RMSF 2005, really sick 09, sept, neuros said migraine hospitalized me twice, vertigo, headaches, balance testing said risk of falls,tons of other symptoms but normal MRI
Oct positive CDC IGm western Blot, neg IGg...ordered by primary care Dr.
Did Doxy and one month IV Rocephin. Continued on Doxy until LLMD appt in Jan 2010.
Postive babesia duncani, CD57-28, now only one band on WB.....started babs and lyme meds.
Numerous Symptoms have continued on, meds changed over the 6 months, have not been able to return to work per self and DR recommendation so was on short term then long term disibility.
Decided to change to a well known LLMD who I saw on the 8th of July, who was able to give me an answer to a ton of my symptoms,
Positive babinski reflex, nervous system damage, occipital seizures, cerebellum issues ie temp control, balance etc etc, along with fatigue, muscle pain, memory and cognitive problems etc etc........
I saw him the 8th and on the 9th before getting the new info the LTD decided my claim would cease at the end of this month per recommendations from an infectious disease DR....I got the letter today I am outraged..
It states...i was "treated with doxy and rocephin and my symptoms persisted despite treatment, my physical exams have been normal, my neurological exam was normal, strength and balance intact, coordination and gait normal, no evidence of cognitive dysfunction".....(the only things tested were cranial nerve,alert and orientated, and eyes showed nystagmus, nothing else was tested I have my chart!!..)
My MRI was normal last year before lyme diagnosis, "while the wB was initially positive fr IGM the IGG was neg as was subsequent testing (i dropped a band this year). These findings are not typically representative of eveidence of positive exposure to lyme disease" !!!!
it goes onto say my physical complaints are not supported by physical findings specifically with respect to cognitive dysfunction. there is also minimal eveidence to support the lyme disease diagnosis as I now have neg lyme disease testing, negative CSF and normal MRI last year before diagnosis......therefore my claim will cease.......
I am so mad right now.....I lost my job this week because I cannot return to work and they cut my LTD saying I can..............typical of the IDSA BS !!!!!!!!!!!!!!.............
.anything to get out of admitting this is going on........I had a spect scan today I highly expect that will be a nail in my coffin aswell........just feel like giving up...I've had it..........so had it.....
sorry to go on.........its such a mess but how do we get anywhere with drs like this in the world..........unfortunatley I'm an RN and have worked with this for years and he thinks someone that cant even get their own kids names correct can look after patients.......he'll be the first to complain when i dole out meds and cant remember what I have given to people especially if its his family....................gosh I am so mad and so done !!!!!!!!!!!!
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
HI. Sorry this happened. I had a similar experience. Is it private Long term disability you have?
I had to get a lawyer.
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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massman
Unregistered
posted
Get a really MEAN very compotent lawyer.
The doc did not correctly examine you yet had a report that he did ? Nail him to the wall.
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posted
this was my first LLMD that they are referring too..in Jan.......she looked in my eyes, made me grip etc, toes up down, etc etc....and documented that my crnaial nerves ok and i was alert and orientated but she didnt indicate/check that she had done anymore than that.........and on the fact that i was alert and didnt have any obvious cranial nerve problem the LTD people are saying I had a normal neurological exam......so she didnt say she had done something she hadnt....she just hadnt done a full exam therefore what she did they consider I'm normal.
my new LLMD did a full neurological exam......but they decided before they had those notes....
and yes its LTD through my employer........
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
LTD companies are evil- it probably was just your turn in their stack of files to be cut off.
you need one of the top ERISA lawyers to handle this.
I know you are angry right now- but you need to put that aside or channel it into fighting back and getting what you deserve with the help of a qualified attorney.
I had to hire one of the top lawyers for my case-
-------------------- "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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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
Does look like it might be lawyer time. The memory and cognitive problems are potentially something that could be measured best by a "clinical neuropsychologist". They are expensive.
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
thanks.....but how can they prove I dont have a cognitive problem...if the drs are documenting such...........
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you comfortable disclosing the state in which you live? If so, that might make a difference in the advice you get. Some states just "don't allow" lyme and they may have just become aware of your case if you live in one of those states.
Still, it's probably time to get a strong LL attorney (even if you don't even focus much on lyme itself). You might consider requesting SSD.
Remember, this is NOT so much about a diagnosis of lyme or RMSF or anything. It is about functionality - what you can and cannot do. However, if you have other diagnoses, they may help.
Talk to those in your local lyme support group for LL attorney suggestions AFTER reading this:
posted
I fought my LTD claim and won. I did it myself. Took lots of money to request all of my medical records, but I did it. I would have hired a lawyer if I needed to though. This lyme has me down big time!!
Posts: 893 | From Florida | Registered: Dec 2008
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posted
i will have to do something...I cannot work right now.......but what upset me was the fact the decision was made BEFORE my follow up appointment and the one person they go to is INFECTIOUS DISEASE who pretty much said my original positive CDC western blot means nothing s my spinal and MRI were clear......
and how my symptoms are persistant after doxy and rocephin (1 month).........
I'm mad at myself also for not going to a more experienced LLMD right from the beginning...and getting the answers I needed......(dont mean to sound ungrateful for any Dr that is willing to help with Lyme but for me I needed more experience)....
what a mess..............
oh I'm in NC........no secret, but not a good lyme state.......
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
my llmd got my ltd claim approved(for now anyway) on the chronic fatigue symptom since it's an approved disability. He only mentioned lyme as a possibility.
diana
Posts: 857 | From northern california | Registered: Dec 2009
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posted
Yes, it usually turns out that if you avoid pinning it on a lyme diagnosis and go with loss of functions that are documented by a doc, then you will have a better chance of winning. This is not the fault of the first doc you saw; it is the evil LTD company. Don't give up.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
i'll try not too.....everything is such a mess......
thanks....
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
It may be easier to get the claim approved with a diagnosis of seizures.
You will probably need a lawyer and it could easily take a couple of years -- but be sure and find out ASAP how long you have to file an appeal. You need to keep the claim active.
I would also go ahead and file for social security disability. If the long-term disability case is settled with a lump sum cash payout as hubby's was then it will not count against your social security disability claim amount.
Hubby had seen at least a dozen neurologists who all said he had normal neuro exams. His MRI's have always showed lesions -- but that was always explained away as aging etc. He did not have a SPECT scan done until years after he won his long term disability and social security claims.
It is not all about test results -- more about function -- especially in the case of social security.
Don't give up.
Lawyers don't come cheap, but a good one is worth his weight in gold.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I'm very sorry for your experience. I had the same thing happen to me just before being dx with Lyme.
I had a neurologist appt. and while I was there he did NO exam, instead he talked on his cell phone to a friend and sent me for an EEG without even knowing all the symptoms I had.
At my next appt. I asked him why he didn't do an exam and he stated that he did do one, and that I "must not remember it".
We had words and I got my file from him as he kicked me out of his office. I looked at it and it said that he had done ALLLL these neuro tests and that they were all normal (babinski etc) when that man never laid a finger on me!
I went a few days later to a different neuro. and was found to have very hyper reflexes, babinski sign, crossed adductor reflexes etc etc.
I filed a complaint with the medical board, which they immediately dismissed. I refiled wanting to know WHY it was dismissed, then they decided to investigate. In the end, they let him off with no more than a written warning. It was devistating. No lawyer would take my case.
I wish you well, and I hope you CAN nail this guy to the wall, but want you to know that it will be a long and drawn out process. *hugs* Something has GOT to change!!!
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
Ickyticky...originally under the neuros they said things they had done which they had not, neuro exams etc....no one has done as much of an examination as the new LLMDs office on the 8th of this month.....
Lymetoo......I have a lot of muscle pain, legs, arm muscle fatigue, I also have terrible fatigue that has been documented from the beginning......
now this dr says the eye symptoms that i told my PCP, Neuros, and the original LLMD are actually occipital lobe seizures......so I have a lot going on......
just that all my answers and good Dr documentation and exam came too late.........
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Unfortunately Lymetoo is right.
You would have probably had better luck by giving it a different name. Anything but what it really is. Keep up the fight.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
i know my new docs used diagnosis codes for lyme, encephalopathy, seizure disorder, abnormal weight gain,........again it was after the decision was made.............
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
"..it goes onto say my physical complaints are not supported by physical findings specifically with respect to cognitive dysfunction."
That particular phrase from your denial letter basically sums up the problem. I know you're not going to like this, but you got denied because your medical records did not include sufficient objective medical evidence to support the severity of your disabling symptoms. As the claimant, the onus is on YOU to submit records supporting your disability. I'm not a fan of the LTD companies and know their disgusting tactics; however in this case it's pretty clear that your records made it very easy for them to deny your claim.
I think you already know this, which is why you're rightly angry at your prior LLMD. He clearly did you a huge disservice by not doing a thorough physical exam to identify and document the abnormal neurological findings found by your new LLMD.
The good news is you can appeal the denial, and include your new LLMD's documented findings with your appeal. Negative MRIs and normal lab results are fine; they don't support your disability but they don't disprove anything either.
Based on the documented results of the neurological exam done by your new LLMD, you now have sufficient objective medical evidence to make a case for your claim.
You may not even have to do a formal appeal. Your LTD plan may allow you to simply submit additional medical records within in a certain timeframe of the official LTD transition date, even after getting a denial letter (if so, you could argue that the denial was premature since they didn't have all relevant medical records).
If you do have to do an official administrative appeal, you do not need a lawyer but you may want to get one if you don't feel that you can do the appeal on your own. Your new LLMD's willingness to do any additional documentation supporting your claim is also a major factor to consider.
If you do appeal w/o hiring a lawyer, it really may be as simple as submitting your records from your new LLMD, especially if he is willing to write a brief memo to your LTD company further detailing the significance of his findings and how they impact your daily functionality.
Based on the level of detail in the neurological exam, I have a hunch of who your new LLMD may be...If it's who I think it is, he will be very supportive of your claim and also has treatments planned that no one could work while taking anyway.
Posts: 408 | From California | Registered: Apr 2008
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posted
Erica741..........thank you SO much.....everything you said makes complete sense, I went through the letter yesterday and made notes. I question how my physical findings could determine cognitive dysfuntion and really it cannot other than thorough documentation.
I also question how they can say my positive CDC WB is ineligible as my MRI and spinal tap(which I knew they would use against me) were negative, and that my next WB ( which i dont know why it was ever done) had dropped some bands making it CDC negative therefore they question that I ever had Lyme disease.
I honestly couldnt believe the difference in the exam from this Dr to the previous, I was there 5 1/2 hrs, I could kick myself that I didnt do it earlier.
The LTD claim manager called to tell me what had happened and i went through the whole thing told her i'm not just sitting here I have been proactive in trying to get better travelling out of state to "fix" this etc etc......she did say she would request the drs offic enotes and she may be able to do it at her level ........so i guess if she cant make any changes then i will proceed with a formal appeal..........
I'm angry with myself for not changing sooner but $$ prevented that as I thought it would be ok, saving a few $$ has cost me a whole lot more than that, I could kick myself right now.
again thanks................
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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I got approved using Chronic Fatigue, Fibromyalgia, and then Lyme Disease. I had medical records that documented my fatigue 10 years before I filed for disability.
Good luck to you!!
Posts: 893 | From Florida | Registered: Dec 2008
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posted
so I got a copy of the actual report today......WOW......talk about seeing what you want and ignoring the rest.......so many errors in it.....but basically says because my spinal and MRI last year were negative then my second WB was cdc neg (first one CDC positive)......there is no evidence that I ever had lyme disease.................
also because my physical exams were normal despite nystagmus, failed balance test and abnormal ENG (eye tracking), there is no evidence to support any loss of physical or cognitive dysfuntion........normal mood, despite the fact that I cried every time i have seen a dr in the last 19 months .......
I feel like after the appeal process is decided......approaching him to diagnose me and support me in filing suit against the Drs who didnt complete full examinations or accurate documentation and pumped me full of medicines that i didnt need just for fun obviously if theres nothing wrong with me, kept me off work for 10 months just because they felt like it, and recommend a good witch doctor that i could go to to help with these ongoing imaginary symptoms as its evident from his report he doesnt support the medical professionals or the labs that give positive testing........so what else??.......................
what an idiot....and he thinks i dont know where he works.........google is a blessing........
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
I think all of LymeNet has decided that ID doctors are quacks. Period. I had to fight for my LTD and my SS. I was of course denied immediately for both.
Please don't give up. Find your own doctor. Denote ALL of your medical problems. Can you work a full 40 hour work week?? If not, give them good hard reasons why you can't.
It is far from a cakewalk, but it can be done. BTW, I got my lyme disease from NC when I was a teenager. I am 38 and still suffering.
Posts: 893 | From Florida | Registered: Dec 2008
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