy. We had read about it from an article published from Lyme Disease Mexico, the previous clinic I was being treated at. It is showing positive results in treatment of Lyme in clinical trials. Well what restored my positive outlook yesterday was…

I will be receiving this treatment.

As soon as my body is stronger and they boost my immune system a bit more I will receive it! It is like a vaccine. They will inject dead Lyme bacteria so I “learn” how to fight them. This is great news as maybe there is a possibility of a cure? Or at least my body being able to keep the numbers down so I am asymptomatic?

Tomorrow morning is another big day.

Warren Bennett – Chronic Lyme Disease

#12: Humbled

October 15, 2018

I had all intentions of picking up my phone all week and doing another post. I honestly couldn’t. I was happy after the first IV treatment of stem cells last Tuesday. I was told the side effects may make me tired as my body is already exerting all its energy fighting this disease, and now it needs to divert some of that to the new stem cells.

I thought I could deal with that. My rash started to reappear slowly with burning and tingling sensation all over. My back and hip joints were really painful, so when I did get up it was slow and tedious. I slept all day Wednesday. Wednesday night. Thursday afternoon. I had started to become miserable and started to feel down. Angry at myself because, again, I started not to function. Embarrassed because things we just talked about I would forget moments later. Gary got me up at 4 pm Thursday and convinced me to go for a walk to get me out of the house. I did not want to go. But maybe something different than the bedroom walls would do my mental state good.

We walked down to the beach where he surprised me with our friend Kim. He had flown down from Texas just that day so he could be here for the benefit On Sunday to help with my medical expenses. A good friend Sheila Tequila and Francie Nguyen has planned to help by holding a benefit. I was tickled pink. Kim, Gary and I visited on the beach and watched the sunset.

I had trouble walking back to our house. My legs and hips were causing a lot of pain. One would think that all this excitement would wear me out. That night insomnia hit. I could not sleep. I got out of bed at around 1 am so I wouldn’t keep Gary awake.

I tried to write an entry in this blog. I couldn’t. I wasn’t motivated. I was still fairly shaky Friday afternoon and we thought I should stay home and try to get some sleep. Gary was meeting Kim on the beach that afternoon. Halfway through the afternoon I thought I should take the bus to the lab and pick up the rest of my blood test results so I would have them to take to the Dr. on Monday. Then walk to the beach to surprise Gary and Kim. They labs weren’t ready. I remember missing the chair as I tried to sit down to put my paperwork away. I don’t know if I had a seizure but two people helped me to my chair and stayed with me a few minutes. I needed to go to the beach.

I got lost because many hours later in the dark I was having a seizure as I hit the pavement by Plaza Characol . A taxi driver stayed with me as he called the police. They managed to find out where I lived and got me home.

Saturday was spent in bed trying to sleep but I was too fidgety and in pain. My knuckles started to hurt. The lower back pain but from inside was excruciating. I was in pain all over from the seizures, from the pavement scrapes, embarrassed, frightened, and angry all in one. I cried most of the day. I didn’t sleep Saturday night either.

Sunday was going to be a big day at the fundraiser and even if I wasn’t doing well I just had to be there. We went to sheilas house at 11 am to help with some last minute things for the opening at Noon.

What an absolutely classy, professional event. I tried to be upbeat and not let anyone know what happened this week. Everyone who was here was genuinely here to help and have a good time. I didn’t want people to look in my eyes and see inside.

I will write a whole separate blog post about the event. Up to the time of arrival my depression started to consume my thoughts and energy and I kept dwelling on how awful the week had been. Again how I had frightened all those around me. This disease has taken over. The only thing I keep thinking was why am I trying to fight this again. I said I wouldn’t do it anymore. The excitement of Tuesday when I received the first treatment is gone.

Today, Monday, I had a pretreatment at the clinic for more IV nutrients for the upcoming stem cells on Wednesday, plus ozone. After talking to the Dr how I responded this last week, the stem cell treatment for this week is suspended until they can boost my energy again. I will still go Wednesday but for different treatment. No stem cells.

Deep down this made my heart sink. The worst fear again. Yet another treatment I’m failing at. Emotionally I can’t take another failure.

There is no cure for Chronic Lyme, Warren”

Those words are resonating in my head. Today I can’t hold back the tears every time they go through my mind. Maybe it’s my hormone imbalance. Maybe it’s because I am in a lot of pain. Maybe… maybe…. grrrr.

Maybe it’s because Lyme is winning. I just can’t deal with another epic failure. Lyme is winning.

Warren Bennett – Chronic Lyme Disease

#11: Stem Cell Day!

October 9th, 2018

This past weekend was an emotional journey for both Gary and me. After Friday’s pretreatment I was nervous about how my body would react after the plasmapheresis. Quite honestly every time I thought about the Umbilical cord stem cells I was going to receive I started to feel incomplete and dirty again, the same feelings I had during my 8 previous blood transfusions. The good news on Friday was that I could introduce poultry and fish back into my diet.

This was exciting for me ’cause it was Canadian Thanksgiving this weekend! Not many restaurants in Puerto Vallarta cater to Canadian Thanksgiving but this year it seemed everyone was! And that meant I could eat Turkey all weekend!!

I was tired, and in keeping with the spoon theory I mostly stayed in bed so I could save my energy for the two or three hours we would be out for dinner.

I started having severe pain in my lower back on both sides. Was so painful that I could barely roll over and even the weight of my body when laying down made it hurt even more. I would have to roll over on my front and push myself up with my hands to sit. Once up the pain was bearable.

I started passing blood. . I knew my kidneys were approaching stage 3 kidney disease but this has never happened before. My emotional state was up and down. Although I was having all this pain, I also saw that my skin rash was all but gone by Saturday night. A wonderful side effect of the plasmapheresis cleaning out toxins. For this I was elated.

Maybe this Dr. does know what he is doing. But I had to be cautiously optimistic because I don’t want to fail again. I would feel excited and hopeful one minute, fearful the next, dirty when thinking about the stem cells I would receive, then cautious as I don’t want depression to fill my being if this treatment fails.

We made it out to two turkey dinners over the weekend. Oh my I was in heaven. Even tho Gary is not a fan of turkey, he knew this was a big deal as lately we haven’t had a lot to look forward to.

But this Thanksgiving I had so much to give thanks for. I had an unwavering supportive husband and without him by my side I couldn’t do this. He makes me strong. Also, not only for the food set before us, but for the genuine outpouring of love and support from our own family, but also from our extended family and friends we have here. Puerto Vallarta is a very strong community and rallies behind people in need. People really do care.

Today I mainly rested again in bed saving energy for my 4 pm appointment. I was emotional, and trying to hide that made me difficult to be around today.

The appointment went well. I had a saline IV with nutrients to help the stem cells. They injected 2 vials of Ozone gas into my IV. Dr Edwardo Lopez amd his nurse Pablo made sure the stem cells were well suspended in two separate vials of saline. I had to look at them. I had to touch them. What I can’t see that is alive in these vials is what is going to give me my life back. Give us our life back.

Although only 35 million of the 700 I would receive, we both looked at the vials and at that point I became thankful. The feelings of being dirty was gone. Theses little living things in these two vials are what is going to kickstart my immune system and repair all the damage caused by Lyme.

There could be possible side effects, dizziness, headache, fatigue all as my own “old” body ramps up to work with these new cells. This was good news. The other good news was the pain and bleeding this weekend was most likely caused by my kidneys finally passing sharp and hardened poisons it hasn’t been able to pass because I was so toxic. As they passed they scraped my insides causing considerable pain and bleeding. The bleeding stopped today when the pain stopped.

This also was good news!

My body needs a rest to ramp up. Next Monday I will go for another pretreatment of saline, nutrients for the stem cells, and ozone. Followed on Wednesday by 100 million stem cells.

We also discussed additional treatment targeted specifically to my kidneys. It would be a six month program with millions of additional stem cells. We will talk about this as the additional cost is another 80,000 pesos. We are already stretched for this treatment At $180,000 pesos. We want to see some results before jumping in any further. Cautiously optimistic.

This really is going to work.

It just has to!

Warren Bennett – Chronic Lyme disease

#10: Cautiously Optimistic

October 6th, 2018.

This May be a long post. Some pics may be graphic. My mind is scattered I have so many thoughts running through my head. I’m still tired, had a restless night and was awake until around 3 am with my head hanging off the foot of bed with nausea. I did wake up at 7:30am today feeling ok and we went up to the terrace for coffee and watch the sunrise. I changed a light bulb and am back in bed. That was using a lot of my 12 spoons already.

I also apologize in advance, I have built web sites, done SEO and love all kinds of tech stuff. Maybe I’m not thinking straight but when I started this blog I posted some pages as web pages and some as blog pages. I realized this after entry #8 and messaged tech support. I have to copy and paste each web page into a new blog post but must start from entry 1 to keep the order. Unfortunately all who have subscribed will get a notification for each one starting from the beginning. I am sorry for this but now I know how to write a simple blog. Go figure….

So yesterday was an emotional day. It should have been an easy day with excitement for my new journey. It was a day full of emotions and stress. Gary is the love of my life and is living this nightmare with me. We tend to focus on the person with the disease. But the truth is spouses suffer even more. They truly live the pain along with you as if their own. Then they have the added anguish of their own emotions. I can’t imagine how hard this must be. What toll this is taking on Gary? I feel guilt about that. Every time someone asks how I am doing it really should be how are you two doing. It really is about our journey through chronic Lyme.

Yesterday I still had the rash on my arms, my belly and legs. It started to tingle like pin pricks as well as itch. In the past it was a sign it was going to get worse. I’ve scratched some spots so much they have started to bleed. It makes you insane. Creams, oils, etc don’t work as it is the toxins coming through my skin from within. The joint pain and internal pain are a given every day. I stayed in bed all day leading up to my appointment at 4 pm. Gary had to go to the bank so we could transfer some money to the Dr in order to start treatment. Dr Ernesto Lopez and his nurse Pablo are so kind and compassionate. They have allowed us to pay in installments as they understand the the added stress of finances.

I became more panicked the closer it got to the appointment. I became bitchy. We had to stop at the lab first to pick up the remainder of my test results to take with us. We opened our gate to back the Jeep out and a Telmex car ( local phone company ) was completely blocking our driveway. Of all days.

I saw the Telmex guy at the end of the block. We have had our internet and landline phone down since August 23. Phoned in complaint after complaint and today they show up without notification to fix it and need access to the house. That poor guy. Wrong place. Wrong time. By the end of me chewing him out I was welling up with tears. Today was too important to be late for the hospital.

So the treatment was interesting. Started at 4 pm. It was a total of 4 hours and I’m usually in bed around 8:30pm lately. It started with a bio scan. Something out of Star Trek! I was hooked up to electrodes on my forehead, metal plates on my hands and bare feet. Less than 5 minutes and tada …a whole 3D image of the inside of my body. My organs in cross sections, individually, along with how well each is functioning. Each was color coded – grey for good, yellow for caution and red for critical. Overall was generally good but showed areas of concern. All from the effects of Lyme Disease.

We reviewed the results immediately. I will have another bio scan done at the end of treatment to show the percentage improvement.

  1. Brain – it found one which we both thought was good. Bad is that three areas are swollen and cause of my memory failures and seizures. Colour coded red.
  2. Liver – swollen and has 3 cysts. Colour coded red.
  3. Kidneys – enlarged and producing highly acidic urea acid and resulting in stage 2 kidney failure. Colour coded red.
  4. Adrenal glands – extremely large and swollen. Not functioning. Hormones out of whack contributing to rapid mood swings. Putting pressure on the top of kidneys adding to the lack of control to urinate. Colour coded red.
  5. Spleen – Swollen. Not effectively cleaning blood and storage of red blood cells. Colour coded red.
  6. Prostate – Swollen. Reduced functionality and we all know what that does. Colour coded yellow.
  7. Spine and upper backbone – Compressed in upper extremities. Cause of pain and tingling in arms. What’s interesting and what validated the whole test for me was him commenting that I must have been in some sort of accident and these areas would cause neck pain and pain in the back of my head. That was when I told him I was in a severe car accident in 1989 whereby I fractured C3, 4 and 5. The problem he described before hand were bang on what I have lived with since the accident. Colour coded yellow.
  8. Lower gut – no explanation needed. Swollen. Colour coded yellow.
  9. Arteries – Hardened. Common with chronic disease. Colour coded yellow.

Holy shit I was thinking. I knew the kidney stuff and the brain. But really? These little critters live in your organs but I had no idea. All in all considering my body is overwhelmed fighting hard the last 16 months he felt it was a good report.

Considering…. that word created a sense of panic inside but we wanted to be optimistic. Cautiously Optimistic.

I was then hooked up to a machine to perform plasmapheresis. They remove the blood in stages. The plasma and toxins are removed, and the filtered blood, less the plasma is pumped back in. This process takes about 3 hours. All in all they removed about 1 liter. Gary sat there through the whole thing. Well ok he had to leave when the IV was being inserted and needles were given. He did good. He didn’t faint.

Healthy plasma should be clear with not much colour. This is what they removed from me. I also received 1 of four vaccines that they made from my own blood, plus another IV of saline, blood thinners and various nutrients to help when I receive the stem cells.

This Tuesday I will receive 35 million umbilical cord stem cells from a universal type O- donar. That way there is no chance of rejection. They will be “preprogrammed” to become immune cells. Each will multiply 60 times. Over the treatment period I will receive 700 million umbilical cord stem cells. I may receive more once the remainder of my blood work comes in. Each dosage I receive will also be preprogrammed to become the organ or tissue that is damaged as found in the bio scan.

This is positive. They are telling me they can repair the damage. They can boost my immune system to fight off the future attacks of Lyme. This made me cry. I took a deep breath because no other doctor has said to me “we can repair the damage.” All I hear is “there is no cure for chronic Lyme disease Warren.” I already know that. This Doctor also told me that from the beginning. But what he did differently was to say we can reverse the damage from Lyme and keep your immune system fighting it. He didn’t promise remission either. This is inherently different. He is treating the effects of Lyme. He is teaching my body to fight. It will be an internal fight the rest of my life. But I’m being given the tools to take on that fight. It is deeply emotional for both of us.

After treatment #5 failed I said I wouldn’t fight anymore. There is no cure so celebrate the good days and muddle though the bad. This is Warren’s new normal. Emotionally I can’t handle another failed attempt at a promise of remission.

But somehow this just feels different. Cautiously Optimistic…

Warren Bennett – Chronic Lyme disease

#9: 1st Day Of Prep

October 4th, 2018,

Well it’s 9:20 pm and I am exhausted. Today was a full day away from home and quite honestly I’m not used to that. My energy levels are really low, something else those little bastards robbed from me.

The spoon theory-look it up. It is an amazingly simple explanation of why people with chronic diseases can’t do even simple things. A friend sent the video on YouTube to me at the beginning of my journey last year. I was struggling and frustrated that I couldn’t do anything.

Think of energy as spoons. We all have almost an unlimited supply to use each day. I have only only 12. A healthy person uses 1 spoon getting ready in the morning and off to work or school. The rest are spread out during the day.

I also have 12 to choose what I can and cannot do during the day. But to wake up and even get out of bed uses 1. Then to shower, brush my teeth and get dressed use another 1. Then I prepare my breakfast , coffee etc and I use another. Before I even get out of the house I’ve used three. I only have 9 more spoons and I have to get through the rest of the day. If I want to go to a function at night I know I have to sleep most of the day to save spoons for the evening. Most days I am out of spoons by noon. It’s a great analogy. https://youtu.be/Hh59lPG5ifk

It was powerful watching that video. It made so much sense. I had tears on my eyes because that was me. Somebody gets it. Somebody really gets it.

So last night I said I was tired. I was a bit nervous about today even though they were simple tests. I didn’t sleep. Of course all nights for insomnia to kick in. I couldn’t drink or eat anything after 10pm. I laid in bed all night awake thinking god I’m thirsty. Nope. Don’t do it ’cause the tests are too important to mess up. So I wrote entries 7 and 8 until 4 am this morning. 4:30 I finally dozed and the alarm went off at 7:30am.

We got ready and had to do to the bank first so we could pay for the tests today. Then to the clinic for my bloodwork and ultrasound and x-ray. All went ok. Except all my blood work wasn’t completed because one of the blood samples was to go to Guadalajara and the courier already left. Grrr. Back on Monday for A9 am after another night of fasting.

Finished at 11:30 but told to pick up my x-rays etc at 1pm to take to dr. Went home and Kaye’s down for an hour. Gary woke me up at 1 pm and we went back to pick up. Got the x-rays but told to come back late afternoon to pick up the rest of the results.

Too tired. We went and picked up some more medication amd got home by 4. I crashed. Slept two hrs. We ate dinner and now I am in bed wide freakin awake looking forward to another sleepless night.

I took a new herbal “medicine” that we bought today, supposed to even knock out heavyweights. We will see. If it works I’ll tell you all tomorrow. Not much else to say. What a day. It was nice to see something other than the bedroom walls. Even if they were the white walls of the clinic.

I feel sorry for Gary today. I was an asshole. My mood swings were intolerable. I know it’s hard on him. This amiantos his fault but I lash out and get angry over simple stupid stuff.

I feel guilty. I feel bad. I am an asshole some days. Plain and simple. Unfortunately those days are the normal ones lately.

Lyme has not only robbed me of dignity, of my health, of my sanity but it is also doing the same to him. And for that my heart aches more than you know.

Warren Bennett – Chronic Lyme Disease.

#8: New Normal

October 3. 2018 3:00 AM

It’s February and I was back in Puerto Vallarta. The first two weeks I stayed at home recuperating from being away. I had just spent 54 days away, in hospital everyday. I wanted to get out and do everything it I couldn’t. My body wouldn’t let me.

I started to have seizures while in Canada. They continued. Gary has never experienced one before and it was frightening. I had three back to back. Luckily when we talked about my health we talked about the now 27 symptoms I had with this being the newest. How to deal with me when having one.

It was traumatic for both of us. I don’t remember anything about them other than being in a lot of pain and being bewildered and frightened when I come out. Unfortunately these have continued and I have had 16 since January. No medication helps.

We got through spring albeit we had our ups and downs. Symptoms would come and go amd by the most part I was doing really good. A delayed reaction from the Canadian treatment? Perhaps.

I flew back at the beginning of May 2018 for a follow up amd being prepared that I would undergo more treatment. We were elated that I was in remission. I returned a week later. because I was feeling so good I amd I only had a duffle for luggage I said I would take the bus from the airport. One bus 15 minutes.

I got confused. I got on the wrong bus. It turned where it wasn’t supposed to. I was lost. I didn’t know how to get home. I panicked and got off the bus. I started crying. I had no more pesos. I hadn’t charged my phone. I was lost for three hours.

As summer progressed life was near normal. I still tired out quickly if I did any physical activity and when the rash appeared it was not as severe. Before it burned and itched and there was no cream or medication that would relieve. It was the toxins from inside coming out and that itch and pain was inside. But these latest instances were tolerable.

My confusion progressed with time as did my seizures. Most were over a minute and some approached 3 minutes. One day I was going to meet my husband downtown and got on a bus at 1 pm from our house. That was Thursday. I never made it. I had a seizure on the bus and the driver and a patron sent me to the hospital in a cab. I don’t remember much until Friday morning when I awoke in hospital. I was given phenobarbital for seizures and it knocked me out again until around 11 am. I called Gary crying and frightened. God only knows the terror he was going through for almost 24 hrs. I was not on medication for seizures as I was told they are ineffective in my case.

We got a dog tag made up with my name, Gary’s phone number, medication I’m on amd illness written in Spanish. That was if I got lost again I could be identified by authorities. It happened again.

I went to the corner hardware store. Had a seizure on the way there as I remember getting up off the sidewalk. No one helped. I was lost. I ended up by Walmart by marina Vallarta and asked a police officer for help. He went through my things, searched me and stole my charging block, cables and extra battery out of my murse. I remember picking the rest of my belongings off the sidewalk. He left me there crying. My phone rang it was my husband looking for me again.

I started getting sick again mid August 2018. I mean really sick. I was back to being in bed all day. Diarrhea. Severe pain. The rash was back but brutal. This picture was taken mid August.

My torso was covered. My legs. Inside my ears. We hopes I was having just a Herx reaction again. I was better for a few days and got back out to see friends. People thought all was good and had no idea.

I am officially out of remission. Last week I again was crying in the shower from uncontrollable dysentery.

We looked into stem cell therapy. Extensive research. It has been suggested before as a benefit but I was in remission and besides it’s not a cure.

I vowed that after my treatment in Canada I would accept my disease. We would deal with it as I had flair ups knowing that they will happen again. It’s Warren’s new normal. I couldn’t get my hopes up again only to fail and be devastated. That what I told myself.

Here we are again. The thought of a treatment to help when you are weak and vulnerable is too strong a pull. I know there is no cure but I can’t live surrounded by the four walls that are our bedroom. I just can’t.

What scared the shit out of me is the failure. It’s happened five times in the past.

There is no cure for chronic Lyme disease Warren”

Warren Bennett -Chronic Lyme Disease

#7: Another Month in Canada

Back to December 2017. I managed to continue my treatment program in Canada. 7 days a week. Without the support of my husband in Mexico, and my parents, sister and nephew i couldn’t have continued. There were nights when the last thing I wanted was to be around anybody. But my mom prepared precooked meals to take back with me and kept me fed whether it was at her place or not. My sister checked in regularly and kept my spirits up.

I took a course at the hospital on dealing with a chronic illness. It was tough, it was raw, emotional, enlightening all rolled into one. It thought that one of the hardest things about living the chronic life was teaching others how to act around you.

Believe it or not there is anger when people say to me I’m so sorry. I think what are you sorry for ? You didn’t give this to me. When people jump up and do something for me. This came out loud and clear at the dinner table at moms. I was having an extremely bad day. My hips weren’t functioning well, my back was extremely soar, sharp shooting pains and swelling in my joints. I also had been awake for 3 days at that point. I couldn’t form my words well. If you asked me something I mumbled trying to find words and it took what seemed like an eternity to speak.

I wanted ketchup from the fridge. I braced myself on the table and struggled to get up. I was hunched over the table and my mom jumped up to get the ketchup out of the fridge. I slammed my fist down and yelled at her to sit down.

I was crying. She started to cry.

The emotion was so strong. I told her to let me do this. Today I can. It’s a major struggle but today I can! I told her to celebrate these days because a few days ago you were cutting my food and fed me. She, through her tears explained that parents aren’t supposed to see their children suffer. She can’t just sit there and watch. Yes I was struggling mom. And I can’t imagine the feelings you have watching me. Unable to make me better. But I must do this and again let’s celebrate the days I can.

I don’t want sympathy or pity. I want your support. Catch me when I fall. Be with me. But all I have left right now is the little bit of independence that allows me to get that ketchup. Because from 7am until 4pm the doctors and nurses make all my decisions for me. Lyme makes the rest. We both cried. But I think deep down on some level my family understood.

I continued treatment and January 31st I had mid treatment bloodwork. The news was not good. I had worsened and was not responding to therapy. Gary and I talked. I spoke with the doctor and asked what chances of improvement is there if I continue to the end of February. There should have been some progress it’s been since December 14 2017.

Gary and I decided that I would give two more weeks of treatment and requested blood work again. If there was a marked improvement I would stay. No improvement I would discontinue.

I discontinued treatment two weeks later. Devastated. Defeated. Again. People didn’t believe that there was no cure. This again built up anger inside. I was already defeated and now I was perceived as a failure for not fighting. What people didn’t understand was this is my new reality.

This is Warren’s new normal.

It was a painful goodbye to my family. I returned to Puerto Vallarta MX February 9 2018 in almost as worst shape as when I left.

What I had going for me was I had started to gain weight. The doctors had put me on Oxi-methalone an anabolic steroid used for anemia. I also was on antidepressants or what I call my happy pills. They helped take away the thoughts of suicide and leveled my mood swings. My doxycycline was increased from 100mg twice a day to 200mg.

This was Warren’s new normal. And I had to teach everyone this all over again.

Warren Bennett -Chronic Lyme Disease

A Race Against Time…against Lyme.

October 2, 2018

This blog is about my journey since contracting Lyme Disease. I’m calling it “A Race Against Lyme.”

It’s about education. It’s about understanding what this disease is and what it does to an individual and their family and friends.

It’s about offering hope to those who suffer in silence. It’s my diary.

It’s about my emotional and physical journey the last 16 months and becoming chronic.  Subsequent entries will also detail my upcoming journey and progress through a relatively new treatment of Umbilical Cord Stem Cell Transplant which I hope to undergo this Thursday or Friday.

The idea of a blog stemmed from reading others journy’s and struggles with this horrible disease. As I searched for new treatments and the miracle cure, I came across a few other blogs and found them inspirational. They gave me hope that there is treatment out there that will make me feel better, and return me to a life that I used to call normal, albeit knowing there is no cure. The best I can hope for is an elongated remission.

Thank you to my husband of 27 years who has always stood by me and encouraged me to write this. To Nancy Real who’s comment on my Facebook page last year encouraged me to share my journey.  To Penny Trask who who’s daughter suffered for 17 years and was instrumental in helping me cope with the ravages of this disease. Also to all my numerous friends and family who have stood by my side and offered their outstanding support to both my husband and me.

Warren Bennett – Advanced Chronic Lyme

Puerto Vallarta, Jal, Mexico 🇲🇽