It’s been awhile but so glad to be back!

[Patti D]

Hi all,
I feel like a naughty child away on vacation. How is everyone??? I have not checked in in so long mainly because I have been so well, so busy and so happy:))) A wonderful summer with kayaking, swimming, a wedding in Mexico for my son and his beautiful bride and still taking care of 2 houses, my own business and lots of gardening. For those just new to these horrible diseases, hang in there. A new normal does happen and when those small improvements add up to more good days than bad, you feel hopeful, satisfied in your decision for AP and blessed to have”this family” for support.
I am in the middle of my 4th year on AP and for the first time may be having a flare. Initially I thought it was too much kayaking or swimming( I am up to almost 1 mile at a time ) but it seems to be staying around pretty much for the last three weeks maybe 4. Mine is mostly in the tendons & muscles in arms and top of hands and one ankle. No reddness or hot to the touch or visble swelling or fatique or brain fog. Just stiff and painful. So crazy. Also, like Ruth(spacehoppa) my doctor retired early because of the new electronic record keeping requirement. So I am faced with a dilemma .
Should I see a rheumy again? Suggestions anyone? I take 100mg on mino daily. Also one aleve at bedtime all though I would like to take 2 today. Is it possible something triggered this. Any suggestions would be helpful.

I promise….I will check in more often. Is Kim back on the board too?

Peace friends
Patti

[lynnie_sydney]

Hi Patti – Good to see you and to know that it’s well-ness that’s kept you away. Good for you! We’re only just up and running again after a couple of weeks of problems following a hacker, an upgrade then some weird stuff……..so forum may be a bit light-on people wise at the moment. Sorry to hear you’ve had a setback. It could have been caused by a number of things – including the extra physical pressure on your body (did you indulge dietary-wise also??). You may just need to add something in to help bring things back under control. Cant advise you but, if it were me, I wouldnt be going to see a rheumie, I’d know what kind of regimethey would want to put me on. Sounds like you may need something more, at least for a while, to boost the action (Clindy perhaps?).You could seek out another doc from the lists or ask for suggestions. Or you could, perhaps, co-opt a local doc to liaise with Dr S in Iowa, I believe he does this quite often. Although that’s an AP option versus a “Lyme” one. Having been dx with Lyme, I am surprised you are on mino monotherapy, which seems quite unusual. Were you seeing an LLMD? Am sure others will chime in with btheir thoughts. Lynnie
P.S. No Kim is not back – just came back briefly to tell us about Michelle’s Mom.

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)

[Patti D]

Hi Lynnie
So nice to have you chime in right away. You know we are having weather changes from hot to cold and back again and I think I may have developed some allergies . My Doc that retired had me on clindy one day a week. I took it about 1 month and stopped as it didnt do a thing. Now that you mention it I was with family on a short 5 day holiday and may have been drinking too much wine:) I will try changing things up this week, diet wise. At one time an anti inflammatory diet link was posted. Could you redirect me to that? Also, should I try the lemon /olive oil drink again? I have never seen a lyme doctor and was treated mainly for RA with the catalyst being lyme. I may need another list of local doctors or other suggestions. I have not had xrays in 5 years nor seen a rheumy. Not crazy about seeing a rheumy again but my options for a good DO in the area are limited.

Anyone from Wisconsin: Milwaukee area a DO who knows about RA/lyme & all of the other goodies that go with this, please send me a PM. Much appreciated!
Thanks Lynnie! So good to SEE you again:)
Patti

[A Friend]

@Patti D wrote:

Hi all,
I feel like a naughty child away on vacation. How is everyone??? I have not checked in in so long mainly because I have been so well, so busy and so happy:))) A wonderful summer with kayaking, swimming, a wedding in Mexico for my son and his beautiful bride and still taking care of 2 houses, my own business and lots of gardening. For those just new to these horrible diseases, hang in there. A new normal does happen and when those small improvements add up to more good days than bad, you feel hopeful, satisfied in your decision for AP and blessed to have”this family” for support.
I am in the middle of my 4th year on AP and for the first time may be having a flare. Initially I thought it was too much kayaking or swimming( I am up to almost 1 mile at a time ) but it seems to be staying around pretty much for the last three weeks maybe 4. Mine is mostly in the tendons & muscles in arms and top of hands and one ankle. No reddness or hot to the touch or visble swelling or fatique or brain fog. Just stiff and painful. So crazy. Also, like Ruth(spacehoppa) my doctor retired early because of the new electronic record keeping requirement. So I am faced with a dilemma .
Should I see a rheumy again? Suggestions anyone? I take 100mg on mino daily. Also one aleve at bedtime all though I would like to take 2 today. Is it possible something triggered this. Any suggestions would be helpful.I promise….I will check in more often. Is Kim back on the board too?

Peace friends
Patti

Patti, just read over your report. Was so happy for you when I read all the good news! Sad for you, then, as I read about another fickle turn by these rheumatic illnesses.

This is just a shot in the dark: Have you thought that perhaps your gut system may have become unable digest/absorb adequate nutrition from your food? Daily Minocin, when you’ve been in a “recovery mode” for a while, may have been enough to compromise the gut a bit. And, with the amount of exercise you are doing, this can use up much of your needed mineral and vitamin stores, possibly creating a shortage of essential amino acids, minerals, and other nutrients, to repair those muscles, tendons, etc. In order to break down protein/amino acid foods so the ones designated essential amino acids can be converted into other amino acids, and perform detoxing tasks as part of their metabolic detoxification duties. [Something else I read about this same time, is that B6 must be converted to P5P form in order to “split” amino acids to do what they need to do. If the gut is compromised, the gut will not be able to manufacture B vitamins as it normally is able to do, and you won’t have enough of one especially needed. So many medical problems in chronic illness reply on B-6/P5P. I found it amazing over several years to keep learning about new dx’es all the time dependent on B-6/P5P — juvenile onset diabetes, schizophrenia, pellagra, carpal tunnel, MORE ….. and now needed amino acid deficiency for lack of P5P to do what needs to be done for some of the amino acids to do their specific job. I was about to order their products, when I remembered the ImmunoPro I had taken for a different need back about 2004… which worked and my AP doc proved it by retesting my abnormal lab after 6 months, and not being on AP during that time because of a really bad reaction.

Let me suggest that you do a search for a web site which you’ll probably hit by using the words “NZymes+Articles.” Even “NZymes” will probably hit it. EDIT: Try this link: http://www.nzymes.com/store/pc/articles.asp?type=8&panel=4&a=people
Once there, click on “For People,” as the information appears for both. I found their articles on the Antioxidant properties of their products had the effect of quickly helping me to understand how this fit with my own problems, and educating me on a subject I knew far too little about. (At first, I had to laugh about how much I loved their educational material — thought friends would think I’d lost my mind if they went there and saw all the animal information. Well, I’m still impressed with them (accidentally found them, while looking for help for my granddog who had a pretty severe accident and had surgery) My dau. now tells me even when my granddog won’t eat, she loves her treats with the enzymes and gobbles them down. If you indulge me (lol) by going there, be sure to click on and watch the videos about animals with even severe back injuries, etc. (Lily’s video is impressive.) Besides the granules for people, also read about the drops for people, to be taken in conjunction with them, and address problems for those who have been on antibiotics.

Hope you will turn your problems around very soon! Good luck to you. Your problems may be from something not related to any of the above, but while we believe exercise is very good for us, very often onset of chronic illness begins when people have been over-exercising for what their bodies are capable of replacing/repairing.

[lynnie_sydney]

Patti – this thread may be of interest to you. At the 4 year mark, wonder if it’s indicative of a time when you may need to do a few months rotation to another drug.

viewtopic.php?f=1&t=5833&p=52459&hilit=alkaline+diet#p52459

Not sure about the anti-inflammatory diet you are referring to. There have been so many posts regarding diet. If you can give me a little more information on which aspect you are particularly interested in, it might ring a bell. Otherwise, try using the search function at the top of the front page of General Discussion and type in various key words and see what comes up.

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)

[Maz]

@Patti D wrote:

Anyone from Wisconsin: Milwaukee area a DO who knows about RA/lyme & all of the other goodies that go with this, please send me a PM. Much appreciated!

Hi Patti! Long time no see! Always lovely to see your smiling face, but don’t like it when you have to come back due to a return of aches and pains.

Well, you know me…my best suggestion is to get to a LLMD (integrative, if poss) and figure out whether there are untreated coinfections arising. Lynnie’s and AF’s suggestions make good sense, too.

I’ll send you the one LLMD we have listed for WI who was trained under Dr. J. I don’t know if you have considered this doc before, but judging by his website, he looks like a great option….listed as both an AP doc and LLMD. Course, he’ll be out of pocket, but at this stage of the game, it would probably be worth delving a little deeper. You’ve done so well up till now on just monotherapy, but it would be a nuisance to keep having a dark cloud hanging when it might be something fairly simple.

Another suggestion for the suggestion box is to research optimal ways for detoxifying – essential for chronic Lymies and anyone with rheumatic disease. AF mentioned ImmunePro which is a good one. I’m currently trying Immunocal, but it’s pretty expensive and waiting on my new LLMD to re-stock with a less costly undenatured whey protein. This is an amazing way to boost glutathione in the body (body’s master detoxifier). Some LLMDs and AP docs are also offering Glutathione IV pushes now which are brilliant for lowering inflam swiftly and, given the choice of prednisone or a Glutathione IV push, I’d shoot for the latter every time. The IV push is purely palliative and temporary, as one still needs to work on raising glutathione levels with diet and supps. To me, this method makes perfect sense….inflammation caused by oxidative stress can be stamped out with anti-oxidative therapy to quench free-radical damage. The damage caused in RA is the direct result of oxidative stress (if one adheres to infectious theory, oxidative stress is caused by bacterial toxins). Some folk also use IV Vit C or Myer’s Cocktails, which are also great, but glutathione is still the master detoxifier and to receive full effect of Vit C, one still needs to boost glutathione in the body.

I’ll send the WI LLMD contact info and hope this doc can move you closer to remission and sticking there! 😉

[Patti D]

Thank you all for your responses: Sure do appreciate the help everyone gives so freely.

AF The enzyme replacement with good probiotics is a good idea to look into. The problem I have had with probiotics is they causes extreme constipation and bloating and stomach upset. Have you tried this brand? I need the mildest brand out there.

Lynnie, Maz & AF

There are a couple of things I realized I was NOT doing correctly. I did not take any Vitamin D3 all summer as I was outside so much. I really noticed a huge difference in how I felt when I was taking D3 at 5000units/day. I am back on them.

I also reread Dr. Browns literature about plateaus and changing up the meds to doxy and then going back to mino. With that idea I had to take care of the awful doctor issue. At the insistence of my hubby I went to his doctor for the first time today. Unsure what this will bring but wants me to go to an infectious disease doctor who is the “lyme expert” . He looked me over checked my joints and said”your hands do not look like you have rheumatoid” They look normal. Did state he only sees about one lyme case per year so really wants to refer out for this. Tomorrow he is doing a full lab work up. I haven’t had this done for a year. Complete CBC,metabolic panel, thyroid function and fasting lipid panel. Also a CRP, Sed rate & rheumatoid factor at my request. I have no idea what these tests will bring but I do know I don’t feel well. The aches & pains are controlled with 2 aleve .

I do think I know what part of the problem is. Again thanks to Dr. Browns book I reread about the connection between periodontal disease and a flare. Well, tuesday I was at the dentist for cleaning and check up and low and behold I have pockets measuring at 5 & 6mm deep in 4 areas which indicates deep infection in the gums. So all 4 areas in infected gums were injected with arestin ( MINOCYCLINE) Sure hope it will help but now I have to see a periodontist for treatment in 4 weeks after the arestin gets a chance to work.My new dentist wants me to get my teeth cleaned every 3 months to keep the periodontal disease in check. I educated her too about the correlation between RA & gum inflammation.

I know Maz you have recommended time & time again a lyme doctor but they are not covered by insurance and all of the supplements are overwhelming to me. Dr. W wants his patients to join a group first prior to treatment according to the clinic literature. I will check for prices but he is 2 1/2 hours away too.I am not ruling this totally out yet but right now am paying for acupuncture for my poor arthritic dog Winnie. He is dragging both legs with a herniated disc. yes is is old, 11 but has quite a sparkle yet in his eyes. Winnie & I tell the weather together as we are both achey at sudden weather changes.

This new doctor changed my diagnosis from rheumatoid arthritis to arthritis with an unknown etilogy. This is getting to be a real
difficult thing to get to the bottom of. Should I see this infectious disease doctor or not. I am still on the mino and he did take Doctor Browns physician packet and right down the name of the book, the Arthritis Breakthrough. He agreed if this treatment is working that I need to stick with it. Now the question is is it still working or am I feeling crappy because I have an infection in my gums which may have triggered the joint pain.
Thanks friends! Chime in anytime .

Well wishes to all :))

patti

[lynnie_sydney]

Patti – really hard to state anything categorical (even the docs are not doing that I see!). However, you might want to get your D levels checked to see if the no D3 has made a difference – low D can mean pain levels increase. And I would lay money on the fact that there would be some connection with your current infected gums. Am rather surprised he hasnt rx’d you something like amoxycillin initially for that. Yes I’d ensure a regular cleaning. I’d also consider the mouthwash we spoke about some months back – 1/3 hydrogen peroxide (kind you can get in bottles from pharmacy) to 2/3 water and some sea salt. I use that regularly. That’s the one Dr Nikolas Hedberg states is the ‘world’s best’ mouthwash in terms of getting rid of mouth bacteria.Am sure others will have perspectives on all this for you. Hope things settle down soon for you.

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)

[Patti D]

Thank you Lynnie,
I am going to stop at the pharmacy and pick up the hydrogen peroxide. I was putting 1 tsp. Of hydrogen peroxide on occasion in the water of the water pic based on what I read here about the benefits. I also switched up mouthwash that has Hydro-perox in it. I put a call in to the periodontist already this morning but he is not in the office again until monday. Also am putting a call in to the doctor to get the D3 checked today as well. Thanks for catching that. I bet any money it is low. Both issues if these are the cause have some easy type of solutions to keep things in check.
I just got up 15 minutes ago and can make a perfect fist. Ankles are good, shoulder pain minimal. Crazy stuff!

Patti

[lynnie_sydney]

Good news – may be the injection of the arestin has worked on the gum infection. Did you see the article in the Fall e-bulletin linking gum bacteria to RA? Here’s the link if not
https://www.roadback.org/EmailBlasts/ebulletin_fall10.html

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)

[Patti D]

I did not get the fall copy. Am I still on the list?
Patti

[Trudi]

@Patti D wrote:

my poor arthritic dog Winnie.

Hi Patti–
Sorry to hear about all the troubles you’ve had recently. I’m certain it will all work out for you.

A couple of weeks ago a woman posted on earthclinic.com that her arthritic dog did real well on gelatin–

09/04/2011: Dalene from Johannesburg, South Africa writes: “This remedy helped my old arthritic dog recover, nothing short of a miracle, he’s like a young dog after the Prednisone the vet prescribed nearly killed him! I suspect this might help for human arthritis? I give him a teaspoon of unflavoured gelatine every day, dissolved in some warm (not boiling) water, add to his food and let cool. It’s tasteless so no prob there, and he also gets a fish oil capsule twice a week. He weighs about 10kg so the dose must be adjusted for bigger dogs. God bless al you dog lovers”
http://earthclinic.com/CURES/arthritis4.html

So I just checked and found this article:
http://www.dailypuppy.com/articles/gelatin-for-arthritis-in-dogs/f8ee02cf-fb90-a620-44e6-c532cac64dcf

I also came across this article about how good it is for humans:
http://www.myarthritisreliefcenter.com/arthritis-product-reviews/the-good-old-fashioned-arthritis-cure-knox-gelatin/

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?

[Patti D]

Hey Trudi 😀

How are you doing??? Hope you are feeling better than the last time we talked. I have not given up on your doctor yet(Dr. M in Waukesha but need someone for the everyday stuff and she is totally out of pocket and takes no insurance. Maz gave me information on Dr. W in the dells so that is still an option for just the lyme which he/she? indicates is all they will work on so I still need a primary doctor. This infection disease doctor out of froedert is a possible next step. Based on the results from many on this board, if I don’t know his position this could be a problem. I have the referral but not sure I want to see him.

Does Dr. M know how to change up antibiotics for these infections? She said nothing to me about additional antibiotics for the lyme so really not sure.It is all so specific to the patient.

Thanks for the concern from Winnie. I said no to the steroids so he is on a Non-steroidal anti inflammatory and seems to be a little better. I am going to try acupuncture to displace the fluid around the herniated disc. I am not ready to give him up to doggie heaven yet. Besides what would Sarah his sister do without him 😥

Sending well wishes to you neighbor 🙂
Patti

[lynnie_sydney]

I did not get the fall copy. Am I still on the list?

Patti I wouldnt know – suggest you re-enter your email address on main site.

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)

[Patti D]

Hey Lynnie,

Super Duper Maz already sent me off a copy. Thanks to both of you.
I got your response just in time to get the Vit D added to the bloodwork today and to recall that I had a prescription for some microbial mouth wash from the periodontist and I had 1 refill left so. You were a Godsend 😉 Thank you!! I will post results of blood work when I get it. Now to stay on top of this periodontal disaster. Funny, my gums don’t even hurt. Go figure 🙄

Happy days !

Patti

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