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07/19/2008 01:09 PM

Frustrated

mandapanda
mandapanda  
Posts: 5
Member

Hi... I am new... I was looking for some people going through similar things so I could not feel so alone. In May of 2006 (typo in my info says 2005) I was diagnosed for the first time with Lyme disease. I was 16 years old and the doctors said they weren't sure how long I had had it before they found it because I didn't have the rash. After a 2 month course of doxycycline, I thought it had gone away other than a few symptoms that I was used to anyways so I thought nothing of it. In February 2007, however, the symptoms returned full force and I had to go on Doxy again. After a while, the symptoms faded again. This past January, the same thing happened only this time much worse. I could barely walk, and being in college for the first year, I was stuck in my dorm. Finally, after a month of Doxy, the medical clinic at RI hospital decided to put a picc line into my heart for rocephin... but I ended up being allergic to the medication so they removed the line the next day. I then went to the Lyme clinic at RI hospital where I was told be their doctor that there is no such thing as chronic lyme and maybe I have fibromyalgia. After a while of not being treated and being confined to my bed, the symptoms faded in May. Last month on the 25th, they returned again. This is weird because usually it only returns once a year and lasts for a few months if I get treatment and I go into a bad depression for the rest of the year. Currently, I have intense pains in my ribs, my spine, my ankles, my arms... it hurts so bad to breathe, often in different places when I inhale. I can barely turn over in bed because the pain in my ribs is so intense. I can't sit up because my spine hurts so bad. I can't text or call my friends who are worried about me because I can't really lift up my arms. My head is killing me. Two days ago I went to Urgent Care in my town, and the response I got was, "I don't know what you think we can do for you. Go somewhere where they can do something." They gave me some vicodin to help me sleep. I took some that night but woke up 2 hours later with intense pains in my chest. The next day (which was yesterday), I went to the emergency room. The doctor wouldn't even do a chest x-ray, he only repeated the blood work and said they can't do anything for me and that "it is not the emrrgency room's job to go searching for illness, it is only their responsibility to find life threatening problems." Today I can't even move. besides have this laptop on my lap. I went to the bathroom once and looked in the mirror and noticed I looked a little thinner and took my weight. I lost 3 pounds since 2 days ago. 6 pounds since Monday. I know my appetite has been weak, but I shouldn't be losing weight that fast. I am not sure what to do right now. 2 more days until the results of the blood work come back to show once again that I have Lyme, but I am allergic to everything they want to use besides Doxy and I have already built immunities to that. I guess I am just looking for some feed back, maybe some advice. I am totally in the dark here because I feel like doctors are trying to punish me for having Lyme, like they are mad at me for even going to them in pain.
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07/20/2008 07:01 AM
denise17
denise17  
Posts: 281
Member

Hello and welcome!

What a terible story! First of all where are your parents in all this are they trying to get you help? Welcome to the world of uneducated and callous Dr.s. I can't believe they are sending you away in such pain with no answers. I also can't believe there is a so called "lyme clinic" that is telling patients that there is no such thing as chronic lyme!

To me you obviously still have lyme sypmtoms and need continued treatment. PM Jamie one of our group leaders and see if she can find you a lyme literate MD in your area. You are not alone, just one of the many infected with this terrible disease and stuggling to get answers.

Good luck and take care, Denise


07/20/2008 09:16 PM
ConnieD
ConnieD  
Posts: 808
Member

Oh manda panda, Your story is making my blood pressure rise right now!!! I cannot believe a doctor at a so called 'lyme clinic' said maybe you have FM????No, no, no,no....you certainly could have FM , CAUSED by LYME....give me a break. You definitely need to find an LLMD who can treat you properly. You poor girl...in college. THese are supposed to be some fun years.

Let me assure you that you are not crazy and it is not crazy to ask for pain control while you seek proper treatment. My gosh, I lived on lorset plus and ultram for four years. That was back when my docs said I just had FM. I guess they thought it would be okay to live on pain pills for the rest of my life. I am rolling my eyes at the absurdity of these doctors who are so closed minded. Look how young you are!!!Something is obviously wrong....you were not treated properly to eradicate your Lyme disease and it keeps returning. (THat's just my very humble opinion).

Please pm Jaime. She has a list of all the LLMDs in the country. I was treated by a doctor in the South and I am recovered. I saw a biological MD who treated me with a combo of homeopathics, herbals, and nutritional sups. I also used a FIR sauna, did some zapping, saw a chiropractor and acupuncturist. I also consulted with an ND at my clinic. I am recovered and have my life back. I just want you to keep fighting for your right to get well, because you can get well. You need a lyme literate doctor.

You are definitely not alone. We are all in this together.

Peace,

Connie


07/21/2008 05:57 AM
tomro62
tomro62  
Posts: 359
Member

MandaPanda,

I checked out the Lyme Disease Clinic at Rhode Island Hospital and it is staffed by Infectious Disease Specialists, which explains why they told you there is no such thing as chronic Lyme. If you continue to go there, you will not receive the proper treatment that you need.

You are in an unfortunate position, being in college and needing what can be expensive medical treatment. I would suggest that you determine how best you can proceed. Can you attend college and have your illness treated, or is it in the best interest of your health to leave college in order to have this thing taken care of?

It sounds like your immune system has been fighting this thing off with some success, by might be slowly weakening. This is not a good course to continue on. If your immune system tanks, you are in for a long recovery period.

Take some time to think about this, consult with your family, and make the best decision for yourself.

Tom


07/21/2008 06:15 AM
ConnieD
ConnieD  
Posts: 808
Member

Good research Tomro! IDS....yes, that's why she is not getting proper treatment. So scary.

07/21/2008 06:39 AM
LKat
 
Posts: 10
Member

im so sorry about everything your going thru... its so frusterating to here continuous stories about doctors misinforming patients..some of these dr.s out there are just flat out morons. I really dont know what to tell you except find a really good, caring Lyme Litterate Doctor. I have been working for a year now trying to get my Lyme outa my system and I just cant seem to kick it. I was diagnosed the beggining of my Junior year in college, and I am now a senior. As for having Lyme in college, IT SUCKS..i totally understand where your comming from. that college life everyone lives...i never really got to bc ive been sick for years and years w.o any diagnosis. BUT PLEASE DO NOT that governemnt covers us under the Disabilities Act of 1990... go to your disabilties office at college and sign up with them. They are to give you any "reasonable accomodations" that you need. For example i have terrible joint and muscle pain and have pain walking long distances and up stairs. All of my classes have to be on the first level. Also do to my illness i have alot of absences and no teacher is allowed to lower my grade do to this..... talk to your disabilties office and get the accomodations you need.! Good luck and I hope you get the answers you need. if you need anything just ask!

07/21/2008 06:43 AM
LKat
 
Posts: 10
Member

Tom-

Is that right?? my doctors is a Interal Disease Specialist... who is LLMD. I have had great success with her so far and she certainly believes in chronic lyme and all that comes along with it??? I think im on the right track to getting better?


07/21/2008 10:03 AM
tomro62
tomro62  
Posts: 359
Member

Lkat,

Do you mean your doctor is Internal Medicine? Internal Medicine is your basic General Practitioner. Most LLMDs are Internal Medicine, although I know a few Rheumies, Pediatricians and the scattered Neurologist or two. There are some Infectious Disease docs who have broken off from their society's guidelines.

Infectious Disease doctors deal only with...well...infectious diseases, which includes Lyme disease. However....

When I first thought I might have Lyme disease, I called all around Baltimore to try and make an appointment. Not one, I repeat, not one ID doc would see me for Lyme disease. They said that unless another doctor had already diagnosed me with Lyme (with a positive blood test), they would not see me at all.

That was my introduction to the conflicts in the medical community over this disease.

Mind you, being in Baltimore, there are places such as the Johns Hopkins University and the University of Maryland; both of which are two of the most respected hospitals and research institutions in the entire world! Neither of them wanted anything to do with me.

Sad does not even begin to describe the situation when a patient in need is turned away by a physician.

Tom


07/21/2008 10:26 AM
mandapanda
mandapanda  
Posts: 5
Member

Thank you everyone Smile I am currently waiting for the test results from Friday. They said a doctor will be calling me soon but it has been a while. I will let everyone know when I get them back. Unfortunately we know what will happen if it is negative, I will have to begin everything all over again. Drives me insane. But thank you for your support. Lkat thank you for your advice with the disabilities act. I was about to take a semester off. Smile Thank you all

07/21/2008 11:05 AM
mandapanda
mandapanda  
Posts: 5
Member

My test results cam back negative. Now I really don't know what I am supposed to do. That was emotionally draining. All I ever heard after positive results was "there is nothing we can do." Now what after a negative one? Will anyone even bother to help me anymore? I'm scared.
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