I don’t know what to do — Ryan

[nspiker]

I just noticed that Ryan’s bloodwork has always been normal. Wow, that’s unbelievable….

I guess that’s why you haven’t seen progress.

[Maz]

@luvmywonderfulkids wrote:

Yes, it was his Lyme doc that put him on the Plaquenil but only for 1 month because it did not seem to be doing anything but I am willing to give it a go again if we did not wait long enough. The trouble is that Ryan does not feel bad anyway so to judge if these are working is very, very difficult because we only have his range of motion to judge.

All of his labs have always been normal except for his EOS, strep, and mycoplasm but all autoimmune markers never showed anything.

Hi Sue,

Plaquenil takes a good 3 to 5 months to reach full effect for its anti-inflam props. 😉 One month is likely not long enough for a reasonable trial. I am currently taking it in my new Lyme protocol. If Ryan has no inflammation or swelling in his hands, then there should be no fear of damage to his joints currently. Inflam and swelling are actually what causes joint damage in RA – this may be why his rheumy isn’t too worried either. The damage you are seeing now may well be the result of contractures or damage that occured prior to or during early treatment before his morphea reversed. I don’t know and purely fellow patient speculation…but this is what I’m hoping Dr. S can clarify for you, as I’m sure this is what you must be concerned about…whether this is permanent damage, if he is dealing with some sero-neg form of arthritis or if these are contractures that may in time reverse?

[luvmywonderfulkids]

@nspiker wrote:

I just noticed that Ryan’s bloodwork has always been normal. Wow, that’s unbelievable….

I guess that’s why you haven’t seen progress.

Yes and so frustrating — what is causing this problem with his hands — I really do believe he has RA and he is just so young that the markers are not showing up??? What is this? electodermal testing and how do I do it?

[Maz]

@luvmywonderfulkids wrote:

Yes and so frustrating — what is causing this problem with his hands — I really do believe he has RA and he is just so young that the markers are not showing up???

Yes, very frustrating. But, if it makes you feel any better, even if he does have a sero-neg form of RA/Lyme, the abx therapy would be same or similar. 😉 Further, as he has no markers for inflammation (SED, CRP, elevated WBCs), its’ questionable that even if it was sero-neg RA that he’d be getting damage like this. There are peculiar instances where some people do get sero-neg RA with an eerie lack of inflammation…this is also typical of Lyme, btw…but usually joint damage isn’t an issue, as there is no inflam or swelling, just pain.

It is the inflam and swelling of RA (sero-neg or sero-pos) that is what causes actual damage. This is why I’m wondering if the damage was already done early on in his disease process…but perhaps something Dr. S can clarify for you.

[nspiker]

Sue, read the link posted above. It will give you an understanding of bioenergic testing, also called electrodermal screening. Basically, there are EDS practitioners, who usually are associated with alternative or integrative doctors or chiropractors. The clinician will have you hold a metal cylinder that is attached to a metal box. Supposedly, along with the computer, this machine reads your strengths and weaknesses. It can determine the underlying causes that are making your body out of balance and sick.

Here is an excerpt from that link from lymenet:

I recently took my entire family to a woman who uses a machine which uses bioenergetic or electrodermal screening to diagnose various diseases. She is an RN who worked for 20 years at a hospital until she had to stop due to “arthritis” which turned out to be Lyme. She was told it was incurable. She healed herself with herbs and became interested in this diagnostic technique.

I had met this woman once before several months ago when I went along with my neighbor on her first visit to observe and take notes. She mostly follows the Cowden protocol but also recommends parasite treatments and some homeopathic meds for viruses.

Since I have been recently researching rife more extensively, I have started to believe that this machine might actually be valid, since it uses frequencies to detect bacteria, viruses and other things in the body. I am not sure how similar it is to rife (maybe someone can clarify), but now that I believe that frequencies can be detected through rife, I am more open to believing they can through other machines.

I took my family to her just before Christmas this year and this is what I observed and learned:

1. Apparently Dr. Cowden uses one of these machines as well. The inventor of this machine was Dr. Reinhold Voll from Germany. See:
http://www.answers.com/topic/reinhold-voll
http://www.energetic-medicine.net/reinhold-voll.html

2. This machine found evidence of babesia, bartonella and Lyme in all of my children, which is what I expected and is consistent with test results. It also found mycoplasma and erlichia, which had not shown up in testing.

3. This machine can apparently determine if certain herbs or abx are helping the infections in the body. You can place the herb or abx on the metal tray while you are holding a metal cylindar attached to the machine and it will show it getting rid of the infection on the screen if that is the correct treatment.

For example, I put bactrim on the tray while my son was being tested and it came up as helping his bartonella infection. I did this with my daughter as well. I know the bactrim is helping both of their symptoms since when I try to take them off it, their bart symtpoms come back within days.

I have recently started my boys on Enula and it did not show up helping their babs but did show it was helping their Erlichia! Has anyone heard of using Enula for Erlichia? Their ears turn red after I give it to them, so I suspect it is doing something. I have not been able to tie it to any symptoms except I think it is helping reduce night sweats in one of my boys.

When I put cryptolepsis on the tray, it showed up helping my boys’ babesia.

My husband’s test didn’t show any babesia, which was a surprise but his only likely babs symptom is occasional night sweats and insomnia, which could be attributed to other infections. And he has been treating babs on and off two years. When we put cryptolepsis on the tray for him, it didn’t show up as helping him.

It was interesting that their current protocols mostly did not show up as helping them, which is what I expected since they have been on these drugs for months and they seem to have plateaued.

When we put new things they had not taken such as Flagyl on the tray, it showed it worked on lyme for one child and bart for the other. It also showed up as helping my husband. Samento and Cumanda also showed up as effective for their infections.

All of us tested positive for Candida and for parasites (worms). When I put the children’s humaworm on the tray for my boys, it showed it would get rid of the worms. I have had this product and have not yet treated them with it.

All tested positive for EBV and CMV, which was expected. She suspected my husband’s unlrelenting headache could be from EBV…has anyone heard of this being a cause of a constant headache?

4. My husband recently gave me the book “Natural Cures They Don’t Want you To Know About” by Kevin Trudeau. I don’t think this book mentions Lyme or rife but I started reading it last night and guess what…he mentions this type of machine on page 2 of his book!!! This machine and the practioner who used it on him actually saved his life and introduced him to natural/alternative medicine in his early 20’s. (He had a heart condition which mainstream docs said was incurable.) I couldn’t believe my eyes when he referred to Dr. Voll.

5. These machines are apparently used extensively in Germany and in other countries but are not approved medical devices in this country.

Anyway, I wanted to share this in case any of you would be interested in it and also to see what your thoughts might be about this type of diagnostic tool.

Thanks,
tickbattler

[luvmywonderfulkids]

@Maz wrote:

@luvmywonderfulkids wrote:

Yes and so frustrating — what is causing this problem with his hands — I really do believe he has RA and he is just so young that the markers are not showing up???

Yes, very frustrating. But, if it makes you feel any better, even if he does have a sero-neg form of RA/Lyme, the abx therapy would be same or similar. 😉 Further, as he has no markers for inflammation (SED, CRP, elevated WBCs), its’ questionable that even if it was sero-neg RA that he’d be getting damage like this. There are peculiar instances where some people do get sero-neg RA with an eerie lack of inflammation…this is also typical of Lyme, btw…but usually joint damage isn’t an issue, as there is no inflam or swelling, just pain.

It is the inflam and swelling of RA (sero-neg or sero-pos) that is what causes actual damage. This is why I’m wondering if the damage was already done early on in his disease process…but perhaps something Dr. S can clarify for you.

We had many different xrays, bone scans and other tests and there was no damage — it is probably time to do it again to see what has changed. Could Lyme disease cause his joints to swell and lock his wrists?

[Maz]

@luvmywonderfulkids wrote:

We had many different xrays, bone scans and other tests and there was no damage — it is probably time to do it again to see what has changed. Could Lyme disease cause his joints to swell and lock his wrists?

Very interesting that there is no actual joint damage. So I am wondering if it is more of a tendon and soft-tissue problem, like a contracture that would be seen in SD? Follow-up imaging should provide more current info on all this.

Yes, Lyme disease can cause edema and locking of joints. In my case, bursitis was a real problem in the beginning, causing frozen shoulders….but bursitis is also extremely painful. It doesn’t sound like Ryan is in any pain?

[luvmywonderfulkids]

@Maz wrote:

@luvmywonderfulkids wrote:

We had many different xrays, bone scans and other tests and there was no damage — it is probably time to do it again to see what has changed. Could Lyme disease cause his joints to swell and lock his wrists?

Very interesting that there is no actual joint damage. So I am wondering if it is more of a tendon and soft-tissue problem, like a contracture that would be seen in SD? Follow-up imaging should provide more current info on all this.

Yes, Lyme disease can cause edema and locking of joints. In my case, bursitis was a real problem in the beginning, causing frozen shoulders….but bursitis is also extremely painful. It doesn’t sound like Ryan is in any pain?

Part of it is definitely his tendons but also the joints in the middle of the fingers are huge. He has absolutely no pain unless we try and bend them then there is pain. I think he has learned to compensate and just does not use them the same way as other people use their hands. He has been wearing oval 8 splints at night for over a year and that has helped straighten some of them out but not all of them. He can not make a fist or flatten his hand or bend his wrist.

[1Aggie]

I haven’t posted in forever because I have been doing so well and I really think it has to do with adding Low dose naltrexone to my mix. What a difference. I don’t know if this is a drug recommended for kids but I would print out the info and take to my MD to see. Just a thought and I will pray for your son right now.

Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.

[luvmywonderfulkids]

@1Aggie wrote:

I haven’t posted in forever because I have been doing so well and I really think it has to do with adding Low dose naltrexone to my mix. What a difference. I don’t know if this is a drug recommended for kids but I would print out the info and take to my MD to see. Just a thought and I will pray for your son right now.

Thank you so much. Ryan’s pediatrician does not really understand the protocol and I am not sure that Dr. S in Iowa is all that up on LDN because when we were there in June, he did not know much about it but I am going to ask him.

Sue

[1Aggie]

Sue, all I did after seeing low dose Naltrexone on this forum was to google it and it took me to a site that answered all my questions. I was fortunate to then bring that info to my primary MD who is very progressive and he said he had no problem putting me on this medicine because at such a low dose he felt it was very safe (he had prescribed it for persons struggling with addiction at a much higher dose). I was so thrilled and then found out it is very affordable. When I went back to see him recently, he thanked ME for giving him the information because he now has several patients on it and they are doing well too. Anyway, I wish you all the best. It must be agonizing to have your child ill. God bless, Alice

Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.

[luvmywonderfulkids]

@1Aggie wrote:

Sue, all I did after seeing low dose Naltrexone on this forum was to google it and it took me to a site that answered all my questions. I was fortunate to then bring that info to my primary MD who is very progressive and he said he had no problem putting me on this medicine because at such a low dose he felt it was very safe (he had prescribed it for persons struggling with addiction at a much higher dose). I was so thrilled and then found out it is very affordable. When I went back to see him recently, he thanked ME for giving him the information because he now has several patients on it and they are doing well too. Anyway, I wish you all the best. It must be agonizing to have your child ill. God bless, Alice

Alice,

I did write to Dr. S to ask him if we could put Ryan on it, but I have not heard back from him yet. I really would like the order to come from him to Ryan’s pediatrician because then I know he would do it. I just don’t know if the dose would be different for a child or not.

[lynnie_sydney]

Sue – if you go to the website http://www.lowdosenaltrexone.org, you will find alot of information on LDN. Also, the site gives a list of compounding pharmacies from where you can order the right amount compounded. One of these is Skip’s Pharmacy. You can send a question to the pharmacist and he will answer. I did and a response came through in 24 hours. You might want to check about LDN’s usage in children and, if yes, the kind of dosages recommended for children of Ryan’s age/weight etc. 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)

[Author]

Posts