Topic: No Brain Surgery, I'm Home and now on Doxy, IDSA Dr. Treating my W1A Babesia
lymetwister
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Hospitalized 8 days and now home. I was told 6 times back and forth that I had this Vertebral Tortuous Artery pushing my brain stem like a "mass effect". I was also told it was cutting off blood supply to my Vagus Nerve.
Test after test after test, I was told I have it, I don't have it. Back and forth, no one could make up their mind. To make it worse, I was told only one surgeon in the U.S. would touch it if I did have it and the risk of Stroke, bleeding, paralysis, and death were high due to the location.
I went through a painful angiogram, WITHOUT sedation because they thought I might stroke from the procedure.
Finally, an IDSA Dr. saw me and put me IV Doxy 100mg 2x day for the suspected Lyme.
Again, I came back pos. for this W1A version of Babesia. They wrote me for 9 days of Mepron and 18 days of Zithromax.
Should I even bother taking for such a small period of time ?
3 Doses of IV Doxy and I feel more confused than ever with terrible vertigo. Is this a Doxy Herx ?
I'm infested with this crap. I feel like I have no nervous system, my breathing is so screwed up. My cheeks start puffing like I'm out of breath and I feel out of breath from just walking across the room or from any type of emotional stress. I'm crying all the time like a 2 year old. It's getting old real fast for everyone around me.
I can't believe how bad I am getting. I'm on medicare and can't afford the Mepron.
I don't know how you guys go on. If I didn't have my kids, I wouldn't even be sitting here typing this as of the last month.
I thought I was so strong and nothing could ever get me, but I was wrong. So much for being a state champion wrestler back in my day.
Gary
[ 01-13-2010, 02:45 PM: Message edited by: lymetwister ]
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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If you're on medicare go the IV clindamycin route. And take it with either quinamax which you'd have to get from canada or mexico, or take quinine powder which you'd get from raintree or ktbotanicals. Medicare will pay for the IV's as long as you're on original medicare and pick a drug plan from that.
I took mepron and it didn't do a thing for me. But once I did the above treatment along with cryptolepsis my babesia symptoms were gone within a month. Plus you can also add in artemisinin to that treatment for cheap too. So don't worry about mepron costing so much, you don't need it, there are other options that can work better anyway.
And as I always say if you have any amalgams get those con artist tricks taken out of your mouth.
I was in the hospital with a bunch of quacks telling me I had to get a heart transplant or I'd die, turns out the mercury from the vaccine I got along with the babesia was weakening my heart and those for profit educated hilljacks never would've figured that out. So hopefully you won't have anymore experiences like that you just went through. It's easy to get depressed and want to give up, just try to stay focused and know there's an answer to our illness even though we're all different.
Posts: 499 | From Indiana | Registered: Oct 2007
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sutherngrl
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Why only 18 days? I thought even the IDSA ducks would treat for 1 month.
I would take the meds while waiting for an appointment with a real Lyme doctor.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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I'm new to the World of Lyme and can't believe how tough this is, either. Most posters say they got worse before they got better, so hang on to that.
Looks like my kids have it and I'm also an wreck. I feel like I'm living a nightmare. That's why the recovery stories are especially important. They give us hope.
You are not alone. Take it a day at a time ~ or even a step at a time.
Posts: 25 | From Long Island, NY | Registered: Jan 2010
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lymetwister
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I can't afford a Lyme Doctor, or I would be there.
Not matter what I do, whether it be antibiotics, Rife, Salt C, my symptoms get worse.
My biggest stuff is inside my head.
I'm talking constant Headaches, feel like I can't think straight, whoosing sensations that go through the head that feel like a seizure is coming, yet never does. Feeling like I'm falling over while seated. My eyes now having trouble with light, and loud sounds bothering me.
The crying I'm doing is innapropriate and very exagerated. I recognize this, yet can't seem to control it. Very scary stuff. Aches and pains are there too, and I'd rather just deal with them.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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gwb
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Gary, so very sorry to hear what you are going through, and yes, it's so touch on our families too. That's the hardest part for me seeing my family suffer and hurt for me.
It's good to cry and let it out, nothing to be ashamed of. I have done quite a bit of that the past few months too. Believe it or not, crying can actually play a role in healing. Crying is the body's innate healing mechanism for coping with stress. It's OK to cry.
How much does the Mepron cost?
We are praying for God's comfort, grace and peace upon you and your family.
16 months ago i thought i was not strong. I thought i was a pussy basically. Get that thought out of your head now. That is not you talking that is the disease. Start taking back to it by doing everything you can. You will find out quickly that you are stronger than you think. That is what this 46 year old bald guy found out. I'm still not well but i don't give in to this, i go to the gym, i changed my diet, whatever it takes. if the disease tells me one thing i do the opposite.
Don't give up...once you realize your unrational way of thinking is not you you can fight back mentally. Find yourself in this mess....if i could do it then i know you can to. PM me anytime....i'm hear if you need me.
Keep The Faith,
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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lymetwister
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I use to feel better after crying as if I was releasing toxins.
Not anymore... Now it's just lots of crying. Everytime I think or look at my kids, I breakdown. Same thing goes when my parents come over to visit and they leave.
You'd think I was never going to see them again. Maybe thats what I'm thinking. I don't even know anymore.
The Mepron is like $600 per bottle. I called Smith Kline Beachum and they have programs for people like me who are now broke, but they want tax returns and have all sorts of criteria that even if I met, it would take forever to get the medications.
They told me on the phone that I had to have spent over $600 in prescriptions this year. Well, Jan. just started, so if I had $600, I would have bought the Mepron.
I'm really taxed after that Hospital stay. I was basically told I was dying, then not dying, then dying, then not dying, etc. over and over again.
Then just when I think I'm getting some versed for this procedure and looking forward to it, I'm told NOPE, just some local in the groin site. I was going bananas on the table. My head was taped down as the catheter was passed through my carotid artery into my brain. Every time the Dr. injected Dye, my vision went, it felt like my ear was falling off, and the pressure created in my head was intolerable.
All the while, the Dr. tells me if I turn my head I could have a stroke.
Finally, back to my room, where the IV Doxy is waiting. For an hour my IV is burning like hell as the med infused.
I have the nurse change my IV thinking it's the IV, she misses my vein. Two more sticks and we have a working IV. IV Doxy started back up, still burning like crazy.
I'm just laying there grabbing my arm thinking when will the pain ever stop.
I'm starting to think I might be some type of profit soaking up everyone elses pain thats around me.
Will go to bed and see what tomorrow brings. Just added Tindamax 250mg tonight. Lets see how bad my simulated heart attacks feel like tomorrow.
BTW, I'm trying yet another SSRI, which I can never tolerate the side effects, but thought to myself tonight, I don't think it can get any worse over here so what the hell. It's Zoloft and I'm trying 25mg to start. I know it will make me even sicker on the 3rd day or so. If I have to, I'll cut down to pediatric dose when I hit the bad spot.
Thanks for the support guys and gals,
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Where did you get the Tindamax? This is the first I have heard you mention it.
Posts: 819 | From East Coast | Registered: Apr 2009
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lymetwister
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Member # 19590
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Tindamax was in the covert from over a year ago when I had my first Herx, didn't know what it was and thought the drug caused it.
I totally forgot about it being there until tonight.
Is this a good drug to take ? I know it's for Lyme but don't know which infection it treats.
I also have a ton of Amoxicillin down there too. Maybe I should just take all the antibiotics that I can find laying around here. ?????
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Gary, I'm really, really sorry for what you're going through. I'm pretty sick, but your ordeal makes me speechless.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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Gary - we'll try to help little by little -
for your eye problem with light, you could try drinking some mangosteen juice and see whether it takes down that symptom. It did for me. We all vary in our response.
I suggest you do a Search for tindamax here and read about people's varied responses to it. Some handled it ok and some didn't - I think it would be helpful to be aware of possible reactions and gauge for yourself whether you'd want to continue it.
Posts: 13116 | From San Francisco | Registered: May 2006
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Rumigirl
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Gary,
For Pete's sake, you need an LLMD!! I know it's the money, but there are some that take Medicare---isn't that what you have? I
know, not most, but some. I know of one well-known LLMD who does (not in your area, however).
I don't mean to scold you; you are going through so much. It's just that you really need to be under the care of an LLMD---money be darned! Please make it your quest to find someone
who does take Medicare, who is good that can help you. It's what you need and deserve. ANd therefore what your family needs and deserves, too. This journey is hard enough as it is.
Posts: 3771 | From around | Registered: Mar 2008
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sparkle7
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Good luck Gary! I'm rooting for you.
You may think to throw caution to the wind but the abx can have serious side effects. If you start them, you have to have a careful plan. They aren't something to take just willy nilly - especially in light of your condition as it is.
My doctor told me you can substitute Mepron with Malarone. He's sending me prescriptions for Malarone & Zithromax for Babesia. I'm still researching it to see what the best route is for me.
Just take it one day at a time & breathe... I know it sounds stupid but meditation helps me when things get rough. I'm in the same boat as you - I have very little money for treatment these days.
Even people who go to the best & most expensive doctors have a hard time with this illness. Throwing money at it does not necessarily make you get better quickly.
You have to make the right decisions. Doctors don't always know what to do. Taking abx without a plan can lead to drug resistance & is not going to be helpful.
You have to take the correct ones for an appropriate amount of time. In my case, I couldn't really afford them & I didn't want to screw around - so, I went the herbal route. Less chance of making a big mistake that would make me worse.
They also didn't help me much. I'm still ill after 14 years. We just have to keep trying as best as we can. I hope things will get better for you.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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IV doxy burned my veins too. See if they will dilute it more or put it in very slowly. Might help.
There are lyme docs who take medicare and there are some babesia meds that do not cost so much. Contact groovy about what he used that was effective and cheap, but might be hard to take. And you get the clindamycin IV suggestion from someone. This drug was good for me. Take with artemesinin?
Posts: 8430 | From Not available | Registered: Oct 2000
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IckyTicky
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"He won't go to a Lyme doctor" Sorry.. but that statement ticked me off! Not everyone can afford a Lyme doctor! My whole freaking family has Lyme and we struggle and even go without meals trying to afford the one we are seeing... and even THAT is only because the Lyme doctor is giving us a MAJOR discount out of the goodness of his heart and not charging us for what insurance won't pay for! The nerve of some people...
Gary, hang in there.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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sutherngrl
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Gary, don't you have family. You mentioned your parents. I would seek out family and friends willing to help you pay for what you need to get well. If you can get a little help from others, you could get a LLMD to just see you every so many months to save money there. Like IckyTicky said, some docs will work with you.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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wow all this stuff is scaring me. i just found out today that i have a tick borne illness that's not lyme. i'm going to pick up the western band results so i can research exactly what band was positive and what it all means. she's treating me with doxycycline for fourteen days. i got the bite about 8 months ago, but didn't put it all together to be tested till a few weeks ago. severe joint pain, chills, and muscle twitches that are now getting worse.
Posts: 3 | From rogers arkansas | Registered: Jan 2010
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Gee Gary, it just doesn't seem to stop with you.
I remember when a doc also suggested brain surgery for hubby -- he wanted him to get the surgery Michael J Fox had to stop his tremors and myoclonus. The neuro even faxed hubby's records to a surgeon, but we never followed up on that appointment.
I also think that getting rid of the babesia would make a world of difference.
This is what I would do -- continue on the IV doxy as long as the doc will prescribe it and medicare will pay. I know it is not the suggested therapeutic dose, but unless someone tests your blood levels you really don't know what dose is necessary. Hubby took oral Doxy for a few months and his doc tested his blood levels -- peak and trough. For him 200 mg was enough. The herx should lesson if you can tough it out.
For babs -- hubby was allergic to mepron. He couldn't tolerate the psych side effects of Larium. So he took low dose clindamycin and quinine for 4 months. Did this 3 different times over 3 or 4 years. Always improved but not enough and it didn't last.
The third time he added a couple of rounds of chloroquine and primaquine at the end (research Liz 28 protocol here on LymeNet). Do not think that was 100% effective. Next he did 8 months of Alinia -- 4 months at half dose and 4 months at full dose. I really do think the babs is gone.
But to make sure, we also did a couple of months of Daraprim with Deplin (prescription folic acid). Also was on low dose Mino and low dose Zithromax at the time plus Bactrim.
Hubby took artemesinin for 15 months straight before he did the clindamycin and quinine. Didn't know at the time that that herb needs to be pulsed to be effective.
If Mepron is out of your price range then I would try some of the other meds I have mentioned -- the Alinia is expensive, but the others are all pretty cheap.
I would keep trying to find an LLMD who could monitor your meds. And I would have your father or someone who is supportive of you go to the appointment with you. You have positive tests which is one up on many here -- but as you have found out time and time again the standard AMA docs only know how to run tests and aren't much good at treating these tickborne infections.
So sorry you are having such a hard time.
Crytolepis tincture might be helpful with the babs, but it could get expensive if you needed a high dose.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I hear of a lot of what I would call sleazy ideas on how to "work the system"... I can thank my uncles for that knowledge.
But I've heard of medicaid divorces where what you would do is move all your money into your wife's name, then get a divorce (i mean it's just paper), then you will be broke enough to qualify for medicaid and get a heck of a lot of things paid for.
Or you can basically do the same kind of thing and move all your money and assets into your wife's name then apply for as many credit cards as you can in your name and use those to pay for your expenses. Then after you finally recover you file bankruptcy and remarry. You still have your house and everything you moved into your wife's name from before.
I don't know the full situation for you now, but you might end up filing bankruptcy anyway, so raking up debt to pay for your treatment before you do wouldn't be so bad. Maybe other people can add to these ideas or clean them up a little. I'm just trying to throw some options out there.
Posts: 499 | From Indiana | Registered: Oct 2007
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sparkle7
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Only problem is that they aren't handing out credit cards like candy anymore ( as far as I know).... LOL
Good try pryorka. I like your Abby Hoffman - "Steal This Book" spirit - if you know what I mean...?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
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PS - Bea - How was Cryptolepis Tincture for Babesia? How did you determine dose?
By the time hubby got around to doing the cryptolepis tincture we thought the babs was gone.
He used it for bart or mycoplasma or BLO or whatever the mystery bug is that shows up on his bloodslides from F lab and Clongen.
I started hubby on 1 dropper 3 times per day or maybe it was 1/2 dropper -- anyway worked up from there. Buhner suggests 5 droppers or 1 teaspoon 3 times per day for babs. One ounce is 30 droppers.
Hubby worked up to 15 droppers or 1 tablespoon or 1/2 ounce 3 times per day. Took about 6 weeks to get to maximum dose. Was only on that dose for about 1 week when we learned about the shortage of the herb. I decreased his dose back to 10 droppers and then back to 5 droppers and eventually ran totally out for a couple of months before the new supply became available.
Hubby's tremors and myoclonus were 90% gone for the first time in 8 years for about 4 weeks, but gradually returned and when I tried the cryptolepis again it didn't seem to work. Bilirubin also decreased to normal meaning that the bugs were no longer killing off so many red blood cells.
Woodland Essence sells 8 ounce bottles of the herb -- don't want to quote a price as they offered us a 10% discount for buying multiple bottles at a time. Not sure what their current pricing policy is. We also used Bear Creek Herbs, but shipments were somewhat unreliable as to timing and they were more expensive.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Pinelady
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Gary you could always try to convert your IDS Doc.
You could pull up the proof of IDSA guideline
review, and biofilm research and possible new
treatments. That may get you more antibiotics.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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