Lyme Disease Support Group

Coming back from a family trip i thought it was a relaspse of the flu..and given a bad antibiotic levaquinn

i stopped the antbiotic landed in the hosp w/heart palps muscle spasms etc....but what completely debiliated me is this head neck presure that started a few days later..that is 24/7 but varies in severity, along with severe neck stifness and spasms radiating to my head.

It is hard to move my head without my neck going into full spasm..can't excersice or do ----and i was in great shape.I also have facial spasm or tingling around the sinus area and around eyes..

CT shows no problem..CT"S mri mra of brain neck sinus etc..iam one sick healthy person from wht the doc's have to say.

My problems are from the chest up...after seeing MANY specilists i was told i had bad discs in my neck c567 but my symptoms do not corelate completley with their dignosis.

Then on to Chari brain malformation which they seem to rule out.

I have been tested for lymes about 7 times all negative only one band which is not enough for treamtment despite the fact i had a giant bulls eye rash on my chest 2 1/2 years ago....left UNTREATED!!!!

I also have a constant low grade fever.

i had to have my appendex removed the night before thanksgiving to make matters worse..but the surgeopn said "You have lymes"..when i told him my symptoms..so he ran more tests.all negative of course but he sent me to a lyme specilist in Conn. that will treat me based on my symptoms.

This will be in Jan. so in the mean time iam suffering!!! i do not have the other symptoms that lyme brings.

can anyone tell me if this makes sense..forgive my jumping around of words and poor spelling its hard to concentrate in pain.

i never thought anything in this world would ever cause me to think about ending my life,but this does although i would never harm myself,,just the thought alone scares the ---- out of me.

I have become a burden to my family and iam not the same person i once was...i guess iam just searching for answers or anyone who can help ease the pain..thanks in advance...my heart goes out to all in pain.

Post edited by: jennn, at: 12/06/2009 04:06 PM

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

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

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://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 80440?#000006

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

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

New Member Learning links:

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

Link to Turn the Corner Foundation: Good info and contacts for finding a good LLMD. http://turnthecorner.org/lyme-disease-quick-facts.htm

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 coinfections. 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

Dr C’s Western Blot explanation is discussed here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=042077

http://www.mdjunction.com/forums/lyme-disease-support- forums/tips/Itemid=217/func=post

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

Under Our Skin Lyme Disease documentary www.lymediseasefilm.com

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

For the Igenex Western blot IgM and IgG blood test drawn on M, T, or W. Check current $$! Oct. 2008 Price List … info only. Prices have increased on some! 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. 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

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.

please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short....5-6 lines MAX and double space between each one ok. 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.

jen, i have severe neuro lyme of 40 yrs. and can not read anything past the 1st line.

could you edit your entire post into SHORT paragraphs and double space between each paragraph?

then i/other neuros will be able to read, and then hopefully we can help you and give you advise. hugs/kisses big thanks! betty

Sorry you are going through all of this - but glad that you have found this...

Your story is not uncommon AT ALL...we all have our variations - but will find others who with whom we have much in common...

Surprised yet glad that the surgeon figured it out and got you to the right doctor...

For now there are some things that you can do at home while you wait for your appt...

Diet changes...Gluten Free - no refined sugar and no processed foods...lots of veggies and moderate fruit, nuts and lean meats are good...

water - half your weight in ounces daily of plain or quality mineral water...this will be very important when you start treatment...also 2-3 cups of water with lemon or lime juice to reduce acidity...

I talk about these things ALL over this site...

You can pm me for more info - as there are some supplements that you can get on that will help prepare your body for this journey...

Hang in there - you can and will get better

Christine

This may not be a swift walk through this path but I believe it is the right one for you. You will learn a lot from everyone here...And that truly will help a lot.

*HUGS*

Welcome to the group.

Hang in there you will feel better. How fortunate that the surgeon could point you in the right direction.

I have been on oral anti-biotics since being diagnosed in August. I am feeling a lot better. My symptoms are mild and are much less frequent. I hope that before long I will be done with the anti-biotics.

My husband is also doing much better. He has been on IV anti-biotics since June. The fatique, memory fog, add and dyslexia that was driving him nuts are almost none existent. He still has very mild and rare pains. Nothing like before.

Hope you are soon feeling better.

God Bless,

Kathy

quoting you ...

I have been tested for lymes about 7 times all negative only one band which is not enough for treamtment despite the fact i had a giant bulls eye rash on my chest 2 1/2 years ago....left UNTREATED!!!!

I also have a constant low grade fever.

i had to have my appendex removed the night before thanksgiving to make matters worse..but the surgeopn said "You have lymes"..when i told him my symptoms..so he ran more tests.all negative of course but he sent me to a lyme specilist in Conn. that will treat me based on my symptoms.

This will be in Jan. so in the mean time iam suffering!!! i do not have the other symptoms that lyme brings....

I have become a burden to my family and i am not the same person i once was...

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

jenn, which lab did your lab testings? sounds like NONE were SPECIALTY ones like:

igenex, mdlabs, fry labs, clonagon, stoneybrooke ... these are the ones who test for all protein bands.

please send me a private message, pm, and give me the full name and city/state of the llmd this surgeon gave you?

i have a nationwide llmd list and i want to make sure this llmd IS ON MY LIST and NOT an infectious disease dr. who treats from 1 pill to 3 wks. max!![/b

i'm so sorry for all the pain you have been having with headaches; lyme is notorious for this but other things as well.

jenn, you are NOT a burden to your family; it's so hard on all of you, and i hope you have a SUPPORTIVE family which most of us do not.

no, you/we are NOT the same people we were, and will never be who we once were. we will be better since we learn compassion, patience, tolerance, overlooking small things, and see things thru different eyes than before.

[b]FOUND THE BELOW HEADACHE LINKS IN MY FILES ....

Headaches, Nausea & Vomiting, GP, Diet Info from Cornell Medical College 2-08http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=063526

HEADACHES & LYME DISEASE links from lymemomtoo 10-20-09

Also print this abstract out (below) and include it (contains info on headaches and Lyme) separately with a note printed and stapled: http://tinyurl.com/yhmwoea

Print this out also and put a cover note on it - "even the CDC recognizes headaches as a symptom of Lyme disease." http://tinyurl.com/yjz7as5

Print this out and put a cover note on it saying "I hope my daughter does not have vasculitis, as there could be legal ramificiations." (don't overthreaten or you invite problems)>

http://tinyurl.com/yke9zh9

Also print this with little notes typed and put on a page on the cover of each:

http://tinyurl.com/yf66ur3

Mayo clinic recognizes headache as a consequence of Lyme disease: http://tinyurl.com/yzcsolg

[b]CDC AGAIN recognizes headache as a symptom of LYme disease[/b] http://tinyurl.com/yfadz6p[b]

Post edited by: Bettyg, at: 12/06/2009 09:34 PM

Your story sounds very much like mine. I too took Levaquin and after taking it had all of those horrible symptoms you mentioned.

The good news is that you can get better. I had terrible pain and found that diet has a lot to do with it. One of the naturopaths I saw said that fibromyalgia and arthralgia pain can be helped with a alkaline diet like nuts and veggies. After the levaquin, I also noticed less pain when I'd avoid red meat and conversely, more pain after eating red meat. On the naturopath's advice, if you have to have meat, then organic turkey is the meat to eat. And like Cmany said, a gluten-free diet also helps.

What also helps me are enzymes. I used one called Neprinol which an alternative doctor told me works for fibromyalgia. Neprinol is pricey but helps break down fibrinogen in the blood. Since levaquin affects tendons, your body tries to repair itself and in the process, fibrinogen is formed which causes pain.

You might also want to try food grade diatomaceous earth which contains silica which also aids with collagen. I just started this because one of the side effects of levaquin for me was that my skin at the joints changed and I blame the quinolones for this.

Good wishes to you.

Lydia