nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Yesterday I was posting that my depression and dizziness was gone. Today it is back! I feel like I have fallen off a cliff.
I cannot understand what has caused this. There has been a decline since I started Mepron from Canada about one and a half weeks ago. Is there something wrong with it?
On the week end I had a horrible cramp in the back of my thigh that felt like my tendons would rip. I have not had one of those since last year. My fatigue has become worse.
Then last night I could not sleep well. When I finally got some sleep I woke up with dizziness. The kind that does not go away. I feel pretty depressed.
I pick up Malarone at the pharmacy today to start.
This disease feels bipolar. One day I am posting positive thoughts trying to be encouraging to myself and others. Then over night I am in complete despair.
-------------------- 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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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I am not an expert and I don't know whether or not your meds are good....
I DO know I would have one day good and then BOOM, next day down. My sister learned to just ask "how are you 'today'" I am learning to live in the day, that is all we really have anyway.
Take care, Lyme is a wild ride.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
I don't know if this will help you, but all I can really say is that I can definitely relate and feel your pain.
Dizziness (the kind that doesn't go away) is my main symptom day after day. I try to be positive though like you said, until I realize how much it limits me. For instance, today, I really thought I should get at of the house. Within 2 minutes of enterering the store, I had to leave because I felt SO dizzy.
This failed attempt, plus the symptom itself, then turns into me feeling upset/depressed and it's just a vicious cycle.
I'm thinking you're going through the same??!
You're not alone...
Posts: 82 | From NJ | Registered: Mar 2011
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posted
The nature of this evil beast is that it not only cripples you physically but also destroys you emotionally too. Nothing like kicking you when you're down, huh?
The ups and downs are maddening. You're right, this disease is bipolar and it makes you feel like you're losing your mind!
Could this reaction be a herx? You mentioned it's declined since you started the mepron. Could you maybe work on detox a bit and see if you have any relief? I know different things work for different people but when my pain/dizziness/weakness is the worst detoxing helps.
For me, copious amounts of water (I drink at least 2 gal a day, and keep a bathroom close at all times!), detox bath (don't get immediate relief but within 24 hrs) also putting fresh lemon juice in water helps.
The lymphatic system is one of the main detox pathways. If it's blocked or bogged down it can make your syptoms worse. Light exercise or stretching, skin brushing, GENTLY massaging the areas where lymph nodes are located, herbal supplements and water can all help keep it running smoothly to remove all the die-off and junk that your body needs to get rid of.
I agree with dogsandcats. You literally take each day as it comes and don't think about the next until it's here. It's too overwhelming otherwise.
-------------------- No tick bite/rash sick Nov '09 diagnosed Mar '11 Doxy/Zithro LOTS of supplements
Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED! Posts: 127 | From Illinois | Registered: Sep 2010
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posted
I hear you on the dizzyness. I blame it on bart!
Posts: 129 | From West | Registered: Jun 2011
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
nefferdun,
I hear ya! I was down then up and now down... in fact yesterday I was so high I made dinner, cleaned the kitchen, organized my meds, etc... this morning I didn't want to get up... dizzy, depressed, tired, leg hurt. WHAT?!! I was having a good day yesterday! I want more good days. I don't want to fall back into the bottomless pits again!!
Maybe tomorrow will be a better day for all of us!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
Wondering what any of you have done to help the dizziness go away? A medicine? A supplement? Thanks!
Posts: 82 | From NJ | Registered: Mar 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am glad this is not craziness. It just makes no sense- but like all of you said, there are really good days and then for no reason, a huge backslide. I understood Bb much better because my flares were every 28 days. I can't find any logic to this. My husband helped me set up a calendar so I can check for a pattern.
I spent much of the day in bed. Then this afternoon the dizziness eased up. I thought perhaps I might have a virus but then I had muscle twitching and tingling down one leg. Maybe another infection is emerging. RIght now I am having a hot flash with sweat - babesia.
The last LLMD I saw told me not to bother with any supplements, not even artemesinin. It makes it hard to believe anything really helps when a "guru" of lyme tells you it doesn't.
I did buy an incredible juicer yesterday to make whole raw food "juice".
-------------------- 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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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I was sitting her a few minutes ago, sending a PM, when suddenly my head started spinning so violently I was rocking in my seat and nauseated.
No question I am relapsing and the only explanation I can find is the Mepron from canadadrugs.com. I posted about it last time I tried it because I was having the same experience of feeling like I was back sliding. I increased the dose slightly and things worsened. I questioned it being a herx but it was not an exaggeration of symptoms I had- It was a return of symptoms gone for months. It makes no sense that I would have symptoms come back that I have not had in six months unless it just is not working.
So this is the second time and it is much worse than the first. I got the malarone from the local pharmacy and started it last night. I don't want to bad mouth a drug company but I can't think it is anything else.
This is very depressing to me. I was so much better and now I am back to ground zero. I am exactly where I was 6 months ago with the dizziness and feeling such despair. I have lost everything I struggled for. How long will it take me to recover back to where I was?
-------------------- 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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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
Neffer are you taking electrolytes? If you are not, it can't hurt to try
Add it to water and drink plenty
I have taken Mepron from canadadrugs......I don't think their quality is questionable
Are you detoxing enough? If you feel better after a FIR sauna session or a coffee enema, then you can blame the dizziness on toxins
Hang in there
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
thanks lauralyme.
I hope you are right about their mepron being ok. I just emailed them asking a few questions. I spoke with GSK and they told me it could have been made in some other part of the world with different specifications. Shipment also affects quality.
Mine was shipped in winter with no protective packaging to keep it from freezing. So I emailed canadadrugs to get some answers. Their Mepron tastes completely different from what I bought here. It tastes slightly rancid. It did not come in a box like what I bought here, and no information about side effects etc. That seems strange to me.
I sure don't want to spread a bad name about the company because it is $400 cheaper than here but I need to figure this out.
My set back coincides with the switch from US purchased Mepron to Canada online purchased Mepron. I have had this happen twice. I used it once before and quit after a week and a half because of the same increase in symptoms.
Could be perfectly explainable - just coincidence. Maybe I am just sick with a virus and happened to be sick the same time before. Maybe I took slightly more and that caused me to have a lot bigger herx bringing up symptoms I had not experienced in months.
Thanks for responding.
-------------------- 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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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
I sympathize with you as I know how maddening it is trying to guess what is going on as there are so many variables. It can drive a person crazy trying to figure out why they don't feel well.
That is the main reason why I've been so strict with diet as at least I can eliminate that variable as to why I am feeling well.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Very true! I can't determine when I am relapsing, herxing, having side effects. . . . . much less which infection is causing what.
The fact is when I was undiagnosed with lyme, having been told six times I could not have gotten anything from the tick bite --well, I was convinced the pharmacist had compounded my hormones wrong and that was making my eyes irritated. I went to six different pharmacies!
So I admit I could be looking in the wrong place. I hope so because the alternative is pretty bleak. It means I have to start over because the babesia has had time to multiply and perhaps even formed resistance. Boy can my mind race. Anxiety.
-------------------- 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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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
I don't think Babesia multiplies like Bb does. I think it's just there. Don't despair. You will beat this Babs.
One day all this will be behind you and you will have completely forgotten about all this suffering. The brain has a magical way of doing that.
Feel better in knowing that you are not alone in this very frustrating situation.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I don't like that your Mepron is different from your usual Mepron. Does it have little bubbles? Is it thinner? I've heard of pharmacies "watering down" their Mepron. Despicable!
Have you increased your dose? That puts me right back to herxville.
Don't panic. You are not back to where you were 6 months ago. You are either herxing or relapsing, but, either way, you have been hacking away at your Babs population and the numbers are down.
Keep hacking. Take that Malarone. If you want to add some herbs, I can make some recommendations.
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Have you heard about the Mepron Blues? It sounds like a song title, but there's a actually a thread here about it.
Mepron can make a person horribly depressed, so please read that thread.
I'm not in your shoes, but it does sound to me like you are herxing. I almost always get old symptoms coming back again when I herx, with a few new ones at rare times.
The fact that you felt you were improving and then plummeted is possibly a good sign the med is working.
Please do read that Mepron Blues thread - I recall there being a lot of helpful info and support in there. Wish everything hadn't gotten moved and hidden like it did - that one was really important.
posted
Not only do I have "better" days and horrible days but my day can change from one hour to the next. On the day I am feeling even a little better I have hope that I will beat this but when the next day comes and I feel awful(like today) I get so frustrated and upset.
This month it has been 4 years since my unknown tick changed my life...
Anxiety and depression are such a big part of this disease because of the disease itself and the way we have to "live" our lives constantly thinking about ways to get better.Also feeling sick and in pain almost all the time really affects us.
Yes-when you have a "better" day it is like a tease.
Does anyone else feel that life is going on around you and you are just a shell of your formal self??
Oh and Herxing is great fun too!
L
Posts: 256 | From long island, new york | Registered: Feb 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
This is a really bad day for me. The dizziness is so bad I cannot look down without my head realing. I just spent an hour complaining to my poor daughter (who is an adult) about how isolated and frightened I feel. It is the first time I have ever opened up to her, not making light of everything, insisting I am just fine. I really am depressed. This is just like it was when I first started Mepron six months ago.
I guess the Malarone is causing a herx. I have kept going by telling myself I am almost there, I am not as bad as many other people (which is true) and I will be well. Sure don't feel that way now.
It does help to get the support and compassion all of you offer, and to know that others out there understand.
-------------------- 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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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Im sorry for the pain, relapse, herx or whatever, it's not fair.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am herxing from the malarone and maybe some side effects too like stomach cramping. But I don't think the Mepron was causing a herx.
It makes no sense to me that I would slide back so far for no reason. I am going to look up my old posts to see how starting mepron affected me way back when I first got the prescription. Then i will know how I herxed on it so see if maybe the Canadian drug just wasn't doing the job. Thanks everyone.
-------------------- 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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