I need help. I have questions :(

hi, I was diagnosed with ebv back in september, I had muscle aches, fatigue, chills, tremors and lots of other symptoms, I seen lots of drs until I found an internal medicine dr who did a lot of different test, I went back to get the results yesterday and she said I have lyme disease. Im on dox twice a day. my question is, am I in the late stage of lyme? my symptoms started late august? if so, Can I still get better with the meds dr prescribed? and she said that maybe onces the lyme is under control the ebv can go back to dormant. Im confused,. I have never imagine having lyme disease. I feel better knowing what is wrong with me, but Im scared it might be too late to fix it.I have been reading online that if you get diagnosed in the late stage of lyme you can have it forever. Im a female 31yo, very healthy before this stole my peace and part of my life :( thanks in advance :)

hi. thanks for the reply. I started feeling ill late august. it was fatigue, chills, muscle pain, low fevers and just not feeling well,like the flu.. two weeks after that the chills stopped, I only had muscle pain and this horrible neck pain, and the worst part for me it was the brain fog, and the feeling of going crazy at some point. I saw many many doctors, even one basicly said it was all in my head and that she belived I was depressed and that it was ebv and it would go away, that I needed to "put in my head" that I was fine. by mid sept I was still feeling ill, just not my self, joint pain, and I even developed a red line, like a rash, but a line from my shoulder to my elbow, in the inside part of my arm, that went away in a couple a days just leaving like a bruised trail in my arm. when I told the dr about it she said it was because I shaved my underarm??? lol.. after that I never when back to see her. so I found dr salvato here in houston and made an app, but I didnt have luck and the only available was dec 20th. So finally, after months of being sick, I went to see her dec 20th, and jan 9 went to get my results and she said I have Lyme. wow. I seriously feel like this is a nightmare. how come this lyme disease took over my life??? I mean, its not the physical part, the pains and stuff, its the feeling of "im crazy" that hurts the most. the feeling of having your family and friends thinking that maybe you are depressed, and sometimes not having control over my emotions and oh, I cried, I cried my self to sleep many nights.and recently I starting having bad chest pains, I thought I was having a heart attack, its so scary :( I just want to belive that doxy can do it for me. Im actually waititng for the dr office to open so i can call and see if I can come by cause I have lots of questions, because the day I was dx jan 9th, all I did was cry when she told me I had lyme.so I didnt ask any questions, I didnt even know this was a chronic condition. my questions are 1. if I was dx in the late stage of LD, can I still get fully recover? 2. if doxy 100 mg twice a day for 6 wks is good enough for late stage of LD or should we try anx shots instead? 3. if I being so long with all this symptoms, and the brain fog, mood swings, tremors, should we get a test for my brain? just to make sure the L is not in my brain, or I dont know what medical terms they can use for this question lol. 4. can people with LD relapse? and 5. if theres any other meds or treatment I can do together with doxy just to make sure that horrible disease is gone. Im a mother of two kids, one 7yo and one 4yo. they are my whole world, and I want to do whatever is in my power to get COMPLETLY healthy for them, and for myself, they need me and I need to get better so I can be the person I was before the horrible thing took over me.

Iwantmylifeback,

I will answer your questions to the best of my ability. I am not a doctor, nor have I seen you. This is my opinion based on what you have told me about your condition, the research I have done, the stories from others and my own personal experience of lyme as well as my daughters.

1. If diagnosed in the later stage of lyme, you can recover. It isn't easy, and you must remain disciplined to your meds, body, and diet.

2. 6 wks of doxy for the late stage of Lyme will NOT rid you of it. My opinion is that it would take a minimun of 8 months, on several different meds. I am assumig the shot you are talking about is the PICC line. It is an IV that is placed (usually into the arm) and run into your chest where it delivers antibiotics to your heart or near it. (sorry, cant exactly remember). There are a LOT of side effects, including gall bladder failure. My LLMD tells me that the risk can be as high as 35%. He says many people end up in the emergency room at 2 am with emergency surgery removing their gall bladder. There is a test you can take to measure the effectiveness of our bladder. Mine did poorly, so I never did the PICC line. There are many other side effects as well.

3. Test for your brain - not neccessary. It's your symptoms that will tell you if you have neuro lyme, and from your "brain fog, mood swings," I would have to say it is in your brain, which means you need medications that will cross the blood brain barrier. - Doxy will not do so. There are a few, I am not sure of all. I know some are Tindamax, Plaquenil, Biaxin, and azithromycin. I am not sure if Mepron does as well - I know that is to help Babesia, but my LLMD said that he has seen studies where Mepron his the lyme in the brain and in cyst form as well.

4. People with lyme disease can relapse, and there are man reasons for that. Some great people in this forum actually put together a page as to why people do not heal from lyme, pointing out some of the reasons. Some big ones are beicause the lyme was never fully treated, co-infections (if you have other ick infections, which 80% of people do, you cannot get rid of the lyme without treating the other infection. You will NOT get better). Other reasons are poor removal of toxins. Lyme disease releases toxins when it dies. The die off in your body is painful, and you will feel like you are getting worse before you get better (usually much worse). Some people find themselves bedridden. Don't push your body and make sure you are drinking water and removing toxins. My body couldn't remove toxins well and I went into sepsis. All my organs started shutting down and I was in the hospital.

5. There are a lot of other meds that you can take for Lyme, but everyone is different and everyone's lyme is different, thats why it is so hard to cure, because it bears a different face for every person. Healing lyme disease, especially in the later stages takes an experienced doctor - an LLMD. I am sorry to say, that I have yet to meet a GP that knew well enough like an LLMD. An LLMD will be able to prescribe you different meds and herbs that will help you best recover. If you never believed in herbs before, you will after this. They are tremendous in the recovery of lyme. Some people do just herbs. (I have always combined the two for myself an my daughter).

I don't mean to frighten you, because the key is to remain positive, even though it is a trying ordeal. Find yourself a good support group, it is a great help when you are having those days that you can't wait till dawn comes again. And breathe.. Your body needs time to heal. Don't rush it. You have had lyme for while, and it may have developed into a later stage, but there are people on this forum who have had it undiagnosed for over 40 years! God bless them. And they are healing. I had in for 22 before I was diagnosed, my daughter was born with it and dignosed at 14 (she will be 17 in a few days) and her lyme should be a success story in 2013.

Best advice anyone will give you - get an LLMD!

Samantha

First off, you are very fortunate that your doctor tested for lyme disease and that it was positive. Many times, the blood tests give false negatives. It is very possible for you to heal with time and effective treatment. Many people with Lyme Disease go YEARS without being properly diagnosed and still recover.

As far as whether or not you can ever actually get rid of the infection, that's controversial. Some Drs. say yes, others say that you never actually eliminate all of the bacteria, but can get it into remission where you are symptom free and your immune system can handle the infection on its own. Either way, you can lead a normal, healthy life.

As others suggested, you need to find a LLMD. LLMDs know how to treat lyme effectively and know how to treat lyme co-infections using abx., herbals, detoxification, and supplements. Most LLMDs use a combination of those treatments.

As far as Doxy goes, 200mg/day is not enough. That will keep the bacteria from replicating, but will not kill it. 400mg is recommended for killing it. In addition, most LLMDs combine Doxy w/ other abx. because there are different forms of bacteria. For example, lyme goes into a cyst form to try to hide from doxy. and different abx. are needed to break up and kill those cysts. That's just an example. Like I said, it's difficult to treat so you need a good LLMD.

For now, focus on finding a LLMD and take one day at a time! Looking ahead can be scary with this illness. The symptoms can be very severe and really make you feel like you're dying, I know I have!!!!

It's good that you have your children to keep you fighting! I have 2 children also and thank God for them. Although it's hard to not be able to be the active stay at home mom that I once was, they are great kids and are really happy and thriving. In some ways, my illness has helped them to be compassionate, open to asking others for help, used to having a lot of people around (because I've had to hire help), etc.

You will get through this. Research and learn about it, but don't let that info. scare you! Stay strong for your precious children and remember that they will be fine. Ask for help when you need and allow people to help too.

You can go on! Just think of your wonderful family. You can do this for them and to get your health back.

Most of us had experiences with Drs. like you describe. I went through a year of seeing over 30 drs., most of which were rude and dismissive and told me that it was psychiatric illness. That's a very common story for most of us with Lyme Disease. I am still trying to get over my anger about the way that a couple of Drs. treated me. It's definitely a process. I do plan to write to them and file complaints WHEN I am better. But for now, I want to focus on healing.

I'm not sure if you've read about the controversy over Lyme. Some drs. basically don't even believe that it exists. There are also 2 standards of care-the IDSA (Infectious Disease/CDC) says that 30 days of doxy is sufficient and any symptoms that exist beyond that are just "post lyme" syndrome. LLMDs follow ILADS guidelines which basically says that long-term abx. are needed until symptoms are gone. I'm not sure what type of Dr. you are seeing, but if she is a PCP or infectious disease dr., she will not know how to treat this infection and will, more than likely, give you 30 days of doxy at 200mg. and send you on your way. I don't want to worry you, but just want you to be prepared for that.

Have you read the "New to Lyme" thread on here? There is a lot of good info. on it about Lyme Disease, detoxing, and finding a LLMD.

Starting with some basic detoxing will help you feel better also. When lyme bacteria dies, it releases toxins into the body which increases symptoms. This is knows as "herxing". Epsom salt, hydrogen peroxide baths and tons of water w/ lemon are good ways to start. Just take it slow because detoxing can actually cause some die-off.

Also, you may be very emotional right now too due to the disease process. Lyme disease does cause psychiatric problems including depression, anxiety, rage. It helps me to realize this so I know that when I'm not myself that it's because of the disease.

What state do you live in? If you post a new topic asking for a LLMD recommendation in your state, people on her might be able to provide a recommendation for a LLMD. It may require travel and many LLMDs are out-of-network for insurance, but it's worth it!

And it's OK to vent!!! We all do our share of venting on here. It's hard for others to understand this disease and frustration over the lack of good treatment. You've come to the right place! Stay strong! You will get through this and get better!

Hi there, I think most of us girls have worst symptoms around our times of the month, as for the grass thing, I have been dreading spring. I really thought about it yesterday, and decided, I will spray my kids, but we will not remain indoors all summer. I enjoy flowers, and plants to much to miss it all. I love to get a good book and read outside in the evening.

I am not sure where I got the Lyme either, I also have ebstein barr, and herpes 1 & 2, it all started with the Lyme.

That being said I will go outside, and enjoy the weather, I will be a little smarter now , and try to make sure we don't get bit my anything, I do believe a mosquito is what gave me my lyme, I never got bit by anything else, that I can recall.

Lyme, and what is does to us is horrible enough , I am refusing to let it take away the little joys I have left, like stopping to smell the flowers in the spring. :)

justme

I understand, it's pretty horrible to deal with Lyme. I am with you on that, It's almost like walking around in the dark, that is how I feel about Lyme.

I just keep trying to keep fighting to get through this. I hope you will as well.

justme

Hope2B, you win by not giving in and healing despite the lack of help from those docs!!!

about the other discussion about female issues - I believe it was Lyme that I had to have a hysterectomy, as it makes things go haywire. My Mom had the same issues as I did, but not until later in life.

Before that though, my periods were always miserable!! Pain, bloating, nasty mood, nauseous - ick! In that respect I'm glad to be done with it.