NeuroTalk Support Groups - Lyme: Oral versus IV Antibiotic Treatment

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Lyme: Oral versus IV Antibiotic Treatment

I've recently been having a conflict of interest with my SO. I had posted this on another website that has a fairly large Lyme Community, but hadn't gotten any feedback so I went 'hunting' online and came across some information I think everyone should know. Below I will paste my original post to state why I did this.

I am having a bit of a problem with my SO. While I am happy to see that these things come up on TV, it has casted a shadow upon how he is seeing Lyme in regards to me. I think it was the week before last while watching Diagnosis X, they had a case where a woman was treated for other things, misdiagnosed, etc. and it ended up being Lyme. Again this weekend, while watching Mystery Diagnosis a more severe case of Lyme ended up being the diagnosis (mind you, the man in question went quite some time without treatment and ended up with severe neurological complications).

My SO had seen both episodes which in turn seem to have him worried. I am currently on Amoxicillin (I couldn't tolerate Doxy, had bad reaction to it - not herx) and taking 1,500mg's per day. I don't feel better, but it's only been a week so I wasn't counting on it. Anyway, after he had seen the neurological damages caused with the man on tv, he is wanting me to call my doctors to request IV antibiotic treatment (he thinks it would be better and faster, I guess) and if they say no, he is going to ask his mom to do it who is a doctor.

I really see that his intentions are good, but I was wondering if there's any literature I could give him that shows which treatment method is best for which symptoms, stages, etc. I am unfortunately showing signs of arthritis which is my primary problem. I have an Infectious Disease Doctor, Rheumatologist and a Nurse Practitioner that I am seeing. They have suggested IV treatment only if the current treatment doesn't show any progress in around four weeks time.

[Posting the information I found in a reply]

I am quoting a few parts that stand out the most but I suggest reading the entire article that I will link at the bottom.

Quote:

The American College of Physicians and Surgeons has recently published a newsletter, "The ACP Initiative on Lyme Disease, Vol. 1, Issue 1". Which sites a recently published paper that uses serology as an end point for cure, and has a short period of a few months as a follow up. At no time were the patients symptoms assessed as the basis of successful treatment. Instead, serologies were used as the determinant (Reference: Cetriaxone (IV Rocephin), compared with doxycycline for the treatment of Lyme disease. Dattwyler RJ, Luft BJ, Kunkel MJ, Finkel MF, Wormser GP, Rush TJ, Grunwaldt, et al New England J. of Med. 3373(5):289:294 July 31 1997.) The conclusion of this paper was that a short course of doxycycline (the least expensive drug known for treating Lyme disease) is as effective as a short course of "costly" IV Rocephin.

It is quite a bone to throw to the health insurance industry by saying all Lyme patient can now be treated a short period of time with the least expensive drug, but is it true? Let's examine this article and premise: At the 1993 LDF Conference, a study was presented by Dr. Daniel Cameron, MD. In his study of more than 40 nursing home patients, he found that the relapse rate for IV Rocephin for four weeks was 25%, but the relapse rate for doxycycline was 87%. The difference in this study was that the follow up was 13 months not three months.

In a six year, ongoing study using the population of Nantucket Island, there was an interesting statistic that occurred involving the use of IV Rocephin. Since the entire population of 5000+ on the island went to only four doctors, it was easy to do long term followups on patients who were treated for Lyme disease. What was found was IV Rocephin had the highest rate of relapse, unless followed up for several moths with oral antibiotics. This was because the short duration of four weeks of treatment was inadequate to prevent relapse. This was why 57% of these patients had documentable relapses.

So, any current study that compares short-term doxycycline success with IV Rocephin is comparing two inadequate treatments to each other.

The key to the Nantucket Island study, spotting the high incidence of relapse, was in the length of the followup. The longer the followup, the higher the relapse rate. Some have said that this high relapse rate may be due to reinfection, but subsequent animal models have shown this to be otherwise.
At the 1997 LDF conference, a study was presented using naïve beagles as subjects. In this study, three groups of six beagles were studied. One group of six was infected; using infected ticks, and treated with four weeks of amoxicillin. Another group was infected and treated with a double dose of doxycycline for four weeks.

The third group was the control. In the doxycycline treated group, at three months post-treatment, it appeared that 100% were cured. But, at two years at autopsy, five of the six (5/6) beagles were shown to have active infection, or complete relapse.

A more basic study showing the inadequacy of doxycycline goes back to 1989, in an abstract from Austria. Here, the researcher incubated a live culture of Borrelia burgdorferi with doxycycline for two weeks. The culture appeared to be dead, as both motility and reproduction had ceased. The culture did not have the appearance, however, of the amoxicillin treated culture, which was filled with Lysed cells. So, using micropore filters, the researcher filtered doxycycline treated cultures, and separated the intact Borrelia from the supernatant. He then washed them, and placed the filtrate back into fresh culture media. Over two thirds of the cultures reactivated, becoming motile and beginning to reproduce. It appeared that doxycycline immobilized the bacteria by interrupting protein syntheses and metabolism. This pushed the cells into a non-metabolic state. Since the doubling rate is often used as a means of determining if the cells are alive, it was assumed that the cultures were dead, when they were in fact just dormant.

Link: http://www.canlyme.com/tom.html

I am sorry Ellie...

I am not a Lyme specialist.

But I can offer some general information about the actions of some drugs.

Doxycycline is part of the tetracycline family. It is a bacteriostatic agent.
That means it stops bacteria from growing/mulitiplying. It does not kill. It is still useful however in many diseases.

Cephalosporins and penicillins are examples of bactericidal agents. They kill outright.

So the article above is correct in some statements. What I do not have is the skill to comment on is how that impacts Lyme. In general bacteriostatic agents rely on the body for removing the intruder by the immune system.

I do not know if once Lyme is entrenched in tissues what antibiotics should be used. Certain ones do not penetrate well into some areas. Others do.
Cephalosporins like Rocephin are typically used for tissue infections following surgery/trauma. But they do not penetrate fluids well such as sinuses or middle ear fluid.

The value of doxy in general in medicine is its broad spectrum of action against many things, including anthrax. So I know it is a proven drug for many things. I just don't know where now in the Lyme community it stands.

Alot of changes have occurred in Lyme treatment, over the years. So I would have to defer to your infectious disease specialist on this question.

Antibiotic therapy that continues can deplete nutrients and cause side effects. Doxy is a huge depletor of many things. If you want I'll look that up for you. Rocephin (Cefatriaxone) depletes about the same things..so there is not much difference there.

Quote:

Antibiotic therapy that continues can deplete nutrients and cause side effects. Doxy is a huge depletor of many things. If you want I'll look that up for you. Rocephin (Cefatriaxone) depletes about the same things..so there is not much difference there.

Sorry it took me so long to reply!

I'd really appreciate it if you'd do that, as long as it doesn't require you going out of your way or spending too much time on it. :)

Thanks bunches for the information, it helps a lot.

Here are two things that my be helpful.

I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.

I happened on this site for a whole different reason. I belong to a chat room with a large Lyme group. So of the people are super knowledgable.

Take care

Missy

Yeah, I've read both. I have tried (to the best of my ability) to gather as much information as I can without following any 'hype' (as a lot of things these days seem to carry).

My main goal is to find the best, safest and most effective treatment for myself. Before I dive in too deep, I want to know everything about anything they want to do to me or want me to take, which is primarily why I'm trying to find the best factual information that is available to me as well as check out some of the studies regarding Lyme and the treatment of.

I've gone through the labrat phase with my epilepsy and I am certainly not willing to subject myself (or my vital organs) to such things again. :)

here are the depletion lists:

Doxycycline:

lactobacillus acidophilus
bifidobacteria bifidum both of these from killing in bowel by doxy

biotin
inositol

Calcium
Iron any supplements of these need spacing away from doses of doxy
magnesium

Vit B1
B2
B3
B6
B12

Vitamin K due to killing beneficial bacteria in the bowel by doxy.

Rocephin
Lactobacillus
Bifiobacteria
Biotin
Inositol

Vitamins B1
B2
B3
B6
B12
Vitamin K

Lyme treatments that are long (months as opposed to days) end up depleting the patient, and leading to side effects.
Candida overgrowth
loss of beneficial bowel bacteria
So a quality Probiotic should be considered, and/or a quality active culture yogurt daily.

I think attention to these nutrients will make the treatment less harsh, and prevent noscomial infection of the bowel by Candida yeast and C.difficle.

Is Amoxicillin better? I am taking 1,500mg per day right now. I have a follow-up on Friday to discuss increasing or changing my antibiotics.

has the same depletion list as Rocephin.

What needs to be considered, it the effect on the Lyme. You can always make
up the depletions. The actual effect on the organism I think, is the deciding
factor.

orals are great if you are realteivly new and not neuro-

if you are neuro you need IV or IM-

I needed 9 months of IV Rocephin- the first 6 I had no big changes at all!!!
One year of orals did NOTHING- I just got worse & worse!!!

Make sure to get treated for coinfections because they are the rule not the exception. In our 350 person support group from the last 8 years mayb 5 people have JUST had Lyme- the rest have all had mixed infections-

Babesiosis- Ehrlichiosis- which require different drugs- so you need a good LLMD!!!
Sincerely,
Sarah

I've looked into several LLMD's in California (and I cannot afford to travel far, nor am I permitted to drive far due to seizures).

While I can only assume LLMD's in CA (and probably world-wide) are protecting their assets (remove the 't') by charging these outrageous prices per hour, per visit and even per phone call - the providers in CA are protected by law. Thus resulting in some slight bitterness on my part as it's almost like this ailment is viewed as a cash cow.

It's easy to say to get these lab tests done via IGeneX and Fry Laboratories, but it's not easy for a lot of people to pay for these services, all of which need an up-front payment and do not offer any type of payment plan.

Furthermore, every provider within a decent distance of myself also require up-front payment and anyone notable is $400.00 per hour up to as high as $650.00 per hour, or per visit (which I assume is around an hour). The 'cheaper' ones run around $250-300 with the 'cheapest' being a LLNP. The 'cheap' and 'cheapest' I mentioned are a group practice which advertise Lyme treatment on their website, albeit do not belong to any organizations such as ILADS or CALDA and have passed up 'proper' training to give themselves the LLMD or LLNP title, instead they use the title without training. They are *gasp* a FMG/CFS specialty office and treat using things like peroxide IV's.

So when you step back and look at the big picture, unless you're financially stable or get lucky and find someone on your insurance plan to treat you until you are 'cured' (I use that term as loosely as possible) - to be quite frank, you're screwed. I'm screwed.

It's an unsettling feeling to just play the sit and see game, especially when you know that there's really no getting better. It doesn't go away, unfortunately. My Rheumatologist looked at me with a straight face and told me she 'cured' my Lyme and now I have FMG - which I know is silly. My only affordable option is a NP who has had zero training in diagnostic, treatment and other pertaining information regarding Lyme Disease who wants to give me various herbs and a peroxide iv. I think I'll pass and use my money on the lottery, that way I can hopefully win and feed the proverbial cash cow.

The only part that really gets under my skin is that I know who I am is potentially at a risk here. I can deal with the pain, I can deal with the constant fevers and everything else. I don't even mind that I run into everything versus being able to walk past it. What I cannot deal with is the loss of my thoughts, that I have to really sit and think to write, type or speak a word because my word finding and gathering skills are significantly decreasing. My word placement is completely backward now when writing or typing. These are things I've always been passionate about, and I'm not eager to surrender them, not without a fight.

Having said that, I'm going back to college and God willing, I'll just treat myself in 4-6 years. :D

Pardon my ranting and rambling, but this always seems to be the side that's hush-hush or not discussed. The side that has an impact on tons of people who thought they were financially stable and then realized they can't afford to keep themselves from becoming terribly ill. It's the worst experience I can think of, next to losing my health insurance. Which I just did.

I probably need a nap, I have a gut feeling that I'm cranky. ;)

For the record, this is a second infection. I was sero-positive also with an EM rash (multiple EM's later displayed to show early disseminated disease). I was tested for some, but not all co-infections via standard labwork. The first infection was as a teenager some odd 15 years ago, my mom recalls a week of amoxicillin. The second was last July which treatment didn't start until September I believe, which was approximately 2-3 weeks of antibiotics.

It's hard to differentiate what is what as I had neurological complications prior to the July infection. I won't bother theory-crafting about if it's due to the past one as a teen or not, as I had a lot of health problems as a child which could just as easily be the culprit. Having said that, I have a severe midline shift to my right, I have a complete loss of peripheral vision, I am unable to focus (although I got some performance lenses to assist me). I have seizures, basilar artery migraines, cluster headaches, and other headache-related symptoms. I was diagnosed with: Temporal Lobe Epilepsy, Partial Complex Seizures, Juvenile Myclonic Epilepsy, Parietal and Occipital lobe seizure/dysfunction, and I'm sure I'm missing a few - These all came from different doctors, neurologist and epileptologists.

I also have; Trigeminal Neuralgia (right side, not bi-lateral), small bowel obstruction, endosalpingiosis, a lot of fibroids, complications with extremely swollen lymph glands (i mean its really bad and gross, I have pics), skin tearing/peeling, hair loss, memory loss, hand tremor, swollen joints and knee, ovarian cysts, FMG, CFS, IBS, and other stuff. While typing this I realized that it makes me feel 'broken' so I'm going to end that here.

It's really a shame, though.

I'm not screwed at all, my LLMD costs me $10 an hour. Co-pay with my insurance and he's a real LLMD. The other local ones here all take insurance.
I will write you privately re some names- wait what about Doc Y????

All of our local ones are insurance. The best ones in SF do cost a lot but so do any specialists- and truthfully, they see poor people for almost nothign.

HEck, if you truly want a cheap LLMD Doc Yang of Santee saw people for free for years and now only charges very minimally. Call her office.
Here's an article on her- whoops- forgot- can't post newspaper articles here- um- here is the connection to her website- she used to be 100% free.

http://www.dyfc.org/lyme.htm

She used to draw no salary. I knew her accountant, he was the brother of a woman who died and is on the Lyme Disease Memorial Page. Her office staff got paid through donations. She's incredible/ The last few years she does charge people a small fee because her office staff got upset-but I have heard if you really can't afford it she will stil TREAT YOU FOR FREE- you can't ask for kinder than that-

This is her addy & her phone number and HER email- all of which she wants open on the INternet- she;s a truly nice person- a good person- and a good Lyme doc- she TRAINED Doc Harris, junior, Steve Harris. He was her partner, not romnatic partner, medical office partner, for a few years...

Address:
10201 Mission Gorge Road, Suite A
Santee, CA 92071

PHONE: 1-619-596-4963

Dr. Therese Yang
yangdyfc@hotmail.com

The only thing people find annoying about her is that she became a doc for Lyme patients because Lyme patients are so screwed because she's a fervent Christian- and she prays once in a while with patients- (I'm not a Christian so it would annoy me but she is well meant).

And she IS a real LLMD.
Her husband is a doctor and they live off his salary.

If you go a google search you will find an newspaper article about her when they tried to take her license away (not spurred by patients by insurance companies).

If you can travel there and stay with friends, she is almost free.
Best wishes,
Sarah
p.s. and locally we have lots of cheap ones-

I've read a lot on her. I'm number 102 on her wait list. :(

She really is great. That whole mess where they went after her- they have gone after as many Lyme docs as they can for anything and everything- seriosuly! She is a good doctor. We had someone fly down to see her who is in full remission today. She didn't give her any pain meds because she was a tough chick who didn't want them. She is doing great now!!! She had 3 little boys in a row after getting better! A real success story-

May we all get full remissioN*)!!
Best remission wishes,
Sarah

Hi Ellie,
Try not to lose hope yet. I go to that well known LLMD in SF and I don't pay much more than Sarah does. He took insurance until this past year. He is normally expensive but as Sarah mentioned, he doesn't charge much for poor people. It may be hard to get in under that premise, I've been seeing him for a while. Hopefully, there are other LLMDs near you that are equally generous.

Please be careful about who claims to be an LLMD. There are some out there who claim to be so trained, but them "suggest" all kinds of crazy stuff to their patients who usually listen to their doctor.

Generally, doctors will stick with orals for a while to see if they will help, simply because there are likely to be more unexpected problems with an IV. Doxy is normally the first antibiotic prescribed and has pretty good brain penetration, but people have different levels of success with different antibiotics. Also, allergies limit what can be taken as well (PCN and anything related to it for me, I am massively allergic). I think which antibiotic is more important than how it is adminstered, in general. I think people's bodies make more antibiotic available in our systems when administered through IV, but if the antibiotic doesn't work as well as an oral antibiotic, that isn't going to matter as much.

It sounds like you've probably had every test involving your brain there is but SPECT scans are very good at both verifying the pressence of lyme (you get a big head!) and at tracking how you're doing over the long haul.

I'm new to the forum but I've had lyme at least 23 years, was diagnosed four years ago (by accident actually) and my symptoms are almost all neuro. I can really relate to the lyme brain. It is very frustrating sometimes.

I hope you get over this quickly, just make sure you do not go off antibiotics too soon.:hug:

Yeah, I have learned a lot about the ones who claim to be something they're not. I research everyone in advance and also call to verify their training (CALDA/ILADS). I've found a couple 'round here who are fibbing. :)

I've checked into SPECT scans and thankfully AMEN is somewhat close with two locations in CA with someone trained to look for Lyme brain damage. The cost isn't in my budget, one wants a pre-pay then they superbill insurance and the other will take copay and bill insurance then you. However, I just lost my insurance so I'd be a 'holy crap pay it all' patient. I'm going to have to ride it out a while and then hope everything just takes it's time if it decides to progress until I can get this all back into order.

Update: I'm leaving NOW for my appt with Dr. Yang

She said she can 'fix' me, but that I have a very long road ahead of me. She has to go for co-infections first and then Lyme. And it's approximately 6 months or longer before the Lyme will even be addressed. She said some of the things can't be reversed, but hopefully most of it can.

It was a good feeling, but I don't think the treatment is going to be an option for me as I cannot afford to even have the testing she wants done. I made a larger post earlier today to get some of those things off of my chest, but I'm just not feeling to well right now.

sorry to read that-
I am sure she can help- I wish I was rich, I'm not- I would send you the $ if I could!!!
best wishes,
Sarah

new to lyme and this site

Quote:

Originally Posted by Ellie (Post 185009)

im notsurehow to reply, i never talked on forum ever. but ellies story braught tears to my eyes cos it sounds similar to mine, for the first time i meet someone who has been where ive been. i belive i got lymes when i was 12 and preliminarily dx with juvie rheumatoid arthritis. too many symptoms to list, my arm hurts too much too type too good. i am now 40. been to specialists, misdiagnosed over the years. now i find out, not only is it lymes but late stage neurological lymes. i can take the pain, physical discomfort, but i lost my mind, had psychotic episode few yrs ago, my husband divorced me. i now have the same pains in the same migrating joints and muscles but i have short term memory loss and i get lost driving around. i even got DUI when i was not intoxicated, just confused and hurt. it is a joy to read your stories, yet it is bittersweet because so many people suffering. i grew up in NJ cruised the woods every day after school, studying insects, birds, local wildlife. i had such a voracious appetite to learn as a grade schooler. shortly after i got sick. rash joint pain fatigue, insomnia i lost the use of my arm temporarily the works. it just wasnt well known back then. i never heard of lymes then. right now i can think good enuf to right. but tomorrow ill probably forget the name of this forum, or that i even joined. but now i know im a survivor.

Quote:

Originally Posted by Ellie (Post 188270)

Ellie,

Can you please tell me the contact info for AMEN and where the 2 locations are in CA? My son has Lyme disease, and we desperately need to look into this SPECT scan.

This is Dr. Amen's website:

http://www.amenclinics.com/clinics/

I am assuming he is the same "Amen" mentioned in this older thread.

He specializes in SPECT scans of the brain.