I don’t know what to do — Ryan

[luvmywonderfulkids]

Hi Everyone,

I have not posted for a really long time, but I continue to read. I am getting really scared now because Ryan is not getting any better and he has been on AP for almost 3 years! We are also on various Lyme protocols since December of 2009 — none of which seem to be making any difference. Last June we went to Iowa where he received 5 days of clindy IV’s and he currently receives IV’s here in Florida once a month. His hands are really not any better and his wrists are locked and will not bend up. I am so very worried and I have no idea what do do. Is it time to go to the heavy drugs? I am so afraid that we have done major damage to him by not putting him on those drugs in the beginning. Some of his fingers are straighter now but they are also pointing up at the tip. His right ring finger is really bent and can not be straightened. Dr. C in Missouri has him on various antibiotics for a month at a time or until they stop working — which none of them seem to be doing anything so we just keep moving to the next one. It is very difficult to know because Ryan says he feels nothing different no matter what he is taking. I feel lost and scared — he wants to be a doctor, but how can he be a doctor if he can not use his hands? He goes to OT 2 x a week but there is not much progress at all. His grip only measures 20 where mine measures 80! I am so sorry that I keep coming back to this group for help but I am desperate and I need to know where to go from here. I really thought that he would be all better by now considering he was so young when this happened but he is definitely not making the progress that most on this site have made. I feel like I have failed him as his mom and I need help. I know that you can not give me medical advice, but neither can the doctors.

Sue — Ryan’s Mom

[Parisa]

Hi Sue,

Have your Lyme protocols included treatment for co-infections like Babesia ie. Mepron, malarone, artemisia, etc.

[Okie Tam]

I sure wish I knew what to tell you but I appear to be in the same boat as you with my daughter. Going on three years, Lyme doctor, etc and no improvement. I’ll be watching this thread for suggestions. Do know that you aren’t the only mother in this situation. I too wonder if it isn’t time for the toxic meds.

Kind regards,
Tammy

[gordbentley]

personally if I was experiencing no difference by a year and a half. I would go biologics while being proactive in finding another cause, especially if i was experiencing damage. no only can infection cause arthritis but heavy metals and food sensitivities as well. So in your case being you have tried everything for three years i would go biologics and get a food panel done both Igg and Igm and a heavy metals test. Lots of toys from china and abroad carry a nasty heavy metal load, and youngsters have been known to eat paint chips off of toys and walls. As well it is to be known that heavy metal exposure as well as pesticide exposure can induce food intolerances and sensitivities. ABX clearly started to work for me 2-3 months into treatment so I have no doubt in my mind as to what is causing my discomfort. in your case after 3 years I would say its safe to start looking else where. biologics arent the safest route but they will halt further damage until you find the cause at least.

[luvmywonderfulkids]

@Parisa wrote:

Hi Sue,

Have your Lyme protocols included treatment for co-infections like Babesia ie. Mepron, malarone, artemisia, etc.

So far, Ryan has been on Zith, ceftin, flagyl, plaquenil, biaxin, qualaquin, clindymicin, rifampin, and amoxycillan — most of these were taken for 1 month except the zith was for 6 months and the flagyl was 2 months.

[Suzanne]

@luvmywonderfulkids wrote:

So far, Ryan has been on Zith, ceftin, flagyl, plaquenil, biaxin, qualaquin, clindymicin, rifampin, and amoxycillan — most of these were taken for 1 month except the zith was for 6 months and the flagyl was 2 months.

When I see someone post that they have had no success on mtx, Enbrel, Humira, Remicade, Orencia, etc., I always wonder why they haven’t tried AP if none of those have helped.

So when I see what your son has tried without the results you would like, I have the same reaction (in the other direction). It doesn’t mean stop AP altogether. Does he see a traditional rheum? Or what are his pediatrician’s thoughts? Maybe they can give you some guidance.

Also, a month doesn’t seem long enough to judge some of those meds, especially Plaquenil.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[luvmywonderfulkids]

@Okie Tam wrote:

I sure wish I knew what to tell you but I appear to be in the same boat as you with my daughter. Going on three years, Lyme doctor, etc and no improvement. I’ll be watching this thread for suggestions. Do know that you aren’t the only mother in this situation. I too wonder if it isn’t time for the toxic meds.

Kind regards,
Tammy

Hi Tammy,

I noticed that you also have LDN as part of the protocol. Is that your daughter’s? Have you seen any improvement with that? What are her symptoms? Ryan does not have any except the deformity. He has no pain, no fatigue, nothing — his labs are also normal except for his strep was very high and now appears to be in line and he has mycoplasma pneumonie — all his ana, scl, ra factor, all normal. How old is your daughter?

[luvmywonderfulkids]

@Suzanne wrote:

@luvmywonderfulkids wrote:

So far, Ryan has been on Zith, ceftin, flagyl, plaquenil, biaxin, qualaquin, clindymicin, rifampin, and amoxycillan — most of these were taken for 1 month except the zith was for 6 months and the flagyl was 2 months.

When I see someone post that they have had no success on mtx, Enbrel, Humira, Remicade, Orencia, etc., I always wonder why they haven’t tried AP if none of those have helped.

So when I see what your son has tried without the results you would like, I have the same reaction (in the other direction). It doesn’t mean stop AP altogether. Does he see a traditional rheum? Or what are his pediatrician’s thoughts? Maybe they can give you some guidance.

Also, a month doesn’t seem long enough to judge some of those meds, especially Plaquenil.

We do have a rheumy but cancelled the last appointment because she does not do anything and he goes back to his pediatrician in March but he is not that familiar with any of this. He has worked with Dr. S in Iowa though. Dr. C in Missouri is the one that said to stay on them for 1 month and if no results to move on. Does it make sense to go back on the Plaquenil and drop the amoxy? The Plaquenil was for Lyme not for the RA which is what I believe we are battling now. His hands look just like someone with RA and not Scleroderma. He does not have tight or shiny skin, just tendons that don’t work! I really feel like we are on our own with this as far as Drs. are concerned unless we turn to traditional medication.

Sue

[Maz]

@luvmywonderfulkids wrote:

So far, Ryan has been on Zith, ceftin, flagyl, plaquenil, biaxin, qualaquin, clindymicin, rifampin, and amoxycillan — most of these were taken for 1 month except the zith was for 6 months and the flagyl was 2 months.

Sue, where is the minocycline???? 😯 For any scleroderma patient, the central treatment should always be minocycline (unless already in remission) as a staple. In amongst all the meds trialed, I don’t see one tetracycline and this really surprises me. 😮 The tetras have wonderful immune modulating props for SDers and, whatever else may be added, it is the one abx that I’d always want to be in my protocol, if I had SD and at least until remission is reached.

In SD, my understanding is that the typical contractures of the hands can be the one thing that is very difficult to reverse….just ask Richie. It’s not impossible for them to improve with time, but it is one aspect of SD that we hear around here that is like ‘Custer’s Last Stand’ when all other SD symptoms have been reversed on abx therapy. Hand contractures are in the nature of the SD beast, but most people are so pleased to have reversed the progression of their SD that some residual damage is accepted. Not so easy when it is a child, I know. 😥 If you are really worried and will always question whether you should have added an immune-suppressive med, then you could do a trial to see if it helps to release the hand contractures, but judging by reports of others who have taken this route, these drugs can be quite harmful, may slow and palliate SD progression, but don’t reverse it. It sounds like abx therapy has stopped Ryan’s SD, as his labs and other symptoms are now normalized?

Plaquenil does have anti-inflam props and is used for RA and other rheumatic diseases, but I am not sure of its efficacy for SD (unless Ryan has an inflammatory component to his morphea). If all his labs are normal, all signs of SD are now gone and just the hands that are the ongoing problem, then I would definitely get back on a Brown-type protocol in which a tetracycline is a permanent fixture (preferably minocycline) and I’d probably ask the doc to throw in a macolide, like zith, for good measure. If you decide to add an immune-suppressive med into the mix to see if this helps his hands, then it’s possible to remain on the AP and it doesn’t have to be an either/or. 😉

[Suzanne]

@Maz wrote:

@luvmywonderfulkids wrote:

Sue, where is the minocycline???? 😯 For any scleroderma patient, the central treatment should always be minocycline (unless already in remission) as a staple. In amongst all the meds trialed, I don’t see one tetracycline and this really surprises me. 😮 The tetras have wonderful immune modulating props for SDers and, whatever else may be added, it is the one abx that I’d always want to be in my protocol, if I had SD and at least until remission is reached.

Plaquenil does have anti-inflam props and is used for RA and other rheumatic diseases, but I am not sure of its efficacy for SD (unless Ryan has an inflammatory component to his morphea).)

Do you think this might be because he is being treated for Lyme by an LLMD>

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Suzanne]

@luvmywonderfulkids wrote:

We do have a rheumy but cancelled the last appointment because she does not do anything and he goes back to his pediatrician in March but he is not that familiar with any of this. He has worked with Dr. S in Iowa though. Dr. C in Missouri is the one that said to stay on them for 1 month and if no results to move on. Does it make sense to go back on the Plaquenil and drop the amoxy? The Plaquenil was for Lyme not for the RA which is what I believe we are battling now. His hands look just like someone with RA and not Scleroderma. He does not have tight or shiny skin, just tendons that don’t work! I really feel like we are on our own with this as far as Drs. are concerned unless we turn to traditional medication.

Sue

I know for our situation, we couldn’t have done this without some local support. I think I would second guess everything 100 times more if the only physicians familiar with my daughter were several states away. My daughter has been followed by a traditional rheum while on AP, often while not on any meds he rx’d.

Who is ordering the OT?

My daughter tolerates the Plaquenil and it is used for Lyme, so it covers extra bases, I think! It absolutely has not helped her arthritis, but since she started it she doesn’t get headaches or stomach pain like she used to, so it’s a keeper for us.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[luvmywonderfulkids]

@Maz wrote:

@luvmywonderfulkids wrote:

So far, Ryan has been on Zith, ceftin, flagyl, plaquenil, biaxin, qualaquin, clindymicin, rifampin, and amoxycillan — most of these were taken for 1 month except the zith was for 6 months and the flagyl was 2 months.

Sue, where is the minocycline???? 😯 For any scleroderma patient, the central treatment should always be minocycline (unless already in remission) as a staple. In amongst all the meds trialed, I don’t see one tetracycline and this really surprises me. 😮 The tetras have wonderful immune modulating props for SDers and, whatever else may be added, it is the one abx that I’d always want to be in my protocol, if I had SD and at least until remission is reached.

In SD, my understanding is that the typical contractures of the hands can be the one thing that is very difficult to reverse….just ask Richie. It’s not impossible for them to improve with time, but it is one aspect of SD that we hear around here that is like ‘Custer’s Last Stand’ when all other SD symptoms have been reversed on abx therapy. Hand contractures are in the nature of the SD beast, but most people are so pleased to have reversed the progression of their SD that some residual damage is accepted. Not so easy when it is a child, I know. 😥 If you are really worried and will always question whether you should have added an immune-suppressive med, then you could do a trial to see if it helps to release the hand contractures, but judging by reports of others who have taken this route, these drugs can be quite harmful, may slow and palliate SD progression, but don’t reverse it. It sounds like abx therapy has stopped Ryan’s SD, as his labs and other symptoms are now normalized?

Plaquenil does have anti-inflam props and is used for RA and other rheumatic diseases, but I am not sure of its efficacy for SD (unless Ryan has an inflammatory component to his morphea). If all his labs are normal, all signs of SD are now gone and just the hands that are the ongoing problem, then I would definitely get back on a Brown-type protocol in which a tetracycline is a permanent fixture (preferably minocycline) and I’d probably ask the doc to throw in a macolide, like zith, for good measure. If you decide to add an immune-suppressive med into the mix to see if this helps his hands, then it’s possible to remain on the AP and it doesn’t have to be an either/or. 😉

Maz,

I am so sorry for the confusion but Ryan takes Mino 2x/day every day — that is his staple, all the others are the ones that are changing for the lyme protocol. I did send pictures to Ritchie a long time ago and he did not think that Ryan’s hands looked like SD hands because they have that swan look to them and they are getting that boutineer (sp?) effect. The skin is also not tight at all which I think is what typically causes the SD hand to curl. If I look at RA pictures, that is what his look like. I have tried to reach out to Dr. S but I have not heard back from him — he must be travelling.

Sue

[luvmywonderfulkids]

@Suzanne wrote:

@Maz wrote:

@luvmywonderfulkids wrote:

Sue, where is the minocycline???? 😯 For any scleroderma patient, the central treatment should always be minocycline (unless already in remission) as a staple. In amongst all the meds trialed, I don’t see one tetracycline and this really surprises me. 😮 The tetras have wonderful immune modulating props for SDers and, whatever else may be added, it is the one abx that I’d always want to be in my protocol, if I had SD and at least until remission is reached.

Plaquenil does have anti-inflam props and is used for RA and other rheumatic diseases, but I am not sure of its efficacy for SD (unless Ryan has an inflammatory component to his morphea).)

Do you think this might be because he is being treated for Lyme by an LLMD>

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.

Sue

[Maz]

@Suzanne wrote:

Do you think this might be because he is being treated for Lyme by an LLMD>

Hi Suzanne,

No, not really…LLMDs use tetracyclines as a central part of many of their protocols and, having talked with my LLMD recently about the Scleroderma/Lyme combo, he mentioned that tetracyclines should be central to Lyme treatments in these patients. I can’t speak to the MO of other LLMDs, but I was quite surprised that no tetracycline seems to mentioned in Sue’s list. See that Sue just clarified that point, so very glad to hear that Ryan has remained on his mino. 😀

If I had SD, though, there is no way I’d drop a tetracycline, whatever else might be added, until credible remission was reached for a substantial period of time and, even then, would probably remain on it for life (whether in a low maintenance dose or Harvard Protocol).

Sue, hang in there…Dr. S is such an experienced AP doc, I am sure he will be able to give you some good solid advice on whether to add a conventional med or not at this stage. Did you also send him pics of Ryan’s hands in your email? I recall that Dr. S is a bit of a snow-bird and probably breaks away during the long winter months now that he is semi-retired to get away from the hard Iowa winters. 😉

[nspiker]

Hi Sue,

It sounds like Ryan has made tremendous progress. If you consider his SD is in remission, he is in no pain, has no fatigue, and his labs are all normal. If the antibiotics aren’t working, then what do you contribute his progress to? Sometimes when you have been fighting something over such a long period, it may seem like nothing has changed, because the process is so slow.

I had been on Mepron for nine months, and didn’t feel any improvement. I asked my LLMD to be switched to Malarone for babesia. Silly me, as soon as I switched, some of my symptoms returned. Symptoms that I forgot I had, because they had slowly gone away. Could that be the case with Ryan?

Here’s my some-people-think-I’m-crazy thought. One of the tools I’ve used is electodermal testing. It’s somewhat like energy testing to determine what antibiotics or supplements my body requires. I use it to corroborate what my gut is telling me. If you feel completely lost, it is a tool that can help you understand what is working, and what is not. I have taken an empty clindamycin bag, and it tested positive for me. I was hesitant to start lariam, and took a script for testing, and it showed good for my body. I wasn’t so afraid to start the treatment.

There is a mom on lymenet named tickbattler who has used bioenergic testing for her family with great results. Here is one of her early posts. http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/89559?#000000. My LLMD now consults with a alternative doctor, and provides bioenergic screening for her clients. An integrative rheumatologist that I have seen also used this same tool now for his clients. This whole lyme-thing is so complicated, testing is so inacurate, and there is so much educated guesswork, that it can only provide additional information. I don’t think I would have improved as much, without this tool.

nancy

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