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I spent my entire life living in small town, heavily forested, central Massachusetts. I can’t even describe how many ticks I’ve had on me over the years. I was tested for Lyme even by Dr. F., and it came back negative. I am now at the point where I really don’t believe those tests. I need info on the best lab to get tested from, the best LLMD and AP docs to consult with on this matter.
Preferably LLMD and AP docs in southern California or New England(Connecticut, Massachusetts, Maine, Vermont, Rhode Island, New Hampshire).
Someone told me Dr. F. doesn’t believe Lyme cam cause SD. Well I need to stop wasting time and figure out the steps to get tested.
@JustDiagnosedChris wrote:
I spent my entire life living in small town, heavily forested, central Massachusetts. I can’t even describe how many ticks I’ve had on me over the years. I was tested for Lyme even by Dr. F., and it came back negative. I am now at the point where I really don’t believe those tests. I need info on the best lab to get tested from, the best LLMD and AP docs to consult with on this matter.
Preferably LLMD and AP docs in southern California or New England(Connecticut, Massachusetts, Maine, Vermont, Rhode Island, New Hampshire).
Someone told me Dr. F. doesn’t believe Lyme cam cause SD. Well I need to stop wasting time and figure out the steps to get tested.
There is a saying, “If it looks like a duck and quacks like a duck, then it’s probably a duck.” If a person has a history of multiple tick bites and has lived in a Lyme endemic region, then it just makes sense to look into this possibility. Even the early “leading” researchers knew that Lyme caused sclerodematous-like skin lesions. Doesn’t this study from Steere, etal, in 1988, look like MCTD with the similarities to scleroderma, lupus, polymyositis and dermatomyositis all mentioned? :
http://www.ncbi.nlm.nih.gov/pubmed/2847622
It’s ironic that this Yale researcher (and the guy the CT health dept called out to Lyme, CT, to investigate the large cluster of JRA and other rheumatic cases in the mid-70s), a rheumy, is now one of the leading anti-chronic Lyme denialists! 🙄
Dr. F. is a great doc – one of the few rheumies who adheres to infectious theory for rheumatic diseases and who can diagnose and treat in an individualized way. Lyme, however, requires specialized training and Dr. F. isn’t a part of the ILADs organization that provides that training. If Dr. F. didn’t use IGeneX labs to test you for Lyme, then if you would like further testing, would suggest you call up this lab for one of their testing kits to be mailed to you. You can then ask a local GP if they will sign off on the labs for you. A basic western blot is usually enough to get started with and costs around $200 (test #s 188 and 189). Quest or Labcorp will draw the blood and pack it in the kit for a nominal fee as it’s not going through their lab (unless the GP or other doc is able to do it for you in their office). The recommendation by the lab is to get the blood drawn early in the week and mail it same day. Results take about 2 to 3 weeks to go back to the ordering doc and we have some links to help with interpreting the results that come in 2 parts (IgM and IgG).
It’s heartening to see researchers, like Dr. Stephen E. Malawista, at NYU School of Medicine, who has dedicated his life to studying Lyme and the relationship of this chronic infection (and others) to rheumatic diseases:
http://www.fasebj.org/content/28/2/521.full.pdf
There are multiple tickborne coinfections that can be passed by ticks that will sometimes require separate attention with various antibiotics, but most people just like to get the basic western blot run first as this can be enough to help them make the decision to see a LLMD. Costs for LLMDs are usually out-of-pocket (because insurance resists covering non standard of care long-term treatments with abx) and initial LLMD work-ups can be costly, as a result. CA has a healthy list of experienced LLMDs, so if you’d like me to send you this list, I’d be happy to do so. It doesn’t mean you’d have to drop Dr. F. Some people build teams of docs and a number see both AP docs and LLMDs. In fact, it’s a good idea to keep a rheumy like Dr. F. on board to ensure continued monitoring of the rheumatic disease.
To get a better idea of what you’re looking for in a LLMD, I’ll PM you with my phone number and would be happy to put our heads together to consider the doc options.
Maybe you will get my message –hope for your sake you do –when I got sick about 16 years ago -I messed around with local rheumatologists who got nowhere –my wife who is a researcher thoroughly looked into doctors and a approaches with only one thing in mind –which doctor got people better —PERIOD –we didnt care how why or when I got diffuse scleroderma –{I really had a bad case }–we totally dismissed all the horsesh-t and only focused on who got people better —at that time DR T. in the east [Harvard } got publicity about putting 6 out of 11 people into remission —DR S in Iowa was achieving success using Dr Browns approach And Dr. F in Calif got some publicity about treating and putting into remission a playboy bunny by the name of Tyln John —they had differing theories and different approaches -the lynchpin was minocin –I used DR T at Harvard –not only did he not buy into lyme at the time –he didnt even buy into an infectious theory -he leaned toward the environment -but the most important thing was -HE GOT PEOPLE BETTER I know scores of people who got better using DR T. who is now retired . –I know scores of people who used Dr S and got better and I know scores of people who used Dr. F who got better —-you are only on minocycline for 6 months and it appears you are impatient with Dr F. –it took me 6-8 months for just the fatigue to lift !!!!-The people who I know {including myself } who got better had one thing in common –A plan –another doctor to care for all the other symptoms that come with scleroderma –Dr T treated the over all disease -my internist took care of all the other symptoms –They had focus and they had patience and confidence in their doctor —This is a pattern of winners who defeated a deadly disease —Along the way and being around here for almost 16 years –I can see the patterns of winners and I unfortunately also see patterns of losers and believe me with diffuse scleroderma losing is not an option !!!!!!Hope you consider my message —
Consider this message my New Years gift to you –
richieRichie,
I agree with your approach in asking which doctor got people better. However, I do have one question. How long was it from the start of your symptoms before you were diagnosed with SD? Was it a local doctor that diagnosed you with SD before you ended up with Dr. T?
Hi Chris,
@JustDiagnosedChris wrote:I was tested for Lyme even by Dr. F., and it came back negative. I am now at the point where I really don’t believe those tests.
Request a copy of the test results. That way, you can see what tests were performed, what lab performed them, and what the actual results were.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi It took about 6 months or so until I got diagnosed for sure by Dr T. –The local rheumy was unable to come to a definite dx –all my blood tests were negative -First visit Dr T took one look and dx’d diffuse scleroderma –it was a bit easier by then cause by then my Raynauds was full blown –my hand skin was tightened so much that I started having contractures and I had terrible fatigue —the point I was trying to make as I was being treated by him other symptoms came out while still others subsided –once the fatigue lifted in about 6-8 months -I knew I was on the right track –me and my wife also decided that as effective DR T. was I needed my internist to help with the other problems –so I more or less laid things out for them about this arrangement and Dr T. had no problem at all with it –For example -my internist treated the Raynauds and reflux which was due to the scleroderma —within two months of starting meds for them –they improved quite a bit –Everyone has a different approach and different outlook —I more or less used a traditional medical approach which was to treat things as symptoms arose rather than a holistic approach —it worked for me just as it has worked for folks who uses a holistic approach –but it is a long term treatment and instant results very rarely occur however its approached
richie@richie wrote:
Maybe you will get my message –hope for your sake you do –when I got sick about 16 years ago -I messed around with local rheumatologists who got nowhere –my wife who is a researcher thoroughly looked into doctors and a approaches with only one thing in mind –which doctor got people better —PERIOD –we didnt care how why or when I got diffuse scleroderma –{I really had a bad case }–we totally dismissed all the horsesh-t and only focused on who got people better —at that time DR T. in the east [Harvard } got publicity about putting 6 out of 11 people into remission —DR S in Iowa was achieving success using Dr Browns approach And Dr. F in Calif got some publicity about treating and putting into remission a playboy bunny by the name of Tyln John —they had differing theories and different approaches -the lynchpin was minocin –I used DR T at Harvard –not only did he not buy into lyme at the time –he didnt even buy into an infectious theory -he leaned toward the environment -but the most important thing was -HE GOT PEOPLE BETTER I know scores of people who got better using DR T. who is now retired . –I know scores of people who used Dr S and got better and I know scores of people who used Dr. F who got better —-you are only on minocycline for 6 months and it appears you are impatient with Dr F. –it took me 6-8 months for just the fatigue to lift !!!!-The people who I know {including myself } who got better had one thing in common –A plan –another doctor to care for all the other symptoms that come with scleroderma –Dr T treated the over all disease -my internist took care of all the other symptoms –They had focus and they had patience and confidence in their doctor —This is a pattern of winners who defeated a deadly disease —Along the way and being around here for almost 16 years –I can see the patterns of winners and I unfortunately also see patterns of losers and believe me with diffuse scleroderma losing is not an option !!!!!!Hope you consider my message —
Consider this message my New Years gift to you –
richieRichie has brought up some important points!
Also, I noticed Chris is taking Mino MWF. Aren’t SD patients usually on a daily dosing schedule?
Good point –it seems most folks with SD have a better tolerance for minocycline with much less herxing etc —the norm for SD is 200– mg daily every day —
RichieYou are right to investigate lyme further. To not do so could result in worsening of symptoms and more problems down the road. Your best bet is to meet with a lyme literate doctor and get properly tested. Finding the right one can be a challenge. While it is important for the doctor to be lyme literate it is also important that they look beyond lyme as well. I went down thisroad myself several yrs ago. I became ill with severe bilateral hip bursitis several yrs ago following a tick bite. I saw my GP several times overcthe span of a few months and expressed my concern about lyme butvit was dismissed. My symptoms worsened to the point I could hardly walk. In thatvtime at one of my visits my doctorcrecommended a flu shot as well as a tetanus. Very big mistake as thevtoll they took on my immune system was enormous. I pleaded for help and was finally tested for lyme with the ELISA. It came back equivocal. My doctor reluctantly prescribed doxicycline. Within 48 hrs I was pain free. I was overjoyed. Several dys laterthepain was back worse than before. I knewthen I was herxing and needed to find a lyme literate physician. I was able to get in to see one and after a battery of tests I wastold that not only did I have lyme but also mycoplasma and rocky mountain spotted fever. I also showed high numbers for epstein barr. Over the course ofthe next year I took many oral antibiotics. I did see some improvement but still had some issues. While I felt lyme was being addressed nothing else was…I eventually left the practiceand transferred to an integrative physician who whilelyme literate looked beyond lyme. Addressing inflammation, food allergies, thyroid issues, adrenals etc. The way she explained it was that lyme may have ignited the fire setting off other issues. To keep going afterlyme would serve as no purposeas shecfeltvit had been trested enough andto continue to do so would cause more issues. What wasimportantwas to now address all the problems it caused.
I would encourage you to connect with this group
http://flash.lymenet.org/scripts/ultimatebb.cgimay have ignited
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