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I had posted below a reply to an old thread and may have been buried so I put it out on a new thread to see if anyone had any thoughts. Some of the info below was specific to a question about my treatment asked by Ticker.

10/22/04 I found out the my rare Cutaneous T-Cell lymphoma (mycosis fungoides), although not curable, is an early stage presentation and with proper treatment and can lifetime monitoring should not be an issue.

*Still pending two white spots on MRI, and surgical consult for C5-C6 herniated disk.

Previous response to treatment question(Prior post at the bottom of this message:

I was positve twice for Lyme 5 years ago and I know the first was three weeks the second which was two months later was for ten days. The second was about 4 times stronger than the first from what I remember. I would love the name of the two doctors in PA. I'm getting close to think AETNA may start questioning my coverage since they spent of 20 grand on me last year (not including my depo and provigil prescriptions) and I'm sure I've topped that this year with two MRI's & CAT for my neck and another MRI coming up for my Brain. What I don't understand is how my doctor is dismissing everything and just sending me to someone for the affects I feel and not looking at what I know is the cause (LYME). She made me feel last week as though I shouldn't even bring up Lyme again because the latest two tests were inconclusive then negative. She even went as far as to admit that it is so difficult to go that route because the symptoms mimic other things and are hard to pinpoint but the results we negative so we should persue other avenues. My bosses all but threatened to get rid of me for my lack of punctuality lately. I'm starting to get frustrated because I know 5 years ago I had two positives the second be lower than the first, and i know that how I am is not who I am. No one can see or tell how hard it is for me daily to get through the day yet I never miss work, neglect my family, or neglect my friends and girlfriend. Maybe if I would just laid down and gave up i would've gotten more serious attention and consideration. My doctor even said she spoke to a infectious disease doctor who said who wouldn't see me unless I had a positive spinal tap, but she doesn't think it's necessary know since my test was negative and we should wait and see what the clinical neuro says about my pending brain MRI. I'm not one for making excuses but I'm starting to wonder if I even have and rights to make an excuse of Lyme with any issue because people seem to be just dismissing it since it's not killing thousands each year.

What have others done with hepling others understand what they go through? What have others experienced in their professional life? You at times feel like questioning yourself because of how you're not getting anywhere and no one seems to care. I have an uncle who has MS and he symphasizes with me because at first thought he had Lyme, and he was informed of how the two mimic each other. Maybe if I hadn't constantly dragged myself out of bed everyday and went to work and fulfilled all my other responsibilities people would see I'm not the same as them, it's not as easy to get up and get excited and going at a moments notice or going to work on 4 hours sleep.(Ironically lately I've had slight instances of insomnia to make the whole narcolepsy even more fun since my doctor recommended a full 8 hours sleep every night and a 20 minute nap every afternoon, could you imagine my bosses the day they would come in and find a cot in my office?) I'm starting to really worry about my professional evaluations going on around me at work now, do I have any rights? I'm just have more and more questions daily, and I believe my doctors lack of knowledge on the subject has now begun to affect my attitude negatively, but I'll be up and ready for work tomorrow, I may be 5 - 10 minutes late but I'll be there, and work through lunch as usual and be the last one out at the end of the day as usual.

I wish everyone the best. I symphasize for those whose experience had been worse thanm mine, and pray that those who aren't as bad never go through the regimen of hoops I've jumped through thus far.

_

I'm not sure what I have going on now. I had tested positive twice after the classic bullseye bite which over a week inflamed 3/4 of the way around my leg from the top of my thigh to my ankle. My original doctor left her practice 3 years ago to become a Professor at Duke Univerisity. She was great she worked with a doctor who had an interest in Lyme when she first became a doctor and was understanding of my problems in a sense. I wasn't looking for sympathy just and understanding that I don't have with my new doctor.

My new doctor sees me, considers my complaints and then either sends me to a specialist for what she migth think I am having problems with or gets more blood tests.(I might be running out of blood). Since I've been with her I have about 6 specialist I've seen and am seeing:
1. Ear, Nose & Throat (Adenoid gland grew blocking 60 of nasal passage, enlarged lymph node - both surgically removed 2 months ago)
2. Clinical Neuro - Brain MRI scheduled for next week
3. Urologist (testosterone level of a 70 year old, I'm 32 - 30 when diagnosed, 300 Mgs depo-testosterone injection bi-weekly)
4. Allergist (I'm allergic to Maple)
5. Sleep Specialist (I take 80o Mgs daily of Provigil for Narcolepsy)
6. Optomotrist - vision blurrs, loses focus - response is it's due to a stygmatism
7. Neuro Surgeon (surely not lyme related, C5 & C6 herniated discs)
8. Dermatologist - Three 1/4-1/2 inch pieces of skin removed to test for skin cancer, 2 from back dark freckle/mole like possibly from to much sun. But, the third on lower abdomen is a dry spot 7 months old which they say could be eczema or a type of skin cancer, I never had eczema before)

I hope I didn't leave anyone out, but if I did I'll remember in about ten minutes just like I remember half of the other things I forget, or double check on. This all falls in line with being in a fog, absent minded, fatigued, tongue tied/mumbling when talking at times, transposing numbers and letters. I'll stop there.

I've dealt with everything as it comes along but since my last visit with my primary I'm at a loss. She took 10 vials of blood two weeks ago, and says she tested for all kinds of stuff, Lupos, STD's, blah blah blah, but that the first test on Lymes was inconclusive, abd the second Western blot was negative so I no longer have Lyme. ?

I'm not sure I heard you have problems with it and kinda have it forever. I thought you could feel great and 3 years later have weird problems. I questioned her further and she explained it to be similar to when you get a flu shot, you get one but it goes away and you would have to get another flu shot a year later so i could still get Lyme but that is not my current problem in her mind.

I'm not sure what is right and wrong or what is me and what is not. I used to be a hyper active person. Now I'm lifeless most of the time? I'm thinking of changing doctors but I'm not sure where to turn.

Any advice, any doctors near Phila******a, PA?

Thank you in advance for reading this, and for any responses.





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