Lyme support groups?

[bradb1989]

Hey,
I am a 24, my name is Brad. I am a recovering heroin addict early in sobriety but i also have chronic lyme disease. Does anyone know any support groups, because I dont know anyone who has both to talk to or even a just lyme support group. Any help would be apprreciated.

[suck2013]

I yes u know that was the first words out of my mouth , but we have to prove it..  hoping  MD will help & if not then I have to accept my son is a drug addict....but until then I will keep u posted..
Thank u

[JackieCalifornia]

Be sure to tell the lawyer all the medical stuff, because it may well help the court be kind, knowing that your son has medical issues potentially affecting his judgment and actions.  Seriously, this could really help.  

Your son is fortunate to have you there, and at some point he will realize it fully.  Look forward to that day, and keeping plowing ahead.  Keep us posted, and hang in there.  

Sending you all good wishes --

[suck2013]

I keep plugging away....
My son gets very irritated with me.....the doc in Chicago asked Ryan what brings him back & Ryan reply is::: don't know ..My mother drags me every where....
Had to get Ryan a lawyer today b/c  he is being charged with herion the night he OD in our house.... I didn't think that was possible .....if I wasn't to busy revivng him I would of tossed herion out...... since he didn't die he has charges.... I told lawyer where he has been for past 30days & told him about lyme..... Ryan like mom I don't have lyme....  ok Ryan ....when doc in MD tells me I'm crazy then ok but until then Ryan u have lyme ....19bands is lyme...CSF states lyme....  this is what docs tell Ryan so he now believes them......ugh

[JackieCalifornia]

Keep looking for a Lyme doc.  They are not all the same in their approaches, medical or otherwise.  I just searched for -- lyme chicago -- and got over TWO MILLION hits on google.  Even if 90% of them are posts by people in Chicago with a really good recipe for Key Lyme pie, that still leaves you with many options.  

My doc didn't take insurance either, but gave me a reasonably detailed statement when I paid, which I then submitted to insurance for reimbursement.  That is pretty common, and the insurance company never gave me *any* grief about the doc visits or the meds.  

I didn't have BCBS, but another large national 'brand', and they never gave me any trouble at all with reimbursement.  Lyme docs aren't dumb enough to plaster stuff all over the bill that would cause an insurance company to reject the bill as not reimbursable.  Many of us pay and get reimbursed.

Lyme docs often don't advertise where they are or what types of medicine they practice, just to avoid getting hassled by those who don't believe Lyme is serious.  I would start with ILADS as stated above, and also search online as I just did.  

Also if you get connected with a local Lyme group, they can give you leads and also help you figure your way to good docs.  It doesn't sound like you have found a lot of local support in finding a doc, but they are out there.  Online search is the way to go, for both support groups who are good sources of docs and for finding docs directly.  Also try ILADS again -- they don't send a list of all their docs, just a few, and if you go back and say the ones you got didn't work, they can send you more.

I would guess (and I'm NOT medically trained) that the Lyme doc and the addiction doc will have to coordinate what they do, but see what docs you find and you'll figure it out.  You're very strong to do all this for your son, and while it's difficult, you are imo doing good things for your son.  Take care of yourself, too, okay?  Keep us posted.  Best wishes --

[suck2013]

& the LLMD only takes cash....we r cashed out.....  if it wasn't for my husbands bc/bs insurance we would of already lost everything.....  ps  we do not live beyond our means either.... we have no car pymts.. My husband drives a 1991 Bonneville which the brakes went out & he spent 3 days fixing it ..... no body is allowed in his car or allowed to drive it.......
I'm trying to do everything for Ryan but my hands tied ..... I wish I was a lyme doc!    

[suck2013]

Ryan spent 5 days in ICU in Chicago IL 8/10/13.......they found his dx after IN ignored his cries .... 5 ER Visits, othopedic surgeon, neurologist, & MD....then last ER visit I went off on everybody & they finally admitted me & the next day sent him to Chicago via ambulance.....his blood test showed no drugs except Norco b/c that's what they would give for his neck pain....3weeks of antibiotics follow up appointments call backs they said no Need to c him even now in my desperation they said no Need to c him...he a drug addict not a lyme or...
I did have an appointment that took 9 months to get to doc in Zionsville IN 8/14 but Ryan OD the night before ....so desperate rehab..
Now he home...rehab drugs that only sedate him...(i so mad).. My soonest appointment is Maryland ...I have plane tickets.... I don't know how I'm going to survive this.... ..

[JackieCalifornia]

Have you checked with ILADS for a referral?  Because docs register with ILADS to be on their referral list, they may know more about each doc's inclinations and subspecialties, such as addiction.

It can take a while to get a first appointment with an LLMD who is in demand, so you might want to book an appointment soon, in anticipation of when your son will be ready for the appointment.  

                    -- contact  [at]   ILADS   [dot]   org --

is the email for referrals, and I would include a note that you are particularly in need of an LLMD who is knowledgeable about addiction.  

You say above:  "everyone just wants to treat drug problem  & not lyme."  That is a common problem with docs about all kinds of aspects of Lyme -- too many MDs seem not to see the big picture and only focus on one narrow aspect of it, when what is needed is a view of the patient as a whole, to account for any and all co-infections and ailments the patient has from the 'Lyme' ticks, in addition to Lyme.  A good Lyme doc will understand that and take a broad view of the overall situation.    

I just searched for -- Chicago Lyme -- and found quite a few promising leads.  Your son is fortunate to have you watching out for him.  Please let us know how we can help with any knowledge or experience we collectively might have --  tho in my experience the single most important aspect of kicking Lyme is finding the right doc.    

Keep us posted if you will -- sending you all good wishes --

[suck2013]

Thank u jackie..
The rehab in CA which was 50,000.00 for 30 days is very upset with me for bringing my son home....I was told by his case manager I will be burying my son....they were sedating my kid ....  if I don't get someone to help my son with lyme yes I will be burying my kid.... he will be getting psych help along with substance abuse help starting Monday..... I just have to keep him safe until Nov 19..... I have tried docs in indiana & they don't believe he needs lyme help..... I know my kid .... he has that look ...the lights r on but nobody home...is very hard / frustrating to watch my son slowly slip away....
Kim

[JackieCalifornia]

fwiw, I just searched online for

             -- lyme disease heroin --

and found quite a list of possibilities to check out.

The walls which too many in the medical profession build around Lyme are indeed bad news.  Lyme affects the whole body and many of its systems and functions, including endocrine and neurological.  The approach of seeing a Lyme doc who understand addiction may indeed be more effective than going into rehab with docs who don't understand Lyme.

I don't know anyone who has seen Dr A, but he has a good reputation, as I recall.  Sending you all good wishes -- please let us know how things go.

[suck2013]

Brad
My son is 19 he will be leaving CA tomorrow, I put him in a rehab for one month of herion use.... My son has chronic lyme.   I figured he by bit 9/2010  but dx 8/13.......    Our problems with law & Ryan r getting worse... I thought the rehab in CA would help us treat Ryan dx as a whole.... nope everyone just wants to treat drug problem  & not lyme...this needs to be treated together..since lyme has gone undetected for years Ryan needs more than 2 weeks of antibiotic but Indiana docs dont believe this & hmm they don't see a pattern happening either.....  we will be going to john hopkins university to c Dr. Paul A.   11/14...   that's if we make it...  I feel my son will OD again!   He OD 8/14 I found my son on bathroom floor at 2am with respiration of 6.  He was given Narcon twice before he reached hospital....  I never sleep I have been checking on my son nightly for years....  the docs tell my son he don't Have lyme he is just a drug addict....  so now my son says he don't have lyme & don't want to go to another doc..
Ticked off

[bradb1989]

Thanks for the feedback

[mojogal]

On Facebook, they have Lyme and addiction , just look under Lyme and all the groups will come up.

[Ephedra]

A support group for Lyme or a support group for heroin addiction?  It's unlikely that you will find both together in one.

This is a great support group we have here for Lyme!  There are a lot of them.