posted
Just to note for the record: Ema's LLMD outed herself a few months ago on national television. She used her real name and talked about her job as an LLMD.
So I don't see what the big deal is now, why the LLMD won't answer the phone when the hospital docs want to consult about a patient.
Plus it is California where LLMDs are better protected, at least that is my understanding.
I just don't get this LLMD; she doesn't need hospital privileges to honor a consultation request from other doctors.
It is all crazy.
Ema, I am praying for you. You are going to make it through this .
Posts: 331 | From West Coast | Registered: Jan 2012
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posted
I hope you're right, canbrave, since I was CDC positive, an infectious disease doc did the Elisa C6 test several years after my bite and of course it was negative. Just saying, if the docs are interested in actually treating ema or if they are just interested in perpetuating the IDSA myths about lyme.... Ema , go for the Burrascano test. HAVE A BETTER DAY THAN YESTERDAY! Prayers to you and your family.
Posts: 482 | From Oregon | Registered: Feb 2011
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quote:Originally posted by OtterJ: [QB] The Western Blot is the most accurate, but they need to repeat the ELISA and the Western blot
together. There are many reasons why the test might appear negative when you have an active
infection. The Elisa and Western Blot together constitute a 'CDC positive' test. My Elisa was
indeterminate (not negative) and the Western Blot had enough bands one of which was 41 Kda. Both
tests test blood, but lyme travels about on nerve pathways. Lyme can travel to the ears where the
baroreceptors are for the body that regulate blood pressure and that can impact the body's
blood pressure. If the test is the improved ELISA, it is not improved and the further away
from initial infection, the less reliable it is.I will look for the case site for this and hyperlink it .
Then why are you recommending it??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If one had been diagnosed with lyme, they do not need repeat testing. Repeat testing for lyme is not necessary. If diagnosed and not treated adequately or not yet reached remission, it's still lyme.
Now, there may well be other things, especially other TBD to consider but lyme is not just magically going to go away because we get frustrated that it's taking so long.
There is no test that will prove lyme is cleared. That comes from a good strong remission.
Still, it's usually never JUST lyme. And every good LLMD knows that.
Now, after several years of adequate treatment, the ADVANCED LABS CULTURE test may be of help to sort out remaining symptoms but, even then, it cannot rule out lyme.
As to why the LLMD in this case has not been involved in the hospital care, there are many reasons for that and things that we just can't know.
It's a sad situation, of course, but there is much that we just can't know about this particular situation so it's best for all to hold judgement - even if California has certain laws, some LLMDs have been harassed. It's not all the clear cut.
There may be others reasons that we also do not know about.
For those with a LLMD or LL ND, it's good to have a conversation about the scope of their practice for such times. In advance. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
As for Lyme testing, you better show the hospital (or that med student) the bill that was passed in Virginia.
"The groundbreaking law requires patients to be notified that a negative Lyme test doesn't necessarily mean they don't have Lyme disease. "
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"Still, it's usually never JUST lyme. And every good LLMD knows that."
I agree. It's never JUST Lyme. I tested positive for 11 co-infections & treatment plans changed accordingly.
At Stanford hospital, they have a chronic fatigue specialist. Here's the lab requisition that they use for patients (click on "fill online" to see it):
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Just be careful around the test results. If what they're doing comes back positive, fine. But if it comes back negative, they need to know a negative test result does not rule out Lyme. Including the Advanced Lab one in PA - a negative result could mean there were no bacteria in the sample.
When I had a positive Western blot, a rheum sent out for an ELISA, which came back negative, so then he said good news, you're negative, and I let him have it and then went out and educated his staff! I was newly on clindamycin and had no more pain after 25 years of fibro!
You could keep talking with the medical student who thinks you have Lyme, just to keep educating him. He sounds like he's open to learning.
Last thing - I said above that the doctor should be talking with the hospital, but it's true - we really don't know the reason why the doctor hasn't talked with them. Could be political/legal.
Posts: 13116 | From San Francisco | Registered: May 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Ema, please try to get contact info for that med student.
You may need it in the future.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Haven't been on lymenet for a month or so and your post was the first one I saw when I logged in. I read about half of the responses and will read the rest soon.
Since flagyl was the trigger for your movement disorder my guess is that you have babesia or a similar bloodborne parasite and that is what needs treated right now even more urgently than the lyme.
Hubby had many different movement disorder symptoms over the years of his illness including the head shaking that you describe. If the shaking continues in your sleep then it is not Parkinson's. Also it is doubtful that it is seizures either.
My guess is that the babesia or whatever blood borne parasite you have is either causing brain inflammation and/or a lack of oxygen to the brain and that is the true cause of the movement disorder.
It does sound like you have POTS or dysautonomia which does need treatment due to your severe blood pressure fluctuations.
But I think the movement disorder issues are not from the POTS since they do not stop and are not triggered by standing or sitting up.
Valiam, Ativan or Klonipin may help.
If you have not been tested then I would be sure to get tested for all types of babesia including WA-1.
If the hospital can do it then a brain SPECT scan would be very helpful. It could show the severity of your brain inflammation or lack of oxygen.
There are 2 different things I can think of that helped hubby probably as much or more than any meds with bloodflow to the brain. At different points in time each of these things really made a significant difference in his ability to function.
First is lumbrokinase. Any infection and especially lyme and tickborne diseases can cause hypercoagulation or thick blood. Other enzymes which work in a similar manner are wobenzyme and nattokinase. Also the medication heparin.
Second is high dose niacin -- the kind that makes you flush. Hubby did not even flush until he was taking 200 mg per dose which is a very high dose.
I would suggest taking very high doses of vitamin C, CoQ10 and fish oil. You need antioxidants which cross the blood brain barrier and also the good fats to help your brain heal.
Have your parents call your LLMD to discuss babesia.
I am very disappointed in your doc for not at least talking to the hospital docs.
Hope you are feeling a little better.
Hubby had various tremors and seizure like spells for about 8 or 9 years and they went away for over a year with very aggressive babesia treatment. But then he got 2 more tickbites and it was downhill from there.
I know you are scared, but don't give up and don't let any doc tell you that your movement disorder is due to anxiety. That is what they will say if they can't figure it out -- so don't be surprised if a psych consult is suggested.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I have been reading all the posts and just wanted to say I'm keeping you in my thoughts and prayers.
I suffer from tachycardia and found improvement with the use of a beta blocker and Xanax. I don't suffer nearly to the degree you do, but by calming your heart and the feeling of "dread" down will hopefully help you quite a bit.
Be sure to find a good cardiologist to work with for the beta blockers. I've never been tested for POTS, though I suspect I have it.
My blood pressure is extremely low and beta blockers will lower it farther. We had to play with quite a few to get the meds right and stabilize my blood pressure. I suffered from fainting spells, black vision and all kinds of craziness until we did.
I will keep you in my thoughts and prayers for a speedy and full recovery. :-)
Posts: 132 | From Central New Jersey | Registered: Feb 2012
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
FWIW, I'm completely on board with Bea. This would be Babesia in me. And monotherapy just stirs it up. It isn't enough to resolve the infection.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ema,
I'm so glad that Bea (seibertneurolyme) is back. I'd been hoping she could offer advice and she really knows what she's talking about (as does BoxerMom who agreed with her).
[Not to discount others, of course, as you have some very good input from many.]
Immediately, though, I hope you can take Bea's advice on action required. Words cannot express just how extremely well educated and experienced she is all all these matters, including hospitals.
and
Bea,
So glad to see you here. Missed you. Good cheer to you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Emma -- you said your head CT was normal. That does not rule out brain inflammation or encephalopathy or meningitis.
An MRI would be the test which would show brain lesions -- not a CT. Actually even a normal MRI would not rule out brain inflammation or encephalopathy or meningitis.
Since you only have headaches and are not complaining of extreme sensitivity to sounds and light then you probably do not actually have meningitis or encephalitis.
Most lyme patients have varying degrees of head pressure type headaches. That is how the lumbrokinase and niacin helped hubby. They actually did not have much effect on his tremors and myoclonus and seizure like spells.
A spinal tap is not a good test for lyme and I don't think it would be very helpful in your particular situation.
But a brain SPECT scan could be very useful -- but it would depend greatly on how well informed the radiologists were who read the test results.
Please follow-up on treatments for your POTS symptoms and continue searching for answers once you get home.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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The doctors did their best. My lmdd actually tried to call them back today, but i guess no one picked up at the hospital or the number was wrong.
I have pots so they gave me beta blockers. they did lots of tests at the hospital everything is normal.
I am thinking of doing the lyme culture test. I want to know If have lyme disease for sure since I still have no clue. got some postive bands through igenex, but how accurte is that?
Never have my white blood cells been high or low. I know lyme doesnt effect the white blood cells. But I really want to be sure before i put chemicals (antibiotics) in my system. Flagyl I think messed up with my nerves, and I really have a messed up nervous system.
I am still feeling the same. head is still shaking.
Beta Blockers helped with the heart rate and made it s little easier to walk today.
I went through very stressful events in my life, and I think that triggered a lot of my symptoms... from house shooting, physical and sexual abuse, and constent pressure from my parents. I think that played a big role but that made me a much stronger person.
I am not giving up, I am putting nursing school on hold right now.
I want to remove all the silver fillings from my teeth ( I have 10).. really big ones
Thanks everyone for the help, and if you guys have any suggestion i'll really apperciate it.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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posted
before I left the hospital the medical student told me our testing for lyme disease is never accurate especially in late stages, so it's possible that's what is causing your health problems.
I should of got his contact infromation. He took my phone number to tell me the results of the lyme test when it comes back. He was such a caring person always checking on me. It made my hospital stay less painful.
In one year he's going to be a head, nose, and throat doctor. I hope one day when he comes across someone with similar symptoms as mine he'll consiser lyme disease.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by luvema: I am at home. they discharged me.
The doctors did their best. My lmdd actually tried to call them back today, but i guess no one picked up at the hospital or the number was wrong.
I have pots so they gave me beta blockers. they did lots of tests at the hospital everything is normal.
I am thinking of doing the lyme culture test. I want to know If have lyme disease for sure since I still have no clue. got some postive bands through igenex, but how accurte is that?
Never have my white blood cells been high or low. I know lyme doesnt effect the white blood cells. But I really want to be sure before i put chemicals (antibiotics) in my system. Flagyl I think messed up with my nerves, and I really have a messed up nervous system.
I am still feeling the same. head is still shaking.
Beta Blockers helped with the heart rate and made it s little easier to walk today.
I went through very stressful events in my life, and I think that triggered a lot of my symptoms... from house shooting, physical and sexual abuse, and constent pressure from my parents. I think that played a big role but that made me a much stronger person.
I am not giving up, I am putting nursing school on hold right now.
I want to remove all the silver fillings from my teeth ( I have 10).. really big ones
Thanks everyone for the help, and if you guys have any suggestion i'll really apperciate it.
I'm so glad that you are home now! However, I don't understand why they didn't give you Klonopin, or a similar med for your head shaking. Not to mention IV magnesium. HOw is you head shaking now?
Sleep, finally, should help.
What you said above about all the pressure from you parents, abuse, home shooting, etc.----whew, the stress of all that could cause, or add to, all kinds of symptoms!!!
It sounds like, among other things, you could use both a med to decrease the overload from all these stresses, and low/no-cost therapy to help you process it all. There are ways to got low or now cost therapy---through local clinics, hospitals, etc.
Posts: 3771 | From around | Registered: Mar 2008
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
That med student sounds like a gem. It is encouraging to hear that he will be one of the mainstream doctors in the near future. I hope you get his number and tell him how much it meant to have someone like him caring for you. Perhaps you can use him in the future.
Happy you are out of the hospital and feeling a little better. I hope things start to settle down for you after all you have been through. Hugs.
Posts: 2386 | From New England | Registered: Aug 2011
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You say you got some positive IGeneX bands. Could you post them here when you're felling up to it? We can discuss them here. In general, you can take it to the bank, so to speak, if you have Lyme-positive bands.
Posts: 13116 | From San Francisco | Registered: May 2006
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I finally got some sleep with no vicodin and sleeping meds.
The head shaking is still the same. Now I am able to walk a little better.
Robin, I will post the results of the igenex test later today. I need to look for the paper !
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I'm so glad to hear you got some sleep. Sleep is a game changer for me.
Since you were just an inpatient, they could probably give you the name of that student doc. What a good guy. God bless him. We need more like him.
The stressors you have survived no doubt play a roll, imo. We can only take so much. I pray for a complete healing for you.
Rest and be well.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Did they measures porphyrins in any way: urine, blood, stool? All ways are best for an accurate work-up and samples must be kept in the dark, even during collection.
Genetics, Infections, Mold, Certain Rx, Chemicals and even Scents can trigger an attack.
You might want to consider a full porphyria workup (although testing is not always accurate, especially if not during an attack) -- even with clear tick-borne or other stealth infections, porphyria could account for this attack and symptoms.
And, if porphyria is involved, you would have a better idea of which treatments would be safest and the liver support methods required (and environments to avoid) to help keep porphyrins to a safe level. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"Since you were just an inpatient, they could probably give you the name of that student doc. "
Ema, maybe you can be a nurse in his office one of these days. Posts: 2839 | From California | Registered: Jul 2012
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posted
Good to read you got some sleep finally! What an ordeal you went through.
Will you be able to make an appt to see a Lyme doctor? It would be nice to see you follow up with someone who could make sense of what you're dealing with.
It'll be interesting to see if your symptoms subside, 'cause if so, that'll show things got stirred up by factors, as yet unconfirmed, that preceded your hospital visit.
If you get back to your "normal," it might be interesting to test any of those factors in the SMALLEST way possible to see if they start to induce any of your symptoms,
and then you'll maybe know more about what can set you off, and then you try to avoid those factors as much as possible.
Posts: 13116 | From San Francisco | Registered: May 2006
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I 100% agree with Gael, Parasites !
So sorry your going through all of this. Unfortunately, they can test you from head to toe, but they won't find anything.
POTS was one of my very first symptoms. It's much better now, but not gone.
I would ask for some Pain Meds. NOT Muscle Relaxers like Flexaril. I would think your CNS is being overstimulated causing the muscle Jerking. Therefore Flexaril or other muscle relaxers won't work. Give it a try and see if it calms you down if you feel comfortable with it.
Hang in there, but perhaps, refocus your treatment when you get out. The biggest mistake of most LLMD's, including the one I had, is they don't address Parasites. This was a major setback for me.
Your not dying ! I know your scared and uncomfortable, but try not to add fear to the fear. Just my 2 cents
((((Hugs))))
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
that muscle twitching thing is more common over here in europe with lyme. Lots have these uncontrollable movements with lyme. Different lyme strands from the U.S. types. (that is why doctors wanted to do spinal tap I guess, for neuro lyme but that test is not accurate either)
Posts: 366 | From Europe | Registered: Nov 2008
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
You know, I wonder if Ema picked up this strain in the Middle East...
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
I think I did.. the only time I remember seeing ticks in my life was in the middle east.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Ema, It's very important that your LLMD knows this; I assume you've mentioned it?
You might also contact www.ilads.org , and ask them whether they have any physician members in the Middle East -- and then see whether you can set up a consult via. phone or Skype, if you have no plans to visit that part of the world in the near future...
Best,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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That's interesting - do you remember when you first got any symptoms?
If it is from the Middle East, then it would be a good idea to research what kind of strains and symptoms show up from there, if possible.
Posts: 13116 | From San Francisco | Registered: May 2006
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