kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Well the subject tells it all.
Most of you know that I have been in the hospital for 18 days out of the month with many questions unanswered.
I was discharged from 2 hospitals. One found Mitral Valve regurgitation and the other Addisons Disease.
I also have Bart, Babs, and Mycoplasma and just recently found out my son has a postive band 41, a low CD57 (36) and a postive Bartonella test.
I was discharged on Tuesday after being in the hospital for 13 days.
I was thinking about going back tonight because I can barely breathe, my legs are giving out on me, I'm extemely dizzy and the same darn shooting pains in my heart are getting worse. IM 23!!!!
My blood pressure is now 160/101 when all through this disease it has been 120/80.
I called both hospitals and the hospital that I was discharged from on Tuesday said to go to my local ER because they heard me having trouble breathing.
I am DONE.......... What am I to do???? Go back and deal with the same quacks I dealt with before for them to only discharge me again????
All I know is that there IS a problem that hasn't been found besides the Lyme. I guess I'm just crazy........
I feel like cashing in.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Please go to the hospital.
Let them give you something to lower your blood pressure.
Don't cash in.
I know this has been a horrible time for you and your family.
Sending you prayers and Angels to give you peace and healing.
Please don't wait to go to the hospital.
What would your little boy do without you?
Please.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I am SO sorry to hear this again. I pray they can help you. I agree with the other poster. You're life is too important to give up. I wish you the best.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
You're too young to cash in. Once you get squared away, you've got your whole life ahead of you. Geezers like me (60), have, what, ten maybe fifteen years.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I know you are in a bad, bad place.
Go to the ER. Have them check you out.
Difficulty breathing and high blood pressure should be checked.
Don't give up. We're here for you.
You need to hang on.
Trust me when I say to you that there are many here who
Know how bad things can get.
However, we also know that things can and do get better.
You have to be around to see that happen.
Praying for you and your family.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
They HAVE to help someone with high BP and difficulty breathing....Lyme, or no Lyme.
Please go and get checked out. They will likely admit you until the BP and breathing is taken care of.
I hope you have stopped all abx???? ( I am not a dr! ) This could be a severe herx..??
We love you and want you to go on!!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Never thought about giving up until now. Was always positive, for my family.
It seems as though I need medical attention, but lack it when going to the ER.
WHY GO??? To tell me "it's just the Lyme" or "It's just the Addisons and Lyme"
"Oh and what about that NEW port that was put in, maybe thats the problem. Let us rip it out for you"
Been there done that. I'll sit in the ER for hours and probably, being at the point right now,flip a s*** and go bizurk at the doctors.
We all know how they work, why do it??? Maybe I'll stop breathing or my heart will give out, then maybe that will clarify things.
This post is by no means to get attention or the pitty from anyone. I'm downright in the dumps.
Too much pain with these new symptoms. By the way I havent herxed in 2 years. The meds I'm on now are no different than the ones I was on before.
If you call "cashing in" a herx, then so be it.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Maybe try to stop your meds after you level off a bit. I'm not sure which ones you take that are necessities.
You may be poisoning yourself with too many drugs. Some people have adverse reactions to the drugs & they may become more ill than they are without them.
You may want to try a more natrupathic protocol... seems like the drugs aren't working.
Just a suggestion.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
So sorry you are feeling this way! Have a pity party if need be, you are entitled. I have been where you are and you like myself, you have a family that needs you. Please just get through today. You are stronger than this! I will pray for you and ask that you give this to god if it is too much for you.
If you do end up needing to go to the hospital I would try to go to one you haven't been to before and just play dumb about the Lyme. I always do and think I get treated better when I do. Also, if you are having trouble breathing they have to get you right in so play that up a bit if need be.
And as far the doctors try and remember they are going what they have been told. It is frustrating I know. They may at least give you something for the pain. I'm not sure what to say but please don't give up.
Take Care, Ann
-------------------- If you keep doing nothing...nothing changes!
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Roy, I'm so sorry that you are down in the dumps. I think it would be unusual if you weren't feeling a bit stressed out and down after all you've been through recently.
You have a strong spirit and a wonderful family. You are intelligent. You can find solutions. I know it seems like an eternity of feeling so sick but give it time. You WILL get better and you WILL have many wonderful years ahead.
I had lyme disease for 50 years and had been sick off and on since age 5. Didn't know what was wrong. You KNOW what is wrong for the most part. You are young and can expect to get a lot better.
Please strongly consider getting something for depression if you aren't already taking something. If you are, consider talking to your doctor about some adjustments. Sometimes we just need a little help to get through these rough times.
Please keep in touch and let us know what happens with your breathing problem.
My love and prayers go out to you and your family.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
I feel like I'm breathing through a straw.
My heart feels like its being stabbed, I'm extremely dizzy and my legs feel like jello.
Everyone says to stay positive and I will get better, do you know that for sure?
I'm done with this bull****. I'm tired of fighting.
As far as the ER is concerned, I'd rather die then go to another one although it would be in my best interst to go.
But then again, are they going to admit me or just f*** around?
Maybe I should try every hospital in the Tri-State area.
There are only two others I would consider going to, but why should I have too???????
Why can't I go to the one thats 5 min away like I did before.
Ohh I forgot, they will think I'm crazy for coming in again.
F*** it all.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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WildCondor
Unregistered
posted
Hi there,
Sounds like the doctors are JUST finding out what's wrong with you. Once they figure it all out, and get you on the right meds, and the right doses, im sure you will stabilize. Give this time...go back there and get help, make them figure it out. Yeah, the hospital isn't fun, but they've got to get your meds adjusted. Adrenal support is a huge deal, and it takes time to stabilize on meds.
Don't give up. Most of us have been in the same situation. Keep living, keep fighting, and know your not alone in your fight. When I got to the point your at, I just started laughing at everything, trying to find the humor in the seemingly depressing. You'll be fine, you just need adjusting! Stay strong.
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posted
Trying again as the computer lost my first response.
First off I will say that it sounds like your babesia is acting up. If you have not done this yet in your treatment then it might make sense to try going after the babesia and bart (since both involve red blood cells) really hard and backing off on the Lyme meds. Hubby's current LLMD says to treat the most symptomatic infection the hardest.
I personally think that too aggressive treatment can actually weaken the adrenals further.
Second, I don't know your insurance or financial situation, but if you can afford it then I would suggest going to an ACAM doc. Maybe they could be your primary doc or just another consultant. To be honest most LLMD's just do not have enough time to fully address all the issues -- especially with the sicker patients.
Hubby does much better when he uses a combination of alternative treatments (herbs, supplements, IV glutathione etc) and antibiotics. Anytime we focus too much on either antibiotics or alternatives he goes downhill. It is a balancing act for him.
Hubby has been where you are with the ER's and hospitals. They can drive you up a wall if you let them.
This is not medical advice, just my opinion based on hubby's experiences.
Hang in there.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Kreynolds,
Have you treated for Parasites and Worms?..I had severe asthma for 40 yrs....many hospitalizations (via ambulance) for bronchitis, pneumonia, vomiting blood..
.had to be on oxygen at home...my point is when I got rid of a large number of parasites and worms, the lung problems left..Check out
This is EXACTLY what came pouring out of me.....Parasites and Worms are a MAJOR problem for Lyme sufferers...Sorry you are going through so much,
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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bettyg
Unregistered
posted
roy, katie, and son: grouphug:
roy, you've been to hell and back in the last 18 days; battling and battling to get answers; for them to listen to you and do pro-active things.
i know it gets so tiring to battle, battle, and battle!
what does katie say about this? somehow there is a silver lining, but only god can bring it out to the front lines.
don't give up roy; we are here to SUPPORT YOU, vent to, give inspirational sayings or our heartfelt words, and just be one of your LARGER, SUPPORTIVE FAMILIES/FRIENDS!
are there any other CLOSE BY HOSPITALS to go to or you out in the boondocks?
roy, i send you my prayers to overcome all this pain, advertsity, and the large amount of ducks that unfortunately run our hospitals.
KEEP EDUCATING THEM; don't let them pull the wool over YOUR young eyes. YOU know more than any of them will know in a lifetime. you've been there done that.
praying that your pain will go away and make tonight's sleep good and tolerable...
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Sound like it could be uncontrolled hormones. Addisons syndrome is not easily controlled. It can go haywire for Lymies. Go to hosp. and get checked out. You are not crazy. And you can get better.
-------------------- 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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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Please check in with us this am.
Very worried and concerned about you and how you are doing.
Prayers still coming your way.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Alv
Unregistered
posted
Please stay srong and hang in there.
I agree BARTONELLA and BABESIA need to be addresed.No Matter what you are taking as Antibiotic you can cover BART with hh ( IF YOU CAN afford them ) AND address BABS with at least MALARONE( artemisia SHOULD ALSO BE IN YOUR HANDS) that seems to cover most type even the fry bug.
Also I sugest you need to really take under the considerations NEMATODES that come with the tick bite...THEY are too large to travel in the body ...
I have had them moving into my veins and they would create Cloggs...Blott clotts....I could feel THEM AND and MY SON also .....( WE RECALL WE HAD taken tons of wobenzymes in th eboddy to keep our blood flow from hypercoagulation).
They need to be address as well as your BLOOD is thick enough from many infections that are in activated all at the same time .A STRONG COMBO that covers almost most important ones will make them beeing pushed in exstremeties and buy you time to keep some down whiel you eradicate the others..
IS going to take time.I have been there and I honestly HAVE NO IDEA how I survived...
My best COMBO was DRUGS ( tested from a ND ) that was most POSITIVE in my body and I recall $3000 dollars the first month only ( inspite of many detox I used to do before to keep myself alive and NO ONE in ER was touching me -they kept sending me home )to suport my organs and to keep all coinfections on hold.MY body shut totaly DOWN.
My brain WAS GONE a WHILE BEFORE THAT .So please do not give up just make a strong protocoll ( include herbs NO MATTER WHAT ..).If you can not afford them you can buy in 1st chinneseherbs.com and encapsule them yourself...and is very cheap...take high dosages ( hope you can find a ND that uses MUSCLE testing )
HH and artemisia ...should be THERE WITH YOU NON STOP ...even if in lower dosages to keep the main infections bart and babs out of floating in blood and have a party while you put some BORRELIA into cyst to buy the time.
I recall my adrenals were NUMBER one that felt due to high infection ...and MY KIDNEY that FELT totaly ...and I used to be in seisures....I feel like I was in a bad movie as is unbelivable what we go through !But you will make it!!
YOU NEED TO BE Strong for your SON.That is what kept me alive.Look at him and find your energy .That is where I found my strength wathching him sufering same way as I did .
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
I barely slept, actually my wife and I slept in seperate places.
I am vicious. All the animosity. All the pain.
To everyone out there that NEEDS to know my meds here they are: (By the way they are not new to me)
IV Doxy 150mg 2x day Oral Zith 500 mg a day Mepron 1500mg day Valium 10mg 2x day Klonopin 1mg as needed Serequil 25mg @ bedtime Coreg 25mg 2x a day Mag Glycinate 400 mg Sublingual b 12 Nexium 40 mg 2x day Lemectal 25mg 2x day Hydrocortosone 20mg 2x day Tindamax 500mg 2x day
There.... Was on Levaquin, but doc took me off recently. Was on and off for over a year.
The pain is still here, the only difference is I am still half asleep.
The pain will come, do I deal with it? I am so tired of this bull.
Really s**** gotta end.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Just called the "on call " doc again. Apparently he is saying no where in my blood works does it show Addisons Disease!
My doc disagrees with the Endo and the "on call" doc and is treating me with Hydrocortosone.
The question is even stronger now. What the hell is wrong with me, there has got to be something causing these intense symptoms.
I thought by leaving the hospital with at least the diagnosis of Addisons would be something.....
Now I question everything with no answers.
I don't know what to do. My doc is extremely bothered by me calling all the time because he doesn't want deal with it.
He doesn't want to deal with it because he doesn't have any answers. This is SCARY!
I'm afraid to call his office anymore.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
You can't give up and you know that. It's not a very good option. We all know this illness is no picnic and getting help can be even harder. Have you read the post above about adrenal fatigue???
It's an excellent one and you can call that pharmacy and talk to them to learn more. I'm sorry that you are going thru hell. Easier said then done, but working yourself up like this will only make the
situation worse. Sometimes, a smart doctor will make an adrenal dx even if tests are border line just as smart doctors will do with thyroid dysfunction. Many people have thyroid problems that don't show up on blood work and a good doctor will dx based on symptoms just like a good LLMD will do with lyme.
Try as best as you can to relax and not work yourself up about this. If you have low cortisol levels you need to avoid stress and having low cortisol levels gives you very little ability to deal with stress.
There are no easy answers with this illness and all of the issues we face, lyme, co infections, adrenal problems, candida, thyroid problems, metal toxicity are long term health problems that take a long time to fix. You have to be patient and I know it is hard. Sometimes it just gets the better of you.
I wish it were other wise, truly I do.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
I'm so sorry for what you're going through. We've been there with my daughter, many times. She also has been in the hospital month. This is a horrible disease.
You are taking a lot of medications, the body metabolizes some medications through detox pathways in the liver, my daughter became very ill due to too many meds being processed through the p450 pathway.
You are on a lot of meds, perhaps it would be a good idea to back off on some of them for a bit (obviously, not the benzos/seizure meds, you don't want to go into withdrawl).
Please take care, I'm praying for you.
Posts: 371 | From CT | Registered: Jun 2008
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posted
So was the hydrocortisone recently added? Maybe it's too high a dosage to begin with??
I take it too for adrenal fatigue. No problems, but you are very ill and in fragile shape right now.
Hang in there.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Alv
Unregistered
posted
Kreynold I am not a doctor...but with all the symtoms you have ( it reminds myself ) ..I haev had to have antiparasitic with me and even drops created from MY ND to shut up all the viruses and herpes...as THEY were all exsloding..
Is there any way you can add the malarone instead of mepron and bactrim in there...READ Dr LYMEMD.It hit me later that BACTRIM azithromax , malarone and zithromax this two combos...that come as an asnwer to me consistantly and tested by MD ( that basicly are 3 drugs and you are alsready using ones )
For some reason this MEPRON does not cover all babesia strains..and IF you look up MALARONE....covers TOXAplasma GONDI as well and babesia strains...and any malaria ( by mousquito bites - no kidding read MICROWS topic MALARIA in NORTH AMERICA....it could be there)
Bactrim covers the gram negative bacteria in combo with zithro and you can add artemisin and HH also to cover the rest parasitic ( babesiosis) and bart...and you cover all the grounds..
I made it only on ORALS and I was IN SUACIDIAL stage.
If you also have RICKETSIA TYPHY that I found an article that can come with the TICK ( from W. Burgdoferi ) than you as BACTRIN works on it.
Also if you get pseudomonas in the BITE( check my last post please -do a search today ) BACTRIM covers them as well.
AGAIN I am not a doctor..and you need to talk to your own doctor ..my combo ( If I have had to go through it again ) will be.
DOXY ( or mino-better penetration ) covers lyme and ehrlichia AZITHRO + BACTRIM =bart, pseudomonas, tuphy , babs malarone +AZITHR=FRY BUG ( protozoa) toxaplsma gondi and any unidentified BABS
add some artemisin ( parasitic ) reinforce against babs
HH higher dosages reaches the brain BART
SOmething as BANDEROL pulsing to shut them up with viruses for the moment ( HIGH dosages ) pulsing CYST buster ..up to you
I will also BE around the clock taking COLESTERAMINE to get this TOXINS out as soon as you can before you dump more toxins in your brain that is IN FIRE ...
I did the whole thing without paikillers ONLY HIGH DOSAGES of ENZYMES...that were up to 20 a day two times a day to keep my blood from clotting...
The rest will come once the BUGS are kind of in control ..and you become more stable... Leter you can JUMP when you can tolerate on very high dosages of HH up to 20 ( I did 22 ) and ARtemisia ..again it will be fantastic if you have somebody to test you ( muscle test) .
ALSO BINDERS should be around..BUT ironicly will not let the malarone to concentrate..in liver...but you definitly need SOME IV glutathione if you can ( if your second phase of the liver is slower as mine as my son) ,....take also somthing to keep the parasites down..as they travel towards the brain ONCE lyme IS SO ACTIVE.
BEEN THERE myself.
ALSO look into this found this yesterday and ordered it already .
Than I searched and found something natural that really can help you detox
in my case it came up so HIGH to use for 3 months so my son while I am preparing to hit it myself and I TEST lately to hit FRY BUG/babs .
I wish you have somebody to test this for you .Please confirm any changes with your doctor ( I am not a doctor) .I am just sharing my eksperince .
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Thanks to all that replied. I think I found the solution to my vicious behavior, Lemectal.
I called my doc again and I DO have Addisons Disease as well.
Alv: I will certainly look in to Malarone along with Artemesia. I have been thinkin about switching from the Mepron for a while, but never have.
It's so difficult for me to comprehend what is going on this past month and last night and today it has finally hit me.
I stopped the Lemectal, I'll see if thats part of the reason for all the craziness. Although I do have Bart and Babs so maybe its just the Bart rage...
I am just frustrated, scared, and feel alone. Alone in the sense that no doctor knows whats going on besides the Lyme,Bart,Babesia,and Mycoplasma along with the Addisons Disease.
I am extremely concerned about my NEW symptoms. These past two years of being diagnosed I have learned to educate myself and adapt to the pain.
These new symptoms are overbearing. They are the exact same symptoms of Heart Failure.
I looked it up and BINGO, have all of them except the fluid in my lungs that I know of.
Who knows whats going on????? All I know is I NEED and answer for my own sanity.
I am beginning to hate almost every MD I see and laugh in there face.
They have a license to PRACTICE and thats what they are doing PRACTICING, on me, on you, like test rats.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I hope you are right. It may well be that medication. While many of us need these medications, they all come with risks and side effects. I hope eliminating it gives you some relief.
I don't mean in any way to sound as if I am mocking you, but if you were really experiencing heart failure and you have had these symptoms for quite some time given that you were in the hospital for an extended stay,
your heart probably would have failed by now.
Many times we can have what appear to be cardiac symptoms that are coming from something else. It is the something else about Lyme that drives us nuts.
I may very well be the Addison's disease. Having low cortisol makes you feel like the walking dead and add lyme and co infections on top of it and you are going to feel like hell. Addisons, will make you panicky, nervous, anxious, and yes even give you feeling of heart problems. Some of it's symptoms include chest and abdominal pain among other things.
Hang in there Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Reach down deep inside and FIGHT.
Tell those germs they are NOT going to win.
Go to the ER...get medical help...for the BP and respiratory issues (elastase is to blame). Bb triggers our metalloproteinases to "pave the way". COPD sometimes happens in lyme.
Another biggie (metalloproteinase) is collagenase that happens.
And ask for HIS help too. HE is on your side.
You know who I am talking about.
Lamicital...that makes perfect sense!
Need to find a really good psychiatrist. One who is very up to date on the meds to be used to rebalance the neurotransmitters.
Tell him Bb absolutely needs sodium. Tell him Bb toxins prevent acetylcholine release. Tell him Bb uses glutamate (metabolizes)-> GABA. This is all documented. There are 5 dopamine receptors, D1=D1 and D5 and D2 = D2,D3, and D4. They are not all working.
Tell him Frontline to PREVENT lyme in dogs blocks chloride channels (GABA A and GABA C, not GABA B).
Tell him this channel is active: TRPM8.
This can all be re-balanced, but it takes someone with incredible knowledge.
Good luck. God Bless.
That is a LOT of Rxs for your liver to detox!
You are in the Northeast...can you get to ...here:
[ 04-26-2009, 07:41 PM: Message edited by: Marnie ]
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Marnie:
Wish I could, but I would have to drug myself to a zombie state due to the anxiety/panic attacks.
I don't have Primary Adrenal Insuffiecency I have Secondary.
It's basically the Lyme killing my Pituitary Gland and is not secreting enough ACTH levels to the Adrenal Glands....
It's all the same thing except my Adrenal Glands are fine. Here is the info on it:
Secondary Adrenal Insufficiency
This form of adrenal insufficiency is much more common than primary adrenal insufficiency and can be traced to a lack of ACTH. Without ACTH to stimulate the adrenals, the adrenal glands' production of cortisol drops, but not aldosterone.
A temporary form of secondary adrenal insufficiency may occur when a person who has been receiving a glucocorticoid hormone such as prednisone for a long time abruptly stops or interrupts taking the medication.
Glucocorticoid hormones, which are often used to treat inflammatory illnesses like rheumatoid arthritis, asthma, or ulcerative colitis, block the release of both corticotropin-releasing hormone (CRH) and ACTH.
Normally, CRH instructs the pituitary gland to release ACTH. If CRH levels drop, the pituitary is not stimulated to release ACTH, and the adrenals then fail to secrete sufficient levels of cortisol.
Another cause of secondary adrenal insufficiency is the surgical removal of benign, or noncancerous, ACTH-producing tumors of the pituitary gland (Cushing's disease).
In this case, the source of ACTH is suddenly removed, and replacement hormone must be taken until normal ACTH and cortisol production resumes.
Less commonly, adrenal insufficiency occurs when the pituitary gland either decreases in size or stops producing ACTH. These events can result from
tumors or infections of the area loss of blood flow to the pituitary radiation for the treatment of pituitary tumors surgical removal of parts of the hypothalamus surgical removal of the pituitary gland [Top] Symptoms The symptoms of adrenal insufficiency usually begin gradually. Characteristics of the disease are
chronic, worsening fatigue muscle weakness loss of appetite weight loss About 50 percent of the time, one will notice
nausea vomiting diarrhea Other symptoms include
low blood pressure that falls further when standing, causing dizziness or fainting skin changes in Addison's disease, with areas of hyperpigmentation, or dark tanning, covering exposed and nonexposed parts of the body; this darkening of the skin is most visible on scars; skin folds; pressure points such as the elbows, knees, knuckles, and toes; lips; and mucous membranes Addison's disease can cause irritability and depression. Because of salt loss, a craving for salty foods also is common. Hypoglycemia, or low blood glucose, is more severe in children than in adults. In women, menstrual periods may become irregular or stop.
Because the symptoms progress slowly, they are usually ignored until a stressful event like an illness or an accident causes them to become worse. This is called an addisonian crisis, or acute adrenal insufficiency. In most cases, symptoms are severe enough that patients seek medical treatment before a crisis occurs. However, in about 25 percent of patients, symptoms first appear during an addisonian crisis.
Symptoms of an addisonian crisis include
sudden penetrating pain in the lower back, abdomen, or legs severe vomiting and diarrhea dehydration low blood pressure loss of consciousness Left untreated, an addisonian crisis can be fatal.
[Top] Diagnosis In its early stages, adrenal insufficiency can be difficult to diagnose. A review of a patient's medical history based on the symptoms, especially the dark tanning of the skin, will lead a doctor to suspect Addison's disease.
A diagnosis of Addison's disease is made by laboratory tests. The aim of these tests is first to determine whether levels of cortisol are insufficient and then to establish the cause. X-ray exams of the adrenal and pituitary glands also are useful in helping to establish the cause.
ACTH Stimulation Test
This is the most specific test for diagnosing Addison's disease. In this test, blood cortisol, urine cortisol, or both are measured before and after a synthetic form of ACTH is given by injection. In the so-called short, or rapid, ACTH test, measurement of cortisol in blood is repeated 30 to 60 minutes after an intravenous ACTH injection. The normal response after an injection of ACTH is a rise in blood and urine cortisol levels. Patients with either form of adrenal insufficiency respond poorly or do not respond at all.
CRH Stimulation Test
When the response to the short ACTH test is abnormal, a "long" CRH stimulation test is required to determine the cause of adrenal insufficiency. In this test, synthetic CRH is injected intravenously and blood cortisol is measured before and 30, 60, 90, and 120 minutes after the injection. Patients with primary adrenal insufficiency have high ACTHs but do not produce cortisol. Patients with secondary adrenal insufficiency have deficient cortisol responses but absent or delayed ACTH responses. Absent ACTH response points to the pituitary as the cause; a delayed ACTH response points to the hypothalamus as the cause.
In patients suspected of having an addisonian crisis, the doctor must begin treatment with injections of salt, fluids, and glucocorticoid hormones immediately. Although a reliable diagnosis is not possible while the patient is being treated for the crisis, measurement of blood ACTH and cortisol during the crisis and before glucocorticoids are given is enough to make the diagnosis. Once the crisis is controlled and medication has been stopped, the doctor will delay further testing for up to 1 month to obtain an accurate diagnosis.
[Top] Other Tests Once a diagnosis of primary adrenal insufficiency has been made, x-ray exams of the abdomen may be taken to see if the adrenals have any signs of calcium deposits. Calcium deposits may indicate TB. A tuberculin skin test also may be used.
If secondary adrenal insufficiency is the cause, doctors may use different imaging tools to reveal the size and shape of the pituitary gland. The most common is the CT scan, which produces a series of x-ray pictures giving a cross-sectional image of a body part. The function of the pituitary and its ability to produce other hormones also are tested.
[Top] Treatment Treatment of Addison's disease involves replacing, or substituting, the hormones that the adrenal glands are not making. Cortisol is replaced orally with hydrocortisone tablets, a synthetic glucocorticoid, taken once or twice a day. If aldosterone is also deficient, it is replaced with oral doses of a mineralocorticoid called fludrocortisone acetate (Florinef), which is taken once a day. Patients receiving aldosterone replacement therapy are usually advised by a doctor to increase their salt intake. Because patients with secondary adrenal insufficiency normally maintain aldosterone production, they do not require aldosterone replacement therapy. The doses of each of these medications are adjusted to meet the needs of individual patients.
During an addisonian crisis, low blood pressure, low blood glucose, and high levels of potassium can be life threatening. Standard therapy involves intravenous injections of hydrocortisone, saline (salt water), and dextrose (sugar). This treatment usually brings rapid improvement. When the patient can take fluids and medications by mouth, the amount of hydrocortisone is decreased until a maintenance dose is achieved. If aldosterone is deficient, maintenance therapy also includes oral doses of fludrocortisone acetate.
[Top] Special Problems Surgery
Patients with chronic adrenal insufficiency who need surgery with general anesthesia are treated with injections of hydrocortisone and saline. Injections begin on the evening before surgery and continue until the patient is fully awake and able to take medication by mouth. The dosage is adjusted until the maintenance dosage given before surgery is reached.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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It makes me heart sick reading your struggles, I am so sorry. This disease bites, hate it, hate it.
I have so often wanted to give up - I get it. Please hold on to the hope that this is your lowest of lows, but that things WILL look up and get better. I just took a 3 day break off of abx while changing to a new protocol; I am far from well, but feel so much better right now. In my 13 months of tx, don't think I've ever herxed...now am thinking I've just been in a constant herx the whole time!
Please keep fighting the fight, it's a tough road but know and believe that it will get better. Sending healing thoughts your way. TS
Posts: 566 | From West Coast | Registered: May 2008
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Try sublingual vitamin B6 (you dissolve it under your tongue) - Source Naturals makes it - to combat the anxiety/panic and
get to NYC.
Everything your body is doing, though these things on the surface appear destructive, also have some protective reasons for happening. Your body is trying hard to fight very serious infections.
In *excess* they are not good (TNF alpha and IL 1B are the biggies)
Rebalancing takes an expert. You are geographically close to one of the best doctors.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Marnie:
I take Sublingual B12 Complex and it covers all that.
I think mine is Source Naturals as well. Thanks for the help.
It has been a trying time for me these two days more trying than ever before.
We celebrated Easter today since I was in the hospital for so long and missed it with my family. It was quiet and sad.
I just looked at my cell phone and saw an Easter picture of my son while I was at the hospital with a sign that said" Happy Easter Daddy" with him smiling.
I'm glad I didn't see that at the hospital, it would have torn my heart. We had no Easter hunt this year, Daddy was in the hospital or as he says " Daddy at doctor" the whole time I was in the hospital which makes me cry just writing it.
I don't know whats going on with my body or with his because he has LD as well with Bart. I am scared to death and cry almost everyday. Of course I have to hide it, but I do. I never was this emotional. I was always the tough guy never crying, now the littlest things set me off crying.
I just pray God takes care of my family and hopefully one day we can live a normal life without pinching pennies or hovering in the house not going anywhere because I am too petrified to go outdoors.
It's all sad, that picture killed me with him in his room smiling with the sign. Since he is almost 3 now we were going to have an Easter egg hunt with him, but I wasn't there.
I want a normal life, I want my son to expierence things I never had. It will happen, I will make it happen, I don't care if I die tryin'. IT WILL BE DONE.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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bettyg
Unregistered
posted
roy, that was so touching about your son's comments and the photo of what he made you, etc!!
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posted
You might want to read The Pot Belly Syndrome by Russ Ferrell. It is all about Addison's disease being caused by bacteria. He keys on chlamydia . It has alot of interesting info. I think I have a copy(if I didn't give it away). If you would like it pm me and I will look and if I have it would be glad to mail it to you.
Posts: 433 | From new york | Registered: Dec 2004
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posted
I'm going to suggest something that may not be popular with everyone here. But given that you are at a bottom, physically and mentally, check yourself in to a psychiatric facility, or even go to the ER and tell them straight up you are at bottom mentally and what you are feeling like mentally.
Once an inpatient in a psych facility, you will get lots of attention, and they will be more likely to get serious about addressing your physical issues because they will know that your deteriorating physical state is what's causing your mental state.
I know it's a big step to take, but it may be the thing that gets you the attention and care that you need. This happened to me, and to friends of mine, and enabled me and others to get through some real rough patches.
Please hang in there for your family and yourself. You are WAY too young to be cashing in.
-Paulie
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
paulieinct:
Thanks for your help, but I have a fear of those facilities....
I understand that they will be more inclined to help, but I don't want to do that to my family.
I appreciate your help and advice, but with the support here and at home, I will make it.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I feel so bad Krey, please let us know what you ended up doing? I hope you are okay. I hate this d**m disease!
posted
Read over your list of meds. I think the big piece of the puzzle which is being ignored is hypercoagulation. If you don't want to do the heparin shots then something like Wobenzyme or Vitalzym could make a big difference.
As for the psych hospital aspect -- I would definitely consider that a last resort. Hubby had 3 psych admits early on in his illness and got zero medical attention in connection with them. Just more meds which only created more side effects.
As for your mood swings -- adjusting to the hydrocortisone could exacerbate that problem. Personally I think 10 mg of Cortef 4 times a day would work better than 20 mg 2 times a day. I am slowly decreasing hubby's Cortef -- he is down to 20 mg now after being on 30 mg for about 6 months.
I still think an ACAM doc who is paid by the hour would be the best alternative to help you navigate the medical system. You just have to learn how to work the system. Yes it is a pain and takes energy, but bucking the system just doesn't work to your advantage.
Hang in there.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I agree with Bea on all fronts. Neprinol is also very good and what I now use. It's like wobenzym with nattokinase but wobenzym is also an excellent product.
I've seen a good friend get put in a psyche ward too many times and get drugged up and taken off all her lyme medications trying to convince her she has MS and was bi polar. They just don't treat lyme patients well in the mainstream medical world.
I also like the idea of taking adrenal meds 4x a day as that follows the normal rhythm of the adrenal glands. Most saliva tests have you test four times a day.
It's so sad how these mainstream doc's know nothing about how to make us better. They are good at surgery, that's where U.S. doctors excell. On occasion you will find one who thinks outside the box but in general I stay far away from them. I've always used ACAM doctors.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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bettyg
Unregistered
posted
roy,
bea siebert is the most dedicated caregiver to her husband, steve! she has been there supporting and RESEARCHING endlessly for him since his onset.
they've been to many different states, and she doesn't let any dr. get by treating them poorly, etc.
in face, 1 major dr. they had was a speaker at a conference out of state. bea attended and spoke about how he had treated her husband in front of all attendees.
so bea is a well-seasoned caregiver support/leader for her hubby. so listen to her too; she's been there; done that so many times.
roy, again; my best and love to you, katie, and your precious son. HANG IN THERE!
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Thanks for all the replies... I will call ym doc about the Coritsol and see if I can take 10mg 4x a day.
I will also look into Wobenzyme, I have hear of it, but is it a script?? I know the Malarone is and I will be asking my doc to take me off off the Mepron and put me on Bactrim and Malarone.
Thanks for all your help guys!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Hope your feeling better today. Hopefully each day will get a little better.
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
wobenzym is not a medication it's a supplement.
Must be taken on a empty stomach.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Thanks Abxnomore....
I am going to run all this past my doc to make sure I am not going to have any interactions.
I actually just bought Artemesia, but am concerned to take it with my meds.
I know most all supplements have to be taken on an empty stomach.
LisaS:
I'm hanging in there, just overwhelmed and at the point where I am willing to try anything to feel comfortable. Thanks for asking.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
No all supplements do not have to be taken on an empty stomach. As a rule herbs do and minerals and amino acids but there are always exceptions.
Other supplements require food. That is why the advice of a good clinical nutritionist, ACAM doctor or ND is important. Lot's to learn.
In the case of wobenzym you want to take it on an empty stomach to due the right job. If you take it with food it will act as a digestive enzyme and it is way too expensive to be used that way.
I'm sure you can take artemesia and wobenym with your medications but I am not a doctor so best to consult with yours.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Abxnomore:
Wow.... I just took my first pill of Artemesia and boy I feel something!
I'm liked whacked out, more than normal. Do people take "Cats Claw" and Artemesia together?
I get them from the Allergy Research Group.
Just curious if both can be taken together.
Thanks for the help.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
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When I got to the point your at, I just started laughing at everything, trying to find the humor in the seemingly depressing. You'll be fine, you just need adjusting! Stay strong.
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roy, katie, and son: grouphug: ![[Big Grin]](biggrin.gif)
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