My son has a multitude of symtoms and no one has been able to come up with a diagnosis yet.
A couple of years ago he was diagnosed with esophagus and ulcers and was related to a gluten allergy. We have taken gluten completely out of his diet and the doc put him on Singulair, plus allergy shots for cats, dogs, grass, mold and the such.
He has seemed to go downhill. Recently his testicles started bothering him and was developing more pain in joints. He was diagnosed with a Varicocele which he had surgery for.
He is still experiencing testicular pain, and after a recent re-examination of his esophogas and stomach was told that he has more ulcers and one of the worse cases of anyone his age that the doctor has seen.
The worst part of this that doctors seem to chuckle and say how did you get a case where a 16 year old kid with his nuts hurting?
As for his allegies we got rid of all our cats and removed all the rugs and put in hardwood floors.
None of our actions seem to help. He seems to be getting worse.
The last lead that they had was Mastocytosis.. It's just not right that a 16 year old kid has to go through this.
Any ideas suggestions would be greatly appreciated.
Posted by Clarissa (Member # 4715) on :
I sent you a private message.
Best,
Posted by sixgoofykids (Member # 11141) on :
Welcome to Lymenet.
It certainly wouldn't hurt to have him tested.
I had lots of trouble with environmental allergies, food allergies, etc. when I was younger and didn't know I had Lyme. All my allergies (except to mold, which included peanut butter and juices) are gone.
You will want to take him to an LLMD for testing and diagnosis. If you post in seeking doctors, someone will send you contact info for a doctor near you.
Posted by kpa (Member # 12079) on :
It is so hard to see one's child suffer!
My teen kiddos had some of the issues you mentioned and lyme and co-infections were at the root of these. As the lyme is receding so are these other problems.
The Newbie section here at lymenet has a ton of pertinent info. Learn as much as you can. (as I am sure you are)
I will pray for your family!
kpa
Posted by HaplyCarlessdave (Member # 413) on :
Joint pain is definitely an indicator for Lyme. As for testicular pain, that may be somewhat normal- especially after he's been on some "dates", at that age!...
But all things considered, especially if he's been where he might have gotten ticks, it might be good to see a lyme doc ("lyme-literate")- it might be wise to get some testing by a good lab. The ones I know about are Igenex and Bowen, though I've been "out of the lymeloop" for awhile, so I'm not sure if there are others now, or if those two are still around..
Unfortunately, all docs are not equivalent when it comes to tickborne disease, and valid information is especially hard to find.
Best of luck in finding some answers.
DaveS
Posted by disturbedme (Member # 12346) on :
I'd definitely get him tested for lyme and co-infections. And the best way to go about that is to find a lyme literate doctor who is willing to do all the right tests.
Not sure where they will go with the mastocytosis diagnosis. I have mastocytosis also... or at least I was found to have it on one part of my body where a mole was biopsied, on my lower back... which could mean that just that part of the body (skin) has it and can become itchy, etc. There's other symptoms, but I'm not sure pain in the groin or stiff joints would be a symptom. That sounds more lyme-like to me.
Goodluck and welcome.
Posted by Lymetoo (Member # 743) on :
PLEASE do not stop until you get a Western Blot test through Igenex lab for your son. Has he had any exposure to ticks or fleas?
Of course, he could have Lyme without having gone hiking... but if he's already had known exposure... start there!!!
Here is the Lyme symptoms list:
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
--------------------
He could also have bartonella... hence the ulcer problem.. or the lyme could have caused that.
People with that gene have a hard time with cats, molds, etc. I know...my daughter.
Get his levels of DHEA and DHEAS checked asap.
Lyme + HLA gene compounds the problem. Not impossible, but harder.
Meanwhile consider the following:
DHA, EPA and CLA...NOT ALA or LA. (Bb and molds use that component of the Omega 3 and 6s)
NO oils except for possibly olive oil.
FlaxSEED is okay...oil is not.
CoQ10...high doses, spaced.
Phosphatidyl Serine...same as above. Need to rebalance the HPA axis.
AlkaMax by TriMedica.
Test his pH (saliva). I'm betting it is low.
What is his pulse and respiration rate? Within normal limits or low? Thyroid implications.
I am fast forwarding you....a LOT.
Has he been tested for H.Pylori?
If he has stomach pain (severe heartburn)...in the ER to test ME for H.Pylori, the doctor gave me a small dose of a clear liquid and told me to drink it fast. I asked him what it was and he smiled and just told me to drink it.
It was alcohol! Yup...booze. The pain went away immediately.
His dx? H.Pylori...stomach ulcer.
Amazing, but true...I promise.
There are ways to rid that pathogen over the counter.
He can be tested (blood) for antibodies to H. Pylori...indicating an infection.
Into a search engine, type in:
H. Pylori gluten
Posted by METALLlC BLUE (Member # 6628) on :
That is most certainly a tricky case. Testicular pain has been noted in the literature in regards to Lyme Disease, and of course the joint pain and so forth. If other testing has not yielded any results so far, a Western Blot through Igenex test number 188 and 189, would be wise.
I would "consider" the possibility of tick-born illness, but I would continue to investigate with the help of a Lyme Literate Medical physician. There are many other things besides Lyme that could possibly cause those symptoms, but it sure "could" be an infection.
To call Igenex and order a test kit:
Call 800/832-3200
You can e-mail me at [email protected] and I can suggest physicians who may be able to investigate not only Lyme or other associated illnesses, but also other possibilities.
Posted by bettyg (Member # 6147) on :
welcome mom; so glad you found us!!
did one of his balls swell up? i've read of this happening and know of someone this happened to; surgery was needed for this softball size swelling!
please look or my detailed info on IGENEX lab in calif. in my newbie package, link below.
i'd have him checked for both lyme and CO-INFECTIONS; bartonnella, babsiosa, and erlichia...main 3 co-infections.
check out FRY LAB for co-infection testing; cheaper than igenex but as reliable!! ***************************************
you did a great job writing his history and breaking it up for us neuro patients here; THANK YOU!!
TREEPATROL has a wealth of 1,000 plus links in his newbie links also so check it out ok.....it's at top of MEDICAL AS ONE OF STICKY NOTES. ********************************
see my newbie package info; click on link at bottom of my package. @ http://tinyurl.com/58eyou Posted by Lymetoo (Member # 743) on :
Igenex is best for the western blot.. Test #188 and 189 as Metallic said.
Then Fry Lab for coinfection testing if your pocketbook is getting thin.
One testicle did swell up but not real large.
Posted by Clarissa (Member # 4715) on :
Could someone please send Nevering a PM with Dr. H's (in CA) info? I only know the East Coast LLMD's info.
Thanks!
Posted by northstar (Member # 7911) on :
Nevering, Based on your story, I definitely would look into lyme and/or co-infections, with a llmd. Not only does he have symptoms, but the numerous failures in other diagnoses and treatments, and supercilious attitude of doctors laughing, is enough to indicate lyme.
To find a llmd (and Clarissa has mentioned Dr. H)
(if you have not yet) post on Seeking a Doctor for Dr. H contact, and also your vague geographical area (L.A., S.F., etc.). Ca. is a big state.
Also, 1. contact CALDA (do a google...this is the Ca Lyme Disease Assoc.) for a referral,
2. click on Support Groups on the left side, and see if there is one that can help you.
I am sorry your son is having to suffer this, and I certainly would consider lyme but only by a llmd for testing and clinical opinions.
Northstar
Posted by METALLlC BLUE (Member # 6628) on :
PM me for the California list Nerving.
Posted by BOEJR (Member # 1734) on :
Sorry that your son is going throught this. Has anyone tested him for metal toxicity? Allergies can be a symptom.
Also, consider taking him for Hyperbaric Therapy. It will boost his immune system and help with the gut issues. Also, it will not mask lab results..
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