seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I know I have not posted much lately. It's not because I'm better at all. I wish. Just taking a break for a bit.
The last few days I've really felt terrible. I've felt extremely seasick as a passenger in the car. I tried walking with my family around a store today and really struggled to walk straight. My equilibrium felt really off. Every time I went to take a step, it was a struggle to feel balanced.
I keep breaking out in mild sweats, especially after eating, but at some points anytime. VERY intolerant of hot weather. I have felt very weak and heavy legs. The head pressure/squeezing has been terrible. My right eye feels very swollen and vision blurry at times. The worse my head pressure is, the worse my eyes feel.
Unbelievably, my opthamologist didn't see any inflammation on my exam last week. No dilation took place though. My glasses script won't stay the same.
WHen I feel bad, my pulse will jump 15-20 BPM too. On an average day, I'm at 70-75 BPM. Today, most of the day I was 95-105 BPM.
I had to drive 1 mile today to drop off my car. OMG was it horrible. I felt so nauseated.
I'm at my wits end honestly. I'm so tired of the symptoms.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I still am so shocked I did not have form of Pseudotumor Cerebri given my issues. I'm a real mystery. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
No comments at all? Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
What are you doing for treatment now? Are you herxing?
Posts: 845 | From Northeast | Registered: May 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
seek,
Sorry you are still so sick. Do you really want me to comment knowing what I might say?
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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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Gael, I am going to guess what you will say. No need to mention that as I understand/agree.
I am not 'herxing' as I'm not on any treatment at the moment. It is odd that these issues come and go some often. That's what confuses me so much.
The swelling feeling in the right eye is getting to be more constant and that scares the hell out of me.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I refer to all my pms. So sorry you are so very sick, but you can change everything today. We are always there to help you.
Posts: 1834 | From US | Registered: Oct 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Karen, I still have all the PMs. Thanks. I'm not forgetting. I have tested for mold in my home every which way possible within my budget - endless air sample tests in suspect rooms, additional mold / VCT testing via a specialty company, etc. It must be the trickiest mold in the world as I cannot find it, especially in any quantity via testing.
I never did EMRI testing though. My frustration mounts by the day over all this.
In some ways, I feel like my issues scream Babesia infection. In others, I'm not too confident. Then there is the parasite angle. The feeling of being lost in your own diagnosis paralyzes one's thought process. I know many relate to that.
It is perplexing that movements such as leaning foeward, turning my neck left/right any distance greatly increase the head pressure/neuro symptoms. Since my spinal tap was normal and all brain / cervical scans were too, it's illogical. It's like my head is too small for my brain and it feels pressurized.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
seekhelp, I agree that many of your symptoms sound Babs related.
How long has it been since you have treated any tick-borne diseases? Are you going to be re-evaluated by a knowledgeable doctor?
Posts: 4681 | Registered: Oct 2000
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I have no suggestions. I am just sorry to hear you are still suffering. I can't imagine how terrible that must be.
Please don't give up. For some reason you are still coping with either a mystery disease or some doctor hasn't properly acknowledged what you do have.
It's almost like you are being poisoned slowly but surely.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Start the parasite treatment to get your brain better. 400 is high mold even if you think it is not.
Posts: 1834 | From US | Registered: Oct 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i was going to bring up the mold only because i remember you saying you couldnt get the humidity down in your house.
air testing of mold is sort of lke lyme testing. a positive is a positve but a negative doesnt mean much
mold is everywhere and if the humidty is above 50 it will find a way to grow
karenl sounds like she knows what is going on-i needto connect with her and others dealing with mold cuz i am in a mess now
good luck-hope you find an answer
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I am going to put my 2-cents in and will get all kinds of nasty PM's because ppl don't want to believe what I have to say about detoxing and clearing the GI.
I was ill 14 years, bedridden 9. February 1st my hubby ordered Nopalea off a TV infomercial for me to try.
I agreed to take it for 30 days, if it didn't help I would stick it with my ABX arsenal, Noni, Mango, Aloe Vera and other band-aid protocols I'd used. Nothing lost.
Within 4 weeks I started having diarreah frequently for a short time. I noticed some seed-like eggs pass from my bowel so I jounaled what passed. During the next few weeks I collected several stages of what I feel are the same thing just different stages. Because I have Morgellons the seeds were full of fibers.
I gave my internal and external samples to a microbiologist familiar with Morgellons and they are being microscopically tested and histology done on them. I received word the samples have been invaluable in their study of Morgellons.
I recently added in Fenben dewormer to flush even more internal stuff and will add Iver, too. I've taken them both with no issues and they do move this stuff from our gut system.
My doctor is fully aware of what I'm doing. He doesn't judge me because he knows I'm progressing well when everything else failed.
I am now lesion free with no itching fits, however, I still have fibers. Life is doable and I'm working on restoring my body and priming my immune system. I take several other natural products for this.
To look at me one would never know I've been bedridden. I'm far from 100% but I have a life, a very blessed one, and can now be a wife, mother, and grandmother to my grandsons.
The Nopalea has increased my vitality, I go non-stop. I have almost no pain and off narcotics. My knees needing replacement are holding up well so total knee replacement scrapped for now.
How loud can I yell ----- PARASITES! As diligent as Gael has been on this forum it seems ppl don't want to hear that what the tick gave us is living inside us, all of it.
Whatever bowel cleanse you use don't stop just because you don't see anything moving. Some of this is microscopic, unseen by the naked eye but it is there. Rotate your protocols with the start / stop method so you can treat the different things in us.
When this stuff started moving out I began to lose my swollen belly and lose weight. My doc is so impressed that I don't need assistance getting on/off his exam table and don't walk with a limp anymore.
I feel like a true miracle and thank God for his blessing of health.
I realize this type treatment is not for everyone, be your own judge and I know some of you will think I'm nuts but that's ok, my brain is free of inflammation and I am compassionate of telling what helped me.
Posts: 245 | From Texas | Registered: Jul 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Sammi, I have not treated for any tick borne illnesses for some time now. Mentally I struggled to do the treatment given my unsureness about my diagnosis. Now I have no LLMD to see which is tough.
The cyclic nature of my symptoms stumps me honestly. I don't fit the same profile as many here when I read stories here, but there are 'some' similarities.
I guess I just need to get off my butt and do SOMETHING and FAST. I just never know what's coming next. All of a sudden last night everything starts aching terribly - legs ,feet, hands, and more. Today I start dry heaving in the morning. All day I have been horribly tired. My hips hurt like hell out of nowhere. How the hell does anyone just experience these whacked out symptoms over a 24 hour period?
Ladyjenie, thanks for your input too. I don't discount the parasite notion one bit anymore. I know whatever I have is not easily tested for. I just know it's in my body everywhere ready to inflame me anytime it wants.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
the only answer to your situation is to stop speculating and start trying several different approaches one at a time.
Obviously, NO ONE has a cut and dry answer for you. The only way to get out of this is to ACT. If you're looking for a doctor to tell you that X is what you have, you'll be waiting forever.
Your symptoms aren't that unusual. As a matter of fact, I've experienced all of them. Try something, anything. And if you're not feeling something after, say, a month or so, try something else.
My head pressure is not completely gone, but it's waaaay better. Same with feeling like I'm on a merry-go-round while riding as a passenger in a car- I'm now driving occ. after 5+ years of not being able to.
I attribute my improvement to working on my gut, acupuncture, and some brain formulas. Now addressing methylation issues and hoping for further healing.Personally, I believe that my methylation issues are why i did not respond to 5+ years of antibiotics.
PS- my 20+ years of illness have been cyclic. Many, many here have cyclic symptoms too- they are called 'flares'.
Posts: 3975 | From usa | Registered: Aug 2007
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Just taking a break for a bit. 
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