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» LymeNet Flash » Questions and Discussion » Medical Questions » Better without treatment?

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Author Topic: Better without treatment?
jenny317
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Okay. Basically, I got lyme in 2000, and didn't figure out what it was until last year when I had a positive IgM western blot. The only antibiotics I've had since 2000 are three random short-term courses and 1 three-wk. 200mg/day doxy course by an infectious disease doc. who thought my "story" at least warranted a litte doxy. While on the doxy I felt MUCH better but then got worse again almost immediately after it stopped).

Since then, I go from feeling awful for six months (joint pain, chest pain and palpitations, high b.p., headaches and fatigue along with times when I have high blood sugar) to a period between Feb. and June of this year where I felt pretty good with most of my symptoms subsiding and leaving only fairly minor joint pain.

I'm afraid of what the disease may be doing to my body, but I'm discouraged by the extremely long courses of treament everyone seems to be undergoing with not much success. I'm not sure that I have the stamina to go through IV antibiotics for that long and have it not work. If it weren't for my daughter and the need to get her tested for congenital lyme and treated, and my responsibility and desire to take care of her and raise her, I'm not sure I could even think of going through treatment.

How are you all doing this? How do you start that second dose of IV treatment knowing how hard it was and that the first time failed? What do the doctors say to explain why it didn't work and why they think another round will be different? And how do you afford it all without a guarantee of success? i just can't believe what a nightmare this all seems to be.

Thanks for listening.
Jenny

Posts: 14 | From Indianapolis, IN | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
desertcanyon
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Jenny,

Thank you for asking this. Very well put. I've been wondering the same things myself.

I look forward to the answers you get, and I plan to read the "Success Stories" topic carefully under "General Support."

--------------------
Grant that I may not so much seek to be consoled as to console; to be understood, as to understand; to be loved, as to love

Posts: 61 | From Atlanta, GA | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
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You can also read my story at http://tinyurl.com/2ubzoz

I would treat with oral antibiotics for at least a year and see how you feel. When you read my story, you'll see why it's not wise to ignore Lyme.

I didn't know I had Lyme for most of my life. Now in addition to the problems listed in my story, I have A-fib, Raynaud's and Sjogren's.

TREAT!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Pammy
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Jenny,
it really is a nightmare...but a lot of people have gotten so much better.

I think when people get better they aren't on the boards much so make sure you read the success stories.

And remember that many, many people visit the site for awhile and then stop when they feel better and don't even write their success story.

Do you have an LLMD? I would really suggest finding one if you don't.

I was never, ever one to take abx or any medications...even Tylenol. So it was a hard decision for me to take the abx.

But, I've been on different ones for over 1 year. I generally feel much better.

I have energy and feel good most of the time. You don't necessarily have to take the iv abx. I didn't.

I definitely don't think it's wise to ignore it.

Good luck...I know it's tough making these decisions.... [confused]

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jenny317
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I'm discouraged, but I'm motivated to find a doctor and get treatment. I'm very much more apprehensive about taking IV antibiotics than I am about taking antibiotics long term.

I'm also quite angry about my whole experience. While I totally blame myself for not going to the doctor when I had the bullseye rash (no tic, so I didn't believe it could be lyme). And I also blame myself and take responsibility for my daughter's risk of having this because I didn't know what it was. But my experience with doctors from the point in April of 2007 when I suggested the test has been unbelievable in terms of the closed-mindedness of the doctors I've seen. Some have actually literally run away from me. (This does happen sometimes as I'm also a lawyer and doctors tend to be funny about that)! But to literally be looked at like I'm a total whack job for even suggesting lyme still makes my blood boil.

But the funniest thing is that I'm a huge skeptic myself. If I wasn't experiencing this, I'm not sure I would believe it was this either. But I am, and I do.

Posts: 14 | From Indianapolis, IN | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
Shosty
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I totally relate to everything you wrote here. I am a moderate, skeptical person. I had similar reactions with MD's (even worse when taking a child to the MD's), but also found the local Lyme support group (at the time, several years ago) to lack understanding of my caution and skepticism.

I would do oral antibiotics (we have never done IV's) for 12-18 months. Almost all of our improvements occurred in the first year, then plateaued, and, I wish I had gotten off then.

You can find a doctor who will do this, but also is covered by insurance, by calling the Lyme Disease Fdn. in Ct. It is not necessary to use the LLMD's who work outside the system, if you are located in an area where an LLMD is available to do treatment that is covered by insurance.

Some will disagree with this but I did not have any other financial choices.

The haunting feeling about our children is something a lot of us live with. Two out of three of my kids have been treated because they tested positive. The third, who seemed the most symptomatic, tested negative and has not been treated. I have read that Lyme is only transmitted if it is active at the time of pregnancy, or recently acquired, because otherwise the bacteria are hidden in tissues, and not in the bloodstream. I breastfed all three of my kids for 2-3 years each.

I have not seen definitive studies and there is a difference of opinion on transmission in the uterus or with breastmilk.

One other thing: taking insufficient antibiotics, such as your 200mg, will suppress initial symptoms (meaning the acute illness) without eradicating the infection.

p.s. one of my kids was totally better in 3 months of abx...4 years later, at 16, she is a dancer...there is hope! The rest of us developed some autoimmune issues w/Lyme, but are living our lives and doing alternatives now...

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sparkle7
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It's a very hard decision. Everyone's case is different. I had Lyme untreated for over 9 years before I found out. I think if you take the abx right away, you have a better chance of a cure.

If it goes untreated, the abx may not be effective. It also depends on if you have co-infections, viruses, mycoplasmas, heavy metal toxins & other toxins.

I gave the abx 8 months & I started feeling that they were doing more harm to my body than good.

There are some people who get well & don't post but there are also alot of people who don't post because they feel that they will never get well. They just try to take maintenance doses of drugs & do the best they can.

I've heard from some of them. This is a very difficult illness. There are no straightforward answers.

To my mind, alternative therapies using herbs & the more recent posts about using infrared light are the way to go. I don't think endless long courses of abx are healing to the body.

Some people do OK with IVs or oral abx but then they may get ill with fungal infections like candida or C. Difficile. Even after all of that - they still may not be "cured". You have to weigh the pros & cons & make a decision that is comfortable for you.

My doctor never pushed long term abx to me. There just is not enough evidence in either direction that they cure everyone.

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desertcanyon
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Thank you, Sparkle.

I too was on antibiotics for 8 months (just doxycycline - 400 mg/day). I felt that it helped a lot, but I've been off for 2 months, and all kinds of things have been acting up (not just lyme symptoms), which makes me think that maybe my immune system took a beating from from the antibiotics.

But honestly, I'm very anxious to get back on antibiotics right away. The thought of the lyme bacteria growing back unchecked really concerns me.

I have a friend who was totally cured. She suspected lyme immediately, prayed for and aggressively sought out an LLMD because she was getting the run-around from traditional MDs. (Don't know exactly how long this went on; I think it was about 6-8 weeks until she got treatment).

The LLMD treated her orally with doxycycline (300 mg/day) combined with clarithromycin (1000 mg/day). I've been told that this was a strange combination because the action of these two antibiotics is very similar.

But her doctor had testimonial letters all over his walls from people who'd been cured (including people who'd gone for years being sick and undiagnosed.) I do NOT know if he tailored his treatments individually or not; I just know that she was cured.


His approach was to continue treatment until:

1. Three consecutive months symptom free (no herxheimer reactions)

AND

2. Two consecutive negative blood tests (I don't know what tests or labs they were using)


She was treated for a little over 1 year (in 2000-2001) and has now been symptom free for almost 8 years.

The only other thing she was taking was Primadophilus probiotics.

She may have been taking some basic supplements, but I do not think that she is a big vitamin/herb person.

Unfortunately, a couple of years later, when she tried to track down this LLMD for a friend, she was unable to find him. I don't know if he moved away, or was run out of business, or what.

--------------------
Grant that I may not so much seek to be consoled as to console; to be understood, as to understand; to be loved, as to love

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hezzer926
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did this person follow a special diet during the year she was being treated?
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desertcanyon
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oops, I forgot one thing -- the LLMD also put her on the antiviral acyclovir (400 mg/day) to combat the Epstein-Barr virus. But I think that this was only short-term at the beginning of her treatment.

--------------------
Grant that I may not so much seek to be consoled as to console; to be understood, as to understand; to be loved, as to love

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desertcanyon
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Hezzer,

Not that I'm aware of. She is not a "health nut" like the rest of us. [Smile]

She did say that, unlike some other people, her appetite was NOT affected. [lick]

She also said that she experienced no side effects, except sunburn on her hands because she works outdoors, and although she diligently used sunscreen, the back of her hands ended up getting sunburned due to handwashing.

So at some point, her doctor switched her from doxycycline to minocyclin, but from what I understand, these are almost indentical, except doxycycline makes you more sensitive to the sun.

Okay, now I think I covered everything. [Big Grin]

--------------------
Grant that I may not so much seek to be consoled as to console; to be understood, as to understand; to be loved, as to love

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Lymeorsomething
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Lyme and co's can be a multi-front war and it takes time to make any headway. I'm sure many can relate to your apprehension about abx. I know that I've doubted my diagnosis at times especially when there is no progress.

Then again I have good supportive evidence of infection with not only lyme but with babesia too.

It took infectious mono to really make my lyme apparent. Before that, I had subtle symptoms but not anything too troubling. I believe lyme was there but flying under the radar so-to-speak.

Perhaps your symptoms are tolerable without abx because you're not challenging the disease and because your immune system is functioning adequately.

However, one bump in the road--flu, another infection--and all bets are off. For this reason, it may be a good idea to give a longer course of meds a try.

Some meds have fewer sides too. I'm on bicillin currently and it's a piece of cake...though no progress yet at the sixth week mark....

--------------------
"Whatever can go wrong will go wrong."

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