Need help. May need to go to ER this morning...

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GWB
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Date Joined Jul 2005
Total Posts : 570
   Posted 1/6/2010 7:58 AM (GMT -7)   
The past three mornings I've been waking up to some new symptoms that concern me and I need some input from you all. Today it's gotten worst than the previous two days.

I get bad shaking and nauseated (almost vomited) and my blood pressure goes up to 144/90 which isn't that bad but normally it's about 117/75 or sometimes just a little bit more.

My head feels like it's swelling inside and my eyes have pressure in them. I smell something in my nostrils that smell like an infection but I don't have a runny nose or sinus issues that I'm aware of. I'm concerned about an infection somewhere in my head or sinus area. This is all new and just started three days ago.

My left side abdominal pain has continued for two months now without letting up and this concerns me too.

I'm not on abx, can't take them anymore. I'm afraid to go to ER because if it's lyme related they won't take me seriously and won't know what to test for.

I'm very concerned about the head/eye pressure and off putting smell that smells like an infection.

I'm really struggling with what to do. If you were having these symptoms and went to ER what would you tell them to test for?

I've been checking out Dr. J's protocol in KS and have gotten a few pm's from people who did well at his clinic. Wonder if I should just plan to go there and get treatment? Not sure how long it takes to get in, that's something that concerns me too because I feel I need to be seen asap.

Please help. I'm at rock bottom now and am concerned that this disease is going to get the victory if I don't do something now.

I need advice and input from you all to help my wife and I make the right decision.

There is wisdom in a multitude of counselors and I'm praying your input, advice, suggestions and wisdom will help guide us as we consider what we will do in the next few hours.

Gary

ria123
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Date Joined Aug 2008
Total Posts : 348
   Posted 1/6/2010 9:28 AM (GMT -7)   
Gary I am sorry your feeling so badly. If it were me I would find a doctor that is willing to listen to all my symptoms. You said if it is Lyme you can't take antibiotics any more can I ask why? There has to be something you can do. If it is Lyme again can you do IV antibiotics, Im thinking if you cant take antibiotics because of your stomach im just guessing here because i dont know yet why you can't take them. Besides that go find a good doctor, start out first by going to the ER if you can't get a doctor to see you first. Just even if they do routine blood work dont tell them you have had lyme before let them run all the test first and see what they come back with it can't hurt. Blood work can show if you have an infection, maybe they can do a head scan or a sinus test to see if you have an infection brewing that you are not aware of. In the mean time I would also find a good Lyme doctor who will know what to do for you. Your not alone, you have to take the first step and get to a doctor, your not feeling well so dont suffer. Remember find a doctor that will listen if your docotr makes you feel like its all in your head leave and find another one. I saw two different doctors until I found the right one. Good luck and keep us posted. hope i made sense.

GWB
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Date Joined Jul 2005
Total Posts : 570
   Posted 1/6/2010 10:27 AM (GMT -7)   
ria,

Thanks so much for your speedy reply. I have chronic, late stage lyme. Have had it since 1995 and was dx five years ago. The reason I cannot take abx is because my stomach cannot handle them. My stomach is a mess right now and one of my worst symptoms. I'm sure I could take IV abx, but I would prefer to avoid them if at all possible. But I'm willing to do it if necessary.

The problem is, the closest LLMD to me is about ten hours away in MO, Dr C. I've gone to one in Texas but he is somewhat of a newbie and does not have a lot of experience with complicated cases like mine. He's basically given up on me because he's frustrated that I'm so sensitive to the abx he gives me. Bottom line, I don't have an LLMD right now and there are none in Oklahoma City where we live.

Right now I'm searching for a herbal protocol to go on. I thought I only had three choices, Zhang, Cowden and Buhner, however, I've had four people contact me from three different lyme forums telling me about another protocol that I had never heard of until now. That's Dr. J in KS. He has a clinic there and from what I understand you stay for two weeks then go back home and complete the protocol at home. They also do phone consults during that time.

As far as going to doctors here in OK, I've gone to several of them. None of them take me seriously. I recently found an alternative doctor who does take me seriously and "knows" about "Lyme's" disease as he calls it, but he does not treat it. He is trying to help me with my stomach issues right now. He gave me several things that have NAC in it. I'm leery to take this since I have six teeth with amalgams in them. I've read that taking NAC could disrupt the mercury and send it to my brain and cause havoc for me. Some people have told me they did fine with NAC and still have mercury in their mouth, others told me it was a nightmare for them. So, I'm kind of unsure how much help this doctor will be for me.

The minute I say "lyme disease" to doctors here in OK, a wall goes up and eyes roll. So now I just don't mention it unless there's reason for it to come up in the conversation. Once lyme disease comes into the conversation the doctor seems to lose interest in me. I'm sure you know what I'm talking about.

My stomach has settled down a bit since this morning but for the past three days my symptoms have gotten worse. I'm still having the head pressure and pressure in my eyes. Also I'm having heart palpitations going on more frequently too. I started taking Olive Leaf Extract (OLE) about four or five days ago, so maybe this has something to do with it, I don't know. I'm on a variety of supplements that most lymies are on including 1500-2000mg of vitamin C, but I haven't been taking any herbs or anything to treat lyme or co-infections with the exception of OLE. I haven't done anything to treat the toxins either because I really don't know how to do it effectively. I really want to have a doctor who will take an interest in me and guide me through the process of treating lyme, co-infections and toxin release. So far I haven't been able to find anyone.

I just got done calling my alternative doctor and his office is going to squeeze me in at 1:00 today. Hopefully he will be able to figure out what's going on with me and treat me with something or refer me to the hospital if he feels it's necessary.

Thank you for taking the time to respond to my post. If you have more questions or suggestions I'm very open to hear back from you.

Gary

ria123
Regular Member


Date Joined Aug 2008
Total Posts : 348
   Posted 1/6/2010 11:12 AM (GMT -7)   
Hey Gary, I heard only good things about Dr J's protocal. One thing I will tell you is my cousin got very sick from Lymes and she could not take oral antibiotics either so they put her on IV. She is finally seeing some light at the end of her tunnel.She live in NYC though. It takes a long time to get better but once you find the right doctor you will get better. Don't ever give up.. If you have to travel to a good lyme doctor then I say take the trip. Find one first that will do IV treatments I think that will really help you. I am no doctor by any means and i myself am still learning about this dreadful disease. But you have to do something. Good luck and please keep us posted.
Maria

Cheezhead
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Date Joined May 2007
Total Posts : 517
   Posted 1/6/2010 12:08 PM (GMT -7)   
Hi Gary,
So sorry to hear about all your symptoms!! Early on in my infections I also had the bad head pressure. If you were to go to the ER, I would tell them you have meningitis symptoms. You may recieve a better responce than telling them you have Lyme disease. It is truely sad that we feel the need to hide our illness.

Best wishes

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 1/6/2010 12:32 PM (GMT -7)   
Smelling strong odors as you mentioned can be a symptom of migraine. The brain is getting mixed messages, so to speak. Your left sided pain could very well be your spleen trying to fight. I had have both of these symptoms from time to time. If you had a really serious infection, you would most likely have a fever, have you taken your temp? Good luck, I have done the ER thing a few times and couldnt wait to get out. But like others said, you could have a CBC done and check for infection.  Take care   D

bucci
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Date Joined May 2006
Total Posts : 1477
   Posted 1/6/2010 3:05 PM (GMT -7)   
Ria ...if you can find the name of the doctor in NYC treating your cousin

Reserection@mac.com

thanks
bucci
hep c , lyme
Dad has lyme


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 1/6/2010 8:16 PM (GMT -7)   
Wanted to give you all an update since my last post here.

Just got back from the pharmacy not long ago after seeing the alternative doctor this afternoon.

I admit I don't have a lot of confidence in this doctor but he's probably the best one I'm going to find here in OKC area. I've gone to three of them so far. Tulsa may have more options for me but I really don't want to drive the three hour round trip to go there.

Here's the latest. The doctor "thinks" I many have a sinus infection based on what I shared with him. He came to this conclusion without even looking in my nose or throat.

I asked him how he could determine that without looking in my nose? He said, "'well, let's look and see then". I don't know why he couldn't have done that on his own without being asked, but he didn't.

After shining the light thing in my nose he said that I had congestion in my nose. I told him my nose hasn't been runny and I didn't feel congested at all. He just repeated it and said you need to take some antibiotics for it. Great, just what I've been trying to avoid taking. He prescribed Amoxy which is the one abx I am able to handle without too much difficulty.

Then he felt my abdomen and said that he believes my intestines are infected and I need to take antibiotics for that too. I asked how he could be sure my intestines were infected without a blood test? He just said that he's pretty sure that's what the problem is. He prescribed Clindamycin for the intestinal infection.

After reading the potential side effects of this abx I don't think I want to take the chance with this one. Has anyone taken this abx before? Check it out on webmd and see for yourself how dangerous this abx can be. User ratings on this was very low as well.

I wonder if the Amoxy would work for the intestinal infection, anyone know? I also have some Doxy left from my lyme treatment. Wonder if that would work? Doxy is harder on me than Amoxy but I could tolerate it for a couple of weeks if I had too.

What's so frustrating about this is, the doctor seems to be guessing and not basing his prognosis on any blood tests. He did feel my stomach and said that it was quite tender and he could feel a small hernia in me. He didn't seem the think the hernia was a big deal or the cause of my problems.

For nausea he prescribed me something called Metoclopram. If you go to askapatient.com or webmd you will see that this drug is a horrible, dangerous drug to take. I cannot believe an alternative doctor would prescribe this horrible stuff.

FInally, he sold be a supplement called Xymogen IgG 2000 DF. These are capsules. I really don't understand what this is supposed to do. If anyone here can explain it to me in simple English I'd appreciate it. Here's the link to the product information: http://www.xymogen.com/2008/formula.asp?code=000019

I called the Hansa Center in KS and talked with them today. I've had four people pm me from various forums. Some here have posted on this thread about this clinic. I am leaning towards going there for a two week treatment plan and continuing it when I get home. If I have problems or have questions they do phone consults. You can look it up and see what it involves. If you want the link I will pm it to you.

They will use abx if you are not opposed to it's primarily a holistic approach to healing. I would really be curious to hear from you all about what you think of this after you read the website.

If you think it's a worthless rip off, fine, tell me why. If you think it's a good place to go for treatment, tell my why you think so. If you've been there please share your experience with me, both positive and negative. If you don't feel comfortable to share information with me on the forum send me a pm.

Many of you made good suggestions and I appreciate your feedback and encouragement. I'm glad I didn't have to go the ER today but it was a close call. I hope and pray that I won't need to go to the ER prior to going to the clinic in KS. By the way, if I do go to this clinic it will be on Monday, January 11. I will let you know what I decide within the next couple of days. I really need wisdom (and lots of $$$$) about this.

You have all been very helpful to me and I thank each one of you for your input, it means a lot to me. Feel free to share any comments about the meds I was prescribed as well as the supplement. I would love to get some feedback from you about this as well as Dr. J's protocol in KS.

Thanks!

Gary

Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 1/6/2010 8:38 PM (GMT -7)   
I'd say 3 hours round trip is nothing, if you can find a good doctor in Tulsa! That's the distance my current one is and I consider myself lucky - like it's next door! Unfortunately I'm also searching for a new doctor because mine is retiring. Good luck to you and hope you are feeling better soon.

ria123
Regular Member


Date Joined Aug 2008
Total Posts : 348
   Posted 1/6/2010 9:26 PM (GMT -7)   
Seriously I say take the 3 hr ride. First of all this doctor is telling you that you have an intestinal infection he didnt even do a Barium swallow or any Gastro testing???? Really think about going to the lyme doctor. Just my opinion.. Hope u feel better soon..

Pomfrey
Regular Member


Date Joined Nov 2007
Total Posts : 23
   Posted 1/7/2010 8:20 AM (GMT -7)   
I started taking Olive Leaf Extract (OLE) about four or five days ago, so maybe this has something to do with it, I don't know.
 
Hi Gary - I am far from an expert, but I do know that OLE can cause you to herx.  There is a website about OLE that describes what they refer to as a "die-off" effect.  http://www.oliveleafextract.com/dieoff.html
 
You may want to look into that.  I am sure there are other sites out there as well, this one isn't particulary for Lyme but it does  talk about the healing properties of OLE and how it affects you.
 
 
Pomfrey
 
DX - SLE, Fibromyalgia, Sjorgren's Syndrome, Raynaud's 1994.  Also Allopecia, Rosacea, Depression, GERD, Asthma, Osteopenia, pre-diabetic, Hypothyroid, Leaky gut, and low testosterone since then.  Positive bands for Lyme 2009.


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 1/7/2010 8:50 AM (GMT -7)   
Thanks for the link. That's good information to know about. I suspect some of the problem I've been having is the OLE stirring things up and die off. Since I haven't been doing anything the kill the bugs for quite awhile I'm sure I've got a lot of toxins in me.

I'm going to be off the OLE for a couple of days and see if I improve some. Today my eyes and head are pretty bothersome so I do wonder if I do have a sinus infection like the alternative doctor suggested. I may go to an ENT today to see if that's what's going on because I don't have any confidence in the alternative doctor at all.

Thanks again for the information and the link!

Gary


Pomfrey said...
I started taking Olive Leaf Extract (OLE) about<b> four or five days ago, so maybe this has something to do with it, I don't know.</b>


Hi Gary - I am far from an expert, but I do know that OLE can cause you to herx. There is a website about OLE that describes what they refer to as a "die-off" effect. http://www.oliveleafextract.com/dieoff.html



You may want to look into that. I am sure there are other sites out there as well, this one isn't particulary for Lyme but it does talk about the healing properties of OLE and how it affects you.

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 1/7/2010 12:54 PM (GMT -7)   
I dont want to scare you but I have a friend who saw a doctor for four years about a "hernia" in her stomach which ended up being Hodgkins Disease and was actually a tumor. There is NO way a doctor can feel a lump and tell you what it is, just is not possible. Take care and good luck  

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 1/7/2010 2:38 PM (GMT -7)   
Dowa said...
I dont want to scare you but I have a friend who saw a doctor for four years about a "hernia" in her stomach which ended up being Hodgkins Disease and was actually a tumor. There is NO way a doctor can feel a lump and tell you what it is, just is not possible. Take care and good luck


I appreciate your comment. It helps me to want to investigate and know more about this possibility. The doctors I've seen have had no curiosity as to why I've lost 100 pounds in one year, why I'm anemic or why some of my blood tests are a little off here and there. They just don't seem to care or they are clueless.

How does someone determine if they have Hodgkin's Disease? Is there blood tests for this? What kind of a doctor would I go to to check me for this?

I've had the scope, colonoscopy, x-rays, MRI's of my stomach in the past one year. Everything has turned up negative. I have no clue what to do next. Any suggestions?

Off topic, I saw my ENT today and he said my sinuses were badly inflamed and I had an infection. I had no clue about that either since my sinuses seemed fine to me. But after waking up the past three days with swelling in my head and pain in my eyes I decided to see him because my alternative doctor suspected I had a sinus infection. Rather than take his word for it I went to my ENT (excellent doctor by not lyme literate) and he prescribed me some cortisone spray Nasacort AQ, plus some amoxy.

I wonder if it's safe to take a cortisone nasal spray with lyme disease, do you know? I also wonder if the infection and inflammation is lyme related. Probably no way to know that but the doctor did say it was serious and that I NEEDED to take the nasal spray asap.

Anyway, thanks for bringing up Hodgkin's Disease. I'm going to do some researching on this and see what the symptoms are. Feel free to respond to anything I've said.

Thanks!

Gary

bucci
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Date Joined May 2006
Total Posts : 1477
   Posted 1/7/2010 3:03 PM (GMT -7)   
Hi GWB
liver, liver, liver.............sinus infection many many many times is from a toxic liver. you don't have to have high liver enzymes in your blood work. I do coffee enemas and castor oil packs over my liver. Liver is the big mother organ that
we all have to keep detoxing and being aware of everything we eat , drink and smell. what ever you can do for your liver.
I spoke to Hansa clinic today . NO antibiotics. I would like to hear from who did this too before I go all the way there.
I don't even have that kind of money so before I go begging for it I would love to hear too. Not that I think anuyone is a ripp off but who got well there. for how long.
hep c , lyme
Dad has lyme


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 1/8/2010 2:53 AM (GMT -7)   
GWB,

Pomfrey is right about olive leaf extract. It can cause you to herx. So can garlic, Echinecea, NAC, and powdered vitamin c. Btw, how are you feeling?


Bucci: What exactly does the Hansa Center do? Do they just use natural products?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


GWB
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Date Joined Jul 2005
Total Posts : 570
   Posted 1/8/2010 5:50 AM (GMT -7)   
CajunGrl said...
GWB,

Pomfrey is right about olive leaf extract. It can cause you to herx. So can garlic, Echinecea, NAC, and powdered vitamin c. Btw, how are you feeling?


Bucci: What exactly does the Hansa Center do? Do they just use natural products?


CajunGrl, thanks for your comments about what can cause herx's. I didn't know powdered vitamin C could do that too. I take about 2000 mg of that daily too.

This morning I'm feeling slightly better with a little less nausea. Thanks for asking.

I had to break down and take some abx (amoxy) for my sinus infection. I wasn't excited to take abx again because of how sensitive my stomach is but the ENT told me yesterday that I have a bad nasal infection and it's very inflamed. He said I had bad allergies. That came as a surprise to me. Haven't had any nasal drip or congestion but the swelling in my head and painful eyes were symptoms of it according to my ENT. Anyway, started on amoxy yesterday and hoping it doesn't upset my stomach too much and stir up all the lyme stuff in me. Don't want to take a chance with the infection though, I feel I didn't have a choice in the matter so I'm taking the abx.

I also have some cortisone nasal spray that he wants me to use but I'm holding off on that until I get some more information about this. Not sure it's safe to take with lyme disease. Seems many people feel it's OK to use this and others feel it could mess me up because of the steroids. The doctor said it wouldn't bother my lyme but he isn't lyme literate. Not sure what I'm going to do yet but I really don't want this infection to get out of hand and if this cortisone spray helps then I'm thinking I should take it. So confusing when you have lyme disease...

Anyway, thanks for checking on me. I'm going to the Hansa Center in KS on Monday and starting treatment there. Hope to have everyone's prayers while I'm there. I will keep you all posted as to how things are going with me at the Center from time to time.

Have a good weekend.

Gary

Harleyrider
Regular Member


Date Joined Sep 2008
Total Posts : 283
   Posted 1/8/2010 6:08 AM (GMT -7)   
GWB Good to hear you are making a very good choice for yourself. Everyone in town
will know you are treating at Hansa because you will smell like flowers. MMMMMMMM NICE!

Not sure where you are from but be very careful coming to Kansas this time of year.
The weather has been very crazy with, deep snow and drifting, icy roads, and power
outages. Looking to get more snow this weekend into Monday. Dont get me wrong the
snow is beautiful but can get hairy at times.

If your flying in please rent a vehicle that has 4-wheel drive.
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/8/2010 9:39 AM (GMT -7)   
GWB,

Please keep us updated. I'd like to know how this all turns out.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Harleyrider
Regular Member


Date Joined Sep 2008
Total Posts : 283
   Posted 1/8/2010 9:48 AM (GMT -7)   
GWB OOPS! Missed that you are from Tulsa. So you know the snow is crazy this year.

Hope you have a safe trip and please keep us informed on your progress.
 


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 1/8/2010 10:05 AM (GMT -7)   
Harleyrider said...
GWB OOPS! Missed that you are from Tulsa. So you know the snow is crazy this year.

Hope you have a safe trip and please keep us informed on your progress.


No, we are from OKC and plan to drive there this Sunday (weather and health permitting). Thanks for the warning about the icy roads. Not looking forward to driving in bad weather. Hope it's good driving for us Sunday.

Gary
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