Lyme Disease Support Group

Her current LLMD has effectively dropped her as a Lyme patient, taking her off the pain meds that have been working.

He claims to be on the safe side, but he has also prescribed methadone, which has been a complete nightmare, including numbness, nausea...

At her insistence, he is lowering her off the methadone.

Net result, he is having her stop all pain meds, in her immuno-compromised condition, and I am fearful for her health.

He said it will take a few months, but you'll feel better once you are of all pain meds. I am not sure she can take the withdrawal right now.

Her weight has dropped from 140 lb to 110 lbs, and she is not eating well (enough) due to the Lyme attacking her teeth, gums and jaw.

She had all but a few teeth removed about 6 months ago, but continues to be in pain to the point where she cannot chew.

She is on total disability due this illness.

While she was on oxycodone, it alleviated the pain enough for her to function,[b] but now she is bed-ridden and wasting away. I need help ASAP.

She was a mental health counselor, and had to close her practice due to this insidious illness. [/b]

First job:

Find an LLMD who does not charge exorbitantly.

I realize insurance will not cover this, but I have been:

* unemployed for 18 months (software engineer),

* the house is in foreclosure,

* I have been ferrying my pregnant daughter to and from the hospital 60 miles away because she is bi-polar (and 8 months pregnant).

My son and other daughter have come to live home due to circumstances in their lives (understandable), which is adding to the overall stress level in Mary.

In lieu of an LLMD, she would be happy to see a GP who, at the very least, does not dismiss Lyme, or her symptoms for that matter.

We can then ask for a referral to a pain doc.

Her current LLMD has her in a real bind: he suggested she get a "second opinion" from a pain doc.

When she went, it turned out to be a complete setup. He was about to prescribe pain meds, but called her GP (LLMD) first.

He came back into the exam room, and said he would not go against her GP's recommendation of not prescribing.

She can't seem to get any pain relief, so the sooner we can find a pain doc, the sooner she can start feeling relief.

Thanks for reading the long post, but I need to do something fast.JD

broke up solid text, bolded/used quotes to enlarge text for neuro lyme folks like me/others. bettyg, iowa leader

Post edited by: Bettyg, at: 11/05/2010 01:37 PM

check your private messages left side for vermont/NEW england states since some places may be close to you; i don't know.

so extremely sorry for your wife & you; i broke up your entire post; emphasized other things too.

************************************

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

File this in ARCHIVE, upper right hand corner! PMs deleted in 30 days!

PLEASE DO NOT POST YOUR GIVEN FULL NAME!

http://www.mdjunction.com/index.php?option=com_joomlaboard&Itemid=217&func=view&catid=3260&id=1345278

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

http://betterhealthguy.com/joomla/blog/216-ilads-2010- conference-takeaways

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

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.

john, in the future, please break up posts/replies to 1-2 sentences MAX; hit enter twice after each short paragraph for us extremely neuro lyme folks so we can comprehend and read.

thank you for helping us help you; god bless you

He prescribed 18 oxycodone to last until tomorrow, Monday, when she will hopefully see her GP.

Tomorrow will be a good day, because there are only two outcomes after the meeting with her GP:

1. He agrees to prescribe pain medication in the dosage she suggests Oxycodone for breakthrough pain, 30mg, 3x/day.

Combine this with Opana for maintenance, 20mg,

-or-

2. He refuses to back off from his "first do no harm" approach by refusing to give Mary pain medication, and on top of that pushing her onto Methadone, which she resisted and told him she did not want to take.

She's a Drug and Alcohol counselor, and intellectually knows the effects of these chemicals.

But now, on a visceral level, she know the methadone provides her with NO pain relief. Morphine didn't work. She's been clear to her GP.

His response was, well, in three months you’ll be off the methadone.

Help me here, folks. He is aiming for a point in her treatment 3 months in the future, where she will not be on oxycodone, or any other pain medication, as well as being off Methadone.

He is not treating this Lyme patient.

She continues to lose weight. She was always 135-145 (she’s 5-8). A year ago she was down to 103.

Then a couple of months back, she was doing better (weight about 125), and her GP even commented that she looks good in “all areas.”

Her weight is now about 120, trending downward.

She is pale, circulation is not good. (I think she and my daughter contracted ringworm yesterday)

There is no reason for her to be in this condition.

There are things that can be done now to alleviate her suffering. Call it palliative or whatever, she needs relief before she takes her life.

Give her the pain relief she needs. If her pain level goes down, she will be able to eat more.

Most of her teeth were pulled last year, and the remaining teeth, gums, and infected jaw cause pain from a 6 to a 10 on the pain scale.

Then she will gain weight and feel less pain. Am I missing something in this equation?

As of this writing, Sunday, Nov. 7, my wife is sleeping on the couch. I'm crying.

I am so happy she is actually sleeping.

Now she is talking with my daughter Kim who recently moved back from San Francisco.

They are having a good time.

This would not be possible if the ER had not prescribed pain meds.

I am not good at “ringing the bell,” but I don’t know what to do.

emphasied major points going on to help them best, iowa leader

Post edited by: Bettyg, at: 11/08/2010 01:01 AM

~~~Google MMS,Miracle Mineral Supplement,to learn about it,and have her swish this in her mouth before swallowing.

~~~I have been using this for eleven months with no long term adverse effects,other than when taking too much too soon and only for a temporary and short time as in for a few hours or a day.

~~~If you do decide to try it...

~~~Be very careful with the MMS.It is powerful stuff.However,with an uninfected with pathogens person,they can take 15 drops three times a day and have little to no ill effects.

~~~With some who are overloaded with pathogens,especially Lyme, may react intensely when beginning.

~~~So it is advised to start with 1/2 a drop,always mixing and swirling in bottom of glass, 1 drop MMS with 5 drops of citric acid solution for three minutes and then add 4-8 oz or more of water, once the first day.(Except for swishing,do several drops,mixed properly, and spit out,unless she is up to several drops or more level in which case she can swish and swallow.)

~~~To measure 1/2 a drop MMS,mix one drop MMS with five drops Citric acid solutiion for three minutes and use half and dump other half.If no reaction,next day try one drop.If no reaction try one drop twice in a day.If no reaction try two drops once in a day and so on until she reacts.She may feel nautious and/or loose or very loose stools.This is "normal."

~~~When this happens you have reached your therapeutic dosage.If the reaction is too strong back down a drop or two.This may continue for days,weeks or months before adding more drops.

~~~DO NOT try to rush this process or you may react too severely and may be scared away from a potentially very useful therapy.

~~~As you increase in number of drops the taste will get stronger.You will get used to it.I have been using it for eleven months now with no adverse effects,and only temporarily too strong effects when I increased too much too quickly.

~~~With pothogens unrelated to Lyme,drops can be increased to 15 drops three times a day fairly quickly and the infection whiped out,but Lyme is a whole different animal and could take months to years to bring into submission and remission,just like any other effective therapies.

~~~I have decreased down to one drop a day,even skipping days, as I am very ill and loaded with pathogens and for a very long time.

~~~So approach this slowly,carefully,cautiously.If you can find a dropper for your MMS bottle it would be advisable because the tops I have been sent have been lids that are too tricky for easily counted drops.

~~~With the citric acid,plus or minus some drops do not matter,but with the MMS,depending on your level of infection and reaction,the difference of one extra uncounted drop could be great.

~~~You can order it from PGL International,Project Green Light.It is listed under water purification drops.It will cost less than $30 with S&H for a four ounce bottle MMS,that's about 3600 drops/4oz,with the citric acid activator.It will be sent to you within a few days.

~~~Also,from vitacost.com,order Amazon Therapeutic Labs Sangre De Grado -- 1 fl oz bottles

Item No. 838451006469 and have her swish some and keep it in her mouth and swallowing.

```````~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Lovey-Dovey,Mitchell~~~

Post edited by: waxby, at: 11/08/2010 06:47 AM

i'm so sorry for everything that is happening right now to mary.

YOU'RE AN OUTSTANDING HUSBAND & ADVOCATE for your wife.

for once, i have no advise; haven't encountered this before honestly.

i sent your link to someone with medical background; hopefully she will see this and perhaps PM you; i don't know; but i have tried for you both.

have 2 more after thoughts:

ILADS HQ EXECUTIVE

Executive Director: Barbara L. Buchman [b]I

EMAIL BARBARA: LYMEDOCS@AOL.COM ..she answers me in 1 work day!

Address: PO Box 341461

Bethesda, Maryland

20827-1461

Phone: 301.263.1080

Fax: 301.263.0776

Email: contact@ilads.org

******************* **********

call BRIAN FALLON'S OFFICE AT LYME RESEARCH CENTER at columbia univ. NYC

http://www.columbia-lyme.org/contactus.html

If you need clarification of these directions or if you get lost, call 212-543-5367.

How to Contact Us

If you are an adult who suffers from neurocognitive and/or neuropsychiatric symptoms which may be due to Lyme or another tick-borne disease,

please consider coming for the two-day, outpatient, second-opinion evaluation at the Lyme and Tick-Borne Diseases Evaluation Service.

For further information,

please contact Dr. Kathy Corbera at (212) 543-6508.

Inasmuch as the evaluation is comprehensive and a limited number of patients can be seen each week to accommodate the large volume of requests for appointments, it might be several weeks before your telephone call is returned to set up your appointment.

There is a waiting list. We appreciate your patience.

In the "Research Studies" section of our Web Page, you will see a listing of current studies.

If you are outside of commuting distance to New York City, it probably does not make sense for you to consider participating in one of our studies (unless it is a one-time evaluation study).

If after reading about the research study, you wish further information about the study, please send an e-mail to the following address:

lymecontact@columbia.edu.

Please understand that although we know a lot about Lyme Disease, we cannot make clinical recommendations over the phone or through e-mail about patients we have not evaluated in person.

We advise that non study-related questions be addressed to your local health care provider.

If you have a question about Lyme or other tick borne disease that would be of general interest, please submit it to 'Ask the Doctor'.

http://www.columbia-lyme.org/contactus.html

THIS IS EVERYTHING I CAN THINK OF; hope it helps you! hugs to all.

praying for mary and you jd on his horrific journey you're going thru.[/b]

Post edited by: Bettyg, at: 11/08/2010 01:27 AM

did you have any luck with my suggestions?

i referred someone to this post also; she'll try to do what she can to help your wife.

praying for your wife & you john; hugs to you both during this sressful time.

One concern: They use the Mayo Clinic lab for Lyme testing. Not a good sign, as you will see if you research their references for their Lyme policy.

Does the patient have the right to specify which lab to use? Our preference is IgeneX with which we have dealt before, and am happy with the thoroughness of the testing (# bands, etc.).

YES JOHN, the patient HAS the right to select the lab they want things tested; I DID!

some give you a bunch of crap about this since they have a "contract" for blood work to be done by certain labs!

yes, MAYO CLINIC STILL DOES NOT HAVE A GOOD REPUTATION ON BLOOD TESTING, DIAGNOSIS, & NO TREATMENT even after patients have been there 1 wk. totaling $100,000 charges!

i have heard of ONE person not hundreds or thousands who said their blood lyme testing was positive!

make sure you have all the info, the specifications of which colored viles to use, etc from igenex.com's site.

but you NEED DRS. SIGNATURE, DATE, and full info of address, phone/FAX nos, etc. to complete their paperwork.

look at the welcome letter i sent you, 4-5 other type of people CAN REQUEST this blood testing from igenex.

she is on SSDI, disability insurance work benefits; is she on MEDICARE NOW TOO? if yes, medicare will pay all but around $50 of blood testing for lyme and co-infections.

did you call ANY of the llmds i sent you info on when you posted? can THEY HELP PAIN relief??

i'm out of ideas for you since i have NO MEDICAL background.

may god or whoever you believe in step in and carry your wife and give you both guidance on which specific steps to take now.

i'm praying for you both and your family.

bettyg, iowa leader