posted
So, my LLMD called and wanted to talk about getting back on antibiotic treatment. Either he's psychic, or someone gave him the hint I am going downhill lately. He wanted me to see an Autonomic Nervous System Specialist, but I can't see one anytime soon.
Now here is the problem... I went neuropsychologically downhill after he put me on doxy/rifampin/plaquenil. I was not on this planet some days. The feeling of doom lasted weeks after I stopped the meds. I am now on every brand of benzo there is (well, just 3 actually), and the anxiety, or whatever the heck it is, still lingers. However, I improved tremendously cognitively after stopping meds. The anxiety has a cycle like clockwork. Progressively gets worse during the day, and at night 500% better. It makes absolutely no sense to me, and no it doesn't relate to feelings, fears, or any normal things. It can be at its worse while doing something fun. I see a therapist, but that really doesn't make a difference.
Now physically, I am going downhill. What bothers me most? My heart. I've been having on and off extreme chest pain recently. Now the pain, I can deal with, but the arrhythmias where my heart just starts flopping around, I can not.
I went to the Cowboys game the other day, and my chest hurt me so bad, I couldn't even enjoy the game. It was probably from all the walking as I am very exercise intolerant. Resting heart rate at the game: 130 bpm. It slowed down by the 4th quarter as the pain got better. I had plenty Xanax and Ativan with me, but unfortunately, it doesn't relieve chest pain like that. 2 mg of Xanax + 2 mg of Ativan didn't do anything. I used to take beta blockers, but I thought I didn't need them anymore. Hypertension seems to be making a comeback, and orthostatic intolerance is worse (I have orthostatic hypertension, not hypo-). I had some food at the game, which then made things worse because of the indigestion.
Fasciculations are coming back all over. No, these twitches don't hurt, I just don't see it as a good sign when they take over your body. Took magnesium citrate and they kept going all night.
I had my first arrhythmia in a few months last night, and I don't believe it could have been PACs or PVCs. It was relatively short (10-15 seconds), but it felt way too long, and it did not feel benign by any means. My mom was around, and I could not speak while it was happening. I loaded up with potassium and magnesium, and called it a night.
So, while I want to get better, I don't know how it's going to work. I think we were going after too much at a time, and my body and brain couldn't cope.
I am losing a bit of hope. My case is complicated, and it's not my fault. I may not look as sick as many, and I try to give the illusion that I am well with friends and in public, but that's not the case. I either feel bad, or worse. Never good.
By the way, I am 23 yrs old, but feel like I am going on 95. Before all this, I was a cyclist and road about 20-30 miles a day in the Sierra Nevada Mountains. I also snowboarded close to 100 days a couple years ago. After I got sick, 3 days. roughly an hour or two each session.
I also worked three jobs. I worked as a video editor year-round. I worked at a rafting company in the summer lifting maybe 100's of rafts (weighed anywhere between 160 and 350 pounds) a day, and worked at a ski resort in the winter. Life was great.
If anyone here been in my situation and feel like they are lost, what did you do?
-Kyle
[ 01-12-2010, 03:28 PM: Message edited by: kday ]
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Kyle,
I don't have any experience with the combo of drugs that you mentioned so I'm hoping that someone will come along that does.
Keep taking the mag citrate and also don't know where your chest is hurting but check out costochondritis either here or Google.
Last year I started doing alot of yardwork and had a couple of bouts of this condition.
Pain can be severe and along the breastbone. Can hurt for quite a few days and is aggravated by massage and movement.
I'm also on a beta blocker, Toprol XL which has helped tons with my out of control BP.
I felt really lost too early in my treatment. The more I went through and survived and yes, got better, the more slack I cut myself.
Remember, Kyle, you have a devastating disease that takes time to recover from.
Life might not be the same but it's still full of possibilities.
Hang in there!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6155 | From Columbus, GA | Registered: Jul 2004
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Chest hurts bad. Blood pressure high. Not sure what else I am going to tell them. My verbal skills aren't very good. They never have been.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
You're not alone. Tell you LLMd everything so he has the info he needs to treat you properly. Prayers to you. blessings, Trish
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006
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posted
Well, got back from doctors visits today. Since I am so sensitive to everything and since bartonella seems to be a large part of the clinical picture, he is just putting me on Levaquin for now.
I also got a call from an integrative doctor I am seeing in town that my lab work was back and he wanted to see me today.
The good news is, they found things wrong with me. My cortisol is off, my testosterone is low, and he suspects I may have a thyroid problem as well (not out of range, but almost). My LLMD suspected a thyroid problem, wanted me to measure temperature in the mornings, but I used a temporal lobe scanner, and I guess the old fashioned thermometers are best. So I will be doing that per my non-LLMD's suggestions. Just like my LLMD, he suggested Methylcobalamin, so I will be receiving that through I.V. instead of shots for now. I have to pick up some prescriptions from the compounding pharmacy for testosterone and cortisol.
In terms of allergies, severely allergic to wheat, eggs (yolks and whites), and various other foods. Doctor suspects I could have celiac, so he sent blood off to be checked. I did my first I.V. therapy there (LLMD recommended trying glutathione since I respond great to NAC+Whey). Head is clearer, and I feel a bit better, but of course it's not a solution to my issues. I just wanted to try it out. I have some I.V. nutritional therapies set up in the mean time. Like my LLMD, he suggested no sugar and no yeast diet, and gave me a similar sheet my LLMD did.
So, I have more hope now. My doctors seem to be on the same page even though they never communicated. Out of cooincidence, the doctor I am seeing now is familiar with Lyme (though not an expert), and has treated people with I.V. antibiotics.
Lesson of the day: I believe more doctors know the reality of Lyme Disease than I previously thought. It also seems to me that the more knowledgeable and open-minded they are, the more likely they are to see the reality. With a closed mind, your knowledge only comes from what you are told. With an open mind, knowledge not only comes from what you are told, but what you experience.
[ 01-13-2010, 07:05 PM: Message edited by: kday ]
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
Sounds great!! So glad you found out some things you needed to know!
I was helped quite a bit by balancing my hormones...(not just female ones)...all of them.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I am happy to hear that your appts went well and you will be trying some things that may help.
I was helped by using bioidentical hormones from a compounding pharmacy.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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quote:Originally posted by Dekrator48: I am happy to hear that your appts went well and you will be trying some things that may help.
I was helped by using bioidentical hormones from a compounding pharmacy.
That's what I am getting. My doc only believes in bioidentical hormones.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
glad your spirits are up. that is good.
magnesium injections also help me with pain and feel stronger on them, my llmd rx'd them.
Levaquin was a tough drug but worth the pain. I had a ton of pain while on it even in my joints and ligaments. i pushed through and doing a bit better now.
Posts: 3905 | From USA | Registered: May 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
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