Need Help

[luvmywonderfulkids]

Hi all,

I have not posted in a really long time but I have been keeping up with the posts. Ryan was seeing Dr. R in Lakeland who had prescribed tetracycline 500 mg/2x day, 3 days / week. We spoke with Ryan's pediatrician who might be willing to use AP once he totally understands it (he is reading the book now), and talks with Dr. S. I called Dr. S and he changed Ryan to minocycline 50 mg/2x day every day and he has been on that for about 2 weeks. Dr. R never examined Ryan and the last time we went back, I asked him if he thought Ryan was getting any better and he could not tell me because he never really looked at him before. It is very difficult because Ryan's bloodwork only shows elevated EOS and nothing else so we can't tell how much better he is. I do believe his skin is less tight.

We went and saw the rheumy also 2 weeks ago and he wanted to put Ryan on 20 mg of prednisone and then mtx. We did not do that and that is when I called Dr. S.

Today, we saw the dermatologist that did the biopsy on Ryan which came back as morphea. She feels that Ryan should be on prednisone as well. She wants us to do 40 mg for 7 days, then 30 mg for 7 days, then 20 mg for 7 days then 10 then 5.

I am so scared that we are doing damage to his joints by not putting him on the prednisone to reduce the swelling, but I am also scared to put him on it.

We also got the lab results on his Lyme from IgenIX, the dermatologist called the lab to see what they felt and they said it was negative, yet he had some “+” and also some indeterminate. She is going to call them again today based on Kim's input — thanks Kim! So maybe we will have further information on that.

We are also doing all kinds of supplements to reduce inflammation but I really need some of your wise input to help us make the right decision.

Sorry this is long, but I hope this all makes sense and please give me any input you can!

I can also post his Lyme test but I did not know if that was something I could do or not because it is lengthy.

Sue — Ryan's Mom

edited by RBFV to remove doctor's name.

[Kim]

Sue,

You can go to lymenet.com and read Dr. C.'s explanation of the Western Blot.  He talks about the significance of each band.

A doctor would have to talk long and hard to convince me that Prednisone would be in Ryan's best interest.  Other people will chime in with suggestions on controlling inflammation.

Take care…..kim

[luvmywonderfulkids]

Thanks Kim — I know this dermatologist is going to check on the test because she was very surprised when I told her today that this test was indicative of Lyme because she called IgenIX herself and spoke with the lab because the results were not conclusive enough for her. I gave her the print out of your email to me so hopefully she will find out more for us.

She told us that if it were her child that she would definitely put him on prednisone so I am so confused now. I don't want to do the wrong thing. do you think we are causing joint damage by not putting him on it?

Thank you so much!

[luvmywonderfulkids]

I just got off the phone with Ryan's dermatologist and she talked with IgenIX again and they reiterated that the tests were negative, however, to be absolutely sure, we are going to run a further test on band 31 epitope? Not really sure what that means? She said not to start Ryan on the prednisone until we hear back from that test which will take 1 to 2 weeks!

[luvmywonderfulkids]

Here is Ryan's IGenEx results:

antibody titers:

IFA    <1:40  Negative

IGG

31 +

39 IND
41 IND

IGM

41 +
58 +

All others negative.

Sue

[lynnie_sydney]

Sue – why not put a call through to Dr S re what he would suggest re controlling Ryan's inflammation. Lynnie  

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[luvmywonderfulkids]

I did send him an email but I have not heard back from him yet.

what do other people on the board use? I talked with the dermatologist about it again and she said that he would only be on prednisone for 4 weeks IF we do it — we are waiting for the band 31 test for lyme first. Also, she was concerned because his joints are so badly shaped and she is worried about scleradactyl. I am getting more scared by the minute!

[whaleharbor]

I don't have answers for you but I know that the fine people on this board can at least point you in the right direction as far as questions to ask and second, third, fifty-seventh opinions etc…

I am praying for guidance for you and relief for your son.

— whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[luvmywonderfulkids]

Thank you Whaleharbor — I just hope I am doing everything right for my baby!

[luvmywonderfulkids]

Kim,

When I was reading the material I noticed that it said that one must be off antibiotics BEFORE the test is performed. Ryan was on tetracycline when he test was drawn. He had taken 3-500mg pills on Sunday and his blood was drawn on Monday — did this give us false readings? Should I even bother to do the test on band 31 at this point because it is with the same blood? I hope some day I am as knowledgeable about all of this as a lot of people on this board!

Sue

[Kim]

Sue,

I had been on abx when my Lyme test was done and 8 bands popped up.  Some doctors want you on abx to stir things up and possibly have a better chance of catching something.  My doctor is Dr. C. (from lymenet) and when I asked him about how he was going to treat the SD, etc., his answer was, “we're treating the Lyme infections and everything else will improve.”  In my case, he was right……my remaining tight areas are no longer tight and my hands will never be 100%, but they are good and fully functional.  Ryan is younger and shouldn't have the degenerative stuff the rest of us have accumulated so he should have excellent results.

According to Dr. C., Band 31 can't be anything but Lyme.  I really feel you're on the right track.

Take care……kim

[luvmywonderfulkids]

Kim,

I do not understand the negative response we are getting from the director of the lab — I thought this lab was much more apt to define lyme based on Dr. C's article, yet they are telling my Dr. that it is not lyme! Do you think we will really have a better answer after the band 31 test — whatever that is?

sue

[Kim]

Welcome to the Lyme Wars, Sue……..it is political insanity!!!  The CDC has so screwed up the criteria for testing (which was never intended to be the be-all and end-all of making a diagnosis) that only the LLMDs have the guts to go to battle with the establishment.  Igenex is caught in the middle.  The reason these LLMDs are booked out for months is because what they are doing is working, otherwise their waiting rooms would be empty.  If you haven't yet read, Cure Unknown, by Pam Weintraub it explains everything about why we're in the mess we're in.  I knew a fair amount about Lyme prior to reading the book and was furious when I finished it.  It just doesn't seem possible that in this country a dangerous infection like Lyme & co. was allowed to get this out of control.

I feel for you.  I'm in Indiana without one single doctor who treats Lyme. :X

No matter how tired you may be, keep going until you get the right answers.

Take care…….kim

p.s. My LLMD's experience has been tons of false negatives on tests and almost NO false positives.

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