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12/13/2009 09:34 PM

Strange Symptoms

kensthfn
Posts: 3
New Member

Hello. I am new to this forum. My husband was diagnosed with Lyme about a year ago, after he was misdiagnosed. He took the Doxy but still never felt like his old self. He went to another doctor who said he was treated and he was now cured.Well I told him that wasn't true. I know a lot of people and even dogs who had problems after the first treatment. Now he has numbness and cold feeling on his entire right side, sometimes his right cheek goes dumb. I made him go to the ER.He got the same doctor who misdiagnosed him before. They did a MRI because he thought he might have MS. The MRI was clear. I kept telling him it's the Lyme and he needs Doxy. He said he does not believe Lyme is Chronic. I told him he was wrong and I know that it is. He told my husband to see a neurologist because he might have a mental illness. I know that's stupid! Has anyone had numbness on one side of their body? And is there a good doctor in the northern Va area?

Thanks for reading my long post.

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12/13/2009 09:40 PM
Bettyg
 
Posts: 32211
VIP Member
I'm an Advocate

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, Minoucat, & Connie Mc's SSDI, SSI, & LTD DISABILITY INFO GALORE

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

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.

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.

ken, i was not able to read anything above. could yu edit the entire thing into MANY short paragraphs and doublespace between each paragraph so we neuro folks will be able to comprehend and read. then hopefully we can assist you. big thanks Smile hugs


12/13/2009 09:40 PM
decembergal
decembergal  
Posts: 181
Member

Hello and welcome to the group.

There are good llmd (lyme literate doctors) in the Virginia area. If you send a private message to Jaime, cmany or bettyg let them know where you live and how far you are willing to travel and they will get a list of doctors to you.

It is great that you realized that your husband still needs treatment. I hope you are able to get him in quickly.

God Bless,

Kathy


12/13/2009 09:42 PM
kensthfn
Posts: 3
New Member

Thank you both for your help.

12/13/2009 10:45 PM
Tennesseemom7
Tennesseemom7  
Posts: 1050
Member

Hi,

I just wanted to let you know that I have a lot of tingling in different parts of my body....along with many other symptoms.

I have been in aggressive treatment for 4 months now with a LLMD after many missed diag. The best thing I did was getting tested through Igenex lab. It cost me 920.00 but it was the best money I have ever spent. Found out that I have Lyme, Babesia and Bartonella... Each one has different treatment and last week I started treating the Bartonella.

This is a crazy scary disease and most doctors will look at you and think your crazy, but a LLMD will understand everything. Please Pm one of the group leaders listed by Kathy and hopefully they will find you a great LLMD. I found mine through www.turnthecorner.org and he accepts insurance, which is wonderful.

Good luck to you and your husband is very lucky he has you fighting for him.

PS....don't let you husband take any steroids, by mouth or cream ever... That is what sent my Lyme in overdrive.

Brenda


12/14/2009 04:42 AM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

Yes this same thing happened to my daughter when she was living in FL and not yet diagnosed. They took her to ER only to tell her it was a panic attack. I get those and it wasnt that.

PM (private message) my daughter. She is Dharma on the leaders tab.(which can be found at the top of this page)


12/14/2009 09:39 AM
dharma79
dharma79  
Posts: 1180
VIP Member

Actually, Mom, they told me I had the flu and gave me penicillin. Dummies!...although they probably thought I was having a panic attack! LOL

I've had plenty of scary incidents of numbness and tingling...my ear went numb for over 3 weeks once.

It was explained to me that it was the Lyme messing around with my nerves...cranial nerves, especially when the face is involved. Lyme can effect anything it wants, anywhere, anytime.

I have to say I also had a clean MRI...doesn't mean much but I guess it is a good thing, right?

Most of us here can probably empathize with even the weirdest symptoms your hubby has.

A note of caution...

There is no hard core scientificly proven evidence YET, but there is a strong possibility that Lyme, like its cousin syphilis, can be sexually transmitted. It seems much easier, in anecdotal evidience, for a man to pass it to a woman. My fiance and I use protection in case this turns out to become cold hard scientific fact.

My point here is merely for your own protection...be aware of your own health and that of any children you share.

Again, I am not a doctor...just a fellow concerned citizen...Sideways


12/14/2009 11:35 AM
kensthfn
Posts: 3
New Member

Thanks for all your replies. I got a list of doctors from Turnthecorner.org. One is not far from us. I am going to get my husband to get on here tonight so he can better understand this disease.
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