I need some advice. I am 26 and started to have vision problems..Back in Feb of this year. Was losing my vision and was admitted to Barnes Hospital diagnosed as having Optic Neuritis. Was running fevers and having BAD Headaches and neck/back aches. During the hospital stay many tests were done! They were trying to figure out what is going on with me. They asked me if I have been bitten by a tick and I told them I live on woodded land. And yes I pull ticks off of me all the time. And that was it never said anything else.
Long story short I was referred to see this neurologist specialized in MS. He told me that I dont have MS and that I dont fit qualifications for MS and told me that the steriods during the hospital stay was plenty to help my optic neuritis. and he sent me on my way.
Then when I got home my eyes got worse. I couldnt see at all. just shadows.. I called my neurologist and told him what was going on and he told me to go to a local hospital as outpatient and get 3 doses of 1000mg of IV steroids and that should help and still tells me I dont have MS.
I did do as he asked and still didnt get better.. Steriods made me SICK!! And eyes kept getting worse.. I had bad pain in the eyes, sensitive to Light the whole works...
Then since I still had visual problems he had me do ANOTHER round of steriods 1000mg IV for 3 doses and that was it.. I Got SOOOOOOOOO SIck and new that we couldnt of been dealing with MS because these steriods would of done some good..
I received a ToTal of 9 Doeses Of 1000mg of IV steriods not counting I was on a tapered dose steriods pill form each time I had the IV steriods.
I just kept getting worse... and had to many other symptoms going on.. which he blew off.. Never once did he want to see me he just kept sending me to my local hospital and getting IV steriods and never did any blood work or ANYTHING!! Only had seen me once in the OFFICE!
I still continued to go down hill so he admitted me in Barnes to get the IVIG infusion for 3 days. At this point I did some investigation and found out my neighbor was going through same symptoms I had and she had lyme.. So during my stay I asked him to do a western blot for lyme and he was angry with me and told me that I dont have lyme but he will do the test if I keep insisting.
Come to find out he told me he did the western blot when they only did the elisa test. He lied to me. Which I didnt find that out until I got a copy of my records to take to my LLMD. SO I went to see a LLMD and had blood work done. I had a western blot done at igenex and was POSTIVE.. SOme bands had four ++++. And my LLMD clinically diagnosed me with blood work and symptoms.
So I called my MS specialist and told him and faxed him a copy of the results and he told me that I dont have Lyme and that he is not familiar with this lab and basically told me that THERE IS NO WAY I HAVE LYME ITS NOT IN THIS area and YOU havent traveled.
I had two brain MRI's that stated that it is UNLIKELY MS. I didnt meet qualifications for MS but yet this doctor insisted that I needed to be started on the beta seron Injections for MS! He wouldnt even listen to me and even at one point he told me that I am just not a typical MS patient.. I think I might need to get another doctor in on this case but he never did..
ANyways, due to the massive amounts of steriods I have received I have had a rough road during the treatment of lyme... Initially I had to be off work for 7 months and have had many complications. My lyme doctor told me that all of the steriods I have received is going to make this a very bumpy road for me and that I may be chronic due to the steriods I have received. I now have 50% nerve damage in both eyes and glasses will not fix the problem.
My husband and I have thought about seeking a lawyer and sueing the doctor.. Do you think we would just be wasting our time? Or would any of you guys do this? We have never sued and dont even have a lawyer.. but I just dont think what I have went through is fair and I would like to help another poor MS patient that could be misdiagnosed... Please let me know what you guys think.
THanks!! ANY ADVICE IS GREAT!!!
THanks for taking the time out to read this!!!
Posts: 61 | From ILLINOIS | Registered: Nov 2005
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posted
So sorry, the world seems to be full of docs like this. Seems like I have heard this story several thousand times at least. Experienced it myself.
Maybe others can comment on the advisability of suing. The problem is that even with a positive test from IGeneX, you may have trouble in a lawsuit because they will just trot out the Steerite people as expert witnesses for the other side, and then they will say that even if you had Lyme, a few weeks of treatment will knock it out completely and now you have "post Lyme Disease syndrome" which they will claim is not infectious and needs no antibiotic treatment.
Your side will need to have expert medical witness and I think it would be very hard to find any LLMD willing to go to court.
Sorry to be discouraging. These guys should be drawn and quartered, in my opinion. And after, that, poisoned, shot, and run over by a train.
I do know of one successful case of this type, but the medical practice at fault declared bankruptcy and so, as far as I know, the patient never collected the award from the court judgement.
Not saying you shouldn't sue, just saying it will be uphill all the way. Have you considered filing a complaint with the state medical board. They will probably not do anything, but it might throw the frighteners into this jerk, so he might be a little more careful next time around.
Posts: 8430 | From Not available | Registered: Oct 2000
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi BBWaggoner.
Interesting first two initials!
Golly, you've had a rough road. And a really stubborn neurologist.
Many on here have similar stories.
I can't tell you NOT to sue, but I doubt you will prevail, since a negative ELISA is "the standard of care" and all the doctors clinically "have" to do to rule out Lyme. That, as the first step in a two-tier process (western blot next if ELISA is postive), is in my mind one of the reasons Lyme is so often misdiagnosed.
The ELISA ought to be thrown in the garbage. It's worthless and too many ducks rely on it and are blissfully unaware of the words "clinical diagnosis."
My own neuro continues to this day to insist I don't have Lyme but MS instead. He continues to say my EM rash was probably just an "allergic reaction." I mean, these guys are really dug into their position.
I'm just so thankful you've found an LLMD to begin to undo some of the insult to your immune system.
I wish you healing. A pox on neuro ducks!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
And by the way, Lyme has been reported in every state in the union except Montana, which seems to have some other mysterious lyme-like disease. So, your neuro is wrong about Lyme not being in IL.
Here is one link to a report on lyme in IL, and you can google to find more.
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
An arsehole Lyme uniformed duck threw steroids at me after I had had a bad reaction to them in the past. He told me it was so rare to be allergic to them. When they set my skin on fire, he said it was anxiety. He also said that since I'd had a dose of doxy, I was cured as there's no such thing as chronic Lyme.
My plan: Step one, dump em. 2. file a complaint against him with the hosp and state medical board. 3. Evauate all options.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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WildCondor
Unregistered
posted
Hey!
Listen, that Neurologist was a total moron, ignore everything he said and move on. Believe me when I tell you I have been there. I saw 3 Neurologists, 2 told me I had MS, one told me I had CFS, all total BS! Neurologists are all useless with Lyme issues, atleast to me. What it sounds like you really, truly need is a good LLMD, that means Lyme Literate Medical Doctor. I know, lots of abbreviations. Its the medical community...sorry Okay, well, please let me know if I can help you at all. below is my website and here is my email...I have been through it all and have gotten better!
the most important thing right now is your health, and stress can be a big factor in your healing.
that being said, in my opinion, that DR definitely made mistakes in your care.
Igenex is good to know if you have lyme, but as for trying to sue the DR, you might want to ask your LLMD to order a Western Blot from a more mainstream lab just to see if it also comes up positive. that might help in any legal matter.
also, you might want to take your MRI films to either an LLMD neurologist - there are two that know about. One in Connecticut and there is a clinic at Columbia Univ in NYC - or another MS neuro at a major MS clinic to be evaluated.
if that is too far away from you, you might want to give a shot at another MS neurologist - just for the sake of being evaluated....just to see what they say....i don't know where you are located but there is an MS discussion forum that i visit from time to time, and lyme comes up fairly often. they have a good DRs list that might have someone near you.
i have seen a few neurologists some were just unhelpful, one was even mean, but i finally saw one that was very helpful and very thorough. he doesn't think i have MS, but he took me seriously and did every test and will continue to check me once a year.
you saw an awful neurologist, and there are many awful neurologists, but it may worth one more shot at a major MS clinic. especially since you have a serious complication like optic neuritis.
it might also help if you ever decide to sue the other DR.
Interestingly, the LLMD neuro in CT uses IVIG to combat the immune system problems that he believes are triggered by lyme.
i also would suggest not over doing it. you don't want to make yourself sicker. take one step at a time.
if you have any questions for me, let me know.
thanks bill
PS - sometimes it is nice to start from scratch after an awful DR experience. it seems like you have an LLMD that you like which is good, but you can still see another neuro - take your MRI films - don't even really tell them all your problems with the other DR. just say "here are my symptoms, what do think is causing my problems?"
just see what they say. did your MRI show your optic neuritis?
Posts: 127 | From MA | Registered: May 2004
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liz28
Unregistered
posted
Call the Chicago Tribune and request a copy of the Chicago Tribune Magazine from August 21, 2005. Lead story: "Is Lyme Disease As Close As Your Back Yard?"
If you haven't read Dr. Joseph Burrascano's guidelines for 2005 yet, do so right away. Just plug the name into google, and memorize everything. Unfortunately, he has a lot to say about steroids.
Also, whenever you can't get Lyme or co-infection drugs, the backups are: artemisinin for babesia, and doxycycline for Lyme, until you can get stronger antibiotics. You can get arte from a vitamin store or online (Lymenet people always seem to recommend the Nutricology/Allergy Research Group brand) and doxy from a dermatologist. You can also try minocycline, but it can have severe side effects.
You might not want to mention to your dermatologist what the doxy is for. But if you happen to have some used cooking oil that you could mix with lard and river sludge and slather on your face for a couple of days (although I am under no circumstances advocating this and then present a stubborn case of acne, and specifically request doxy, you can almost always get an eternal prescription. If one doctor says no, there's more out there. Again, don't slip up and say, omigod, this is really for Lyme.
In other words, sometimes Lyme patients can get caught up in the drama of being sick. The rule is, save your energy for getting mad and resentful for when you are back on your feet, because you are not imagining things. You are being jerked around, and if you wait to be rescued or understood or treated like a human being, you might be waiting a long, long time. The Lyme world is filled with incompetence, arrogance, and fraud--which is why it is important to learn all the available treatments BEFORE you ask doctors, including LLMDs, for help. Since Lyme is a crippling, often life-threatening illness, you have to go to war for your health first, and don't bother with logic, just get your hands on anything that will help you function.
There are many underground doctors who will help Lyme patients, even if they are not official LLMDs. Again, these people will respond more favorably if you walk in knowing all the treatments, so you can ask for what you want. The benefit is that they cost less, and are bound by mainstream ethics. The downside is that you have to be a lot more together when you deal with them than when you are seeing an LLMD, and often have to forgo emotional coddling, since these doctors are taking a huge risk just by helping you.
Another important point is to take everything you can for systemic inflammation. I've benefited a lot from a vitamin store supplement called theanine, and there's another one called bromelain, plus there are some mixtures that tout themselves as Cox2 inhibitors, although they are pretty weak. If you can tolerate Celebrex, it can help a lot with anxiety, fever, mood, insomnia, and general sanity, but it does have well-documented potential side effects, so please research first. If 200mg/2x day is too much, you can try 100mg three or four times per day. And magnesium supplements, even the cheapos, can help with moodiness and anxiety.
There are a number of drugs, herbs and supplements taken to increase blood flow to the brain, eyes, ears, etc. If you research websites pitched to people with Alzheimer's, stroke, fibromyalgia, or just general memory loss from aging (there's a million of these sites out there), you'll start to see a definite pattern in what actually seems to work. Some sites are fringier than others, but sooner or later, you'll see the same names popping up over and over.
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and then present a stubborn case of acne, and specifically request doxy, you can almost always get an eternal prescription. If one doctor says no, there's more out there. Again, don't slip up and say, omigod, this is really for Lyme.
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