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03/28/2010 08:20 PM

Help Think i have Lyme Disease

Madz
 
Posts: 124
Member

Hello, im new here but i am need of help because i think i have had lyme disease for over 12 months now but i do not remember a tick bite although it is possible i have been exposed to areas at risk.

Im a 19 year old male that was relatively healthy/inshape a year ago untill these symtoms starting to effect me and it has gradually affected my health over the course of a year getting worse and worse. I am 6ft1 and weigh 140 pounds.

My symptoms are as follows:

6+ months:

General Fatigue/Weakness

Sweating/abnormal feeling (hard to explain)

Swolen Lymphe node (under arm, went away after a day)

Tinnitus type of noise in head

Pale Skin

Mild anxiety

Weird "horizontal Stretch Mark looking lines" on my back with a type of "ribbed line" under the skin when i run my finger across.(plz note their not actually stretch marks since i have not grown since i got them and i also have "blemishes" spread across my back in random places).

12+ months:

Heart Pain/Palpitations

Neck ache

Eye Flashes Black & White

I am not positive that i have Lyme disease as i have not been tested for it yet, but i have done a great deal of research and have already prepared myself by buying NutraMedix Banderol to see if i got a herx reaction which would tell me if i have lyme disease or not (i think).

I would really appreciate your expert advise and opinions if you think i have lyme disease or not, or know what my symtoms have been caused by. I can't live with this any longer, i went and saw my GP but didn't know what the lines on my back were caused by. My life does not seem what it used too.

Post edited by: Madz, at: 03/28/2010 08:23 PM

Post edited by: Madz, at: 03/28/2010 08:25 PM

Post edited by: Madz, at: 03/28/2010 08:25 PM

Post edited by: Madz, at: 03/28/2010 09:55 PM

Reply

03/28/2010 08:27 PM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

Hi and welcome

Not only do I think you might have lyme but bartonella too. It is a co infection that you can get with lyme.

The stretch mark appearance is classic bart.

You should find an llmd. If you post in that forum one of the other group leaders will help u find one. Give your state and nearest large city.

Also you might want to check our facts forum as well.

Carol


03/28/2010 09:48 PM
Tennesseemom7
Tennesseemom7  
Posts: 1050
Member

Hello and welcome to the group.

I agree with Carol, sure sounds like Lyme and looks like Bartonella..

There are many pictures on the internet of the Bartonella "rash". It looks like exactly what you are explaining. And you have many "classic" Lyme symptoms, I have had many of the same as you..

Get to a LLMD as fast as you can to get the treatment you deserve.

If you post in the request LLMD forum one of the wonderful group leaders will get you a list. Also you could contact www.turnthecorner.org to see if they have additional names.

Brenda


03/28/2010 10:25 PM
Madz
 
Posts: 124
Member

Hello Carol and Brenda, thank you both for your fast and kind response. I am glad to be around people who actually understand me about LD for a change. So far ive been to see 2 general practitioners and what they had to say was less than reassuring, 1 didn't even know what bartonella was and the other recommended i be tested for anemia which came back negative.

I am from england in the Uk so im not sure if its possible for me to find a LLMD, maybe i will have to self meditate with the herbal supplement side of things. Anyhow I have managed to find a Lyme Disease test facility in a local hospital here's the link: http://www.hpa.org.uk/web/HPAweb&Page&HPAwebAutoListName/ Page/1200660022877 i think they have a reference to there method's and medication they use, tell me what you think.

Sorry for the long text, i have just a small question. Is it possible to have bart without having LD?

Things have been deteriorating the last few weeks and came to a head last week, i was sick unexpectedly and felt very ill.. I can no longer uphold my busy social life and its affecting my relationship with friends. Im actually surprised ive kept myself together this long. I hope i have bartonella so i can finally know whats wrong with me, and do something about it instead of feeling so powerless about my own body.

The weird thing is i don't remember getting the typical red tick rash normally associated with LD.

Ive lost most of the confidence i once had as a young man and im afraid ive become less of a person. I would really like my old life back as this just doesn't seem fair.

Post edited by: Madz, at: 03/28/2010 10:50 PM


03/29/2010 12:55 AM
Bettyg
 
Posts: 32240
VIP Member
I'm an Advocate

welcome! england has only 2 llmds, lyme literate mds.

check your private messages, left side, for the info i do have on england!

MAJORITY OF FOLKS COME TO THE STATES; but it's extremely expensive.

YES, you can have bartonella WITHOUT lyme disease, but sometimes have OTHER disease too!!

i skimmed briefly your uk link; from what i read there:

they undertreat 200 mg MAX DOXY daily; iv for 2 weeks; so they treat IDSA, infectious disease society of america way.

infectious drs. treat from ONE pill to 3 wks. max and YOU'RE CURED! HOG WASH! you then develop CHRONIC LYME DISEASE which they do not believe in!

chronic lyme patients need ILADS, intl. lyme associated disease society guidelines, noted in my below welcome letter with important links galore for you.

they treat longer than 3 wks. up to years of oral/iv antibiotics and use other alternative therapies.

Welcome to MD JUNCTION!! I'm so glad you found us! You've come to the right place for education and support!

The following are some links that may be helpful to you:

Seeking a lyme literate md; start YOUR OWN POST on this new forum; do NOT just add it to the introduction post only.

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info/1181374-lyme-literate-md-requests#1181957

(applies ONLY to those who posted elsewhere already ok.  )

NEW FORUM, SEEKING LLMDS, the last forum

start a NEW DISCUSSION by clicking on that at bottom of the page, copy your text to the body of message as you posted above read my detailed instructions in christine's 1st post explaining how to use this new forum; big thanks! Hugs; example below

subject: 4 yr. old needs KIDS LLMD IN MD, VA, DC area

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info

Lyme Disease and Co-Infection Symptoms

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/318635-lyme-and-co-infections- symptoms

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386

Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" http://www.ilads.org/lyme_disease/treatment_guidelines.html

Pages 17-19 discuss Adult and Kids Treatments

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1173561-08-kids-lyme-guidelines-of- dr-burrascano

Dr. B's Supplement List

http://www.lymepa.org/Nutritional_Supplements.pdf

Making the most of your LLMD visit

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=get_topic&f=1&t=020605#000005

Herxheimer “herx” side effects to antibiotics & supplements …. Symptoms, treatments, and more! 1.25.10

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1186591-jarischherxheimer-reaction- symptomstreatment

Herxing Reactions:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89322

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=041517

CHECK OUT THE “LYME FACTS” forum; lots of good, accurate info there for your lyme journey.

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research

print off BUT YOU LOOK GOOD article on page 2 of this post where I broke it up for others to read easier; we neuro lymies!

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/1275535-feeling-guilty-for-being- sick/limitstart/10#1279159

Suggestions for When You Need Treatment and Funds Are Low plus Financial Burdens post towards bottom; extremely detailed by Melanie Reber

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/22281

WHAT IS LYME DISEASE? as quoted by Dr. Burrascano

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1123178-a-must-read-for-new- members#1124851

Link to Turn the Corner Foundation: Good info and contacts for finding a good LLMD.

http://turnthecorner.org/lyme-disease-quick-facts.htm

LYME YAHOO GROUP BOARD FOR EACH STATE FOUND HERE!

People seeking doctors might be able to get help from their state online information and support group. The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.

To find your state group, go to

http://health.groups.yahoo.com/group/statenamelyme

example: http://health.groups.yahoo.com/group/newyorklyme

South Carolina is the only state that needs a hyphen between the statename and lyme, e.g. http://health.groups.yahoo.com/group/southcarolina-lyme

http://www.lymenet.org/SupportGroups/

This explains the MEDICAL “POLITICS” AROUND LYME and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs, naturopathic doctors:

www.clinicaladvisor.com/Controversy-continues-to-fuel-the- Lyme-War/article/117160/

You should also be evaluated for co-infections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing.

www.igenex.com; http://www.frylabs.com; http://www.clongen.com; http://focusdx.com

For the Igenex Western blot IgM and IgG blood test drawn on M, T, or Wed am. Check current$ 3 wks. for results!

Call 1-800.832.3200 for current prices.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 78648?#000003

They will also send you a free “test kit” with their required form, all the test vials, & box to ship it in with return postage!

Be sure to download Igenex's required form IF you haven't called for Igenex to send you THEIR test kids!

MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he's ordering the test.

Optional tests include: co-infection panel for your area of country and PCR whole blood

Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.

Get copies of all of your special bloodwork.

Overseas instructions for sending to Igenex/Fry Labs 2-23-08

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=063751

Dr C's Western Blot explanation is discussed here:

http://www.mdjunction.com/forums/lyme-disease-support- forums/tips/1092391-missouri-drcs-western-blot-explanations- of-nos#1093495

http://www.mdjunction.com/forums/lyme-disease-support- forums/tips/3683-igenex-calif-western-blot-igmigg-testing-

ILADS - The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. www.ilads.org

Call ILADS they are happy to refer to LLMd's around the country. Here is the contact link, scroll down beyond the email form for their phone number:

http://www.ilads.org/contact/contact_ilads.html

Under Our Skin Lyme Disease documentary www.lymediseasefilm.com

American Museum of Natural History 2 SLIDE SHOWS

http://www.amnh.org/sciencebulletins/index.php? sid=h.s.lyme_brain.20100125

when you get to the site go to upper right hand corner and type in LYME DISEASE hit enter and it brings you to this very well-done slide show on LYME disease! it shows ”brain lesions” too. 1st one is DATED JAN. 25, 2010.

Betty, Minoucat, & Connie Mc's SSDI, SSI, & LTD DISABILITY RECOURCES FOR Disability, Insurance, Dealing with HMOs

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/3118-bettygs-disability-info-25- pages

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/13935

Success Stories

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/57269-post-your-success-story-here

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/15820

Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients …..MUST READ!! EXPLAINS EVERYTHING !!

written by Marian Rissenberg PhD & Susan Chambers MD,

The Lyme Times, Vol. 20, Jan-Mar 1998, pp. 29-32

http://www.anapsid.org/cnd/diffdx/rissenberg.html

NEURO-COGNITIVE LYME DISEASE links from cheryl's site 1.10

http://www.lymeinfo.net/neuropsych.html

Porphyria (including KPU)

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 87840?

cardiac symptoms please read!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77325

SUICIDE HOTLINE PHONE NO. & PREVENTION TIPS

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=058059

http://www.mdjunction.com/forums/lyme-disease-support- forums/medicine-treatments/1275497-national-suicide- prevention-lifeline-tips

TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=get_topic;f=1;t=065801

VESTIBULAR SYMPTOMS

http://www.vestibular.org/vestibular-disorders/symptoms.php

DIZZINESS - many details at this thread

http://www.mdjunction.com/forums/lyme-disease-support- forums/medicine-treatments/Itemid=217/func=post/do=reply

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 65801?

TREEPATROL'S New Member Learning links: this can wait! There are OVER 1,000 LINKS here but treepatrol has organized it as best as he could

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/29917

NEED A LAUGH, READ HERE & ADD YOUR OWN

http://www.mdjunction.com/forums/lyme-disease-support- forums/lounge/1041725-looking-for-my-need-a-laugh-post- bettyg-started

you tubes, post your FUNNY or INSPIRATIONAL ones here http://www.mdjunction.com/forums/lyme-disease-support- forums/lounge/1114416-you-tubes-post-your- funnyinspirational-ones-here

Betty's suggested posting guidelines:

Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend; example, me, 40 yrs. neuro chronic lyme, so we are able to comprehend and read. Then we can assist and guide you ok.

please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short.

1-2 sentences MAX and hit ENTER TWICE to doublespace between each paragraph. hugs DO NOT BREAK UP THE SENTENCE THOUGH…we neuros lose our train of thought if it is broken up in the middle unless it goes on FOREVER!

For easier reading, please edit your post. You can break up your longer paragraphs into smaller paragraphs. Please hit “enter” key twice after each paragraph, also.

Go to left hand corner; mark box to receive all replies and click edit send.

Thank you for posting in a manner that makes it easier for all to read and help others.


03/29/2010 04:55 AM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

Hi again

Yes you can have Bartonella with out LD, however its common for them to be together. I have 2 strains of Bart. there are 30 but they only have tests for 2.

Im not all that familiar with the UK system. We have another member fron the UK named Fraggles. Hopefully she will see this.


03/29/2010 05:04 AM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

Forgot.. Only 30% get the rash . I never did nor did my youngest, however my oldest did and still tested negative for 14 years.
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