Strange Medical Malady! Has This Ever Happened To You?

Having recurrent bouts of mucocutaneous candiasis that brings my life to a halt on average of once a year now for 2months at a time my heartfelt sympathy to you. Mainstream medical science doesn't seem to have a clue what my major malfunction is. I have found osteopathic physicians the most helpful and the least blindered, like horses. You may want to consider some alternative tx. Chinese herbalist, Indian shaman. I'm about to go that route real soon if things don't change. I too have thought about throwing in the towel, but I will exhaust every last recourse of options.
May God Bless you and hold you. My prayers for your recovery.
John

Originally posted by janasstar
,I guess I should lay out the whole picture, and then fair assessments can be made. As smart a group as we have here, I wouldn't doubt that we might have some drs in the bunch. here are present diagnosis's and mind you that I was a healthy individual before tick bites; degenerative disc and bone disease, osteoarthritis, peripheral edema, vertigo, atherosclerotic heart disease, COPD, poly-peripheral neuropathy, and IBS.

Wowsers! That's somewhat shocking, since I'm guessing you're younger than me. The problem with a non-simple condition like that is that they could all be working together (or even one of them working with one of your meds) to cause a bewildering laundry list of symptoms. I notice an autoimmune component and an unsuspected allergy could also sneak in for the whammy.

I assume that the first thing you started looking at was your diet? No, I'm not recommending any particular type but I know there's low-allergy diets for IBS. They're not fun and it's not an interesting diet, but they can help get some of the symptoms under control.

If you're not doing this, I'd recommend starting a "food and symptoms" diary. Note what you're around (laundry detergents, soaps, personal products) and what you eat (what foods) and then how you feel over the course of a week. You may find some good evidence in that diary.

Something you said about pain and phantom limb tied in another association...

Originally posted by janasstar
As per your suggestion, I tried the breathing and meditating exercises you suggested.

I think that was an excellent suggestion -- I've had success with meditation and with self-hypnosis. You might like to try some self hypnosis MP3s here on the internet. I tried to find a free one for you, but didn't find one that I liked.


There's no pain management mp3 on this hypnotist's site, but I did like the MP3 of his that I sampled: www.audiostreet.net...


[edit on 5-9-2007 by Byrd]

Originally posted by Byrd
Something you said about pain and phantom limb tied in another association...

Originally posted by janasstar
As per your suggestion, I tried the breathing and meditating exercises you suggested.

I think that was an excellent suggestion -- I've had success with meditation and with self-hypnosis. You might like to try some self hypnosis MP3s here on the internet. I tried to find a free one for you, but didn't find one that I liked.


There's no pain management mp3 on this hypnotist's site, but I did like the MP3 of his that I sampled: www.audiostreet.net...


[edit on 5-9-2007 by Byrd]

That is so very sweet of you to take all of this into consideration. I agree that I have a lot going on with me. Much more than a person my age should have. And it all seems to have stemmed from the lyme's disease. Since the viewers here, have gotten me to studying, I have found that the afteraffects of Lyme's can be devastating. It killed my Mom's boyfriend pretty swiftly. But he was of a more advanced age.
And yes, the meditation I'm doing, does seem to be bringing my pain scale down. Decided to pay rent instead of buying a gun. :-))

[edit on 9/5/2007 by janasstar]

Hey Jana, found a couple more thing's for you to consider.

1.av.rds.yahoo.com...=A9ibyJwhGeBGuMsA3omDBqMX;_ylu=X3o'___'BwMjNqdWVsBHBndANhdHdfd2ViX3Jlc3VsdARzZWMDc3I-/SIG=11uim9a6t/EXP=1189178017/**htt p%3a//www.cayce.com/LymeDiseaseRadiac.htm

2.av.rds.yahoo.com...=A9ibyK_cHuBGAkAAEjmDBqMX;_ylu=X3o'___'BwMjNqdWVsBHBndANhdHdfd2ViX3Jlc3VsdARzZWMDc3I-/SIG=14lvli028/EXP=1189179484/**htt ps%3a//www.endfatigue.com/home.nsf/8db562925833d339852568a7004e27c8/e58dbaa1ace25a9685256d83006eec2e%3fopendocument%26autoframed

Hope some of this may help!!Keep up the good fight!!

Originally posted by DDay
I'm here Jana, got your U2U and email.
I think too that this should continue on in the thread as many people here gave good suggestions and possible causes for your condition. I do believe there was one or two on here that also suffer from constant pain.

Posting any results you do get will only benefit others. While I do not expect this to be instanteous you will begin to feel a change in your body and hopefully we will be able to reverse the effects of 4 long years for you.

I wanted to post this quote from DDay, to refresh everyone's memory, that she has been working with me on a personal level, with meditation and some other holistic suggestions. The first night I had amazing results, I saw a profile image of DDay, sending me encouragement to breathe properly. There was more that I only shared with DDay in U2U. She was also showing me arm aerobics that I could do that wouldn't hurt me. When I revealed this to her, she verified that it was true, that she was checking things with her own arm to see what would be suitable in a case like mine.
I've lost count as to how many days it has been since we started this, but there has been no more really surprising phenomena, except that my pain level has dropped from 8-10 range to about 6-7, until this morning.
I made my usual first stop in the bathroom. Whereupon leaving, I gave the mirror a glance to see how many directions my hair was going; I couldn't believe my eyes! Both shoulders are level! I have the natural curve back on my left side! My pain is around a 5 at the moment.
This might not have been the total answer, but it seems to have been part of it. All I remember from last night, was that I started the routine, and then I remembered to do some rotating aerobics of my shoulder, and felt a series of cracking, that was new to me. Then I fell asleep and awoke to these wonderful changes!

DDay's made some excellent suggestions Jana and hopefully they will work for you. Also do what your doctor recommends. You won't get hooked.

If all of us put on minds together on healing Jana...
The more Positive Healing Energies directed her way would help.
Multiple minds working together helped heal Whitley Strieber's wife Annie and Richard Hoagland. Along with excellent medical care. Both at the time were in near grave condition.
My positive and healing thoughts are headed your way Jana, with the help from the Big Guy upstairs.

Originally posted by MountainStar
DDay's made some excellent suggestions Jana and hopefully they will work for you. Also do what your doctor recommends. You won't get hooked.

If all of us put on minds together on healing Jana...
The more Positive Healing Energies directed her way would help.
Multiple minds working together helped heal Whitley Strieber's wife Annie and Richard Hoagland. Along with excellent medical care. Both at the time were in near grave condition.
My positive and healing thoughts are headed your way Jana, with the help from the Big Guy upstairs.

Not more than a few weeks ago, I wouldn't have put a lot of stock in this. Although I did have a certain amount of faith in the laying on of hands, and things like that. Those seemed to have eluded ME. Or just hadn't come into fruition in the sense realm. But the bible does also allude to strength in numbers as well. Thank you for your support. Jana

Originally posted by MountainStar
DDay's made some excellent suggestions Jana and hopefully they will work for you. Also do what your doctor recommends. You won't get hooked.

If all of us put on minds together on healing Jana...
The more Positive Healing Energies directed her way would help.
Multiple minds working together helped heal Whitley Strieber's wife Annie and Richard Hoagland. Along with excellent medical care. Both at the time were in near grave condition.
My positive and healing thoughts are headed your way Jana, with the help from the Big Guy upstairs.

That is such wonderful news Jana. I am very pleased as I am sure you are that you are getting results.

MountainStar that would be also wonderful if yourself and others could help Jana along with her progress. While I have been concentrating on sending positive energy and healing energy her way nearly nightly I do find it exhausting for me as well as I feel somewhat depleted after and fall asleep quite quickly. This takes enormous effort on my part to envision holding her in position in my minds eye and concentrating on certain areas. While this is very rewarding and has huge benefits I am new to this and am still learning while trying to help her. So any help from others with more experience is greatly appreciated and I am sure Jana will feel this way as well.

But what Jana has to report is also very encouraging to me as it shows that results and headway are being made.

Jana, continue to update us good, bad or indifferent as I still believe that there is an audience here for healing and perhaps we can help others on this board in need as well.
Collectively we are a smart bunch here on ATS and I also believe we could help those in need.

reply to post by DDay


Thank you DDay and MountainStar. I really do feel improvements daily. Your efforts are not wasted. DDay, I had no idea of the strain that this was putting on you. Please do not overdo. In the pic you sent me, I see that you have a small child, and that takes a lot of energy as well.
I made a trip to San Marcos yesterday, to see my sis. I stopped in at her hair styling shop and she treated me to an eyebrow wax and facial weave. That facial weave was the strangest thing. A lady from Iran does it with a string. If you have peach fuzz on your face, it pulls it all off, and leaves it looking like a new-born baby's butt. I bring all this up for a reason.
1. I felt well enough to make the 120 mile trip.
2. When I got up this morning (back in my own home, after the trip) I not only suffered no ill-effects that I usually suffer from long trips, but my pain scale is WAY down! At this point I would venture to say, around 3-4.
3. I just thought the ladies might want to know about the facial weave, if they didn't already. :-)

[edit on 9/9/2007 by janasstar]

reply to post by janasstar


Hi Janasstar,

A few questions: do you have any pets, are you an outdoors type person, do you garden a lot?

Just finished reading the thread and I think there is one more thing that your doctor should consider. Have you been checked for Bartonella? It goes hand in hand with Lymes in many cases. It presents a varied list of symptoms in each person, you've named several that are listed as possible symptoms. There are so many strains of it that often a person will show up negative for one strain and more tests have to be done to pinpoint the exact strain to have a positive show.

My husband and I both have chronic cases of it and we were misdiagnosed with other illnesses for several years. It was recently discovered when our vet tested one of our cats for Bartonella (she is unusual in that respect, most vets do not test for this) and the test came back positive. Our other two cats and two small dogs were then tested. The two other cats were positive. One dog was positive and they want to research him due to the extremely high levels he has. None were showing any symptoms of Bartonella which is not unusual for animals. Note: also some insect bites carry Bartonella, gardeners beware.

My husband was then tested and came back positive. His doctor felt that it would be a waste of time to even test me after so many positives so he treated me as though I have it also. We're on azithromycin for 2 months, a month to go now. Oh, and my main symptom is the neuropathy and vertigo. The vertigo seems to be letting up already, and I haven't needed a cool pack for the neuropathy for a few days now. The doctor had said the first symptoms to leave would be the neuro, nerve path pain, sure seems to be working out that way. Also all of our pets are on azithromycin for a month (shorter time for them).

Here's a basic link, it doesn't cover all of the most recent findings that our doctor informed us of, but it's close:

www.lymeinfo.net...

I actually hope that this is the cause of your illness, Bartonella is curable and many of the illnesses/symptoms reverse to a great degree.

Good luck, hope you feel better soon,

STM

Note: Another angle to consider: If you had Chronic Lymes disease it can return masquerading as many illnesses due to it's ability to hide deep in the tissues where it is difficult for the antibiotics to reach it. You should not be seeing a family practioner for this imo. You should ask for a reference to a doctor who is familiar with Lymes and associated infections. Retesting is probably called for in your case as well as tests for the other infections that Lyme's brings with it. Small rant, I know, but I just finished surfing for more info for you and the articles are very clear about seeing someone who is up on this. Many people with borderline levels seem to have the worst cases with the Lymes returning again and again (chronic). If you want to eradicate it you need a doctor that knows his/her stuff.

[edit on 9/9/2007 by seentoomuch]

Jana I'm so happy your feeling somewhat better. I will continue sending positive healing energy your way. DDay it used to be a strain on me, but it does become less after time. I'm not going to say my age, but Jana could be my daughter. I don't take any medications at all. Not that I don't have pain or any maladies. I make it go away with my mind. I know it sounds hard to believe, but for me, it works.
Sorry about my delay on getting back to you. I get lost in the ATS.
Been hanging around the Steve Fossett thread. His plane went down here in Nevada.
Jana never give-up. You can do this. If you need medications to help, that's ok. Damn tics! You'll beat 'em girl.

reply to post by MountainStar


Thanks for the encouraging word!
Jana, I don't mean to imply it's too much for me but as MountainStar can attest it does take extra energy mentally to focus really. But as I stated I am new to this and it's a joy to know that the efforts are paying off for you or at least I would like to think in part they are, you are doing the rest.

I will continue to do what I can. I meditate daily so I am able to replenish.
It is great news that you were able to travel so far to see your sister. Every day you get a little something back and it encourages you to go further.

Originally posted by benevolent tyrant
I did some checking on the internet and the only thing that I have found that might match your symptoms is something called lymphedema

Anyway, I can't help but think that this problem you are experiencing has something to do with your lymphatic system. You noted that there was bruising in your armpits and unexplained swelling. Since the armpits contain a number of lymph nodes and that swelling of the limbs, it might be possible that this is an indication of some sort of disorder involving this particular area.

Hi Benevolent Tyrant,

We're in total agreement on this. Here's something I found, please note that cat scratch disease is the common name for Bartonella which is often associated with Lyme's disease. Also bruising is shown in the armpit in one of the illustrations just as she described. Can't believe this wasn't a red flag to her doctor?

Source: www.wrongdiagnosis.com...

Localized lymphadenopathy

Reactive hyperplasia, local inflammation (e.g., dermatitis, vaccination, trauma)
Infection
–Viral: Mononucleosis, CMV, HIV, rubella, mumps

–Bacterial: Streptococcus, tuberculosis, salmonella, cat-scratch disease (due to Bartonella henselae); gonorrhea, Chlamydia, and other sexually transmitted diseases (inguinal)

–Parasitic: Malaria, toxoplasmosis

–Fungal: Histoplasmosis, coccidioidomycosis

Source: www.walgreens.com...

Common Causes

Bacterial:

Localized infection, possibly somewhere in the arm or breast draining into the glands of the armpit, or infection within the armpit itself
Cat scratch disease
Ascending lymphangitis
Lymphadenitis

I'm no doctor, not an expert, I'm just really concerned for her.

STM






[edit on 9/9/2007 by seentoomuch]

reply to post by MountainStar


Hi Mountainstar,
I am feeling your combined healing energy. I wanted to answer yesterday,
but I was a little wore out from my trip. You mentioned
that I could be young enough to be your daughter. I took Oprah's
REAL AGE test and it said I was 62! LOL! I'm not very familiar with the
method that you and DDay use, but as I said in earlier post, I do
believe in 'laying on of hands.' When my sis' ex departed, he beat
up her daughters precious pet, blue heeler. I think he broke nearly
every bone in it's body. When we found her, her eyes were vacant and glazed.
My sis and I both cried over the dog's condition and what the
child would experience, when she saw it.
So I mustered up all the faith I had and laid hands on the dog
(no money for a vet), and I prayed, "Father, in the Name of Jesus,
please heal this broken animal. You know how sensitive little Melanie's heart is,
and how much she loves You. In the mighty Name of Jesus,
the Name that every knee shall bow, I call it done."
Right away, the dog's body began uncrumpling. You could see the
bones starting to straighten! Then her eyes became clear again as life began returning to her.
When the child got home from school, she
never knew anything had ever happened to her beloved lil doggie.

[edit on 9/10/2007 by janasstar]

[edit on 9/10/2007 by janasstar]

Originally posted by seentoomuch

Originally posted by benevolent tyrant
I did some checking on the internet and the only thing that I have found that might match your symptoms is something called lymphedema

Anyway, I can't help but think that this problem you are experiencing has something to do with your lymphatic system. You noted that there was bruising in your armpits and unexplained swelling. Since the armpits contain a number of lymph nodes and that swelling of the limbs, it might be possible that this is an indication of some sort of disorder involving this particular area.

Hi Benevolent Tyrant,

We're in total agreement on this. Here's something I found, please note that cat scratch disease is the common name for Bartonella which is often associated with Lyme's disease. Also bruising is shown in the armpit in one of the illustrations just as she described. Can't believe this wasn't a red flag to her doctor?

Source: www.wrongdiagnosis.com...

Localized lymphadenopathy

Reactive hyperplasia, local inflammation (e.g., dermatitis, vaccination, trauma)
Infection
–Viral: Mononucleosis, CMV, HIV, rubella, mumps

–Bacterial: Streptococcus, tuberculosis, salmonella, cat-scratch disease (due to Bartonella henselae); gonorrhea, Chlamydia, and other sexually transmitted diseases (inguinal)

–Parasitic: Malaria, toxoplasmosis

–Fungal: Histoplasmosis, coccidioidomycosis

Source: www.walgreens.com...

Common Causes

Bacterial:

Localized infection, possibly somewhere in the arm or breast draining into the glands of the armpit, or infection within the armpit itself
Cat scratch disease
Ascending lymphangitis
Lymphadenitis

I'm no doctor, not an expert, I'm just really concerned for her.

STM






[edit on 9/9/2007 by seentoomuch]

Hi Seentoomuch,
When all of this began nearly four years ago, and the drs were taking their sweet time, scratching their heads and doing nothing. I got on the computer and began doing some searches about it myself. Lymphedema came up! I couldn't wait to get to my dr and tell him what I found out.
You know what he said? Stay out of medical books and stop playing dr,
or I'll let you treat yourself! He wouldn't even look into it or even
consider it. I don't know if I've mentioned it or not, but the swelling
did go down about a year later, when the bruising went away. The only thing that remained was my shoulder being hiked up, and my left side being pulled out, and the mind-bending pain that NEVER stops!
But over the last few days, I have had some miraculous changes. Since DDay started working with me in her style of cognitive healing, combined with me meditating on the Lord and having faith in being healed; my left shoulder has dropped back into place, and my left side has attained it's natural curve again! Then when Mountainstar joined his efforts, my pain scale began a rapid drop. He also called for other viewers to join in the power of the mind to send healing energy, I feel as though I have hope.
This is working! Everyday I feel a little better! Who knows, maybe we can reverse all the bad effects of the lyme's disease, and I will be truly healthy, and can ditch disability?

Hi Janasstar!

I'm thrilled that you are feeling better!

But I gotta know: Did your stick in the mud doctor check your for Bartonella when he checked you for Lymes?

Also, you mentioned receiving treatment for Lymes, is this still ongoing?

And, just because the bruising went away does not mean the Bartonella is gone. It wanes and then peaks. Really, it's just one pill a day for a couple of months, no side effects, what could it hurt to try? And if your doctor is not listening to you it's time to find a doctor who will. Let me know the city you're in and I'll find a doctor who is familiar with Lymes and who will listen.

I also believe in the power of faith, I've seen some amazing miracles in my time. I've also seen some amazing medical treatments that really do work. Please consider me in the group that believes that both together can be a wonderful combination.

Oh, and an update on my condition, absolutely no vertigo today, first time in a very long time. No pain today either. I consider that a miracle however it came about. Let me know through U2U the city you're in and I WILL find you a good doctor who will listen and help you.

STM

Originally posted by seentoomuch
Hi Janasstar!

I'm thrilled that you are feeling better!

But I gotta know: Did your stick in the mud doctor check your for Bartonella when he checked you for Lymes?

Also, you mentioned receiving treatment for Lymes, is this still ongoing?

And, just because the bruising went away does not mean the Bartonella is gone. It wanes and then peaks. Really, it's just one pill a day for a couple of months, no side effects, what could it hurt to try? And if your doctor is not listening to you it's time to find a doctor who will. Let me know the city you're in and I'll find a doctor who is familiar with Lymes and who will listen.

I also believe in the power of faith, I've seen some amazing miracles in my time. I've also seen some amazing medical treatments that really do work. Please consider me in the group that believes that both together can be a wonderful combination.

Oh, and an update on my condition, absolutely no vertigo today, first time in a very long time. No pain today either. I consider that a miracle however it came about. Let me know through U2U the city you're in and I WILL find you a good doctor who will listen and help you.

STM

I've been through many drs since him, and am now living in
another town. I was first diagnosed with Lyme's in 1995. I was given a script for antibiotics and sent home from ER. I probably should
elaborate that I didn't do anything about the tick bites when I first got
them. But they kept weeping streams of serus fluid, constantly. Then
a week or so later I came down with flu like symptoms that had
me very ill. The way we were raised, if you weren't broken, bleeding profusely, or 'not breathing' you just didn't go to a dr.
I thought that would be the end of it. Then my legs started falling
out from under me, with no warning. By 1998, I was diagnosed
with poly-peripheral neuropathy. Then the degenerative bone
disease, and on-and-on it went.
By the time I had gone thru many drs and illnesses, i had brought
up the Lyme's to one Dr, so he ran a test and said I didn't have Lyme's.
This really confused me. I thought to myself, "Of course I don't, they treated me for it. I told him that!" I have since been educated on
chronic Lyme's, and the usual tests do come back negative.
But to answer your direct question, Bartonella has never been
brought up. Also, I noticed that you are experiencing VERTIGO! This
is one of my newest maladies! I have had a recent MRI to determine
it's cause, but haven't gotten the reading yet. I've noticed it's not so
bad lately. At least the room isn't spinning!

[edit on 9/10/2007 by janasstar]

reply to post by seentoomuch


you know, I seem to suffer a lot of brain fog with these illnesses. I included all of your quotes in above posts, so that I could address each one of them, and I still missed some of them.
As far as drs in my area, I've gone through all of them, and now
have the best one available. He wasn't the one that made the snotty comment. He seems more willing than past drs to at least try to work
with me.
I thank you so much for your concern and your willingness to join
league with the others here on my behalf. Especially since you have ongoing problems yourself. I feel a little selfish. I would like to return prayers of healing faith in your direction, my friend. God Bless and strengthen you. Just remember that His Word will not return unto Him VOID. It will accomplish THAT whereto He sent it. In the mighty Name of Jesus.

Hi Janasstar!

What you've been through sounds familiar to me. I also was extremely healthy until out of a clear blue sky it hit me, a total 180 on my whole life.

I jumped through so many hoops, so many tests. The weakness on one side, the vertigo, the semi-seizures, my vision turning blurry at times, the tingling on one side of my face, difficulty swallowing at times, the electric funny bone pain that would only occur on my left side, my left leg giving out on me at times, my left arm not lifting, or holding a cup properly at times (noticed this mainly happened if I drank a cup of coffee), all the doctors, the neurologists, none could find the source.

Initially it was thought that it was due to my exposure to herbicides mixed in with diesel which my husband and I were spraying on baby mesquite trees on my father's wildlife preserve. The doctor could not find any physical damage to me though and said that I would probably heal with time, just take these vicodin, xanax, neurontin, and amitryptiline and get a lot of rest.

I noticed that the neurontin made my condition much worse so I stopped taking it. I felt back at square one at that point and went to see a different neurologist. This one thought that perhaps I had MS and ran a brain scan. Nothing showed up, it was normal. More drugs were doled out and he wrote off my symptoms as fibromyalgia and vertigo of unknown origin.

Then I was informed that my mother who I am pretty much a clone of was diagnosed with SLE (Lupus) as were her two sisters and her brother. I thought, "okay, that explains it all" so I avoided over exposure to the sun, took aspirin daily and actually I did start to feel better in some respects, though some of my more alarming symptoms stayed and were not shared by my mother or her siblings.

All those hoops and nada was found. There's more doctors that I left out for brevity's sake. So believe me, I absolutely do know what a pain it is to go to another doctor and once again write out the symptoms, point out the areas in the body where the pain travels. Describe once again what direction you feel you are leaning towards in a vertigo attack, drawing Xs on their paper diagrams of the body. The biggest pain was trying to get all my records forwarded to the new doctor. I would equate going to a new doctor as being right up there with having a root canal.

I gave up and just took care of myself as best as I could. Fish oil supplements, vitamin B supplements, amino supplements, etc, etc.

The irony of all this, is that I was finally diagnosed correctly by a VET! The source of the Bartonella was from our pets, several of whom we had rescued from terrible conditions. Bartonella can be contracted from several sources, the main being through exposure to our pets, another is from tick bites which is also a carrier for Lyme's.

My husband and I (he also had many unusual symptoms that mystified his doctors) marched into our new doctor's office. He is a doctor of internal medicine with a special interest in infectious diseases. We had our vet's orders to the doctor to check us for Bartonella and Lymes. If he would not consider doing so she wanted him to call her. She also recommended the dosage of antibiotics for us.

Also, Dr. Hardy in New Jersey, who runs a lab that tests for Bartonella in pets wanted to be involved and monitor our progress as he is working diligently to make vets more aware of the problem and that all pets should be tested for this disease. He is sure that many people are suffering from mystery illnesses that quite possibly could be attributed to Bartonella. He is also doing extensive testing on our dog that has a very high level of Bartonella, evidently that is quite rare.

So, though it is a pain, a total thorough pain for you to jump through one more hoop, I am totally willing after seeing so much improvement in myself after such a short time to get my back up on your behalf and find a doctor who is familiar with all the twists and turns that Lymes and Bartonella can take.

If you would consider it, U2U me the city you're in and I'll find a doctor for you who will follow this through with you.

STM

[edit on 9/10/2007 by seentoomuch]