Hi Treeloafer,Welcome to Lymenet. I hope we can help you.
Sorry you're going through a rough time without any real answers.
You will find those important answers and you will get better because you're taking charge of your health.
I'm so glad you are.
There are others on the board who can easily provide more in-depth answers for you. They'll probably visit in the morning.
Before I forget, don't let anyone prescribe steroids for you. This will depress your immune system severely & set treatment back many months.
Also, if you develop any rashes anytime during treatment, take a picture with a coin beside it for size comparison. Keep those pictures forever.
When I read your story about the new appearance of stretch marks, especially on the hips/buttocks, it sounds like it could be Bartonella.
Be reassured, only a physician can properly diagnose you. This is merely a suggestion you might want to research.
Bartonella is a tick borne co-infection.
Some folks state emphatically that the stretch marks have to be silver or purple, but I don't think all cases are textbook cases. No two patients have identical symptoms.
There are different strains of Bartonella also, so naturally that would account for the differences in symptoms.
If you have Bartonella, you most likely have Lyme and need to be checked for other co-infections such as Babesia and Erlichiosis.
For many on the board their Lyme disease developed rather insidiously bringing along the other tick borne co-infections.
The symptoms for Lyme & the co-infections overlap so it's difficult to determine what's causing a specific symptom.
As you probably already know, Lyme Disease (LD) is a diagnosis based on symptoms. It's a clinical diagnosis.
If you can find a Lyme Literate Medical Doctor he will probably run Western Blot IgM and IgG tests from a specialty lab like IGenex in California. (Cost $180)
Because there are many variables involved in Lyme testing, no test can prove you have or don't have Lyme 100% of the time.
The tests for the co-infections are not 100% reliable either.
You can have a raging infection and end up with a negative test. Some of the sickest patients have negative tests.
If you have a good LLMD, he will recognize the symptoms and some will opt to treat co-infections even if your lab work is negative.
Tick borne co-infections cannot be ignored.
They will halt the progress of your Lyme treatment. Usually the added co-infections make you sicker with a wider array of symptoms than if you simply had Lyme.
Here is a Lymenet link about Bartonella courtesy of the talented Tincup:
http://flash.lymenet.org/ubb/Forum1/HTML/008362.html
Remember, you don't necessarily have to have every symptom. You may have a simmering type of infection just under the radar; a
sub-clinical infection.
Also, here is a link for new members composed by Tincup to provide helpful information:
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html
Perhaps Treepatrol will stop by tomorrow and give you the handy page of links for members.
You can quickly review all his topics at a glance. It will make researching Lyme much easier for you.
Also, here is a link for an article about Bartonella I think you'll find interesting: (scroll down to, "Hope for Those with Lyme")
http://www.geocities.com/ldbullseye/bullseye.html
You deserve the best of treatment, so I hope you will waste no time in trying to locate an LLMD near you.
At least start checking into it now.
Click on the flash discussion in left margin and then click on SEEKING DOCTOR. You will need to post a new topic & tell them what area of the country you're located in & where you are willing to travel.
Someone will e-mail you privately with an LLMDs name & information.
At least try to go for that initial evaluation to get a correct diagnosis and treatment protocol.
Or, click on Lyme Disease Association, Inc. at left margin & they have a physician referral system.
You can also click on Support Groups & see if there is one close to you. Contact their leader for a good recommendation.
Hope you can call soon as LLMDs are sometimes hard to find & it takes a while to get an appointment.
The longer you wait to be evaluated, the longer it takes to get well.
Remember, don't worry about the Quest tests. An LLMD will run his own tests.
Here are 19 Reasons for a negative test:
http://flash.lymenet.org/ubb/Forum1/HTML/001744.html
Sorry to say, but your insurance is much happier with a negative Quest test than a positive Igenex test.
Believe it or not, it keeps costs down for them if they can say you don't have Lyme.
It clearly states on these tests results that the diagnosis or exclusion of Lyme cannot be made according to CDC criteria.
The CDC is for surveillance purposes only and not to be used to withhold treatment from a clearly symptomatic patient.
Even the FDA warns doctors about making that mistake.
Lyme disease is the new great imitator so doctors frequently get sidetracked with only secondary diagnosis such as depression or TMJ.
Best of luck in your quest.
Keep asking questions so we'll know how to help you.
To respond to anyone's reply, just hit the
"Submit Reply" button at the bottom of the page.
Here are two of my favorite links:
1. Dr. B.'s Guidelines for Treatment which contains a symptom list. You'll probably want to print out this entire booklet & refer to it often.
http://www.ilads.org/burrascano_1102.htm
2. Basic Information from ILADS
http://www.ilads.org/basic.htm
I will try & find a photo of bartonella stretch marks for you & post it in the next post.
Remember, Lyme is not what you think it is! Just wish we could educate the physicians of this fact.
Best Wishes,
Jan
[This message has been edited by RECIPEGIRL (edited 13 October 2004).]
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