Back to square one!

[stile RA]

So….my visit with Dr. F in CA did not go as expected.  I have been on Minocin since July of 2009, prescribed by a Dr. willing to try AP.  Since July I have slowly gotten worse, more joint pain and fatigue. So my dr. and I decide I should go to an experienced AP dr. because he is at a loss as what to do. (I am only his 2nd AP patient).  So I went to see Dr. F this week and after all the tests and x-rays, he tells me I have fibromyalgia, possibly Lyme, but he still hasn't ruled out RA because of something on xray of my left wrist.  He “suggests” this long list of nutritional supplements I should take that add up to almost $500 and gives me a brochure about FM, a prescription for an antibiotic that is easier on my liver (have liver issues) and then says I'll see you in 6 months.  

What?!! Lyme?  FM?  😯

He said because there was no joint damage he could see, it probably was not RA, though that couldn't be ruled out.

All this started for me 10 years ago, first the flu like symptoms, extreme fatigue, then the progressively worsening joint pain and seeing dr. after dr who said something was wrong but didn't know what.  It was only a year and a half ago that someone finally put a name to what I thought I had and now I feel like I have to start all over again trying to figure out what is wrong with me.

I didn't know anything about FM but from what I been reading, I don't think I have it.  Dr. F pushed on all the trigger points (including a new one he said he had discovered) and most of them were painful but then anywhere you “poke” me is painful.  The only symptoms of FM that I can see I have is joint pain and fatigue.  Can you get red, swollen joints with FM?  Its almost a slap in the face to hear someone say its all in your head. I guess with the diagnosis of RA there was some vindication and I could say “See, there was something wrong!”  It puts me in mind of the headstone in the cemetary that says “See, I told you I was sick!”

I had to stop the AP before my appt.  Curiously, my symptoms worsened briefly after I stopped the AP.  Then I went back to feeling like I did prior to starting AP.

My SED rate is 43, CRP IS 9.2, ACA IgG is 34 using ELISA.  The Western Blot IGG Lyme test was positive for 2 out of 10 bands and the Western Blot IGM test was positive for 2 out of the three bands, but then there is a note on the labs that says it could give a false positive in individuals with illness longer than 1 month.  After doing research about Lyme testing I'm very confused and not really sure how to pursue this. :headbang:

I did test positive for mycoplasma, IgG 1.75 and IgM 1.09, but that's all the information I have.  Shouldn't the mycoplasma be identified individually?

I am not trying to disparage Dr. F, but I just feel like……I'm left adrift and unresolved.

All of my symptoms point to RA. I seems the most logical diagnosis but I guess a person cannot have RA and not have some joint damage?  So much effort, energy and hope for AP, that I will eventually get better and get my life back only to find out it was all for nothing.:crying:

Thanks for letting me vent.  Sorry for the melodrama.:?

 

[Maz]

[user=1140]stile (RA)[/user] wrote:

All this started for me 10 years ago, first the flu like symptoms, extreme fatigue, then the progressively worsening joint pain and seeing dr. after dr who said something was wrong but didn't know what.  It was only a year and a half ago that someone finally put a name to what I thought I had and now I feel like I have to start all over again trying to figure out what is wrong with me.

My SED rate is 43, CRP IS 9.2, ACA IgG is 34 using ELISA.  The Western Blot IGG Lyme test was positive for 2 out of 10 bands and the Western Blot IGM test was positive for 2 out of the three bands, but then there is a note on the labs that says it could give a false positive in individuals with illness longer than 1 month.  After doing research about Lyme testing I'm very confused and not really sure how to pursue this. :headbang:

Stile, your story is absolutely typical of chronic Lyme patients who get batted around for years, sometimes with all kinds of dx's, and never the correct one. There is a ray of light in all this…if you don't have joint damage, then this is pretty excellent!!! It's also pretty great that Dr F has given you a direction to pursue now…he's not Lyme Literate and I get the sense he didn't use IGeneX western blot testing, which would be a good next step, if not.

Could well be that monotherapy with minocycline just wasn't enough for you. In fact, for Lyme patients with coinfections what can often happen is that coinfections will run rampant when borreliosis is dampened down. This is why LLMDs use combination therapy with sometimes 3 or 4 antibiotics all at once. Babesia can be a devil and needs anti-protozoals, like flagyl, tinidazole, mepron, malarone, because abx won't touch it. Bartonella is another infection that can cause RA-like symptoms and needs meds like Rifampin or a fluoroquinolone, like Levaquin.

So, all in all, all is not lost…and minocycline may well have just not been the right abx or enough coverage for all the potential infections that can go with a Lyme dx. This is why the volunteers recommend that patients get the IGeneX labs run right from the get-go, because for a $200 outlay, it can save time, suffering and going in the wrong treatment direction,….and, if Lyme is involved, there is no point in seeking out an AP doc, because low dose monotherapy is (in most cases) not enough for Lyme.

Perhaps the biggest prob in your case will be that there are no LLMDs listed for Idaho. 🙁 However, there are some good ones on the west coast who may be nearer to you than Dr. F.

Do you know which bands you tested positive for on your western blot? Was it the standard WB? I think it must have been because of the “false positives” statement on the test….in chronic Lyme, there are actually more false negatives than false positives.

Probably your best next step would be to get your local doc to help you with getting the IGeneX western blot run and then getting an appt with a LLMD to get fully assessed for coinfections and to figure out the best protocol for you. IGeneX will mail a testing kit to your home and then you just get the doc to sign off on the labs (test numbers 188 and 189 for basic western blot). When your kit arrives, then one of the volunteers can help you figure it all out.

http://www.IgeneX.com  

Peace, Maz

[Peach73]

I think it should be noted that with fibromyalgia..your sed rate and CRP would not be elevated.  Blood tests are normal with fibromyalgia.  

[marypart]

[user=2089]Peach73[/user] wrote:

I think it should be noted that with fibromyalgia..your sed rate and CRP would not be elevated.  Blood tests are normal with fibromyalgia.  

Don't forget, there are a few docs out there, I think Dr. S. D. is one, who have suggested that Fibromyalgia is Lyme.

http://www.canlyme.com/fibrocfslyme.html

-Mary

RBFV Edit to remove physician's full name as per forum guidelines. Thank you for your understanding.

[stile RA]

Do you know which bands you tested positive for on your western blot? Was it the standard WB? I think it must have been because of the “false positives” statement on the test….in chronic Lyme, there are actually more false negatives than false positives. 

Hi Maz.  

The bands that are listed as being positive for were: 41  KD  (IGG) band,  58  KD  (IGG)  band;  23  KD  (IGM) band and  41  KD  (IGM) band.

I am so going to get the kit from Igenex.  I hope that there won't be an issue with my gp signing off on it.  There seems to be so much conflicting information out there that it is difficult to know who is right and who is wrong.    Thank you Maz for giving me a direction to go in.:)

[Parisa]

Stile,

It's hard when you go to the “best” and it turns out not to be the best for you.  Thankfully, you were pointed in the direction of Lyme disease and I would follow that if I were you.  We had a similar experience in my husband's case and pursuing Lyme treatment led to his finally finding a treatment that worked. 

[Michele]

Stile,

I feel your frustration! I wondered why I had so many other unusual symptoms as a supposedly “RA” patient.

It sounds like Dr. F gave you some helpful direction, even if it wasn't what you expected. Should you find lyme is the root of your illness, being on AP will have been a huge benefit to you compared to the typical RA immunosuppressants!!

I see in your followup message to Maz that you know which bands are positive from your previous tests. It may be more helpful to check in with an LLMD next instead of retesting with IGeneX. My story is very similar to yours and even with IGeneX I never had more than a couple bands positive. Those bands show up in my Quest diagnostic tests, too. There are other lyme coinfections that an LLMD will recognize from your symptoms and not necessarily determine from blood tests alone. If I recall, band 41 is “the tail” of the spirochete.

It's great that you don't have any joint damage!

Michele

[Maz]

[user=1140]stile (RA)[/user] wrote:

The bands that are listed as being positive for were: 41  KD  (IGG) band,  58  KD  (IGG)  band;  23  KD  (IGM) band and  41  KD  (IGM) band.

I am so going to get the kit from Igenex.  I hope that there won't be an issue with my gp signing off on it.  There seems to be so much conflicting information out there that it is difficult to know who is right and who is wrong.    Thank you Maz for giving me a direction to go in.:)

Hi Stile,

Okay, so you tested positive on IgM (meaning current infection) on two double-starred bands (23 and 41). Band 41 is usually the first antibody band to show up and on it's own really doesn't mean a heck of a lot on its own, as there are other spirochetal infections (oral spirochetes that cause gingivitis, stomach spirochetes that cause ulcers, etc) that also have tails (or flagella)…but in combination with Band 23, this is signficiant, because Band 23 is also known as Outer Surface Protein C and it's quite specific to borreliosis.

This is pretty good going for a standard test result, Stile! If you read Dr. C's explanation of the various bands and what these mean, you'll get a fuller understanding of why LLMDs feel it's safer to treat than not to treat when such significant bands appear.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0

It's quite possible that with IGeneX testing, you'd also test positive on some bands that are not included in the standard tests (namely, bands 31 and 34) and that would give you a fuller result, but a good LLMD would likely treat you based on your clinical presentation of symptoms and the test you've already had done. It's not guaranteed, because Lyme is pretty controversial now and some docs are being particularly careful, but this is something to ask should you call an LLMD for an appt.

If this helps, I tested IGeneX positive, but not CDC positive for Lyme and only on two bands! Bands 39 and 41, which are double-starred, significant bands. I also got indeterminate hits on Bands 23-25 and 31, as well, though, which are also double-starred bands.

Here is another link you might find interesting: 

http://www.lymenet.de/labtests/brenner.htm

This video is also worth sitting down to digest, as Dr. B (wrote ILADs-approved treatment guidelines which are a kind of gold standard in Lyme Literate circles for treatment) talks about the inadequacies of Lyme testing and how they removed bands from standard tests that basically leave many Lyme patients stranded without a diagnosis:

http://www.youtube.com/watch?v=OIsj9IgyP_I

And, to get a taste of treatments for Lyme? Click on this link to download Dr. B's treatment guidelines. You may want to print it out to get an idea of how complex Lyme treatments can be and why it is so important to see a good LLMD to get fully comprehensive antibiotic (and sometimes, adjunctive) treatments:

http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf

Hope this helps further, Stile! Although your vent is perfectly understandable, it really is better the devil you know. 😉

Peace, Maz

[Roz]

Hi Their,

It's nice to meet sorry under these circumstances though.

I have had the Fibro/RSD DX then I went into positve R/A.

Also I saw MD L. at MD. F. office I was only their once.

My Lyme test at the office all showed INC. 

So in my opinion it wasn't accurate, so I had get tested thru Igenix.

Hang in their and hang with us, Roz

 

[stile RA]

Wow Maz, you are such a fount of information!;)  It is fortunate for us that you have already disseminated most of the information already. It certainly is a blessing to have someone explain it.  I'm thinkin' you should go into practice yourself!:roll-laugh: 

I think I found a LLMD dr. relatively close, so as soon as I can muster up the $ I will be making a trip to see her.

Thanks for the encouragement. 

Dr. F gave me 500 mg Azithromycin tabs to take, 3 days a week.  I wonder if I should pursue this avenue, go back to the 100 mg Minocin MWF or hold off until I see a LLMD.  Any suggestions?

Cindy

[Maz]

[user=1140]stile (RA)[/user] wrote:

Dr. F gave me 500 mg Azithromycin tabs to take, 3 days a week.  I wonder if I should pursue this avenue, go back to the 100 mg Minocin MWF or hold off until I see a LLMD.  Any suggestions?

Hi Cindy,

Did Dr. F. tell you to continue your mino in addition to the zith, or just take the zith? I was actually on a combination of zith and mino for my RA/Lyme and it worked a treat! The two antibiotics complement eachother really nicely and zith has some nice bacteriostatic and bacteriocidal properties, so more broad spectrum than mino alone. Borreliosis is pleomorphic, meaning it shape-shifts from cell-walled spirochetal form to L-form to spheroplastic dormant cystic form. Zith hits all forms of borreliosis, whereas mino would only hit the cell-wall deficient forms. It is also sometimes used (in combination with anti-protozoal meds) to treat the common coinfection of Lyme – babesia. Needless to say, why choose between one or the other if Dr F has prescribed both? The doses used by an LLMD would be much higher and the combinations may change later, but it's a start! 🙂

Let us know when you get rolling with your new LLMD and what transpires in terms of treatment. Hope it won't be long for you till you can manage a first appt and work-up.

Peace, Maz

[stile RA]

[user=27]Maz[/user] wrote:

[user=1140]stile (RA)[/user] wrote:

Dr. F gave me 500 mg Azithromycin tabs to take, 3 days a week.  I wonder if I should pursue this avenue, go back to the 100 mg Minocin MWF or hold off until I see a LLMD.  Any suggestions?

Did Dr. F. tell you to continue your mino in addition to the zith, or just take the zith?

 

Dr. F. just gave me the zith and didn't mention anything about the Minocin.  It never occured to me to ask if I should take them both, as I didn't know you could take 2 different antibiotics at the same time.  I have a script for the Minocin through my AP dr, so I could just take them both.  I'm thinking Dr. F gave me the zith for the mycoplasma I tested positive for and isn't addressing the Lyme.  He did say he might want to do some more blood work in 6 wks to recheck.

[stile RA]

[user=1758]Roz[/user] wrote:

I have had the Fibro/RSD DX then I went into positve R/A.

Also I saw MD L. at MD. F. office I was only their once.

My Lyme test at the office all showed INC.  

 

Hi Roz.  How was your visit with Dr. F?  Do you have any plans to see him again?

Cindy

[stile RA]

[user=2151]marypart[/user] wrote:

[user=2089]Peach73[/user] wrote:

I think it should be noted that with fibromyalgia..your sed rate and CRP would not be elevated.  Blood tests are normal with fibromyalgia.  

Don't forget, there are a few docs out there, I think Dr. S. D. is one, who have suggested that Fibromyalgia is Lyme.

http://www.canlyme.com/fibrocfslyme.html

-Mary

RBFV Edit to remove physician's full name as per forum guidelines. Thank you for your understanding.

This is a great sight!  Thanks, Cindy

[Maz]

[user=1140]stile (RA)[/user] wrote:

It never occured to me to ask if I should take them both, as I didn't know you could take 2 different antibiotics at the same time.

Yup, check out the link in my sig line…I took the mino/zith combo for 16 months. If it turns out you do have Lyme and coinfections, Cindy, don't be surprised if a LLMD puts you on 3 or 4 different abx at once. 😉

Peace, Maz

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