posted
OK....I'm going out on a limb here and assume you don't know how to cut and paste. Here's your info:
==================================== written by buggedbylyme
Maybe I'm just looking for things to get irritated about but please hear me out because this is all getting very frustrating.
Please bear with me for a little background info.
I have had lyme for 20 years. Successfully diagnosed in 2004 by llmd in LA. I lived in the
Chicago area at the time. This llmd said I had to find a local dr to work with my on the lyme protocol.
I found a young, primary care dr to do that, supervising my meds, was real interested in learning more about lyme, very compassionate,etc.
He was part of a large clinic, a jr. dr. in the practice and after 2 months of overseeing my protocol with unbelievable improvement, the SENIOR partners in the medical group "advised" him strongly to discontinue overseeing my treatment (for liability reasons)
I could tell that this dr, was devastated having to tell me this news. I thought he was going to break down in the office. I went for treatment for about another month with what was left of my meds.
Could not find another dr in my area to agree to oversee llmd's protocol. A few months go by, no meds, then my husbands job transfers to Michigan.
Only 1 llmd in all of MI. He has a 5 page waiting list. I signed on but was never called because I was too far down on the list.
My husbands job changed a year later and we moved to the East Coast, to Northern New Jersey. I thought, great, lyme country, there will be lyme specialists on every corner!
It's just a matter of who to pick. I started with one in Aug 2006. By this time, due to lack of treatment, my neuro symptoms had gotten much worse.
I am put on oral abx, which kept changing, no herxing, no improvement. I kept reading about chronic lyme and thought the IVabx route was maybe the route to go.
Made an appt with another llmd that does IVabx and believes that's the only way to kick chronic Lyme.
OK, that the history,well, at least the llmd history, I have been to so many drs over the past 20 years, too numerous to count.
With that many different diagnoses, therapies, etc, (you get the idea-this isn't rare for an undiagnosed lyme patient.
Here's what I'm getting a bad vibe about.
I make an appt with what I will call the IV llmd. I meet with Physicians asst first appt and have lab work done.
I made copies of all of my medical records, diagnoses, treatments to leave with them that day. I have records transferred from other drs ahead of time. I did everything in my power to help this process move along as smooth as possible.
They also order an MRI and a Spect Scan of my brain. Two weeks later, my husband and I meet with the llmd for the first time.
As you can imagine, my mind is totally on Lyme, questions written down about picclines, etc. The llmd reads the reports for the mri and spect, which read the same as what all of yours has read, which basically boils down to decreased blood flow in the brain.
He spends a couple of minutes on that, but my husband kept asking more questions about the scans to try to get more of an understanding, so the dr gives a couple more minutes on the subject.
Then after that, there's no talk about lyme, its all about labwork that shows a high RA factor # and #'s pointing to autoimmune disease (sjorgrens, sleroderma...)
He said that he still feels that I have Lyme but that the orals are not going to do me any good, so to stop taking them. He tells us that he wants me to go to a rheumatologist and that he would have a name for us within a week.
He also emphatically said that when he finds a rheumatologist, that HE wants to set up the appt. Not me. I waited a week. No call.
I called the office to inquire about the progress on the rheumatologist. The first girl said she would tell the Physician Asst and that the PA would get back with me.
That never happened so I called a couple of days later and said that the PA never got back with me. Then she said she would check my chart.
I wait on the phone for awhile and the receptionist gets back on the phone, doesn't even bring up the PA and said that the dr did not make a note of that in the chart about getting and setting up a rheumatologist appt for me.
She said, "I don't know why he told you that" Then she said, Oh, here comes "name of PA", just a second, you'll be able to talk to her.
The receptionist gets back on the phone and said, "You know, I'm going to ask "another girls name which is a nurse at the practice" She then got back on the phone with me and told me to look into my network of drs for my insurance for a rheumotologist or to call Columbia, where my spect scan was done.
That was all last week. I called this morning and asked if the dr was in today. She said yes but that he was with a patient.
I said, oh, I understand that and I am sure he is extremely busy right now, that I wanted to leave a msg for him.
I asked her to get a message to him about the rheumatologist. She replied, Couldn't you find one.
I replied, " No, I haven't, but my husband and I have discussed this and we both agree that if the dr said that HE was going to find the rheumotologist and that HE wanted HIS office to set up the appt that HE must have a good reason for it and could the dr give me a call so we could dicuss what's going on.
This has been going on for a couple of weeks. The office closed hrs ago and I never heard from the dr. Now, I KNOW how busy llmd offices are.
I also know that a dr can fail to make a note in a chart and something doesn't get followed up on.
It just doesn't seem like anyone is interested on follow up.
Why wasn't the dr informed after I called the first time, instead of these girls taking it upon themselves to tell me how to go about finding a rheumotologist.
(Which, when you move to another part of the country, and you're sick and you're not meeting anyone or making any contacts, how are you supposed to find one. Just pick a random rheumie out of the yellow pages?
And if the llmd feels so strongly about how chronic lyme is to be treated and I have a positive Lyme test result, why am I getting passed on to a rheumie who could take God knows how long to decide what I supposedly have and in the meantime not getting any of the Lyme treated.
And why is an llmd sending me to a rheumie anyhow? I thought Lyme, especially chronic lyme creates alot of these Lyme-induced auto immune disorders.
Would I be out of line or hurting myself by just declining the rheumie idea and telling the llmd that I want to be treated for my lyme only and then see if that takes care of the autoimmune disorder?
If he would even agree to that. I know this sounds like venting and that I have been arguing with my llmd's office.
Quite the opposite. I was extremely kind and patient with all of them and it was actually my husband and another friend of mine that has lyme that said I was being TOO patient and that it was time to contact the dr.
He's only in the office 2 days a week so its not easy to get right to him. I was all mentally "ready" to start this piccline at the beginning of April, so I would have atleast one round in before my first grandchild in born in midJuly.
My husband surprised me with a relaxing vacation that he was going to take me on starting this Thurs.
He thought , like I did, that I would be undergoing more aggressive Iv treatment soon, so planned a time away from everything, knowing that I would be tied down to an iv pole soon and weekly visits to the dr for dressing changes.
Weeks have past nothing has been done, I'll leave town, with nothing set up for a rheum or for Lyme treatment.
I know it doesn't sound too lady-like, but this all totally sucks. I thought I moved to the land of Lyme dr opportunity and have been nothing but disappointed, confused, and frustrated at every turn.
I am weary and to be quite frank , I just don't want to do this any more. I just don't know what to do at this point. A rhemuie?
Steroids? Have I no blood running through my brain at all at this point and I'm just nuts or is this reality and I have an llmd passing me off to a rheumie.
I've talked this one out and I think I'm done. If this disease would just take us fast, I think a number of us would opt for "no treatment"and be done with it.
I'm too weak and too tired to try all of the time consuming self treatments. I did years of that trying to get well from all of the other things that I thought I had.
What am I doing, writing all this stupid stuff. Looking for some miracle answer? No wonder everyone outside of the Lyme community thinks we're nuts.
They're driving us nuts. What we have to do to legitimize ourselves is absolutely ridiculous and inhumane.
I'm tired of this disease , having to defend it , tired of researching it...I'm DONE.
And if there are any lyme cynics reading this post, that have aided those that have made it almost impossible to get the treatment that we truly need, making us jump through all of these hoops to try to get help, to the point of hopelessness, then, well, all I can say is, "You're SICK"
"You must have hearts of stone letting fellow human beings suffer while supposedly acting like you're trying to protect us" I know some wish that your types would contract the disease, so you would know what we're going through. I don't wish that.
posted
Oh how right you are with your assumption on the "cut and paste". I can't thank you enough for doing it for me. In fact, you've been coming to my rescue alot lately. Thank you, thank you, thank you
Posts: 70 | From essex fells, nj | Registered: Jul 2006
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Hi Bugged, You actually may have posted it in the right forum, i.e. "seeking doctor" !
There have been some posters who have had a high ANA drop after treatment for lyme.
The run around you received could be a sign of how that office and doctor operate....errors, inefficient, etc.
Maybe that is a good indication to look for a new llmd.
You are in a good area to find someone new.
Wish you luck in your journey.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
Why don't you try faxing a short letter to the doctor, recapping your appt. and your understanding about how the rheumie thing would be handled. Make sure it is addressed to the doctor. You want to get past the office staff at this point. If he has changed his mind, forgotten, or whatever, maybe this will help to clarify, get something done.
Leave your contact info on this letter in a prominent place. Tell him he could just scribble a note on the bottom and mail back to you. Make it easy for him to reply. Or instead of faxing, you could send snail mail with self addressed stamped envelope for his response. But I would lean toward faxing it. For some reason faxes seem to get more attention than letters arriving from post office.
Posts: 8430 | From Not available | Registered: Oct 2000
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I agree with Lou, i would send a fax. I have done this before and have gotten a better response.
I also would look for a new LLMD.
Just think if you were on treatment and something goes wrong, how are you going to reach this dr?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
If I left a msg for him to call me, shouldn't he eventually call? If he forgets to call me, then
there is too much "forgetting" going on.
My best friend is on IV abx through him. He was recommended by someone else that has Lyme
induced myocitis, (which is what my friend has) He started her on IV right off the bat.
My most recent labs, from blood taken on my first visit to his office,show an autoimmune
problem, along with the Lyme. If he says he knows that I have Lyme
then why is he taking me off of orals, passing me on to a rheumie, and not starting my
IV when he specifically said in our meeting that the IV is the only way to tackle chronic lyme.
People can differ on whether that's true or not but I'm just going by what he said to my husband
and I, so why don't I already have a picc line in my arm instead of all of this dead time of non treatment.
He sounded ideal. He even said that he uses a higher grade of picc line than the hospitals use
because he's so picky and that he is also proud of the fact that he has not had any patients get
picc line infections. Since there's a possibility of a picc line infection being very
serious or fatal, the pickiness seemed ideal in my mind.
I can see the point that was made about the state of organization and the seemingly lack of
accessability to this doctor, especially if something goes wrong.
Someone mentioned good area for llmds where I live. This is my 2nd try in NJ. My current
llmd's staff steered me away from an llmd that specializes in rheumotology that is just minutes from
my house. I don't think he/she treats for cross infections though.
There's another rheum llmd about 45 min west of here but I've heard more bad than good.
My first llmd here is super nice and the office staff is pretty good but I could only get oral
abx from him/her. I really am interested in IV, not looking forward to it, just feeling like what I
have researched so far and how my symptoms have progressed and the spect scan results point to
IV treatment. Wish that was not the case but it has gone on for too long, I'm afraid.
If anyone knows of an llmd that is not in Howell, Jackson, West Caldwell, Basking Ridge or Phillipsburg,
that is excellent and will do IV and will treat for cross infections then please let me know.
I live in Northern NJ. I'm going to talk to my husband when he gets home from a business trip on
wed about possibly finding an out of state dr and then trying to find a dr that will oversee
the piccline. As you know from my first post on this subject, getting a dr to do that is difficult
and since I am new to the area, it will prove even more difficult. The owner of the company
that my husband works for wants to help find any dr that I need. The problem with that is, he'll
be told by all of his specialists that chronic lyme is a crock and that his employees wife is
probably a kook. That's all my husband needs with being in his job for less than a year. His
job requires me to do a certain amt of business entertaining. My husband has been going out of
his way to try to keep it to a minimum for my sake but he can only cover for me for so long.
That's one of the reasons that I wanted to get started soon, so I could get some relief and some
energy. Right now, I stay home or in bed until I HAVE to do something. I want to be able to do
the business things with my husband. I have always enjoyed doing things like that because I
have always been a people person. The owner of the business is the only one that knows right now
and we keep telling him that our dr is taking care of setting up another dr. He keeps asking
about me because he cares, my husband keeps trying to avoid the subject because of the stigma
of chronic lyme. So there is multiple reasons for trying to find someone soon. My husband's job is dependent on a certain amt of participation by me and lets face the reality, that job is paying the bills for lyme treatment
and as far gone as I am, it has been and will continue to be quite expensive.
You guys are all I have to find someone. I seriously don't think the present llmd is going
to come through at this point. I just have to hope and pray that someone will be
able to steer me in the right direction. Believe me, I'm not taking the lazy approach on
this. I have done my homework and have tried my best to find someone that is realiable,
knowledgable and can offer the treatment that I need.
Oh just as a little exta note, one of my husband's co-workers had a severe case of e-coli and had to go on a picc line for over a month.
He has the same insurance as us, the insurance paid for his picc line and treatment.
The same insurance won't pay for a lyme picc line though. Not Fair!!! but REALITY
Posts: 70 | From essex fells, nj | Registered: Jul 2006
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posted
I had an internist tell me I had RA due to my high #s.
This was after I had been to two rheumatologists for a total of five appointments. As hard as they tried, they couldn't tell me I have RA. (No finger joint problems, etc.) They like this diagnosis, because then they can prescibe fancy drugs like Humira.
So much for your doctor's "LL" label. Sad to think that he was trying to get rid of you.
It's hard to know what he was thinking. Maybe you should make another appointment with him--as frustrated as you are, maybe you need to see him in person.
If it were ME because I take everything personal and I get really mad when I'm treated like this, I'd take it as a sign of things to come, and look for another doctor.
It bites when you get your hopes up.
Posts: 353 | From Florida boonies | Registered: Nov 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Don't waste your time with a rheumie. I just posted today that my daughter's ANA titers are starting to come down with the addition of Vitamin D to her diet.
She had a major herx starting it, but now she is up to 800mg daily. If you don't have abx, this might be a place to start.
posted
Well, it may not be possible to find the perfect doc. You know the problems they are facing, so expect that to have an effect on your treatment. Not what the patients or doctors want, but there it is.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Bugged, Wow what a run around. Many here have been through similar stories. You did state you have a " High " RA Factor. That in itself would warrant a trip to a Rheumy. Not sure what your symptoms are but Igenex Labs does report that a positive RA factor can cross react on a western blot. It is a small percentage and I do not know if you used them. Do some research on it Just some more info
Posts: 355 | From NY | Registered: Jan 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
What ever you end up deciding...do not let them give you steroids of any kind. It will flare the lyme big time.
Good luck hugs & healing Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Three of the test pages (which did not come through the fax very well) read:
SJOGRENS ANTIBODIES (SSA) >6.00 H RHEUMATOID FACTOR 20 H ANA SCREEN POSITIVE ANA PATTERN DUAL ANTINUCLEAR ANTIBODIES SEE BELOW
Unfortunately, the "see below" part is very washed out due to the report being faxed. Something about (confirmatory of autoimmune...)
There was a IgM and IgG Western Blot done. Alot of details there. I'll spare most of you unless you are interested.
MRI - frontal lobe changes 4 x 5 size and other smaller spots
Spect Scan - consistent with Lyme CNS, vasculitis decrease in blood circulation
I can give exact "impression" given in report for anyone interested in that.
What do you mean by a high rheumatoid factor changes a Western Blot. What does that mean?
I have been to 3 llmds since 2004. First llmd told me I was positive for Lyme through IGENEX Labs
Second said I was negative through MDL
Not sure on the 3rd MDL
I had Lyme for 20+ years before being properly diagnosed. I can't imagine being cured from a few months of orals. 2 months of doxy with 1st llmd, moved a couple of times, ended up in NJ.
Doxy for a couple of months starting in Aug 2006 then switched to Omnicef because doxy was making me too nauseous.
3rd llmd took me off orals, said they wouldn't do me any good. Said I needed IV
Symptoms improved with 1st llmd after the couple of months of abx.
Then went down hill after being off for awhile.
Since starting back on abx in Aug, symptoms have not improved at all , have just been getting
worse and neuro symptoms, especially, are noticeably worse.
Posts: 70 | From essex fells, nj | Registered: Jul 2006
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posted
There is also the possibility that you have a Autoimmune disease and Lyme. Confusing? Yes Easy to figure out No...
Posts: 355 | From NY | Registered: Jan 2006
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posted
Before being treated with doxycycline, my RF was 63, normal being below 20.
A year and a half later, it was 23. Lyme Disease will make your body make antibodies.
My mother had RA. A positive RF shows up in many healthy people, too. It's not diagnostic, but doctors do use it to gauge the disease progression if signs are present.
You don't have joint swelling because you don't have RA, and your Lyme Disease either isn't making your joints swell right now or you don't have Lyme arthritis.
Thankfully I have never had a positive ANA. If you want to take a chance that further testing (I'm thinking skin biopsy, do you have skin problems?) would rule out Lupus, then you should go to a rheumatologist.
Then you will have a Lupus diagnosis. I wouldn't want that. Maybe you could ask to have the Lupus tests re-run, although for me that would be very stressful waiting for the results.
Your body makes antibodies based on genetic predisposition to immune triggers.
The other thing to consider is that antibodies come and go.
I am still perplexed as to why a Lyme Literate doc would want you to get a Lupus diagnosis when he should know that positive antibody tests are so common with Lyme. Because the rheumatolgist WILL want to diagnose Lupus.
And then they will give you steroids.
How is your kidney function?
And IMHO--It should be OKAY to say negative things about a "LL"MD if the criticism is valid. Your only fault was having to see him in the first place.
I envy those who have found a wonderful doctor who has been instrumental in their recovery. Not all of us have been that lucky.
Posts: 353 | From Florida boonies | Registered: Nov 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
It was an LLMD who sent me to a Rheumatologist. I learned on my own about the Lyme connection. The LLMD seemed surprised to hear it.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Some people think RA is infection caused and treat it with the cycline drugs. If you have to go to a rheumy, try to find one that does this. It might not be possible to find a rheumy, then try elsewhere. Have a look at the Roadback Foundation website for help.
I don't personally think medicine has a clear understanding yet of the infection/inflammation processes and why infectious diseases can sometimes produce autoimmune markers, which as others have said, can go away with treatment for the underlying infection.
Posts: 8430 | From Not available | Registered: Oct 2000
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