LLMD in Northern California & bite question

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Motoxchic00
New Member


Date Joined Sep 2009
Total Posts : 14
   Posted 9/29/2009 9:25 AM (GMT -6)   
Hi there. I am currently posting for my brother who is in pretty bad shape. He has been diagnosed with Lyme from an alternative dr. He has been 6w on the homeopathic treatment and just received his Igenex (western blot) test back negative. He was putting SO much weight on this test, so for it to come back negative was a huge blow. He is battling some depression and been yanked around by his MD for months. He is currently on xanax just to cope with all of the unknowns. He is in constant pain which is also not helping matters.

Today he has an appt with a neurologist who supposedly is familiar with Lymes. I was wondering if anyone has any other resources in Northern CA for LLMD's?

Also, from the photos I have seen of Tick bites, it seems like a pretty obvious rash. He is a lineman for the phone company and is always out in the woods and very tick conscious. He never saw the tick or a bite mark. Is this possible? He is in such a bad mental state not having a definitive test to prove this is what he has. His mind goes to other chronic diseases like rheumatoid arthritis, etc. As his family we are pretty concerned of a nervous breakdown around the corner. We need to get him help soon.

Thanks for any advice or help!
My brother has been diagnosed with Lyme in 8/09. As his family we are struggling to find answers. His mental state is pretty fragile at the moment not being able to get a blood work diagnosis (western blot came back neg) and worried about his job (which is where he would have received the bite). Looking for a good LLMD in Northern CA and answers for long term disease management.

Post Edited (Motoxchic00) : 9/29/2009 4:24:09 PM (GMT-6)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 9/29/2009 10:33 AM (GMT -6)   
Hi Motoxchic!
Welcome to the forum!!! You are a very special sis for joining us for your brother!! Not enough of our families have a good enough understanding of what we are going through to be this involved! As for me - none of my family has the desire to help in this way!!!

I'm really sorry about your brothers health!! Although you have chosen the best place to get not only info on LD, but support & understanding as well!! If you have time (or if your brother is up to it) you should really check out the "newbies- check this out" thread.

It contains soooo much info & the mods here created this thread in order to help newbies to LD understand a lot of what may be going on!

Negative Lyme results are very common - unfortunately. It took a full year on very strong antibiotics before I tested positive. It's just the 'nature of the beast'.

Despite what many say about the evidence of a bite, only about 40% of those who are infected actually had the 'bullseye' rash. He may have had no rash at all or maybe a rash of unknown cause - these are actually more common.
Also, he could have been bit on the scalp or the back of his neck & not noticed.

I, personally, believe that there is so much misinformation being passed around that it's a wonder sometimes that we do get any help!! The absolute best thing your brother could do for himself is to go to a knowledgable LLMD. I would suggest (if you haven't already) going to CALDA's website.

This is the California Lyme Disease Assoc. website. There is a wealth of info there for any Lymie, and they have info on the LLMD's in Calif. You can still get info on LLMD's through sites like this one as well.

Have you or your brother gone over any of the symptom lists for LD? One that I like to refer people to is

www.anapsid.org/cnd/diagnosis/mastersymptoms.html

Unfortunately, if your brother has LD or other tick-borne illnesses, depression & anxiety is something most of us have to deal with. Very few people understand the amount of devastation to one's life once they have been infected - unless they have either chosen to really be there for someone who has LD or they themselves have experienced it.

My biggest suggestion for your brothers' situation would be to pursue knowledge about possible Lyme or other TBI's, as this (as apposed to RA) is curable most of the time.

Sorry if I am starting to ramble a bit - I am definitely in a long phase of "Lymie brain" right now!!

Feel free to ask any ?'s you may have, we have some very intelligent members here who are very knowledgable!!!

Good luck to both of you & welcome once again!!!
Trav
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


diaba
Regular Member


Date Joined Aug 2009
Total Posts : 175
   Posted 9/29/2009 11:44 AM (GMT -6)   
Hi, I'm in northern calif.(santa rosa), and go to a medical group:Gordon Medical Associates, they have several llmds there. They also have a website you can check out.

Take care, diana

Motoxchic00
New Member


Date Joined Sep 2009
Total Posts : 14
   Posted 9/29/2009 4:21 PM (GMT -6)   
Thanks for the replies.

Traveler - yes, he just went over a long checklist again last night and hit every sxs. Unfortunately he is supposed to be "staying away from the internet" right now until he can get his mental state settled. So we are trying to filter the research to him that is helpful for now. Eventually I will point him here so he can get plugged into a group. Wow, a FULL year to test +?! So far he is using a homeopathic treatment that is supposed to not have the side effects (as i am sure you are familiar with) of antibiotics. The dr he has been seeing which has been helpful is an Acupuncturist. His HMO MD is a joke when it comes to this. I think these forums can be immensely helpful, so I will be crawling thru here for info. BTW, what is TBI's?

Diana - thanks for the info, I will pass it to my bro, I know he is willing to travel wherever he needs to at this point. He is for the first time seeing a Dr. up here near Sacramento today that we are hoping to prove helpful. I wanted to have some backup resources and recommendations as well :)

I will check out the sites too!!

Thanks again!
My brother has been diagnosed with Lyme in 8/09. As his family we are struggling to find answers. His mental state is pretty fragile at the moment not being able to get a blood work diagnosis (western blot came back neg) and worried about his job (which is where he would have received the bite). Looking for a good LLMD in Northern CA and answers for long term disease management.


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 9/29/2009 4:51 PM (GMT -6)   
Hi Motoxchic!
Soo glad your brother is using a treatment for Lyme! If I could get in to see a homeopath, I would go that way in a heartbeat!! Acupuncture combined with Chinese herb therapy helped me more than anything else so far. Alas, that Doc is in S.D, Cal. & I live in the lower mid-west.

I do have the names of 4 Lyme Literate Practitioners in Cal. If you would drop me an email, I would be happy to give you those names & contact info. We have a policy here that we do not post this info. I got the info from the book - "Insights into Lyme Disease Treatment", if you would rather just get that info yourself.

You sounded as if you had done a lot of research on LD, so I'm sorry for assuming that you knew what a TBI is - Tick-borne illness.

Another tid-bit, pain from LD can be unreal. I have read where it is compared by LLMD's to be just as severe as things like RA. =( This is something I have had the 'pleasure' of living with for many, many yrs now. Needless to say, some days even hubby doesn't want me to do move around (Or have to listen to me!! Giggle!)

I know that you will find a great deal of help here, I have.

Sending lots of healing vibes & wishes that your brother will find not only health, but peace in his journey.
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


Motoxchic00
New Member


Date Joined Sep 2009
Total Posts : 14
   Posted 9/29/2009 4:54 PM (GMT -6)   
Thanks for the TBI...I should have guessed (usually pretty good at figuring those out), but oh well! LOL I will EM you for the info!

thanks :)
My brother has been diagnosed with Lyme in 8/09. As his family we are struggling to find answers. His mental state is pretty fragile at the moment not being able to get a blood work diagnosis (western blot came back neg) and worried about his job (which is where he would have received the bite). Looking for a good LLMD in Northern CA and answers for long term disease management.


Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 10/3/2009 12:09 PM (GMT -6)   
Hi Motoxchic00

I live in the SF Bay Area and see a LLD in Sacramento. There are also several women in my community who see a SF LLD. If you would like their names and contact information, let me know.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 10/3/2009 2:47 PM (GMT -6)   
Motoxchic00 - I think it's wonderful what you are doing to help your brother. I know taking care of a sick relative can be extremely difficult, but also can be extremely rewarding.... you are to be commended on helping your brother.... I think you are WONDERUL!!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
10/01- Igenex and CDC LD positive
Rx's: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
 

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