seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I had a wonderful day yesterday. Best in a long time. My mother-in-law watched our daughter, it was gorgeous out, and my wife and I spent most of the day Saturday driving around, walking through some stores, etc. It was the most I did in a while. It felt WONDERFUL to feel 50% of normal. Of course I did nothing strenuous, but usually I can't walk much at all and we need to go home. It was the first time I was out in 3-4 weeks, except for doctors!
Fast forward to my hell today. I get up and try to go myself to two stores: drug store and grocery store. I make it through Rite Aid OK (but a bit tired).
I next go to the grocery store to try to pick up 5-6 items. It's a decent size store (Meijers). Half way through it, I start getting extremely weak. My legs are pure jello, out of breath, etc. I try to walk to the register and just can't.
I was completely zapped. I had to stop a customer and tell her I needed help as I felt like I was going to pass out. They bring me to front. EMS comes and takes my vitals: BP: 180/110, pulse 125, 3-lead EKG: perfect. He said I was completely pale and breathing shallow. They were going to take me by ambulance to the ER, but I called my wife as she was 1 mile away thank goodness.
They hook me up to a 12-lead EKG in the ambulance and it's perfect. I wound up not going as I HATE ERs and know if I'm breathing, it's worthless. My legs were literally burning from exhaustion.
I got home and did the big test: panic attack or physical symptoms? I never tried before. Took a Xanax...2-3 hrs later the verdict: NO IMPROVEMENT.
I am so disheartened to feel so disabled. It's useless to do stuff. My legs can't support me much. I truly don't think it's anxiety knowing the Xanax didn't help.
I feel like tossing in the towel. I'm not sure if this is Lyme doing this. Part of me thinks possible unknown neuromuscular disorder or heart valve blockage possibility.
Treatment just isn't doing anything for me.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Hang in there. I was disabled and am getting closer to normal every day.
Check out the thread on pyroluria. Miracle in my book, from the great Dr. K.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
This disease can do unimaginable things to us. You have a WB that points to TBI's. We all could have some unknown orphan disease going on as well, but do we have any other option than to treat?
I am sorry that you had to go through this, esp after you had such a great day yesterday...."the best in a year". If it happened yesterday, it can happen again and will. And hopefully for longer durations.
hang on. How is your wife by the way?
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Have they ever tried giving you a beta blocker to drop the BP and heart rate??
If not, what was their reasoning??
I hope you find an answer soon. I think you need a hospital with some savvy.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
it wasn't anxiety-that happened to me for years. i finally started using the scooter things. if i don't use those and a handicap parking spot i can't get thru the day.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
MY BP Lymetoo usually is 135 over 80. Pulse 75. It only went up after the exertion. I can't handle physical stuff when I exert myself the prior day. My body is toast. It's like a battery with no reserves. I am on THREE hypertension meds currently.
Lpkayak, I have thought about it. It's so tough when you're 34 years old and people can't 'see' you're ill. It's so devastating to admit to myself I can't walk through a simple grocery mart w/o help. I never would've dreamt that would happen. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
seekhelp how long have you been treating? I think it's common to be on a roller coaster of good/bad days in the first several months of abx. Later in treatment the extreme swings should dampen out somewhat.
Posts: 655 | From USA | Registered: Sep 2007
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posted
Seekhelp~I'm so sorry you had such a hard time.
When my husband asks me "Will you come to Walmart with me"?
My eyes get huge and I start to shake like the cowardly lion in the Wizard of Oz.
Too much stuff going on throws me into a neuro lyme episode. Just like you, I can go one day and another day, nooooooooooooo.
This disease is crappy. It will get better as time goes on. Don't beat yourself up. I beat myself up a lot and it's not good for the soul.
Tonight, close your eyes and pretend God is sitting in His Rocking Chair. Tell Him everything in your heart and how hard all this is. He will Rock you and give you what you need.
Try and rest. Peace. Fondly, Connie
Posts: 145 | From Paris, Tn. | Registered: Dec 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Treating now for almost 7 months with two diff LLMDs. First for 5 1/2 months, but didn't make much progress. I've been with my new LLMD for only 5-6 weeks. Nothing great yet. Yes, I know it's early as Keebler has said many times, but it's frustrating. I truly believe one should respond positively if it's the 'right drug' as others have claimed.
My ability to handle Abx is lessening which is worrysome. I previously could take 1,000 mg of Ceftin/Biaxin combined OK.
Under my new LLMD, I wasn't able to exceed 200 mg of Doxy daily (mono) and had to stop 13 days in due to massive head pressure. I can tolerate Clindamycin (600 mg daily), bit suffer horribly with Quinine. I'm scared to go back on quinine after a stroke-like episode and horrible ear issues. I may solo Clindamycin, but is it really worth it? 600 mg Clindamycin daily is a weak dose I think.
I'm supposed to be on 1,000 mg of Biaxin / 400 mg of Plaquenil. Never tolerate Plaquenil well. Forgot to tell my new LLMD that. Any amount of Biaxin in excess of 500 mg daily is making me nauseated now. A few days out of my 10-day protocol, I'm taking 250 mg of Biaxin daily. I think my body is less tolerant to these drugs now. That's BAD. I'm going to get nowhere. My LLMD says low and slow is fine. I don't buy into after reading thousands of posts here and focusing on those who actually achieved remission or 80% improvement.
I could call my LLMD's office, but after three calls already, I stopped. Why bother? It costs $10 to call each time and there are no real answers if one can't handle what is Rxed.
I'm going to get killed on Flagyl and Rifampin probably if I can't handle the previous.
I may try some anti-virals soon and hope they yield more than Abx since it seems like I'm on a losing road. My treatment is a joke (due to my inability to handle what is Rxed to me, not due to my LLMD's plan) compared to most here AND I'm a bigger guy so if weight is indicative of doses needed, then I'm never going to beat Lyme with my med tolerance.
Thanks for the nice thoughts Zebco. I know the cowardly lion issue with Wal-Mart too. My wife always asks me if I want to go.
Feelfit, my wife has been doing fine the last three days. Her BP and pulse is excellent. We're still waiting to hear more from her new doc about the blood tests ran. Hopefully it was an isolated incident, but I'm not getting my confidence too high yet. I'm keeping my fingers crossed.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Seek,
Sorry you are having such a hard time. It does get better. I couldn't walk or talk when i collapsed back in 1983.
I am 80-90% better now. Rule of thumb...If you have a good day and can do some stuff...NEVER push yourself a second day...
Your system is under attack and can't handle it...Try and role with it....we all know this disease sucks.. I used to take pantothentic acid for my adrenals (b-5) 500mg and it really helped
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
seekhelp: the intolerance to normal doses might indicate you are not able to expel die off toxins fast enough and your liver might be backed up.
Are you taking supplements for that? My wife had the same problem where she never beyond half dose of anything. I think it's the inability to detox.
I'm researching detox/liver supplements right now. I think some of the more used ones are milk thistle, NAC, chlorella, zeolite. Maybe somebody could post some others as well.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Seek, I had the extreme muscle weakness you describe. I would get "stranded" ("jello legs") and have to sit down anywhere for a good while (like, an hour) in order to get up and out of the place.
This is not a panic attack. It is a typical lyme symptom. I am recovered. Still, for years I was afraid to take a walk for fear of getting stranded like I had for so many years. That tells you how many times it happened to me.
We had to take vacations where we just drove around since I couldn't walk. We did this for years.
I looked fine too. People said I looked great in fact. This is lyme.
Regarding inability to take full dose meds, I think it would be good to look into detox measures. Burrascano talks about some on p. 13 of his guidelines. If you try some of these and they help, then you may be one of those who cannot detox. That's really good to know. Your lyme doc can then continue treating you and adding detox aids all the while.
I know your frustration with the lack of stamina. This too shall pass. You had one wonderful day. You can have more.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I don't think you really understand how the babesia meds work. Without the quinine the clindamycin won't do much. Actually 600 mg of clindamycin is a high dose of that med. Can easily cause diarrhea at that dose or other G.I. issues.
Don't know what dose of quinine you were trying to take. But hubby only ever took 1 or 2 pills daily. Quinine should help your muscles move more easily. What you are describing as far as the muscle issues are classic babesia symptoms. Also the heart and blood pressure and breathing issues all sound babesia related to me as well.
In my opinion it is better to start treating babesia slowly and gradually increase doses. It may take longer that way -- say 6 or 8 months instead of 4 - 6 months but you are more likely to tolerate the meds and the herxes.
If I was you I would try lactoferrin. If it helps then obviously babesia or possibly bartonella are issues. It will not help with Lyme (Borrelia does not need iron) or viruses (don't think they require iron either).
The dose hubby takes is 3000 mg -- takes 1000 mg with each meal. Wish I had thought to give him this years ago. Lactoferrin binds with iron and makes it available to a person but unavailable to parasites and bacteria.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
seek,
glad to hear of your 1 good day though before the next day. best wishes.
don't let pride stop you from getting and USING A HANDICAPPED PARKING PERMIT! your body will thank you for this...
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posted
Weird boat we are in. I know it's Lyme because I got the rash, saw the tick and have positive blood work, but treatment isn't going so hot for me either.
So do you have Lyme or not? Who knows, but it is most likely in my opinion if you have many of the symptoms.
Posts: 743 | From New York | Registered: Apr 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
TF, I'm sad to hear you and others struggled like I am now, but I'm comforted to know I'm not alone. It's tough to deal with.
Bea, I was taking 325 mg of Quinine daily. I assume 325 mg is the only dosage they have in capsule form? It didn't do much for muscles, but I wasn't on it long.
Except for lack of night sweats, Babs always to me has seemed like the likely culprit when I listen to others' symptoms. The reason I thought 600 mg of Clindamycin was low was I read WildCondor took 1,500 mg daily and 900+ of Quinine!!
I wish I knew 1/8th as much as you about all this stuff. You're so smart. I will try the lactoferrin. Any brand you recommend? How long does it take to work? Can you get toxic? My free iron saturation % was absolute bottom of normal (20 was score: normal was 20-50). This test was ran in Jul-08.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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blaze
Unregistered
posted
The same thing happens to me in the grocery store, because it is located near a cell phone tower, and I can't ever walk through the store without passing someone using a cell phone. Google the non-thermal biological effects of exposure to electromagnetic/microwave radiation. I actually feel my bugs crawling around around upon exposure. It's not just Lyme. It's Lyme and electromagnetic radiation.
I read your post and started crying, I completely relate to you. I am feeling like you described right now as I type, like I could pass out any minute, etc. I am so sick of it.
I feel ready to throw in the towel too, but we just can't, what other options do we have? I have been treating for 14 months now and just don't know if I'm getting anywhere.
I had 2 people tell me the other day how good I looked. I felt on the verge of a seizure at the time, it's so bizarre. I hope you see some improvement soon. I, like you had, get an occasional day where I feel a little better (far, far from normal, just a little better), then to get slammed right back down into the hell hole.
I'm so sorry...TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
Hey Folks, I pulled the tick off on Friday. I got the bullseye thing. What am I in for?
Posts: 4 | From Radford VA | Registered: May 2009
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bettyg
Unregistered
posted
jefferson, i answered in detail on your other post
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posted
Thanks Betty, but I am not sure where I put it; I am new at this! I'll look around.
Posts: 4 | From Radford VA | Registered: May 2009
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bettyg
Unregistered
posted
jefferson, i sent you a PM telling how you can find your posts
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by tickssuck: Hi Seekhelp,
I read your post and started crying, I completely relate to you. I am feeling like you described right now as I type, like I could pass out any minute, etc. I am so sick of it.
I feel ready to throw in the towel too, but we just can't, what other options do we have? I have been treating for 14 months now and just don't know if I'm getting anywhere.
I had 2 people tell me the other day how good I looked. I felt on the verge of a seizure at the time, it's so bizarre. I hope you see some improvement soon. I, like you had, get an occasional day where I feel a little better (far, far from normal, just a little better), then to get slammed right back down into the hell hole.
I'm so sorry...TS
What other options do we have? Sometimes I think for me it would be best to end it all. I would finally be at peace and out of pain and suffering. Plus, my family would probably be happier without my miserable self around. I am nothing but a downer for my family to be around. My daughter might be better off without me!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Hey all-keep the hope. I was sooo sick a 3 years ago. I had POTS so I couldn't even stand for 3 minutes without feeling like I was going to pass out. The first year of treatment, I thought I was going to die.
The second year, things got better..some good days...some really bad days. Beginning of year 3 I went back to work, part time, as I was soo sick of being housebound. Finally went of meds..felt 100%. I unfortunately relpased, but it's 2 months later and I'm around 80%-think I need to stay on 2 months symptom free.
Funny, my girlfriends daughter has been on abx for acne for 3 years..no one thinks twice about it.
Anyways, If I can beat it, so can you. I was housebound, lost 20 lbs on a 119 lb body, dizzy and weak and pretty useless. Unfortunately, it take time.
Posts: 1276 | From maryland | Registered: Jan 2009
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Sorry, I am not sure how much desctruction I can cause to my life and family that can't be undone. I am like living with a monster. I am such a different person now.
Plus, my doc says can't understand my case any longer. A year into treatment and I am not better.
Their patients all seem to heal in about a year. Only one went past a year. I guess I am two. She said those in good shape and healthy are quick healers.
I have always been a health nut and hear I am dying.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Richedie,
I hope you can find a better LLMD. Many advanced cases can take long than a year to see improvement. You need a doctor who will not give up but look for other ways or other things that may need to also be addressed.
Something needs adjustment and no good doctor would just say "too bad."
best supplement for energy is Intramax and has anti-microbial properties as well.
I dont sell it, it just has helped me and know what it feels like to feel zapped. Also b12 injections are great.
Posts: 187 | From FL | Registered: Nov 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Seek, I also can relate (most of us can!!!). I'm only 25 and also have good and bad days like you spoke about. One day I can be pretty normal and functional and the next I can't walk far without getting short of breath and need to sit down before I fall down.
It's just the lyme and co's messing with our body. It will get better. You will start having more good days. It's a very bumpy road we're all on, but one day we'll make it to a brand new, smooth road.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by Keebler: -
Richedie,
I hope you can find a better LLMD. Many advanced cases can take long than a year to see improvement. You need a doctor who will not give up but look for other ways or other things that may need to also be addressed.
Something needs adjustment and no good doctor would just say "too bad."
Have you considered Rife?
Good luck.
-
Not sure what to say. My doctor was highly recommended and worked with Dr. B and also talks to Dr. B all the time.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Seek, did you run the cortisol at all?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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I truly don't think it's anxiety knowing the Xanax didn't help. 
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My wife always asks me if I want to go. ![[group hug]](graemlins/grouphug.gif)
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