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07/31/2010 01:37 PM

enlarged spleen in lyme/

scharf
Posts: 3
Member

I think i have lyme for many years. western blot shows i do. now i have enlarged spleen and kidneys. nodules on thyroid. have history of panic, anxiety, rashes, tick bites, pressure in ear, skipped heartbeats. took 10 days doxy twice years after being bitten. have not had money to go to llmd.would like to know of one near huntsville, alabama. the spleen area feels full, no pain yet. sore bones though. many weird symptoms over the years. have been on 1/2 10 mg paxil since 1997. also 1/2 0.5 klonopin morn and nite. was put on this for nervousness, depression, panic by MVP doc. dont know how to get off. afraid of seizures. thinking maybe is going against my spleen or kidneys. am very depressed about all this now. any help appredciated. iam going to see hemotologist and gastro doc. my ins will pay for that. i am on disability for panic disorder. thanks in advance. rose
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08/01/2010 12:32 AM
Bettyg
 
Posts: 32292
VIP Member
I'm an Advocate

rose Smile

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 1st 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

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/NutritionalSupplements.pdf

Making the most of your LLMD visit

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=gettopic&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=gettopic; 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.

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

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

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. Click EDIT send when done. 

Go to LOWER BOTTOM MIDDLE; SUBSCRIBE TO THIS DISCUSSION to receive all replies.

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

rose, please break up your above post into 1 SENTENCE PARAGRAPHS; hitting enter TWICE after each short paragraph for us severely neuro lyme patients, like me..40 yrs., so we may comprehend and read this.

big thanks Smile

bettyg, iowa group leader


08/24/2010 08:09 PM
scharf
Posts: 3
Member

does anyone have enlarged spleen. thrombocytopenia? from lyme or co-infections? is there treatment?

08/24/2010 09:19 PM
VicMac
VicMac  
Posts: 1659
Senior Member

I don't know if I do. Have always wondered if my spleen has been affected by Lyme. I am pretty sure my kidneys have been, so I take a raw kidney glandular and it seem to have cleared up my urine.

So I have considered trying a raw spleen supplement to see if it boosts the immune system.

Alot of the things you mention, I can relate to. I have a seizure disorder from Lyme. I Am chained to my supplements to keep me from having a full blown seizure. But I still have night tremors and mini seizures in bed at night and lose alot of sleep because of it.

I am also having the skipped heart beats for the first time in my history of having Lyme. This scares me more than anything!

In many ways, the mental illness aspect of Lyme is a blessing for some of us, as it is often times the only way we qualify for disability benefits when our lab tests don't show positive.

I took Paxil for a while for the panic attacks and depression I got from Lyme. But it had a weird affect on the Lyme it seems, and made it shift into a position where it appeared to block impulses to my lower intestine. I could not eliminate no matter what. I had to go off the Paxil.

Basically I have found that Lyme reacts badly in my system to alot of chemical drugs. So I have mostly chosen the natural alternative root. ( This is not advice to do the same however, I believe each person needs to choose for him/herself. ) I am not a doctor, and don't want to give advice - only share my own experience.

I do hope and pray you feel better and find some solutions! Welcome to this forum!


08/25/2010 05:59 AM
VicMac
VicMac  
Posts: 1659
Senior Member

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