posted
My name is Lindsay and I was diagnoised with lyme disease 3 monthes ago. My story is quite complicated: My doctor believes that I was bit by a tick as a child and it never became active b/c it came through my body in different forms. For example I got horrible ance and was treated with doxy, minacycline, tetracyline, etc until I recieved accutane at the young age of 12 (very rare). Because of all the anti-biotics they think it kept the lyme dormit. However in high school werid things started to slowly happen for example i broke out into hives, my lip swelled up so big I ended up in the emergancy room and i started having extreme pain with my ankles, knees etc. From what I understand the bacteria feeds on pretasone and my freshman year of college I again broke out into hive. The doctors gave me too much pretnasone and I ended up getting shingles. This is when my doc thinks it became active again. My immune system was down. The shingles went away in what felt like forever but was really only a few weeks. Just after that I woke up with the most horrible acne. I had to be treated yet again with pretnason the same thing that I had gotten shingles from. I was kept on the drug for almost a full year. I lost almost 20 pounds, which is werid because usually people gain weight. I continued to experience werid things like virtigo which i had never had before two years ago and hives very frequently, as well as horrible stomach ache, loss of memory or concentration, and it finally got to the point that i was throwing everything up. I left college for the second time and saw docs for 6 monthes. They told me I was balemic, that i had ibs and serveral other stomach problems. I knew there was something really wrong with me. We found a doc outside of kaiser who tested me for lyme and of course the answer to everything. That is my long story but here are my questions: Now I am 21 years old and I am on tons of meds. These meds make me tired, gain weight, and bord. I am taking Valtrex for the mono and shingles which haven't properly been treated. I'm taking minocyline for the lyme. I am about to start another med for a co-infection (there are two, and I have them both). Does ne one have ne advice for me? Does ne 1 know of ne doctors who would take me on pro-bono? My doc is great but she isn't covered by kaiser insurance and it's too expensive for me to go there (i'm in so much debt already)! PLEASE HELP! e-mail me at [email protected] or write me back on here..thanks!
Posts: 19 | From Northern California | Registered: Sep 2005
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posted
Sorry, don't know of any doing pro bono lyme treatment. But there are some freebie programs for drugs. Did you read the newbie links at top of the page? Think details about these programs are in there somewhere.
Also, CA has some support groups. Maybe you might want to check them out. Click on support groups line in green menu box left side of this page.
Sounds like you have finally found some help.
Did you mean to say prednisone? If so, this is a steroid which depresses the immune system and makes it less able to fight any bacterial or other infection. This is why it is not taken by lymies usually.
When you post messages, please break them up into paragraphs. Lymies have a hard time reading long solid blocks of text. You may get more replies if you make it easier for us to read. Can edit your message to add paragraphs (click on the little pencil symbol).
Posts: 8430 | From Not available | Registered: Oct 2000
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
It's bad enough for an ole fart like me to get this disease...I really get sore when a young person gets it.....
Is there a FREE CLINIC in your area that might take you on as a patient??
That's about all I have to offer...except perhaps telling you to stop the prednisone for crying out loud...it does'nt seem to help...maybe get on that antidepressant that roche has that also fights acne...it's gotta be better than the prednisone.
Also might check in with your church services...they may have a doc in your congregation that's willing to help...zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Zman--I think church is a good starting place--go to the diosis or find out names and network, network, network--I'm doing that right now to get prnatal car for a pregnant girl here at work, single, non insurance.
I also take valtrex for the Epstein-barr (mono).
You need to really start taking care of your body. If you can find someone who could suggest good suppliments that has helped my husband. Also if you could find a GP who understands the disease. You need some adderall or something so you can focus and get a few things done a day.
I have a step-daughter your age--my heart would break if she got this--we gotta get you well, you have your whole life ahead of you.
Please let us know what happens--we really care.
Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's CDC"This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis." From the CDC case definition: From: Cheryl
Yeast Problem Diet too Oral Yeast Oral Yeast ZIPZIP Thanks Flora Beneficial Flora: Bifidobacterium bifidum, B breve, B infantis, B lactis, B longum,Lactobacillus acidophilus, L brevis, L bulgaricus, L casei, L gasseri, L plantarum, L paracasei, L rhamnosus, L salivarius, Lactococcus lactis, Streptococcus thermophilus
CDC Citations for the Underreporting of Lyme disease From Cheryl
Emerging Infectious Diseases, March-April 2000 "In North America, Lyme disease and endemic relapsing fever pose the greatest threat to human health and have received the most attention of the borrelial diseases. Approximately 14,000 cases of Lyme disease are reported in the United States each year; however, the actual number of cases may be 10-fold higher (2)."
MMWR January, 2002 "The findings in this report are subject to at least three limitations. First, because LD is reported through passive surveillance, LD is underreported, and the distribution and demographics of reported cases could be biased. Second, LD is underreported in areas where disease is endemic and might be overreported in areas where disease is nonendemic. Third, not all LD patients present with typical manifestations; other conditions might be confused with LD and laboratory testing might be inaccurate."
MMWR April, 2000 "As with a majority of diseases reported through a passive surveillance system, Lyme disease is underreported. Studies in Connecticut and Maryland estimated 7--12 unreported cases for each reported case (20,21). Additionally, the case definition has limitations of sensitivity and specificity."
CDClinkdead removed? "The overall incidence rate of reported cases in the U.S. is about 5 per 100,000 population, but there is considerable underreporting."
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Lindsay,
Welcome. It's a tough journey you've found yourself on, but be happy you are making steps towards recovery. I don't know of any doctors treating lyme pro-bono, but I'm emailing you a possible lead.
Our stories are somewhat similar. I was probably infected when I was 12, and although I had on and off symptoms, it remained pretty dormant for many, many years. It actually wasn't until I was 27 that I was almost debilitated by the Lyme.
I can't believe a doctor kept you on prednisone when you had vertigo! That's a sign of an allergic reaction, and they usually take you right off. Unfortunately, you have discovered that not every doctor is as bright, and knowledgeble and helfpul as we had once expected.
The best advice I can give is to start reading through the newbie links. It will take a while. But slowly work your way through.
Also discuss yeast prevention and yeast treatment with your doctor. When on antibiotics for a long period of time, they kill the good bacteria in your system as well as the bad. Yeast, also called candida, will often overgrow in its place and can cause all kinds of problems..including fatigue and digestive problems.
Many people in Lyme treatment take herbs or medicine that is anti-fungal and follow a yeast-prevention diet. You won't like this, the yeast prevention diet eliminates all sugars and most carbohydrates. Similar in some way to Atkins. The idea is that yeast lives off of sugar, so this starves the yeast. But, from your history of antibiotics, it sounds like you could already have a yeast overgrowth. It really is worth the hassle.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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bettyg
Unregistered
posted
Lindsey,
Welcome to this 24/7 educational & support group board, www.lymenet.org !
Here's TREEPATROL's and TINCUP'S combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this. Treepatrol constantly adds new links as they become available from the members here.
print & read Dr. B's (a lyme literate MD) info first; you will come back to this often.
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
Some guidelines from Betty/others on using this message board:
* Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.
* We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.
* You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding.
* If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes.
* To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out! * Also, we have ``lyme'' disease; not lymes... We are ``lymies''. * LYME SYMPTOMS - http://www.lyme.org/otherdis/ld_symptoms.html Bettyg, Iowa
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WildCondor
Unregistered
posted
Welcome!
You sound just like me 10 years ago. You will be okay. You will get all your answers now. I will help you as best I can. Stay strong!
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WildCondor
Unregistered
posted
Hi gain, I tried to email you, so i sent you a private message with tons of info. Hope it helps!
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