Diagnosed with Lyme After 10 years

Hi, I have not been on Medhelp in over a year. I have been hurting now for 10 years. I have been to Doctor after Doctor. I have had some unpleasant experiences with Doctors. I also have Pa State insurance so you don't get the best care out there. What I thought I had before diagnosed was Arthritis, Bipolar, Degenerative Disk Disease, Severe PID, Thyroid Problems. I was diagnosed last Monday with Lyme Disease. I went to my new family Dr. for 2nd time. The first time I went for abdomen pain. He told me I had a retroverted uterus that was too large and on my spine. I needed a hysterectomy. So I was going back to ask questions to make sure i could not concieve (conceive) before making that decision. I was also going to discuss my ongoing battle with constant pain. Dr. walked in and came up to me and asked how I was. I crumbled. I said i am so tired of hurting everyday, I just want to know if I am going to be like this forever and what is wrong. The Dr. sat down next to me put his arm around me and squezzed. He said are you ready? You have Lyme disease and tested positive for 2 out of 3 tests. He said most people that test positive only test positive for one. He went over a couple things and told me i needed 2 tests but my insurance didn't cover it. He prescribed Doxcline 2x daily for 2 weeks then 3 day. Dr wanted me to come back in a month. I also discussed that my pain medicine has not been changed in 3 years and it does not help as much. He told me to stay on the same for now. I leave releved to know what is wrong but anxious to get on the computer to learn about this disease.
Wow I got my fill that night-
I usually have insomnia and no energy- for the next 4 days i could not stay awake- nor did I have my Adderall (adderrall) i have been taking.
I had to go pick up my medication from my Rheumatologist today. My boyfriend called her Fri and told her i had Lyme she was suppose to call me back and never did. Anyway I go to her wanting to talk to her about switching my meds. She was too busy. The receptionist called my pharmacy i guess to check dates or something and said there is a problem- Oxycodone 4 x day=120 I said I take 1 1/2 pills 4 times daily(nothing new) The Dr was sitting next to receptionist and she decided 180 a month was too much and she cut my med to 120. I tried to explain i needed to switch it wasnt working the same but there was a room full of people and i am not a people person at all. This is Bull. She also told me I need to go to a Infectious Disease Dr.
I am so confused I know this disease has spread to my brain and spinal cord. I am scared i had this when pregnant with my 10 year old daughter. I know I probably need Iv medication to get to my brain and I know my insurance wont cover it. I am tired of being in so much pain please any advice would be appreciated.
Lesnbek

[JackieCalifornia]

So sorry to hear what you've been through -- but perhaps you are now moving in the right direction.

Don't give up -- and know that many MDs don't "believe" in Lyme disease and think anyone diagnosed with Lyme is just faking either for psychological reasons or perhaps to get pain killers.  I don't know why your MD is cutting your pain meds, but I'm sure she is not trying to be mean.  I have run into many MDs who have that same attitude, that I am being taken for a ride by my Lyme doctor and I really don't have Lyme.

Rheumatologists in particular are not inclined to 'believe' in Lyme disease as anything serious or long-lasting.  Infectious disease MDs (IDs) are almost as bad.  I've been to both, and they had zero interest in my problems.

I would suggest that you talk to your Lyme MD about writing a prescription for your painkillers, which I very much hope you will find you need less as treatment for the Lyme takes hold.

You can also take your daughter to the Lyme MD for testing.  Don't worry, tho, I have a good friend who was pregnant when she had Lyme, and her now-grown-up child is fine.

Your Lyme MD sounds like a kind and compassionate person.  My Lyme MD insists that his patients have a 'regular' doctor because the Lyme MD is too busy to be called about everything related to my health but not related to Lyme.  Welllll, everything wrong with me has to do with Lyme, but I take his point.  So maybe at some point your Lyme MD will have a recommendation for a regular/GP/internist for you to start seeing for non-Lyme issues, if he doesn't have enough time himself.

You may not need IV meds -- many people don't and are treated, even after long infection, with pills.  The first step in getting well is knowing what you have -- and you seem to be there.  I know it's scary, but better to know what you're facing.

I'm not a doctor or medically trained, so this is just my personal take based on what you said above.  I would call my Lyme MD tomorrow first thing and try to get the meds situation straightened out either through him, or if he can recommend a regular MD for you to see who would understand and appreciate what a Lyme patient is dealing with.

Take care, and let us know how you are doing.

[patsy10]

Where were the lab tests done?  Was it a speciality lab or a standard lab?  If your tests are positive then your insurance should cover treatment.

If you have had lyme for 10 years 2 weeks of treatment would be very unlikely to cure it.  Long-standing lyme often takes months of treatment to improve.

[lesnbek]

The tests where done by my family dr. My mom said she thinks he has Lyme. He did a blood test and got 2 positive results back. I don't even remember what he said they where. I was relieved for a minute because i thought finally i wouldnt have to deal with Dr's not believing me anymore. This is **** i am going to move to Canada or somewhere.

[patsy10]

Lyme is is Canada too.

[mrs_k75]

I am so sorry to hear about your long struggle with this illness. I was first bitten by a Lyme tick 20 years ago and I ahve had many problems for the last 10 years. I too was diagnosed with arthritis. RA, Degenerative Disk Disease, possible MS.

I agree that sometimes you have to see a regular MD for other problems eventhoguh many of them are Lyme related. At the same time though, Lyme does take a long time to treat. I am going into another round of antibiotics for 3 months for my Lymes. I just completed 2 months.

[lesnbek]

I dont have a Lyme Doctor my regular family Dr is who diagnosed me. I was referring to Canada because Health Care is Free for Canadians or half of cost for Medical Tourists. Here if you dont have money and good insurance you are not gonna get iv medication u need for lyme. Today i am fully rested, and actually feel ok. I have to try and find a Lyme literate doctor. I have found many Infectious Disease Doctors in my area but am confused as if i have to have lyme literate or what. Do i ask that when i call

[munchkin12832]

I am 16 and have had Lymes Disease for two years now.. I still go threw the pain and have to deal with every day.. My doctors name is Dr. Charles L. Crist.. He is in MO. He is very good and listens the first time i went in there i was there for two hours talking to him. People from all over come to him and he tries many different things to help you. I would call him 573-443-4044. He does not take insurance but you can get referrals and things to send to your insurance.  

[carrie235]

Wow!  I'm so glad you finally have a dx!  How good does that feel??!!!!!  I went a year with issues and that took a heavy toll on my mental status not to mention on my family.  I can't imagine living with the pain you have for 10 yars  I'm so happy for you!

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