I was just diagnosed with Lyme disease on Feb 13, 2014. Woke up with a red spot on my foerhead last May, had first blood test in June, another in Nov..both negative. I learned about IGeneX then had a third test in Feb. Both IgG and IgM were positive for IGeneX and 1 for CDC/NYS criteria. Started Doxy in late Feb. Tried to get into an infectious disease Dr here in town but they said IGeneX wasn't approved by the FDA so wouldn't take me as a patient. I'm driving 3 hours one way on Monday for my first appt to see a LLMD. I'm trying to learn as much as possible and want to make sure I have the proper diagnosis. Part of me is concerned that I have other issues going on. I'm very concerned about the lack of awareness about Lyme. I've always been in excellent health, am a regular Pilates and Hot yoga class attendee.. until now. Symptoms started out with left knee pain, ( thought I did that biking ) then both knees painful all summer, again, thought I did that in hot yoga. As the summer progressed my legs became weak and shaky, brain fog was terrible along with many other symtoms. Im the back of my mind the possibility on MS lingers. Any advice would be great. I don't have a lot to add at this point because I haven't been tested for any co infections yet and am still learning. This is a lonely disease that few understand. So sorry any of us are in this situation.
I hope you get a diagnosis soon, imalyme. This is the hardest part really, the not knowing what you've got and looking for a doctor to diagnose you. I hope our members will weigh in to advise you.
Sorry you’ve been struggling for diagnosis for so long. Sadly lots of people with rare diseases go through months or years and often some mis diagnosis on the way. I really hope you get a diagnosis soon so they can start treating you. Good luck with your appointment, I too had to travel a 6 hr one way coach ride for several appointments relating to my EM, thankfully I’m being treated locally now. Laura x
I’m so sorry you are within this battle of Lyme disease. You have just entered the whirlwind of a battle. Find out if you can get the “gold standard” treatment of 28 day Rocephin Infusion. I was sick for almost 2 years before this option was presented. Misdiagnosed on several diseases in the process. My neuropathy got so bad that my husband could not even touch me for almost a year. At the start of the infusion I thought this is never going to work because nothing else had, but on the 10th day of infusion I knew changes were happening. I inform my husband I thought I was getting better. On the 14th day when we woke up his legs were crossing mine, this never would’ve happened before the Rocephin treatment. On the final treatment of I felt like a whole new person, it was unbelievable. I will be honest with you it doesn’t mean that it’s gone, it means it’s something that is controlled. I still have flareups every now and then but nothing like before. I am afraid that it will come back and when it does it’s going to be horrendous, but at least I know now what I can do for treatment. I wish you well, good luck.
Driving 3 hours one way is just crazy, but we do what we have to do get well! It sounds like you are heading in the right direction with your determination as well as your research. There is always so much to learn about all rare diseases, even my Doctors pull out their iphones or run to their office to get on their computer to find things out, and I love them for that!
I hope you get good results with your treatments, and can notice a significant improvement in your health very soon!
Sorry that you have to have this disease but at least you know now. It is a lonely disease as you said, but there are many who share it and can offer one another support. It makes such a big difference. You won't feel so alone. I hope your appointment goes well. It's been a learning process for me and keep trying to find ways to keep my symptoms under control and try to strengthen my immune system in any way that I can.
Thanks to everyone for the words of support and encouragement, it means so much.
A question.. I'm beginning to have twitching in my left hand and 1 finger, occasionally my left arm, this morning my right foot, have any of you experienced this? I've noticed for months that I drop things now and then, have lost a lot of strength in my hands. I'm assuming that's part of the Lyme.
I'm a fairly new widow and was putting off the exhaustion, problems sleeping and other symptoms to my grieving, now I know different. I've lost my wonderful husband to an accidental death, thought I would always have my health, life certainly is challenging. It's a scary thing to deal with alone.
Thanks again for your help dealing with this horrible disease. I'm now on a mission of awareness.
I'm sorry about what happened to your husband. Sometimes it's so hard to imagine why these things happen and why loved ones are taken away but God's timing is not the same as our timing, the reason unknown to us. I'm glad you found this forum and you can find some support emotional support here and good information.
Regarding the twitching, I've had facial twitching on and off, weakness in hand and dropping things frequently. it can be part of the lyme. Lyme bacteria do like to eat up our nutrients. I keep check on the micronutrient levels, especially magnesium, which I understand, lyme organism feed on. Deficiencies can cause some neurological symptoms.
Work with your doctor regarding these things and doctor may run some tests and advise some supplements for you to take. I haven't been getting much twitching lately and I did replace a lot of the deficient nutrients.
This lyme disease reminds me of the saying "like opening a can of worms" because once you start checking on things you do find a lot of other problems and some can be alleviated. When our immune systems are down, we weaken in many more areas. I've developed terrible allergies/sensitivities to chemicals, foods, electromagnetic fields such as computer, tv, lights, you name it. Everyone is different but there are a lot of similarities amongst us.
Do you know if there is a support group in your area where you live? That can be extra helpful to know others and meet with them to compare strategies and gather information.
Things can improve. It may not be easy but try not to get discouraged. You're definitely not alone in this.
Thanks so much for you response, it has felt like I'm fighting this alone, so glad I found this web site and all of you , sadly though that we are all going through this. I don't know of any support groups in my area, maybe I can find one through the Dr I see on Monday.
I do take a lot of supplements, always have. I was diagnosed with Fibromyalgia in 1983 and have been taking magnesium daily for that. It's been under control through a healthy diet, supplements and exercise. I hope at some point I can figure out a way to treat this holistically. I don't take and have never taken RX's on a regular basis, until now.
I'm a Susan too, but chose SK, as I belong to so many groups here on Ben's Friends and found the initials to help everyone determine 'which Susan'. I am deeply sorry for the loss of your dear husband, I hope that you will find comfort and health very soon.
Our Ally is a gem, she is so well versed in this and many other diseases, and such a kind and giving soul. Those that she once nursed can consider themselves very fortunate, and now we count our lucky stars to have here here with us on Ben's Friends, as her health allows.
She and I have corresponded here for the last couple of years and I can tell you that she combines many traditional AMA treatments and meds with Holistic type of Doctors and supplements. I am learning!
My friend Jen, who I also met on the Fibromyalgia site, was very sick for years before she received a complete diagnosis of Lyme disease, and is not well right now, so I'm here helping and learning.
Please let me know if I can help with anything. I'm so glad you found us!
Susan, Thanks so much, you have no idea how much that means to hear your words. It's a lonely, scarey place to be dealing with this on my own. I hope to get to know more ppl on here soon. I'll learn a lot more tomorrow when I see the Dr for the first time.
You are already doing a lot of good things. That's a plus. The only rx's that I use are thyroid med and bio-identical hormones. I've gotten the most help and improvement by working with doctors who treat holistically in a multi-pronged approach which includes diet, antimicrobials, herbs, immune support, detox, methylation support, emf mitigation in my environment, mold mitigation in the environment and allergy testing, heavy metal testing. I had genetic testing done and this also helped to pinpoint some problem areas in my body that could be treated.
Sounds like a lot but, collectively, this can give the body a much better chance of recovery. For me, it is like a process of elimination, or working backwards to reach pre-disease state of being.
A lot of us were diagnosed with fibromyalgia at first and spent years just wondering and not knowing what to do for it. When you are finally diagnosed with lyme disease, you might think, ok, now I just need to kill the organism, but it doesn't seem to work that way with late stage lyme. The other issues, whichever ones you may have, will need to be taken care of in a certain order, or, in some cases, simultaneously.
It's a journey for us all, and we may be at different stages, but I have gotten improvement and hope that this will continue.
I have Lyme as well, was diagnosed in 1998. I have been on at least 25 different kinds of antibiotics. I received Rocephin IV for several weeks. Please take a probiotic when taking any antibiotics to prevent yeast. I ended up with thrush mouth and C-diff. You need a probiotic to put the good bacteria into your digestive track as the antibiotics kills the good and the bad. I also had a herxheimer when I started taking antibiotics. The spirochete puts off a toxin when it is being killed by the antibiotic which made me very sick. I had no energy, my body hurt all over and I slept for days. It subsided after a couple weeks, the spirochete will go into cells and hide when on antibiotics and then would come back out and play havoc on my body again. I ended up considered failed treatment due to not being diagnosed soon enough. My back ended up with DJD, arthritis, spinal stenosis. I had 2 back surgeries and now I need another one which I have decided against. I have fibromyalgia, and neuropathy. I am a nurse and had to quit work which I loved working at the local nursing home. My husband was diagnosed with Lyme a year before me then 6 years later they said he has MS and is currently being treated for it. I wish you the best of luck with your treatment and will be praying for you and all the others with Lyme. My nephew was diagnosed with Lyme which a week later was lyme meningitis when he was a teenager. He was in childrens hospital for a few weeks and cured. He finished college and does get tired easily but other than that he does pretty well. Prayers sent your way. I do believe diet and exercise with holistic treatment is the best way to go. I have seen some very good results with this treatment.
So sorry to hear about your struggles with this horrible disease, there needs to be more awareness so ppl are getting diagnosed sooner and get started on treatment.
I take a pro biotic and have for years. Last week I changed to a more potent one, I've had a sore mouth, from the antibiotic I'm sure. Now I break open the capsules, dissolve in water and swish, it seems to help. I also eat Greek yogurt, conflicted on that, not sure that much dairy is good, but at least I'm getting more of the good " bugs ". I really hope at some point I can do this holistically, I've never taken RX's until now and I know that antibiotics aren't good for us. I bought Oregano oil caps yesterday and am going to start on Monolaurin, both supposed to help kill bacteria. I'm open to anything that's healthy and natural so if there are suggestions out there send them my way.
Someone recommended a hot 20 soak in 1 cup Epsom salts, 1 cup apple cider vinegar and 1 tblsp of ginger, supposed to help draw out the toxins. I did it once during a bad " bought " but didn't' see any difference, I suppose it should be done on a regular basis.
How are you doing now with symptoms? Does this ever go away? Do you see a Lyme specialist or an infectious disease Dr? I'm torn on what to do. I have to go out of town for a specialist. Have you watched " Under our Skin" ? I've seen it twice now, I would recommend it. I hope we can all learn from each other, I just want my life back.
I had to drive 3 hours to see a LLMD and he is the only doctor that would believe me about the fatigue and pain. All the other docs said "You are probably depressed", and wanted me to take antidepressants which I did not take. I was frustrated because I felt so bad. I do feel if you are diagnosed in the early stages that antibiotics do help. The doc said to take high doses of antibiotics then stop them the restart them. I have researched it so much I think then after the antibiotics are done if you don't feel any better then treat yourself with holistic meds. I think if you get your immune system built back up then your body can fight it better than anything as well as prayer which is most important at least for me. Try to do some yoga and meditation. Try to do some stretching exercises if you can. It is very hard I know but I didn't do this and I kept getting more out of shape and then when I would try to do just little things around my body hurt so bad, I required a lot of rest. I lost most of my friends and family because they got tired of me saying "I don't feel good", I could not attend many things and was not fun anymore. That is when you find out who your real friends are. I missed so much work that I had to quit.
I have not seen "Under our skin", I will watch it. Also be careful if you have pets that are in the house. I had a golden doodle and loved him so much but he would get ticks on him daily. He had Lyme also when we got him. He layed around and I would have him taken to the vet and he was put on pain pills and antibiotics. He got too much for me to handle because I had a hard time finding someone to take me to the doc let alone him plus he had to go to the groomer. I hated to get rid of him but now he is with a loving family that can take care of him and they have a little boy that loves him and a family .
It sounds like you are on the right track for treatment. I wish you all the best and will be praying for you. It helps to talk with others that understand more than anything, you are not alone.
You asked what kind of doctor? I have LLMD's in my area but most of them want to put you on a heavy duty iv dosing of antibiotics plus some very harsh diet plans and I hate to say this, but there are some who are just plain scam artists. Be careful of clinics that claim to cure you in a matter of weeks and charge thirty thousand dollars a pop. Not trying to scare you but these dishonest places are out there. I belong to a support group and a few of the members have gone through this type of treatment, spent all their savings and even sold their houses and have less improvement than myself. Now they are broke, and no better off than before. It's sad.
There are some good LLMD who can help you and some use herbals, but be sure to educate yourself too. Read as much as you can on lyme disease. If you have to drive far to get to a good doctor, it is worth it.
I have done much researched on my own and ask lots of questions. I see a naturopathic doctor and also an MD who treats her patients holistically. If you are interested in holistic methods of treating lyme Stephen Buhner, James Schaller,MD are two that I found helpful.
The Top 10 Lyme Disease Treatments by James Schaller,MD
Healing Lyme - Stephen Harrod Buhner
Healing Lyme Disease coinfections - Stephen Harrod Buhner
I also liked Out of the Woods by Katina Makris, who is a Homeopathic practitioner. Homeopathic medicine is another good addition to your treatment plan, but you have to find someone who is trained in it and knows what they're doing.
I know a few people who have gotten relief using acupuncture but I did not. Everyone is different. Also infrared sauna has helped several of my friends who have lyme. Anything that will help get the toxins out during treatment seems to be effective. And anything that will relax you is beneficial. Our immune systems needs a lot of help.
Have faith. With God's help and the support of a few doctors I have been able to improve and function a bit better. It's a work in progress.