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Getting worse, not better. Losing hope. Very sad.

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Posted 11/21/2015 5:11 AM (GMT 0)
I'd really appreciate some feedback or encouragement, I'm in a very bad place right now.


I was diagnosed with lyme and positive on my IGENEX testing, negative cdc (barely). I started taking the Buhner lyme protocol, 100 MG of doxycycline, and another antibiotic (to which I cant recall) for about a month.

I finished both, and have noticed absolutely zero herxing, zero improvements. My worst symptoms are in my face and muscles. I find it difficult to speak, as if my lips, cheeks, and tongue are weak or numb. (Does anyone else get this? It's 24/7 which leads me to believe I have MS or ALS or worse diseases.) I also have full body twitching and a plethora of other symptoms.


Could it be possible I just don't have lyme? The thought makes me very sad, because if it's not lyme, it's something far worse. I am literally lost. I don't know what to do or try next and feel like if the above treatments didnt work, what could???

I'm so close to just ending my life because of the agony this is causing me.
Posted 11/21/2015 5:36 AM (GMT 0)
Ok, first of all, ending your life over something that you think you have that is worse than Lyme should give you some thought before doing anything so extreme, because once done, there is no turning back.
Second, you have not been in treatment long enough to give yourself a chance to kill these monsters and heal. A month of antibiotics is not even enough to kill one cycle of the Lyme bacteria.
I get the feeling you are very young and this must be scary, but please know that this happens all the time, old or young, even to children, and we just have to take life as it is, and make it better. I have 3 children and myself affected by this, ending our life is not an option, we are all a lot better, but it takes a lot of time and perseverance to get there.

DId you detox at all? Do you have any particular symptoms that are more specific to co-infections?

I know what you are going through, but I had it much worse, there is nothing worse than seeing your kids suffering. If the treatment you were on didn't work, it's time to find another and try it. Not everyone herxes--I did not. And not everyone gets well after 1 mo of treatment--I was on abx for a full year, changing abx combos and try to heat these infections from every direction. 1 month is simply a joke: Lyme multiplies every 30 days, so you may have not even hit the babies of the bacteria you already having, letting it continue to trive. Do you have a LLMD dr? Life is worth living, don't give up! Yes, if you had an IGENEX positive test, you are infected. Stay on track, don't look for worse because most likely, it's Lyme and co-infections, not something more serious.
Posted 11/21/2015 6:33 AM (GMT 0)
St0rch
I went back and looked at your last 10 posts. You were going to do the one month of low dose doxy, the other abx and some buhner starting sometime in August. Did you only do that for a month? Have you been doing something else since then or not treating?

I'll watch for your response so I can respond to that.

You may very well have made improvement but feel so awful that it's hard for you to distinguish. On an agony scale from 1-10, 9 is still really hard to deal with but soon it will be 8 and then 7 and before you realize it you will have days that part are 4 and part are 6. For someone who has never had Lyme that would be crappy. For us that's hot darn!

It's Lyme. Your body wouldn't produce antibodies to fight against those specific bands unless they were present in your blood stream.

Hang in there, we are all here for you

Janet
Posted 11/21/2015 7:15 AM (GMT 0)
Dear new member,

what you described as treatment is a joke.100 mg Doxi is something to start with because of extreme herxing but you have to get to 400-600mg.And of course with a cyst buster and another antibiotic, and now we are just talking about killing the borrelia .I think you were not treated by a LLMD!

The fact that your sympthoms are around your tongue, mouth shows that you probably are dealing with bartonella coinfection also.Doxi+Azitro can be a starting treatment with this, but you have the treat this confection a minimum of 6 months.

As regarding your very black thoughts they are generated by the fear from these symptoms and by the infections themselves.Please do not let in to them.Please search for an LLMD.You can start a thread with-Looking for LLMD in the area where you are in.

Do not give up,Search a good Dr. and treat.There is a possibility that you get rid of all of your symptoms and get your life back.

Good luck to you with all of this.
Posted 11/21/2015 9:17 AM (GMT 0)
You can't kill yourself, 'til I do, my friend! Keep trying, everything you can, until something works. Then, when all's said and done, at the very least, you can say you gave it your all.

But, really though, it's your life. I wouldn't blame you, honestly. I'm just saying, I've got it pretty bad too, and with so much more than just the tickborne infections, and I think about that stuff every day, multiple times, yet I'm still trying.. somewhat.

Still, I can't say that a part of me doesn't know how close to hopeless it is, and that I'm probably just wasting my and everybody else's time.

Gotta try though.

There are beautiful, happy people, underneath all of this crap. It's just the matter of finding them again. It sucks, I know.

I hope some of the words spoken here will help you, hope you find a good doctor, adequate treatment, somehow.

<3
Posted 11/21/2015 1:16 PM (GMT 0)
So many here completely understand the dispair. Right now though I would bet it is the pathogens are making you feel this way. When u wake up each day feeling like dog poo (+++!), it is a nightmare!

But as others have said, you need more treatment. It won't be an overnight success, but you can slowly begin to feel more human.

Do you have a doc guiding you? Do you have family or friends who understand & can help to be there with u for a LLMD appt? Please hang on & have someone help u.
Posted 11/21/2015 1:23 PM (GMT 0)
So sorry you are struggling so much.

Truly, it doesn't sound like you treated long enough. ILADS recommends treatment for 2 months past complete symptom resolution.

If you read stories on here, you'll find that most of us need to treat for many months and often closer to a year or longer. It all depends on what shape the body is in when it was infected, how long the person was infected before starting treatment...and what infections the body has.

Most people have more than Lyme. Bartonella is so common that some scientists think Lyme should be considered a co-infection.

And, the fact that you are feeling worse leads me to believe that you are herxing.

We can help you better if you tell us exactly what you've done for treatment.

Hang in - things will get better as long as you continue treating.
Posted 11/21/2015 6:12 PM (GMT 0)
St0rch,

Most likely your are dealing with a co infection on top of Lyme disease. Is a LLMD treating you? You are going to need more than a month of treatment, don't be disappoint you can do this. Remember you are going to get worse before you get better. Couple years ago I had horrible neurological symptoms numbness, tingling, depression etc,etc, now I feel much better. It wasn't easy but I am glad I desided to fight and don't let this disease win.

Hang in there you can get better.
Posted 11/21/2015 8:17 PM (GMT 0)
Please don't even think in that direction, don't let the devil win, you are stronger than that.

Please give bee venom therapy a try, go to the Facebook page, Pioneers: healing Lyme with Bee Venom Therapy. I've seen some really sick people feel better, some even bed ridden so there is hope.
Posted 11/21/2015 8:22 PM (GMT 0)
I can so relate to what you are feeling. It is so horrible with those first symptoms. You really have to give yourself some time to get well. My worse symptom was my lack of patience. I had to learn to be nice to myself and let myself heal. Stress makes all symptoms so much worse for me.

Gentle hugs of comfort from me.

~Annette
Posted 11/22/2015 1:03 AM (GMT 0)
Storch,

I can totally relate to how you are feeling. When I got sick in June 2014 and I had no idea what was goign on with me I started to google my symptoms and of course ALS and MS were the first two that popped up. I had constant muscle twitching and such weakness in my legs that I could not get up for weeks. With all the weird things going on it didn't take long for depression to kick in and I truly believed, there is no hope for me.

I went to see several doctors and was misdiagnosed for months. I had muscle tests, MRI Scans, CT Scans, Genetic testing, I was hospitalized and no matter how hard I tried to get better I got worse. Unfortunately I was treated with Steroids... I was told I had MS, it is so common in my age, I was told I have Chronic Fatigue, another doctor told me I have Fibro, the next said I have chronic migraines. My family doctor told me it is all in my head. This time of my life felt like hell and sometimes I just though, it is okay if I die now, I have no strength for this anymore.

One day my Mom said she read an article and all these symptoms I have could be lyme disease. My texan docotor told me there is noway I could possibly have lyme disease and only provided me an ELISA test which came back negative. I flew home to Germany to see my doctor there and he diagnosed me with chronic lyme disease due to clinical symptoms alone. He put me on a high dose of Doxy for 6 weeks and after two weeks of awful weird pains I felt a little bit better. I flew home and started living again, walked my dog, went running etc... Only to get so sick again a 3 months later. I couldn't swallow, my heart was racing, my legs were constantly twitiching I was just so weak again. I got a Western Blot test here at the local hospital that was negative actually all bands were absent according to their results.

However I got tested with Igenex and tested positive on my IGG for lyme and negative on my IGM. My provide rat the clinic brushed it off and said that this only means I had it and there is no way I could still have it. So wrong
I went to my amazing LLMD and she explained to me that a lot of chronic lyme patients don't test positive at all or only positive on the IGG, like I did. She started herbal protocol and aggressive abx and malaria meds. She tested me for Bartonela and Babesia and I turned out to have that too, and on top of it Candida.

The treatment she started me on made me so sick, I had days I thought I would die and I was on my way to the ER several times. Days I could not make it out of bed, and days I was so miserable I couldn't even speak. It sounds weird, but somehow I was happy my body showed a reaction to this treatment.

I just started cycle 2 on treatment and changed my meds and here I am in my bed sick like a dog. It takes time to heal lyme and if you have chronic lyme disease low dose doxy won't cut it. Maybe that is why your body did not even react. You are not alone in this. Try to find an LLMD that can help you.
My LLMD said we are looking at at least 18 months of long term abx. So don't get upset if you don't feel better after a few months of treatment. Hang in there.!!!

This group has helped me tremendously and sometimes I just posted and whined of how bad I felt. But it gave me hope when I read the stories of others.


Hang in there, you got this
Simone
Posted 11/22/2015 3:26 AM (GMT 0)
Thanks everyone who replied. The last three years of my life have been literal Hell, which is why I guess I was hoping for some kind of quicker recovery. I'm dealing with a few deaths in the family, losing my brother to drugs and mother to alchohol, chronic tinnitus, a plethora of lyme symptoms and panic attacks / anxiety as well as the inability to speak is terrifying, my parents getting divorced after 30 years of marriage and me having to make sure my little sister gets taken care of. None of which were here before. I no longer have a life and have just become extremely lonely, and too tired to fight most days. No one is helping me, and I can barely afford what I have.

I originally went to a LLMD, but they are all naturopathic where I live. He prescribed a very light dose of doxy, with another ABX as well. I also tried ozone therapy and the Buhner herbs at the same time. I thought this would show any kind of herx or improvement but I guess I was wrong.

I wish I was able to find a LLMD that could help me through it. I know exactly what I need but I'm too tired to guide myself, if that makes any sense at all. Suicide has never been something I wanted, I do NOT want to die. However, I am in so much misery and pain that for the first time in my life it's looking realistic and isn't scaring me.

Obviously, that is a last resort. I guess as all of you have said, I haven't done this right. Part of me doesn't even believe I have lyme, but with an igenex test I guess I'd have to right? Thank you all again. I'm sure a lot of you understand how hard this is.

Post Edited (st0rch) : 11/21/2015 8:29:56 PM (GMT-7)

Posted 11/22/2015 3:43 AM (GMT 0)
You need to focus on you! and your health. I love the movie "What about Bob?" and he has to take baby steps. That is a good movie to watch, by the way. And a lesson to all with lyme. Baby steps.....

And you have not been the only one with a horrible bunch of stress, you have a baby sister that went through this too. She needs you. Do not let her down. I bet if you told her you need her help she would love to have something to do for you.

How did you do the Buhner protocol and are you still doing it? I ask because it has made a huge difference in my life and I had a bad reaction to 2 of the herbs. Yet I will not quit because I have seen such good results. Did you do as suggested and start with one herb slow and easy and get used to it before you started another? Honestly that was the best advice I have ever gotten. When I got worse I knew exactly what herb caused the setback.

My opinion (yep I know what they are like) is to start buhner's again. Japanese Knotweed 1 drop 3 x's a day and gently and slowly move up. Then you can start the next herb.

Oh and DETOX! Me, I detox naturally and always have so I have never herxed. I have always dry brushed. I love my loofa in the shower too. I have always had lemon water for my liver. I love wine so I have detoxed for that. LOL. Just remember detox is a medicine for lyme.
Posted 11/22/2015 9:20 AM (GMT 0)
I was quite relieved when i got the diagnosis myself. Lyme disease in chronic form may not be curable, but it is certainly manageable, you can get to a point where it doesn't bother you at all. You will NOT die from it, especially now that you have found the cause of your problems. Most people that have serious problems are the ones that have the disease for decades, and received no treatment (or worse, they were treated with the wrong stuff - like steroids).

There are people on other forums here with diseases in very late stages that are truly morbid, with pretty much no hope for a life and very limited life expectancy (check the cancer or ALS forums) and they still try to keep positive...

In your case things are simple, the treatment you have started is just the start of the treatment, 100mg will probably get you a MIC (that is the time that your blood has enough antibiotic to kill spirochetes) for one hour or less, then it will drop to low values. So this treatment will certainly not cure you, you need higher dosage, but probably your doctor wants to start slow, clean a bit of the spirochetes running freely in your blood, then ramp up the dosage.

I always cheered when i started feeling worse during treatment because i knew i feel worse because the darn things are dying. When they die they release parts of themselves that create a huge inflammation. When i was on Minocycline 3x100 a day (that's the crazy brother of Doxy which gets deep in your fatty tissue) i got partial cranial nerve palsy for a week or so. it's because when they die they create a toxic environment that temporarily affects the nerves. It will pass, you most certainly not be left with permanent nerve damage.

So hang in there ! And follow what the LLMD tells you.
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