Lyme and morphea

Does anyone here have lyme and morphea? I am going back to my PCP this week to get a copy of my western blot. I do have morphea and 5 years ago when I got my first biopsy, it came back questionable lyme. When they tested me then, it was negative (just the elisa test). Recently when they tested me, it came back equivocal, which is borderline. Meanwhile, for the past 5 years, I've had fatigue and joint pain. Right now, I am on an antibiotic for a UTI and my joint pain is going away. I always feel better on antibiotics. I've been on them a lot the past 5 years for other things like colitis...... I think my PCP will treat me for lyme though. What's so odd is that I keep having all these other problems on the front burner that demand treatment. Most recently, I've had all these UTI's since august. I've just been sick a lot for the past 5 years is all I can say.

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d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

Hi jeaneac,

Sounds like you are dealing with a long-held Lyme infection. They typically do not show up well on the tests -- particularly the ELISA. Lyme disease does suppress the immune system so your body does not produce the antibodies that the test is set up to detect.

The fact that you feel better on antibiotics is a very good indication that you have Lyme. Lyme can also cause UTI's and things like colitis. You may find that many of your other "front burner" problems will be resolved once the Lyme is dealt with.

Have a look at our "New to Lyme?" thread it will get you up to speed on many of the things you need you to know about Lyme and provide you with plenty of resources.

While your PCP might be willing to treat you for Lyme, I wouldn't recommend it. Treating Lyme is a very tricky business, and a long-held infection even more so. Your PCP will not only not be familiar with the different treatment options, but will most probably be hampered by treatment guidelines set up by the Infectious Disease Society of America and your insurance company.

You would be well-advised to seek the help of a Lyme Literate Doctor. You want to find an International Lyme and Associated Disease Society recommended doctor. They can be found through these channels:
For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
phassan@optonline.net
If you'd like more doctor suggestions, you can email stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You can also post a new thread entitled, "Looking for LLMD in (name your nearest big city or region you are willing to travel)"

Keep us posted!

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Co-Moderator Lyme Disease Forum

Thanks Achievinggrace. I will check into an LLMD and do some more research. I've been in the medical field myself and that can present problems. A little bit of knowledge is a dangerous thing. I like "evidence" but then again I know what I feel like too. I want to get well. I really hate antibiotics though so maybe I'll check into some alternative healing. If I got infected 5 years ago, heaven help me b/c it's been a long time. Is this pretty normal not to get diagnosed until years later?

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d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

Hi Jeanneac!
To answer your last question, yes unfortunately it is very typical for Lyme infections to go undiagnosed for years. It took me literally 36 years from the time of infection with Rock Mountain Spotted Fever & who knows what else to get diagnosis and then another 4 years to find a treatment that I could handle because the infections had gone so long untreated.

Although I think I am one of the more extreme cases, there are a ton of members that have gone 10 - 15 years and even more that have gone for 3 -7 years before actually finding out that it was Lyme Disease and possibly other Tick-borne infections that were the root cause of their symptoms.

We actually have a fair amount of members using alternative healing and getting well! They don't seem to post much, but you can use the search function to find some info about the different natural protocols. Here is a link to a list & descriptions of some of the more popular natural protocols:
www.lymediseaseresource.com/Protocols.html

There are a few others that use Byron Whites' formulas (just google Byron White Formulas), and some that use Naturopath's to heal and just a small handful of people (like me - ) that use Acupuncture and Chinese Medicine.

Have you read through the thread at the top of the forum titled "New to Lyme?...Start here!" yet? If not I would highly encourage you to do so. There is a whole lot of info there and some very informative links!!

I would suggest that you read through Dr. Joseph Burrascano's paper "Advanced Topics in Lyme Disease" (betterhealthguy.com/joomla/images/stories/PDF/lymdxrx2008-october.pdf) and ILADS (International Lyme and Associated Diseases Society) treatment guidelines, which can be found here: www.ilads.org/lyme_disease/treatment_guidelines.html

Of course we are here for you -to help you locate info, answer some questions and just for a shoulder to lean on from time to time should you need it!!

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Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.