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Posted 8/25/2014 7:52 PM (GMT 0)
I’m really hoping someone can relate to the symptoms I’m suffering with. I have an overwhelming fatigue and I develop bad headaches/head pressure within a minute of standing up and walking. If I walk 2-3 blocks, I’m constantly drifting on the sidewalk and trying to keep my balance; I even miss steps when I walk up stairs. The headache takes about 20-25 minutes to subside, even just after a 5-minute walk. It’s absolutely debilitating and has prevented me from doing basically everything aside from getting to work (which is still very difficult).

Walking a few blocks leaves me out of breath and in a daze. I feel the inside my head wobbling back and forth trying to process what is going on. My visual perception feels dreamlike and generally uncomfortable. I’ve seen people struggling with intense exercise, but never something as minor as walking a short distance.

I had a weak positive for Lyme via Igenex and no known co-infections. My treatment currently consists of Biaxin/Mepron/Doxy with various dietary supplements (no improvements so far, 5-6 weeks).

I’ve been dealing with this for over a year with no relief, and it’s hell. Does anyone else experience this?
Posted 8/25/2014 10:17 PM (GMT 0)
Stiles sorry your dealing with this, I have a vertigo/dizziness but not to this extent. I do know if your not detoxing enough you can feel worse.

I didn't have a strong positive on the Igenex either but I've been in treatment for 9 months now and feeling better, but I felt worse before better. It was a good few months before I felt better but could you be having a reaction to one of the ANX? Did you feel like this before the meds?

Where you checked for the MTHFR mutation? It has something to do with our detox pathways and there are certain vitamins to take if you have it.

Have you read the New to Lyme and using all the ways to detox?

Hope you feel better soon.
Posted 8/25/2014 10:27 PM (GMT 0)

Revive said...
Stiles sorry your dealing with this, I have a vertigo/dizziness but not to this extent. I do know if your not detoxing enough you can feel worse.

I didn't have a strong positive on the Igenex either but I've been in treatment for 9 months now and feeling better, but I felt worse before better. It was a good few months before I felt better but could you be having a reaction to one of the ANX? Did you feel like this before the meds?

Where you checked for the MTHFR mutation? It has something to do with our detox pathways and there are certain vitamins to take if you have it.

Have you read the New to Lyme and using all the ways to detox?

Hope you feel better soon.

Thanks a lot for the reply Revive. I've had these symptoms long before I began treatment. I had a rough few initial weeks on the antibiotics but my body seems to be dealing with them alright now. I have read the New to Lyme thread and am doing my best to utilize some of the detox methods. I can't seem to find someone else with the same set of symptoms as me, so I'm wondering if there's something else going on here. I'm not very familiar with MTHFR mutation, can you tell me a little about it? Thanks again!
Posted 8/25/2014 11:56 PM (GMT 0)
I've recently been diagnosed and been on my antibiotics for almost a week. The first couple days were okay, no improvements but no worse either. then on Saturday it felt like I took three steps back. I was so bad I had to call out of work the next day.

My symptoms are a bit similar. The headache and head-pressure I was experiencing has subsided for now. I know a lot of mine is tension from my stiff neck, so I've been trying to massage it and be more careful in the way I sit and lay down to sleep.

I get bouts of dizziness. Sometimes I'm sitting down watching T.V and suddenly it'll hit me. The worst times are when I'm lying down with my eyes closed and it still feels like my head is spinning.

I don't think I'm as unsteady on my feet, but I can't walk very far either. I can barely make it through a supermarket before I feel like I wanna fall over and pass out. Cooking and doing regular chores are also hard on me right now. I feel like if I push myself even the slightest bit or stress myself out and I'm going to be sick and in bed the rest of the day and the following day too.

I haven't been on the medication long and I also haven't been dealing with the symptoms as long as you have. Aside from the antibiotics, is there anything else you're taking?

I'm personally looking into Buhner's protocol. I have alot of other issues I'm dealing with too, mainly my gut. But with the fatigue and malaise it's getting extremely frustrating. I don't leave my house unless I have to and spend most of my time in bed. Right now I'm just hoping for some semblance of my life back.

Good luck and I hope you get through this rough patch soon.
Posted 8/26/2014 7:05 PM (GMT 0)

Cheetahjade said...
I've recently been diagnosed and been on my antibiotics for almost a week. The first couple days were okay, no improvements but no worse either. then on Saturday it felt like I took three steps back. I was so bad I had to call out of work the next day.

My symptoms are a bit similar. The headache and head-pressure I was experiencing has subsided for now. I know a lot of mine is tension from my stiff neck, so I've been trying to massage it and be more careful in the way I sit and lay down to sleep.

I get bouts of dizziness. Sometimes I'm sitting down watching T.V and suddenly it'll hit me. The worst times are when I'm lying down with my eyes closed and it still feels like my head is spinning.

I don't think I'm as unsteady on my feet, but I can't walk very far either. I can barely make it through a supermarket before I feel like I wanna fall over and pass out. Cooking and doing regular chores are also hard on me right now. I feel like if I push myself even the slightest bit or stress myself out and I'm going to be sick and in bed the rest of the day and the following day too.

I haven't been on the medication long and I also haven't been dealing with the symptoms as long as you have. Aside from the antibiotics, is there anything else you're taking?

I'm personally looking into Buhner's protocol. I have alot of other issues I'm dealing with too, mainly my gut. But with the fatigue and malaise it's getting extremely frustrating. I don't leave my house unless I have to and spend most of my time in bed. Right now I'm just hoping for some semblance of my life back.

Good luck and I hope you get through this rough patch soon.

I'm right there with you. Basically I'm on house arrest due to the constant exhaustion, headaches and balance issues. I just wish I had something to call it. I'm not sure if I should be seeing other doctors to continue looking for a cause, or if it's likely that this is another Lyme symptom that will subside as treatment continues. I'm at a loss.
Posted 8/26/2014 7:08 PM (GMT 0)
stiles are you currently seeing a LLMD or other doctor that's treating you for Lyme? A weak positive is a positive, nonetheless...
Posted 8/26/2014 7:22 PM (GMT 0)

sarahm620 said...
stiles are you currently seeing a LLMD or other doctor that's treating you for Lyme? A weak positive is a positive, nonetheless...

Hey Sarah, I am seeing an LLMD. I'm currently being treated for suspected Babesia (not confirmed) and Lyme. Antibiotics include Biaxin/Mepron/Doxy. I'm also including various other supplements and a strict gluten free/dairy free/sugar free diet. I've been on antibiotics for about 5-6 weeks. I'm told that this isn't enough time to know if they are making a difference, so I'm hoping I'll notice 'something' soon. Any improvement, even tiny, would be so encouraging for me. The only thing that has happened so far is some skin symptoms have began clearing up.
Posted 8/28/2014 10:03 PM (GMT 0)
From what I've been reading, everyone's response time is different. I've been on abx a week and I'm going crazy. I feel like I improve slightly a couple days and then take two steps back for the next couple of days. I'm not sure if I'm herxing or not reacting well to the medication, or not reacting at all.
Posted 8/29/2014 12:10 AM (GMT 0)
Hello stiles - so sorry you are going through this.

I have had similar symptoms. Fatigue and dizziness were always my major problems. I have been under the care of an LLND for almost a year now and am improving, but I still have trouble walking any distance. I have not yet tried to walk around the block. My energy is used up going to appointments and doing what I have to live - like cooking and caring for my son - but at least now that is getting easier.

I had terrible dizziness and fatigue before I was diagnosed. I was so bad I could hardly walk up the stairs and when I did I was completely out of breath. I couldn't stand in the shower so had to take baths. I even took a phone with me as I was never sure what was going to happen. I have improved since that time but I still battle with low energy and often have that feeling of being off balance. I often have to lie down during the day for a while. Sometimes it feels like my head is too big or heavy for my body and if I move it too far in one direction my whole body will follow.

I have head pressure too, but it comes and goes. For me I feel it just above my ears. It can get pretty uncomfortable. I think I know of the dazed feeling you spoke of. It feels like brain fog and I my head is not clear.

I tested positive for Lyme, Babesia, Bartonella, and Ehrlichia.

I just want to tell you to keep the faith. As I mentioned I still have these symptoms but after several months of treatment the severity of my symptoms are lessening and I am slowly getting better. There is hope!
Posted 8/29/2014 12:20 AM (GMT 0)
Yeah, there's no way I could walk through the grocery store. I'd need a wheelchair for that, which defeats the purpose. I can walk down to the mailbox, about 100 feet there and back. That's it.

Most of it is weakness, but I get dizzy too. I also have vertigo, but it is usually short lived. It happens when I roll over in bed, and the whole world spins. At first, it was bad, with vomiting and everything. Hope it stays mild!

I also have horrible headaches/neck pain.

Hopefully we'll all start getting better soon!
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