posted
My brain slowly coming back... I think. No sense of normalcy yet, but improvement nonetheless.
So, I stopped treatment a month ago or so because I couldn't handle it. The symptoms that bothered me most were a mix between cognitive (such as confusion) and neuropsychological. I say neuropsychological instead of psycholigical because the symptoms (indescribable amounts of anxiety with feeling of doom) have improved a lot since stopping the antibiotics, and are still improving. I think I had something like encephalitis or something similar that really messed up my brain. It was pretty bad and I am still recovering. Most days are a slight improvement.
I've been having weird symptoms lately (or maybe for a long time), probably involving the autonomic nervous system. I went to a sauna facility, and I couldn't sweat. My doctor referred me to an ANS specialist, and while the facility/clinic looks neat, I'm just sick of doctors and the testing (especially the "mainstream" ones that care about nothing but their pocketbook). I'm not sure I don't know if I really want to go at this point. Everyone just wants to drug me numb. They all just throw me to another doctor or try to convince me that I'm the source of my problems. When I was at my worst, I thought I was stuck there and just wanted to be numbed up with painkillers, antipsychotics, or whatever would stop the pain. As soon as I got in to see the doctor is when my rational mind started coming back, and I realized that I didn't want or need a band-aid. However, I have received a prescription galore of band-aids, all being untouched, aside from the benzodiazepines. Some say I resist treatment, but I'm not resisting treatment, I am resisting symptomatic management with medications such as powerful, but potentially dangerous mind numbing drugs (i.e. antipsychotics). I am not against pharmaceuticals, but I lean more towards nutraceuticals, and some drugs just cross the line for me. I wasn't against antibiotic treatment, as my N.D., amongst others, encouraged it for Lyme.
Overnight, one year ago, I became exercise intolerant with constant heart and blood pressure problems. I brought in a list of probably 50 other symptoms, and my doc was quick to call me crazy (though she used kinder words sometimes like psychosomatic). I'm not sure why I kept going back to her for a while. She was very mean to me some days. I get the chills and feel like I am coming down with the flu every day it seems. Body temp normal most of the time, including mornings. I've had all the typical testing and then some. I have a few abnormalities here and there, but "nothing that I should be worried about". My heart hasn't behaved like a 23 year old heart in a year, but according to the fancy equipment, it's still healthy! It just runs a little fast most of the time and doesn't recover to my normal resting heart rate after exercise. Oh, that's just a PVC. And that one, a PAC. No big deal according to Mr. Cardiologist. It won't kill me, it just feels like it will. Potassium/Sodium often borderline normal, or below normal, but that's no biggie either since it's not low enough to kill me. Diet recommendations from most docs to correct imbalances such as sodium and potassium: none.
I have a lot of medical bills despite having insurance. I am usually cold, but for the first time in a while I had some short hot flashses. My upper gastro is very bothersome, and some nights I have been throwing up meals to relieve the pain and pressure. This helps to somewhat relieve the anxiety associated with it too. Diarrhea isn't a problem, but constipation is. A little extra magnesium keeps my bowels moving.
I like my LLMD, but I am not good at communicating all my problems when seeing doctors. I tend to only remember the things that bother me most, and put aside everything else like it's not big deal. He now questions himself whether Lyme is the cause or if there is something bigger going on. I still quietly question Lyme too. I am CDC+ IFA/WB through Igenex, but never had anything tested through a convential lab but an ELISA test (which was negative). I don't know how much I trust Igenex and their testing, but it's all I got. I was one to herx quick (with low grade fever), which gave me more confidence in the diagnosis once the disturbing neuropsych reactions calmed down a bit. I was doing ok while on Ceftin. I also took Cipro for a while, but thought that may have been the medication messing with my brain. I switched to Doxy, Plaquenil, Rifampin, and within a few days, it felt like I was once again hit by a train, only this time with much more force. Like before, my mind was so messed up. I went to a hospital one morning with hypothermia and confusion. Of course my chest hurt, my muscles hurt, etc, but telling the E.R. so many things makes them lose focus. So I told them my most prominent symptom. My heart was bothering me, and my electrolytes were off, but the E.R. docs can't handle more than one complaint at a time in my experience, so they didn't hook me up to the ekg monitor. The day before seemed like nothing but a scrambled up nightmare. I don't want to be there again.
Since antibiotics feel as if they are causing much more harm than good, I almost hope that it isn't Lyme and this period in my life will pass.
Ironically, I know a very kind, funny man in his 80s that had Lyme 20 years ago. He acquired it in West Texas. He happens to be fighting cancer right now. According to his wife, he was sick for a while, and at one point he was treated IV for sinusitis. If I have the story right, I believe his diagnosis of Bb was made from microscopy. She told me he did not do well on orals and had similar neuropsych reactions as me (as well as seizures). She told me go I.V. and forget the orals. He only got better with I.V. This was comforting as my Lyme doctor said I wasn't fitting the typical Lyme picture.
So, now I am more interested in getting checked for KPU. I know I ranted about not liking doctors, but this doctor treats ADD and Autism with protocols similar to Dr. K's, and they test for heavy metals and do chelation therapy. They are only a few minutes away, so even if the appointment doesn't go well, my time isn't wasted. Of course, as I expected, they don't take insurance since they are more about natural treatments and protocols then prescribing pharmaceuticals. I asked my LLMD if he could test me, but I don't think he is too interested in doing that, nor do I think he has much knowledge about heavy metals or KPU protocols. Maybe he just thinks I am nuts since I loaded his office with medical journals and review articles about KPU (he had me buy a lyme book, so it was only fair). I respect the fact that he wasn't going to blindly test me for something he doesn't know much about, but at the same time, I will find someone who has the knowledge and is willing to order the test for me.
Sorry for the long post and my negative energy I emit. I'm not sure if what I typed was negative since I haven't reread it, but a lot of negative energy was released nonetheless. I am working on minimizing negative energy out of my real life. I am just another person suffering from chronic illness, and I am trying to make this my release. Maybe I should just write a book.
-Kyle
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Wow, I'd say your brain is coming back.
Some of your symptoms might be eased with nutritional supplements What are you taking now?
For your upper gastro symptoms, look at d-limonene.
Are you taking magnesium and fish oil? This may help the symptoms of anxiety.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Tincup
Honored Contributor (10K+ posts)
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posted
I have no clue what KPU is?
My suggestion, however, would be since you feel better stopping all meds ... stay stopped for a while until your body gets more regulated and back to normal.
The kinds of meds and the combos you were taking are VERY hard on a body. Ruthless.
I would ... if it were me ... reassess my condition (list of symptoms- all of them this time) and see what jumps out at you.
Then go after that ONE thing slowly and easily... not with a cannon and a death wish to all germs.
I am NOT a doctor.. and this is NOT medical advise.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
kday, I'm sorry. I know your pain and frustration. I just gave up on specialist. I'm blessed enough to have my PCP Internists doc that has been with me from the first day.
He was at least knowlegable enough to dx Lyme Disease and kept the abx coming. He knows more than the average doc. Since 99 he's been educated by me. He knows I'm crazy, but my crazy is finding my life and health again.
We've been where you are now. Mad at the tradional med view. How could this happen in '09?
The truth will come out soon. I must believe that.
Take care, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
kday said:
quote: Overnight, one year ago, I became exercise intolerant with constant heart and blood pressure problems. I brought in a list of probably 50 other symptoms, and my doc was quick to call me crazy (though she used kinder words sometimes like psychosomatic).
and...
quote: I went to a sauna facility, and I couldn't sweat.
plus...
quote: I am usually cold, but for the first time in a while I had some short hot flashes.
These are all symptoms of dysautonomia, or dysregulation of the autonomic nervous system. I suggest you read up on it at www.ndrf.org.
A visit to the autonomic specialist might not hurt. You can at least hear what s/he has to say and then decide if you want to proceed with any suggestions.
You will find lots of suggestions at the website I included above.
Good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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randibear
Honored Contributor (10K+ posts)
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posted
man, the way you're writing you must be doing something right.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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I had lunch with my best friend today. He is in town for the holidays. I had a really tasty, wholesome, tofu/veggie dish, but as usual, my GI system didn't reward me for eating. I'm belching away, and I don't think my body cares too much about digestion. I'm not really sure what it's trying to accomplish, but I figure it's best to keep it down to absorb atleast some nutrients. It's snowing here in TX, and getting in and out of the house and car in the cold weather is bothersome as well.
My friend needed to pick something up from Walmart, so I went in with him. I wasn't feeling right, but was trying to hang in there. My head was hurting a bit and my world just didn't seem right, yet I didn't know why. Suddenly, while in the store shopping, it felt like I was dipping out of consciousness, and I was ready for the ground. This was acute and only lasted 5-10 seconds. I'm not sure what happened, but I made sure not to panic. I feel like the rational response would have been to panic, but I know that panicking only compounds the problem. I keep an extra 1 mg of Ativan in my pocket for my panic disorder, and I took it just in case.
So that was my day, and I'm glad I had an outing with a good friend. I had him take me home, but overall, we had a good time. It's time for me to get some blankets and rest in front of the fire while watching the snow flakes fall. I'm working hard to not let the negative things bother me so much, and not worrying that I don't have answers to all this right now. Maybe I'm just not a tough person, but I am trying.
-Kyle
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
dude...you sound pretty tough to me....hang in there.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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lymednva
Frequent Contributor (1K+ posts)
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posted
The incident in WalMart sounds like dysautonomia, also.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
kday, many of us have trouble going into Walmart or anyother big stores, some even small stores. You can find tons of threads about getting ill while in stores.
Tons of chemicals smells? Florescent (sp) lighting?
I used to go into a heavy brain fog within a couple minutes. I would need a complete list of what I needed or forget coming out with anything.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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randibear
Honored Contributor (10K+ posts)
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posted
not to mention just the crowds. too many people and i start to panic.
i prefer animals.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Interesting note about dysautonomia is department stores. I had trouble christmas shopping. Not sure if it was the lighting, too much walking, or a combination. However, I would get other things, including ice pick headaches while shopping. Ice pick headaches are a horrific pain in your head that usually lasts only a few seconds. The name is exactly how it feels. What I experienced in Walmart was similar to one of those, but without the stabbing pain in my head. Even though these are disturbing every time, you have to try not to hang on to the emotions that follow.
I am seeing an integrative doctor first that specializes in toxicity and heavy metal toxicity and treats people for deficiencies (such as zinc/b6). He is right down the street.
I think a lot of this is toxin related as I feel more clear when taking all my binders. I still bind neurotoxins even though I'm off antibiotics. For whatever reason it works. I will schedule an appointment with the ANS specialist depending on what this doctor thinks.
-Kyle
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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My name is Lyn and I am 20 years old, Diagnosed at 18 with Lymes in conjuction with mono, estimated time of incubation 8-10 years.
I get those Ice pick head aches very often especially in stores, schools, and my work. I believe it is due to lighting.
Another thing to look into is your liver. Your liver controls hormones/thyroid function which can cause fogginess,and depression AND heart issues, Also it can cause issues with digestion. I experienced many of the same issues as you right before I nearly had liver failure....due to flooding my system with antibiotics that were taxing on the liver (in my case doxy). Periodically I need to stop antibiotic treatment due to unfavorable liver panels. Just an idea! Feel free to e-mail me at anytime for support. [email protected]
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Sometimes when people are really sick with Lyme or have multiple coinfections, Doxy just makes them worse, since it is SUCH a powerful Lyme drug.
That is per my LLMD.
I was drawn to what you said, because I have a LOT of your symptoms, including the sudden onset. I also tested CDC positive for Lyme, but I do question it at times. I tested CDC positive from Igenex and Stony Brook.
Personally, if I had to guess, I'd say your dysautonomia is caused by Lyme, because I get the sense your infectious load is pretty high. The ice pick headaches, etc...to me it just seems like a high infectious load.
This is an out-there suggestion, because I'm not a doctor...but I think you should try something like Bicillin or Amoxicillin. Probably Amoxicillin first, because it's the milder of the two. I think you are so infectious that any combo that normally would help Lyme patients, is killing too much at once.
You just have SO many of my early symptoms, I recognize it all. I thought I was just not responding to the meds when they were making me feel so terrible, but even I didn't realize at the time how bad the infections were.
I had a HORRIBLE time on most antibiotics (Doxy is notorious for this), because my loads of the infections were so high, but Amoxicillin is the first antibiotic I actually could function on, after the initial horrendous headaches (which were clearly herxing) from it subsided.
I think your GI symptoms and belching are damage (not permanent) from the abx...I got that too after Doxy and other meds. I'm not sure if it's candida (yeast) or what, but same thing happened to me, and I had to eat really healthy to make it go away. But once it was gone, it was gone.
Once I found an antibiotic that finally worked out for me, I realized maybe this Lyme treatment WAS do-able.
Pretty much everything about your story reminds me of where I was after my first year of treatment, that was not a very successful year. I have gotten a lot better. I think there is hope for you...you just gotta find the right drugs, that make you herx a little, but then make you feel better, not bogged down and worse.
I meant this to be encouraging, so I hope it came across that way, though I'm not sure if it did. I'm just saying, I think you should try a few more things before you give up on the abx. Or maybe take a break, whatever...but I think Amox could help you, because I feel like I could have written your posts, and Amox did help me.
Good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Thanks for the antibiotic suggestions. If/when I see my LLMD again, I will remember to bring that up. I think at this point he is a bit afraid to treat me, and I am a bit afraid of treatment itself, so I am trying to figure out what route I am going to take. Muscles are starting to get sore now, but magnesium helps a lot.
In my ideal world, I would move out of my parents house and live somewhere else in the country to get treated. Unfortunately, I am not physically or mentally stable enough to be on my own. It's like It's like I went back 20 years and I am 3 years old again again. It's hard on myself and my family. Don't get me wrong, I am well enough to socialize a little bit and drive a car short distances, but even the simplest things can be so hard much of the time. There is no way I could hold a job or even be reliable enough working from home right now.
Carol in PA:
Thanks for the suggestion on the d-Limonene. Just got it in the mail today. I've tried all the GERD pills in the past, and I didn't like them much, so I hope the d-Limonene will be better. I also like the fact that it's just orange peel oil.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
Most of this is going right over my head Wooosh! I want to learn more, I really do.
But yesterday, I was running a mop over an area where the puppy missed the pad (I know TMI), but to clarify, I'm too ill to ever do the whole house, and step up for tiny emergency clean-ups.
Oh, yeah-my point. I was going to tell you all that when my daughter poked her head in to see what I was doing, I told her, "I'm vaccuming the floor, now that I found the broom." WHAT>!>!
This is not rare, I am doing it several times a day where I either can't find the word in my word files, or the wrong ones come out when I open my mouth.
It's a real catch-22 when my brain has become so impaired that I can't seem to absorb any detailed information, or process new information.
I'm five months into treatment, and just had a critical crisis after a very short break from abx. I nose-dived and scared myself to death --unable to even shift in bed without shedding tears of pain from an instantly invasive UTI kidney infection...again.
I'm sorry you're struggling too kday, but thank goodness you can better process information. I'm glad you're getting your brain back. It gives me hope while I'm missing mine.
Hang in there, and know I too have had experiences where I was sure I'd hit the floor in public. It's an awful feeling and all I can think of is "I can NOT afford the ambulance ride!"
I can picture myself refusing to go if I did collapse and they did come, because of that $1,000. ride.
Thank God, it's never totally happenbed, and I hope it never does for you either. It's a very odd feeling and of course it's alarming.
I too have a new resting pulse of 140, that goes up when I'd turn over in bed and pull up the blankets.
It thundered in my ears, making it hard to get back to sleep. In the day time, it thunders when I walk 10 from my bed. Back on Levaquin, it goes away, but this is twice now I've had it and Levaquin killed it. Plus I never had it until my double bite infection last summer.
I'm so glad you have a means of monitoring your B/P. Hang in there, and I don't have anywhere near the knowledge I see in here, but I do offer up my support.
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