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Avatar universal

Can anyone guide us on where to get help for my son?

Hi, I am writing this as our doctors have said they cannot help us, the rheumatologist is not interested in our case.
2.5 years ago my son (14.5yrs old) become very ill with, 12kg weight loss, severe headaches, sore throat, chronic fatigue, joint pain - particularly knees but no obvious inflamation, aversion to light. He then developed an undiagnosed rash on his gentials. His ANA was 1:320 homo-speckled pattern. We went to a rheumatologist 2 months later (had to wait for appt). By this time he was some what better after missing over a month of school. He said he was fine and sent us home despite ongoing knee pain. He suffered chronic flu like symptoms for a year on and off with occasional joint pain but no return of rash.                                                                                                                                                                     1 year on he had a massive flare up and more bloods were done, he tested positive for Epstein Barr Virus, ANA still the same, neg for anything else, chronic joint pain now in wrists and sometimes chest too + headaches etc but no noticable inflamation, chronic fatigue, weak, weight loss of 13 kg (all the weight he had worked to put back on) in 2 months, depression etc. It took 6 months to see the rheumatologist who said he was neg for lupus and arthritic conditions, slight inflamation in knee xray but not remarkable, ring us when or if he has chronic swelling, then we will take an FNA.
Months on, we have been in and out of the doctors, taking fish oils, vitamins, colloidal silver, tried gluten free diet. Exercise, no exercise, hot packs and cold packs on knees with no help. In A&E with chronic chest pain, only to be sent home, occasional hair loss, fatigue etc. Sore throat has ceased, and headaches less often with the joint pain slowly increasing.
He is only on paracetamol + ibuprofen but he had to cease ibuprofen as he is feeling nauseous again at the moment and I can see a full relapse starting again.. With out diagnosis we are in limbo, no support, no treatment plan, no one is interested in helping him. I am
14 Responses
1193998 tn?1265121197
Hi there,

Don't give up. Any GOOD rheumatologist will know that there is such a thing called sero-negative rheumatoid arthritis, in which the patient has all the physical symptoms but the blood work shows nothing. A good rheumie will treat your son for RA based on a broad range of evidence, not just blood test results.

Keep looking for a rheumatologist who will listen. Try to find a pediatric rheumie who specializes in autoimmune disorders in children. You don't say where you live, but in the U.S. there is the American College of Rheumatology, which has an online listing of specialists, and the Arthritis Foundation. Your country could have something similar. Good luck!
1530171 tn?1448133193
Hi rach303297 and welcome to the forum.

Your son, because of the wide symptomology, seems to be suffering from a peculiar type of underlying systemic infectious condition, perhaps something like pathogenic mycoplasma.
The doctor will not be able to find any cause for his illness with ordinary blood and tissue tests, if it is linked to this.
The immune system cannot eradicate it, as it likely evades detection and possibly hiding within the tissues disguised as a normal cell by means of "borrowed' cellular membrane.
The opportunistic nature of these pathogenic infections explains the cycle
of  flare ups/relapses and temp. remission/improvement.
Common activators are lowered immunity, stress, other infections like EBV

There are a couple of tests that would indicate the presence of such pathogens.
One of them would be a Blood Volume Test and the other is a 24H Holter ECG Test. There are specific things to look for and if you're interested to pursue this pm me and I'll give you details.
Meanwhile you can try to contact: Dr Les Simpson, Red Blood Cell Research Ltd, 31 Bath Street, Dunedin,; 9001, New Zealand, tel +64; (0)3 471 8540, email rbc.research.***@****.
If he's still doing a specific blood test for pathogenic mycoplasma, that would be great, as he's probably the only one in the world!
I don't have any current information on whether he's still practicing.

You can also try to contact Dr. Garth Nicolson, a MedHelp friend and a regular contributor here in this forum. Just do a search using the forum's search engine on top of the page. He's the world's leading expert  (research, dx and treatment) in Mycoplasma, Babesia, Bartonella, Ehrlichia
Borrelia, etc.

The good news now. Should it indeed be one of these infections, there's an
specific antibiotic treatment for it with mainly bactreriostatic action and limited bactericidal action, but adequate to arrest the pathogen long enough, for the immune system to detect and destroy it.
This is a rather lengthy but effective treatment, provided that the immune system is not seriously compromised.

There are very few doctors anywhere, who are trained in this field.
In the US the only ones that deal with these conditions are LLMDs,
who are perhaps risking their careers treating these as chronic conditions,
instead of the recommended protocol(CDC and IDSA -infectious disease society of America) to treat them as acute only. A lot of controversy there.

Please post again or PM me for those tests I mentioned earlier and to ask any questions you may have.
Wishing you and your son well.
Avatar universal
Hi Carilanivey,
Thank you for your response. We are in New Zealand. I contacted the Arthritis foundation here for advise and a bit of guidance. We are unable to get any until he is diagnosed I was told although we were told about hot or cold packs on his knees to help with pain etc. We changed GPs 3 times to finally one recommended by a lady whos child has been diagnosed with juvenile arthritis. He said he was unable to help us. We have seen two different Rheumies and the second one spent less than 5 minutes with us then wrote an inaccurate report on my sons symptoms that was forwarded to us, basically saying he couldn't help us. I will persivere and keep an open mind, unfortunately those in the public health system are not going to help. Too many people are going through the health system undiagnosed without treatment, help or hope. I gain strength from your comments though, thank you so much for taking the time to answer my post.
Avatar universal
Hi Nikodireta,
I am really grateful for your reply to my post. Please do send me the details for these tests. I will try and contact Dr Les Simpson and will properly detail my sons health record. He has also developed heart palpitations and dizziness on standing over the past few months.
I am really keen to give this a try,it fits alot of whats going on with him. Thank you so much, some direction is just what was needed.
I do have a question, forgive my ignorance, what does it mean to PM?  
1530171 tn?1448133193
PM : Private Message (from the members profile box -opens up when the cursor is over the name)

Blood Volume Test
This test measures the red cell volume in ml to body weight in kg. The normal would be 30ml/1kg red cell volume per Kilogram of body weight. Any result of >15% less volume would be indicative of  a significant Pathogenic issue.

The other  test would be the 24H Holter ECG. He have done one or more,however, the clinician would be looking for T-Wave pattern abnormalities, very consistent with pathogenic Mycoplasma infections where instead of peaks, there are valleys and inversions, in which case the blood in the left ventricle is not being pumped up efficiently through the aorta, and with possible tissue scarring occurring mainly in  the left ventricle.  
So the physical evidence would be there, including often irregular heart beat, perhaps explaining the heart palpitations,
-not clinically significant in regards of "other" dx exploration- and  scarring, with EVERYTHING else showing normal!  
It is one of those situations where if the doctor is not looking for it, it will be most likely missed.
With the first test, if the doctor again is not looking for something specific, then he wouldn't even think about a blood volume test, but if a person  in an accident had lost a few pints of blood, that would constitute a medical emergency! The health implications, when the blood volume is significantly lower, can be devastating! Hmm. Linked to the dizziness? Who knows?

I hope this will help find some answers.
Keep us posted!
Avatar universal
Thanks for that, been reading alot about this, very interesting. Will update as we progress, hopefully very soon  :D
1193998 tn?1265121197
Nothing to add, just a big hug for you and your son. :)  Please do keep us updated!
Avatar universal
Avatar universal
Rheumatoid Arthritis is made by man in a patent US PAT 6582703, which when you read Figure 45 you see 18 animal viruses inserted into a woman's DNA
also you see 9 viruses inserted into Autistic Children's Brains see Lintas article

and a horse virus BORNA inserted into DNA of schizophrenic, bipolar, and severe depressed peoples

Foreign animal viruses are hard to eradicate, take courage
Mycoplasma fermentans = Gram + Brucella and RNA Virus VISNA

You can see these are inhibited in the RIDS book on my Facebook page
I'm an LPN and teaching per my licensing the peer reviewed medical research of Marvin Antelman MD US PAT 6485755 and 5676977 about one part of tetrasil
monovalent silver ozone Ag03 +3 charged to inhibit the HIV virus and wanting to conduct clinical trials.  I use the Antelman protocols from his book Reverse Immune Deficiency Syndrome (RIDS Clinical trials of AIDS ending patent USPat 5676977)|https://www.************/photo.php?fbid=252644488087841&set=a.247451251940498.65757.100000268761354&type=3&theater


to ballpark the ppm concentration for success in using Ag03 (size of particle is 1 Angstrom dissolved in 4 angstroms of water).

I know of a health supplement of monovalent silver ozone Ag03 +3 size of molecule is 1 Angstrom dissolved in 4 angstroms of water.  My testimonial people sometimes combine with other health supplements as well.

By testimonial I have received stories of some success with tiny RNA viruses such as

inhibition of RNA virus associated with multiple sclerosis in 42 yo hispanic native american female afflicted for 16+ years
inhibition of RNA virus associated with kidney ureter cancer metastasized to lymph glands x 3, uterus,  in 79 yo white female afflicted for 1+ years
inhibition of RNA virus associated with psoriasis in 72 yo white male afflicted for 6+ years
Blood sugar curbed from 400 to 180-200 in 62 yo white male with DM2
Total inhibition of approx 2.5 cm anthrax skin cancer on left forearm of Gulf War I veteran 55 yo white male afflicted for 22 years

His neighbor basal skin cancer compromise from Dioxin Vietnam War exposure

inhibition of Candida thrush associated with Lyme's Disease in 51 yo white female Ashkenazi Jew afflicted for 16+ years

inhibition of RNA virus associated with colon cancer plateaued at Stage 3 no advancement to Stage 4 in 48 yo white male Gulf War I veteran afflicted for 3+ years

Per Rife's research c 1931 inhibition of staph infection in abscesses x 6 associated with RNA virus cancer plateaued at Stage 3 no advancement to Stage 4 in 48 yo white male Gulf War I veteran afflicted for 3+ years

Would you send information about the cost of this blood test referenced by Donald Scott please?

Cynthia Alison Barrington
You may friend me on Facebook search my page as ***@****
Thank you and have a blessed day.
Good Resources in USA

Anti aging labs addresses
Neuroscience Inc. Pharmasan Labs 373 280th St, Osceola, WI 54020 (715) 294- 1705

Urinalysis Test Panel 9900
then order medicine for Phase II
Hair analysis Analytical Research Labs Inc. 2225 W Alice Ave  Phoenix, AZ 85021  (602) 995-1580  1-800-528-4067
Hair analysis test provides minerals, nutrients, toxic metals
Avatar universal
I spent much money for the mycoplasma tests and then received the results negative but said then "it can cycle; doesn't mean you don't have it"...I never would have spent $1,400.00 if they would have told me "it could cycle" before I went through all the trouble.  Also, I was ANA negative for years even though I showed every sign of Lupus--- before finally testing positive.  If I had a child with so many problems I might be tempted to try Mayo Clinic.  I know an adult who went there even though she could not afford it and somehow it worked out.  It was the first place she found a diagnosis.  I hope this child got help by now and you are doing ok. So sorry for you.  I wish all doctors listened and cared about their patients.  
Avatar universal
Still waiting for Lupus diagnosis for my daughter.... ANA was positive once and negative once.... so... there we are... Guess she needs to be tested again... So does that mean two out of three?
Avatar universal
Hi there, thanks for the comments and sorry to hear about your daughter. I have been down many paths since writing this with regards to my son. We went to a naturopath, physiotherapist for pain and symptom relief. The rheumie was uninterested in seeing my son unless he had hugely swollen joints with heat in them as he said the only thing he could do is get a FNA from the joint to test it. My sons joints never got as swollen as what he portrayed. I then talked to several people with children that have rheumatoid arthritis and and a few of them said they said dont get particularly swollen and the heat barely discernable even though the pain is great.
At any rate we went to a accupuncture therapist and they relieved much of the pain. He hasnt been back for a while and his other symptoms are under control. He stubbornly refuses to see anyone else as he felt they didnt care. It has been a hard few years, I have learnt much. When he is ready we'll pursue it more. I wish I could give you better information but I hit a brick wall.  I  would love to hear positive outcome for your daughter. If I find anything helpful I will share :D
Avatar universal
I understand your flight, Mothers will never stop looking for the answer no matter what Doctors say. I feel for you.
Has Magnesium come your way ?
I see several of your son's symptoms are related to Mg deficiency. They are usually undiagnosed.
Here are excellent book sources : Transdermal Magnesium by Dr M Sircus
and The Miracle of Magnesium by Dr. C Dean.
For start you could go on You Tube and search Magnesium Deficiency.
So many Medical Personnel to help you in your search. It helped my search. I feel so Blessed.

Joint Pain and Magnesium Deficiency
Hypomagnesemia can cause problems with the functioning of your skeletal muscles, including twitching, sore muscles, back and neck pain, and headaches. Additionally, patients who suffer from chronic joint pain conditions such as osteoporosis and rheumatoid arthritis often have abnormally low levels of magnesium. People with rheumatoid arthritis may be at a higher risk of developing osteoporosis, according to the National Institutes of Health Osteoporosis and Related Bone Diseases National Resource Center. Osteoporosis and rheumatoid arthritis are linked to a magnesium deficiency, either due to low dietary intake or malabsorption problems, says clinical nutritionist Krispin Sullivan on her website.
Clinical Evidence
Many of the available clinical studies linking magnesium deficiency with joint pain have been performed on laboratory animals. A study published in 2000 in the journal, "Archives of Toxicology," found that magnesium deficiency was associated with joint weakness and cartilage abnormalities in dogs. However, some studies on humans have also linked magnesium deficiency to certain joint pain conditions. A clinical case study, published in January 2009 in the "New England Journal of Medicine," found that a 50-year old woman with severe joint pain caused by chondrocalcinosis, a type of rheumatic condition, also suffered from chronic hypomagnesemia. A clinical review, published in the December 2004 issue of the "Journal of Nutritional Biochemistry," also demonstrated a link between magnesium deficiency with osteoporosis.

Regards, I wish you well
Edna RN
Avatar universal
Here' s Dr Carolyn's Ebook on Magnesium Deficiency http://www.nutritionalmagnesium.org/listmessenger/public/Magnesium_ebook.pdf
Her actual book will have so much more info not available on the web.
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