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Author Topic: Help needed ASAP
MaryinVT
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I need some guidance for my wife ASAP. I am definitely not one to raise the red flag unnecessarily (and unfortunately even when necessary). I am writing to ask for help regarding my wife's chronic Lyme. She has had undiagnosed for about 8 years, and in the past 3-4 years, she has declined, including increased pain throughout her body, and neurological manifestations. Over the past few years, we both have learned a lot about Lyme, so are not newbies. At her last appointment with her LLMD, she was advised that if nothing in her treatment changes, she has only 2-3 months left to live.

Physically: She has never been one to complain (``trooper''), but recently she is describing her pain as being 8-10 on a subjective scale, every day. As a result, she is not getting much sleep at all, averaging only 3-4 hours per night. She is taking opiates, without much effect. She was given morphine, which did even less for her. She has extreme pain in her teeth and gums for which no one has been able to help. She is seeing a dentist this Friday for a consult on taking them all (or at least most) out. Because of the tooth pain, she is not eating. Her total intake is about 800 calories daily. She has lost a lot of weight in the past 3-5 months. She is 5'8'' and her weight is now down to about 110 lbs from an average of 135-145 lbs. Years ago, when she learned of this illness, she made me promise not to let her die in pain. I am not living up to that promise. She is talking about ending her life. She doesn't want to go to the hospital because of her compromised immune system. I don't know what to do. Can anyone PM me recommended pain management doctors in Vermont/New England/Mid Atlantic regions?

Mentally: She is struggling with extreme confusion, memory lapses. Also, for example, when she is eating pudding (because she cannot chew anything), she will lean over to the bowl, and freeze for extended lengths of time, anywhere from 30 seconds to 5 minutes, similar to an extreme dopamine deficiency, or even a blackout. When I make a noise or ``awaken her,'' she will insist that she was thinking about something, and not to bother her. She doesn't have a psychiatrist.

Last week she shaved off most of her hair, and is starting to gather her valuables for the children to receive. She may have accepted her condition, but I know she has not been getting effective care. A big part of me is really ****ed off. Her doctor said if her treatment doesn't change, she will die soon, as if he is starting to put some distance between her condition and HIS treatment. If that is not a message saying she is on his ``B'' list, I don't know what is. On top of that, he will be out of the office beginning this Friday, November 20th, until after the New Year.

I know this is an urgent request. I need to find her a LLMD within driving distance of central Vermont immediately. I can call/email some of the doctors on the list I received, but I cannot prioritize them. There are other life complications, such as me being out of work right now (network engineer), mortgage defaulted, can't pay bills, etc. etc. etc. so we cannot afford to fly. If we can sell the house quickly, we would have some money to try stem-cell treatment. Does anyone have experience using embryonic stem cells? I know of a doctor in India using this treatment with allegedly a high cure rate (NuTech Mediworld in New Delhi).

Thanks for listening, and sending whatever info you think will help.

John

Posts: 23 | From Vermont | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
soleil16
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John, I'm sorry that I can't answer any of your questions, but please know that you and Mary are in my prayers. I hope you get some good suggestions here and life improves for you both.
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sparkle7
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Wow. That's so sad... I hope you can find a way to work this out. I don't think doctors have the right to say who will live & who will die.

Have you tried any alternative protocols? In my case, I was first told I had fibromyalgia & then 9 years later - I was told that I really had Lyme. I don't think I had either... I think I may have had this newly discovered XMRV (retrovirus). It's too soon to tell. I'm going to wait a bit to hear more about it.

Anyway, what I'm saying is maybe you have been given an incorrect diagnosis as to what is your wife's condition. Stem cells seem really good but you have to be careful. I'm sure there are many bogus clinics waiting to fleece people.

There are thing you can do with alternative medicine to prepare the body for stem cell treatment - such as detox & get the intestinal tract in good shape.

In my case, I decided to stop all of the drugs to see what would happen. Guess what? I felt exactly the same without the drugs. In some cases, I think the drugs can make people worse than just having the illness. The side effects of the drugs can be the same as the symptoms of the illness, too.

It's a personal decision, though. I just hope you can all get through this. My heart goes out to you.

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Kathryn
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Hi John,

I'm sorry you are in such a hard situation. I've been reading the following blog for the last year or so...

First read this enty:

http://lymemd.blogspot.com/2009/02/today-i-cried.html

Then this one:
http://lymemd.blogspot.com/2009/03/tear-of-joy.html

This might give you hope for your wife. You can ask for someone to Private Msg you the doctor's contact info in the Find a Doctor's section.

Will be thinking of you and your wife.

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sixgoofykids
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Wow, I am so sorry to hear. I don't have the LLMD list, you might want to post in seeking doctors also so someone can send that list to you.

How did the LLMD suggest changing her treatment since he said if nothing changes she will die? Were there any changes made?

Here is a blog of someone in India now - http://www.monicasindiaadventure.blogspot.com/

My heart and prayers go out to you and your wife.

--------------------
sixgoofykids.blogspot.com

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JamesNYC
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John,

God, that's awful.

What does the Dr say she will die from? What is going to fail that will lead to death?

Have other neurological problems and diseases been ruled out?

LLMDs are great with lyme, but with as with other Drs, often see all sx through a prism of lyme.

quote:
Her doctor said if her treatment doesn't change, she will die soon, as if he is starting to put some distance between her condition and HIS treatment.
I don't understand what you're saying here. Is he saying that HIS treatment isn't working and you should go elsewhere? Or is he saying that she ISN'T following his treatment?

I hope we can help you!

James

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lou
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Have you only gone to one lyme doctor? What treatment has she received. It is hard to know what to say without any background info on her treatment so far. Has she ever been on IV? How would you pay for expensive treatments, including stem cells if your mortgage is in default?

Seems like she should be doing better if she has been on an aggressive treatment plan that considered coinfections too. Maybe I am wrong, but it does not sound like optimal treatment has been tried.

My impression of stem cells is that it might help bring back some function, but it will not stop an infection. Which means you would still have to treat TBDs.

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sparkle7
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Stem cells have been used to stop AIDS... So, it's possible they could stop an infection.

Stem Cells Cut AIDS Virus in Patient, Ending Need for Drugs

http://www.bloomberg.com/apps/news?pid=20601124&refer=home&sid=ac9.rZCRCs8Y

Bloomberg news - not woo-woo stuff.

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randibear
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i am so sorry to hear your story. i will pray for both you and your wife.

it concerns me that your doctor is so, well, negative, but then i don't know what he does.

i would suggest going alternative right now. it couldn't hurt. perhaps the buhner or cowden protcol. they're not that expensive and you might see some improvement.

have your read singleton's book on lyme? i would get that also it recommends a lot of supplements. and buhner has one also.

i don't know what treatment she has been on, but would you mind posting what drugs and dosages she has taken. it might give us a place to start.

i have some of the buhner herbs if you are interested.

--------------------
do not look back when the only course is forward

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lou
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Interesting, sparkle, but this was one special case in AIDS:

"after getting a transplant of stem cells from a donor with a rare gene variant known to resist the deadly disease. The transplant also cured his leukemia, researchers reported."

My statement about stem cells and lyme was based on a lyme patient who got better with stem cell treatment, but still needed abx.

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purplemom
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John,

I would consider going to a hospital. Even though they may not be as lyme literate as you like they may be able to help with other things going on.

I did PM you. I'm sorry I did not have a good pain recommendation. Do you have a local lyme support group? I know our area leader knows alot of the docs around and makes referrals.

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MaryinVT
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quote:
Originally posted by lou:
Have you only gone to one lyme doctor? What treatment has she received. It is hard to know what to say without any background info on her treatment so far. Has she ever been on IV? How would you pay for expensive treatments, including stem cells if your mortgage is in default?

Seems like she should be doing better if she has been on an aggressive treatment plan that considered coinfections too. Maybe I am wrong, but it does not sound like optimal treatment has been tried.

My impression of stem cells is that it might help bring back some function, but it will not stop an infection. Which means you would still have to treat TBDs.


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MaryinVT
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James,

She is following the protocol. She interprets the comment as a threat, like, "Snap out of it." I didn't know he could give such a prognosis. No details (organs, ...). She does have lesions on her brain from an MRI done a while ago. I am wondering how LL he really is. No compassion. My daughter also has Lyme, and he is treating her more aggressively. I think he is just focusing on younger pts. I take it mean for her to go see someone else. We hvae an appt to see him tomorrow afternoon, and are writing a list of questions/comments. Any additions anyone can think of?

Thank you,
John

quote:
Originally posted by JamesNYC:
John,

God, that's awful.

What does the Dr say she will die from? What is going to fail that will lead to death?

Have other neurological problems and diseases been ruled out?

LLMDs are great with lyme, but with as with other Drs, often see all sx through a prism of lyme.

quote:
Her doctor said if her treatment doesn't change, she will die soon, as if he is starting to put some distance between her condition and HIS treatment.
I don't understand what you're saying here. Is he saying that HIS treatment isn't working and you should go elsewhere? Or is he saying that she ISN'T following his treatment?

I hope we can help you!

James


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D Bergy
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Rife Machine.

It is the the only treatment we are using presently, and has been our main treatment all along, with a few breaks to try some other methods.

Since you have already exhausted most other options, it may be worth a shot. Although I am skeptical if someone that ill can handle the die off. It would have to be handled very carefully.

Dan

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glm1111
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John,

I am so sorry to hear that your wife is so sick. I was in very bad shape about 7-8 yrs ago and was also told by my LLMD that I could die. I was given very aggressive tx of oral antibiotics for 4 yrs including 6 mos of IV Rocephin.

I was also on morphine. What turned things around for me was treating with herbal antiparasitics and salt/c.

Lyme disease has a MAJOR component of parasites and worms. I discovered the web site

www.lymephotos.com

when I joined lymenet. EXACTLY what is pictured in the photos is every thing that poured out of me. It took 6 mos of antiparasitic herbs and salt/c (se salt) for these pathogens to let go.

Willy Burgdorfer found adult Filarial Worms in the ticks he dissected, but it has been pretty much been ignored.

I hope this helps give you some insight and if you do a search on here by typing parasites and lyme and salt/c you will find lots of info. Also type in Filarial worms. A lot of LLMDs are not aware of this co-infection,

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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MaryinVT
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quote:
Originally posted by MaryinVT:
quote:
Originally posted by lou:
Have you only gone to one lyme doctor? What treatment has she received. It is hard to know what to say without any background info on her treatment so far. Has she ever been on IV? How would you pay for expensive treatments, including stem cells if your mortgage is in default?

Seems like she should be doing better if she has been on an aggressive treatment plan that considered coinfections too. Maybe I am wrong, but it does not sound like optimal treatment has been tried.

My impression of stem cells is that it might help bring back some function, but it will not stop an infection. Which means you would still have to treat TBDs.


Lou,

She accompanied my daughter who is seeing Dr. H, but was not impressed. Personally, I like his approach.

Never IV. This doc said if things don't improve soon, he will start her on IV. That was about 1.5 years ago. She is simply not on his radar. The only way I could pay for stem cell xplants is to sell the house quickly. We do have some equity in it, and it is not in foreclosure (yet). I'm working with the mortgager for a loan mod, which has been going on for over a year without a decision. One person said don't pay the mortgage the mod load is finalized. The next rep on the phone said you have to! I said the reason I am applying for a loan mod is because I can't pay the amount in the first place.

Yes, sub-optimal.

John

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MaryinVT
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quote:
Originally posted by sixgoofykids:
Wow, I am so sorry to hear. I don't have the LLMD list, you might want to post in seeking doctors also so someone can send that list to you.

How did the LLMD suggest changing her treatment since he said if nothing changes she will die? Were there any changes made?

Here is a blog of someone in India now - http://www.monicasindiaadventure.blogspot.com/

My heart and prayers go out to you and your wife.

There have been changes, but small steps, and I believe too cautious, creating this situation. He didn't suggest any changes, beyond saying "You are wasting away, Mary." Like a child being scolded. She told me that hurt. In the meeting tomorrow, she will let him have it.

Yes, Monica form the site went to the same doc in India.

Thanks,
John

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sparkle7
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lou- it may be one case but it sets a precedent. It is possible to get well. I'm sure there are people who could donate stem cells who have immunities to Lyme, etc. for people with that issue.

It's pretty well known about the people who have been immune to AIDS. I saw a show on PBS awhile back about it. It's a genetic thing.

----

John - I don't think I'd continue with such a rude doctor. Is there any way possible to find another doctor? After all, you pay his salary.

PS _ I agree with Gael about the parasites. It's not easy to go through a parasite cleanse, though.

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MaryinVT
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quote:
Originally posted by sparkle7:
Wow. That's so sad... I hope you can find a way to work this out. I don't think doctors have the right to say who will live & who will die.

Have you tried any alternative protocols? In my case, I was first told I had fibromyalgia & then 9 years later - I was told that I really had Lyme. I don't think I had either... I think I may have had this newly discovered XMRV (retrovirus). It's too soon to tell. I'm going to wait a bit to hear more about it.

Anyway, what I'm saying is maybe you have been given an incorrect diagnosis as to what is your wife's condition. Stem cells seem really good but you have to be careful. I'm sure there are many bogus clinics waiting to fleece people.

There are thing you can do with alternative medicine to prepare the body for stem cell treatment - such as detox & get the intestinal tract in good shape.

In my case, I decided to stop all of the drugs to see what would happen. Guess what? I felt exactly the same without the drugs. In some cases, I think the drugs can make people worse than just having the illness. The side effects of the drugs can be the same as the symptoms of the illness, too.

It's a personal decision, though. I just hope you can all get through this. My heart goes out to you.

I believe the dx is correct, both symptomatically and from MRIs (lesions).

She has tried:

Rifing (so-so, very temporary pain relief)

Flagyl

Bicillin IM: not much imporvement. Shots very painful, got bumps under skin at shot site.

Azithromycin
Now on minocycline. Due to teeth problems, dentist suggested increasing dosage from 1 pill 2x/week to 14 pills/week. He complied. Why so low to begin with? She is losing ground, and he knows it. He told her.

Rife: Ok, but temporary pain relief.

Colloidal silver: One of the best yet. From DK in Maine. Instant relief from pain for about 1 hour.

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JamesNYC
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John,

Please let us know what happens tomorrow and what the Dr has to say. I'm curious to know WHY if he believes she's wasting away, and thinks she's going to die with his treatments, that he has NOT referred you elsewhere for a different perspective.

I mean, if he can see the treatment failing after all this time, and doesn't know what to do with her, why wouldn't he have her go elsewhere?

I would think if he's talking death here, he should be demanding that she do IV. What would be more of a last resort situation?

Ask the Dr what alternative he suggests to giving up hope?

I wish you good luck tomorrow.

James

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MaryinVT
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quote:
Originally posted by MaryinVT:
quote:
Originally posted by sparkle7:
Wow. That's so sad... I hope you can find a way to work this out. I don't think doctors have the right to say who will live & who will die.

Have you tried any alternative protocols? In my case, I was first told I had fibromyalgia & then 9 years later - I was told that I really had Lyme. I don't think I had either... I think I may have had this newly discovered XMRV (retrovirus). It's too soon to tell. I'm going to wait a bit to hear more about it.

Anyway, what I'm saying is maybe you have been given an incorrect diagnosis as to what is your wife's condition. Stem cells seem really good but you have to be careful. I'm sure there are many bogus clinics waiting to fleece people.

There are thing you can do with alternative medicine to prepare the body for stem cell treatment - such as detox & get the intestinal tract in good shape.

In my case, I decided to stop all of the drugs to see what would happen. Guess what? I felt exactly the same without the drugs. In some cases, I think the drugs can make people worse than just having the illness. The side effects of the drugs can be the same as the symptoms of the illness, too.

It's a personal decision, though. I just hope you can all get through this. My heart goes out to you.

I believe the dx is correct, both symptomatically and from MRIs (lesions).

She has tried:

Rifing (so-so, very temporary pain relief)

Flagyl

Bicillin IM: not much imporvement. Shots very painful, got bumps under skin at shot site.

Azithromycin
Now on minocycline. Due to teeth problems, dentist suggested increasing dosage from 1 pill 2x/week to 14 pills/week. He complied. Why so low to begin with? She is losing ground, and he knows it. He told her.

Rife: Ok, but temporary pain relief.

Colloidal silver: One of the best yet. From DK in Maine. Instant relief from pain for about 1 hour.

PS: Here is her med list from memory. Might be missing some:

Meds/supplements Mary is taking:

Transfer Factor
Monocycline 2x, morning, bedtime
Lexapro (depression)
Mag 600mg - CALM
Trace minerals
Probiotics (mid-day)
Cod liver oil one tea spoon in the morning. I suggested 2x/day.
B12 shots: stopped due to cost. Did help.
Multi vitamin, gel or liquid
COQ10 - 200mg 1x/day
Tumeric (inflammation)
Vit C Ester

Pain:
Clonazepam 1mg up to 3x daily
Oxycontin 40mg 3x/day
Oxycodone 5mg/4 hrs PRN
She tried morphine, but was not effective.

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MaryinVT
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quote:
Originally posted by Kathryn:
Hi John,

I'm sorry you are in such a hard situation. I've been reading the following blog for the last year or so...

First read this enty:

http://lymemd.blogspot.com/2009/02/today-i-cried.html

Then this one:
http://lymemd.blogspot.com/2009/03/tear-of-joy.html

This might give you hope for your wife. You can ask for someone to Private Msg you the doctor's contact info in the Find a Doctor's section.

Will be thinking of you and your wife.

Thank you Kathryn.
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JamesNYC
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Just so everyone knows,

my brother goes to this same LLMD. His experience has been very different. My brother went from being almost completely debilitated and feeling like he was dying, to now, 2 years later, back to 90+% of normal. He has great confidence in this Dr.

It is SO bizarre how patient experiences can vary!

(BTW, my bro' is a member here. But he doesn't post much and doesn't like dealing with the lymeNuts here, like ME I guess! [Smile] )

James

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sixgoofykids
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I would be pushing for IV if it were me. With it clearly in her central nervous system (brain lesions) and with her being so sick, O would want IV. I'm not a doctor, just my opinion as a previous Lyme patient.

I am confused, in one of your posts you say this doctor is treating your daughter more aggressively ... in another that your doctor is seeing Dr. H. I'm sure I'm just missing something ... [Smile]

--------------------
sixgoofykids.blogspot.com

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MaryinVT
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quote:
Originally posted by purplemom:
John,

I would consider going to a hospital. Even though they may not be as lyme literate as you like they may be able to help with other things going on.

I did PM you. I'm sorry I did not have a good pain recommendation. Do you have a local lyme support group? I know our area leader knows alot of the docs around and makes referrals.

I don't know of any support groups in the area (central VT). If you could check with your area leader that would be appreciated.

John

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MaryinVT
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quote:
Originally posted by sixgoofykids:
I would be pushing for IV if it were me. With it clearly in her central nervous system (brain lesions) and with her being so sick, O would want IV. I'm not a doctor, just my opinion as a previous Lyme patient.

I am confused, in one of your posts you say this doctor is treating your daughter more aggressively ... in another that your doctor is seeing Dr. H. I'm sure I'm just missing something ... :)

Sorry. My daughter sees Dr. H. The local LLMD looks to Dr. H for direction and education.
Posts: 23 | From Vermont | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
JamesNYC
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If she's that seriously ill, then what else but IV? The abx of last resort is vancomycin. Better than certain death though.

All our prayers are with you.

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Vermont_Lymie
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I agree with Sixgoofy about trying IV antibiotics.

Why not start her on IV Rocephin and other abx? That will probably be alot cheaper than going to India, and is the recommended treatment for neurological lyme.

Please consider it, our thoughts are with you.

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sparkle7
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There are still many options. It does get very depressing being in pain all of the time & not being able to function or work.

Tell your wife we are all rooting for her! She is not alone - neither are you!

Most of us know how hard it can be with the illness & the financial pressures. Don't give up just yet. There are still things to try. I'm not a big fan of drugs but they do help people.

There are also lots of herbal remedies as per Dr. Cowden, Dr. Zhang or Stephen Harrod Buhner...

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coltman
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That stem cell treatment in india looks miracolous there is a patient reporting here brain lesions resolved . It costs 40G though, so IV is much cheaper options if it wasnt tried before

quote:

B12 shots: stopped due to cost. Did help.

B12 is dirt cheap. Vet grade (exact same thing as human) is $10/ 100ml - that will last for long time. Human name brand is $1/ampoule - and this is online with no prescription.Probably cheapest injectable out there


quote:

Bicillin IM: not much imporvement. Shots very painful, got bumps under skin at shot site.

This typically happens when shot is not deep into muscle and/or there is leak into subcutaneous layer. To avoid it needle has to be long (at least 1.5 inch), it is advised to use z-track and slow withdrawal. And mix it with lidocaine for pain

Thought its probably way past stage bicillin could help

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MaryinVT
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quote:
Originally posted by coltman:
That stem cell treatment in india looks miracolous there is a patient reporting here brain lesions resolved . It costs 40G though, so IV is much cheaper options if it wasnt tried before

quote:

B12 shots: stopped due to cost. Did help.

B12 is dirt cheap. Vet grade (exact same thing as human) is $10/ 100ml - that will last for long time. Human name brand is $1/ampoule - and this is online with no prescription.Probably cheapest injectable out there


quote:

Bicillin IM: not much imporvement. Shots very painful, got bumps under skin at shot site.

This typically happens when shot is not deep into muscle and/or there is leak into subcutaneous layer. To avoid it needle has to be long (at least 1.5 inch), it is advised to use z-track and slow withdrawal. And mix it with lidocaine for pain

Thought its probably way past stage bicillin could help

Do you have a source for this?

B12 is dirt cheap. Vet grade (exact same thing as human) is $10/ 100ml - that will last for long time. Human name brand is $1/ampoule - and this is online with no prescription.Probably cheapest injectable out there

Posts: 23 | From Vermont | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
   

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