Toddler with JRA- New Year's Update

[evalon]

Happy New year to everyone!!!  Again, I can't THANK YOU all enough for your kind words and suggestions….I feel badly that I don't respond to everyone personally when you take the time to reply to me….and my woes..but know..I think of you all and bless you and wish you the best in the new year.  Shelby turns 2 on Saturday!  We made the deal with the devil on Thanksgiving..put her on 3 ml a day of prednisolone….did that for a week..then cut to 2 ml a day..now I have her on 1 ml a day….yes, you know, how it helped……the ped rheum still insists I put her on enbrel….I can't go there yet..the holistic doc has her on supplements for yeast and minerals..and omega 3/6/9…..she is gluten/dairy free (confirmed with wheat allergy!) and just starting something new…GEMMOTHERAPY!!!!!  here;s the info

http://homeoinfo.com/08_non-classical_topics/is_it_homeopathy/gemmotherapy.php   

http://www.alifeexperience.net/articles/gemmotherapy_a_powerful_tool_by_towle.htm

We've started ribes nigrum and virginia creeper….am praying that this will do what the steroids do…naturally….Anyone try this before??????  ALSO..here are results from IGENEX  Please..any insight here?????

  IGG- 39- IND and 41 +++ (41 was positive on Quest too) IGM- 41 -IND and 66 ++ 

Please, any opinions???  I'm getting myself physically sick over all this..my stomach is in knots trying to get her well..and walking again…THANKS TO ALL OF YOU FOR BEING HERE FOR EACH OTHER. evy

 

[Trudi]

[user=1730]evalon[/user] wrote:

  IGG- 39- IND and 41 +++ (41 was positive on Quest too) IGM- 41 -IND and 66 ++ 

I would see a LLMD ASAP. 

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[judy cash]

Evy,

I have thought of you and Shelby so many times. Did you get a” for sure ” JRA diagnosis? You are in my thoughts and prayers. Happy Birthday to Shelby.

Judy

[evalon]

Hi Judy!!  YES..sadly..we got the for sure……she is such a little trooper though…remember the 'misdiagnose” that put her in a cast over the summer..still trying to get back in standing position again..her muscles were so atrophied..right knee joint in contracture…..Will remove all steroids within a week…hoping the holistic stuff is working..and YES..have appt with Dr J!!!!!!  (LLMD ped)…confirmed for April..but will get on list for sooner..didn't know how to interpret Igenex results!  (When we told the ped rheum that she is positive for band 41 on all tests..he said, “yeah, that means she brushes her teeth.”   ??????? Hope you are well too, thanks for your note, ev

Edited to remove the doctor's full name per forum guidelines. RBFV

[Maz]

[user=1730]evalon[/user] wrote:

..didn't know how to interpret Igenex results!  (When we told the ped rheum that she is positive for band 41 on all tests..he said, “yeah, that means she brushes her teeth.”   ??????

 

Hi Judy,

Thanks for checking in with us and the update. I think a lot of us here are holding you and Shelby in our thoughts.

Band 41 is the band that picks up the proteins that are associated with the flagellum (tail) of the spirochete. It is the flagella by which these corkscrew organsims manage to get around, wiggling it to and fro. There are a number of known spirochetal organisms, including oral spirochetes that cause periodontal disease, heliobacter pylori that causes stomach ulcers and stomach cancer, syphilis and, of course, borreliosis (Lyme), etc. So the ped rheum was likely saying “Yeah, she brushes her teeth,” when you expressed your concern, because this band can cross-react with other spirochetes…my question back to him would have been, “Well, have you tested her for H Pylori, which has also been linked with RA in studies????”

Spirochetes are known to trigger RA and this has even been admitted by the Pres of the American Periodontal Assoc. Lyme was discovered because of a cluster of kids coming down with JRA in Lyme, CT, and if you google Heliobacter Pylori and RA, you'll find a number of studies, including one longterm study on an antibiotic biaxin (clarithromycin), which brought those RA patients with H Pylori into remission! So, it's a bit ironic that this ped rheum made such a facetious comment, because if he really knew his stuff, he'd know that spirochetes drill into any tissue (yup, with their flagella wagging happily behind them) and that oral, stomach, STD and tickborne spirochetes can all cause havoc to someone with the genetic proclivity. Secondly, I very much doubt your baby has periodontal disease…she probably hasn't even got more than a few molars at this point that have pushed through!  I also doubt she has syphillis! Did he think to test her for H Pylori with her gut issues, I wonder? Okay, I don't want to be facetious now, too, but really just trying to explain that these infections should not be “brushed off” (to coin a phrase ;)). Older people with periodontal disease have actually had relief of their RA symptoms by extracting their teeth!

All that said, my best fellow patient suggestion would be to put in a call to Dr Harris who is the owner of IgeneX labs and ask him for further elucidation of Shelby's results. According to Dr C (Kim's LLMD), Band 39 is the most specific protein for borreliosis of all and he also says that indeterminate (IND) readings should not be brushed off. If someone is producing even a tiny amount of antibody to a Lyme band antigen, then this is significant and warrants further investigation. Dr Harris may be able to assist you with further testing on this band to confirm Shelby's test one way or another. IGeneX stores the blood sample for a period of time, so it's just a matter of printing off the blood order form and checking the test Dr Harris suggests, getting a friendly doc to sign off on it and sending the order to IGeneX. 

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

“39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.”

It's worth reading the full link above, because Dr C explains all the bands and what they mean….also how IgM and IgG may vary as Lyme is a relapsing/remitting infectious disease.

Here is another link that may help:

http://www.lymenet.de/labtests/brenner.htm

Interestingly, Shelby's results are a similar pattern to mine, Judy. These were my early IGeneX results, performed just 3 months after I saw my rash:

IgM

**23-25 Kda  IND

IgG

**31 Kda IND

**39 Kda +

**41Kda +

So, all of the bands I showed sensitivity on were double-starred bands. For me, as I just squeaked in with enough antibody on two double-starred bands (39 and 41), I didn't need to do further testing on the IND bands.

I think you'll feel a lot more enlightened when you get a chance to speak with Dr Harris. If Shelby just had sensitivity on Band 41, then it could be questionable she has Lyme (because of cross-reactivity with other spirochetes), but as she's showing some antibody on two other bands (39 and 66 regardless of IgM/IgG), these warrant being taken seriously and investigated further.

Hope something here helps! Please let us know how you get on.

Peace, Maz

PS I would also put in a call to Dr J's office to let them know Shelby's results after you speak with Dr Harris at IGeneX to be sure these tests provide ample evidence for his treatment of her.

 

 

[Kim]

Thanks for posting, Evalon, but so sorry to hear your little one is suffering so.

Her Lyme test shows some VERY Lyme-specific bands.  This is from Dr. C. in Missouri's explanation of the Western Blot.

In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0

Please, please get your daughter evaluated a.s.a.p. by a LLMD.  Dr. C. is my doctor and I know he sees children so you may try for an earlier appointment, or if you'd like the list of other doctors in your area just let us know.

Take care……kim

p.s.  What an obnoxious remark from your ped-rheum…shameful!

[evalon]

THANKS to all of you for your thoughtful replies..YES.. I will pursue  Igenex and find out more….will send results to DR J and see what he says too…and YES..ped rheum is very smug…he wouldn'ty even consider abx!!!!!  argh….prayets for all of us for a betetr 2010. ev

[Parisa]

Evalon,

These rheumatologists just make me want to scream.  I can't believe how eager they are to use toxic treatments but won't even try to find out the cause of a condition.  In the future, people will look back at this time and be amazed at this culture of ignorance.

[Kim]

Evalon,

Funny, Maz and I must have been typing our responses to you at the same time, it happens.  I'm sure her blood pressure rose at the same time mine did with your recount of the ped-rheum visit. :angry:

Rheumy's are NOT held in the highest regard around here, deservedly so!

Take care……kim

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