It’s been nearly three years since I first found out I had Lyme disease (and other Tick borne infections). I’ve come a long way in those three years and I’m still hopeful that I’ll improve enough to have a somewhat normal life again. But it takes a really long time to get well depending on how long you’ve been sick, (at least 15 years for me) how old you are, (I’m 54) and how many different kinds of infections you have (I have at least four). I hear numbers like 3 to 5 years, but there just aren’t that many accurate statistics out there. This disease, like most I’m sure, affects your emotions as well as your physical health. And right now I’m very depressed. I had been doing really well (relatively speaking) in the late summer and early fall. But I’ve been going downhill lately and I’m not exactly sure of the cause as there are a few different factors to choose from.
1 – This healing process has always been two steps forward and one step back. So maybe this is just my one step back.
2 – My Dad was injured last October. He had been living in Washington with no one living close enough to care for him. So my family had to figure out what to do so he could get the care he needed. This was very stressful as I don’t get along well with a couple of my family members and I’ve been so worried for my Dad. We ended up moving him, last December, into an Assisted Living apartment about three hours from me, which means he’s finally close enough to visit. The drive and staying overnight is still incredible hard on me, but I haven’t seen much of my Dad in the last 30 years so I’m going to take advantage of this as often as possible. Which was twice in December, not a smart thing for me to do, but after all he is my Dad and I've been missing him so much.
3 – My expenses increase by $400 a month last October, so I had to cut way back on my supplements, medicine, treatments, and Doctor visits. My Dad was helping me financially, but now that his circumstances have changed that’s not really an option anymore.
4 – I had just gone through a really tough six months at work. My boss retired (in March) and I took on some of his tasks as they didn’t replace him, which at the time was easy and fun to do. Then the upper level manager got cancer and was gone a lot, so it was chaotic at best at work. Late in October that manager died, it was a great loss, and I miss him so very much. But we finally replaced the boss that retired and some of the stress was removed from me. But like a good little B blood type, did I just collapse because the “emergency” (of the last six months) was finally over for me?
5 - I got a bad case of the flu in early January. It's the one that starts out like a cold and in my case very quickly moved into a sinus infection. Believe it or not, it's actually good news when a Lyme patient gets a cold or flu. I haven't had a cold in many years! Usually our immune systems are so low our body doesn't even try to fight the new virus at all. But I'm in that in between stage, where my immune system has started working again but not quite well enough to take care of the job. I had to use some sinus sprays and other medication to clear up this new infection.
It’s so discouraging to have these nights again where I’m up all night long with pain and other uncomfortable symptoms. I’ve started to have trouble concentrating again and having memory lapses. The depression of course doesn’t help matters, but it’s actually one of the symptoms, so it’s not so easily overcome. Only time will tell what the cause of this set back is. My guess is it’s a combination of all five of the factors above. Here’s hoping last Friday night is as bad as it gets and I start moving back in the “right” direction soon.
I just talked to my Dad and he told me about his latest Doctor’s visit. My Dad is 83 years old and is in relatively good health for his age. He lives alone in Washington state and has a part time job at his church. My Mom died almost two years ago and had been disabled due to a stroke the two years prior to her death. My Mom had always taken care of the bills, the meals, and the cleaning. So after her first stroke my Dad had a lot to learn. He taught himself how to cook and pay the bills (the cleaning he’s never gotten very good at, but neither was my Mom ).
After my Mom passed, my Dad got more interested in his health. Like me he’s always leaned towards alternative healing, like vitamins, herbs, and foods that help the body. I haven’t been able to get him interested in the blood type diet, but I try to make suggestions when the topic of food comes up. Now back to his recent Doctor’s visit.
He was put on blood thinners a while back to help with his heart. I have my own opinion about that prescription, but we’ll let that go. He’s been on them for at least a year and they test his blood regularly to make sure his dose is correct. This week they found out that his blood had thinned too much and so this is what they told him to do.
• Stop taking the medicine for one week
• Start eating dark green vegetables to help thicken the blood (these had been removed from his diet when he started the blood thinners)
• Stop eating berries (that help thin the blood)
• Next week once his blood has thickened back up, start taking the medicine again
Am I the only person that thinks this is ridiculous? I mean if your blood thinned because you were eating well and taking helpful supplements, as he’s been trying to do. Why not just stop taking the medicine altogether? Why thicken the blood to only thin it again with medicine? I can’t help but wonder what his Doctor’s thought process was.
I wish I could interfere, but I know my Dad will do what his Doctor asks of him. And it’s not my life or my decision. So I just listen and hope that he continues to eat well. Thanks goodness they didn’t ask him to stop his supplements, which were probably helping.
An update on my health: I have really turned a corner the last four months. There seems to be a big change in my health (I’m being treated for Chronic Lyme disease). My pain has decreased greatly and I’m able to work and think better than I have in years. My strength is good but my stamina is still lacking (due to the trouble with my heart) although it has also improved. I can walk farther than I use to and I can garden longer. I’m feeling cautiously optimistic about getting well! But who knows, this disease is very tricky and takes a long time to recover from. And some of us have permanent damage, but I’m better than I was a year ago and so much better than I was two years ago. I owe much of my healing to the Geno Type diet (I have a personalized Swami) and the help I’ve received from others on this wonderful site. Thanks again to Dr. D and all the wonderful posters on the forum.
I was recently prescribed a new medicine to help with bio-film in my intestines. I have Lyme disease so extra measures are needed to help get my body back on the right track. My doctor and I discussed the dosage and because I’m so sensitive to medication we decided on a very low dose. The doctor’s office called in the prescription and my spouse picked it up the next day.
I started using the medicine and was surprised by how much I was affected by it. The fourth time I took the medicine I had such a bad reaction I nearly called an ambulance. But after about an hour and a half, the horrible pain, diarrhea, and weakness abated. The next day I thought “boy I’m sure glad I didn’t get the higher dose, that would have killed me”. But then I thought “hey, maybe I did get the higher dosage”. I never did check the package to see what dose it was!
So I looked, and sure enough it was incorrect, four times the dose we agreed on. The doctor’s office said they asked for the right dose. The pharmacy said they were told the wrong dose. Since nothing was in writing I had no idea who made the mistake that gave me such pain. But really, it was my responsibility to look at the package, wasn’t it? I couldn’t really blame the doctor or the pharmacy, mistakes happen. I have to take responsibility for my own health, lesson learned.
By the way, my health continues to improve. It’s been around two years since I was diagnosed with Chronic Lyme disease which I contracted around 2003. The progress is amazingly slow, but I have much more energy these days. And my brain actually works almost like it did 10 years ago before the bites. I still have tons of pain, heart trouble, and various neurological symptoms. But they have decreased as well. My first step to health started with the Geno Type Diet and I can’t thank Dr. D enough for all his good work.
I eat a lot of veggies every week. I don’t do it because I think it’s good for me. I really crave them. Maybe it’s because I have had Lyme disease for the last 15 years or so and needs the minerals. Or maybe I’m just a little strange. But here’s what I eat pretty much every week.
Large bowl of salad (four large dinner plates of greens) two heads of lettuce, one bunch of parsley or cilantro, four carrots, one bell pepper, one fennel bulb, six mushroom (the veggies vary somewhat every week)
Stir Fry – 1 lb of meat - rice, beans, or quinoa - two or three large plates of veggies. Right now I like Bok Choy, Peppers, mushroom, onions, garlic, and zucchini.
Soup or Stew – 1 or 2 lbs of meat with at least three large plates of veggies. I make my own broth so that uses at least one plate of veggies. Then I put in one of two more plates toward the end of cooking. For the broth I like, carrots, parsnips, celery, celery root, onions, and garlic. For the dish I like kale, spinach, sweet potatoes, carrots, jalapeños, peas, and squash.
So by the end of the week I’ve eaten about 10 large plates of veggies a week! When I go to the store the check out person often asks how many people in my family to which I reply “this is just for me”!
I don’t eat a lot of fruit. Again it’s just a personal choice. I usually have 1 piece of fruit a day and about 8oz of juice. I have a strong reaction to sugar so I’m sure that’s what keeps me from eating more fruit.
I wonder what will happen as I recover from Lyme. Will I need this many veggies? Will I crave them like I do now? If I’m lucky, I will recover from this illness and I’ll find out. I’ll keep you posted.
I had a huge relapse in my Lyme symptoms starting mid July and I’m just now starting to feel better. It was quite a shock and disappointment to have so much pain and fatigue again after starting to feel so much better. I had a lot of sleepless nights again full of pain. I missed a bunch of work and found myself getting angry and depressed. This wasn’t how it was supposed to go. I had it all planned out. I was progressing through the disease quickly. My doctor said I was “on the fast track”. So why did I get so sick again?
I’ve heard many people talk about getting a huge relapse after feeling well, but I thought that couldn’t happen to me. I’ve worked so hard to get well. I’ve researched and studied. I’ve taken all the meds and supplements I was supposed to take. I’m 100% compliant on the Geno type diet. Why can’t I get well? One of the answers is simply that it’s going to take more time for my body to heal. I’ve been sick for at least nine years and possibly for around fifteen, even though I was only diagnosed 1 1/2 years ago. The real question is why would I think I would get well in only a year? After I calmed down a bit, I did a survey on one of the Lyme forums I belong to. The results were these: If you’ve been sick 1-2 years, it tends to takes about a year to recover. If you’ve been sick longer than 2 years, it takes anywhere from 2 – 10 years or more. This made me feel a little better but I still found myself restless and depressed.
I finally realized that I had been “waiting” until I got well to get on with my life. I’ve been fighting relentlessly against the disease, but I forgot about me! It’s really easy to kind of sleep walk through your life when you are in as much pain as I’ve been in for the last year and a half. It has often felt like I was just trying to survive the day or night. I just kept thinking I could hang on and soon my body would be mine again. But since my timeline didn’t match up to reality, it was time to rethink this crazy way of living I’d gotten so used to.
I’m starting to accept this disease. Not give up or give in. But surrender to the fact that I have no control over how fast (or if) I heal and let my body do what it has to do, without any added pressure from me. When I think about it, that’s what I’ve been doing. I’d given my body a deadline and when it didn’t accomplish the task by my arbitrary date I was not only disappointed, I was angry with it. Is that anyway to treat this body of mine that has been working so hard? I wouldn’t treat anyone I know like this. I don’t stand for it when others treat me in this way. This must stop if I’m ever going to find peace. It’s time to wake up.