So a personal post for Sunday…
I tested positive for IgM antibodies for Lyme Disease (and co-infections) several months ago. I’ve tried treating it with antibiotics for about 3 weeks until I couldn’t take the worsened symptoms (joint pains, brain fog, headaches, fatigue, muscle pains) and the emotional symptoms (jumping between crying and anger for no reason). I then kept to my regimen of natural remedies. I was taking: cat’s claw (don’t worry – it’s from the bark of a tree – not from a cat!), ashwagandha, CoQ10, probiotics, turmeric, zinc, Japanese knotweed, many homeopathic tinctures, and other natural remedies. I got a children’s dose of GcMAF from my holistic MD. It’s supposed to boost your immune system if you have a low level of natural killer cells and a high level of nagalase (which bacteria and other disease-causing agents like cancer and HIV put out to “turn off your immune system.”). I did a lot of traveling last month, so haven’t had a chance to try a series of full doses (they are VERY expensive anyway, which is an issue).
Then my sister (a psychiatrist MD) told me that her rheumatologist told her that he had, “never seen a negative response from Igenix” (the lab that did the Western Blot lyme test for me). I was skeptical, but then my fiance tested positive for lyme! It IS possible that he could have caught it from me, but it seems unlikely and he has NO symptoms. So, I heard about a new test that doesn’t look at antibodies, but actually creates a culture of the bacteria with your blood. It’s called iSpot Lyme. I had my doctor order the tests for myself and my fiance.
THEN I hear a news article that says the owner of the iSpot Lyme test – Pharmasan labs – was convicted of fraud, and may not be trustworthy! I don’t know what to do now! I don’t know if either of us REALLY has lyme, and I don’t know of a good test to figure it out. I don’t think one exists. It doesn’t help that there’s a battle going on between two camps of doctors – those that believe in long-term “chronic lyme” and those that don’t. There are many doctors who don’t know much about lyme, period. For an eye-opening experience, watch “Under Our Skin” – a documentary about the wars going on. It’s a little dated, but still relevant. The CDC has change it’s guidelines. Previously, it said there were only 30,000 cases per year in the US. Now they are saying there are 300,000 cases. Some studies have shown that lyme disease may be the newest STD!
I clearly have adrenal and thyroid issues (lyme-induced or not), and now I’m being told I have leaky gut (which may explain my auto-immune symptoms and weird response to even small amounts of probiotics). I’ve been taking cortisone and it makes me feel better, but I don’t think it’s something I should be taking long-term. I have to get my adrenals working before I can fix my thyroid. I’m going to see a new doctor who specializes in hormone problems very soon. I may also see if I can get myself an MRI to test for pituitary gland tumors or other nasty things.
I also have MTHFR, CBS and COMT – genetic mutations that make a lot of things more difficult. Detoxing is extremely difficult and rough (even saunas can kick my bum), and I have issues with sulfur in foods and whatnot. I think everyone (ESPECIALLY PREGNANT WOMEN) should take the genetic test at 23andme.com. You can then feed your results into Genetic Genie (or a simiar service) to see what mutations (or SNPs) you have.
All of this leaping from doctor to doctor, not getting a diagnosis I can trust, and NOT getting better is really taking a toll on me. I feel like an old lady and I’m only 34! My insurance is also terrible, and as soon as I can change from an HMO to a PPO, I will.
One of the things that makes this hard, is that I don’t LOOK SICK. I’m overweight, but that’s hardly uncommon in this country. The day to day breathing problems, migraines, joint pains, muscle pains, fatigue, swollen lymph nodes, swelling and other issues are pretty much invisible to most people.
My mom and my sister have different, but similar auto-immune-like symptoms. Neither of them have received a real diagnosis either. If anyone has experienced anything like this, I’d love to hear your story.
NOTE: This is not medical advice. I’m not a doctor, nor do I play one on this blog. So get yourself checked!
Have you tried going gluten free? Someone I know had issues similar to yours – chronic pain, migraines, joint issues, chronic rash and such – and was going nowhere with her doctors. Told her to try gluten free and in three weeks the pain and rash disappeared. Worth a shot if you haven’t already.
I was going to suggest the gluten-free thing too. My mom had some undiagnosed but Lupus-like auto-immune disease about 15 years ago. She switched to gluten-free, and now the disease is undetected. She also went off the gluten-free thing years ago, but is still healthy. Feel better.
Hello, dear. I can’t begin to imagine what you are going through, but I do try to sympathize. I went through eight months of doctor visits, ER trips, MRIs, X-rays, and new doctors trying to figure out a problem I had with my foot. One day a neighbor suggested I go to his Chinese doctor. I said why not, I have nothing to lose. After being in his office for less then 15 minutes he had told me what was wrong and got me on a treatment plan. Turns out, my kidneys were weakened from my diet. He changed my diet and put me on some supplements, which I only had to take for about a month. I’m still on the diet to stay healthy, and I have no more problems at all. I suggest looking in your area for Chinese, or eastern medicine doctors and going through many reviews, until you find one that you believe may help you. I hope you start to get answers and results soon. Good luck , dear
My heart goes out to you. Anything that is debilitating and especially when you can’t figure it out, is terrible. I would look into Activated Charcoal. It is an amazing remedy for many, many things. You can buy it in capsule form at most drug stores. I always have some on hand. I hope you get to the bottom of it and feel better soon.
Only when I finally went to an “Infectious Disease” specialized physician was my Chronic Fatigue, Lyme Disease & Epstein Barr virus diagnosed after years, and I mean years, of suffering. He was amazed I was even able to move. (One dr. had said I had a virus and needed to “wait it out”, another one said I just needed to exercise and put me on Paxil (which I only took for a month because I knew this was not in my head.) I was literally half dead. He would only send his Lyme testing to Quest Diagnostics because he said they were the most accurate….and this in a city full of medical centers and hospitals (one of which his office was in their building). Gave me the usual treatments but since I had had it for so long without being properly diagnosed, he now considered me a chronic lymer! Have you been to an Infectious Disease physician? That might help them sort this all out for you….
i was at a dog event and there was a kinesiologist there, she was telling me abt bone broth for dogs, which is excellent for health, but there is also bone broth for humans, which is supposed to be very good. it takes a long time to make, organic beef bones, spring water and 2 tablespoons of organic apple cider vin. which extracts the minerals from the bones, you cook it for 18-48 hrs, simmer, let cool, take off the fat and use the jelly. it is good for bone regeneration, and over all health. i have been using it on my oldest dog, almost 13, who has arthritis. google it. hope you feel better, you are lucky that you found a dr that knows abt it, most dr will diagnose it incorrectly. check also the medline website, govt health website.
You might have Lyme (or Miyamotoi) you might have CIRS (mold toxicity) or you might have both.
I,m on my third week of anti-biotics, symptoms have abated, still tired on and off with some aches. I have RA, so hard to distinguish. My first blood test came back positive with elevated liver count & blood in my urine. back to the Dr. this week. we shall see.
While I did not have lyme disease, I suffered from a weird auto-immune disorder for more than 10 years – in and out of emergency rooms, different doctors and no answers. I tried acupuncture, which helped, but the constant cycle of sickness and depression which led to more sickness and depression really took a toll. Ultimately, I ended up healing myself through prayer and meditation and have become a huge believer in mind over body. I am sorry I do not have a better answer, but I will send healing thoughts your way!! Thank you for your blog and caring so much about animal welfare. I really appreciate all that you do and wish you a speedy recovery. 🙂
Has your doctor talked to you about fibromyalgia? Your symptoms sound so similar to what my mother and I experience on a daily basis and we both have fibro. I can not remember a day where I actually felt good or even rested. Good luck with getting a proper diagnosis and treatment, I understand how frustrated you are. I have yet to have a doctor help me with my sinus and migraine issues after years of trying.
Take it for what it’s worth but I have Lupus with Fibro and other complications and I have tested positive for Lyme in the past. But I have never been treated for it. It just seemed silly since all of the symptoms go hand in hand with Lupus. An autoimmune disease is hard to diagnose so don’t give up hope. But please, please go to a Rheumatologist and talk to them about it. The fact that your mom and sis have both been told they have some kind of autoimmune issues is common with Lupus. My mom and sister both tested positive but with no symptoms. However my sister does have MS. The fact that you feel better with prednisone (which by suppressing your immune eases symptoms). Now here’s where I might just piss you off. I am a huge believer in holistic medicine. But sometimes it HAS to be in conjunction with western medicine. So use it to help support your immune system, but remember,if you use them to treat other symptoms they could very well keep you from getting the proper results on tests. Just be sure to keep a list and I would suggest abstaining for at least a few days prior to any blood work. Honey, I am 51 years old and have had Lupus for 34 years. I have, or am dealing with every single symptom you’ve mentioned and others to boot. So I feel your pain and will keep you in my thoughts and prayers. You have great support and believe me, that’s half the battle. One of the mottos for Lupus is “But I Don’t Look Sick”!
I have fibromyalgia, and a lot of your symptoms sound like it could be fibro. Of course, that’s just a catch all for “there’s something wrong, so we’ll call it that”. I have to say for me giving up wheat (I’m not allergic to rye or barley so can have some gluten) and getting acupuncture to balance things as well as D3 and B12 vitamins have given me great relief. May not work for everyone, but you could try
Lyme disease is dangerous to skin health. Everyone should take care of skin health by using best antifungal soap for foot and body wash. It provides a solid protection from skin problem and keep them away from skin immune system.
Wish you the best recover i can! Hopefully it’ll be over soon! I’ll pray for you today!
Xoxo,
Helô, from vestidododia.com.br
I just found this blog and I’m so happy I did! I am CDC + for Lyme and my Mom has had so many health issues my whole life. She’s been tested for everything and it’s always normal except her C reactive protein. She finally got tested for Lyme after I got diagnosed and we’re waiting for the results. I’m new to this but hope to find some relief soon. Hang in there!
Lyme disease is very dangerous for skin.We must be very careful about these diseases.you give good information. thanx for this sharing.
Wow, you have been through a lot. Please keep your attitude positive. I work with a number of alternative health professionals and medicine at all levels is a “practice” as they say. Keep your mind open to all options and know that your immune system is heavily involved in this issue.
Lyme disease is dangerous but keep your attitude always positive and be strong.