Test for strep and lymes

[spfister]

I am seeing a AP dr next week.  He was on the list Kim sent “Thank You.” 

Dr K is in Woodbury MN.  His receptionist said he uses the Roadback protocol. I was confused about the lymes thing I have been reading on many the posts.  Could it have a part of the RA I have had for 15 years?  Should I talk to this DR. about a test? 

Also is there any benefit to using minocin over minocylcline?

Pehaps he can answer these questions also.

Thanks everyone and the volunteers for your help!

[spfister]

I looked at some older posts and got my answere to mincin verses minocylcine:)

[Maz]

[user=2270]spfister[/user] wrote:

Dr K is in Woodbury MN.  His receptionist said he uses the Roadback protocol. I was confused about the lymes thing I have been reading on many the posts.  Could it have a part of the RA I have had for 15 years?  Should I talk to this DR. about a test? 

Also is there any benefit to using minocin over minocylcline?

Hi Spfister,

A number of people here are finding Lyme as a component in their rheumatic disease. If you are questioning it, then it's just prudent to get the labs run to check for this possibility, because Lyme treatments vary significantly from Brown's AP and would require the help of a LLMD (Lyme Literate MD).

Perhaps Dr K will sign off on the IGeneX lab order for you? It requires a doctor's signature and you could have IGeneX send you a testing kit in advance of your appt so you have all the paperwork ready and he just needs to sign off on it. If you decide to do this, then we can help with what labs to have run initially and provide links on how to interpret the results when they come back to the ordering physician…usually 2 to 3 weeks and the basic Western Blot runs at about $200. If the doc is not keen to run the tests, just ask him to humor you…after all, it's out of pocket to you.

Your RA is pretty longstanding and you don't mention degree of severity, but either way (Lyme or not) you may want to consider IV therapy as an initial jumpstart to your AP and as boosters along the way. You can always switch things up later if you do find you have Lyme, too.

If you can add your diagnosis, duration of disease and current meds to your sig line, it really helps others to respond to posts. You can do this by going up top to “My Account” and clicking on “Profile” to fill in any details you want to add…the sig line box is right at the bottom of this form. 😉

Glad you found info on the brand vs generic question for mino. The search box above is a great tool! Commonly preferred generics are made by Teva or Watson…best to avoid Ranbaxy, which was called out by the FDA last year for producing inferior generics. I personally chose Stiefel brand Minocin (ordered from Canada) just because I was so severe and, being a newbie, I didn't want to mess around with generics and wait to see if they'd work or not. The pelleted brand is also thought to have a more even time-released formulation in the gut and easier on the stomach than powdered generics and tablets.

Hope this helps!

Peace, Maz

PS If Dr K uses Brown's protocols, he may well also use the TARCI labs for mycoplasma, strep and chlamydia testing. A regular ASO test through Quest or Labcorp could also check for strep and may save you some money. Just in case you want to have TARCI testing done, you can also call this lab and ask for a testing kit to be sent to you. Some AP docs do this testing to code IVs for infection to get them approved.

http://www.tarci.net

[spfister]

Thanks Maz:

I have my diagnosis and medication the signature box doesn't it show?  Hope so.  Anyway I have had a pretty severe case of RA for 15 years, a lot of disability in my hands and feet, I starting minocycline M-W-F 100 mg last week.  When I was on Humira for 5 years the progression and pain was pretty much stopped, but with a price to pay to my immune system:(

I have a gluten intolerance and allergy to dairy and eggs.  So my diet is pretty healthy fruits, veggies, lean meats, and no sugar. So I guess you could say a leaky gut.  No fun

I will check with the new Dr about doing Iv's.  He is a family practice Doctor, hopfully he can set it up so I can get them.  And I'll see what he says about the lymes test.

Thanks so much for sharing your wealth of knowledge.

Take Care

Shari

[Maz]

[user=2270]spfister[/user] wrote:

I have my diagnosis and medication the signature box doesn't it show?  Hope so. 

 

Shari, yes it shows! Silly me…I should have remembered the sig line disappears on this system when you click on a post to respond and scroll down the page, so it looks like a person hasn't added their sig line. Yours is there, though….and was just a 50-something moment on my part! :roll-laugh:

All the best for your appt, Shari, and please let us know how it goes for you.

Peace, Maz

[spfister]

I saw Dr K in Woodbury Mn yesterday for AB for my longstanding RA.  He is a family Practice Dr.  referred to me from The Road Back.  He said he has treated dozens of patients now with the antibiotics with some very impressive results!  

He switched me from minocycline to the brand version Minocin M-W-F  one 100 mg working up to 2 a day M-W-F.  He is testing me for lymes using the lab they normally use.  I will see what that says, before suggesting getting my own test from IGenex. 

He is going to add oral clindamyacin when I see him  again in 3 months.

He also says the low dose LDN seems to help patient.  I will consider adding this too, but because of the sleep issues am a little hesitent.  Tried it before an it seemed to keep me awake. 

I did forget to address the strep issue though.  Does the ASO for strep tell if you are a carrier of strep?  I know for a fact I had strep 5 weeks ago and the the Dr I had then gave me Cipro to cover strep and anything eles going on in my lungs.  Would it make sense to get this test or just assume it's a problem?

All in all the visit went well, and he was a nice Dr. willing to work with you 🙂

S Pfister

[spfister]

I just got my test results onlines:  the lymes test was negative.  So I will think about doing the Igenex testing.  But he did state that the Igenex testing usually seems to come back positive.  Why is that? Is it a more accurate test?

My Ra factor is at 798 up from July 638.  He thinks this will be coming down with abs

C reactive protein 0.5

[Kim]

Hi Shari,

Please do a search on the board for “Lyme testing” because it will explain the Igenex testing versus other labs.  Basically, Igenex tests for more strains, but contrary to what doctors may tell you, there are very few false positives, maybe 3%, according to my LLMD.  Many more false negatives.

It is worth pursuing because the Lyme treatment is vastly different from normal AP treatment.

Take care…..kim

[spfister]

Thanks Kim

I have been studying up on lymes.  I'm in heavy tic area  and I seen some last year, I have deer in my back yard too!  So is certainly a possibility. 

I have had RA for over 15 years and it is pretty indicitive of RA affecting my hand joints ” knuckles” badly.  I do not have the headaches that I read about many people with lymes have, but my neck has a lot of pain which sounds a bit lymes.  The rheumatologist I saw didn't have a reason for my neck ache because it's not normal for RA. 

Just trying figure if I should get the Igenex test also.  I guess if the abs arn't helping by my next Dr. visit I will.

Thanks for your help in trying to steer me in the right direction.  What about the Wester blot?  My Dr. mentioned if my test was positive then they could do the western Bot.  Just trying to figure out how I can do this with insurance.

Also if I needed to go to the llmd would my insurance cover that?  I suppose that would have to be out of pocket since the insurance people arn't convinced of the dx.

That would be kind of a bummer.:doh:

S Pfister

 

[Kim]

Hi Shari,

Neck pain is a classic Lyme symptom, and if I were you, I would definitely have the Igenex Western Blot.  You can have that done for around $200 and some insurance companies will reimburse you, although you pay up front.  You have to have a doctor sign off on the testing, however.  If you search “Lyme testing” it will walk you through the process.  Even a “negative” test result with Igenex's more sensitive testing could actually be highly “positive” if you hit on very Lyme-specific bands, that's why it's important to get copies of the test showing your result for each band tested.  Testing misses so many people that Lyme is diagnosed on a clinical basis, but it's nice if something shows up on a test for confirmation.

I've sent you a list of LLMD's (Lyme literate medical doctors) for Minnesota in a private message (top right of this page) if you wish to pursue this angle or have trouble finding a doc to help you with testing.  Most LLMDs don't take insurance, rather you file for reimbursement yourself.  My doctor is out of state and my insurance pays at the out-of-network rate.  You could sort that out with the office ahead of time.  Another heads-up is that most LLMDs have more patients then they can handle and have long waiting lists so you might want to get on a list or two while you're having the tests run.  Igenex has about a 3-week turnaround.

Lyme is difficult to treat and can have devastating effects if left untreated.

Take care…..kim

[spfister]

Thanks Kim:

I will ask the new Dr. to sign me off and get the kit next visit.  Just tonight my husband found a tick in the kitchen.  I'm starting to really get grossed out by this.  I am going to do some more studying up on the subject.  Just never really thought much about it.  I just figured it was extremely rare,  but sounds like unfortunately it might be a much bigger problem than they would like us to believe. 

[Kim]

[user=2270]spfister[/user] wrote:

Thanks Kim:

I will ask the new Dr. to sign me off and get the kit next visit.  Just tonight my husband found a tick in the kitchen.  I'm starting to really get grossed out by this.  I am going to do some more studying up on the subject.  Just never really thought much about it.  I just figured it was extremely rare,  but sounds like unfortunately it might be a much bigger problem than they would like us to believe. 

Lyme is of epedimic proportions and is still grossly undiagnosed or under-diagnosed, especially in the midwest, and if it is diagnosed it very likely will be under-treated. :headbang: 

You can call Igenex and order the test kit yourself to be sure you're getting the right one, and then have your doctor sign off.

You are wise to run the test.

Take care…..kim

[Peach73]

Spfister…if you have a history of Strep throat infections you should have the strep titer drawn.  My titer was elevated…and my AP was switched from mino to azithromycin.  I've been on this almost a week along with Synthroid for hypothyroidism I was just diagnosed with and I am feeling extremely better.  I don't know which one is helping but whatever it is I am happy!  I haven't had to take anything for inflammation in four days!  

I think it's important to have the Strep test.  I wish someone would have checked mine sooner but at least they have now.  I am SO thankful for this site and my AP doc!  

[spfister]

Kim:

I am looking to get the kit in advance of my next appt with the Dr.  I am sure he wont mind signing off on it.  You said make sure I get the correct kit, which kit do I order?  I'm guessing the 200.00 one.  My Dr. probably doesn't know what it means or how to intrepret it.  If it shows possitive would I take that to a LLMD on the list you gave?  So many questions.  Wish this were more simple:doh:

Thanks,

S Pfister

[Kim]

[user=2270]spfister[/user] wrote:

Kim:

I am looking to get the kit in advance of my next appt with the Dr.  I am sure he wont mind signing off on it.  You said make sure I get the correct kit, which kit do I order?  I'm guessing the 200.00 one.  My Dr. probably doesn't know what it means or how to intrepret it.  If it shows possitive would I take that to a LLMD on the list you gave?  So many questions.  Wish this were more simple:doh:

Thanks,

S Pfister

Hi Shari,

You can call Igenex and ask for test #188 and #189 for the basic Western Blot and that will be enough to get you started (should be around $200).  You'll probably have to wait to get into any Lyme doc so you might want to go ahead and make an appointment and then change it if the timing doesn't work out.

Once you get the results, which they will only send to your doctor, make sure you get a hard copy and post the results and we can help you sort through it.

Take care…..kim

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