posted
Hello, I have been diagnosed with Lyme. My symptoms are pretty typical, the worst of which is depression and SEVERE vertigo and dizziness. I was treated with 6 weeks of Doxicycline, which seemed to clear up the fatigue and depression, as other symptoms persisted, and got worse. The fatigue has not yet kicked back in, but I sometimes feel ready to fall off of the earth from the dizziness. I also feel completely devoid of thought, sometimes forgeting what I am doing while Im doing it. _ Anyway, My dr has recommended 4 weeks of IV Rocephin for me. I am somewhat nervous about this, partially due to the fact that my Dr. is not very good, and has been a bit of a jerk to me, and partially because of the things I have heard about Rocephin. It seems to cause gallbladder dysfunction, and does not always cure the disease. I am quite poor, and I cant really afford more doctors. Can someone please help me? I have been to 6 different Dr's in 3 weeks. I am going for an MRI 2morrow, and I am ready to just give up on the whole thing. Anyone out there have some good medical advice?
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MDW005
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Member # 22706
posted
Do you have an LLMD? 6 docs. in three weeks?
I strongly suggest stop spending money on drs. and see a LLMd.
If you can't afford one right now then I would take advantage of the IV Rocephin while being offered. Most likely it won't be strong (1g) if it's an Infectious disease dr. prescribing.
Are you taking liver support and other supplements?
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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posted
I was on IV Rocephin for 3 weeks in 2002. I was supposed to have it for 4 weeks but I got an infection in my PICC LINE. It did help with many of my neurological symptoms, but I went on to have my gallbladder removed, because it stopped working, 3 years later--coincidence?. Maybe yes, maybe no. I also had other flare-ups after the treatment. You do need to see a LLMD, however. I was put on Rocephin by a MD and an infectious disease doctor who were not Lyme literate. (Had they been, I think they would have followed with an oral antibiotic protocol.) I did get a lot better with that protocol when I saw a LLMD 2 years later. That said, I agree that it would be worth it to take the Rocephin now and follow up with LLMD when you can! Don't give up!! You need antibiotics to get better and Rocephin did help me.
Posts: 5 | From Villa Park, Il | Registered: Apr 2010
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lymeboy
Unregistered
posted
?? These are my exact concerns. Why would I risk having my gallbladder removed? Has Rocephin been proven to kill gall bladders? I appreciate the info, but how can you recommend Rocephin after losing your Galdbladder?
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
IV Rocephin REALLY helped my vertigo. I was a rocking boat 24/7 before and now have some bad days still, but nothing like before.
Suggestion: my ID doc (I did not know about LLMDs at the time) was the one who put me on the Rocephin alone, no combo therapy. I relapsed hard afterwards, I think primarily b/c of the lack of combination Tx. Talk with your doc about it for sure.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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lymeboy
Unregistered
posted
can I ask what is combination Tx?
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MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
My dr. at the time of treatment was an ID doc.
she only put me on 1 gram for 5 1/2 weeks would not make it higher like LLMDs 3-4 grams.
Her concern when I asked for higher dose was It will destroy the gallbladder. She told me NO!! My dr did run blood tests every week to monitor. With a good LLMD they can monitor.
IV rocephin was a great jump start for me.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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lymeboy
Unregistered
posted
I amnot taking liver support right now. I just returned from my Dr. He wants to administer shots of Rocephin in the butt. He also gave me oral Penicillin to take by mouth for the days that I could not be injected, since he is not there every day. He wants to administer 10 doses of Rocephin in shot form. Does this sound right? He is not a LLMD. I went to a "SPecialist" in South Jersey, who was not able to diagnose me with late stage Lyme, after 4 blood tests. He doesnt want to talk to me anymore, nor will he recommend me for any treatment. He said that my persistent symptoms must be from something else. My current Dr. is a nice guy, but he seems to not be much of a specialist. He is doing what he can for me, but I am nervous that his treatment will not go far enough. Any advice or knowledge on this subject would be greatly appreciated.
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MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
lymeboy... you really need to take liver support,
most here take milk thistle. very important.
No, you will not be treated properly without an LLMD. nice guy will not heal you.
I don't know anything about roceph. shots to give advice, sorry.
I wish I could help more...I just don't have enough knowledge.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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lymeboy
Unregistered
posted
I cant really afford an LLMD or the iv.....thats the unfortunate thing here. I have no choice but to take what I can get....
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I suggest you not take that attitude--that you have no choice.
As one doctor said, lyme disease is a rich person's disease. What he means is that it costs money to treat it. Why not let your family and others know about your dilemma and see if others are willing to help you.
Contact your church and see if they are willing to help. I have gotten my church's OK to pay for the first lyme doc visit, which is the most expensive one, for a few people.
Try to really get creative in order to get good lyme treatment, because what is at stake is your health and your life.
If people you know have credit cards and will allow you to use their credit, you can put charges on a credit card. Then, slowly pay it back.
Many people have to ask others to help them with this disease. So, why not research lyme docs in your area and have some specifics on one or two you would like to see, plus their costs. Then, go looking for help to afford to go to one of them.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Hi Lymeboy. I am sorry to hear of your troubles. I too don't have a lot of money for treatment, and my daughter's is just beginning as she was just diagosed this year.
Anyway I have read a ton of books and have learned so much. The most informative was The Lyme Disease Solution. Bought on Amazon. Very informative and went over each of the popular Lyme abx and those for the co-infetions.
It disucsses doses, combinations and the possible side effects of each. Anyway, I know that with knowledge that I can be so much more proactive with my daughter's treatment, which in the long run saves me a lot of money.
Please don't give up!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
Hi again. I thought that I better clarify my post on IV Rocephin. I don't know if it caused my gallbladder to fail as that happened 3 years later. My liver function tests at the time I took the IV Rocephin were fine. I took it because I couldn't walk at the time because my legs were so weak. I had problems with speaking and memory. My right arm was very weak and I had problems writing. I aslo had dizziness and other neuro symptoms. The IV Rocephinn did help with all of these symptoms and got me back on my feet. I agree with everyone that it would be most helpful if you could see a LLMD and read as much you can about treatment options. Sorry if I confused or troubled you. I am not a doctor, just a fellow Lyme patient.
Posts: 5 | From Villa Park, Il | Registered: Apr 2010
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Hey, I've been researching 'creative' solutions. I think I'll have to move closer to my LLMD to do this, but what I found is that there are a lot of hospitals that have financial assistance programs for the poorest patients, and I'm pretty sure that i"ll be able to get my PICC line placement covered at one of the hospitals where my LLMD has admitting privileges (the programs cover people under somethig like 200% of poverty level, but they all vary quite a bit from place to place). I learned of this from a patient who got her PICC line that way from a different LLMD and different hospital than the one I'd be looking at.
The Rocephin itself costs $350/month by itself for 2 gram/day dosing, I think. If I were on Azithromycin as well, it's pretty cheap through Costco (you don't need a membership to use their pharmacy), and the manufacturer of IV azithromycin has a discount card that gives you something like 20% off if you fall within certain income guidelines. I couldn't find any help for making IV Flagyl cheaper.
Many LLMD's have OK'd patients learning to do their own home care for the IV line. I've talked to a few nurses about this and they said it's OK as long as you really pay attention to a few key elements, which a home care nurse would teach you when you start getting your IV care.
What costs a lot about IV is the supplies- as much or more as the Rocephin. Perhaps you have a family member who's a nurse and can help find them cheaper. Perhaps you will have to look into veterinary supplies (I'm planning on doing this). Perhaps supplies are just going to be the bulk of the cost for you.
I found the best prices on the Rocephin and supplies at Infuserve, the best prices on azithromycin and IV claforan at Costco, and a few other drugs that were cheaper or more expensive at other places- do your research or have a family member do it for you. There are many different delivery methods for the Rocephin (ie infusion balls, bags, Vial-Mate, a push method, etc) and they vary in cost and they vary in terms of what storage and shipping requirements are like, which can affect the price.
In general what this research taught me is that 'there may be options you are not thinking of'. We tend to have cognitive issues and depression, and both can make it hard to see your way around a financial problem.
I know that some things are hardest on people who make 'too much' for charity care or financial assistance programs but who don't make enough to afford the care, or whose financial circumstances otherwise make things impossible. But for those who are 'simply' too poor to afford any care, there are actually options beyond SSDI and so forth.
-------------------- Symptom Free!!! Thank you all!!!!
posted
Hey Lymeboy! Take a breath...now another. It's going to work out but you have to paddle. I did 7 months of IM Rocephin(Inter Muscular Injections) that's almost 100 shots. I had to pay cash and needed $$ help so I called every pharmacy and asked for pricing CVS it was $3600.00 for 10 injections!!!!! and Walmart Neigborhood store was $171.28 for 20!! and I also went to the library and picked up a drug discount card and also downloaded them from the internet and asked the pharmacist to check all of them for the best discount! Ceftriaxone is the generic. local infusion companies that supply people with thier meds will work with you if you as for discounts because you are cash customer and no red tape...they'll love working with you!
I think your jerky MD is waaaaay better than most non LLMD's he is prescribing ABX! that is amazing. usually they just show you the door and tell its all in your head. You do live in NJ and he might be learning as he is going- help educate him for the next not as smart lymeboy that will come after you. Download the Burrescano protocol and give it to him. before you go near a Infection disease MD, educate yourself to the controversy and see if they are open or closed..it matters! The gallbladder thing.. well, ask for ursadiol it keeps the liver from sludging during TX (short for treatment)its a lot of lingo to get down all at once huh? or milk thistle, or juice beets and radish and celery sevearl times a week! And I get your outrage..take ABX and lose and organ?!! well, yeah if it kills bugs and you don't really need that organ...yeah, kill the bugs!! Has anyone talked to you about diet? no sugar no flour few grains? Juice and blend? Bugs live on sugar..don't feed 'em! You are now a member of a sacred group of crazy survivors that will happily share thier experience, strenght and hope until you can! don't quit before your healing!
-------------------- AzDaisy life requires action Posts: 58 | From Tucson, AZ | Registered: Apr 2010
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posted
I just started on IV Rocephin (2mg 2/day)last week after 7 months of other oral abx, and after the first couple treatments at the hospital, have switched to home health care. Much more convenient. My LLMD also prescribed ursodiol and probiotics to help offset any side effects.
This is the first treatment that has caused a herx...and while I'm totally miserable right now (and up at 3:00 a.m.), I'm encouraged that my little bugs may finally be dying!!
PICC line sounded very scary to me, but the one inserting it was very good, calm, answered all my questions, etc. Don't be afraid to ask questions.
Posts: 13 | From Wisconsin | Registered: Oct 2009
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Combo treatment= combining a macrolide antibiotic (oral or IV zithrymycin or biaxin, for ex) + a cyst-buster (oral flagy or tindamax) with the ceftriaxone. By doing so, you hit three morphs of the Bb bacteria, not just the cell-wall form that ceftriaxone works on.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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lymeboy
Unregistered
posted
thanks everyone......I have a few replies, not sure if you will get them, but here goes, as for TF, you are right, I dont want to take what I can get, but I am kind of stuck right now. I am very happy to see that churches are paying medical bills... very interesting. I do not belong to a church, so that is not an option, plus I have spent the past 2 years borrowing money, finishing school, which is why I am where I am. Not very comfortable asking for tons more money to pay for a disease that many people don't really believe in. Thank you for your encouragement though! AZdaisy, I think My MD is ok, he is overworked, and simply an MD, his office is a zoo, but he has been very compliant, and given me quite a few referrals. One of which was for an MRI, which revealed lesions on the white matter of my brain which HAS ME COMPLETELY FREAKED #@!*!! OUT! But since those results he has now come around and suggested a PICC and IV and all that nonsense. so we will see. Currently I am on my 3rd shot of Rocephin, and I feel pretty lousy. hot and cold, depressed, tired. so if that is a HERX, maybe that means the shots are working? I don't really know. I did not know about the diet, I will happily stay away from sugar, I dont like it much anyway. what about caffeine? I am not sure I can survive without coffee. Also, you mentioned an Infectious disease specialist. The guy I went to seems to believe in late stage Lyme, since that is what he was looking for when he gave me the borrelia, and western blot tests, his reply was that they found nothing, and that he couldnt give me any further treatment without a psoitive diagnosis. - I said that I have major Lyme symptons, the worst of which is cognitive disorders and extreme dizziness. he said it could be something else. I do not believe that he is someone that doesnt believe late stage Lyme exists, but rather someone that just wasnt willing to go past the bloodwork they gave me, which is not always reliable. But I have an MRI that says my brain has been scorched by something, so with any luck this could help. I have now been referred to a neurologist, would you suggest going? teh brain damage has me in a very bad way...not sure where to turn....
Maria A your post was very informative. I will be looking into ALL of my options and choosing whichever will be the one that will get rid of this once and for all. FOR GOOD. and at the best cost of course....right now I am pretty overloaded with info, and just starting shots, which has really got me running around. Im pretty stressed out and not really sure what direction to turn in. I need to think some and go to yet ANOTHER Dr. ..argh. is the proof positive way to cure Lyme, with a combination? how long will treatment take?
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posted
Hey there Lymeboy, you are doing GREAT!!! my gray matter is likely jacked as well, it was the thought of bugs..that freaked me the $%&^@! out! eew! As far as MD's go..the Infectious MD, not all tests will be positive ESPECIALLY for last stage patients because we are so far way from the bite we often no longer make the antibodies (it's part of lyme's stealtiness) that's why LLMD's treat also based on CLINICAL presentation there are 60 standard questions ( I answer yes to 58) that is part of the debate I was alluding too. if the Neurologist is lyme literate then GO! if not...stick with your MD that is at least treating you. Brain damage smamage..leave room for GRACE and MIRACLES and HEALING or you wont have any! you are just starting your path give time time and through your watch way over the wall. It wont get better a second before it does....and it will, just not this second that's all! the standard of care for someone recently bitten is at least 6 months and if you are chronic then its 6 months to 5 years minimum..thats what my LLMD said and he is one of the top 5 Lyme Docs in the country and I trust him completely. LB, for what it's worth, there is no cure for late stage lyme...HOWEVER- you can get well enough for your body to be on the winning side of the fight! That takes time. The money thing is HUGE! I get it. I have been unemployed and virtually house bound if not bed bound for a year. I took my family to Underourskin and helped them understand at a whole new level. Diet- NO sugar, Flour, Cow Dairy, no COFFEE!!!! way too acidc and you can survive without it! I actually blew out my adrenal glands trying to generate energy from coffee...not worth it! LB, my man...you're sick and you need to treat yourself like you would a most beloved someone- gently, lovingly, patiently. Whole fresh foods, lots of good water. (chances are you are dehydrated on top of everything). one day one moment at a time...you are healing!
-------------------- AzDaisy life requires action Posts: 58 | From Tucson, AZ | Registered: Apr 2010
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