seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Well, I think the original poster is probably well aware now about everyone's opinion on Mayo!!!! OMG. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
Sorry I have not responded to the thread. I was at the Mayo and could not get access to the thread in the meantime.
Consensus: HOLD THE MAYO.
Thank goodness they did not waste more of my time. I was only there for two days, and they sent me home to "wait for test results."
The neuro symptoms were addressed by a neurologist, who ordered a few tests, none that came back with anything. He retested for Lyme and coinfections and such. Obviously, those were negative, as I expected.
There was not much emphasis placed on Lyme at all during my visit. But there was also no emphasis placed on why I was there, which was the dramatic cognitive loss.
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, but said it was up to the neurologist to figure it out, since it wasn't her area of expertise. I thought she was very nice, though.
She beat around the bush telling me that I may be antibiotic sensitive, and should not take any more, but would not admit that they caused a reaction, but hinted they did, but also that Lyme did not. She said it was up to the neurologist to examine me.
The neurologist rushed me out and sent me home.
He said he is waiting for the results of a test done, and they will get back on Tuesday. I have no idea what test he is referring to, since I have all the results already on the "Mayo iPhone App."
They didn't even send me to a rheumatologist for some **** diagnosis. Nothing.
At least they didn't pull the psych angle on me. Honestly, I don't even think they gave me enough consideration to think to pull it.
My neurologist recommended I could take Ritalin for my "concentration issues." Perhaps HE should have been the one paying attention, not me.
They didn't seriously consider the neuropsych scores because an interpretation was not provided with them. (They were raw scores.)
I could interpret the damn things, and I'm not a doctor.
Even if I don't have Lyme, if I do, if I still do, if I never did, who knows. But they are supposed to the most investigative medical establishment in the country. And their investigation of this "wonderful medical mystery" took less than 48 hours.
I was so ill from brain overload by the second day that I was in a wheelchair all day.
Maybe when they discover that "mysterious illness that they can't test for yet because science hasn't discovered it," they'll name it after me.
What an absolute bunch of garbage.
Posts: 36 | From Connecticut | Registered: Jun 2012
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Oof! What an ordeal. I'm horribly disappointed they didn't take more time with you � I'd also believed the hype that one would receive a thorough workup. Maybe Mayo isn't what it used to be?
What a joke about the mystery illness. Everyone here knows exactly what that is.
There is a LL Neuro psych � have you considered consulting with them?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
posted
I went to Mayo several years ago and didn't have a bad experience per se, but I didn't really accomplish anything.
They didn't catch the Lyme, and they simply diagnosed me with Dysautonomia...they missed the whole picture.
If I were you, I would put that money into seeing doctors I KNEW were knowledgeable and open to Lyme; however, if you are worried about ruling other things out, this is the place to do it!
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry your time there was not helpful.
Did you ask them about PORPHYRIA when it was suggested that you may have reacted to medications?
I hate to tell you but they may have handed you a psych diagnosis, after all with the
"probably have a disease that hasn't been scientifically discovered yet, and therefore cannot be tested for."
That is code for psych.
Nearly exact same wording landed on my head when I was so ill and looking for answers that they said what you were told and also "you have something for which we cannot test - it would not show up on any test."
I thought that, maybe, the doctor realized the tests were just not good enough yet.
I later found out - by getting a quick look at my chart when he was out of the room - that is code for someone they want to kick out the door, someone they think is not ill. It was meant to "quiet her to stop asking for any more tests."
Months after leaving that doctor, paying out of my own pocket through a ND, positive tests from Igenex Lab for Borrelia, Babesia and HME (Ehrlichia). They just had not done the correct tests at the correct lab.
It was also later discovered that I had Porphyria, hence the adverse reaction to medications (along with the herxheimer reaction).
Do not underestimate the HERXHEIMER reaction from antibiotics in the presence of lyme. It can cause severe reactions and if liver support is not up to speed, it can be misinterpreted. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Spirocheta so sorry you had to deal with Mayo's invalidation.
It sounds to me like you have Lyme and your body is very sensitive to meds. You probably have the bad detox gene. Your body can't break down the meds, nor the toxins, nor the dead bugs.
So, like me and many others on Lymenet, your body responds to meds like they are poison. I bet the brain symptoms are due to inflammation.
I don't think there is any particular way that Lyme affects the brain, everyone's manifestation is different...so I question how your LLMD would find it odd.
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
From your post on another thread. "In November, ironically, I was bitten by another tick and contracted another strain of Lyme. The new, terrible knee pain was what alerted me. The new test was:
IgM 41 and 2 other IgMs, don't remember them.... I think 23 and another.
IgE 41 IgE 58 IgE 66
I also tested positive for Rocky Mountain Spotted Fever."
Were all the tests from Nov 2012? If so, it doesn't matter what testing shows 2 months later, you had positive tests for tick-borne illnesses. That's what you have.
Plus, the weaker the immune system, the weaker the immune response, thus negative test. The sickest patients have negative tests.
I don't know who the world renowned LLMD is in NYC, but why is he re-testing you 2 mos later?
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Sorry about this. I guess the best that can be said is that they didn't keep you for a week and do another spinal tap.
This combination of tickborne diseases, time, and the individual response to meds is so complex, it is certainly hard for most doctors to understand, much less a patient.
So patients keep looking for someone to take them by the hand and lead them thru this maze. Don't we all want this? So we go to the big name institutions and they fail us.
It took me quite a while to learn about tickborne diseases, and I still don't get all the complications that keebler has mentioned to where I could act on them. This is with some scientific background. Pity the poor people who have no such background.
I don't think any one doctor will have all the answers. Lyme docs are snowed under with patients and being persecuted many places. And they are not getting the research help they need from the research establishment. And yet they still do a better job than places like Mayo with all those specialists on hand and their own labs!
Each of us needs our own advocate to lead us thru the process. Lacking that, the best any patient without a science background can do is to take one suggestion at a time from other patients, like on this thread, and try to see if that might be worth exploring. Your response to meds sounds like the first one to look at.
We all want what you were looking for at Mayo. Unfortunately, it isn't there.
[ 03-31-2013, 06:42 PM: Message edited by: Robin123 ]
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I would stay away from tufts too. They suck.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
It only takes 3-4 years to get a medical degree � as we each get well, becoming MDs is an option to consider...
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
posted
Okay, I'll try and hit on all the questions and answer. I've taken a bad turn since coming home from Mayo. Probably from the stress of it all, but my brain is really failing, in particular my memory. I feel like if I don't do something soon I am going to end up in the psych ward because I just freaked out and lost it, and then that is all they will focus on.
Re: The Lyme doc in NYC- he DIDN'T actually retest me. He only tested me for other coinfections that hadn't been tested for yet. He believed that we should just proceed to IV ABs, and that I needed the neuropsych eval.
I am waiting for the results of that test. It was done by a LL neuropsych, and it will take a month to get the report back. So, in another week I will know the results. I saw my raw test scores and I have lost a ton of short term and working memory, as well as processing speed.
Keebler- There is a Mayo clinic app now, that lets you read the doctor's notes submitted after evaluation. I went back and checked both of these, and thankfully, there was no mention of anything psych-related, or even the "code words" in the report, so I hope that it stays that way.
I do have to say that, when I was retested for Lyme (and I have been MANY MANY times in the past), something DID get helped, because I have always consistently tested the same bands positive over 6 years. For the first time, I only tested IgG 66 positive out of ALL the bands.
Doesn't that band correlate to a coinfection?
Here is how careless they were: I provided them with a CD copy of my spinal tap results, along with the MRIs and such. They kept saying, "Oh, she had a spinal tap, but we can't find the results." Same with my positive Lyme blood tests. They "couldn't find the results," I knew I had them, and when I went back with them after digging them out of my file, they said they no longer needed to see them.
Two big questions:
-PORPHYRIA: This has been thrown around by my neurologist at home, but I have never tested positive for it. However, I question a lot of things because so many of my symptoms began when I took innocent antibiotics that had nothing to do with Lyme, even. (Diflucan?!) Sometimes I had reactions, sometimes I did not. I'm assuming it depends on the dose and the length of the antibiotic.
What kind of tests are there for porphyria? How would I know if I had it?
RE: Antibiotics: Has anyone heard of intercranial hypertension as a result of doxy, especially in people who may be sensitive to ABs? I am pretty sure I had this, and I don't know how much of this contributed to the damage either.
Also, I was told I had a slightly positive ANCA titer. They did an MRA of my head and said it was normal, and so they decided NOT to do another blood test for the titer, saying that it was "probably a fluke." What is this? I know it is some kind of vasculitis, but isn't it irresponsible to discard it?
poppy is right. I do need an advocate. I could be my own until the brain injury stuff occurred. Now I am going downhill fast and I can't figure anything out. I don't know what to do and I am becoming even sicker physically as well (in the first month after stopping ABs, the symptoms went away, but now they are returning).
I don't want to get thrown in a psych ward. I also don't want to give myself more brain damage from antibiotics. But I don't want Lyme and co. to give me more damage from not getting treatment either.
I feel like I'm going to fall through the cracks and become a casualty of the medical system. I don't have any hope left.
Posts: 36 | From Connecticut | Registered: Jun 2012
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Did the LL neuropsych have recommendations with respect to course of treatment? What did he say about your increase of symptoms during abx treatment?
Have you looked into neurotoxin detox protocols? Dr K created a PDF that is easily findable on the web (it involve chlorella).
Did you try taking an antihistamine when you took the abx? Two separate LLMDs have suggested this to me to curb the symptoms, if it's a Herx.
GiGi has been suggesting MMS for detox; the protocol looks complicated to me (though my bet is that it is less complicated in practice than from what I read); there is also some controversy about it � I'm sticking to chlorella until MMS has been used by more people / I get compelling evidence to use it over chlorella.
This disease does kill people. Every time I think of Steve Seibert, I get a little chill bc I have, at times, been nearly or as sick as he was. This disease destroys careers; being connected to a personal social network; relationships. That said, if you're persistent, and use your common sense, many do get better, even if it's not 100%, and even if it takes an inordinately long time (myself included).
Realizing the mainstream medical community is abandoning one is a big disillusionment; it takes time to get one's head around the difference between our idealized views of people, and reality. You'll get your head around it.
Oh and if you decide to see a shrink, try to find one on www.mindfreedom.org � you think we've got problems? I have a family member with a psych diagnosis, and it's a constant battle to prevent having their rights violated.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
posted
Spiro, I had the worst headaches just over a year ago that lasted for about 8 weeks. Constant headaches.
The only thing that helped was steroids. I know everyone here on the boards is going to freak out, but I had inflammation in the vessels in my brain.
I was barfing and couldn't keep anything down and thought about walking into a snowbank b.c. I couldn't deal with the pain.
I have to take daily steroids because my body doesn't make natural steroids and there isn't an option.
The only time I had relief was just after taking my morning dose of hydrocortisone. Ine if the biggest problems with lyme is inflammation.
So far, there aren't good ways to deal with it. This worked for me and was on minocyline while taking high dose steroids.
You didn;t say if you had a SPEC scan. It can tell how your brain is being perfused and active. If you have areas that don't light up on the scan,they have empirical evidence that something is going on.
You need to get a hold of a lyme literate neuro. Ask for one here at the boards.
I understand the fatigue.
Do you have a lyme support group where you are? I enjoy my Portland, OR group and they are truly supportive and knowledgeable.
Take a tiny breather and make a list of things to do. It gets the procrastination factor out of your head and makes baby steps manageable.Let us know how you are doing.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Spirocheta,
Doctor notes TO the patient are very different from the notes that the patient is not supposed to see. The doctor will not make available to the patient the full extent of their notes.
I saw mine my accident.
A few year later, I had to schedule with a patient advocate to look over other notes from a university hospital where I had seen several doctors.
I was shocked at what was in my file regarding the doctors comments about my case.
The code term "difficult patient" had been marked in large letters inside the cover to one file. I asked the advocate why it did not say "difficult CASE" as I was never difficult in my demeanor. She explained that "difficult patient" is a code for a malingerer and complainer.
It explained why, after that, no doctor would take me seriously. My file haunted me.
Even standing alone, what you were told is known to be "code" for other doctors who may see this later. They will interpret it in the worst way, most likely.
It's like the term GOMER (and similar ones). Doctors will note on "difficult patients" charts in the ER, they are a GOMER and all doctor who later see the chart will know it means "get out of my emergency room" kind of patient.
In the regular medical world, where royalty from around the world come for the toughest cases, all doctors bow down to Mayo. If something is wrong, "Mayo will find it" is their mantra.
To be told by Mayo that they can't find what's wrong - or even that there are not tests for what ails one - well, be very careful to whom you say that as any regular doctor will then assume they just dismissed you.
But, as for going to any regular doctor, that does not seem a likely action at this time since
most doctors are simply not able to treat someone with the combination of tick-borne infections as you have so you would probably still not benefit unless they are extremely lyme literate and then they will certainly understand that Mayo just pushed you aside.
Sadly, now they also have a case a patient self-reported antibiotic harm regarding lyme treatment that they would love to just "outlaw" anyway. They can use that even without your permission as long as they do not reveal your name.
Just in case you see any of the doctor you saw, or any in their department, or even any from Mayo coming out in the future with such an article, just keep your eyes open.
I've seen many such very short notes or abstracts throughout the years of patient reports of this or that reaction to a medication.
There have been several about lyme, too, where the patients reported feeling worse with Rx -- because the process was misunderstood or the pateint had the wrong Rx or not enough liver support due to inability to metabolize toxins.
Still, I hope you have a sense of relief that other things were not discovered. Still, please be aware that the combination of tick borne infections are plenty for anyone to have on their plate and it takes the best LL doctor to sort it out, in time.
I voice my thoughs here - not to sadden you (although it may and I'm sorry about that) . . . but so that you can become more aware of dismissive treatment practices and terms that I wish I had known long before.
Even if they say it with a smile, a dismissal is a dismissal. Even if they are nice about it and personable or crack a joke about the day's events -- a dismissal by Mayo can have a boomerang effect.
And - really - even aside from lyme I do wish they had done much more investigation. I cannot believe they did not even consider porphyria. They are good with that, actually, and they most certainly - without a doubt - should have assessed you for that. Instead, they were nice to you.
I so hope you find the best LL doctor(s) -- as you set sail for the next leg of your journey in this "new" world.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
GOMER along with MUPS (Medically unexplainable symptoms)
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: "probably a fluke." What is this?
It means they will disregard the information.
"Fluke" has various defintions but you can look it up for one better than I can come up with. I just can't think of how to explain it to someone who has never heard the term before.
For sure, not a fluke as in a liver fluke.
The "fluke" they are taking about is more like the the detail had been wrong - or did not mean much - or just a one time thing that would not likley happen again. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: "intercranial hypertension from doxy"
Actually, doxy has been seen to help reduce pressure in the brain - at least for some.
Brain pressure, noted as Intercranial hypertension (high) &/or hypotension (low) can be a result of brain infection. The INFLAMMATION that come from infecion can stress blood vessels throughout the body.
Changes in the "brain pressure" are common for those with lyme.
A SPECT SCAN will help here to "see" but, as for the cause, any of the tick-borne infections that you have can do that. And brain pressure can be "a moving target" that is to say it can change. Still - a SPECT scan can show patterns.
And in those with "CFS" and other similar conditions (regardless of the reason) hard physical exertion can have a marked effect on the brain for those with swelling.
The NIGHTENGALE FOUNDATION in Canada has seen this with "CFS" patients who exercised a day and also two days before the SPECT SCAN. Those who did so (with aerobics) had scans that showed major differences (and not good) in brain pressure.
What helps?
MAGNESIUM is a wonderful helper for either high or low brain pressure - as are other supportive methods often suggested by holistic LLMD or LL NDs.
Ultimately, treating the infections adequately with proper support. However that is done. -
[ 03-31-2013, 03:20 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- lax mom reminded me that there are other "codes" that doctors use among themselves.
Also, though, it's imporant to understand how doctors think, for better (and that does happen) or worse.
Topic: "DIFFICULT PATIENT" label - HOW DOCTORS THINK - "code" terms -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I am also sorry you did not get the help you need.
Was your spinal tap done to test for Lyme?
Do you see either Dr. R. or Dr. M.?
Posts: 4682 | Registered: Oct 2000
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I think spirocheta represents a lot of patients who have a hard time coping with the complexities of tickborne diseases and related issues. This is a sink or swim situation and very many folks are just not equipped. Why should they be, why have a dog and do the barking yourself?
It is just very sad to see this happening again and again to patients.
Keebler is right about articles being written about lyme patients, trying to diss them and their doctors. There was one some years ago about a poor woman who had trouble with her IV line. She could not find an in-state lyme doc so had no local support. Went to a local hostile medical place for the infected line. Died from the infection.
This was used to blacken the patient and doc reputation. Nothing said about why the patient had to go so far to get treatment. Nothing said about the inability of the local place to cure the line infection. Just disgusting. This was written by a Mayo Clinic doctor.
[ 03-31-2013, 06:40 PM: Message edited by: Robin123 ]
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Another thing: you can look up the side effects of any drug you are on. Internet great for this. Pharmacy printouts are not very thorough. Yes, doxy can cause "benign intracranial hypertension." If I knew doxy was the cause of such a symptom, I would stop taking it. Good to know side effects, just don't get too paranoid and think all of them might happen.
Between side effects, herxing, variable symptoms, it can be very hard to figure out what is going on. For instance, it could have been intracranial hypertension or it could have been a babesia headache. Or perhaps the hypercoagulation caused by lyme infection may cause a headache. It's enough to make a strong man weep.
And if you do a search of the archives here for porphyria and related subjects, several times in the past people have posted what tests and where to get them done.
[ 03-31-2013, 06:07 PM: Message edited by: poppy ]
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: Drug Interactions Checker (and also for supplements) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Spirocheta,
I'm not sure about others here but suspect they may feel similarly (even if I can't explain this as I may like to).
One reason you may feel a strong reaction from replies here is that many of us have BEEN to Mayo or other university hosptials that were / are lauded as the best.
Many actually have been built on a hill and in more than one city, the medical center is just called "the hill" with all the religious hope wonder and certainty that miracles occur there.
Many of us has high, high hopes of finding exactly what you went in search of at Mayo. That did not work out well for most. Often, the opposite with medical malpractice and even abuse (even when delivered with a smile).
So, if you sense that we may be forceful with our pleas for you to not go -
- and even now upon your return, not at all saying "told you so" but hoping that UNDERSTANDING more about lyme (and RMSF and all the other TBD that you have positive tests for but have not yet received adequate comprehensive treatment) . . .
Well, if you sense we are passionate about our advice, a lot of that likely comes from our pain, our failures with seeking help from all the wrong places. I know I want to help others avoid that. The ramifications can be huge.
NOT understanding all I could about how lyme (and all the other coinfections, liver stress, adrenal damage, etc.) really hurt me early on. I was grasping as straws when, all along, with the TBD, it all really did make sense.
I just could not wrap my dizzy brain around it - still wanting to believe that my best hopes lay with the univeristy medical systems. And they just gave up on me, even literally kicking me out during seizures, more than once at more than one hospital.
I was wrong about thinking these medical centers could actually help - or would search deeper if they did not know. Nearly deadly wrong about that.
Regaring those with chronic stealth infectins, it's a terrible culture that permeates the entire univeristy medical system in the U.S.
So, please find a LL doctor who has the education, the experience and the capability to address your needs -- or find a team as it will likely take a team.
And, if that is just not possible (as I know all too well), you will have to become better educated about each of the TBD you already know you have.
And better educated about the things that can help you get through the rough patches, the "herxheimer" support, etc.
I dont' mean to sound accusatory but can't think of how else to phrase those things above. It's just a fact, not a judgement. There is so much to learn, though, and patients should not have to do so much to save their own lives as it's far better to have a good LL doctor to guide, if at all possible.
I wish the best for you but have to say that your experience has brought up such intense pain for the simiar searching and dismissals that it's still very hard to deal with it.
I know you are in a tender place. Take good care of yourself as you find your way. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
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: 96239 | 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!
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic