Lyme and morphea

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:
[email protected]
If you'd like more doctor suggestions, you can email stephanie at: [email protected] 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!

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!!