posted
Hi All, I have not had the strength to write here on a regular basis. I am so weak it is terrifying. LLMD took me off all anbx one month ago to try to build my system back up and let my immune system kick in. I am as weak as a teeny tiny puppy. The pain is unbearable. 97 from 1-10. I am on major pain meds to no avail. I want a blood transfusion. He is talking mepron/flagyl. I have very belief in my LLMD, I am afraid. I hear from everyone the combo is powerful. I need experience strength and yes, to coin the phrase,hope!! Please help. Blessings, Marblenose
Posts: 287 | Registered: Nov 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey Marblenose, Hang in there. I know it can get pretty darn depressing to say the least but it can get better....I've been a lot worse at times and have gotten better you will too. I have not had the Mepron as yet but I have had flagyl....the flagyl was all I took for a couple years. Don't do alcohol on it(not that you would). I am now taking Ketek, amantadine and pulseing metronidazole and when I get three or so months of the amantadine in me I am going for the mepron(due to the sweats I still experience which may be babs). Anyway, I've been on and off abx's IV, IM, and Oral for about eight years now so I have some improvement over how you're obviously feeling right now. Keep a stiff upper and try and keep positive. All of us are with you in this long battle. zman
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Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Marblenose, I've had a bad bout recently and I'm pretty certain my weakness and physical uncertainty was due to malabsorption. I'm going to practice the yeastfree diet.
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.
posted
Hi All, The pain is in the neck, shoulders back and weakness all over especially limbs. I'm on serious meds and I would rather not share online so as not to get my LLMD in any trouble. Suffice it to say it is not working, I'm a wreck and going downhill fast. The tranfusion thing is a gut feeling that my blod needs to be refreshed. Any other options I am open to... Blessings, Marblenose
Posts: 287 | Registered: Nov 2004
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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.
Posts: 111 | From Tick Country | Registered: Jun 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Marblenose, I don't know, this really does not sound good.
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
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Thanx Carol, I am concerned as well. LLMD will do blood work. He is wonderful. I have every confidence in him. I take many supplements to build up my system and do alternative treatments as well, all of which he approves of. The weakness feels like problems with the red blood cells. Any and all info is greatly appreciated. Blessings, Jan Posts: 287 | Registered: Nov 2004
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breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
You might want to add a friendly endocrinologist to your list of doctors. Ask you LLMD for a referral.
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!
posted
Thank you so much, My gut has been saying endo. for several weeks. I will talk to LLMD tomorrow. I also feel aenemic. I take so many supplements already including some you have mentioned. A boost is what I really need. I am so grateful to you and the site for all the help I get. Blessings, Marblenose
Posts: 287 | Registered: Nov 2004
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lhm312
Unregistered
posted
Marblenose, I am also struggling with unbearable pain throughout my body and understand what you are feeling.
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.
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