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Posted by UnexpectedIlls (Member # 15144) on :
 
So a few months ago we noticed that I had this weird hump on my neck... We thought nothing of it because we figured it was from being bedridden. Well my neck started hurting BAD.... I was up all night and couldn't move my neck...

So I went to ER this morning.... More bad news.

I have what is called a Buffalo hump that is probably caused by Cushings Disease. I cannot beieve this is happening to me.

I never ever ever had health issues unitl I had my baby. Now I have late stage lyme (maybe), Bedridden for almost 2 years, and now probable cushings disease. HOW did this happen???

I am so scared... They say it can be caused by a tumor on the pituitary gland.... I am nervous wreck and way to sick to have surgery if I had to.

I am sick and now I look deformed... I just cannot deal with all of this. I am losing my mind.

Is this normal with lyme??? This is just too much [Frown]

This is my new neck [Frown] Sorry about my laundry in the back!

 -

[ 05. November 2008, 03:17 PM: Message edited by: UnexpectedIlls ]
 
Posted by oxygenbabe (Member # 5831) on :
 
My opinion:
You're on too many toxic drugs.
You are not doing anything about the mold in your house.
Your body is under too much assault from the above.
 
Posted by KS (Member # 12549) on :
 
I actually look at this as possibly encouraging news for you!! If I recall correctly, you haven't been responding to antibiotics very much....maybe Cushings is the cause of your symptoms and that with proper treatment or removal of the source of the issue, you will be back to your normal self again.

Cortisol levels that are too high or too low can really make people feel very sick. Did they take your cortisol level or did they make the diagnosis based on the hump?

Is it possible that lyme could be messing with your hormones, sure....however, both can be dealt with independently and hopefully will have you feeling much, much better.

I'm sorry it has you stressed out though but just think, you now have something to look forward to maybe correcting that will gain you your life back again!!
 
Posted by ItCantBeTrue (Member # 17151) on :
 
Could the Lyme cause the adrenals to be out of whack?

Whatever the cause, I hope this gets treated quickly and you feel better soon... [group hug]
 
Posted by lymednva (Member # 9098) on :
 
Agree with the others that Lyme, could be the cause of your adrenal problems.

I know many here, including myself, have at one time or another dealt with adrenal fatigue, which means low cortisol levels. Cushings is just a step lower than that.

I do hope that treating Cushings will help return you to better health.

Sending you hugs [group hug]
 
Posted by UnexpectedIlls (Member # 15144) on :
 
Thank you all SOO much for your support and words of encouragment.

The only problem is that my neuro symptoms cannot be explained by Cushings. My anxiety, weight gain etc can be, but my conatsnt head pressure, verring off to the left, and my various other symptoms I deal with on a daily basis could not be explained by cushings.

I have read that cushings causes WAY too much cortisol in the blood, not too low.

I just pray this all gets figured out. I told my fiance I am writing my will. That is how sick and disabled I am, and how much hope I have lost... pretty sad

Thanks again
 
Posted by Peacesoul (Member # 13709) on :
 
I just watched a few of your youtube videos
You have an awesome voice. My sister is an Opera singer.
Well done

As far as Cushings, well when one thing happens in the body, like lyme, soon many other ailments can follow if the body is not strong.

It's like when you bring your car in to get the battery changed, but you've driven around with the old battery for so long, other parts of the car are now out of sync.

I don't know your lyme story, but what meds are you on? And are you detoxing?
Do you have a clean diet?
 
Posted by KS (Member # 12549) on :
 
Cushings can cause a lot more issues than weight gain, anxiety, etc. I think you'll find, if you do a little more research, that it can cause other neurological issues (i.e. headaches, dizziness). Also keep in mind that if your cortisol isn't being kept in check, other hormones are not being properly kept in balance either so you could have a couple related issues happening. Make sure you get yourself a good endocrinologist!!

Whether it is the lyme causing the imbalance or not doesn't really matter at this time....try to correct the cortisol problem and see what happens.

I'm not saying this is definitely the answer for you BUT at least you have another road to go down that may give you some relief.

I know you are feeling overwhelmed now but I see it as an opportunity for you to have more hope!!
 
Posted by onmyway (Member # 17607) on :
 
Shandy,

I am having the same problems. I do not however have the lump on my neck. Where exactly is the lump front or back? They say it can be like a hump on the back of the neck!

I have an adrenal adenoma that keeps growing and the density of it has gone from 0 to 88 which is very dense for an adrenal adenoma! I am going in for surgery to have it removed within the next few weeks.

I am like you I am not having a lot of luck with Antibiotics. As long as I am on IV Antibiotics I am okay but once I stop I relapse. It is very frustrating. I heard though that once you address the adrenal or in your case pituitary issues then your body takes better to the antibiotics. The endocrine system can really screw you up as well! So maybe some of your symptoms are from the Cushings! I think you should do the surgery! It may address a lot of your issues! That is the main reason I am doing it, well that and the fact that my adenoma doubeled in size in one year and has something in it!

I am a little scared but just ready to get it over with!!! The symptoms from a messed up endocrine system are very similar to Lyme and it's symptoms. I have gained 35lbs in the past 9 months and my blood pressure is consistantly high. This all came on at the same time! Not to mention I have a very full feeling right below my sturnum all the time and get very bad spasms when swallowing food. These are just some of my issues.

I prey my adenoma is not cancerous but i guess i will just have to wait and see!

I feel your pain and I totally understand. It is all too much!!!!!!

Like the others I am here for you!

Please take care!
Blessings!
Onmyway
 
Posted by Alv (Member # 15192) on :
 
Shandy do not be alarmed!

I had the same thing ( swolled up in my neck) .It was a cyst .Also in my wrist that finally shrinked .Stayed there for a while .It was scary but not for me .Having lyme and coinfection -I would not be surprised.

Ok...check the pictures below .If you see all of them , you would realise that this pictures are SO BART /Tick borne illness related.
You have the same stretch marks...And you know you have BART.

If you have read Dr J D book about BART you will see similarities.My biotensor confirmed that was due to BART.Lymp nodes kind of .I had that in my neck ( swolled up ) and in my wrist BIG ONES and Scary loocking.

I am not sure you are aggreasive on your bart treatment.From my eksperience , I would be agreasive in BART treatment than any other thing .

http://cushings.homestead.com/Photos.html

I would not care for my LONG LIST of the disease that they name on me for years..I KNOW what it is and I am fighting it.

So please do not search for other labels BUT KEEP fighting ( BART) first and the rest.

Read their stories and you will see that they have LYME and bart and..x.y.z... TICK BORNE ILLNESS ,etc
 
Posted by Alv (Member # 15192) on :
 
Oh by the way , I always would have less brain blood flow ( due to the beck of the neck) nousea and could not hold my head straight.

My HIGH DOSAGES that were crazy dosages CHASING bart , and muco did brought that lump back several times until was GONE and is almost non noticable.They would swollow up on A BIG HERX and I was almost passing out.I knew it was working and I kept fighting it.
 
Posted by Keebler (Member # 12673) on :
 
-

I am so sorry to hear of all this. I do hope you get the best advice and treatment.


Someone asked: " Could the Lyme cause the adrenals to be out of whack? "


Most definitely. Many LLMD/authors have written about that. It is one of the most troubling aspects of lyme, actually, as the endocrine system play a huge roll in our existence and comfort.


The book below also discusses endocrine stress in detail relating to chronic infections (lyme; Cpn; etc.). This book could save the life of many a lyme and Cpn patient.

There are 14 pages mentioning Cushing's - including a full 6-page chapter. Yes, it could be caused by a pituitary tumor - but not necessarily. And, yet, tumors of other endocrine glands (or even elsewhere in the body) can cause this, too. Of course, you'd want to rule all that out, but is also can be related to the endocrine dysfunction caused by lyme.

You need to have your ACTH levels monitored (p. 142 of the book).


People who have been on steroids have a greater incidence of Cushings - as do those under more stress and high cortisol.


I hope you have your LLMD working on this with whomever is treating the Cushings.

While lyme and stress connections from that can have far-reaching effects, not everything is lyme related. Still, having the LLMD on your team - every step of the way - is vital.

Good luck.


(through the Amazon link here and right on to the book's page:

http://tinyurl.com/6xse7l )


The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, And Heart Disease (Paperback) - 2005


by Russell Farris and Per Marin, MD, PhD

8 customer reviews and you can look inside the book

about $13.00 -

==

Oh, the author says that for one patient who developed the curve to the back of the neck, after stopping steroids, it disappeared over a year's time. So, for those under stress, it might be that if the cortisol could be controlled, the swelling of the tissue might have a chance to reduce, too. Just my thinking.

There is always hope.


-

[ 05. November 2008, 04:24 PM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
--


Two organizations suggested by the author above:


http://www.cush.org


CUSH


Cushing's Understanding, Support and Help Organization is a non-profit organization committed to bringing information regarding Cushing's and its related diseases into public awareness to help facilitate early diagnosis, treatment and recovery. . . .


===============


http://csrf.net


CSRF - Cushing's Support & Research Foundation:


Non-profit organization provides information for patients on the medical aspects of Cushing's via newsletters. They also help put people in contact with . . .

--

From the CSRF home page: SEE PHOTOS - before and after treatment. Amazing. Hopeful.

And:


Cushing's is a little known disorder that causes a wide variety of symptoms, including abdominal weight gain, a puffy round face, muscle weakness, diabetes, high blood pressure, and many other symptoms.


Cushing's symptoms occur when the body is over-exposed to a hormone called cortisol. Cortisol is corticosteroid hormone that is naturally produced by the adrenal gland.


While the most common cause of Cushing's is exposure to corticosteroid medications such as prednisone and others used in injections and creams, a small percentage of the population develop Cushing's due to a tumor on the pituitary gland, the adrenal gland, or elsewhere in the body.


Because Cushing's caused by tumors is a relatively rare disorder and some of the symptoms are common in the population, many patients with Cushing's are not tested for the disorder and continue to go undiagnosed. . . .


=====================


http://csrf.net/page/diagnostic_testing_for_cushings_syndrome.php


DIAGNOSTIC TESTING FOR CUSHING'S SYNDROME


-

[ 05. November 2008, 04:22 PM: Message edited by: Keebler ]
 
Posted by WildCondor (Member # 434) on :
 
try to calm down! You need to get your hormones balanced out by your LLMD and meds, you'll be fine. This is common stuff!
 
Posted by Alv (Member # 15192) on :
 
Yes that is exactly what I had ..and the scary one that was as big as a nut came up on my wrist..

Is gone now..so relax :)YOu do not need to scare yourself -is not going to do you any good.
 
Posted by Keebler (Member # 12673) on :
 
-

www.ncbi.nlm.nih.gov/sites/entrez

PubMed Search:

Cushing's Syndrome - 11580 abstracts

Cushing's Syndrome, infection - 207 abstracts


Cushing's, neurological - 109 abstracts (Especially see #9: Neurological and psychiatric aspects of some endocrine diseases.)


Cushing's, borrelia - zero

Cushing's, lyme - zero


Borrelia, endocrine - 2 abstracts

Lyme, endocrine - 2 different abstracts

(Note: Endocrine dysfunction in lyme disease has been addressed by many ILADS authors. See www.ilads.org or www.lymediseaseassociation.org for specific research.)


Cushing's, stress - 152 abstracts

Cushing's, sleep - 40 abstracts

Cushing's, recovery - 142 abstracts

Cushing's, vitamins - 22 abstracts

Cushing's, herbs - 2 abstracts. One of those:


http://tinyurl.com/695e7q


The role of nutritional therapy in the treatment of equine Cushing's syndrome and laminitis. (2001) - Harman J, Ward M.


Excerpt: " . . .The successful treatment of equine Cushing's syndrome is one of the best examples of treating a disease using the holistic approach. . . ."


=================
=================


http://www.vrp.com

Vitamin Research Products Search:

Cushing's - 4 articles


www.vrp.com/articles.aspx?ProdID=art563&zTYPE=2


Adrenal Maladaptation Syndrome: A Sweet Solution For Coping With Stress


----


www.vrp.com/articles.aspx?ProdID=art680&zTYPE=2


Stress: Natural Protection and Recovery


----


www.vrp.com/articles.aspx?ProdID=art469&zTYPE=2


Hormone Salivary Testing:Key To Improving Hormone Balance


----


www.vrp.com/articles.aspx?ProdID=art123&zTYPE=2


Adaptogens: Natural Protection for Stress


-

[ 05. November 2008, 04:56 PM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
-

While "Cushing's" is not in the index, there are many pages on endocrine matters in this book.


This book, by an ILADS member LLMD, holds great information about treatments options and support measures:


http://tinyurl.com/6lq3pb (through Amazon)

THE LYME DISEASE SOLUTION (2008)

- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)

You can read more about it here and see customer reviews.


Web site: www.lymedoctor.com


=================================


Someone above said they were having problems tolerating treatment. Singleton's book can help explain some things and the two books below may also be of assistance in explanation and support, especially of the endocrine system:


http://tinyurl.com/5vnsjg

Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections - by Stephen Harrod Buhner

Web site through: www.gaianstudies.org/lyme-updates.htm


==================================


http://tinyurl.com/5drx94

Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang

-web site: www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro through www.hepapro.com


-
 
Posted by UnexpectedIlls (Member # 15144) on :
 
Keebler-- Thank you so much for all of this information!! [Smile]

I wish it was as easy as getting all my hormones together.. Unfortunately it can be much more serious than that.

80% of the cases of Cushings are caused by a Pituitary tumor... even better than that is the chance of the surgery not working or having a regrowth soon after.... A surgery which I am way too ill to partake in.

I am trying to be strong, but too much has knocked me down and I am having trouble getting myself back up.

I know I cannot live in the past, but cannot help but wonder where that healthy, vivacious, adventurous woman went... The one who was never sick and had more energy than a room full of people, who loved life, and who couldn't wait to start her new life....

I guess this is the start of my new life. ONe I never saw coming, and one I NEVER though in a million years would happen to me.
 
Posted by Keebler (Member # 12673) on :
 
-

Shandy,

Are you being treated by a LLMD?


the percentages I've found are much lower than 80% but, either way or somewhere in between, you either do or do not have a tumor.

You need to get checked out. But, even if, the CAUSE matters. As you have lyme, a LLMD's input is absolutely vital.

Even if a tumor is there, surgery may not be needed. If the underlying cause is addressed, tumors have been known to shrink. Really.

And, even if surgery were to be needed, with the guidance of a LLMD, it could be a success.

And, even if this is from a tumor, you still need to learn much about how to support your endocrine system. There is so much new information that is very hopeful. Research on Rhodiola is very exciting.

The most important thing, though, is to get the right treatment, specifically for your body. Not too much. Not too little.


You are 26 years old. This is a huge matter, I know, but in a few years, you may be out there dancing in the streets. Really.


I hope you can find some sense of peace as you settle in to learn more and find your team of specialists to guide you in decisions.

I do hope you can settle in for good sleep as that is absolutely essential in the case of Cushing's - I was just reading about that.

Take care, now.

-

[ 05. November 2008, 06:28 PM: Message edited by: Keebler ]
 
Posted by MusicMan (Member # 11966) on :
 
Hi Shandy [Smile]

I just said a prayer for you.

Hang in there girl, you can beat this.
When things get bad that's when you have to get mad! Say GRRRRR! Again GRRRR!!

I'm still very sick with an unbelievable Herx but I'll look for you in chat tonight.

Steve
 
Posted by janis1023 (Member # 15942) on :
 
My dear, the words you speak could be from my mouth in regards to your past self. Please don't forget that vibrant woman which was you, just keep trying to get her back.

That is my motivation....I want my life back and will not stop until that occurs. It doesn't mean I won't bawl and squall and hate this fat swollen stranger Lyme has made of me sometimes, but I know who I am and this is not it.

We must keep trying. With support and knowlege and the right doctor, it will happen.

Jan [kiss]
 
Posted by Lymetoo (Member # 743) on :
 
What a rotten deal. Did they tell you what the next step is??

[group hug] Shandy [group hug]
 
Posted by JillF (Member # 5553) on :
 
I just watched Mystery Diagnosis where the girl had Cushings and had the same exact thing going on with her neck

Lyme causes SO much destruction to our bodies. There are so many symptoms and just weird things that it can cause. I'm always worried I will assume one or several symptoms are just the Lyme and find out that there is something else going on that has nothing to do with Lyme (or was caused by Lyme or the stress on my body, etc)

So, look into it. Find a good specialist. Talk to your LLMD. Take precautions before assuming it's just due to your Lyme. It could be all for nothing but just make sure imo

It's amazing what this disease does to us

Anyways, that's my advice

Oh, yeah. Don't freak out. Until you know what exactly is going on for sure, don't waste your time worrying and planning your death in your head. Enjoy life. Be proactive, be cautious, take care of of your future if something does happen but you should be doing that anyways - we can get hit by a car or have some type of horrible accident anytime. There's a time for worry and that time is not until you are positive what you have. I have wasted SO much time worrying and thinking I was going to die over the years and I'm still here. All that time I spent upset was useless when I could have spent it doing things I like, playing with my child, spending time with friends and loved ones. I probably just made myself sicker with all the worrying and extra stress I put myself through
 
Posted by lymielauren28 (Member # 13742) on :
 
Shandy,

I said a prayer for you too. I'm so sorry that you're having so much difficulty...I hope you get things figured out soon. In the mean time the most important advice I can give is to stay hopeful. You have so much to be hopeful for and I truly believe with all my heart that you will see that girl again.

I'm three years into this mess and I have been where you are now. I thought I was dying...and I was. Many nights I layed down and closed my eyes and didn't think I would awake in the morning. I wanted to live so badly, and I clung to life, but my body had had it. I was 25 and it was the scariest experience of my life.

By the grace of God I made it, and while not cured by any means I'm functional. You will get there!!! As impossible as it seems, in your darkest most hopeless moments HANG ON!!!

Lauren
 
Posted by METALLlC BLUE (Member # 6628) on :
 
I know another Lyme patient that developed Cushing's as a consequence of her infection. WildCondor is correct. This happens. Dr. H usually tests endocrine levels, pituitary, adrenal glands, thyroid -- etc. I know he provides treatment, because my girlfriend had an inbalance causing excessive cortisol levels in the evening and extremely low in the morning.
 
Posted by bettyg (Member # 6147) on :
 
shandy, [group hug] [kiss]

i have a hump just like yours; no one has ever told me what it was, etc.
it's where all my neck pain comes from...

good luck!
 
Posted by onmyway (Member # 17607) on :
 
Shandy,
Thank you for the picture! I know it can be very scary. The endocrine system basically runs our body so look at this as a blessing! Maybe once they fix this you may start to feel like that old vibrant self again!

Did the ER do a CT scan or MRI or did they just look at your neck and say that was what you had?

Please stay positive! Look at all the support you have! Even Wild Condor came out and gave you her advice! If anyone knows scary and very sick it is her!!!!
It will get resolved and you will be OK!
God Bless!
Onmyway
 
Posted by Shosty (Member # 12232) on :
 
Aside from medical issues, which many have written knowledgeably about here, I wonder if you have considered some counseling by someone who understands chronic illness. It can be helpful.

Some practitioners have alternative methods to deal with feelings that come with being ill (such as grief at losing your former self): things like WHEE, EMDR, EFT (sorry, they all have acronyms) that work with the energy in your body, and can be learned in one session.

There are supplements (and meds, of course) but you probably don't want to mess with your physical systems right now!
 
Posted by MY3BOYS (Member # 17830) on :
 
sorry you are going through this. what a great site this is to be able to get support and
feedback when scared.

cushings can be due to internal or external
issues. some medications can induce cushings

before any surj. is concerned you should have
a good work up with endo, scans, etc. to
determine the etiology of the cushings in you
right now.

please see good endo. if hormones are out of whack they can and will cause havok !!
if you find out it is hormone (not tumor i pray for you) there are alternative like bio-identical
hormones therapy you can consider with LLMD input of course.

sorry the ER doc jumped to worst case senerio with you, could have educated you better.

also, there is new research suggesting the presence of bacteria with cell wall deficiency noted in tumors....google this (dr cantwell is just one doc who has studied this)food for thought. of course it is controversial at this point..but controversy is not new is it?? our science
has a way to go to fully understand some things
...like lyme and the effects of this kind of infection on the body...best wishes
 
Posted by evgen (Member # 14118) on :
 
Hey Shandy,

My wife has the same thing. MDs say it's osteochondrosis in her case. But we do know it's lyme related one.
Make sure you are under treatment by LLMD. I was shocked when I saw your video with LOTS of pills you take. I've never seen tooo many pills prescribed to a person.
Take care.
 
Posted by UnexpectedIlls (Member # 15144) on :
 
Thank you so much for all of your support... As you know I am very nervous about all of this. Reading up on it is eve worse.

I just got the call from my LLMD and they will be working me up for cushings.

I am scared about having some sort of tumor... [Frown]

We'll see... I just hope and pray for the best.

Shandy [Smile]
 
Posted by Parisa (Member # 10526) on :
 
Shandy,

I know you're scared but now maybe you are starting to get answers and some of the answers may eventually lead to you improving.
 
Posted by laura j (Member # 14257) on :
 
Shandy,

I don't come one here as often as I once did but something made me think of you today so I checked your recent posts and found this one. I'm so sorry to hear you are going through this!!! [Frown]

I totally think Lyme could cause Cushings. A few years before getting my dx, my cortisol levels were high. I looked up high cortisol and also freaked out when everything pointed to Cushings. My dr. at the time said that I didn't have any of the "Cushing-oid" features of a Cushings patient.

He recommended I go see an endocrinologist and I never went. Now fast forward many years later I've been dx w/Lyme. I was as sick as you are/have been but am doing better these days. Still not in remission but a lot more functional.

I'm sure that you will get to the bottom of this w/the help of your LLMD and endocrinologist. I see this post is from Nov.8. I hope you are well, or as well as can be expected. What's the latest?
 
Posted by TerryK (Member # 8552) on :
 
I have a hump just like yours. I've had it for years and I don't have cushings (I've been tested many times), however I do have lyme.

I think the hump on the neck is common in people like us. I know I've heard a lot of people with fibromyalgia mention it.

Mine feels very fluidy to the touch. Does yours?

Terry
 
Posted by Shosty (Member # 12232) on :
 
I haven't read the rest of the posts, but just want to say that anything going on in the neck, in terms of swelling or inflammation or pressure, can cause neuro symptoms, partly due to pressure on the brain stem. A chiropractor might be a good person to consult on this, not for an adjustment, which could be risky, but for evaluation of whether the hump could be causing some of your symptoms.

If so, then you might not have Lyme, which would be good news.
 
Posted by DebAz (Member # 18039) on :
 
Here is a site that tells you the 7 items the hump in the back can be..

http://www.wrongdiagnosis.com/sym/buffalo_hump.htm
 
Posted by Kathy Boss (Member # 3062) on :
 
First let me say how bad I feel for you. I read your words and it was not that long ago I planned my funeral, feeling the same way.

I have not read all of your story but I have read some.

I am not an expert just like most people on here are not.

We are just sick people that share in the same problems.

Lyme, co-infections or something else. Whatever the bug is, you can treat just by giving back to your body what has been robbed by the bug's that feed on you. Nutrients.

Think of it this way, the sicker you feel, the more you feel like death is at your door the more your body is telling you it needs help.

Who knows what the real answer is if there is one....but one thing for sure that can not hurt you is nutrition.

I can't help but notice you said you never got this sick until you gave birth.

We have lot's of bug's in our gut. We always have, be it Lyme or something else. Your vitamins and minerals get depleted by the very bug's that live in us and feed off of you, the host.

Use only very high grade products. I dont know what your money situation is but do what you can when you can. Slowly. And stick with it. For months.

Oxy forte 500 by american biologics is an enzyme supplement that will act as catfish in your blood eating all kinds of crap. 2-3 tabs three times a day.I took 90,000 mils a day. Add a high potent mutivitamin from a good source like douglas labatories. I took 3 a day plus 6,000-10,000 a day Vit C.

I lost weight, felt great and took advantage of that success for years. I should have stayed more faithful to the nutrition.

Believe me I'm back at it now, having to do it all over again.

Now all this nutiriton was after I took a very very intense tretament in another country for Lyme......the pathologist that treated me afterwards in the US explained simple facts to me that worked.

I needed lot's of help once I got home to the US.

I'm not saying this will cure you or fix what you have going on now but maybe it can give you better quality of life.

If you have a naturalpath close to you that does UVBI blood treatments do your best to find one. Look it up on the internet and see what you can find.

UVBI has been used in Europe for many years, mainly Germany. For infections, colds, Lyme ect... A very small amount of blood goes thru an ultiviolet light (which removes bacteria)then the blood goes back into you. The small amount of "clean" blood activates blood cells as it is introduced back into the blood steam.

No big deal at all and will cost you maybe $100.

Antimicrobial IV's and all this other toxic stuff just adds to the problem that you put in you. Don't do it.

Although there are clincs that people have gone to and have paid out the nose for every IV imaginable and toxic treatment have worked.

It's hard to tell. it's different for all of us.

I do know this. The pathologist I saw did the very basic and simplest things. Enzymes, vitamins, minerals, Vit C IV's, Chleation IV's and UVBI light treaments for 9 months. 3 months into it my life was so much better.

I have to tell you this though, another intense treatment before that is what put me on my feet.

This protocol just enhanced it and gave me my strength back.

Our degree of sickness varies with us all.

Maybe just the basics can do it for you or at leats give you abetter quality.

I have been reading about the new bionic treatment in Germany, if you need a room mate let me know I'm looking into it.

It's not a toxic treatment, it can only help and I'm a firm believer in giving it your all.

I was dx as chronic late stage Lyme with 2 co-infections.

I have always known I got a second chance at life with my first treatment.

I took it for granted. Here and there when some problems came back I came running back to Lymenet with questions.

But look, I came out of a wheel chair with my eye sight. For 6 years.

I'm willing to do it again.

My docs again want to pump me full of abx and other drugs.

It does not have to be this way.

I wish you all the luck and I did not mean to burden you with my stuff when this thread was about you.

I am serious about Germany though, email me if you are thinking about it.

Kat
 
Posted by tabbytamer (Member # 3159) on :
 
Shandy,

You're being to hard on yourself. My laundry pile is much bigger than yours. It wouldn't even fit in the picture. Not even with a wide-angled lens. Or by taking a bunch of shots and then taping the prints side-by-side. [Wink]

Seriously, though, sorry you're going through this stuff. If it is Cushings, I'm sure your LLMD could give you the name of an Endocrinologist he/she has worked with. Endo problems are very common among Lyme patients.

Or post for an Endo doc over in the Seeking a Doctor section?

Or maybe check with some on-line Cushing's support groups to refer you to a good Endo doc in your area?

Try to hang in there. Don't hesitate to ask for help or support. [group hug]
 
Posted by laura j (Member # 14257) on :
 
Does anyone know the latest w/Shandy? Is she ok?
 
Posted by UnexpectedIlls (Member # 15144) on :
 
Hi all! Sorry I haven't been on in a while.

I am happy to say that I have taken charge of my health and life and I am doing better than I have since I got sick 2 years ago. I stopped all abx and am seeing a chiro and doing natural treatments. I appreciate all of your deatailed and caring replies!! My chiro says she thinks the hump is structural and it has gotten smaller. Also, My neuro stuff has gotten SOOOO much better since seeing this chiro.

I am thinking about going on the Zhang protocol, but for now I am on herbs and also juicing and eating a raw vegan diet. I also just did my first treatment tonight with the lightworks.

I am in what I call 'Healing Bootcamp" and will be checking in from time to time. I am so happy and proud with what I have accomplished in the past month. I went from being compleyely bedridden and unable to function, suicidal and losing hope, to feeling better, going grocery shopping and making meals for myself and children!! YAY!!!!

[Smile] Peace & Blessings everyone
 
Posted by treepatrol (Member # 4117) on :
 
If i was betting its the lyme and coinfections.
They cause this to happen to much Cortisol in your body. Either pituitary gland or adrenal glands are being messed with by the bugs.

Details about hormonal dysfunction associated with Lyme disease. Treatment and symptoms covered, Thyroid, HGH, estrogen, testosterone, DHEA, cortisol and more.
Increasingly, Lyme patients are being diagnosed with hormonal imbalances that are complicating their illness. Because hormones are important for regulating the immune system, treatment of these imbalances can be a necessary component to treating Lyme disease.

It is worthwhile for Lyme patients to be evaluated for thyroid, adrenal and pituitary disorders by a physician knowledgeable in these conditions. Typically, endocrinologists are the physicians who diagnose and treat hormone irregularities. However, it can be difficult to find an endocrinologist who uses bio-identical hormones and/or growth hormone, and many doctors in the holistic field are taking this approach. Patients and compounding pharmacies are good places to turn for referrals.


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General Links:
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More Info:
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http://www.lymeinfo.net/hormones.html
 
Posted by laura j (Member # 14257) on :
 
Shandy,

SO happy for you that you are feeling better!! What great news! Bet you never thought you could get so excited about grocery shopping, huh? I totally understand. If there's one positive thing about this disease is it makes us appreciate the little things much more.

Can't wait to see how you do on the Zhang Protocol! Maybe you're just one of those people that can't handle abx and they make you too toxic. Or, maybe your bacterial load is still just so high that the die-off is too much too fast and you can't rid yourself of the toxins fast enough.

I did Ceftin at the beginning of my treatment which is bactericidal and had to stop b/c I think my bacterial load was too high to handle such a strong die off. I did bacteriostatic abx until just now after a year. Now I'm on Amoxicillan which is also bactericidal and although it packed a wallop at first, I'm handling it a lot better now.

Maybe down the road you can handle abx when your bacterial load is a little lower.

The juicing sounds like a great idea! I was going to try that myself and now after hearing how much better you're doing, I think I'll give it a try!

Again, so glad to hear you're feeling better than you have in 2 yrs. I understand how very hard it is w/little ones. Stay strong (and I'll try to too. I was planning my funeral at one point too and picking out wives for my husband so my daughter would have a mommy).

I hope you continue to feel well through the holidays. What a blessing that would be!!

Laura
 
Posted by Mountainsky (Member # 51857) on :
 
Wow ok I know this is an older post but let me just say when I saw the picture of your neck I thought that was ME! I have that. Holy crap.
 


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