Hello! I'm new here.. and have a couple questions.

[Ddubya]

Hello,  I am new to this site… my name is Dee.  🙂

I'm glad I may have found another way to go about treating this disease.  A little history first.. I started having pain and inflamation in my shoulders 6 years ago.. it would be really bad.. then just go away.. soon other joints were involved… my fingers, wrists, knees, elbows.  It seem to just go from one joint to the other.. with weeks or months sometimes with no symptoms at all.. other than fatigue.  The longer I went on like this though.. the less time I had in between flares… and the stiffer I felt… it would take me 2 to 3 hours after getting up to feel normal.   What I found most odd was that I could have such excruciating pain in my joints… and then a couple days later be fine.  I went to see a Rhuematologist (14 months ago) who xrayed my joints and said there was no damage… he said I had fibromyalgia and needed to walk.. I felt blown off by him.. and shortly after that visit I started having a lot of pain and swelling in my feet.  I had never had my feet affected before, but like a good trooper.. I tried to walk.. and work… I told myself it was fibro and to buck up, but things just got worse. 
 
 Then one day my hands were swollen badly and my son said.. “Mom you need to take pictures and document this!” (since it seemed everytime I would get an appointment with a doctor… I would be fine that day. ) I did what he suggested.  I took pictures of my swollen hands and my extremely swollen foot.  I took them into my family doc and he said.. ” I think you need to see another rhuematologist.  Thank the Lord someone finally believed I had something wrong with me!  
 
I had to stop working this year.. I just couldn't do it anymore. 🙁  Walking had beome so painful.. my left ankle was the worst.. it had been swollen for months!  By the time I saw this other rhuematologist…  I was using a cane… and somedays I would use a walker…  and somedays I was unable to walk at all.  My first visit with him was a couple months ago.  I liked him at first… he checked my joints… well, except for the one I was having the most problem with.  He said he believed I had palindromic rhuematism..  because I had  no joint damage.. He never took xrays of anything.. he ordered some blood work, put me on steroids for two weeks.. and told me to come back in a couple of months. I just had my second appointment with him this past Friday (still with inflamation in my foot and fluid on my ankle)   He took all of seven and half minutes to tell me I have palindromic rhuematism.. not to worry about my hands deforming (because I am a musician and was very worried about that) he said that was not going to happen.  He told me since I had been having symptoms of PR for 6 years…  if I was going to go into full blown RA I would've done it by now.  He still insisted I had no joint damage.. I told him I've lost mobility in my foot and my ankle is sooo stiff.. I asked if the swelling went down (he prescribed prednisone again) would my mobility come back.  He said  “It might.”  Hello!!!  That sounds like joint damage to me!!  Once again.. he never even checked my foot out… no xray.. no anything!  He said I tested postive for two RA tests… other than that he didn't go into my lab work results.  He said palindromic rhuematism is a variant form of RA and he wants to treat it aggressively.   He prescribed methotrexate.  He never told me about any of the side affects.. only not to drink because it was hard on the liver.. and to come back in 3 months so they can do blood work to see how I'm doing. It was like this man was contradicting himself.  I mean,  if I don't have RA and I'm not going to get it… why put me on methotrexate?  Wouldn't something less toxic be better.  Nothing he said or did makes any sense to me.
 
When I got home and read up on this drug.. I was terrified!  I started looking for alternative ways to treat this, because I don't care what this man says.. I think I'm in the early stages of RA…  mainly because the inflamation doesn't go away like it used to.. and I am extremely fatigued and have stiffness all day now.. and if I just do a a few hours work around the house… all of my joints hurt and I'm on the couch for hours!  I feel this rhuematologist is just one more doc blowing me off.  Am I  expecting more than I should from a rhuematologist?  And please someone correct me if I'm wrong, but just because I've had PR for 6 years.. doesn't mean I can't go into RA at anytime does it?  I mean couldn't I have PR for 10 years and go into RA? I am afraid another joint will start hurting.. and it will not go away.. and then another… and another.  I'm at a loss as to what to do.
 
Thanks for any help anyone can offer… and by the way.. no need to tell me I need to find another doctor.. I'm just wondering if it has to be a rhuematologist… I'm not having any luck with them… I just keep getting worse… at this rate I will be in a wheelchair soon. 🙁  

[lynnie_sydney]

Hello Dee

If you care to read my testimonial on this site, you may find a good deal of commonality. I was diagnosed with Palindromic, have been on AP for over 4 years. My Mother (in UK) is on methotrexate and pred. Our experiences are like night and day. Good luck to you, there are other ways to deal very effectively with this that dont involve the hard hitter drugs…….but guess you know that, cos you're here. Start educating yourself right away…….it's the start of becoming your own wellbeing case manager.

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)

[Ddubya]

Lynnie,

  Thanks so much for your reply… I read your testimony.. you are right.. there is a great deal of commonality in our symptoms.  I'm still pretty confused, but it's easier to handle that,  when you feel there is some hope…  I have to say I have been feeling as if there was none. 

 I'm in the process of finding another doctor.. one that will be willing to let me try AP… it's definately worth a shot.. and it's my body.. I would like to have a say in my treatment.  Thanks again!

[Susan LymeRA]

Hi Dbubya,

I'm sorry to have to welcome you to our club, but happy our club is here for you.

Have you considered Lyme disease?  Tickborne illness has more bacterias involved than just lyme and you could have any one of them which can be the source of your pain.    Bloodtest are notoriously faulty at finding lyme and a negative test should not stop you from pursuing this possible cause.

Check out http://www.lymenet.org.  This gives information on lyme and coinfections.  You also can find a lyme literate doctor there.  (LLMD)  An LLMD takes lyme way more seriously than the general medical field.  If you are anywhere near D.C., feel free to privately e-mail me and I will give you the name of a few I know including my own doctor who is LLMD and rheumatologist. 

While lyme is in my mix, it is not the only microbe I have.  I also have Babesia WA-1, mycoplasmas, chlamydia pneumoniae, H. Pylori.

Please check out my Leaky Gut and the Altered Immunity post.   Yale studies reveal 70% of our immune system is in our gut.  More and more doctors are realizing a damaged gut is at the root of most illnesses.

Hopefully you can find answers to your illness quickly.  I strongly recommend medical doctors who practice integrative medicine.  They look for causes rather than just medicating.

Susan 

 

 

 

[Ddubya]

Thanks Susan!  I appreciate your response! 🙂

It's interesting you mention Lyme disease.. I have a friend who has that.. and her daughter as well (who it took years to get properly diagnosed) she has told me many times she thinks I have Lyme.  I did get two tick bites (deer ticks) in 99' while I was hiking in TN.. of all places they were in my belly button.. how gross! lol!  And because of the location it was hard to get them out.. I ended up not getting one out completely and had to have my husband do minor surgery on me a day later to retrieve the head. 

I told my GP about it when I started having problems with my feet… and I was also having this weird thing with my heart.. throwing PVC's…  he did a Lyme titer (which I know is absoutely worthless this late in the game)  I told my Rhuem. about the ticks as well..  I thought he was going to test for it.. since I voiced my concerns.  Imagine finding out.. he didn't.  I'm in the process of finding another Rhuematologist.. and when I do.. I won't stop until they test for Lyme. 

Thanks for the links by the way..  I will most definately will check them out. 😉

On a side note.. I got the book “The New Arthritis Breakthrough”  If I had had the time (but didn't) I would've read it from cover to cover! I did manage to finish it in 2 days though…. I could hardly put it down.. how VERY interesting!!

[Susan LymeRA]

D,

I hear you about the doctors and their apathy for lyme disease.  It is soooo bizarre.

In May 07, I was bit again and this time I saved the tick.  It wasn't the typical deer tick, much larger.  Within 48 hrs, I was so sick.  All my RA symptoms came back with a vengence.

I ran to my local internist.  He did not want to test the tick, nor test me for lyme.  He did find I had 101 degree fever and elevated white blood cells.  This following the tickbite and he didn't suspect lyme?  He started saying something like “If we lived in Boston….”  I interrupted him (kind of rudely) and said “You mean I can't even get 2 weeks of doxycycline?”  “We do have lyme disease in the Roanoke Valley, you know!”  He agreed we do and he prescribed the doxy.  Nothing else.

If you don't know Roanoke, VA, we sit between two national forests and it is never a matter of “if” you will hit a deer with your car.  It is “when”.  How can the doctors think lyme is not prevalent?

So, I went to a rheumatologist near D.C. who believes in infectious causes to RA.  She tested and found the bugs I listed earlier.  I am so tempted to take the bloodtest results to the internist and rub them in his face.  Hee-Hee!!!  A girl can dream, right?

With your history, lyme is a high suspect.  Find a lyme literate doctor.  I am sure your friend knows of one.

Susan

 

[Maz]

Hi D,

You might find this recent discussion thread of interest for your PRA symptoms and possible connection to Lyme Disease:

http://www.rbfbb.org/view_topic.php?id=321&forum_id=1&jump_to=2447#p2447

Also, for anyone following the status of the recently proposed Lyme Bill, the IDSA is doing its utmost to quash it – this is a PDF document:

http://www.idsociety.org/WorkArea/showcontent.aspx?id=10818

Here is the Lyme Disease Association's rebuttal letter (Word document) to Congress:

http://lymediseaseassociation.org/SenateLetter2008.doc

As you will see from these two heated letters to Senator Kennedy about the proposed Lyme Bill, the controversy continues unabated and will take govt intevention to turn things around in favor of chronic Lyme patients at this point.

Peace, Maz

[Ddubya]

Susan,

Thank you!  I'm glad to hear you found a good rhuematologist near DC. 🙂  I know where Roanoke Valley is.. imagine a doc not thinking there could be Lyme disease in that area?  Too bad instead of hitting deer with your cars… you couldn't be running down some of those apathetic doctors. Hahaha!  Just kidding… that doesn't sound very nice.. does it? lol!

 

Maz,

Thank you for the link to the discussion thread… that was most interesting!  I also read the letters to Senator Kennedy.  My goodness the one from the IDSA got me riled up!!  I can't believe they don't think people suffer from Chronic Lyme disease!!  I'm frustrated beyond words!!!!

[Maz]

[user=306]Ddubya[/user] wrote:

Maz,

Thank you for the link to the discussion thread… that was most interesting!  I also read the letters to Senator Kennedy.  My goodness the one from the IDSA got me riled up!!  I can't believe they don't think people suffer from Chronic Lyme disease!!  I'm frustrated beyond words!!!!

Hi D,

I understand your frustration and feel it, too. I think we all feel it to some extent here, as did Dr Brown, who worked so hard and did so much in an attempt to try to uncover the infectious cause of rheumatoid disease. Although, somehow he managed to keep his focus on his work and not on the naysayers.

There is so much misinformation being purveyed by the IDSA that the CT Attorney General Blumenthal is currently pursuing an anti-trust violation action against the authors of the CDC Guidelines for the Diagnosis and Treatment of Lyme Disease who work under the auspices of the IDSA. He is doing this because some of these same authors have blatant 'conflicts of interest'…a couple of whom are supposedly involved in the development of a Lyme vaccine of some sort. 😯

The IDSA is basically an old chronies club and, to add insult to injury, they published an article in the New England Journal of Medicine damning chronic Lyme in October, which most physicians read and take as their gold standard. However, they made a big boo-boo when they also cited a study in this article that was published in the Journal of Neurology that also denied the existence of chronic Lyme, because some of these same guys actually helped to author that piece, too, and it was in no way a neutral reference article! 

It's really a ridiculous situation, but there are some very tireless, altruistic people out there who aren't letting this rest and will pursue it to the bitter end, like Pat Smith who wrote the rebuttal letter above. In the meantime, very sick patients have to protect our Lyme Literate docs who are being picked off, one by one, and are being lynched for their sincere belief in their chronically ill patients and treating with longterm antibiotics….bearing in mind that the dreaded mycoplasma of which we are all familiar here is also a well-known co-infection of Lyme Disease.

Fortunately, AP docs no longer have to face this ridicule, as Minocycline is now listed by the American College of Rheumatology as an approved off-label DMARD for RA (for its anti-inflammatory properties only). However, IV Clindy and combination antibiotic therapies have not been “approved.” As such, AP docs who offer these therapies, believing in an infectious cause for our diseases, could potentially bear some element of risk, too.  In this regard, there are some mirrors with the so-called, “Lyme Wars” that are worth watching by all APers. The way all this unfolds for Lymies – with, hopefully, the universal recognition of chronic Lyme – could, in the long run, potentially impact treatment options for us all.

Peace, Maz

[Patti D]

Maz,

I am curious as I do not have the luxury of a LLMD or APMD. I don't even know if we have any in Wisconsin. What are the long term antibiotics they use for chronic lyme? Are they doxycycline? Also what does a lyme literate doctor do that makes him lyme literate?

To be honest, my vet was more “lyme literate” than the original 5 doctors who treated me. He spent over a half hour with me telling me about our lyme issue in my immediate neighborhood. He had treated over 260 dogs & cats in one month last May, the same time I got sick. My family doctor told me they had only treated 4 adults for lyme at the same time as me but 2 of the 4 lived within 1 block to 1 mile of my house. We have a huge herd of deer, over 200 that our county officials hire sharp shooters to thin the herd as there are so many car/deer accidents.

Had I known that my symptoms could still be there long after I stopped the 1 month of doxycycline I think I would'nt have had such a difficult time trying to find my other treatment options. But I am not looking back. I don't want to go there as I feel so much better and as always grateful for this website. Keep us informed. It is sure good to see someone coming to the front of the lyme debate.

Happy days!

Patti D. 

[Maz]

[user=287]Patti D LD 5/07, RA 12/07[/user] wrote:

I am curious as I do not have the luxury of a LLMD or APMD. I don't even know if we have any in Wisconsin. What are the long term antibiotics they use for chronic lyme? Are they doxycycline? Also what does a lyme literate doctor do that makes him lyme literate?

 

Hi Patti,

If you're looking for a Lyme Literate physican, the lymediseaseassociation.org website has a physican referral database that can be accessed on their site. After registering at the site, you get a confirmation email and then they allow you access to the list two or three times a month. I think this is to stop potential misuse.

Basically, a Lyme Literate physician is one who has researched Lyme Disease as a specialty and is aware of its chronic state and the need to treat it. It could be your local GP, ND, Holistic doctor, Integrative Medicine physician or even a Rheumy, and they would generally be affiliated with ILADs.

My Lyme guy is an internal medicine doctor whose practice is solely dedicated to the treatment of Lyme patients. These doctors know that Lyme can become chronic if the disease isn't identified early and treated properly, being fully aware the import of treating a patient based on history and presentation of clinical symptoms, which far outweighs the relevance of the inadequate standard testing methods currently available. They are also aware of the possible coinfections that can be passed in addition to Lyme Disease that may require other medication. For instance, babesia is a protozoa and would require anti-protozoal medication such as flagyl. They are also aware that the Lyme spirochete is a pleomorphic, stealth-like organism that has the ability to morph into different forms – spirochete, spheroblast and dormant cyst – and that these different forms may also require different medications. For instance, I was put on plaquenil, which is a Lyme cyst-buster. As a general rule, they will not treat an infected person with anything immunosuppressive, like prednisone, as these only allow proliferation of the organism and make the patient sicker. And, they are fully conversant in the need to change up the abx on a regular basis in order to 'trick' the morphing organism in order to target it at its different life stages. Various combinations of treatments will be used alone or simulataneously. For instance, one combo I was put on was tetracycline, clarythromycin and plaquenil, which are used in quite high doses. Any number of oral abx may be used, as well as Diflucan, Bicillin IM shots, IV ceftriaxone or rocephin. LLMDs have a full artillery that they use to combat chronic Lyme and aren't afraid to use them if necessary. However, the preferred protocol would vary between patients according to their symptoms, degree of severity, suspected length of disease, etc. Also, not forgetting that individual treatment philosophies may vary between between LLMDs who may prefer mainstream to naturopathic methods, for instance, or certain abx treatment options over others.

Maybe this is more than you wanted to know? 😉 Sorry…I get a bit carried away sometimes. LOL

Peace, Maz

A non-lyme literate physician would be one who isn't into any of the above, probably has no clue about anything other than the standard CDC guidelines for the treatment of Lyme…if that. Many doctors don't even acknowledge the existence of Lyme in their state, although every state in the contiguous US has now had reported cases of Lyme Disease.

[Ddubya]

Thanks Maz! 🙂

 I firmly believe that Lyme disease can make a person chronically ill, as I mentioned before.. I have a friend who's daughter suffered with Lyme disease for years.  They lived in New Jersey.. and my friend knew something was wrong with her daughter.. and she knew what it was, but no one would listen to her.  She became very pro-active in trying to find a  Lyme Literate physican.. and fortunately she was able to find one, but that was after years of banging her head against too many walls to count.  Her daugter suffered quite a bit before she was finally treated.. and was on antibiotics for years…. and in those years she still suffered with joint pain and other symptoms.  I can't believe there are doctors out there who don't believe Lyme disease can make one chronically ill.. sigh.. I get so frustrated with doctors sometimes!!!  I have to say I don't trust them much.  I know there are good doctors out there.. doctors who really care about their patients… I just think they are few and far between.. and that's really sad.

I have an update on things.  I have scheduled an appointment with another rhuematologist… unless there is a cancellation I will have a two month wait though :(.   I did some serious checking and found some patients who see this woman.. they seem to really like her.. they say she is very caring.  I'm not getting my hopes up though… but, at least this doc isn't 70 miles away.  I am still going to try the AP therapy… I don't know if this doctor will be willing to try it, but if she isn't I will find someone who will.  I'm pretty sure my family doctor would have given it a try, but he's become so unavailable lately…. which is a real bummer.. I know he would've been very open minded to trying AP therapy.  I will just have to find someone else around here and if I can't.. I got the name of a good AP doc in Ohio..  she's about 3 and half hours from me though, but if I have to go that far..  I will!  I am mainly going to this new rhuematologist  to try and get a diagnosis, because I still don't know what's wrong with me.. my last rhuematologist was soooo contradictory about my condition.. I am more confused than ever!!  I will be adamant about being tested for Lyme disease this time.. you can bet your bottom dollar on that!  I'm tired of being jerked around!!

[Maz]

[user=306]Ddubya[/user] wrote:

I will be adamant about being tested for Lyme disease this time.. you can bet your bottom dollar on that!  I'm tired of being jerked around!!

Hi D….thanks for your post and so sorry to hear about your friend's daughter with chronic Lyme. I hope after all she's been through that she's finally well again. It truly is heartrending to hear some of the stories about patients who can't get the help they need and choose. I can't even begin to contemplate in every case that “all doctors” are uncaring, because they must have originally gone into the profession with the sincere desire to help people. I think the main problem is that it just takes a very long time for an existing medical paradigm to evolve its views. My doc once said it can take several generations of doctors before a new way of treating some disease is recognized and to become mainstream. Well, there was Dr Brown's generation, then the generation that came after him…let's hope the latest generation of doctors will be a lot more open-minded to infectious causes for rheumatoid diseases. Does seem that a number of people say the “younger ones” seem to at least still be willing to learn…or teachable.

As regards to the Lyme testing….it's worth bearing in mind that the standard ELISA and Western Blot tests are notoriously inaccurate, producing a good percentage of false negatives. It's partly due to the poor sensitivity of the test, the ability of Bb to morph and hide and also because the IDSA guidelines for interpreting results are so restrictive. Many LLMDs now use either a lab in CA, called IGeneX (http://www.igenex.com) or Central Florida Research labs (http://www.centralfloridaresearch.com). Even then, most LLMDs will treat based on clinical presentation and history (which you have with your past tick exposure) and the lab results are just considered a bonus, if they come back positive. I tested equivocal on the standard tests and my PCP said it was proof I didn't have Lyme….however, I tested positive on IGeneX testing. Then there are the possible coinfections to consider, as well, which are rarely, if ever tested by the non-Lyme Literate docs.

In any case, it's fantastic you're being so proactive about this and have found this site!  You rock, D!  :dude:

Peace, Maz

[Ddubya]

Thanks so much for the info Maz.. sorry to take so long getting back here.  I've felt pretty badly lately.. I seem to be in a flare at the moment.  I heard February and May are bad months for people with arthritis.. I don't know if that's true or not… come to think of it.. I felt pretty bad in February though.. maybe there's something to that. 😉

[Author]

Posts