Too much? Too little? I’m worse?

[gordbentley]

Just be sure that is what you wish. You shouldnt just do something because I was successful with it. we are all different. if you are going to switch just make sure that is what you decide. I think you should definitley look into diet though if you haven’t already. I find potatoes make my ankles hurt and shellfish goes right to my spine.

[DiamondTNT]

I research, like here, and make my decisions. For all of us it appears it’s success by guesses and trials and errors and it’s all so individualized. I will keep trying until I get this into remission!

The diet thing scares me the most! My naturopath Doc had me tested for food sensitivities and very little came back with mild sensitivities. Naturopaths are taught that it’s all about diet and originally thought that about my RA – until he read Scammels book and then said, “That just makes too much sense!”. The only items that triggered a mild reaction were: bananas, mushrooms, asparagus, (can’t remember the other 2 right now), and I didn’t have those items very often anyway. I am paying attention to what I eat and when I flare and have not been able to figure out any correlations. I have spent my whole life naturally avoiding breads, not fond of starchy foods, using honey or molasses instead of white sugar, etc. Love my meat and veggies and fruits and do most of my cooking using as natural items as I can get. Would love to live on a farm and raise my own but, that’s not realistically going to happen so I do what I can to stay natural without going overboard.

[Maz]

DiamondTNT wrote:

I still have some 100 mg Doxy I tried last year and herxed so badly I went back to mino. I’ll try finishing that and see what happens. I doubt it’s MIL.

quote]

Hi Diamond,

You’ve had some great suggestions so far….just thought to add to be careful not to use any tetra that is past a year old. Tetracyclines that have passed their expiry date (1 year from on bottle, but might be even better to check with pharmacy to see how long it was on their shelf) actually become toxic and can cause kidney damage.

If this helps, drug-induced lupus erythematosis (DILE) caused by minocycline isn’t dose dependent. It is more to do with how a person’s body metabolises certain drugs. I was on Minocin for 16 months total and started experiencing DILE at about the one-year mark after I’d reached remission. 😥 I was on 100mg BID MWF. There are specific labs to test for DILE, which you can find in my progress thread link below my sig.

Doxy wasn’t as effective for me in the same dose as mino, unfortunately, even with zith pulses. I think if I had increased to daily dosing of doxy (as with the teta I am on now) I would have been fine, but everyone is unique in response. 😉

[hmom]

Hello Diamond,

I don’t want to jump on the Lyme bandwagon, but I guess I will anyway! As one who has had autoimmune symptoms brought on by Lyme, I just wanted to give you a few thoughts:

– I don’t know about the Florida lab, but Igenex testing is considered the most sensitive and accurate of any out there. Might be worth the $200 to retest with them.
– Note that a “negative” report, even with Igenex, does not necessarily mean you do not have Lyme! Most LLMDs will consider a Western Blot positive if even one Lyme-specific “band” comes back positive or indeterminate. This is because Lyme specifically suppresses the body’s antigen response, and why even a flat-out negative Western Blot, even from Igenex, may not exclude it. That’s why…
– If you even suspect Lyme at all, I have learned you MUST get a CD-57 test. It measures the level of specific immune cells that are known to be suppressed only by Lyme. Labcorp offers it (I think it’s called the Stricker Panel), not sure if others do. It’s one of the best methods around for diagnosing and tracking treatment progress. I think absolutely everyone should get one!! (As reference, mine was 7 out of a normal range of 60-300!)
– Definitely agree that coinfections can “emerge” and undermine initally successful treatment. Happened with me at the 8 month mark. Mino/Clindamycin is great for Lyme but would not address some others that may be lurking in there.
– Finally, to me at least it sounds like you have a fairly aggressive IV schedule. It doesn’t sound out of the question that your body might be herxing, and unable to keep up with it, leading to an increasing toxin load. This also happened to me. Do you detox?

For all of the above, maybe at least you could have additional testing done prior to August? Is seeing an LLMD out of the question?

Hope some of this might be helpful –

[DiamondTNT]

Well, I just lost a nice long post and don’t have the mental capacity to do it over again.

So, thank you all!!! I will do more to detox – toss my old doxy – and chat with Dr about drugs and Lyme testing again.

[DiamondTNT]

Update:

What a roller-coaster ride this has been! I can’t seem to hit any vein lately to get any Clindy IVs done; I will keep on trying.

Dr put me on 250 mg Flagyl, twice a day, 3 days in row per week a month ago – trying to bust the cyst stage of the bugs. He also added another anti-fungal: Nystatin. Costco filled the Flagyl script with a generic pill with no coating (very nasty taste no matter how fast I get it down). I still can’t figure out if I’m herxing or flaring but have noticed that I will feel pretty good the day after taking the Flagyl. I take 100 mg Mino twice a day on one or two of the off days each week. I still feel like I’m going downhill with the symptoms getting worse although, not as fast as before the Flagyl.

I will see Doc again in mid August, get blood tests, including for Lyme again, and possibly add some DMSO. I’ve just added a larger dose of GNC’s MSM and hope it will help.

I almost always need a cane now, if only for stability as my feet and knees are too unstable and I’m afraid of falling. I walk very slowly, deliberately, and not very far. I’m back to using those electric shopping carts again and really hate feeling like I need to. The good part is that people in general are MUCH nicer about someone in an electric chair than they are when I’m leaning on the shopping cart and they don’t see my cane.

I’ve had a ‘sore’ spot at a vertebrae around the middle of my back for many, many years. It’s now ‘burning’ and follows the rib around the left side to my breast plate. When it really flares up I get a lot of muscle twitching along that rib below the shoulder blade. When it gets really bad the burning sensation goes all the way around my left side. Another new symptom is deep into my left hip, right where I sit on it. It’s now had that burning and very painful sensation four times in the past 10 days. When it hits it’s fast and hard and lasts as long as it takes for a larger dose of Hydromorphone to take effect. The little finger on my left hand doesn’t move much anymore and the joints ‘click’ when I make it move. The right knee is much worse and makes going down steps or a slope very difficult. Sometimes the backs of my heels start ‘burning’ so much I cannot allow them to touch anything which gets quite difficult since laying down on my back is the only way I can lay down now. I must either bring my knees fully up so my feet are flat on the mattress or angle enough to have my feet dangling off the bed. I admit I’m taking more Hydromorphone now than before and I’ve found that adding a single Benadryl will often allow me a full nights sleep (double Benadryl is pretty much a guarantee of full nights sleep). Without both I get very little sleep due to the pain. I’m so tired of the constant pain, especially when it gets really bad. Think I’ll try targeting my anger at any bugs inside of me… Set up a little mental boxing ring where I always win. 😉

Anyway, I still can’t figure out what’s working and what’s not so I’ll keep on trying everything my Doc thinks I should. Looking forward to seeing him in person again.

Happy Fourth of July wishes for all our Americans!

[Valsmum]

Sounds like you’re going through a rough time. Your first post you mentioned Orencia, I tried it for a few months and it made my knee sweeling go down, but my arthritis in my lower back never got better. So the whole time I was on Orencia I may have had a little less pain but my heart started to beat fast out of nowhere and I read that other people experienced the same thing, so I just decided to stop taking it.
Then I retook a lyme test because the last one was indeterminate and to my suprise it came back positive , even cdc positive for a current infection. I am on zithromax this month and I feel better than I did while I was on Orencia, I am happy because I feel like I am finally going in the right direction.

I know you do the Clindy IV’s yourself,but maybe if you have a friend that is an RN they can help you find a vein better. Do you have food sensitivities? I do, and sometimes when I’m in a flare I eat just apples for a couple days and believe it or not I feel like it gets me feeling better, it brings my pain down a few points on the pain scale. On those bad days I also avoid starchy foods and that helps my inflammation, everyone is so different it may not help you at all, but I just wanted to tell you in case in might decrease your inflammation.Hope you feel better soon.

Take care,
Sheri

[Parisa]

I believe some people coat Flagyl in oil to help it slide down and reduce the nasty taste. Maybe coconut oil would taste best? I’m sorry with these treatments sometimes you feel worse before you feel better. I really wish we had crystal balls then we would know that at the end of the suffering there are better times ahead. Here’s to hoping you round the corner soon and start to see some improvements that will encourage you keep on.

[DiamondTNT]

Third time trying to reply… each one is getting shorter… 😈
I’ll copy what I wrote before I hit submit this time.

Thank you so very much for your replies!

I was tested for food sensitivities, had 5 items that showed minor sensitivity and have deleted those from my diet.

I will coat the pills with something to get them down without that nasty taste left over.

Thinking that MIL might be a consideration and will stay off the mino for a while and then test it to see what happens. Sure am looking forward to seeing my Doc again, get more tests and get back on the road to recovery. These are such nasty diseases!

[DiamondTNT]

Hmmmm… I wrote and posted a long update in a new topic around August 18th and I guess it didn’t really post after I thought it did. So, I’ll just update here.

My RF is down to 32!!!!!! AP is the ONLY reason it’s gone down so low and I can’t thank you all here enough.

It appears that the reason I’ve been felling so bad is because Sjogren’s Syndrome took over big time. I’ve done 4 of the 6 weeks of MSM/DMSO IVs so far and have had some really good days lately… then a very nasty flare started this past Monday night; easing slowly now. I’ll start my 5th week of these IVs tomorrow morning.

What works best for Sjogrens? I still have plenty of Clindy IVs to do and will chat with my Dr about starting those again soon and go back on the Mino but, those things did not stop the Sjogrens from going full tilt in me. What else should I add?

[DiamondTNT]

Anybody???

What antibiotics might work best for Sjogrens?

[DragonSlayer]

Hi, DiamondTNT:

What works best for Sjogrens?

I don’t have Sjogren’s, but have AS and Sjogren’s-like symptoms are certainly a factor.

Getting out of inflammation and taking at least 11g daily EFA especially fish oils and add olive oil, also.

From reading Your history, You might have intestinal lesions that cause various reactive arthritides. The antibiotics can cause the protective mucosa lining that covers the lesions to be reduced considerably, allowing bacterial infiltration and the secondary immune response to react and produce “polyarthritis” symptoms. The oral agents might be worse than the iv administration.

I missed the reason for the Flagyl, but if it is giardiasis, then this can mimic early spondyloarthropies (AS especially) or even trigger it. Hyphae (as You are probably aware) from C. albicans can also cause LGS (Leaky Gut Syndrome) and even cause AS in a susceptible individual (usually–but not always–B27 positive).

It is good to take the antibiotics, but diet is also very important–eliminate starches and this will greatly alter the flora of Your intestinal tract and, once accomplished, probiotics can then be taken to implant a better type of intestinal guest and displace the bad guys.

Good Luck with the therapies in future,
John

[DiamondTNT]

Thank you, John! I will get this info to my Dr.

I take probiotics and the MSM/DMSO IVs have finally stopped the diarrhea I’ve have for these past few years. I don’t think I have leaky gut… never did like many of the foods that contain starch but, I will pay much more attention to that. We use almost exclusively olive oil and I take flax seed oil every day.

The Flagyl I took this past summer was to nail any ‘bugs’ in their cyst stage. I did feel pretty good for a while after I took them. The MSM/DMSO IVs have me no longer needing the cane so I am feeling better with them than without them. Dr. said it would take 6 weeks of one 5 days a week to know if they are going to really help a lot. 2 more weeks to go and I am feeling better with them… until the harsh flare I had Monday. I’ve had no antibiotics since I started these IVs and my Dr said to go ahead and do some clindy IVs which I started today. I’m going to go ahead with 10 clindy IVs over the next 5 days and see what happens. I’m thinking the Mino did what it was going to do and there are secondary infection(s) that the Mino couldn’t take care of. Hopefully a mix of antibiotics and the MSM/DMSO will get me back on track to full remission.

I see you achieved full remission it’s holding! Thank you so much for responding and you’ve helped give me a lot more hope!

[Valsmum]

Good to hear you are doing better. Are the DMSO ivs controversial? Did they help get your numbers down? On a scale of 1-10 how much pain releif did the dmso iv give you ? I’m interested in finding out more about them. Did you feel pain relief from the dmso the same day/week and do you herx from it?

Thank you!
Sheri

[DiamondTNT]

No herx from them. Not sure yet how much good they are doing other than I am no longer in need of my cane to keep my balance and I hurt less than before I started them. Controversial? I think so. Here is a website to find out more about them by a Dr that’s been using them for many years, wrote a book about it, and where my Dr has been consulting and getting the supplies to do them:
http://www.jacoblab.com/

I’ll know more in a couple more weeks.

[Author]

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