posted
So, several days ago I was at the hospital after I woke up feeling completely out of it (could barely talk with a temp of 93). The previous night I had bout of uncontrolled anger/rage/anxiety.
Now I am going in and out of this anxious state where I feel like I have to hold on to maintain control. There is no anger or rage, but the feeling of doom is extremely unpleasant. These states randomly go on and off every few hours or so like a light switch. Right now each "episode" lasts no less than a few hours. Klonopin/Ativan doesn't do much but occasionally it will stop these episodes. It's sort of feels like a partial panic attack, but not a full blown one where I get SVTs. Mentally I feel confused/altered and have trouble speaking sentences. The benzos aren't causing it, and I would be worse off without them.
I stopped all my antibiotics for Lyme/Bart as I can't tolerate.
Now has anyone been in this type of state after a herx? This is my second time, but this time it's even more stressful. I've been trying to get into the psychiatrist, but can't until Tuesday.
So my question is, what can they give me (if anything) that will mask this state if I am still in them by Tuesday? Benzos aren't cutting it. I'm hoping this will be gone by Tuesday, but previous experience has been about a couple weeks.
So, I may permanently stop the abx. The treatment is worse then the disease and I'm too weak to handle it. From what I read it sounds like Bartonella die-off.
I'm physically sick too, but it's hard to complain when the neuropsych stuff is overpowering.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
I use klonopin on a daily basis to keep a certain level of anxiety coverage in my system. It is a drug that helps more with anxiety than say a panic attack.
Klonopin is a slower acting benzo while xanax for example is a faster working benzo. I know when things get really bad I can use a little xanax to handle the extra to get me through.
Are you on klonopin on a daily basis?
You may also want to search for lymeherx001. I think that's the name. This poster decided to handle the psyche stuff so that her body could heal. Check her post out, it may help.
I hope this helps. It sounds like you are on overload and just need a break to break the cycle. I hope you get a brake soon.
posted
I get similar feelings. My belief is that it might be an overly congested liver, from all the junk we are killing off.
The liver is the seat of many negative emotions, and when it's not happy, I am not happy.
I have found that if I cleanse with a variety of methods, and support my detox, my mood stabilizes a bit.
Good luck!
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Are you also treating for bartonella? If you are just treating lyme it would stimulate the bart into high gear. Bart often causes rage, anxiety, depression and the feeling of being disconnected. But treating bart causes pretty terrific emotional herxing. Don't just take nothing. If you think you can't tolerate the abx at a lower dose, try herbs. Be sure to try something for bart like HH capsules or Cumanda or Jananese Knotweed. You have to take much more than what is recommended but some people have to slowly work up to it. I am treating bart right now and it is no fun. I was extremely anxious for a while. Is there anything you can do to help calm you? Maybe try doing some art for fun or something else that helps your mind to stop it's chatter and go into a more meditative state. That helps me.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Everyone deals with it different, but I felt like I
had no choice but to go to bed and wait it out.
When I got so sick I could not function/think/, I
backed off meds to half dose or stop a couple days.
It is horrible to be that sick, but you will figure
it out. Are you on thyroid also? Are you keeping
the electrolytes going in? Are you doing
something to prevent yeast? These were my worst
problems. Too sick to fix, so I made a jug of
electrolytes replacement to
keep by bed, and had pan for you know. With your
body temp that low a electric blanket may make
you feel better. Prayers.
-------------------- 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
Yes, I am (or was) being treated for bartonella. I was on Cipro and while I stayed on it for maybe 1.5 months. I had panic galore at first which was very scary, but I pushed through. I stopped because my head felt terrible. It felt like I had fried brain syndrome. Then I went on low dose Rifampin and a normal dose of Plaquenil, and a relatively low dose of doxy instead of ceftin. The first week I was feeling pretty good, then it knocked me to the ground.
I like my doctor a lot, but I think he thinks that I may be having anxiety because I fear the antibiotics. It's more the other way around. The abx give me severe anxiety and put me in a scary alternate reality. However, it's probably both now with the **** I went through.
He is a MD, and he did bring up the idea of treating with chinese medicine or herbal medicine. He said he could work with Dr. Z in NY and mentioned a couple other herbalists he has connections with.
And mazou, I am doing using liver cleanse supplements right now.
My body temp has been fine, however, I still feel cold. Doctor mentioned possibility of thyroid meds but my waking temperature is pretty normal. I'm exhausted but feel too anxious to stay in bed much of the time but also too ill to be moving around (as strange as it sounds). This causes more anxiety. Been trying hard to keep fluid up and electrolytes replaced. Drinking fluids doesn't sound good when I feel like this, so I kinda force myself a bit.
For yeast, I was taking Nystatin pills daily. I had yeast before starting abx. I am taking probiotics (not sure how much it helps with the yeast).
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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You were on alot of meds and it sounds like you have alot of die off going on. That alone could be causing these episodes. I have Bart too and my anxiety levels were through the roof when I was on treatment.
I think you made a wise decision to back off of meds. Let your body and liver heal. You may still get worse for a few days because the antibiotics are probably still in your system. Hang in there and drink water like someone else mentioned to get those toxins out.
Another idea would be ammonia in your brain from the toxic die off. Do a google search and read about symptoms of that.
-------------------- The advice I give, should not be considered medical advice. My opinion comes from years of research and experience. Posts: 233 | From Somewhere | Registered: Sep 2009
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Shosty
Unregistered
posted
Sounds good to back off meds.
I would consider anticonvulsants, because these episodes sound more like either partial seizures (temporal lobe, as they used to say) or some sort of complicated migraine-like episodes (minus the head pain). The feelings of unreality and doom, the anxiety, the confusion, and the trouble speaking all point to a seizure-like state (some of your symptoms are also typical of post-seizure states).
Maybe a neurologist would be better to consult than a psychiatrist, if these continue.
But any MD would have to understand that tick-borne illness treatments can cause these symptoms, either by riling up the bugs or through die-off.
Topamax would be a good med. But with your sensitivity, start at a very low dose, like 7.5 mg (half a 15mg "sprinkles" capsule).
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posted
Well, I tested positive at https://www.chronicneurotoxins.com/ for neurotoxins, and it recommends consulting my doctor about a drug such as Cholestyramine to bind them. The book mentions Welchol may be much easier to take (whatever that means). It was called a VCS test. I never had such as test before.
I took the test, because the book "The Lyme Disease Solution" recommended it. It was $15, and I tested positive in both eyes (not surprising since my vision just doesn't seem right).
I am taking supplements to bind neurotoxins, but does anyone here have experience with the drugs Cholestyramine or Welchol? I tested very positive in both eyes. I need my brain back.
Thanks everyone for your input!
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I haven't taken them but you may be able to find info in the search box feature. I hope it works. Let us know.
-------------------- 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 should have been taking ibuprofen. Did a lot more for pain and cognition than I expected. Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Kday,
Glad to hear the ibuprofen has helped you!
It also is a bit of an anti-inflammatory, which would help with the mental symptoms, also.
Personally, I would do a simple ZINC test, which can be an indicator that the KPU supplements Dr. K recommends might be helpful for you (especially zinc and B 6). Deficiencies in these two can really, really cause severe "psychiatric" problems. And, KPU causes the body to excrete too much zinc and B 6, leaving the person with major deficiencies. UGH!!
I find that taking extra B 6 when I feel the start of one of the mental scenes just stops it--right now!
You can do an inexpensive test on yourself by getting a liquid zinc supplement at a health food store. Pop about 1-2 teaspoons in your mouth, swish it around for a few seconds. If you don't feel the urge to spit it out because it tastes terrible, you're deficient in zinc.
Dr. K says that about 80% of his Lyme patients test positive for KPU. You can search here at Lymenet for his presentation about it, and other people's personal stories about this situation and their treatment.
Hope this helps!!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
kday~ Also get tested for HHV-6 (use focus Diagnostics lab). A good friend of mine had symptoms much like yours. They resolved with HHV-6 treatment.
posted
Kday, Your symptoms and lack of progress seem to mirror mine.
I have been using various abx for 6 plus years. I have conclusively tested positive for bart 2x through Igenex.
My symptoms are literally concentrated in my head. I have facial and cranial tingling and creepy crawlies that just won't go away. This sometimes develops into a full fledged panic attack and accompanying anxiety. Some occasional neck stiffness and calf issues but most head stuff.
When I take the right combo of abx (or wrong as the case may be), I have had severe reactions that have produced major panic episodes that are followed by 2 to 3 weeks of the state you described (impending doom, anxiety, conscious of breathing).
A common occurrence during these times is my fear of being stopped at a traffic light while driving. When I'm driving my mind is occupied and I'm totally fine; hit a red light and I become anxious (yes I've gone out of my way to make *yellow* lights to avoid this).
I'm an active runner and often during this period, I'm too scared to run.
The issue for me is that I just can't go off abx for any length of time. Currently I'm about 3 weeks off and yesterday the head tingling and creepy crawlies started to increase and I also became noticeably more headachy. I'm close to the point where I feel like I need to take some abx. I recently changed docs and they have me on the Cowden protocol, low dose naltrexone (to address the auto immune component) with various other supplements. They did prescribe doxy which I have never taken before (have taken plenty of mino though). They are proceeding slowly with prescribing mega abx because I've been down that road before and it doesn't get me over the hump (produces these reactions but I don't come out the other side feeling better).
So..my dilemma is that abx don't cure me but I seem to need them not to totally deteriorate. This really stinks and I am pretty down right now facing the prospects of returning to the abx roller-coaster.
I wrote down a number of things from posters above that I have yet to try and may address these with my LLMD in a few weeks at my next appt.
Cholestamine VCS Test HHV-6
I wish you luck and feel free to PM me if you want.
Chris
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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I've been taking zinc along with a lot of other stuff for detoxification. The liquid zinc sounds interesting. I used the same method when I was potassium deficient and taking liquid potassium (although if the potassium doesn't taste bad, you aren't deficient). I'm confusing myself now, hope I got that right. I'll see if I can pick up some liquid zinc. I don't take B6 specifically, but I have a B100 complex that I haven't been taking lately. Would that be adequate?
Timaca
I was equivocal for HHV-6 IgG through LabCorp at 1:20. Negative is less than 1:20. I was tested before all this weird brain stuff was going on, and before I started antibiotics. I am negative for EBV and HBV, so the titers are probably of high specificity (or so I read).
I talked with my mom and I have had sixth disease as an infant (in other words I was exposed to HHV-6 or HHV-7). I would guess HHV-6 based on my titers. I read nearly 100% of the population has been exposed.
Could it be of benefit to test for re-activated HHV-6 IgM through LabCorp? My medical bills are stacked high, and I'd rather use it as much as possible before next year.
Everyone Else
Thanks for your support, and it's nice not feeling alone going through all of this. I'm still feeling a little aftershock from the antibiotics, but I am much more stable now.
I tried to see a new psychiatrist that my therapist recommended, and it didn't go too well. He spent a lot of time with me, and was very nice, he just had no idea what to do with me after looking at my chart and records and talking to me! At the same time, it's hard to blame him, because my symptoms are anything but consistent, and how do you treat one whose symptoms change on a weekly basis? I actually felt a little bad for him. He really cared, but didn't know where to start. I think I scared him, but I didn't mean to!
He did give me some samples of Zyprexa (for night) and I will remain on benzos, but I think I will see my normal psychiatrist again before starting anything new. I feel like I am pulling out of this anyways. Too little help, too late? Oh well, I'm alive!
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
A new medicine made me feel this way. It has been 3 weeks (4 days in the hospital) and I am just now getting better. That feeling of doom and anxiety. For me it was caused by a drug called Abilify. I thought I was going to die, no joke.
I caution anyone taking that medication.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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posted
I get that feeling almost daily once the abx is in my system good. Right about time the afternoon crash sets in I feel completely defeated. Can't think straight, barely talk, hand won't work the mouse or remote...
couple of hours later it clears up and depending on how the rest of my day went my mood does as well.
Once off the abx this goes away and I feel human again, then slowly get to where I can't think straight, hands, etc, but the emotional distress doesn't hit the same.
In my case I'm certain it is either Lymes die off in my brain or the abx itself. As soon as I'm off, the mood (or lack there of) goes away.
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
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posted
Kday, i take cholestryamine and its good with orange juice. I wouldnt drink it any other way, but for some, this may not work.
It does help clear the toxins out, and 2 people from my Lyme Support group (1 a LLMD) said it clears out neurotoxins and all toxins really.
I know the post-seizure state well...i was mis-diagnosed with epilepsy for 2 years, and the anti-epileptic drug really helped me sleep, but the neurotoxins were still kickin my *ss!
Now I'm better on Clarithro, Augmentin and Flagyl, 6 months into treatment. I still have periods of the day when i feel like i'm having an simple partial seizure (where only 1 part of the brain freezes), but it used to be entire days were spent that way.
I use Cholestraymine, Chlorella, Milk Thistle, Burbur Extract, Water, Epsom Salt Baths, and Sauna--all for Detox. And i did acupuncture 2xs per week until i couldnt afford it.
Hugs, and you will get through this.
Posts: 123 | From Minneapolis, MN | Registered: Jul 2009
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posted
Well, I saw my regular psych today, and she gave me samples of Geodon (an anti-psychotic). I told her I was a little afraid of psych meds in general since the only positive experience I have had with them was benzos. She told me no need to worry. I did feel good about things after leaving the office.
Well, I don't like playing with fire, and after reading adverse effects and patient reviews (which she advised me not to do), I'm not sure if the risk is worth it right now.
The med has a black box warning and can cause life-threatening heart arrhytmias among other things. I already have heart arrhythmias and SVTs.
She recommended consulting with neurologist to make sure the 1.2 cm lesion by the left temporal lobe in my head couldn't be causing this stuff. She still really wants me to do an EEG too.
So, my thought is I see the neurologist, do an EEG (which requires going off benzos), and then figure out what to do.
I want some symptomatic relief, but when they offer these drugs, the unknown scares me a little bit. Am I just being irrational?
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
No, I don't think you are being irrational. These drugs are powerful and need to be prescribed by someone who knows them cold. But it does take a week or so to figure out if they are helping. You should see the countless boxes of drugs I have tried to no avail. It takes time and trial and error to hit upon the right combination.
I take daily doses of Risperidone to help with anxiety. I have been seeing the same psychiatrist for years and that helps a lot. She understands LD and supports me...sounds like you need to find someone like her, someone who understands lyme.
I have not had much luck with neurologists but my LLMD seems to understand brain problems very well. He assures me that in time they will resolve themselves as the abx do their job.
My spect scan showed significant hypoperfusion. That may explain my problems with speech, memory and confusion. I also have unbelievably horrible and creative nightmares.
I often awaken with those awful feelings you describe. I try to find things to take my mind off my misery. Even a nice warm bubble bath helps! Change of scenery does, too. My husband will often bundle me up and just go for a short drive. That helps so much!
Do you have an infrared heat lamp? It is very comforting when your temp is too low.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
Well, at noon I turned from a zombie that thought I was dying, to my complete normal self. I was out to eat, I had no appetite, didn't want to drink anything, wasn't speaking, etc. All I could say was take me to the hospital. These feelings were persistent all day.
My mom told me "I think you're just stuck in one of your episodes. Take an ativan." I responded in a very agitated fashion yet lacking emotion that I am not supposed to take more than prescribed (and I had taken more than prescribed on my worst days). I then thought to myself, screw it, maybe it will work this time (though I wasn't counting on it), and maybe I am not really dying. 30 minutes later, like a switch was flipped, I was mentally completely normal. My emotions were back, I felt happy and talkative rather than quiet, expressionless, and agitated. I was surprised that the extra dose actually rescued me because it seemed to do little other days. I took my normal dose for the rest of the day, and I still feel the same! Mentally, I feel pretty alert (I felt safe driving a car today).
Based on how I feel tonight, I don't think I need anything powerful to knock me out. I think I can handle this one myself. I'll cross my fingers.
That being said, I am not sure why she prescribed me geodon. She is not Lyme literate, but by cooincidence, her best friends husband has Lyme, and she does understand the complexity of the disease and how difficult it can be to treat the symptoms. I do like her, but I wish she gave me more of an explanation on why she thinks geodon is for me.
If it were up to me and I could grab any drug off a shelf (and I'm not a doctor so maybe I am wrong), I would probably choose an anti-convulsant first since the side-effect profiles are generally much better than anti-psychotics. If that doesn't work, maybe try an anti-psychotic.
I used to be one of those people passive in my treatment. I guess I just trusted people to make the right decisions for me. I've realized that I need to take an active role in my treatment and understand what is going on as well.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Kday,
Geodon and other antipsychotics have the worst adverse effect profiles. They have multi-billion-dollar PR machines in place to get them prescribed to millions of people.
NAMI (National Alliance for the Mentally Ill) was forced to disclose that they get 2/3's of their funding from drug companies. A member of their board just resigned, as the conflict of interest is too great--NAMI HAS to promote drugs!
Unfortunately, investigations instigated by Congressman Chuck Grasselley have revealed that psychiatrists are, by percentage, the largest receivers of drug company $$$$$$$$$.
That a psychiatrist told you to disregard warnings is in direct violation of your right to informed consent.
As for the B-6, I was reviewing the article I found through Lymenet regarding nutritional handling of seizures, and, according to that article, 100 mg of B 6 is NOT enough. This may keep the seizures down, but will NOT be enough to stop brain cell death and other nasty effects.
You could also take P5P, which is the active form of B 6 and is recommended by Dr. K as part of his KPU protocol. As I recall, his reasoning on this is that some people's systems don't convert the chemical we take as B 6 to its active form, or at least not enough.
Personally, I take both!! LOL!!
And, I'm going back up to 200 mg of B 6 a day, after re-reading this article myself!
PM me, and I'll send you the article. I found it posted here at Lymenet.
Best,
Cass A
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Shosty
Unregistered
posted
The lesion on your temporal lobe sounds like a very probable source for all this. I would pursue that as a priority.
Your symptoms really do sound like temporal lobe epilepsy (which could, conceivably, be aggravated by antibiotics).
Once that matter is cleared up (what is the lesion, exactly?) then you can see a really good neurologist to treat.
Some of the anti-psychotics and/or anti-convulsants are godsends to people, mostly people who have no choice but to try them, regardless of side-effects.
I get really scared by all those list of side effects, and sometimes a family member does actually get one, but overall, they are rare.
Taking something that you really need,for a problem like this, is a lot different than popping anti-depressants to feel a little happier. NAMI may be tainted by ties to drug companies, but members also know how important these drugs can be to themselves or loved ones.
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posted
So, 2 psychiatrists really, really want me to do the EEG thing. I called my doctors office, and I couldn't visit until february! I didn't really like her anyway. I got a call back saying they can do a video EEG or ambulatory EEG (I don't understand the lingo), but I believe that involves going off the benzos (the reason I didn't do it in the first place). I found another neuro that can see me monday that is close by and can do an EEG before the end of the year. I scheduled an appointment for monday.
So here's the problem: I get horrific panic attacks (SVTs and all), and the benzos do prevent and stop them. No, they do not always adequately control the other feelings I get. It sounds like they want me to hang in there for 48 or 72 hours resisting gabanergic drugs during the test. If I get it done by the end of the year insurance will cover it. I really don't want to but I guess it's best to do it. If I am able to hang in there for any length of time, I'm sure they will see my brain is screwed up, but if a panic attack ends the test it would probably just be inconclusive. If the panic comes, it doesn't leave on its own for hours. There is no injury/broken bone or anything that is more terrifying than one of my panic attacks.
Would I risk losing my drivers license doing an EEG?
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
All I can say is the first month I thought the Abilify (antiphyscotic) was the answer to my prayers.
The next month I was in the hospital for 4 days and I thought I would die. I have never felt like I wanted to kill myself before, but the inner torture this medicine created for me was unbearable. It made me pyshcotic.
I rocked and shook like I had Parkinsons. I could not relax my muscles. I have never had anxiety. And the anxiety I had had me walking in circles crying.
I will never take another. I am having withdrawls now and I have been off of them for 7 days. When I read wikipedia it said this drug "attacks" the CNS. I wish I never had taken it, I wonder if I will ever get back to normal.
Good luck, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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posted
Thanks everyone. I've been doing better and haven't needed the anti-psychotic and been sleeping fine. Still on benzos of course. Our family always seems to get rare diseases or rare reactions to medications. I don't think I will be feeding that stuff to myself anytime soon.
Had first panic attack in a while today. yippee! Honestly though, I was trying to learn how to play a song on the piano and wham! Hopefully I'll be able to cut back on these benzos soon, or else no refills for me, and they will let me suffer with SVTs and stroke range blood pressure. It's a wonderful country to live in.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
When I feel ok, I'm optimistic and happy. When I don't feel ok, I'm pessimistic and irritable. I was trying to figure out why the psych gave me Geodon of all things, and I think she thinks I'm bipolar since I can be cognitively functional and feeling ok one day, and completely miserable the next visit. I like her, she means well, and she understands that I'm ill, but I don't know if she completely understands what's going on; nor do I.
Anyways, on a positive note, I picked up sublingual methyl B12. I've read that with the right mega dosage (I took 2000 mcg tonight), your body is able to absorb a small percentage of each dose. My doctor wanted me to take shots, but I didn't like the idea. Well, maybe it's just a placebo effect, or just the fact my symptoms change so rapidly, but I had quite a bit of energy after taking the B12, and my brain feels clearer. It's not an anxious type of energy either. Just the opposite! The effects seemed to take place in the matter of minutes, if that's possible. I am taking Jarrow Formulas Methyl B12.
When I had my B12 checked it was within normal range, but resources I have read said that even though I was in normal range, it is low normal.
I'll report back if the B12 continues to work. If so, it will be the first supplement where I actually have positive effects when it comes to cognition. B100 complex seems to do nothing, but I will continue to take it as maybe it has synergistic effects?
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
I had a better day today. I felt pretty good actually. Not too much to complain about.
Saw the new neurologist. He ordered an EEG, but said, "eh, looks like panic disorder to me." I have a small 1 mm bone-island type lesion of the skull, and a 1.3 cm arachnoid granulation. His overall impression was that these are completely benign (they aren't MS type lesions or anything like that).
Two psychiatrists question whether it is just panic disorder and told me I need to go back to a neurologist, so I told him I feel like I am being thrown around like a bouncy ball, and asked him what he would do if he were in my situation.
He did end up ordering a 48 hr EEG. I asked for a SPECT scan before the end of the year, and he asked me why. I said to see if there is hypoperfusion. He didn't think it was necessary to order it. I'll ask again when I go to their office and get hooked up for the EEG.
I think the fact that I have been making significant progress in cognitive function day to day makes me think there is/was encephalitis going on. He seemed to ignore this notion; maybe because I looked well today. I didn't feel like I did a good job explaining my situation.
I really don't like doctors now, and I hate being thrown around. They have no clue what to do with someone like me.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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