The strangest of my many symptoms is these thin, white, lines that have appeared on my hips/buttox. They look like stretch marks that showed up for no reason. I'm 27, and have no reason to have any stretch marks...no pregnancies or weight changes. Maybe this is left-field, but just thought it couldn't hurt to ask.
By the way, my other symptoms include extremely sensitive, stiff, often swollen, fingers, palms, wrists, and bottoms-of-feet which are downright painful in the morning. Also have pain in & around achilles tendon, knees, elbows, eyelids, and jaw. Also dizziness resulting anxiety/panic attacks. My reynaud's syndrome has gotten worse. I get hot at night, when i used to be chronically cold.
I had 20-50 heart palpatations a day (felt like my heart was flip-flopping around in my chest) for a month about a year ago, now they've calmed down to about a once a week average. (Not sure if this is related.)
I hike a lot, but no memory of a tick bite. I've come up negative on Qwest's ELISA and Western Blot. I've just finished 3 weeks of doxy with symptoms getting worse, except the diziness which went away with doxy. The only thing proven abnormal is an elevated sed rate so far.
So, I decided to post all these symptoms because it's helped me so much to read about other people who have had similar issues to my own. I've been healthy, active, and generally happy, & positive my whole life. I'm still happy and fulfilled, just freaked out by this body I now have, which doesn't resemble the one I had just a few months ago.
I realize this might not be Lyme, but I've been researching like crazy, and nothing seems to quite fit. My Kaiser Permanente doctors are no help in coming up with ideas!
Any and all reactions are more than welcome! Feel like i'm going nuts here....
[This message has been edited by TreeLoafer (edited 12 October 2004).]
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).]
I can't help you much with your questions I am pretty new at this but thanks for mentioning the stretch marks I would have never connected the two as being related. I will mention them to my doctor when I see him again!
Welcome to Lymenet you came to a great place with lots of people who are able to help you and guide you in the right direction.
Stacie
Here are the promised links of pictures of Bartonella.
1. Pictures of stretch marks - probably chronic bartonella.
The above pictures originated from this Lymenet Link:
http://flash.lymenet.org/ubb/Forum1/HTML/026071.html
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Here is a link below with pictures of acute bartonella.
Go to pages 23 - 25.
This article has comprehensive information including symptoms and antibiotic guide. It's about 29 pages so you may want to print & read at leisure.
http://www.emedicine.com/derm/topic69.htm
Take Care,
Jan
[This message has been edited by RECIPEGIRL (edited 13 October 2004).]
dr. jones says it's pretty typical of bart..can be purple/red, or clear, like ours were...also can be on breast/chest area
Lisa
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
How to Search Courtesy of Danq
LymeNet Links for New Members
Newbie's Lingo
Lyme Disease Audio Network
Dr. Joseph J. Burrascano's Treatment Guidelines
CDC Website on Lyme Disease
International Lyme and Associated Disease Society
Lyme Disease Symptoms
Rashes
Co-IinfectionsThanx M
Rose's 15 Facts for Newcomers
Making the Most of Your LLMD Visit
Camp A and Camp B, The Lyme Disease Contoversy
2nd Version Camp A Camp B
Why You Can't Trust Medical Journals Anymore
Something to share with friends and family members But You LOOK Good!
Labs
MDL
Igenex Labs
Western Blot Info
FDA It is important that clinicians understand the limitations of these tests
Explaining Borreliosis (Lyme) Western Blot Tests
Explanation of Western Blot Bands
Igenex Labs on the Western Blot
Melissa Kaplan's Lyme Website Explains Western Blot
Dr. C Explains Western Blot
- Not present
+ Low
++ Medium
+++ High
+/- Equivocal = indeterminate (there, but not as intense as Low)
Drug Interactions and Other Drug Info
Drug Digest
American Medical Women's Association Tiscali Reference Encyclopedia
Herxing
What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction
Check Diet Link Atkins Diet
Sexually Transmitted ???
Transmitted Through Sex?
Sex Question-Serious-Adult Content
Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections
Good Site Canadian Lyme Disease Association
FDA on Lyme Testing
Legal Help
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. )
See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH
Marnies......... Ten Points Regarding Mg and Lyme Disease
Before this, I had not even heard of bartonella, and had been ignoring co-infections. Now I've found multiple posts of people experiencing stretch marks, too. How strange!!
I'd be interested to know if anyone has experienced white stretch marks, in particular. lla2, it sounds like that might be what your family had..."clear" marks.
Thanks for the goodies, treepatrol! It's VERY helpful to have some of those reputable sites to show doctors.
MUCHAS GRACIAS!!! It makes me feel better to know I have help here...
Thanks for taking time to reply.
I'm so glad the board can help.
Also, I noticed you're from Virginia. I have just read that Rocky Mountain Spotted Fever (RMSF) has been found there.
Just yesterday, there were several posts on RMSF. Like 2 or three posts on the same day-------which was quite strange.
Anyway, Tincup wrote alot in her reply about RMSF. She also said that you don't have to have an acute case for it to be active in your body.
I always thought the big clue was a red rash on hands and body, but she said that's not necessarily the case.
I have no clue if you have RMSF, so this is simply a heads up for you. I just found it very interesting that she specifically mentioned RMSF is in Virginia.
When you have a chance, you might want to glance at them.
Best Wishes,
Jan
Now, I'm not going to completely rule out co-infections, but this did make me feel much better. One of them even showed me that she had a couple "stretch marks," too.