This is topic What do you do? in forum Medical Questions at LymeNet Flash.


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Posted by James Marschner (Member # 13073) on :
 
What can you do if orals are "killing" you? You've been on them for 15 months with no progress.

Your LLMD says she's afraid to give you IV rocephin because of insurance companies.

You haven't been able to work due to intense sickness and horrible rage...so you have no money or insurance.

Your family doesn't believe in Lyme disease, and your girlfriend is trying to support you w/ $12.00/hr.?

I'm out of orals now, and can't afford to go back to CA to see my LLMD who won't give me anything but orals anyway.

I just broke my hand again out of frustration. Do I just sit here and get worse...or rob a bank?

I'm dangerously close to suicide again. The looney bin just takes away all my valium and vicodin and lets me suffer w/o antibiotics as well. 72 hours later they discharge me with no plan on getting better.

I really do think it's going to SAVE more pain than the suicide will CAUSE.

I'm getting crazier everyday. This world is awful.

Learning to live w/ this pain is NOT an option either. Either I get a cure , or I die.
 

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Posted by Vermont_Lymie (Member # 9780) on :
 
James,

I feel your pain. I am so sorry things are going this way.

Do not give up now. There is effective treatment, even if it means getting inexpensive oral abx like amoxy, or seeing a new llmd.

The craziness you feel is the lyme, not you. Please call the suicide hotline if you feel you might hurt yourself. The number is 1-800-SUICIDE or 1-800-784-2433.

Your girlfriend believes in you; forget your family for now. We believe in you too. This world is tough but you can make it.

James, I lost a friend today, and I can tell you for sure that life is precious. Hold onto it with all your strength.
 

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Posted by Vermont_Lymie (Member # 9780) on :
 
Up for more replies
 

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Posted by Melanie Reber (Member # 3707) on :
 
Hi James,

What orals have you been on? Have you been diagnosed or treated for co-infections?

CA has a law that protects physicians, so I am surprised to hear that your current doc is hesitant to prescribe IV if needed.

Perhaps it is time to try another approach with another physician?
 

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Posted by James Marschner (Member # 13073) on :
 
My God, Psych herxes are really bad.
 

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Posted by adamm (Member # 11910) on :
 
Seriously, man--I know what you're going through; I've been there

many times, and i can tell you that you have an entire world to live

for. Your girlfriend is doing something absolutely beautiful and

heroic, and truly, that kind of stuff is all that matters in life.

Now more than ever, you must know the ecstatic witness you can to bear

to the awe of her love.

That's the truth of this world, and I guarantee you that if you just hang in

there, you'll come to realize that it's something you can never

throw away.


You'll get better--it may require finding a new LLMD or

investing more in alternative treatment modalities than in

antibiotics, but i know that you have what you need

to get to the other side.


Feel free to get in touch with any of us personally if

there's anything we can do for you.
 

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Posted by charlie (Member # 25) on :
 
James please tell us what orals you've been taking...there's a significant subset of us who get no benefit whatever out of the tetracycline family....tetra or doxy either.

You may be able to get some improvement if you tailor the drugs to yourself. I had to do that and it meant going to Mexico to get what I needed.

Charlie
 

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Posted by James Marschner (Member # 13073) on :
 
Part of the problem is that I had to "flea" to Nevada(Where opiate painrelivers are used.), so traveling back to California to see my LLMD is expensive.

And she said outright that insurance will only cover about 2 months of treatment, and that won't be enough. Beyond that it will draw attention to what its for. My IGG western had 4 +'s and 2-IND's. So it was "officially negative.

I've been circumventing the system lately. It is expensive though. Sux either way.
 

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Posted by James Marschner (Member # 13073) on :
 
The Orals I'm taking are Amoxicillin and plaquenil right now,

Amox., Zithromax; before that Rifampin, Zithromax and omnicef.
 

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Posted by bettyg (Member # 6147) on :
 
james,

hang in there; times get touch for everyone; that's why they come here to rant, rave, and share their inner-most thoughts to those WALKING IN THEIR SHOES!


some have suggestions; others like me, just reach out and say, BETTER YEARS ARE AHEAD ... we just need to get thru the awful days and months to read 1 year then more years to come.


thank you god that james has a special girlfriend who BELIEVES in him and helps as much as necessary.
 

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Posted by James Marschner (Member # 13073) on :
 
Thank you all for your kindess. Your responses have been helpful.

P.S. Does anyone know if a fractured fifth metacarpal can be ace-bandaged for 4-6 weeks and be ok? The Bone you "karate-chop" with.

Do they even put a cast on it?
 

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Posted by Melanie Reber (Member # 3707) on :
 
I don't know abut your hand James, but it does seem to me as if you need more meds for Bartonella.

Bart is known to cause Lyme rage, frustration, desperation, unpredictable behavior and a general feeling of helplessness.

Yes, it can certainly mess with your psyche, big time.

This is why I inquired re: co-infections.

What you are going through is NOT all that uncommon, unfortunately. The good news is that it does pass.
 

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Posted by hcconn22 (Member # 5263) on :
 
It's very possible that you were on an ineffective treatment. You should see some progress- at least that has been my experience.

Have you been tested for co-infections or do you know if certain co-infections are present in the area where you got your tick bite.

Some people mail order abx from India, NZ and other places. There actually much cheaper and in many cases less that paying for insurance.

What may I ask are you taking now for abx and what else have you been on.
 

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Posted by brf (Member # 8748) on :
 
Hi James,

Vermont Lymie said it well with:

The craziness you feel is the lyme, not you.

Good advice that sometimes we need to keep telling ourselves in order to help keep things in perspective.

Many of us have been where you are - and certainly more than once. I've been ill & in pain now for much too long. Two years of orals only managed to bring minimal improvement in some symptoms but no relief in pain, exhaustion or in overall functioning. I've been homebound and bedbound for years. I was so elated to finally get a diagnosis & start treatment only to sink into discouragement while continually waiting for some meaningful improvement that never came.

I'm currently experimenting with cat's claw (Prima Una de Gato by Allergy Research right now) & have noticed after each herx, a small but noticeable lessening of pain. It finally is giving me some glimmer of hope.

Please seriously consider a different physician or a different approach.

My heart goes out to you James.

Blessings,
bf
 

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Posted by Pammy (Member # 15695) on :
 
Maybe this is a dumb question, but if you are having

an "emotional" herx, aren't the antibiotics working?

I've heard of people having to be on them for years,

before they feel "cured" or can function normally.

Can your LLMD phone in a prescription to a pharmacy

near you? My LLMD offers me phone appts as well

to save me the drive to his office for every appt.

I haven't been dealing with this very long so I'm

sorry if these suggestions don't make sense.


Hang in there and keep reading posts on Lymenet.

It really helps me, especially at night when I

feel so incredibly alone and all my symptoms are

at their worst.
 

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Posted by brf (Member # 8748) on :
 
I'm no doctor James, but I would urge you to seek some medical attention for your hand.

bf
 

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Posted by zil (Member # 12048) on :
 
if there is much displacement with the 5th metacarpal---they call it a boxers fracture, they run a pin up it to hold it in place. You need an x-ray to tell for sure. You might try a long splint like, half a 12" ruler and use it with an ace and see how it does.

Is rocephin out there you can get and not go thru your insurance--cheap? I'd look for alternative IV drugs they may approve---claforan, vancomycin etc.. I'm on IV rocephin now and have been at this game for over a year. I've not had any problem yet with my ins company. Maybe Wal-mart would have it in generic form for 4$. I hope you didn't fx the hand and get hold of some antibiotics. Some on this board have had good luck with IM Bicillin.
 

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Posted by lymielauren28 (Member # 13742) on :
 
Hey James,

I'm so sorry that you're going through this, and I want you to know that I know exactly where you're at - many of us here do, unfortunately.

I have literally felt so crazy that I was jumping out of my own skin. I called my mom and told her that if I didn't get some help that I was going to really end up hurting myself.

That was three and a half months ago James. With the right treatment my psych issues are almost gone. I still get depressed, I still have anger, but it's manageable and continues to get better.

Please hang in there!!! This is not you James and you know it! It's Lyme and you've got to tough it out! We all care about you. All the options other people gave you are good...find a new LLMD, order meds from Mexico...do whatever you have to do to get better.

I'm sending love and prayers your way.

Lauren
 

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Posted by sammy1 (Member # 12754) on :
 
buy a rife machine and start salt/c. get off the abx. they only control the symptoms and most likely won't cure you. i am speaking from experience. i have been in your shoes and really feel for you. please look into other options besides abx. some people have success with them, but people who have been infected for many years, like myself, they aren't effective.

move on. reseach lymestrategies. go out and but sea salt and vit c and order a doug coil machine. i am having great days now, becuase i took action and stopped taking abx. LLMDs make money when they prescribe abx.

please know that there are other options out there. email me privately so i can help. sending you hugs and healing wishes.

sammy1
 

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Posted by Vermont_Lymie (Member # 9780) on :
 
James,

I hope you get your hand looked at by a doctor!

Do you live near SF? I do not know CA geography well. I ask because I read this year that San Francisco is the first american city to have medical coverage for all -- regardless of ability to pay. An admirable program and I hope it might help you get medical help now and in the future.

By the way, be careful if trying Salt/C. It has proven harmful for some who have tried it. Please do a thorough search and read widely before trying any potentially dangerous alternatives like Salt/C.

Bicillin (injections) were very helpful for me, perhaps even better than high-dose amoxy, which is helpful too.
 

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Posted by AliG (Member # 9734) on :
 
I agree with Melanie on suspecting Bartonella or BLO.

I believe that Dr.Zhang's HH capsule ( www.sinomed.com )is supposed to be helpful in Txing Bartonella. Perhaps you could add that in for now. ??

I know that if you buy his book on Lyme, they'll send you a questionnaire about symptoms, etc. You can schedule a free 15-minute consultation with him AFTER reading the book & completing the questionnaire.

You might want to talk to your LLMD about addressing BLO or finding one who Txs co-infections if that one doesn't.

I don't think you can really get rid of the Lyme when co-infections like Bart & Babesia are active. They would definitely need to be addressed, if they have not been already.

I have just realized that my frustration intolerance, irritability, depression, rage etc has become annoyingly elevated again.

I had Txd BLO with 30 days of Levaquin & I really don't believe it was enough. I had much calmer while on the Levaquin.

I forgot to address this with my LLMD at my last visit.

I'm going to be off Rocephin & only on Biaxin & Diflucan in two weeks. I think I'll give the HH a shot and see if it helps me with these symptoms.

I'm so sorry you're going through this.


Ali


I just remembered that Calcium & Magnesium can have a calming effect. I think maybe I'll take some of that.
OOPS! NO calcium supp while on Rocephin!! (glad I caught myself) I think I'll just try adding some Magnesium and see what that does.
 

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Posted by Spiderlily (Member # 15859) on :
 

quote:

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Originally posted by James Marschner:

P.S. Does anyone know if a fractured fifth metacarpal can be ace-bandaged for 4-6 weeks and be ok? The Bone you "karate-chop" with.

Do they even put a cast on it?

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quote:

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Originally posted by sammy1:
buy a rife machine

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