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Lyme , just sick of being sick

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Posted 10/28/2012 12:12 AM (GMT 0)
I don't know how long I have had Lyme, Looking back it's been years on and off . I just have to vent, I am sick of being sick. I have no control over my body any more. I just want my life back, I am sure everyone pretty much has felt the same way one time or another. I am tired all the time, in pain all the time. I am just getting fed up. I can't afford a Lyme doctor, and I just don't know what to do anymore.

Maybe I am depressed, I don't know but lately I feel lost. I think there should be more help out there, more research. I am getting so frustrated, because I thought by now I would be feeling much better. Today I feel just horrible, and I know we have to take the good with the bad, but I am not seeing much good.

I hate Lyme, hate the way it has taken over my body and my life.

I am starting to think the doxy isn't helping me, I feel like I may be getting worse. I don't know.

just me.
Posted 10/28/2012 3:01 AM (GMT 0)
Just Me:
I am sorry you are not feeling well. I can relate. Did you get diagnosed with lyme through blood work? I do not have a definitive answer. I am suffering but not sure if it is lyme. I have had tons of symptoms over the years but lately the worst ones are tingling on top of my head, neck pain, and a slight feeling of disequilibrium. Think i might have candida also. I had some positive bands but igenix did not give it a positive result. What are the details of your situation?
Posted 10/28/2012 12:16 PM (GMT 0)
Yes I had a positive blood test for lyme, My son and husband are positive as well. I started with the burning sensation in my hands, feet, then it went kind of all over. My face , and head was the last part of my body that has had it. Like you I had different symptoms , the other doctors told me it was stress, and sent me home. I just got worse , a few months back I tried to get out of bed and couldn't walk. I went into the ER they told me I had a infection and sent me home. My family doc wanted to see me the same day. She had been on leave for over a year.

When she saw me, she ran all kinds of test, I was deff in vitamin b, and My vitamin D was very very low. I explained the burning, and being completely exhusted, not to mention the brain fog, the forgetfulness. The list goes on and on. She tested me for Lyme, and it showed a positve read.

Once I began the doxy , I started with bad herx, or more like small seizures. Last night was the worst one for me so far. I am seeing the doctor all the time, she is going to monitor my progress. I am hoping in the winter to see a Lyme doctor, it's just expensive and right now I can't afford it.

I have been on doxy for around 5 weeks now. I am detoxing with baths, eating friut, I juice. Also I now have gluten resistances so I have I can't eat wheat products.


It's just very stressful, and if you have the symptoms, I would say you probably have it. It can take years to get a positive read. If I can help you let me know, people on this website is very nice, they have helped me through many bad days.

just me
Posted 10/28/2012 1:48 PM (GMT 0)
Hi there,

I'm really sorry that you're feeling so ill at the moment.

My worst time occured when I was taking Doxy,the pains and a general feeling of weakness were often nearly impossible to bear.I managed to stay on the course of treatment,but only just.

Since then I have been taking Cumanda/Banderol ( pulsing) together with Samento and I'm improving very slowly.I have great days,good days and lousy days still but I have the feeling that the really bad days are getting fewer by the month.

You spoke of unbearable pains,do you have swelling,too? I have noticed that the degree of swelling ,is pain related.this is typical of Bart( so I have been told)

Also ,do your pains migrate? hourly, daily? Are they constant in severity?

You will beat it eventually,why shouldn't you?; until then you've got to keep fighting the good fight.

All the best
Tickled
Posted 10/28/2012 6:44 PM (GMT 0)
OH, Justme!! I'm so so sorry! Sometimes all of this can just get sooo overwhelming!! I can't count how many times I have said those exact words! I'm sick of being sick!! I also said I was sick and tired of being sick and tired a whole lot - my kids would chime in with me -in a very light & teasing way! It would work too, I'd end up with the giggles with them! Now I just have to repeat it to myself since they are all grown up!

What has your doc said about the seizures? It should be very concerning to her, as seizures are a serious thing!

When I started having my small seizures, I decided enough was enough. I was no longer going to use abx since they were causing me to get so much more ill. **I am not pushing, only suggesting** Maybe it's time to consider using a natural protocol? If you can't seem to detox enough, no matter how much you detox, it could be a sign that your body just isn't going to tolerate the harsh way abx can act in the body.

Just a thought. There are quite a few of us here that are using the natural protocols and are healing well. (no pun intended, I promise!!)
Posted 10/28/2012 11:01 PM (GMT 0)
Peripheral neuropathy is a big symptom of Bart, which I have. The burning sensations can be maddening. Since I have mostly Bart symptoms, I am pretty much treating myself as if I only have Bart and I'll deal with the Lyme later. But if you do have Bart, fruit isn't a great thing to be eating. The no wheat diet is a great start. But if you are being treated for Doxy alone, that's not helping kill off Bart, if you do indeed have it. Bart is a protozoa and needs to be treated with an anti-malarial whether it be pharmaceutical or herbs. I have to say, I couldn't tolerate the abx so I'm on an herbal called A-Bart and while it's gentler on my system than abx, I still know it's working because I've herxed a couple of times! Anyway, just wanted to point out that you could be dealing with a co-infection that is still running rampant in your system. good luck and I'm sorry you're feeling so lousy.
Posted 10/28/2012 11:31 PM (GMT 0)
My doctor just tried to give me a blood pressure medication for the seizures like episodes that I am having. I am not taking them because the medication can cause a heart attack. I honestly think If I could somehow get the burning to stop, and the seizures like episodes I can fight through this Lyme. I was thinking of finishing this round of medication and maybe talk to her about doing a more natural approach. I read online about dr J. program, and I am thinking about trying it. I don't really think the doxy is working for me. I mean I am not a doctor, but I feel horrible on them, also I think I may have some co infections also. I am not very familiar with all of this stuff I am just learning, and also I forget half of what I read now.

I just really wish I could find something to help me. I am tired of being in bed all the time. I am just tired of being sick. And People don't understand , they really don't .
Posted 10/29/2012 1:21 AM (GMT 0)
It's like you took the words right out of my mouth! I was just saying that to my husband last night. I'm sooo sick of being sick! I'm 2 months into treatment. I have had a few good days, but right now I'm back to being extremely ill. The tingling and burning and pain is maddening. I completely understand what you are saying. I'm new to this also, but from the sounds of it, most people do get better, but it can be a long, slow process. And usually it gets worse before it gets better because of herxing. It seems like it takes months, not days or weeks, to see improvement. It is AWFUL! There really aren't words to describe how ill you are, huh?!?!? The infection is so systemic, it really takes its toll and can be very frightening. Hang in there! You're at the beginning of this process and it will take some time to figure out the right treatment plan.
Posted 10/29/2012 10:41 AM (GMT 0)
I know what you mean Mystery , It's like with Lyme the symptoms change so much it's hard to put them into words. I have just been having a few really bad days, I will get a good day soon, I hope. This disease takes so much out of us, affects our bodies , and our minds. I get so frustrated with it, I am sure everone yone else does also.

I am looking to add mercury to my pill supply, I read it helps a lot, and hey it's worth a try.

Hope everyone has a great day.

justme
Posted 10/29/2012 11:47 AM (GMT 0)
Hi justme,

I just wanted to ask you. Are you seeing still seeing a regular family doctor for Lyme? Are you only on doxy and is it a high dose 400mg or more? Was your case caught extremely early? If you have a late stage infection the chances are near 100% that a general family medicine doctor will not be able to help you. Most will not have any idea how to approach Lyme with any treatment other than the one recommended by the IDSA which unfortunately, fails a TON of Lyme patients especially after they pass the acute stage.

As you probably know, doxy only treats Lyme in one form: spirochete. It doesn't address the cyst or cell-wall deficient form. It also doesn't adequately address bartonella or babesia which are very common co-infections to have.

For me personally, I would not be comfortable with doxy monotherapy. I have read studies that it can increase the prevalence of cystic Lyme by 200%. Usually for pure Lyme, LLMD's combine a macrolide, tindamax/plaquenil or flagyl for the cystic form and doxy, ceftin or amoxicillin/probenecid. That will hit all three forms of Lyme.

The LLMD's on the referral lists are usually the ones with the most experience.
If you can't find one that is affordable or nearby, try an integrative medicine practice, homeopathic, herbalist or a naturopathic practitioner. Most of these health professionals are far more open to diagnosing and treating Lyme.

Doxy is not a great med for me either. I spent many months on it in a combo and felt like I was steadily getting worse with pretty much no "good" days. I now switched to an extremely strong group of abx and I feel either okay (for a few hours) or seriously ill. I prefer that to stagnantly moderately ill 24/7 though lol.

I think that I would probably stick to herbs unless I was going to do a strong abx combo, but either way I think you need a knowledgeable doctor or practitioner to help you. Good luck!
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