posted
Post number 500 -- reason to celebrate, but also time to take a short break from LymeNet.
I am trying to start a home-based business which just can't wait any longer after 4 years with no income. 401K long gone, disability settlement spent even before it was received, credit cards maxed out, no assets of any value left to sell, extended family resources almost exhausted -- SO it is time.
I talked one of the credit card companies into a small 30 day temporary emergency loan for medical purposes -- It's time to sink or swim.
Hubby needs IV meds according to LLMD and it's now up to me to get the money from somewhere. And to keep a roof over our heads and food in our mouths etc.
I know many of you are in similar financial straits.
Just wanted to post this so if anyone got to wondering they would know what had happened to me. Will be responding to those who I owe emails to in the next day or two and then all my time and energy need to be focused elsewhere for now.
Hope to be back soon with good news. I am really going to miss you guys.
Sending rainbow thoughts your way.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Bea -- I'm stunned, when I let myself think about it, at the level of financial damage this disease wreaks upon us.
Best of luck. From what I know of you (what a strangely intimate-yet-depersonalized world cyberspace is!) I'm sure you will succeed in whatever you do. I do so wish you did not have to deal with such a tremendous level of stress while you do it. Drop by when you need a hug; we'll all be rooting for you.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
We will miss you and your 5 star plus wealth of TBD knowledge.
Go and do what is neeeded and I wish you success.
Has IM Bicillin been considered? Cost is about $40 per dose.
Janet Thomas
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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bettyg
Unregistered
posted
Bea, yes, we will miss the wisdom you have brought to the board and your "warm fuzzy feelings" you exude.
My best to you on getting your home-business goig. It WILL be successful because you are a complete success!
What type of business? Perhaps anyone here may be able to use your special talents? @!
You will certainly be missed here & know that you have only our best thoughts & prayers for the health & wealth of you & your family.
When you get your business up & running, email me if you think I might be interested in buying stuff.
We're not rich - and in fact, we're starting to have to spend MORE for medical now - but if there's something I can do to help you - email, and I will if I can!
Blessings,
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Good luck! I hope you make a ton of money!
All the best, Heather
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Bea,
I've valued your insights since I started coming to Lymenet. It's also been synchronistic that your husband and I have both shared some debilitating symptoms of this horrible disease.
I'm going to miss you!
Best success to you on your business start-up and continued healing for your husband.
See you back here soon, I hope!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Bea,
I've valued your insights since I started coming to Lymenet. It's also been synchronistic that your husband and I have both shared some debilitating symptoms of this horrible disease.
I'm going to miss you!
Best success to you on your business start-up and continued healing for your husband.
See you back here soon, I hope!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
I want to thank everyone for their kind comments and encouragement.
As if I didn't already have enough incentive to work hard and be successful, hubby had a somewhat discouraging appt with his new primary care doctor yesterday.
This was our 2nd appt and remember that this doctor is 50 miles away in a large city in another state as the local MD was unwilling to accept him as a patient. PCP indicated she feels unqualified to coordinate hubby's treatment plan and does not feel comfortable with us "selfdirecting" his medical care. We knew she wasn't really that experienced with Lyme, but had thought she either knew more than she did or would be willing to learn.
Is hubby worse than he was 2 months ago? -- I honestly don't know. Is his disease progressing? -- again I don't know. He is not falling down, he can even walk a straight line reasonably well and he even takes short walks 4 or 5 times a week -- actually found out he has been walking 1 to 2 miles (I have to let him try to do some things on his own and don't walk with him). There have been many times during the last 4 1/2 years he couldn't do these things.
On the other hand she indicated his "claw hand" is not due to muscle spasms and wants him to wear a splint for this. This is a relatively new symptom -- since the Rifampin actually.
The brain MRI I requested has a diagnosis of neurological deterioration and not Lyme disease. That definitely did not sit well with hubby. Will have this done in a couple of weeks and then see the PCP again in 1 month.
It has been 8 months since the last brain MRI. PCP indicated that if there are any new brain lesions or changes on the MRI she wants him to see another LLMD in her state -- we would prefer to stick with current LLMD in Missouri but will deal with this next month.
On the way home in the car hubby either passed out and had a "seizure" or went to sleep and had a "seizure" -- don't know which for sure. This is not new, but it hadn't happened in the car for quite a while. Riding in the car for more than 30 minutes has definitely become a problem again but at least this time he wasn't heaving and trying to throw up as well. And he wasn't really confused afterward -- just tired.
Actually his thinking and moods are both pretty good but I know that doesn't mean there isn't progressive neurological damage. But how do you measure these things when the symptoms are continually changing?
I'm kind of stuck here in the middle of a big dilemma irregardless of the financial constraints. The LLMD's philosophy is "treat the illness not the symptoms". Makes sense in theory, but the reality is hubby says the symptoms are overwhelming (myoclonus drives him crazy ...). And then there is the PCP who doesn't want to prescribe any new meds or get involved.
It looks like if I can scrape some money together it will be back to the drawing board to find a new PCP who can at least make the effort to talk to hubby's current LLMD.
At least this doctor can't write in her office notes that patient has a laissez faire attitude (means laid back and not involved) as one psychologist did.
It is really discouraging when doctors seem threatened or upset when the patient has an opinion or tries to have a reasonably intelligent discussion about their own treatment.
It sure isn't Steve's fault if he has already had all the tests done that the doctor normally would order (usually multiple times) and has had less than spectacular results from various treatments such as hormone balancing or various detoxification techniques. He can't make his body respond to the antibiotics especially when no one can tell him which symptom is caused by which infection. It is not his fault if he is a complex patient or if he has "rare" drug side effects.
Enough already. I've got to get back to work. Just needed to get this off my chest.
Thanks for listening.
At this point nothing would surprise me and if the radiologist doesn't believe in Lyme we could easily end up with another MRI (like all the hospital ones) which says that the brain lesions are "within normal limits for his age" or something similar. Or then again they could say they are due to migraines (which he doesn't have). This has happened before also.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
Dear Bea,
Wishing you the very best in your new business. I'm rooting for you and look forward to hearing about the adventure. Take good care!!
Healing smiles......lightfoot
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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