lyme

My first post!!  I was diagnosed with lyme disease in June and took doxy for 21 days......I went back to my doctor and she said I did not need further treatment nor did I need to go to a lyme specialist.....How do I know I am cured???  I still have leg pain and find it difficult to walk , difficulty sleeping and low enrgy level....Help please... 

Allie...Thank you for your quick responce!! My regular dr diagnosed me with arthritus two years ago...I choose not to take any medication but when I went to dr in June{my reg dr was out of town so I saw the dr covering for him) I told her my arthritus had become progressively worse and I now needed something for the pain.....She had me move my legs and arms certain ways and said she didn't think I had arthritus and preceeded to give me several different types of test.....lyme testing being one of them.....sooooooo....I may have had it for a couple of years.....

Personally, I think anyone who is dealing with Lyme disease should find an LLMD...after all of the nonsense I went through with other doctors and specialists (what a waste of time and money...not to mention what they put me through emotionally). I swear some doctors have the ability to strip patients of their common sense - if you're still feeling crumby, then something is still wrong... YOU are the only one who knows your body and what you're feeling. Don't give up getting help for your health just because a doctor tells you you're fine...that's nonsense and just way too risky.

If your car was sputtering and barely hitting 20 mph with your foot to the floor and the mechanic said "it's fine and doesn't need any more work," would you take his word? Of course not... Unfortunately there is just way too much voluntary ignorance (in my opinion) surrounding Lyme disease...and something very strange is going on with doctors not wanting to recognize it for what it is or allow patients to get proper treatment. I remember one doctor I saw who called another doctor to cancel my appointment when I went to get another opinion...just ludicrous. I actually respected the doctors so much more who were honest and said, "I just don't know what's wrong," or "I think you need to see a better doctor because I'm not sure..." rather than the doctors who judged me, dismissed me, or tried to diagnose me within their field (it's too bad more doctors didn't have the ability to, or interest in, working together, especially for systemic illness like Lyme!).

Littlehutton,

Boy, do I know how you feel! Yet these stories like yours still make me so angry... It's absolutely insane how ignorant, and sometimes just plain stupid, some of these doctors are. I remember saying so many times, "How does this person have a Ph.D.???" I mean, seriously - some of them aren't even able to count the correct number of pills for a month's worth of medication.

I don't know how in the world ANY doctor could think that any of us CHOSE to lose our health, our sanity, our jobs and homes (for many of us), and relationships...it's just mind-boggling. I had a similar encounter with a neurologist I was required to see for retirement disability income - she sent me a lengthy report that was so inaccurate and full of assumptions, I was appalled. I stayed up that entire night writing my own letter and correcting all of her mistakes. I never heard back and I'll just say - I was awarded the retirement income.

We need more people to be proactive, to be advocates, and stand up for themselves. I wanted to report this doctor to the medical board but didn't know exactly what the process was and honestly didn't have the energy or brain-power to do it at the time...and I don't know if it's too late now or not... I've found that I haven't had much choice but to let go of all the wrongdoings to me by doctors anyway...I'm so angry, but what am I going to do about it at this point - I know I'd have my health (and normal life) back had just ONE (out of 30) doctor been enlightened... I will say that I have followed up with the few doctors who "treated" me for the longest periods of time and made me feel the worst...just to let them know that SOMEONE did diagnose me and provide me with APPROPRIATE treatment. I never heard back from any of them...no apologies or even acknowledgement of their misconduct (not that I expected any more than nothing from the medical community).

Hi Gorbybell

I too am in the UK, you are so right about the 10 minute slot! Have you also noticed that doctors sometimes stand up (while you are still explaining symptoms) and basically show you the door! How rude!

Which LLMD did you see in the UK, were you diagnosed from a blood test or was it a clinical diagnosis, and how is your treatment going?

Wishing you well....



Hi Madrivergirl30

I too feel so angry at times about the treatment I have received from Doctors. Everyone you speak to seems to be in the same boat, especially where Lyme is concerned.

I too intend on writing to every doctor I have ever seen once I have been officially diagnosed, to let them know how appalled I am about their misconduct, though I would imagine I will never get any replies, but it will make me feel better at least.

One day the controversy of Lyme will come out, and gosh what a scandal it will be!

Best wishes to you

i am NOT in the UK but USA and sad but true there are doctors like that here as well. 2 weeks ago i went to my nurse practitioner (my doc was out of town) and saw her. she seemed concerned. one week later i saw her again and she said "have i seen you before?" DUH, 7 days prior. i knew right then i was in trouble. i feel like a lot of docs are "fast food" doctors. if i have the sniffles or a broken finger they will do fine but anything beyond that they have no idea what to do. if its not on the "dollar menu" meaning what most people have then they just dont have the knowledge or concern. i have had terrible "specialists" which made me feel like i too was a hypochondriac....one rheumatologist comes to mind. he literally spent more time leaving the room for phone calls than examining me. then he said nonchalantly "could be fibromyalgia. here's a pamphlet." OMG! its my health and i want/NEED more than a stinking pamphlet. he never requested a follow up or anything....i would NOT have went back to him anyway. but that was the extent of his concern. bet he would feel differently had it been his daughter or mother he was examining.

like i keep saying i havent had the dx of lyme yet. the "good" PCP i went to the other day at least does seem concerned. i am just hoping if it lyme then the blood tests will show this so i can get on with treatment.