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Well, after asking IgenEx to do further testing on band 31, Ryan definitely is positive for lyme! Now, what do we do??? Does this mean that possibly he does not have scleroderma after all? That all his symptoms, patches on his skin, arthralgia, are caused from lyme disease?
Thankfully, his dermatologist is calling a Dr. in NY to find out what our next step should be. I also wrote to Dr. S in Iowa to see what he thinks. We are currently still on the minocycline 50 mg 2x/day every day and I do feel that he has definitely improved as far as inflammation and the patches are much more flexible and softer.
I don't know whether to feel relief or be even more scared than I have been. I went to the library and brought home 3 books and have “Cure Unknown” ordered. What other books should I read?
Does lyme disease still have the mycoplasm that we are going after with the antibiotics?
Thank you everyone! If it was not for this site, I never would have pushed this issue so hard!
Sue — Ryan's Mom
Sue,
What you need to understand is that ticks carry more than one disease. So, yes Ryan could have mycoplasma and Lyme (borrelia) and other co-infections. I believe that the infection causes the autoimmune process involved in scleroderma. Get at the root of the infection and you can stop the autoimmune process.
The good news about finding out he has Lyme disease is you will make a more directed approach to eliminating the autoimmune process by targeting the Lyme and its co-infections with their corresponding protocols. Find a good LLMD and your son will make great progress.
[user=1274]luvmywonderfulkids[/user] wrote:
What other books should I read?
Hi Sue–
Congratulations on finding the root cause of Ryan's problems!! You are one persistent Mom :)!! Now the healing can begin.
I found the book, Healing Lyme by Stephen Buhner, extremely informative and helpful.
It's amazing how many people on this board have Lyme as the root cause to their illness.
Best wishes to Ryan for a quick recovery–
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?
[user=1274]luvmywonderfulkids[/user] wrote:
I just got that book at the library — I am starting to read it right now! Thank you so much!
I got it first from the library, but ended up buying it–I refer to it often–happy reading :)–
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?
Trudi,
I noticed that you are using collodial silver — are you just using the cream or are you drinking it as well? Is this something I should be using for Ryan?
[user=1274]luvmywonderfulkids[/user] wrote:
I noticed that you are using collodial silver — are you just using the cream or are you drinking it as well? Is this something I should be using for Ryan?
Hi Sue–
This is the product I use–prescribed by my LLMD when I was too inflamed for antibiotics–
http://www.resultsrna.com/products/acs_200_faq.php
It is a spray bottle and I do 6 sprays 3x a day.
I have benefited from this product as part of my complete treatment plan; I would check with Ryan's doctor as to including it in his “arsenal”. BTW, I am also on SPIRO, made by Raintree Nutritionals, which targets the Lyme bacteria.
Take care,
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?
Thank you so much! I will check out SPIRO as well. Do you take MSM too? We started giving Ryan 5000mg of MSM and I think that has reduced his inflammation as well as zyflamend which has tumeric in it.
[user=1274]luvmywonderfulkids[/user] wrote:
Now, what do we do??? Does this mean that possibly he does not have scleroderma after all? That all his symptoms, patches on his skin, arthralgia, are caused from lyme disease?
Thankfully, his dermatologist is calling a Dr. in NY to find out what our next step should be. I also wrote to Dr. S in Iowa to see what he thinks.
Does lyme disease still have the mycoplasm that we are going after with the antibiotics?
Hi Sue,
The next logical step is to get Ryan to a Lyme Literate MD (LLMD) who will treat pediatric cases. Lyme is still so controversial that physicians fear treating adults, let alone kids, but we fortunately do have Dr. J in New Haven, CT. Although he should be retired at nearly 80, he's still plugging away and practicing on behalf of Lyme children, because he's the only LLMD pediatric specialist in the US. Now you have a positive test for Ryan, this will serve you well if you decide to visit this physician, because Dr J has been hounded relentlessly by the chronic Lyme denialists and is no longer accepting children without some type of laboratory parameters that definitively point to Lyme. It gets expensive when parents know their child has Lyme, Dr J knows their kid has Lyme, but his hands are tied when these horrible, unreliable tests come back negative, you've paid your initial consult workup and he winds up being unable to treat. So, dear Ryan is fortunate you have pursued this on his behalf and come up trumps for him. I can send you LLMD lists for any state and you can try to get him in with one of these guys, but my best suggestion would still be Dr J, because he's the best and he's treated thousands of kids. His stroy is covered in the Under Our Skin movie.
If you want to learn more in real time about the extent of the Lyme controversy, you can spend some time watching the presentations given by both sides to the IDSA on July 30th. It's both uplifting to and depressing to watch how diverse opinion is over this disease, but it should give you a primer in why it is absolutely necessary to find a LLMD and not to rely upon mainstream guidelines for treatment. We talked about this on the phone before, but it may not have fully sunk in at the time, as things are always so overwhelming in the beginning.
http://webcast.you-niversity.com/idsaArchives/
One thing may provide more clarity….Ryan's inflammatory component could well be Lyme related. As kind and diligent as his dermy has been, Sue, I'd still question whom he is consulting on Ryan's behalf about Lyme. Lyme “expert” may mean one of the IDSA docs (largely chronic Lyme denialists) or an ILADs doc. Consulting a real LLMD is the only way to go on this, I'm afraid, as all the Lymies here can attest.
Well done, Mom! 😉
Peace, Maz
PS Unfortunately, no, it doesn't mean Ryan doesn't have sclero. What my LLMD told me when I first went to him is that it's “both RA and Lyme and the Lyme triggered the RA and my unique immune response.” However, he also said that once the Lyme and coinfections are properly controlled, my RA would remit. I'm a work in progress still, almost three years in (95% there), but so far he's been right on! The Lyme journey is a long one…it's no quicker when we're this sick, but it is better in the respect that you now know what you're dealing with and can go after these bugs with all you've got. Yes, as Parisa said, with Lyme it's not just one infection, but many…and mycos are known coinfections of Lyme. Try and see the movie, “Under Our Skin, ” or order your own copy from http://www.underourskin.com
PPS Sue, I'd recommend going back to some of your first posts here on the support forum, as I believe quite a bit was shared at the very beginning Re: Lyme and morphea that may make much more sense now. You can find your own past posts and subsequent replies by clicking on your user name, then clicking “View Profile” and further clicking on “Posts.”
Thanks Maz,
I did watch part of the lyme presentation live on the 30th and some of it was so heart breaking that I could not understand how the panel could even question any of it. I will definitely watch the rest. Can you PM the contact info for the Dr. in CT? As I said before, we are from Mass so a trip there would not be difficult other than Ryan's insurance will certainly not cover it or the medical workup because he is currently on Florida's healthy kids program because that is all he can get because he can no longer get private insurance!
I wrote to Dr. S and he replied that the protocol would be the same as he is on now?
[user=1274]luvmywonderfulkids[/user] wrote:
Can you PM the contact info for the Dr. in CT? As I said before, we are from Mass so a trip there would not be difficult other than Ryan's insurance will certainly not cover it or the medical workup because he is currently on Florida's healthy kids program because that is all he can get because he can no longer get private insurance!
I wrote to Dr. S and he replied that the protocol would be the same as he is on now?
Sue, I'll send you Dr J's contact info in a PM. Be sure to mention the tests you've had done and get confirmation that he will (or is able to) treat based on these results. I'm sorry to say he does not take any insurance and it will be out of pocket. This is why you need to find out if the testing you've had done is adequate for him to treat. He may even order additional testing, which can be expensive, so if that's not necessary then it would save big bucks. Sorry, I'm punch drunk tonight, so I hope I'm making sense.
Unfortunately, Dr S isn't Lyme Literate, as great an AP doc as he is. AP is very, very different from Lyme protocols, both in combinations and doses. Another MA lady was seeing Dr S for years and just this past year discovered she had untreated babesia all along, a protozoan infection that does not respond to the usual AP antibiotics and needs antiprotozoal medications. Babesia can seriously impede progress on AP, but fortunately she is now doing much better! 🙂 I hope the same for Ryan, because (IMHO) I doubt that mino at low dose will be enough…when we get this sick, we're usually multiply coinfected and very specific combination protocols are necessary, often being changed up at intervals.
Peace, Maz
Sue,
Glad you're finally getting somewhere with Ryan's dx.
My Scleroderma was a result of Lyme. My LLMD assured me that in treating Lyme, I'd also be treating my SD and the rest of my laundry list. He was right. My doctor is in western Missouri and also treats children, in fact, he used to be a pediatrician. Down side is he's booked out for four months.
Good luck…….kim
Thank you Maz and Kim — we will be getting the results on Friday from the dermatologist and I will start making my phone calls. Kim would you mind sending me your Dr. info as well, just in case I can not get in to see the Dr. in Ct.
Maz, well I feel even better that he does not take insurance! If he did, and mine would not cover it, then I would be upset — lol
[user=1274]luvmywonderfulkids[/user] wrote:
Do you take MSM too?
No, but it's something I'm thinking about for the future. Right now I'm discovering less is better–I explain a little more below–
We started giving Ryan 5000mg of MSM and I think that has reduced his inflammation
A lot of people have success with MSM–if it's working for Ryan that is great.
…as well as zyflamend which has tumeric in it.
I started using zyflamend years ago, but stopped because for me it just increased my pain. The LLMD that I see uses Computerized Electro Dermal Screening (CEDS) to augment his treatment protocol. One of the things it checks for is compatability with supplements. I brought my bottle of Zyflamend to be checked and it totally didn't agree with me. We didn't check each individual ingredient, so don't know exactly which one was causing grief. I had a food reactivity screening this week and also brought all my supplements to be tested. I plan to do a separate thread next week (I'm going out of town and don't have time now) on how I'm learning through CEDS what foods and supplements have gotten in the way of my improvement. Here is a website that explains what I am talking about: http://barbfeick.com/ceds/
Best to Ryan–
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?
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