13 and sick for 10 months, any ideas? Feeling desparate!

[diligentmom]

My 13 year old daughter has been sick for 10 months (continuously) and we can't solve the mystery. Background info.: She was diagnosed with  salmonila poisoning at age 4 and had stomach problems ever since. She "may" have celiac disease (we took her off wheat/gluten 2 yrs. ago and made a huge improvement on growth, stomach pain, chronic sinus infections and need for abx. No one wanted to do endoscopy - so we just changed the diet. Blood tests are inconclusive. She has always gotten sicker than everyone else, with the fevers higher - lasting longer, etc. She has severe allergies - often leading to sinus infections over the years. She had two episodes of vasculitus in her feet when she was 6 yrs old after having strep. ANA back then was 1:640, Rheumatologists ruled out lupus, said it was strep that had gone to heart and was now resolved. She was an accomplished competative irish dancer but had to stop when she was having repeated foot problems (iselin's disease - growth plate not fusing with 5th metatarsal) back at age 11. CURRENT situation: she got an infection in her lip after bumping a friend's knee while playing..2 days later it was ***** and swolen. The pediatrician diagnosed strep w/o culture, it resolved with abx. Then, 3 weeks later she developed severe debilitating fatigue, fever/chills, flu like symptoms. We were told it was mono.We now know the mono test was negative, but pediatrician said it was "mono-like" virus and treated the same way. Those symptoms began to subside after about 7 weeks, she had about 3 good weeks, then it struck again in Oct. 2007. This time the cold was so bad she was just unable to get warm. It developed quickly to ice cold feet with pain, she was in wool socks, long underwear, down jackets at home, under covers. (We live in California -with mild winters). The cold feet would change colors -purple, bluish, sometimes yellow/orange too. I could always tell when her feet would start to go cold again or hurt - she would get a red rash on her cheeks. That foot pain turned into pins/needles and she was in a wheelchair by the end of November. Fever was always low-grade by this point. Joint pain w mild or no swelling, constant headaches/stomach aches too. Developed mild/occassional upper torso twitches/jerking motion. Referred to pain clinic (3 month wait) and ped. rheumatologist again. Rheum tested for JRA/Lupus - all came back neg. They said it was viral in nature and would self resolve in time - maybe a year from onset. They put her on sulindac for joint pain as she had previously developed acid reflux from a previous attempt to control joint pain with Aleve (TID). Pain clinic wanted her to see pysch. and go on neurontin. We put her into PT, slowly working on her. She began to experience sympathic and parasympathic nerve symtoms that were scary for her. Numbness, shooting pains, pins/needles, sweaty palms and feet, low grade fever, etc. I'm sure I'm leaving little things out here and there - but you get the idea. We started working with a bio-chemist that is an alternative med. doc (credentialed in western med.). He ran multiple tests. She is Vit.D deficient, low B-12, her neurotransmitters (urine sampled) are messed up, and various tests suggest possible mercury and lead levels that are too high. She also had a porphyrin test that came back very high. He put her on liposomal gluathione and various supplements, including high strenght probiotics. She definitely benefited from these - but they haven't taken care of the root problem. Chelation being considered - but she was deemed to unstable to be safe at this time. Many many blood tests have been done. We are told nothing is killing her - she is sick though. Her IgE is 2000, her ANA is 1:640. We went back to the allergist/immunologist last month and he said that he wanted her to try a corn challenge. He suspected un-treated fungal infection in sinuses could be cause of some of her problems. He ordered a CT of sinuses (CT 2 years ago showed chronic sinus inf) New CT showed less damage, but sinus infection was present. sShe was already on Ciprofloxacin for sinus infection diagnosed by pediatrician and he extended it for 1 month. Also - if symptoms stepped up pace he wanted her to try Prednisone. (This has been kicked around -but all mds wanted to avoid it) Recently things started acting up again - low grade fevers creeping up (this with sulindac 24h/d) feet getting cold again, intemittent numbness at various places on her body, racing heart with sudden slow down (ped. cardiologist ran echo - clean, sinus tachecardia confirmed - but normal).  Severe fatigue. We put her on the Prednisone w/taper down dosing. It was extremely hard on her - she was unable to attend school, leave the house, leave my side. She used Ativan to take the edge off, but cried much of the two weeks. NOW she has developed Thrush from the meds. Her head and stomache pain increased, the low grade fever never left, the heart still races occassionally throughout the day. Nystatin has helped considerably - BUT she continues to have severe headaches, stomach ache and believe it or not, yesterday the low-grade fever crept up to 100 degrees (this while on the sulindac and she had taken to Advil to try and cut the painful headache.) She has had constipation recently that required Miralix BID for 6 days. Now she continues on her previous regimen of sennecot daily.  
Current meds: protonics, cipro, sulindac, muscinex, xyrtec, nasocort, pulmicort in nasal rinse, nystatin (ingested), supplements (Vit D 2000iu, methylcobalamin 5mg, lithium, L-Tryptophan, Endotrex, Adrecor, Magnesium, Zinc, Senecot, Vit.C, liposomal glutathione, and therbiotics (probiotics). I know stress plays a part in this situation. She was attacked by a rotwheiler (sp?) dog when she was 5 -experiencing severe facial injuries that required surgery. 2 years ago both of her grandmothers became ill - one with life threatening illness - but she recovered. The other diagnosed with terminal cancer - but she is still alive, but on hospice. My husband and I are married for 17 years (only marraige for both) and our daughter is a fertility baby (with our egg/sperm). My daughter has always been a vibrant, vivacious, extremely intellegent girl. Always scoring at the top of her class, always successful in anything she does. She was pretty good in 7th grade when we had successfully changed her diet - we thought then we had solved the puzzle! She was chosen at the incoming 8th grade ASB president, and she was also given the position of drum major for the fall marching band. She persevered and did parades on pins/needles feet with fever and eventually her last parade was from a wheelchair in December. My daughter has always loved life, when feeling good she sings about her happiness throughout the house. This is not like her. She would not voluntarily give up her activities at school. She loves school and has suffered greatly from being on a reduced schedule. (Physically necessary but emotionally hard for her). FINALLY - the pediatrician has always contended that my daughter is suffering from an undiagnosable autoimmune disease that is the result of a virus. The fact that she was entering puberty is not lost on anyone and it is suspected that the increase in hormonal activity has triggered some of this stuff. The immunologist thinks it might be allergies "gone wild". The bio-chemist thinks it may be mercury/lead toxicity. Family historoy shows many significant autoimmune diseases - but most are removed from her by at least 2 generations. Any ideas?
Thanks for reading this - I know it is long and detailed.

[PlateletGal]

Bless your heart. I have Chronic Fatigue Syndrome and also have a high ANA titer (1;640). Check your inbox.... I'm going to zip you some links that will hopefully be helpful to you & your daughter.

[DLA]

Am PMing you some web links to check out.

[diligentmom]

Thanks for the feedback - keep it coming! We have tested for lyme once and it was negative.

[DLA]

I'm going to send the link to this thread to my friend with Lyme's.  Her name is Nyxie and I think maybe she can help you.  There is a very specific test for Lyme's that not hardly anyone uses.  The regular one almost always give a negative whether it be false or not.

[Nyxie63]

Hi!  

So sorry you and your daughter are going through all this.

I'm assuming they ran an ELISA test on your daughter?  That's not enough.  Even John's Hopkins admits that the ELISA has up to a 50% false negative rate.  Other studies have shown it's as high as a 70% false negative rate. That's a lot of people going undiagnosed!!!!!!  And most docs won't look any further.

I agree about the Prednisone.  Stay away from all steroids for now.  If your daughter really has Lyme, steroids can make it temporarily better but will only make it considerably worse in the long run.

When your daughter has been on antibiotics, has she had periods of getting even sicker and then going back to where she originally was health-wise?

I highly recommend getting a Western Blot done.  There are a few labs that are better than others for this.  The "gold standard" is Igenex.  MDL isn't too bad either.  The Igenex IgG and IgM western blots run a little under $200 for both tests.  It's out of pocket (they don't take insurance) and well worth it.  You will need a dr to order the blood tests and receive the results.  If you can't get your GP to do it, then stop at one of those Urgent Care or "doc in a box" walk in clinic places.

Even if the western blots come back as negative, if there are lyme-specific bands showing, she has lyme.  She can also have lyme if there's nothing showing (seronegative western blots are not uncommon).  Many, if not most, people who have had untreated lyme for a long time don't test positive until they've been on the right regimine of specific antibiotics for several months.

Lyme is also a clinical diagnosis.  The CDC states this plainly, although some doctors are stupid enough to use CDC statistical reporting requirements as their baseline for diagnosis.  Even if she has negative test results, she could have lyme and/or co-infections like babesia and bartonella.  

It sounds like she might have bartonella.  It can cause a lot of nasty things like GI problems, anxiety, and burning feet, to name only a few.

I don't know which links Dac sent you, but here are the basic ones:

http://www.cassia.org/essay.htm  - READ THIS ONE!!!!

It's very long, so take it in small bites.  This is what first really opened my eyes to the possibility of my own lyme.

Also check this brochure out, "What psychiatrists should know about lyme disease"

http://www.ilads.org/PsychiatristBrochure.pdf

And while I'm posting links, might as well post a symptoms list:

http://www.lyme.org/otherdis/ld_symptoms.html

http://www.lymeinfo.net/medical/LDSymptoms.pdf - Scroll down to the chart and go from there.

A clinical diagnosis can be done by a lyme-literate MD.  This is a doctor well-versed in lyme disease, as well as all of the resulting illnesses and autoimmune disease.  They do a complete differential diagnosis, lots of testing, and can determine what your daughter's dealing with.  Bear in mind that most aren't cheap and many don't take insurance.  If you need help finding a doctor in your area, please let me know.  I can put you in touch with resources to help you find someone in your area.

I'm not saying your daugher has lyme, but considering her symptoms and the lack of the medical community's ability to diagnose her, it's certainly a possibility.

Please keep us posted. :)

[Nyxie63]

And just for reference, here's a list of symptoms that can be caused by lyme and various co-infections:

Lyme:
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

Bartonellosis:
Common symptoms of bartonellosis include:
___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)
___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"
___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature
___Headaches, especially frontal (often confused with sinus) or on top of head
___Eye symptoms including episodes of blurred vision, red eyes, dry eyes
___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)
___Sore throats (recurring)
___Swollen glands, especially neck and under arms
___Anxiety and worry attacks; others perceive as "very anxious"
___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature
___Poor sleep (especially difficulty falling asleep); poor sleep quality
___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
___Muscle pains especially the calves; may be twitching and cramping also
___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
___Tremors and/or muscle twitching
___Heart palpitations and strange chest pains
___Episodes of breathlessness
___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
___Gastrointestinal symptoms, abdominal pain and acid reflux
___Shin bone pain and tenderness

Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.

It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified. While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.

_________________


Babesiosis

As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:

___Chills
___Fatigue and often excessive sleepiness
___High fever at onset of illness
___Night sweats that are often drenching and profuse
___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)
___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"
___Depression
___Episodes of breathlessness, "air hunger", and/or cough
___Decreased appetite and/or nausea
___Spleen and/or liver enlargement
___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)
___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
___Joint pain (more common with Lyme and Bartonella)
___Anxiety/panic (more common with Bartonella)
___Lymph gland swelling (more common with Bartonella and Lyme)

[diligentmom]

Wow!  Thanks so much for all this. I thought this path might be helpful - but really I underestimated my luck. Thanks for caring so much to share your situation with others. We went back to the immunologist yesterday and he declared the "failed prednisone test" a success. It suggests that this is viral in nature and not autoimmune. He ordered a chest xray to r/o sarchoidosis, several blood tests, including Lyme (somehow different this time but I wasn't attentive enough to get the specific variant/method), CBC, Chem 7, ELISA, and ???? others I'm blanking on right now. He also suggested my daughter may be suffering from a fungal infection and has asked us to continue the Nystatin (pill form)for 1 month after the 2 week liquid tx. As well as he was very open to the Marshall Protocol and is researching it. He also suggested that the increase in stomach pain and headaches could be migraines and gave us a drug sample to try. At least he is really taking this seriously. He told my daughter she isn't in danger of dying from whatever she has; however he finds the interuption in the quality of her life unacceptable and he will get to the bottom of it. I will spend time reading the links you've all sent me today, thanks. I will also keep you posted as to the results forthcoming. Thanks again - I feel optomistic again.

Ps - He is open to a course of treatment that would cover a dx of Lyme. Because it crosses over to cover many other chronic infection syndromes.

[DLA]

Thank you much!  Can always count on you and your wealth of knowledge.  =^)

[Nyxie63]

Dac, you're welcome. :)

diligentmom,
I'm so glad you have a doc who's not only open to lyme, but is going to fight to get your daughter better.  That's a rare find!  He sounds like a keeper. :)

Protonix, like other PPIs, are notorious for causing vitamin and mineral deficiencies.  Has she had her ferritin tested?  

Babesia is particularly known for causing anemia and it'd be good to check her iron levels (make sure they test ferritin - a lot of docs don't).  Even low levels of ferritin (below 40) without anemia are enough to cause mind-numbing fatigue, headaches, hair loss, etc.

Has she had her magnesium level tested?  This can also contribute to migraines, fatigue, and muscle twitching/pain.

Since she's now supplementing with B12, then checking her MMA and homocysteine levels would be a better way to check in future testing, rather than serum B12.  Low B12 levels (well below 1000, in spite of what the upper end of the range might be) contribute to peripheral neuropathy, balance issues, and a whole slew of neurological problems.  What I discovered about B12 is if you've been deficient for a long time and then start supplementing, neurological conditions will get worse before they get better.  It takes a couple of months for the repairs to kick in.

Maybe ask your doc about caprylic acid or coconut oil to help fight the candida.  It's a natural fungicide and works well, but gently.  Is she on a candida diet?  Nystatin can only do so much if the bugs are still being fed.

Do you get copies of all your daughter's testing?  If not, do so.  I can't emphasize this enough.  Since you are your daughter's advocate, you need to know what tests are being run, what the levels are and where they should be, what tests should be run that haven't been, and a general idea of what they mean.  I can help you muddle through most of it and can also refer you to people/websites that can help as well.  

I look forward to your updates. :)

[diligentmom]

Thanks - I am sending you a message.

[PatJMc]

Hi - Wow I feel for you and daughter.  My daughter, 17 now,  has similar symptoms which started around puberty. Gradually the fatigue affected her mornings, and it went from half hour to two hours to wake her for school.  Doctors found her ASO to be 857 (range 0 to 150) obviously from untreated strep throat.  She had it constantly; even found that after a while she'd show no symptoms for strep I'd bring her in for odd malaise and the throat swab check showed active strep!  She was on and off antibiotics and ASO went down to 600 but up to 700 after antiB finished. Doctors would say come back in 3 months and I dumbly accepted that, watching her decrease in activity. One summer tonsils (not adenoids (adenoids)) removed after one burst from excessive coughing, bio showed actinomycees (sp?) a bacteria that acts like a fungus...then just before school got varicella shot (chicken pox immunization)and started  10th grade...gradually getting worse until  finally she caught really bad cold, out of school one week, came back recovered and had gym first or second period...running track early March morning!!!  Needless to say we were called to pick her up after an hour.  She pretty missed most of the rest of school that year. At the end of month she was conscious for about 4 hours per day and was in brain fog most of time.  Fell asleep sitting up.  Sometimes we'd find her standing in a daze for long time like seizure and hard for us to get her to move.  Memory went down-hill especially short-term. Doctors had no diagnosis - tilt-table test showed blood volume malfunction; neurologist declares peripheral neuropathy, electrolytes not balanced; doctors say her body is still fighting the strep that is no longer in her throat...low BP, twitches, odd pain/sensations in odd places, very cold even when wrapped up good, occasional low grade fevers, sinus infections and sinus pain and odd sensations even when so obvious sinus infections.  We found that iodized salt and adequate water intake really helped to bring her out of fog...thyroid? Sometimes normal, sometimes on the edge...further tests showed thyroid was not problem but problem causing thyroid problem.  Now after 2 specialists and her doctor recommended it, she started on florinef, a steroid to bring up her BP which was usually 80/50...now she gradually can function better and after a year starting to have a life again..2 weeks ago ASO test 546 and that's without any antibiotics in a while!  We live in " Lyme County" NY and her tests are always " not quite " , not all bands showing, etc., so don't know in the midst of this if she really did get Lyme disease or not...we had many episodes of picking off ticks and nymphs that you need scope to see.  Never had the ring or rash.
  Curious there was mention of possible link to hormones as her  first  symptoms started when she went into puberty.  Also suffers from dry eyes and one eye doctor said a bacterial coating over the eyes that will keep her from ever having 20/20 vision.  He said she had the [dry] eyes of an old lady and offered no help.  
Did your daughter's doctors do ASO tests? Does she get enough iodized salt and sufficient water? Regular salt is not the same and, yes, the body does need salt/iodine to function. Unbalanced electrolytes can wreck havoc on tissues, muscles, organs!
  As with all parents of students with debilitating illness,  I ask...Did you request the school give your child 504 status???  If 504 disabled, the school has to, by law, address her academic needs such as having school supplied tutors at home to get her through the year and have special authorization NOW for them to go into the summer because all tutoring stops when school is out.  The tutors contact you and you set up the hours that suits when she can handle working with them...It is her right.  Use the words, " her rights, eligibility as a disabled student" ...not " what's best for her".                    Obviously I do not know the whole story,   but if she has not missed a lot of school (and is needing to repeat this year next year ) and/or was able to get homework done with you teaching her - not your job - then she is eligible to receive tutors IF you get the 504 status.
I wish you luck.  Pat

[Nyxie63]

The problem with most docs is they wouldn't know lyme disease if they were covered in ticks.

Do you have copies of your daughter's lyme tests?  If so, would you mind posting them here or PMing me with them?  I've gotten pretty good at reading western blots and can tell you if there are any lyme-specific bands there.  If there are, then I can give you some recommendations for GOOD lyme docs.

One of the problems with lyme testing is that it's kind of backwards from what you'd think.  The longer someone's had lyme, the fewer bands tend to show up on the testing.  It's entirely possible to have severe lyme and be completely seronegative.  That's why lyme is a clinical diagnosis.  

The docs who have been basing your daughter's diagnosis on the western blots alone are not only idiots but have been going against CDC recommendations.  The 5 positive bands requirement on the IgG is for statistical purposes ONLY!!!  They're not to be used as a basis for diagnosis.

Have you read any of the links I've posted?  If not, please do so.  Expecially the essay "When to suspect Lyme Disease".  

It's not uncommon for lyme patients to develop adrenal fatigue, which can affect blood pressure.  I'm assuming she's had her aldosterone tested and that's why she's on Florinef?

Have you considered using sea salt in combination of an iodine supplement such as Lugol's or Iodoral?  Iodized table salt is very hard on the body.

Hope you and your daughter have some answers soon.  I look forward to hearing from you.

[TheCove]

You state that all doctors say that her life is not in danger.

Just a thought here - but how about stopping all the meds for a bit.

They don't seem to be helping & it is not right for you (or the doctors) to use your kid as a symptomatic guinea pig - no matter your or their intentions.

My advice would be to take her to some place of nature for a day - then do it again the next day - and the next.

Let her be sick - let her alone while with you - surround her with the power of the world - the living world - of trees, seas, dessert, stone & earth.

Sometimes a solution is so obvious it has become terrible to behold.

None the less - a messenger sends his best wishes.

[ladybugmandy]

in my opinion, your daughter needs immunophenotyping and other immune system tests by an immunologist to rule out immune deficiency. also, EBV antibody subclasses IgG and IgM. if EBV antbodies are high, even if it's just IgG, your daughter may benefit from antiviral therapy. please read work by dr. a. martin lerner in MI.
good luck
sue

[aly09]

Hello I am sorry your daughter is going through this at such a tender age. I can identify with alot of her symptoms. I too have something auto-immune going on and I also have rhinitis, although mild. Alot of her symptoms to me sound like Lupus to me, with frequent fevers, rash on her face, fatigue, headaces, and sounds to me like the nervous system is also affected with pins and needles and shooting pains. It can also effect the nervous system as well.  Lupus can be very hard to diagnose with blood tests not really being to much to work off of. Her cold hands and feet might be Raynauds which can go along with certain autoimmune diseases such as RA, Lupus, Sclerderma. Also her racing heart is interesting to me because I also have issues with that. I used to have it worse when I was younger but my heart is fine. But I also noticed when I figured out certain triggers like certain medications, caffiene, & anxiety I was able to control it without noticable symptoms. Nasocort. Rhinocort, or any of those nose sprays always set my heart off so bad I could not use them at all. PPIs can also cause stomach pain. I was on Zegerid and developed the worst stomach pain from it.