posted
I understand, and I have not found any of the information to be critically aimed at me or judgemental here, only informative.
I really do not know much about the medical establishment politics in particular (although I did watch "Under Your Skin" a few years ago).
I honestly don't know how I lasted 5 years with these symptoms before actually getting aggressive for help. I think the cognition/brain damage is what finally destroyed everything for me. I'm still in bizarre physical pain that will not cease either. It's just the lesser of the devastating symptoms at this point.
I did see the word "complex" used a lot in the report. That alarmed me. It sounded a lot like "difficult." Although they kept insisting how "pleasant" I was in the report as well.
The LL neuropsych report will be finished on the 7th, I believe. So I will know his recommendations. I hope he has enough sense to control for the fact that I had a high IQ prior to the test results. (They are still above average, but there are glaring deficits in areas that make no sense, and my IQ has dropped about 5-10 points in 3 months!) I keep getting the run-around that things are okay because I'm scoring "above average."
A LL neurologist is different than getting a LLMD, correct? Because I do see one in NYC already. Dr. R., not Dr. H. to whomever asked. But perhaps finding an LL neurologist would be beneficial as well to handle my neuro complaints (independent of infectious disease and brain damage ones?)
My rheumatologist tested me for porphyria, I believe, and the results were negative. But I think there is more than one kind.
Nobody will refer me to an endocrinologist, for whatever reason. So we have no idea what is going on there. However, I haven't really felt certain biochems in the adrenaline family for months. (To put it in perspective, I was accidentally in the crossfire of a gun battle- I got lost in the city. And there was no adrenaline or sense of danger, which scared me more than the gun battle itself.)
I apologize if my circumstances have brought up bad memories in others, at least if that's what I'm understanding from the posts above? I am having a hard time figuring things out.
Also- LLMD ordered a SPECT immediately. I'm still waiting because my insurance company delayed proceedings for a month, then chose to deny the claim, saying they would not fund it because it is not medically necessary. So I need to figure out another way to get one. They say SPECT scans can show the most about the type of damage and what it is caused by.
Posts: 36 | From Connecticut | Registered: Jun 2012
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
It's important that the SPECT is ordered by an LLMD. Apparently, SPECT scanners are not calibrated to a universal standard � this I learned after the fact, when my scan covered by insurance was useless to the LLMD...
I think they do them at Columbia?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i was told columbia was best and got mine there
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Don't be concerned that I said this brings up so much bad treatment from the past. I had said that only so that you might better understay why so many are so vocal about this.
We choose to help, even if it might be hard for us to remember what we went through - are still going through. We want to change for better others' experiences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I would not spend money on a SPECT scan, really. It can be of help but if even one dollar would be taken away from what you have to treat, I would not do it.
It won't show much that any good LLMD could not tell by your history, symptoms and clinical presentation.
There are only two LL neurologists in the whole U.S. - maybe just one.
You don't need a bunch of different specialists -- that's not what I meant by a team of doctors.
A LL neurologist would not be the treating doctor, anyway.
Endocrinologists who are LL are also very rare.
I don't think you need a bunch more tests. You already know you have 3-4 TBD. None has been adequately addressed (going by your past posts and timeline).
A good LLMD or LL ND -- or both - is the best place to begin.
You might also seek out a LL ND experienced with RIFE machines. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Keebler.. A SPECT could be very valuable for her.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- IF should have been capitalized. IF you have to use all your money on that and have nothing left for treatment, that's what I meant.
If the spect is affordable, indeed, it may help. But since insurance denied your request, it's likely going to cost a great deal of money.
I've gone broke for paying for tests that told me what I really already knew and were quite within the research & observations for those with several TBD.
Three QEEGs were just an example. All supplied verification that my brain waves were slow and that seizures came from a certain place in my brain during certain tasks.
Still, the regular medical community did not accept any of that. LL literature and CFS literature speaks to the "slow brain waves" so it was nothing new. My symptoms all pointed to that. Yet the tests did help me with validation. But it took money away from treatment that I missed out on.
As for IQ, it's very common for IQ to take a dip. Several LL authors have written about this. Happened in my case, too. Went down 20 points but still within normal range so it was not seen as a big deal by those who were not LL. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lightbulbs continue to light up, possibly connecting more dots.
About IQ testing. Actually, the tests may show a drop in score but it may not be reflecting a true change in IQ but a change in language processing and retrieval which can take a dive due to inflammation, infection, fatigue of chronic illness.
As for a neuropsych test, UNLESS it was done in the style of Sheila Bastien, PhD, it will not likely be as helpful.
There are some LL authors who have written about this as well, Bastien's work is more about how the MM test (it has 4 initials, I think) must be altered for those with CFS. That also applies to those with lyme. You can google her name.
Lyme and "CFS" patients really do better on tests that are not ones most typically used.
I am just too tired to elaborate but, again, when testing is done by those not LL, the tests are often not going to supply the best view -- or be able to be properly interpreted.
Another research of brain function, Myra Preston, PhD has done extessvie work for CFS and brain funtion and that also applies to those with lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Have you tried an abx challenge to see if you herx? Seems like a worthwhile thing to try.
Posts: 342 | From Philadelphia | Registered: Dec 2011
| IP: Logged |
The ID doctor said that I "probably have a disease that hasn't been scientifically discovered yet, and therefore cannot be tested for." She agreed that something terrible happened on December 28th,
That is exactly what the ID doctor told me!! My date was April 16, 1986, and I was 27 too!
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic