LYME DISEASE - Lyme Disease Message Board

lyme7yrs · 10-18-2003, 08:32 PM

I have been sick for 7 years now.I suffered from severe fatigue,brain fog,insomnia,dizzyness,muscle weakness,low grade fevers,palpatations,shortness of breath,headaches,muscle swelling in my legs,swollen glands, back pain and stiffness.I was told it was depression and anxiety. Then about 2 yrs. after getting sick I was diganosed with chronic fatigue syndrome/fibromyalgia. Finally,a little over a year ago I saw a doctor who tested me for lyme disease using IgneX lab. My Western Blot was very positive, meeting CDC critera. Then I moved from Missouri to Florida away from this doctor unfortunatly. After a few months I found an ifectious disease doctor who worked with lyme a lot. He treated me with 5 weeks Rocephin and I Had no results. I had been on Flagyl prior to that for about a month,and have tried Zithromax and Plaqunil for several weeks. Since I continued to get worse and have no insurance my doctor droped me. I cannot find another lyme literate doctor in the Tampa Bay area. What I really don't understand is why I have gotten dramaticaly worse over the past year since receiving treatment. I can barely stand at all now because my legs get so swollen and tight and weak, and my head goes numb on a daily basis. My eyes have been irritated and red with white string like discharge in them, and now my eyelashes have grown downward and sideways,and always seem infected. I am considering suicide daily now. Can anyone tell me if they have had any similar experiences and why I haven't responded to treatment at all? Also does anyone know of a good doctor in the Tampa Bay area? Sorry this is so long, but I have no one to talk to and am going crazy!

ticker · 10-19-2003, 07:21 AM

lyme7yrs, I am sorry you have been through so much. It can take time to recover from Lyme, especially if you have been sick for awhile. It is normal to feel worse before feeling better. Five weeks of Rocephin is not really long enough treatment to see if it is working. It does not sound like you were on any protocol long enough to see if it was working.

Have you been tested for the co-infections that ticks can transmit--Babesiosis, Ehrlichiosis HME & HGE, and Bartonella? Many people who have Lyme are co-infected. To me, some of your symptoms sound like Babesiosis. Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. Did you see Dr. M.C. in Florida?

Believe me, you are not crazy. Tickborne illnesses affect multiple systems of the body and can be devastating. Please speak to someone about your suicidal feelings. It can be very difficult to cope with chronic illness and hard for those who are not going through it to understand.

Remember that you are not alone, and there is good help available.

[This message has been edited by ticker (edited 10-19-2003).]

LemonLyme · 10-19-2003, 07:33 AM

God bless you. There's got to be someone that can help you, keep looking. Sorry, I can't help with that, I'm from CT. There must be a reason for your health problems, just have to figure it out, learn whatever you can on your own too.

lyme7yrs · 10-19-2003, 02:22 PM

Ticker, thank you for your reply. Dr. M.C. was the doctor that treated me with Rocephin, and decided that if I wasn't responding after five weeks it wasn't going to help. Immediately after stopping it I found out I had two small gallstones from the therapy. I was scheduled to be tested for co-infections, but Dr. M.C. dumped me before I could. I now have found out that he was dumping his self pay patients. I have called all local referral services for infectious disease doctors names, and they all say they either don,t treat it, or I go to see them and they have no real experience treating it and don't believe in chronic lyme disease. I didn't list all of my symptoms last night, but I basicaly have every symptom on the list, plus a few more. My hair has been falling out for the entire seven years I have been sick. I am only 27 years old and am confined to the house and look horrible these days. I am in a very bad relationship because I have no where else to go and obviously have no income or insurance. My family in Missouri tries to ignore that I exsist and have never taken my illness seriously. So they offer no emotional or financial support. I am trying to apply for social security, disabiliy but they want to count my boyfriends income since I live with him and his income will be to much to qualify. How are most lyme patients paying for their treatment? Do you have any advice or know of any other doctors in the area? Also, do you know a good med. for sleep for lymies? Thanks, for listening.

ticker · 10-19-2003, 03:28 PM

lyme7years, I am shocked that this doctor dropped you as a patient. I am also very sorry to hear that you have little support.

Regarding Social Security Disability, your boyfriend's income should have nothing to do with your case. I suggest hiring an attorney. They usually only get paid if you win. It is almost automatic to be turned down twice (at least without an attorney), so don't get discouraged. The process can be time consuming.

Often, infectious disease doctors are not the best to see regarding Lyme. I do not know of any other Lyme doctor in Tampa. Maybe your Lyme doctor in MO could consult with a doctor there who would be willing. I suggest calling his office and explaining your situation.

Unfortunately, I don't know of a good sleeping med. Hang in there okay?