Lyme Disease Support Group

Seems there are a few "lyme" board on here and this is most active so I will post message as well.

Note: I am still undiagnosed and could be anything at this point - lyme (or other tick disease), MS, Fibro, tumor, cancer - wish I knew and can be treated!

I found a lot of good information on here and thought I would join (been a member of another board for a couple of months as well). Seems everyone is trying to help each other deal with these nasty diseases.

Since the new year I have not been well. I had a week period when I had chills, fever, aches and my armpit lymph nodes flared up (could feel raised bump under each arm). During this time, I felt odd feeling in arms - sometimes pains, sometimes weakness, sometimes stiffness - thought it was part of this bad episode. However, the lymph nodes went down and was left with weakness/neurological issues in both arms and now have headaches. Even though lymph nodes went down I still have similar issues in my armpits as in my arms itself (not sure if that lasts for tick-disease). I also have had weird feelings in ears (nothing detected in left ear and right ear started similar symptoms recently) and nose is stuffy/clogged but rarely runs (not sure if this is sinus or what).

Note: I did have flu-like symptoms only in Nov and went away - didn't leave any of issues above.

The blood tests taken a week or so later and the following week at ER came back ok. Tests were then done for lyme (mentioned I had rash back in July on neck and back and went away after 4 weeks or so and then another rash on neck only in November). Those tests all came back negative - ELISA(?), Western Blot, all of the co-infections. I am supposed to re-test in a week.

Went to see Rheumatologist as for a week or so I had artritis-like feeling in wrists and other side of elbows; after discussion and determining it wasn't true arthritis I was prescribed 100MG of doxy for possibe lyme even though tests were negative. Felt better 2 days later but the next day felt bad and had bad headache. Called the office up and said to stop taking it until I see the neurologist I had an appointment scheduled for. Headaches have pretty much gone away but does come on briefly; primary said to keep eye on it and come in if they come back - said it takes sometimes a week to come off doxy. However, it may not be the doxy causing it (as well as some nausea but that wasn't too bad).

Went to Infectious Disease (lyme specialist) and based on physical tests and previous blood work she said it isn't lyme or other tick disease. The previous lyme tests I took was not out of igenix lab, just done at a location in NJ and didn't test like igenix.

I am now waiting for neurologist appointment. Have not checked heart (may at least do EKG next Friday or sooner) and have not had MRI/CAT etc. as they said neurologist would be best to direct in that direction.

Just looking to be comforted/some support if anyone has any thoughts on what this could be. I plan to set up a ENT and LLMD appointment. If anyone is familiar with Dr E or Dr S in south NJ I'd like to hear thoughts (or if there is a better one). I have insurance (BCBS) but none are covered and not sure how to locate a LLMD that does accept my insurance as LLMD is not a category to search on.

Thanks for listening and let me know if you have any thoughts.

I think that you will find even if you don't have Lyme that the LLMD will help or point you in the right direction. Most LLMD's are excellent diagnosticians due to the varying health issues their patients come to them with as well as the symptoms & syndromes caused by Lyme Disease.

Welcome

I am waiting for a call back for appointment with LLMD - should be in ~3 weeks which is good since I have neuro on wed and may have to do a blood test or MRI, etc. beforehand - best I guess to rule things out before going to LLMD.

The LLMD I am going to see is only 4 miles from my house and supposedly well respected so I will hopefully be in good hands.

I just want to be dignosed with something so I can get treated! My rheumy put me on doxy 100mg 2x day and on 2nd day felt better than I have in 2 months but the next day had pretty severe headach/pressure and bit of nausea. The reumy said to come off of it and wait until neuro to determine next steps. Perhaps it is what they consider "herx" - even so the issues were pretty unbearable - couldn't even work while they were present - but if it is a good sign then maybe I should have kept taking. Right now I am taking nothing - so not sure what is worse - neuro is in 5 days so I may as well wait.

Dr E is mine and my 2 daughters LLMD and Dr.S is only a few miles down the road. I have lots of patients that see him too. Both are very good. PM me if you need anything.

Below is what you should expect from a 'herx' if you are diagnosed with Lyme Disease:

Some information to put a herx into perspective: A herxheimer reaction (I am including the "cytokine storm"-inflammatory immune component--as well as toxins released by bacteria being killed into this) occurs with the H1N1 virus, too. Scientist believe this is why the mortality rate is so high in young adults with the virus.

It can be dangerous to push a herx too hard, too fast. While I have never heard of a herx from Lyme killing anyone, it has put some in serious condition in the hospital.

The endotoxins released when the bacteria is killed have the potential to cause endotoxemia (toxic shock). This would likely put you in the hospital. This is also why there are certain drugs that you cannot use for Lyme Disease due to the extremely high risk for endotoxemia with gram negative bacteria.

What you are experiencing during a Herxheimer Reaction is two different processes:

1. The cytokine response of your immune system which causes symptoms like: fever, extreme fatigue, nausea, redness & swelling.

2. The toxin release by the bacteria which can cause the symptoms mentioned above, symptoms of an "allergic reaction", in addition to any symptoms you would experience during the course of your disease. It is difficult to predict how an individual's body will react to this.

Detox can help alleviate a great deal of the symptoms.

This info should help you when you meet with the LLMD

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 show: 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/Itemid=217/func=post

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

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. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.

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

Type your state name and lyme as one word, like this -

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

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 $$!

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

BRAIN IMAGING MRI & SPECT MS, LYME , COLUMBIA UNIV 07 http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=058128

BRAIN DIAGRAM PHOTOS/DEFINITIONS 9-07

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

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

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 DISORDERS ASSOCIATION

www.vestibular.org

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.

2-3 sentences MAX and hit ENTER TWICE to doublespace between each paragraph. hugs

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 and 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.

howdy whipcrack

please edit your LONG PARAGRAPHS ONLY; short ones are fine as is. i'd like to be able to read your entire story, and for us severely NEURO lyme folks; we just can't read or comprehend long paragraphs.

we need them short and to doublespace as you did the rest of your post.

on your reply i see you really lucked out; 4 MILES FROM A LLMD!! unheard of!! count your blessings as many of us travel 100-1500 miles to see our llmds.

gee, if you had an extra guest room, you could rent it out. lol hugs

Thanks for the information; I will need a few days to review.

I will also keep in mind to double space and such for those have neuro issues.

Based upon a lot of people traveling hundreds of miles or flying great distances I feel very lucky. I'm in south NJ and you all probably know the 2 well known LLMD's here - I am going to have appointment with female LLMD.

I actually have 2 spare rooms; no beds yet as getting well is my main focus but if someone needs a place to stay I'm game.

Thanks so much guys; sometimes you post messages and never hear back - this is great.

Few questions:

- since this started my left ear has whooshing sometimes when walking or crinkling when touching behind ear; primary said it was allergies. Agree?

- my nose has been stuffy for last 3 weeks - very little discharge but does free up a bit when first waking up; anything?

- think I should see ENT to rule any issues out?

Post edited by: whipcrack, at: 02/26/2010 03:05 PM

I answered you over in the Lyme/Fibro group the other day...

Always rule out what you can...

And your choice in LLMD - very good - was mine loved her - she treats my mother and siblings - I moved to CO - so its just a little too far for me to travel...LOL...

very common tho to have sinus and ear nose throat issues with Lyme...remember it is like a gateway disease...it breaks our immune systems down and opens the doors for everything else...

Let us know how the appt goes...

Christine

goggle "Lyme and Brain SPECT". Dr. Brian Fallon identified hypoperfusion patterns with Lyme patients. If you are seeing LLMD or Neurologist, they can order it for you.

We had negative findings on MRI, CAT/PET scans. Brain SPECT showed mild hypoperfusion pattern. Screeening ELISA negative from 3 labs. WB bands preseent from 3 labs. Both the ELISA and WB tests have serious False Negative problems. You can find the papers on google or google scholar.

I think I will make an ENT appointment as it could hurt along with the LLMD. Will see what happens with neuro in a few days and ask about Lyme and Brain SPECT test.

I didn't spend too much time looking at the physical rash as everyone said that if you have one it is a bullseye. However, looking at photos of confirmed cases the one on my back looks like some of them as well as the one on my neck (appeared July 2009). I got another on my neck in November as well. Just helps me think it may be this type of virus rather than something untreatable.

Just hoping that I get prescribed something within 3 weeks - guess the longer this goes untreated the worse it will be. Seem to get worse at the end of the last 2 months, which I read is possible due to virus cycle.