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1st appointment what a wast of my time

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Posted 5/5/2009 10:48 AM (GMT -7)
 well i just got home from my 1st appointment with a ID LLMD, who said i show ImG for someone who was just bit(witch i havent been bit in yrs that i know of) and my IgG doesnt show up for someone who was bit yrs ago.

wants me to go to a nero to see if i have MS. seems i'm on the runaround train  now. i've been to 5 so called specailest in the last yr and getting nowhere fast. just in the last month i have 1 finger that is numb all the time, and just this week i almost passed out for  no reson and now the feeling of virtgo, witch i have never had b4. can this be lymes or MS? i dont know but looks  to me if i want the right answers i need to get my  PHD.

lord i am just so mad i could spit tacks grrrrrrrrr sorry i'm venting here but  i dont knwo what else to do now. i just want to be able to walk and be pain free  again.

  RD

Posted 5/5/2009 1:04 PM (GMT -7)
You must be your own advocate. I didn't like the first guy I went to either and not thrilled with second guy but will give him more of a chance. I am convinced part of the problem is finding someone who genuinely cares. They may know their medicine but I am convinced they dont' give you enough time to figure things out cause they have to see the other 100 patients a day so they can make their big bucks. Its a terrible way to feel but its only after 3 years of doctors smiling and telling me I was fine it was just menopause and I should count my blessings. Don't give in or give up. You have the right to be mad.
Posted 5/5/2009 1:14 PM (GMT -7)
RD: I know your frustration, I have been on the run around train for many years now. After MANY doctors and none that remotely agree on anything I have, I have decided to just read and learn everything possible about Lyme and come to my own conclusion and treatment plan. I do believe there are more tests for MS that could help diagnosis it or rule it out. I went that route first and have had three MRIs in the past several years. Good luck to you, and dont lose faith or hope, its all you have and you need it to keep up the fight. Take care    D

Posted 5/5/2009 3:35 PM (GMT -7)
I understand your frustration also. The fact is, if you have lyme a short course of abx like doxycycline will bring on a herx which is diagnostic of the disease without the need of tests. I don't know what if any affect doxy has on MS so you should check into that first. But if you have another bacteria like bartonella then you would need a different abx. I have had to treat myself as the doctors are apathetic idiots. You could also do an herbal regimen and you might herx from that. I believe, but am not sure, that bartonella can cause numbness, so you are probably, like the rest of us, co-infected with at least two organisms. I hope this helps you. I have had a lot of vertigo. Hang in there.
Posted 5/5/2009 4:22 PM (GMT -7)
A few years back my doctor ordered "invoked" testing that was done at the hospital to rule out MS. Also had a SPECT scan that indicated "encephalitis" as seen in "Lyme" and MRI's that showed lesions. You might want to ask your neuro to order all three of these tests and definitely go to a good llmd. You can get referrals in your area from www.turnthecorner.org. Unfortunately, not all llmd's are created equal. lol I realize how frustrating this all is but hang in there. Good luck.
Posted 5/5/2009 5:15 PM (GMT -7)
I had a MRI done last month it showed i have 10 to 15 foci that can be due to mild small vessel ischemis disease,demylianting disease,vasculitis,chronic migraine headache changes,infection (including Lyme disease and viral infection) and toxic injuries, but they are very nonspecific.

this was what was on my report, now i have been to a nero sergen and he wasnt consernd about it, guess couse it wasnt him who had this. then the ID i saw today didnt seems to be consernd about it either. i mean i do have a test report showing i have lymes. i dont understand why they want to blow me off... yes i know i dont have money but i do have a programe that will pay up to xxx amount. its like lets see u go to 100 different docs use up all your alowed and then sorry we cant help you, you cant pay for it.......grrrrrrrrrrrrrrrrrr


RD
Posted 5/5/2009 6:26 PM (GMT -7)
Rottendog, Same thing happened to me. None of the many doctors I had seen (internists, neurologists, infectious, reumatologists, etc.) seemed concerned even though I was getting progressively worse. When I finally ended up seeing an experienced llmd who specializes in neuro lyme he immediately put me on various oral antibiotics and IV Rocephin. He asked if any of the other doctors could explain or showed any concern re the SPECT and MRI's and of course the answer was NO. I have not experienced any improvements in brain function yet but was told I need to be on a minimum of 6 months of IV antibiotics and it would probably take months before I saw any difference. Of course, there are no guarantees. Anyway, good luck and try to get to a llmd who either comes highly recomended or is affiliated with ILADS.

Lymekiller, I have no idea how expensive SPECT scans and am not even sure all hospitals have them. You might want to check with medical centers in your area. I had mine done at Columbia in New York and it was covered by my medical insurance.
Posted 5/5/2009 6:46 PM (GMT -7)

Hi RottenDog.  I am sorry your appointment was disappointing.  Was this doctor recommended by a Lyme patient?  Did he say anything about testing for co-infections?

I recommend getting another opinion.

 

Posted 5/5/2009 6:58 PM (GMT -7)
Rottendog,

I am so sorry you got the run around. So he's not going to treat you at all??? An LLMD would have put you on medicine before the blood tests came back just by your symptoms alone. Wow, some of these doctors make me so angry! I went through the same exact thing too. I felt like crap all the time but my regular blood tests would come back normal except for my sed rate, which meant I had inflammation somewhere, but they said I was fine!! Yeah right!! I hate that we have to push so hard to get treatment. My family doctor thought I was crazy when I mentioned Lyme back in 2003. "We don't have that here", is what I was told. Surprise!!! I have it!!

Anyway, please try to find a Literate doctor that knows what they are doing so you can get treated. I'm so sorry you have to go through this.
Posted 5/5/2009 7:22 PM (GMT -7)
Thanks everyone for your posts and comments,

here is my delimea i have to go to who my med covage says go to, i have not been able to work in 3 yrs now. i am on a county programe and they dont pay much if you know what i mean..so i am at there mersie just my bad luck..

my next appointment with this doc is in 6wk and if i'm not better or able to see a nero by then to rule in or out MD, he is willing to place me in IVabx then.

i also whent as far as calling my vet to find out what test they used on my dog to get a positve report and asked how acuerect it is..lol he didnt know, i'm like if its acuract do it on me, i'll bark ruff ruff abd nothing was said about co infections either by him. but he did make a point of letting me know there isnt much lymes in this part of Texas. so i explaned to him. 6 or 7 yrs ago i was in N.J. then 5 yrs ago in Wi. and 3 yrs ago i was Mn. only lived in Tx 3 yrs now.( i could of get it anywhere) that didnt seem to bother him tho.

i did argue with him and all i got was a smile and told see ya in 6 wks.think my next step is to have my reg doc studing up on lymes and have him treat me, lest ways he is nice to me and willing to help me.sad thing is i know more about lymes then he does and he addments it.

sorry for the book here. thanks again for all your input. wish everyone the very best

RD
Posted 5/6/2009 11:56 AM (GMT -7)
Sorry your appt. wasn't any help! That s-ks that you have to wait 6 more weeks to even maybe be treated! I thought this past month was long a long wait. My appt. was last Thurs. and when the ID MD started talking I thought she wasn't going to treat me. According to my results, I reacted to the previous Lyme, but only one positive new reactive band and there is supposed to be three for an actual new infection. She also said that she doesn't believe in chronic Lyme, but agrees that the first 10 day round of Doxycycline in 2005 was not enough to kill it, she didn't mention why the month and a half that I've been on it this time is also not working. She said it could be that my resistance did get knocked down and my resistance was keeping the Lyme dormant thas long. She also said that it could be a new bite. But because the results are inconclusive she isn't sure if it is Lyme. She was at least willing to treat me. I had the PICC line put in on Monday, and am now on IV Ceftriaxone for 28 days. BUT if I don't improve with this she is sending me back to my MD to explore other possible causes for my symptoms.
Posted 5/6/2009 3:51 PM (GMT -7)
I agree, you must be your own advocate. I encourage you to follow every avenue you can, to get well. (not just get better)

I was blessed to find out I had lyme as soon as I possibly could.

I was originally diagnosed with M.S. by a neurologist.

When speaking to my LLMD, I found out that while I have lyme I have M.S. It's the lyme that is giving me M.S.! and when I am well from the lyme, I will not have the M.S. The dr. said he has seen it completely reverse many times.

My second set of MRIs was done after I had been on abx for 4 months. The second set showed that a flair in the t spine had resolved and that the spots on the white matter on the brain were significantly smaller.

In Jan. I got a picc and started Rocephine. I am now really beginning to feel that it is working. I've been sick for over a year. Even though, I don't know how long it will take I know I am going to be well again.
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