I've been off Mepron for a day now and will be for 6 more. I'm in much more pain being off than on. This pain in my muscles / cramping feeling wasn't there before I started. Weakness was a major issue.
Did it do permanent damage? CO-Q10 depletion? I feel like I was in a war. I'm trying to get my liver enzymes down and I now need to take Ibuprofen due to the pain. Nice.
My quadricep muscles hurt. My forearms muscles. My calves. It's just like a deep muscle pain and every movement is felt.
I stopped supplementing with Magnesium and Calcium for 7 days. I doubt this is it though as I don't take that much (400-800 mg max). Again, I didn't have the muscle pain before ever starting Mg supplementation.
Any thoughts? Mepron seems like such a dangerous drug. I hope all these docs are confident in their Babesia Dx with an IgG titer of 1:10 and no IgM activity. The risks seem high. I do have a borderline high WA-1 IgG titer (1:256), but my doc said WA-1 is treated exactly the same as Microti.
Posted by JamesNYC (Member # 15793) on :
Seek,
I don't see how Mepron can have any effect on your muscles. It's strange that your cramping has gotten worse since you went off Mep.
Lack of potassium can cause cramping. If you're low on mag then not taking it can cause problems right away. Maybe try taking the supplements and see what happens?
I'm curious, what is your heart rate at rest? If your body isn't getting enough 02 because of babesia, then your hr and respiratory should theoretically go up. Conversely, if you're getting benefit from the tx, it should go down.
James
Posted by Tincup (Member # 5829) on :
My theory...
Keep in mind I don't know when you started mepron, so it puts me at a disadvantage here... but anyhow...
Babesia is being killed. It is inside the cell and when you kill it you essentially have dead bugs inside the cell and kill the cell too. That means...
Less O2 getting to the muscles and more toxins sitting there, causing the pain and muscle fatigue... and more lactic acid build-up.
This experience can be intensified during a herx.
I am not a doctor, just a Babesia patient too.
Posted by JamesNYC (Member # 15793) on :
I don't agree TC. I hope you don't expect bellboys to carry your bags AND agree!
The infected RBC is already not delivering O2 to the muscles, whether the babs is dead or not. And I'm not sure it IS dead.
The Mepron may keep the babs from multiplying as much as it does any killing. Therefore the RBCs exist with a dead or live babs protozoa in it until the RBC's lifespan is over at about 3 months. It is then cleared from the system by the spleen. (This is from Dr. S's book).
I do not see how there is a herx, never mind a toxin build up, in this scenario. I could be wrong, however.
But muscle cramping from lack of O2 can happen. What are the sx for anemia?
Babeosis really should be done in 3 or 4 months, at least as far as sx are concerned. IF it's treated at the right doses.
James
Posted by Tincup (Member # 5829) on :
"Babeosis really should be done in 3 or 4 months, at least as far as sx are concerned. IF it's treated at the right doses."
I don't think the babs bugs took time to read the instructions in the James Babesia Book.
Posted by Tincup (Member # 5829) on :
Yo James....
I just read where you spent $35,000.00 on Babesia treatment and are angry at GSK because Mepron cost so much.
That sure doesn't sound like 3-4 months of Babesia treatment. It sounds more like 2 years worth.
Posted by seekhelp (Member # 15067) on :
Honestly I'm lost. JamesNYC, thanks for your messages. I'll respond soon. I don't know what I'm going through. Many say Mepron causes horrid herxes. Others, like you, say not so.
At the end, the patient is clueless. All I know is my autonomic nervous system feels different after 1 week of Mepron/Zith. My heart seems like it's beating harder all the time, BP won't go below 145/92, and I have fluttering in my ears slightly.
My doc says herx, herx, herx, and shockingly is not a LLMD. I was instucted to take a break to get this out of my system and re-start at a lower dose as the doc believes my infection load is too high.
James, $35k of Mepron? OMG. Give me a shotgun instead. That's SO much money to spend on a co-infection. How frightening.
James, I looked up the symptoms of anemia. I have normal RBC counts, normal iron/ferritin, all basiclly normal. These are the symptoms of anemia, I experience:
Paleness (been told by a few people)
Weakness
Tiredness
Shortness of breath (in severe cases)
An increased heart rate especially during exertion (in severe cases) - definitely, but out of shape too now because I have no energy to exercise - catch 22, right?
Equilibrium difficulties
Personality changes and depression - to a degree
Abdominal pain - not much but sometimes
Fatigue
Posted by JamesNYC (Member # 15793) on :
TC you misunderstood.
The SYMPTOMS of babeosis should be gone in 3-4 months, as the infected RBCs are removed and replaced with uninfected. That is NOT to say that there isn't babesia lurking in the bone marrow wanting to replicate.
With the RBCs clear, the SYMPTOMS SHOULD GO AWAY. You should have the normal count of clean protozoa free RBCs.
quote: From TC: I don't think the babs bugs took time to read the instructions in the James Babesia Book.
NOW READ THIS CAREFULLY AND PREPARE TO WIPE EGG OFF YOUR FACE!
THOSE INSTRUCTIONS CAME FROM THE JS 2009 BABESIA BOOK!!!!!!!!!!!!!!!!!!!!
SO ARE YOU RIDICULING THE KING OF ALL BABESIA???
After ALL that fur flying over the other now dearly deleted thread. We switched sides!!! Oh this is FUNNY! Boy he ain't gonna be pleased with you!
Now get over here and carry MY bags!
[ 12-02-2009, 12:06 AM: Message edited by: JamesNYC ]
Posted by Tincup (Member # 5829) on :
I misunderstood? HA!
Seek said.. "Many say Mepron causes horrid herxes. Others, like you, say not so. At the end, the patient is clueless."
Killing Babesia (being on Mepron) can cause some of the worst herxes I've seen and cause a multitude of horrible and freaky symptoms.
BUT.. take heart here. Once you clear the herx, you will feel much better.
Hang in there!
Posted by JamesNYC (Member # 15793) on :
Seek,
First I didn't spend $35K on Mepron, my insurance company did. I was figuring it at their discounted rate. The retail price is even more (I posted the prices a couple of months ago). I did pay $300 a month though.
Second, babeosis is pretty similar to anemia. However, while your RBC count will be normal, a certain percentage of your RBCs are not available to carry O2. In anemia you have fewer than normal RBCs and that shows up in a RBC count. The effect is the same.
Notice the similarities when you looked up anemia? One of the sources I found listed insomnia, and night sweats too.
I had shortness of breath, fatigue, etc. All the symptoms of going up to altitude. They're all gone now. I can actually SLEEP!
I asked about HR because I noticed my dropped suddenly at 4 months, right when I suddenly felt good again. (I ran 15 miles after intending to go 5. I hadn't been close to that in 5 years! I posted it but it got deleted because I used a single letter, out of 26, in a way that "offended" some people here).
I think that as the babs infiltrates the RBCs your HR will go up in order to supply needed O2 to the tissues. This happens when you go to altitude. This happened when my mom's lungs were compromised from cancer. (Disclaimer: I believe this for a variety of reasons. However, I have NO actual supporting medical studies to back it up).
Therefore HR may be a useful tool for judging improvement over time.
How much Mepron were you taking?
Posted by seekhelp (Member # 15067) on :
Nearly 3 tsp James. At 2.5 tsp, things started to get haywire.
Posted by Tincup (Member # 5829) on :
Seek said.. "These are the symptoms of anemia, I experience:
Paleness (been told by a few people) Weakness Tiredness Shortness of breath (in severe cases) An increased heart rate especially during exertion (in severe cases) - definitely, but out of shape too now because I have no energy to exercise - catch 22, right? Equilibrium difficulties Personality changes and depression - to a degree Abdominal pain - not much but sometimes. Fatigue
``````````````````````````````````````````````````` Just so you know, these are also Babesia symptoms. Be very careful thinking it could be anemia and trying to take anything like iron to address it. That can make you worse, much worse. Get the doctors advise on that. Ok?
James said.. "I do not see how there is a herx, never mind a toxin build up, in this scenario. I could be wrong, however. But muscle cramping from lack of O2 can happen."
Inside the RBC is a tiny piece of protein (Babesia organism). Alive it is causing symptoms we experience and 02 is difficult to transport making it worse... and causing the cramping and achy muscles (also headaches in some).
But dead, it can cause more problems..
And when killing many of these organisms all at one time (Mepron) and finishing off the RBC cell with it, you have a massive die-off, massive loss of RBC's function...
And the toxins (dead proteins) that are produced when the Babesia organisms and the RBC's are dying adds to it.
Again, that is my theory. But just like you, I may be wrong.
Yeah, right! HA!
Posted by Sammi (Member # 110) on :
seekhelp, for me muscle pain and weakness is from Babesiosis. When it is really intense, it feels like my muscles are screaming. Other Babs symptoms for me are severe heart palps, shortness of breath, chills, sweating, horrible headaches, and extreme fatigue.
I agree with TC about the herx. I have had some doozy herxes from Babesiosis. For me, it is my worst infection.
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I was instucted to take a break to get this out of my system and re-start at a lower dose as the doc believes my infection load is too high.