I have lymes disease

[Winchester Farms]

I just found out I have lymes monday. My doctor started my on 3 weeks of doxycycline, and I guess we'll go from there. Does anyone else here have it or can shed some light on what to expect? Thank you very much.

 

[Joyce]

My husband and I have both had Lyme and we are doing fine. Just follow your Doctor's orders and we took the same meds. It will all work out so don't worry too much.

Joyce

 

[Boinky]

Depends on how far along it is. I've been battling chronic lyme for almost 10 years now. it's not at all a fun disease if it's chronice. if it's gone into chronic phases you probably are going to have a rough time of it. if you just came down wit it your chances are very good that it will clear up with the course of doxy.

 

[Pepipony]

I went 17 years misdiagnosed and once dxed, I then had to do 4 straight years of numerous antibiotics. If caught early the CDC states that a person may need up to 6 weeks of Doxy. THis will probably be contrary to what your Dr states, and I know it sounds nuts if I didnt live it , I wouldnt believe it. But there are 2 schools of thought concerning Lyme. One, is that its easy to treat and no further problems arise, the other is that it can be very hard to treat, may take months of antibiotics and even then may pose problems months down the line after symptoms left.

Go to Lymenet.org and read about this disease. Many people get it and then have no ill effects, like my hubby. But there are people who can go on to have problems even after the normals course of Doxy. Bad thing is most Drs follow that first line of thinking and push the idea of Lyme aside to the detriment of the patient.

How were you diagnosed? Was it by test, by symptoms or by bite? Were you tested for any co-infections? Like Babesia or Ehrlichia? If a person has one of them as well, I think that is when problems can arise. Best info I can give is to educate yourself. Lyme is the only disease ( I can think of) where you can have a positive test or show active symptoms, and the Dr still wont treat. Take care, Heather

 

[mininik]

One of my clients has a daughter with chronic lymes disease and they are forever working with their doctors here, or flying off somewhere to see a specialist. The daughter can't do much, she's very fatigued and in pain a lot of the time. I hope you heal quickly and don't have to go through what she does.

 

[Boinky]

yep your right heather! never understood why doctors are so set against believing it exists. I know in maine the vets are believing it and seeing HUGE numbers of animals with it... why is it so hard to believe i wonder!?? I think though that the arise in awareness is a GOOD thing. I don't want anyone to have it but the arise in dianosis is also good for those of us that have battled the system to get treated. the more that have it the more research and studies and cures hopefully will be found!

 

[Winchester Farms]

I went to the doctors because I am constantly tired and my throat was hurting. I went there figuring I had mono again. I never found a tick on me or found that bulls-eye rash. The doctor tested me for mono, lymes, thyriod and anemia, because he said those could make me feel tired like I do. They all came back negatvie exept for lymes. I was pretty surprised, because like i said, I never had the rash. He then told me he talked to infectious control doctor who told him, if I wwere his patient, he wouldnt even treat me??? My doctor decided to put me on the doxy, and is not trying to tell me my constant tiredness is from depression???!!!!!

I am NOT depressed!!! This is frusterating to say the least. I'm hoping this Doxy is the miracle cure.

 

[Pepipony]

Ok, so you are already seeing the 2 sides to treatment. Then you surely do need to go to Lymenet.org and research this. There are Drs that buck the system and treat Lymies as they need to be, and usually do their own problems with insurance etc. They are called LLMDs , or Lyme Literate Drs.

How do you feel now? For most, people will see improvement while on abx ( antibiotics) but can backslide once off. I am just the opposite, I feel 'fine' (fatigued, sore etc) but get really bad on abx, most likely because I went so long with no dx and now I have an overload. Also, some people may have a Herx , or Jerrisch Herxheimer reaction to abx, it basically looks and feels like an allergic reaction. So much so that Drs then tell them they are allergic to that med.

If you were my sister I would make you see, if even for only one visit, a LLMD. For this disease you need to be your own advocate, so much so that you learn more than your Dr knows. Guess your throat was hurting because your Lymph nodes are swollen?

Good luck!! Holler if you need more info rod@glade.net

 

[Indian*R*A*I*N*Dance]

They just put me one lyme meds for 3 weeks b/c they thought i had it but i didn't. I didn't have any symptoms. I had to take it with apple sause since i can't swallow pills. Yuck, it was so gross. Im now sick of apple sause.

After reading I went through the EXACT thing over the summer. I too never found a bite but that doesn't mean anything. They tested me for mono, being enemic, lyme ets. Just because the test for lyme came back neg it also doesn't mean anything.

Ill PM you, your doctor could be right about depression, you mey not feel depressed but deep down you could be.

 

[Pepipony]

Lyme is a funny bacterium, it is a cousin to Syphilis (both are spirochetes). It doesnt live in the blood , so testing can be iffy. If the bite is recent enough, finding antibodies can be iffy. People can get bitten, have the immune system high enough so the bug will literally shed DNA and go into cyst form, still there, but untestable and no symptoms. Then later on, the person gets sick, or has a big stress, the cyst will reform and the Lyme infection begins. My Dr explained this as an underwater volcano, its there, building and growing mass but you dont know it untill it breaks surface. By the time it causes symptoms and you actually get a diagnosis, it can be a mile high.

 

[Boinky]

yes i agree... you definatly need to be your own advocate and PUSH for appropriate treatment.

I'm one of those that feel worse on meds most of the time.. i'm on again off again becausei feel so miserable on them but then i get so bad that i feel miserable off them so it's catch 22 for me! i get regular herx's when i'm on the meds too. Anitibiotics do very weird things to you... buti will tell you that many lyme patients will get significantly worse when starting a antibiotic before they get better. I was on very high doses of Rocephin and Zithromax 2X per day IV for the whole first year... that really wasn't so much fun but i think that made the most improvement for me.. i've since been off and on oral antibiotics ever since and feel like they just don't seem to do as good of a job. I've been thinking about pushing to see if i can't get back onto IV's for another year or two and see what happens but my previous lyme specialist i saw before leaving maine didn't believe in them so wasn't really an option through him. I'm not looking for a new one here in the midwest anyone around here know of anyone?? oneof my old doctors in maine said Ed masters in Cape Girardeaux MO was very good...thought i'd look into him....anyone??

 

[Winchester Farms]

yes - anyone know any doctors around maryland??? did you guys wait to see a specialist until your primary doctor told you to, or did you take it upon yourself? it seems like the specialists around here wont see you unless you have a referal. so it's a mess.

For this disease you need to be your own advocate, so much so that you learn more than your Dr knows. Guess your throat was hurting because your Lymph nodes are swollen?

i dont think they were swollen, he didnt say anything about them. my tonsils had white dots on them, but i wasnt strep positive. i dont think the dots are there anymore. but im starting to feel like a hypcondriac. anyone else feel that way?

 

[Pepipony]

Like a hypochondriac?? Heck yeah!!! I started with some joint pain, that went away. Then cardiac issues that were so transient, Drs could never see it. Then fatigue and finally into such memory problems I couldnt recall how to ask a horse for a lead, let alone remember a reining pattern. I had odd rashes, sleep the instant I got still on and on. I had been told I need to see a counselor, that I needed some meds for my 'mental status' and that list goes on.

If you go to Lymenet.org some where on there they list Drs that actively treat Lyme. The Dr that finally diagnosed me started me on IV Rocephin and told me I needed a specialist. That she knew the listed treatment was correct. I called the Lyme Disease Foundation ( forgot about that place, I think they have a website) and got my LLMDs name/number. I truly beleive if i wasnt diagnosed when I was, I wouldnt be here, my heart had gotten quite bad. However, after treatment, poofdie, no more arrythmias!!

 

[Boinky]

ohh yeah.. i've had mental issues where i was having panick attacks. i'd wake up and not know what time it was. I'd see the alarm clock said 1:00 and think it was 1:00pm and i was late for class. I'd be throwing on cloths..it would never occur to me to look outside and see that it was still dark out.

I was having problems with very vivid realistic dreams. Say i was talking to someone and i'd never know if it was real or not when I actually saw that person.

I started sleep walking. I'd wake up fully dressed in a whole different wardrobe than i went to bed in. I'd remember dreaming about getting dressed but no knowlege of getting up and going into my closet and digging in there to find things.

I was loosing things and calling up my mom crying because I couldn't find them (like my purse or my keys) and i was so frustrated and emotional about it.

I would either sleep for days...or be awake for days.

I was having a lot of sensitivity to light and noises. I could hear every little electronic thing in my house humming r squeeling.

I started having frequent cases of shingles. They have progressively gotten worse started out maybe once every year r other year and are now up to like 3-4 times per year now (poor imune system doesn't help that at all).

Of course a lot of joint pain and it started in the joints that already had issues.

I was woring 40-50 hours at a stable one summer and I was so exhausted i wouldn't eat. i'd just go home fall into bed..sleep until 6:00 when i'd have to get up and go back to work. I gained a ton of weight too.

my mom had been to several lyme clinics given by a local doctor who had it herself. She has become VERY lyme literate. My mom had worked with her before she got sick and had to stop being a doctor (my moms a nurse). Mom kept telling me she felt i probablyhad it and i laughed it off and told her she was crazy. i was just working so hard of course i was going to be tired. She called in a few favors and had me checked by this doctor (she was still helpin a limited number of lym patients). I was very lucky to have her help and her superior knowlege and treatment. Unfortunatly her lyme flaired up really bad again and she had to stop treating the few patients she was still helping. I can still call her when i need help or advice on things though. I love her dearly.

Adequate diagnosis, treatment ect are all important to treating this disease sucessfully (or at least managing it).