I will make this as short as possible. This is my first posting...but do read posts daily for information. You guys are awesome and this site is so helpful!
I am a 32 year old, mother of 3. I was diagnosed with Lyme at the end of July after 3 years of going to every doctor possible-chasing my worst symptoms, only to be told nothing is wrong (of course with the exception of anxiety and depression - whatever). I finally now have a diagnosis, but wish it wasn't this. Although curable, it is the worst thing I can imagine feeling.
I take doxy, 400 mg a day. I feel HORRIBLE everyday of my life. I do not have good days and bad days. I pretty much have bad days EVERYDAY! My doctor says I should be having some good days on the meds (luckily I have a doctor who has Lyme as well). I do get worse every three weeks, but again have NO relief. It is hard to stay focused on staying on the meds because when I am not on them, yes I feel crappy, but I feel ULTRA crappy on them. My doc switch to Augmentin and said possibly I am having a reaction to the medication, but it was unlikely. Same issues with new meds. I am sure I have had Lyme for 3 years, if not longer... does anyone know if it is normal to feel this way?
I know I have to get better, but feel as though I am losing my kids and my husband because I cannot do the things I use to be able to do. The kids are just too young to understand how bad I feel and my husband, while helpful, just doesn't get it. Currently, I am pulsing the meds. I am taking them during the week, not on weekends so I can spend time with my kids.
Should I be tested for co-infections, or anything else at this point. Or is what I am going through "normal" for some people? Any advice or thoughts would be greatfully appreciated. Thank you!!!!
Hi Julie, sorry you are feeling so poorly. Yes it is normal to feel this way on med's. It is killing off the bacteria (s) How long have you been on treatment? Are you seeing a Lyme Literate medical Doctor? If you aren't then possibly you might think about getting to one.
I know we can all relate about family or freinds not understanding....
YES you do need to be tested for co-infections. And I would advise being tested to see if you have Epstein Barr Virus and Cytomeglovius falring up also.
[SIZE="3"][FONT="Comic Sans MS"][SIZE="2"]Hi Julie,
Your story is just so familiar. I do hope that you start feeling better. Luckily my kids are grown so they do understand whenI go to bed at 6 in the evening. Fixing dinners and having a normal life,.... a thing of the past. I have learned to live within my limits and do all the healthy things my dr. tells me to do. I have had lymes for 10 years and I know what you mean about losing friends and family... Just hang in there and take it one day at a time . Eat lots of veggis too!!!
I'm so sorry to hear of your struggles. I have small children too and I feel the same way about missing out on life w/ them. I've been an abx for 2 months straight now and the past few days I'm actually getting better.
How long have you been on antibiotics? I would say that you more than likely have a coinfection.
I took 6 weeks of doxy (grantid it was only 300mg/day) last year and it did nothing for me. I'm on a cephalasporin now and it seems to be doing the trick.
Julie, I'm sorry that you are feeling so aweful. I to know how you feel. I have been on ABX's for almost a year and feel terrible every day. I just last month was diagnosed with Babesia along with the Lyme, and because I had this co-infection I was not improving on just the Lyme treatment. I have been on Malarone for 3 weeks now, and boy I am even more sick than before. But I know that I will get better now that I am being treated for the co-infection too. You should be tested for the co-infections, but understand that with Babesia there are only 2 strains that are tested and there are at least 24 different strains, so most of the time the test result is neg, so your doc needs to make a diagnosis by symptom history. You can look up the symptoms in Dr. Burrascano's 2005 Guidelines, pages 22-23. My son also has Lyme and he felt worse on the ABX's for about the first 4 months and then he slowly started improving and he is about 85% now at almost a year of ABX's, his doctor said 6 more months, so there is hope, you just have to give it time. I know that is hard, believe me there are times when I just want to stop taking my ABX's for a while to feel better, but in the end that will cause me to be sicker longer, so please hang in there, you are not alone, and with time you will get better. Sincerely, Sarah
I am sorry you have been sick for so long. I know it is frustrating. I have not read the replies here yet, so I apologize if I repeat information.
How long have you been on Augmentin? Does your doctor know you are pulsing it?
Have you been tested for the co-infections, both types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma? This is very important. Many people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This has been true in my case.
If you were infected during any pregnancies, you should have your children evaluated by a knowledgeable doctor. Lyme disease can be passed through pregnancy and breastfeeding.
Are you aware of the Jarisch-Herxheimer Reaction (herx)? Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.
It is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.
Hang in there okay? It is normal to feel worse before feeling better. It can take time, especially when you have been infected for so long. With proper treatment, you can get better.
Thank you everyone for your thoughts and help! I do not see a LLMD or even an infectious disease doctor. My situation is a little different. I have been to soooo many doctors the last 3 years--from GP, Internal Medicine, Chiroprator, Neurologist, Optomlogist, Gastro, and Rheumy as well as 2 days in the hospital for my heart, and NOONE could find anything. Another doctor I went to asked me to explain what is going on with me--and literally midway through my story, he immediately knew what it was although he didnt tell me he was sure. He just asked me if he could test me. Figuring once again I would have a negative result, I was hesitant...but said ok since I was there. Western Blot came back negative, but CD-57 was 29 (normal score for Labcor is between 200-360). Like I said, my first symptoms started in 2004, even though I never had a rash. He immediately started me on Doxy 100 mg, 4x's per day. My doctor, wife, 4 children, and dog all have Lyme. He gave me options to go out of state to be treated, but told me that he could treat me. I wanted him. His compassion is unreal, I can get a hold of him AT ANY TIME I need to, and this is something he completely understands on a personal level. I do not live in an endemic state, yet all states bordering Ohio are. For some reason they must believe we have a secret imaginary barrier protecting Ohio. It's ridiculous that NO doctors here have any idea what this is about. I am not making excuses, but for me to travel out of state to a LLMD would be so hard right now. My husband works at least 10 hours a day, including Saturdays, and my children are in sports as well as school. I really trust my doctor...as a matter of fact Ticker, he sent me the same article by email that you suggested and told me this is the best synopisis of Lyme disease. He is very big into the rehab program and exercise, not just the medicine. I realize I have a VERY long road ahead...I just didn't know this was going to kick my b*tt as bad. I felt horrible the last 3 years...but nothing like I am on ABX. When I told him how bad I was feeling, he suggested that I take 3 days off Doxy to see if the meds were causing my headaches, though he said it was unlikely. I felt great for 2 of those days and thats when he switched me to Augmentin. I was on Doxy for 7 weeks, now Augmentin for the last 3 weeks. Even though I don't have as many side effects from the Augmentin (Doxy gave me heartburn and diahreah), I don't feel as though the Augmentin is doing the job. I am not as sick as the Doxy, but its catch 22. Isn't this what I asked for? But I am worried that its not working as well.
I just found out that my 5 year old boxer probably has Lyme or another tick bourne disease. His test was negative...but same thing when it comes to chronic Lyme with dogs. He had bad joint pain, but x-rays show nothing and doctor can tell how much pain he is in as well as depression and thryroid issues. He is now on Doxy as well. My vet says it is absolutely here. My children are 9, 5, and 2. Mostly I am worried about my 2 year old. I did breastfeed for 6 months. She appears to be asymptomatic, but I would rather do treatment now before she remembers the pain she will go through. I do have to travel out of state to treat her or possibly the Cleveland Clinic. I have just heard they are not sympathetic there. I have to convince her pediatrician to do the test for her and my 5 year old, although once again docs don't believe it his here. It is UNREAL! I am paying for it, so what does it matter?
My doctor does not know that I am pulsing, but did tell me at my last appt that it is an option. So I don't believe he would be too upset with me. I just feel I am in a "constant" herx and after 10 weeks, I would think I would have some good days in there. Not that have Lyme period, even early Lyme isn't bad...but could this mean I have it worse than I thought, or long than 3 years? I just don't understand the whole thing despite reading about it constantly. My ANA score was 1:640, could I also have an autoimmune disorder as well? That is the reason I was seeing a Rhuemy, but my doctor believes that my antibodies are working overtime and I may not have an autoimmune disorder at all.
It is ridiculous how I feel (which I know this is how everyone feels). I am by no means suicidal...but some days I go to bed hoping I will not wake in the morning.
Again, thank you everyone for your thoughts and advice...I have learned so much info just reading posts on this website and it is a godsend! It was just finally time for me to post my own. Thank you all!
I am new to this board and am so happy to find info on lyme disease. A friend of my son (30yrs) is dealing with something that sounds very much like lyme disease. My niece, in Baltimore, has had lyme twice and this friend of my son has symptoms that are exactly the same. She has been to a well know hospital ER several times, here in Cleveland, to no avail. They tested her for lyme and the results were negative, which I know happens often. They have simply told her they don't know what is wrong and send her home. She has shortness of breath, joint pain, is lethargic, and is now having numbness in her face. She is an outdoorsy person so the reality of a tick bite is not out of the question for her.
Can anyone recommend a doctor in the greater Cleveland area? This young woman does not have any family in the area and although I have never met her I did speak with her on the phone and would love to help her in trying to find the root cause of her problems so she can get treatment.
Any help you can give me would be so appreciated.
It is nice of you to help this woman. Please read my above post.
I do not know of any Lyme doctors in OH. There is one in Hermitage, PA who comes highly recommended: Dr. Chandra Swami. You may want to check out Lyme support groups in OH to see if they can recommend someone.
I am so glad that your reg. doctor is treating you for lyme, that is soooo wonderful! Finally, a doctor that has researched lyme dis. and UNDERSTANDS! We need more doctors like yours! You are lucky. I don't blame you for wanting to stay with this doctor, he sounds like he is treating you aggressively enough, and it is so important to have that good, trusting, comfortable feeling with your doctor. THAT is hard to find. Good luck to you, I hope you feel better soon!
Thank you for your reply. You seem very versed on the subject of lyme disease. I did some checking on drs closest to my area and already found the one you mentioned, Dr. Chandra Swami. Listed along with Dr. Swami in Hermitage, PA is Dr. Joseph Joseph, although the phone number is different.
My niece is seeing Dr. Kenneth Singleton in Towson, MD. She was very lucky to find someone so close to home. Lyme and the co-infections are so difficult to get under control.
Can you share the name of the doctor treating you? Is this person actually in Cleveland?
Carol...sorry for your friend. Ohio is a bad place to have lyme because there aren't any doctors here. Not only that, they don't even consider it and/or are not educated on it due to the fact that its not an endemic state. Like I said before, I went through 3 years of just about every doctor you could go to, just chasing symptoms that didn't make sense, and not one doctor put it together.
I am not in the Cleveland area. I am in Columbus. I wouldn't feel comfortable giving my doctors name unless I talked to him first, since he is not a LLMD. At my next appt, I will ask him if he minds.