Chronic Knee Pain- Rhuematologist Next??

[Audrey_M]

I'd like to hear from anyone who has had joint damage from Lyme Disease and what experience you have had, if any, with rheumatologists.

My son, who is now 21 years old, has had Lyme Disease 4 different times that we know of, the first time being when he was 8 years old. He was probably bitten in May of 1997, but it was not until March of 1998 that he was diagnosed when his left knee began swelling horribly and he was hobbled in less than 24 hours. A 30 day course of Amoxycillin seemed to do the trick.

In December 2006, he complained that his knee was hurting and then went onto say that both knees had been bothering him for a couple of months. Bells and whistles went off in my head (we live in East Lyme) thinking he might have Lyme Disease again. Sure enough, the Western Blot came back positive. This time, it was not an easy cure and he went through 3 rounds of oral abx before going on IV abx. I believe that he must have had Lyme for quite some time, being infected here in CT, but spending time in Antigua and then Colorado before he started feeling symptoms.

He has complained on a regular basis about knee pain and is taking too many NSAIDs. I have taken him to several competent orthopedic specialists, who say that there is nothing wrong with his knees, based only on physical examination. We've heard patellar syndrome and flat footedness as explanations, with exercises given for strengthening without result.

This summer he was complaining yet again about knee pain and I told him it was time to see a rheumatologist, as he has seen too many experienced orthopedic specialists and will continue to get the same kind of answers.

He is now trying to play Lacrosse and is experiencing a lot of pain in his knees. His coach cannot believe that he has never had x-rays, given his medical history.

His other two infections (August 2008 and August 2009) were caught quickly, as the ticks were actually seen on his body.

For the record, I do not believe in the type of treatment a lot of LLMDs practice and thus would not consider this as an option. My father is a retired analytical research chemist who specialized in antibiotics which does influence my opinions towards the long terms use of antibiotics.

[JackieCalifornia]

Thanks for your kind words!  I was indeed on good behavior that day, wasn't I.  Sometimes ... not so much.

I don't recall Audrey M being around here lately -- those posts being 2 years old now -- but I do remember feeling badly for her that she was trying so hard to do the right thing, but in a situation where there was much strong influence against an ILADS-type approach.

And big points to your own doc for figuring out your own array of infections!  Wow.  Best wishes to you -- let us know how it goes -- sounds like you're on a good path.

[JackieCalifornia]

Glad you are being treated -- it is definitely worth while in my experience!

Keep us posted on how you do, okay?  Best wishes --

[pipergirl614]

I would be cautious about any treatment a rheumatologist would suggest. I I went to a rheumatologist after the vascular surgeon and orthapedic specialist couldn't figure out what was wrong with my ankle, which was swollen and very painful.  She diagnosed RA and prescribed methatraxate, to lower my immune system.  Pow!  After 4 months on that, my knee suddenly swelled to twice its size.  In August I was diagnosed with gout which cleared up the ankle, but tested positive for Lymes.  The arthritis is in both knees and wrists right now and I am pretty crippled up.  

My doctor feels that the Methatraxate suppressed my immune system enough for the Lyme to act up.  Who knows how long I've had it.  

I read somewhere that whatever specialist you see, that's the disease you have.  

My advice is to be very careful of anything that could lower his immune system until Lyme is totally ruled out.

I have no other symptoms of Lyme except the arthritis.  I'm on long term antibiotics (3) and hoping for the best.

[tobywillygal]

Hello Audrey_M and Jackie California,

     I was doing a search for Lyme Disease and swollen knees and came across this post.  I would like to congratulate both of you ladies for speaking to each other in a courteous manner while discussing two completely different views of Lyme Disease and it's treatment.  It's nice to read a back and forth discussion that doesn't turn vicous and nasty.  Audrey_M, i was thinking how difficult it must be for you to be amongst the Lyme Community where 99.9% do not agree with your point of view.  And i very much doubt that you are able to find a LLMD who believes 1 month of abx is enough for your son.  I am curious how your son feels after such a short treatment?  Does he feel as if he has been cured?  What makes you believe he has been bitten 4 times versus he is not relapsing due to insufficient treatment each time?  I hope you don't mind me asking these questions, if you are uncomfortable about answering then pls just ignore them.  Has your son been tested for co-infections?  I'm sure you know most ppl with Lyme also have been infected and need to be separately treated for any co-infection they might be carrying.  I myself have Lyme, Bartonella, Rocky Mountain Spotted Fever and Anaplasma. From my understanding Lyme very closely resembles Syphilis and Babesia resembles Malaria.  Both Syphilis and Malaria are usually not cured if not treated in the early stages and the patients continue to relapse throughout their lives.  You sound like a very reasonable woman and most of all, a concerned mother.  I hope you will consider all information available rather than relying on what your father has told you.  As Jackie said, new information is coming out constantly which could very well change what was previously accepted as being the truth.  As a concerned mother i hope you read the literature from both sides and stay open for new truths for your sons sake.  Good luck!

[Audrey_M]

Jackie:

Thanks for all of the info.

With the one very persistent case of Lyme in 2007, my son was treated with several different types of oral antibiotics and for more than 30 days. He was on Ceftin IV for 6 weeks before having a PICC line infection.

Since that case, he has been tested for Lyme with the Western Blot test and came back with negative results and I agreed with the results based on his overall health and symptoms. There have been other times where he did test positive and there was enough evidence to rely on those test results. I do not believe that the negative test results were false positives, especially in light of the positive results later after known exposure.

The other thing that leads me to believe that the bacteria is no longer in his system is that he has been on courses of antibiotics for Lyme and other bacterial infections over the past several years and did not have a herx reaction like he did with the Lyme that took so long to diagnose. And yes, he did herx very badly.

Yes, Lyme is indeed a very tricky disease. Much more needs to be done in terms of studying the life cycle of the spirochetes and their response to various antibiotics.

We still have to find out what is going on with his knees and why he has so much pain.

Audrey

[JackieCalifornia]

PS

www [dot] jneuroinflammation [dot] com / content / 5 / 1 / 40

If you take the extra spaces out and replace the [dot] indicators with real dots, you will be taken to:

Title:  "Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis"

Judith Miklossy1*, Sandor Kasas2, Anne D Zurn3, Sherman McCall4, Sheng Yu1 and Patrick L McGeer1

Author Affiliations

1 Kinsmen Laboratory of Neurological Research, University of British Columbia, 2255 Wesbrook Mall, Vancouver, B.C. V6T1Z3, Canada

2 Laboratoire de Physique de la Matière Vivante, Ecole Polytechnique Fédérale de Lausanne, 1015 Lausanne, Switzerland and Département de Biologie Cellulaire et de Morphologie, Université de Lausanne, 1005 Lausanne, Switzerland

3 Department of Experimental Surgery, Lausanne University Hospital, CH-1011 Lausanne, Switzerland

4 Pathology Laboratory, U.S. Army Medical Research Institute of Infectious Diseases (USAMRIID), 1425 Porter St., Ft. Detrick, MD 21702-5011, USA


The conclusion of the article is:  "The results indicate that atypical extra- and intracellular pleomorphic and cystic forms of Borrelia burgdorferi and local neuroinflammation occur in the brain in chronic Lyme neuroborreliosis. The persistence of these more resistant spirochete forms, and their intracellular location in neurons and glial cells, may explain the long latent stage and persistence of Borrelia infection. The results also suggest that Borrelia burgdorferi may induce cellular dysfunction and apoptosis. The detection and recognition of atypical, cystic and granular forms in infected tissues is essential for the diagnosis and the treatment as they can occur in the absence of the typical spiral Borrelia form."

Spirochetal B. burgdorferi are first cousins to the spirochetal syphilis bacteria, and one need not look too far in history to appreciate the long lead time and devastating physical and neurological consequences of untreated syphilis.  We as a society are still under the cloud of the Tuskegee experiments in the 1940s, in which treatment was deliberately withheld from those infected with syphilis.  I'll leave the analogy there for now.

[JackieCalifornia]

Audrey,

I certainly understand your concerns for your son's health and well-being.

Joint pain is indeed associated with Lyme.  The first two speciality areas of medicine to bring Lyme to notice among the medical community were rheumatologists (due to joint pain as your note, esp. knees) and infectious disease MDs due to the hallmark circular rash and associated symptoms.  The diagnosis and treatment principles of the Infectious Disease Soc'y of America (IDSA) regarding Lyme are even today based on that early research from several decades ago.

I too have physicians and scientists among my close family and friends, and I understand your rejection of what are viewed by IDSA etc. as quackery and as violation of established IDSA standards of diagnosis and treatment.  I understand how reluctant you probably are to even come to a message board like this.  There are a lot of wild and crazy things posted on boards like this, but also good leads -- one must just be cautious in deciding which are worth following.

Your narrative focuses on your son's knees and multiple infections with Lyme, with multiple treatments, likely (I am guessing) with doxycycline for 2 to 4 weeks each time, following IDSA approaches.

Based on my own experience and that of others I know, I would offer the following for your consideration:

-- The ticks that carry Lyme also often carry other bacterial infections which require separate testing and treatment.  Have your docs made that evaluation?

-- Lyme bacteria have an usually long reproductive cycle compared to the more common types of bacteria, so that the time when they are most susceptible to antibiotics is not every hour or so as with most bacteria, but much longer.  Therefore longer treatment is called for, as is the case also with Hansen's disease (leprosy) and tuberculosis.  I know of a child who was treated for TB here in California wiwtih 18 months of antiobiotics -- that is standard of care, yet nonLLMDs reject that approach for Lyme, without explanation that I have been able to find.

-- Lyme bacteria have the ability to conceal themselves in so-called biofilms, which enable them to evade identification and eradication by antibiotics.

IDSA standards do not appear to take any of the above into account.  I strongly suggest that you read the ILADS treatment recommendations at ILADS [dot] org.

I understand your reluctance to depart from mainstream medicine's approach to Lyme diagnosis and treatment, but medicine continues to evolve, because the natural world continues to evolve.  I remember the senior CDC physician (white coat, stethoscope) announcing on TV in the mid 1980s that there was no need to worry about contracting AIDS if you weren't gay or Haitian.  That was an attempt to quell panic in the populace, but in fact the medical community knew next to nothing about AIDS as an emerging disease.  Mainstream medicine does not know everything -- Mother Nature is not static and never will be.  The 'male model' of medicine assumes otherwise, however, much to our peril.

It's not far back in history to recall the 2005 Nobel prize in medicine, award to Marshall and Warren for discovering that the infective agent in gastric ulcers was not 'stress' but H. pylori.

And let's throw in Ignaz Semmelweis in the 19th century for saving us from childbed fever, by figuring out that doctors were infecting patients by going from one to the next without washing their hands.  Bacteria!  Who knew!

There is always more to know, and rather than reject out of hand 'the type of treament a lot of LLMDs practice' because you do 'not believe' in it, look instead at your son and how long and severely he has suffered.  I encourage you to look into what the LLMDs are up to and make your own determination.  Yes, there are cranks out there, and the IDSA denigrates the ILADS approach by casting doubt on the integrity of the ILADS MDs rather than deal with the science put forth.

Read as much as you can, both on the ILADS website and in medical journals.  As a starting place, I highly recommend Pamela Weintraub's 'Cure Unknown', an unfortunately titled but gripping story by a trained medical journalist about her own family's odyssey through Lyme in Connecticut.  It's in paperback, and I guarantee you it is fascinating.

It has been hard for me not to harangue here, because I know your son is suffering, and therefore you are suffering as well.  Be brave and do not let the sneering of mainstream medicine deter you from making up your own mind.  I went through 20+ MDs before I was diagnosed with Lyme and a co-infection, and it nearly destroyed my life.  I lost precious years with my family because I was too ill to participate in their lives or to be productive in my own.  These are terrible diseases, and the hubris in the medical community is inexcusable.  MDs and scientists pride themselves on objectivity and a dedication to their work, but they are only human, and the human characteristic of pride has taken over the IDSA.  

This will be rectified in time, but not soon enough.  In the meantime, your son is hurting, and it is within your power to seek the true cause and effective treatment.  Lyme is not an easy or sure cure, but it is certain that it will not go away on its own.

You have a valuable resource in your scientist father.  You could collect the recent publications and ask his further opinion.  The Journal of Neuroinflammation has interesting work published.

You would likely not have posted here if you were not ready to take the heretical step of going beyond the IDSA standards.  It is scary to do so, but it is even more scary not to.  What's the saying:  "When going through hell, keep on going."