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Old 05-02-2013, 06:58 PM   #1
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Frustrated!

Hi! I am glad to find this board! Thanks to whomever started it about LD.

I am not sure if I have LD or some other tick-related disease. About 5 years ago, I removed a tick from my stomach. It developed about a 12 inch rash. But, because it wasn't a bulls-eye, it was nothing to worry about, says idiot doctor. (I can just hear someone thinking, UH-OH!)

Since that tick bite, I have had low-grade temps, (but not high enough to worry about, according to idiot doctor),

Fibromyalgia (caused by a need to see a shrink, according to idiot doctor) and it's just "over-active" nerves (said the idiot rheumatologist), which is a variation on "it's all in your head" that they were calling it a few years ago

Chronic fatigue syndrome (that will go away if I just go exercise more, according to the idiot doctor). Exercise 5 minutes a day if that's all I can manage and "work up" to it, was the suggestion. Like, when getting out of bed is the most energetic thing I can do, and wouldn't do at all if my bladder wasn't full, then exercising 5 minutes is impossible. I'm talking some serious "fatigue" here.

A new diagnosis of arthritis in multiple joints including "rare" arthritis sites like elbows and jaw (but that's just because I'm aging, according to the idiot doctor), like how many elderly people get arthritis in their jaws and elbows before hips and knees?

High Rheumatoid Factor (but not high enough to mean anything, according to the idiot doctor)

High white blood cells (but not high enough for an "acute" infection, so nothing to worry about, according to the idiot doctor . . . and besides, I have no symptoms of an "infection" DUH!)

Elevated liver enzymes (but since there are no other symptoms -- are you kidding? -- then it doesn't mean anything, according to the idiot doctor)

Depression, anxiety, and mental status changes (but what can I expect when I really just need a shrink, according to the idiot doctor), like being active then can hardly get out of bed wasn't a cause for depression on its own merit

Getting the picture? I wonder what labwork is for, if doctors ignore the "normal range" and decide that something isn't important when I have abnormal labs and symptoms?

So, it gets better, or worse, depending on your point of view, I guess!

Two weeks ago, I got another tick bite. This time, the nice little tick didn't leave any doubt about it, because the bite was an ugly, inflammed, dark-bruised, nasty looking bite about the size of a 50-cent piece at the time I found it, that was getting bigger every day and the center turning pale. I watched it for 2 days, decided it was getting to the point of real concern, so I got in my car and drove to the emergency room. I waited two days because I'd been through all this before. But, this time . . .Happy day!

The doctor at the ER -- ER because it was 2 weeks before I could get an appointment to see my regular doctor -- gave me a 3 weeks course of Amoxicillin, because I don't tolerate Doxy very well. And drew a bunch of blood for the lab.

Guess what? After battling all these symptoms for 5 years, after just 3 days of antibiotics, I was feeling better than I have in years! So all I needed after all this time was a common antibiotic?

Notice here that despite me reporting a tick bite and many symptoms and lab that certainly suggested that something was going on, not one doctor did a PCR or Western Blot, or even a blood smear. If nothing showed up on a chem profile and CBC in the really-really-high range, then there must be nothing wrong! Don't these idiot doctors LISTEN???

I am elated that the antibiotics are making me feel so much better . . . and incredibly frustrated. I actually cleaned my house this week, and felt like doing it.

I will beg, borrow, or steal whatever antibiotics I need if idiot doctors don't start listening to me, and start taking this real seriously, because this has completely destroyed my life! Hint --> I don't have much of a life anymore when going to the grocery store is all I can manage for an entire week.

I need your advice. What needs to be done? Not what some idiot doctor "thinks" but what REALLY needs to get done? Will 3 weeks of antibiotics do it? Is this going to relapse? I don't care about whatever group, study, or other group of idiots decide is the "best" things, I'm talking about what you all KNOW will help cure this or at least let me stay feeling no worse than I am right now on the Amoxy. My energy is returning. It feels like I've been living in a deep mental fog, and I'm driving into clear weather. I so much don't want to go backwards. I so much don't want feeling this good to end. What do I need to do? When the antibiotics end, will I start feeling bad again? Do I need longer term abt's than 3 weeks? What? Tell me what your experiences have told you, so I can do it. Help!

Thank you!

 
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Old 05-16-2013, 05:34 AM   #2
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Re: Frustrated!

Hi Cheryl, the best thing for you to do, beings g.p. doctors do not treat Lyme and co-infections with the proper protocol. Is to seek out a LLMD, (Lyme Literate Medical Doctor).

Your right , 3 weeks of antibiotics is not long enough. There are 3 life stages to the bacteria, so it needs to be treated with more than one type of antibiotic. Then there are over 300 different strains of Lyme, and the labs don't test for all of those. Same with co's such as babesia, there are different strains. So it is hard to detect what strains we have.

There is a thread above how to Share LLD names. And from where you are sitting, you might be able to find a Lyme support group in your area, city, county, or state. There may be a contact name that you can request a LLMD name. Many do not take insurance, so it will be a out of pocket expense.

I hope you find your answers soon, and get on the right treatment.

Jodie

 
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Old 05-22-2013, 03:40 PM   #3
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Re: Frustrated!

Thank you for your response. You gave me some valuable information that I didn't have. I'm not sure yet what I want to do. One thing is certain, though, is that I'm not ending antibiotics until I get a clear idea of what should be done. . . SHOULD be done, not necessarily what is commonly done. That is going to take more research. I'm finding a lot of information that I need to review and think about, not the least of which is the politics of this. I am absolutely certain that I'm on the right track. I've had too many reduction of symptoms -- subjective and objective symptoms -- while on Amoxil to think that it isn't. I've suffered for over 5 years. To have major reduction of my long list of symptoms is significant. Such as my blood pressure has typically run around 160/90 and no medication could get it lower. Within 3 days of Amoxil it dropped to 120/70 and stayed there for the last 4 weeks (I'm still on Amoxil). My pulse always run around 110-120 even at rest. It's now 76 and has been since 3 days after I started the Amoxil. The profound fatigue is abating. And on and on. I refuse to give up, and I refuse to go backwards. Now, I need time and information so I can make intelligent and informed decisions and demands from healthcare providers. Thank you all for this board, and especially your response.

 
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Old 05-23-2013, 07:37 AM   #4
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Re: Frustrated!

Cheryl, it is a long hard road. BUT learning, reading and talking to others either support boards or in person. It will help you to make better decisions for YOUR health.

Hope you find out what is bothering you, and the proper help.

Jodie

 
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Old 05-23-2013, 03:08 PM   #5
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Re: Frustrated!

I understand that you have seen many doctors, but your might want to look into a natural path! That's what I did and what diagnosed with lymes disease! The disease has been affecting my life greatly for the last two years! Hope you feel better!

Milagro

 
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Old 05-23-2013, 03:10 PM   #6
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Thumbs up Re: Frustrated!

I understand that you have seen many doctors, but your might want to look into a natural path! That's what I did and what diagnosed with lymes disease! The disease has been affecting my life greatly for the last two years! Hope you feel better!

Milagro

 
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Old 05-24-2013, 07:37 AM   #7
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Re: Frustrated!

Milagro:
What were your symptoms and what natural path did you take and how are you doing now? As much info as we gather from other people the better off we are to make decisions on how we want to handle our illness. Thanks. LaLa

 
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Old 05-25-2013, 08:23 AM   #8
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Re: Frustrated!

Yes, absolutely on the natural path also. I found some good articles from Garth Nicolson, and Walter Berghoff that I've found very helpful. Dr. Nicolson outlined many things in addition to abx that were necessary to healing. I'm already going that way.

I am becoming more and more convinced that the problem is Lyme. I know I was bit. I know I had a large, round rash. And I know that's about the time my problems started. It's the most likely culprit, and the one I've believed all along. Because of it, I'm now disabled and getting social security. In my community, no doctors will take Medicare. None. Zip. That's a political story that I won't get into now. The only medical care is a low-income clinic. It's the only game in town or for as far a drive as I've been able to find. Doctors don't like Medicare. And I can't afford to pay for care out of my pocket unless I live under a bridge and stop eating. I'm sure the situation isn't uncommon. My point is that whatever is done, I'm on my own. I won't get a lyme literate doctor. At the clinic, I'm lucky if they listen to me at all about anything. You have to be squirting blood from an artery, or no heart beat before they listen. They certainly won't go beyond AMA guidelines and only with a + lyme test, which I've tested negative after I demanded the test a couple years ago. (I watched "Under Your Skin,")

One concern I have with the Amoxil is that the little buggers are most likely into my joints. The Amoxil isn't helping any of the arthritis symptoms. Very painful joints and muscles, but x-rays show no arthritis. "Just fibromyalgia." So I'm wondering if another abx is more able to penetrate into the joints???

Cipro will penetrate into the joints, but I'm finding mixed information about Cipro for Lyme. Some in vitro studies show that it's effective, but in vivo says no. Mice show Cipro is effective, but no clinical trials I've found show that it's effective in humans. Does anyone have any experience with Cipro? Don't automatically rule it out, please answer if you have experience with it one way or another, or know of a clinical trial I can review. Thanks!

 
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Old 05-25-2013, 08:42 PM   #9
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Re: Frustrated!

SimSims;
i developed an infection on my foot from getting cortisone injections for a neuroma. The podiatrist cultured it an it came back with a bacteria call serratia. i have no choice but to take cipro for this type if infection. i was diagnosed with lyme based on symptoms and 4 ind bands and 2 positive bands on my lyme testing through igenix. The cipro did not cause any big problems. may a little nausea. LaLa

 
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Old 05-26-2013, 09:15 AM   #10
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Re: Frustrated!

Too bad your foot infection isn't responsive to an antibiotic that also kills Lyme!

Cipro is a very useful antibiotic for many different bugs. The question is if it attacks burgdorferi. Since my last post, I've found a number of clinical experiments. They are showing that Cipro is one of the better antibiotics against Lyme in vitro (in the test tube). But, a dismal failure in vivo (in a body). In this regard, it is like erythromycin with good test tube results, but doesn't do it in the body. So, I think Cipro is out.

From my research, tetracycline seems to be doing best. Next best is Zithromax. Both are good in vitro and in vivo for killing the little beast burgdorferi. Both kill it outside and inside the cells.

My concern is to use an antibiotic that kills it intracellularly and extracellularly. Treating with an antibiotic that only kills it outside the cells, for example, seems doomed to relapse since the beasts hide in the cells also, and once the abx is completed, they emerge from inside the cells, and here we go again. At least this is what my research has found.

There's so much contradictory information out there . . . not enough research, no doubt, because we are all crazy, and all the scientists in the rest of the world are delusional and the only sane doctors are at the AMA writing treatment guidelines about things they have never done day 1 with any real research! Idiots!

So, all I can do is sift through the mountain of information out there and draw my own conclusions. I'll let you know how it goes!

 
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