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I am so sorry you are having so much trouble.

If you don't mind - may I ask a few questions to help us understand your problem better?

What type of pain are you having - nerve, muscular,etc. and where is it located? What pain drugs and dosage are you on?

Could your weakness be, in part, due to a yeast problem,etc.? Have you been told a blood transfusion would be beneficial? Are you detoxing?

Mepron & Flagyl is a heavy combination. Getting ready to restart Mepron & Zith myself, after a break from it.

[This message has been edited by JesusisLord (edited 21 June 2005).]
 

I was unaware that although there's protien in nuts--low carb, low sugar, (almonds and peanuts I've been using to deter hypoglycemic reaction)Peanuts are OUT.

I understand your fear. It's you're damned if you do and then you're really damned if you don't. The fear becomes a tipping scale.

How long were you treated before you were taken off?

I've not taken either flagyl/mepron. Maybe your doc would consider the pulsing of one or the other so that you're not completely out of commission.

Big hug. Keep us informed.

 

I am so sorry that you are having such a bad time.

A pain level that is off the scale is unacceptable. I'm sure your LLMD with help you in getting this under control.

There is always the option of a referral to a pain clinic.

In addition, some physicians have a good working relationship with Hospice profesionals and consult with them when they have patients with major pain control issues.

Two things that may be beneficial to discuss, during your LLMD visit, would be subtherapeutic dose and tolerance issues related to your pain meds.

A simple lab test will show whether you are in need of a blood transfusion. Sure hope this is not the case.

Hope your visit goes well and that you get some answers.
 

Are you having intestinal problems? Are you eating well?
You've been off antibiotics for a month; what have you done to "build your system up?"
Apparently it hasn't worked.

If your cells are not getting enough oxygen, you'll feel really BAD. And weak. Blood tests can determine what shape your red blood cells are in.

I'm concerned for you.
Carol
 

I began seeing one two months ago and found out that I am anemic, low DHEA, hormones all a quiver, thyroid off a smidge, etc....

After two months of supplements to counter imbalances and heavy inflamation, and new meds...higher thyroxine, new bioequivalent hormones, DHEA, Bone and Join Complex, iron, lots of fish oil, lots of magnesium, digestive enzymes, etc, I finally feel like I'm out of the cave.

In fact I feel pretty darn good for the first time in years.

It was a very nasty cave with miserable pain, sweats, herx-like symptoms...The endocrinologist thought that I was caught in a huge cytokine cascade brought on by a strong reaction to levaquin followed by three weeks of no antibiotics.

A large cytokine cascade is what kills flu patients in epidemics. That's why we should take a herx like a stroll in a very unfriendly park on a dark night. They can be miserable and perhaps deadly.

I felt as if my blood was totally off balance. My mean corpuscular volume was low, hematocrit was low, and I had too many immature red blood cells...Most likely due to a particularly recalcitrant babesia WA1 infection.

I've done the Mepron/zith and mepron/flagyl routes before. Haven't been near them in a year, so my misery wasn't connected to this sort of drug combination. Also, neither made me feel as miserable as I did for the past two months.

I also suggest seeing a pain management doc. Again, ask your LLMD for a friendly referral.

Hang in here. I've been in your miserable, painful, lonely place and it's no fun at all. It can change...Tell your doctor how incredibly miserable you are and get the support you need from the other medical specialties. And keep coming back for support here!
 

I think what makes it worse is that we know we are doing every darn thing possible and feel so impotent when it's not working.

I finally gave in to a pain management approach which I hadn't wanted to do, and it is taking the edge off the pain most days.

My neuro. just added in Imipramine in an effort to get me off the pain meds. It's taken with Neurontin for the nerve pain from PN. Still, I woke up this morning crying in pain and not knowing how much longer I can take it.

I have wanted to give up due to the extent of the pain, and am hanging in with God's help. Please hang on and know that we here all love you and care.

I will pray for you and send you love and light. If you want to email, please feel free, maybe we can support each other.

God bless.
 

I saw your name and had a strong feeling that I needed to be in touch with you. Can you contact me please if you are comfortable with that?

Marblenose, I just prayed for you, please stay strong.