seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
The last 2 of 3 days has been horrid. I mentioned before on Monday I had a bad panic attack out of nowhere while on the magic 5 supplements, Cefzil and 1/2 tsp of salt/C.
I stopped all yesterday to try to recover. I felt pretty good yesterday - no panic issues - more energy.
Today, I still held off on the Abx and other stuff and felt good until 1 PM. All of a sudden out of nowhere after lunch I start sweating profusely, jittery, constricted breathing, neck muscles locked up big time, jaw tightness, right side of chest and arms felt funny (kind of imbalanced with the left side), head pressure, and more. it felt like I tried to take a full breath, but only one side of my lungs were working correctly if that makes sense. It got so bad in an hour I needed to take a Xanax again. I have never took benzos before.
The last symptoms was SEVERE SEVERE clear drainage pouring out of my eyes and nose. I felt like a fountain. Again, this happened in literally a split second.
Xanax helped only slightly and took 2 hours to be functional to any level. I was so dead tired my legs felt like complete lead after this episode. THen around 6 PM, started getting sweaty and shaky again and had a strange burning sensation in my head. This scared the crap out of me. I'm very scared about what's happening.
I hope something serious is not wrong with me. This came on suddenly. The breathing issues are a big concern. About a week ago, I felt like my upper chest muscles were very tight. I had bad air hunger on Monday. Either I REALLY irritated some pathogen or I have more to worry about.
Two days out of three I was ready to call an ambulance out of fear. Whatever disease I have makes it hard to want to get out of bed the next day. So depressing.
I've recently had clear CT-scans of my cervical, thoracic, abdomen and pelvis. Several months ago normal cardiac testing (echo, nuclear stress test, EKG). My ID doc's office said severe head pressure is not a reason to do a brain MRI from an insurance standpoint. I had one w/o contrast in Nov-07 that was normal. Brain SPECT normal in late '08.
I keep wondering if these are some form of seizures happening. The severity and combination of symptoms is staggering. Keebler said before they don't sound like it though.
Maybe this is all just General Anxiety Disorder. I'm really wondering. I'm truly ready to try an anti-depressant or anxiety med to try to get some help. I can't live like this if this is going to tbe norm.
Any chance in the world a diseased gallbladder could be doing much of this to me? It's my ONLY proven problem medically besides suspected Lyme. I've heard gallbladders that have issues can cause freakish problems bodywide. My HIDA scan showed 15% ejection.
My last major test my hematologist wants to run is a MRI of my abdomen with specific attention to my liver and gallbladder. I'm not sure what he's looking for or what this test can find a CT scan can't. I'm so tired of testing. I just wish something would explain this hellish stuff and give me sanity.
I KNOW if I go to regular doc, I'll be Rxed a steroid-based inhaler because they'll suspect asthma. Do I risk it? What choice do I have if my lungs are tight?
I started worrying about brain aneurysms, but my wife laughed me out of the house and said I'm being a huge hypochondriac. She says I cry wolf so much she doesn't know what to believe. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I am not an expert at anything, but have lived the Lyme nightmare for many years now, and can certainly relate to the misery you describe.
Yes, it is very depressing to not feel like getting out of bed, because that's not how you want to live.
I am so sorry you are having to go through this.
I do take an antidepressant, 20 mgs/D of Lexapro, which was prescribed by my LLMD. Without it I cry all the time.
So can definitely say it helps me function better cause believe me, people do not want to be around someone who cries all the time, and I do not want to be that person, so am thankful for it.
I'm guessing but if you have been treating Lyme and you stop, the little *******s will react.
Are you considering getting back on the supplements and Lyme treatment? If you have Lyme, you might as well treat it.
Good luck, dear. Try not to worry!!!!!!!
Hugs, Jan
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Seek, I feel so bad for you. I have had all of the above symptoms you mentioned. You might not realize how powerful the salt/c is. (I commend you for doing it
Anxiety can be a big symptom of parasites. I know, I keep repeating this to you, but I have been where you are. It's really rough, but if you perservere you will get through this.
Keep in mind, it can take a couple of yrs. But it will become less servere. It might help if you keep the symptom list from Humaworm close by, so that if you are having some wild symptoms you can refer to it.
Was the drainage sticky at all? BTW, anything that comes out of you like that is a good sign that you are purging toxins.
P. S. I used to worry about having an aneurysm as well. Turned out to be parasites. I used to have very bad asthma for yrs. It is completely gone with treatment. Hang in there, you're tougher than you think
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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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Seek,
I know that you don't want to hear this, you want a 'real' answer. But I have had everything that you have described and more, not recently, but in the past.
I lost 20 pounds in 2 weeks for no reason. I couldn't breathe, my heart raced constantly, it awakened me from a deep sleep, I had a HR of 170 AND SUSTAINED IT FOR OVER 7 HOURS in the hospital ER. No breath, no ability to get my mind to communicate with my right thigh....and much more.
More frightening than all of that is that no one could tell me what was wrong. Believe me, general anxiety IS NOT the cause of your symptoms.
Anxiety meds help to calm down the fear that arises after feeling like we are dying, but that is it. You have a real disease.
I was paralyzed by thinking that I had an anurysm or an impending stroke....it sure felt like something like this was imminent.
Do not let anyone demoralize you by saying that you are a hypochondriac. This disease is capable of ANYTHING, that is my experience.
Everything that you are experiencing is very real. Scary as it is, you are going to get through it. Hang in there.
Posts: 3975 | From usa | Registered: Aug 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Is your abdomen swelled? Ceftin. Mine will swell up like I
am 7 mths. Stop meds. Goes down. Start meds. Goes
up. I think mine is faulty lymph system wont let
poison get out and makes me herx? I think it has
been turned off so long it does not know how to
behave?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Pinelady, my abdomen doesn't feel swollen from what I can tell. I do think my system has major issues removing toxins, but I can't prove anything as none of my docs (including LLMDs) seem to have interest in this topic.
Feelfit, thanks again for the reassurance. My wife truly believes Mestinon will cause all these crazy nervous system issues and the Lyme stuff will just disappear into the night. She pushes me hard every day saying I'm not doing anything docs tell me such as Mestinon, anti-depressants, anxiety pills, etc. so how can I get better? She has no idea the severity of Lyme and no understanding of the destruction it does to your entire system. We'll find out today how Mestinon works. Hopefully, I'll come back here in a week and say I'm cured - gone forever from LN living normal life. lol.
The reason I question the reality of this is the symptoms appear for hours, minutes, days, weeks and then poof..gone. How can a 'real disease process' just leave like this? Some of the issues do seem psychological in nature as there just are no good explanations why one can walk in a garden some days, but not in the stores. One can be a passenger short-term in a car, but not a driver. It's ridiculously stupid.
All I know is every movement in my arm, shoulder, neck, etc. is pure popping lately. I feel like I'm going to fall apart. I'm not sure if I'm going to survive too long if I deteriorate at this rate. I hope my LLMD has some better explanations/hope to offer this month. I've lost all confidence that I'm doing the right thing and really doubt orals can bring me back to normal anymore.
I hear of some many that got better that had Lyme for years and say they had aches and pains (arthritic form) and orals cured them. That is so so so different than neuro symptoms. I hope LLMDs actually pay attention to this and don't treat a one size fits all patient.
Gael, this parasite possibility has me wondering. However, no doc in my state will address it. I don't think many docs respect Diagnos-Techs or labs that make patients pay out-of-pocket. They see these labs as money hungry businesses that'll put anything unvalidated on paper to convince a patient they have a bad health issue.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Seekhelp, I sure can relate to all these crazy symptoms. There is no rhyme or reason to them, which in itself can bring on anxiety, besides the fact that I think anxiety is just a symptom of the illness itself.
I know you don't like taking benzos, but Xanax is what keeps me from completely loosing it. The heck with what people say about the addictive side effect. When I am well, I will deal with that problem, which won't seem like much of a problem compared to all of this. This is just my own experience and what works for me.
Maybe if you could achieve a little calmness, even if it means taking a few benzos, maybe that would aid in your healing. Being in a state of stress and impatience 90% of the time is so bad for you. I think it magnifies everything.
You always seem so worried and uptight. Which is understandable! But it isn't going to make this illness go away any sooner. Patience must be achieved.
I'm sorry your wife doesn't get it; but honestly who that doesn't have LD, really gets it? We all have people in our lives that love us, yet still don't get the seriousness of what we are going through. We have to get past that!
If you are worried about the asthma thing, I use an inhalor and it is not a steroid. It is called albuterol.
I'm sorry you are having such a hard time. You are not alone.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Seekhelp I know what you are going through. Don't
stop complaining. It is the only way we are going
to get a change for the better. You are speaking
out for all of us not just yourself here. And
that helps-not hurts. Look up the instances of
medical cases of Bb being found in arterial
vasculitis and then you will feel better. I know
a fellow who has this. He is on 29 different medications and He also has had to quit
his job and he also has a neg. lyme test. And
refuses to believe he could have Lyme. And his
wife is a RN. Gotta love it.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
seekhelp,
Does or did your LLMD know about ALL the different protocols that your on?
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Seek, didn't you do the AI test? that should tell you what is happening to you. If you have any blocked organs and Autonomics out of balance, not much can happen until you address that. Hope I am wrong and you feel super by now.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
You're running a big risk, seek. Just my opinion.
You need to quit bashing your LLMD. Good docs are NOT free. You get what you pay for.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I hear that Salt C treatment can be really detrimental to some patients. I would cool it if I were you.
Feel better soon.
Posts: 1954 | From Illinois | Registered: Aug 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Seek, any mineral imbalances? How are the phosphorus and iron looking?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I need to apologize everyone. I'm sorry for my behavior today. I've had a tough day. You're right Lymetoo. I'm not sure what you mean what part is a risk, but I can imagine a couple. I've let frustration get the better of me the last 3-4 weeks. I've been dealing with a lot mentally and pressure from lots of angles.
I'm going to be more reasonable now and just accept the way things are with my treating doctor and do the best I can to follow guidelines and make suggestions. I'm not normally as negative as I've been. I got kind of spoiled that my last doc would actually pick up the phone and talk to me when a problem arised at no cost. It's what my wife and I thought was 'normal.' It's all I've ever known with physicians honestly
I only did 2-3 days of salt/C CherylSue. I'm venturing either I built up to a big herx, the new Abx Cefzil knocked me down hard or the 'Magic 5' plus the Abx did a motherload killing of bacteria as Marnie thinks may have happened.
I think I have a lot to worry about on the detox front and habit changing to see improvement if possible.
My behavior will be different.
No mineral imbalances I have seen. Iron levels were totally normal. CBC, MCP, and urinalysis good as gold. Very few abnormalities ever show except for evevated Eos, bilirubin, and high CO2 most times.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Whatever disease I have makes it hard to want to get out of bed the next day. So depressing.
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