After 3 months of treatment

[kerry23]

Okay, having taken minocin for lyme, levaquin for Bartonella, I do not feel much different. It’s wierd how things change in the body. The joint stiffness and pain are excruciating. The spasms in hands and feet are painful yet in tiny areas. The loss of memory makes me feel like 80 years old. The depression with lack of motivation daily is getting boring. My son is sick too and it takes us hours on the couch, some food in our stomach to get functioning. God forbid, we have an appointment. The pain medication keeps us moving. What do we expect next? Now, the blood work shows anemia, I am always tired, could nap after two hours upon awakening. I am up every hour at night having to urinate (so is my son), I don’t understand that. I try not to drink to much but wake up so dry. I have been diagnosed with sjogrens but my son says he does too and he doesn’t have any autoimmune whereas I have them all. It almost feels like I am dying a slow death. Thoughts of suicide run through my head knowing I would never act upon it but I don’t want to continue living in this hell. I can’t believe a bug did this. I can’t believe the United States with all our technology can’t see what is really happening to all of us. I want to know how my mother in law gets lyme, sees a ring, gets treated and is fine. I get it, never knew I had it, year after year, doctor after doctor, autoimmune diagnoses, no lyme, you are negative, you only have one band reactive. #41…..How do you have just a little lyme? H1N1 was a scare and within months, we had a vaccine and all is under control now. Lyme Disease? Lucky we find an LLMD, then they don’t except insurance. Start treatment, herx reactions, more pain, more depression, anxiety, stiffness, trouble swallowing, eating, esophagual problems. Months of treatment, just waiting for the light at the end of the tunnel, something positive.
No one understands, even the family has a hard time. You try to educated them but you are too weak, too tired.
My knees go numb at night, no pins and needles, just plain numb. Sometimes, I can’t move, I am stuck, I cry out just to move. The thirst, the need to use the bathroom but it’s going to take 5 minutes to get there. Frustration and a lot of tears lately.
Having two of us with this seems unfair. I am the mother, I am suppose to be taking care of him but unable to. I try when I can,
I don’t know which symptoms are Lyme, Bartonella, scleroderma, sjogrens, CFS, Fibromyalgia and whatever else I have, I forgot. What difference does it make, it all stems from that bug.
I feel for the children and the ones who can’t get the help. I am whining here, I know that, I am just frustrated. I just want my 22 year old son, to have a normal life. Not sit here day after day, in pain with anxiety and depression. No job, no friends, no activities. That is what kills me.
Thanks for listening to me vent:

[hbell]

My heart goes out to you and your son. What a battle you are enduring. These diseases suck big time, and I too, beat my head against the wall wondering when there will be a breakthrough in cures or part thereof for AI illnesses. A lot of the medication out there scares the sh@* out of many people, but sometimes you just have to bite the bullet to get some quality into your life. I wish you and your son better health soon.

[Eileen]

Your frustration rings loud and clear and am sorry you and your son are going through so much. It is an ordeal which taxes our bodies, minds and spirits. There is no quick fix. It is a long road. So, please be patient and reach out to as many people as you can to get the help you need. These illnesses can render us very vulnerable and isolated. There is light at the end of the tunnel. You will improve and so will your son. Keep thinking the best thoughts you can no matter how trying it may be.

I’ve been down the road your travelling w/a child that is sick, too. I understand.

Eileen

[hopefulmama]

I am very moved by your post and I am so saddened to hear of your pain and that of your son. I am a mother to three children and no matter what is ever happening to me, watching any of them suffer is the worst. I really feel for you.

I wanted to tell you that I take LDN and it has made a tremendous difference in my daily pain level. I am really enjoying movement again and have to constantly remind myself that I have spinal injuries and should not be lifting my daughter, because I feel so much more normal that sometimes I forget to be careful.

If you are seeing a LLMD, you should be able to get a prescription for LDN fairly easily or at least bring it up with your doc. For me it has been the single most helpful part of my protocol.

Best wishes and I will be praying for your family,
A

[mschmidt]

I am so very sorry for your pain, and that of your son–I can’t imagine what having to go through what you are, AND take care of someone who is sick, must be like. Luckily, I only have to care for myself–mostly because I’ve isolated myself from everyone who tried to help me. (other than people on this board, who understand my journey) Your post resonated with me in so many ways–brought back memories that I’d like to erase from my mind. I’ve been where you are right now–I was there for a long time, and I had my doubts about whether I’d ever crawl out of this hell, and feel anywhere near normal again. I remember waking up every morning, feeling like Bill Murray in the movie “GroundHog Day.” It was like I was stuck in a bad dream, waking up to the same day, over and over again. I still “fantasize” about what it was like to be carefree about everything, after all, I had 37 pretty good years of health. But, that is the past, and all I can do is live each moment, as best I can. Some days I succeed, and other days I fail miserably.

Now, here’s the good news…AP has turned my life around. I have mostly great days now, from a health, happiness, and pain-free standpoint. It didn’t happen overnight but, it happened. Am I 100%? No. I’m about 95%, and if that’s the closest I get, I’m OK with that because I remember a few years ago, I was begging and pleading for a mere 50% return to normal. No matter how I felt, how bad it was, how many times the thought of jumping off the balcony on a daily basis crossed my mind—I never gave up HOPE. It’s all I had, all I have now, and all that I have to give to you. There IS a light at the end of the tunnel, and you WILL see it. I stopped counting what the doctors diagnosed me with because it doesn’t matter anymore. All that matters is that I’m being treated for a multitude of infections–at the cost of 2 homes, my savings, a marriage, and a lot of my personal sanity. But, I get to wake up each day, get out of bed without pain, have a clear mind, and can do 99% of everything I could do before I got sick. Hang in there–I know it’s easy for me to say that to you now because I feel so good. But, please know that I understand where you are, and I, like all the amazing people on this board, will always be here for you to vent whenever you need to. You’re also free to PM me anytime, and we can talk on the phone if you need to.

Take care of yourself–you and your son are in my thoughts and prayers.

Maria

[mlouise]

I feel so bad for you. I have now been on Mino for 7 months and I just had the IV with Clindamycin. I feel a whole lot better then at three months where you are now. I was in a brain fog. I was in pain, up all night, unable to stand for more than 5 minutes at a time, had such stomach and intestinal difficulties. BUT IT GOT BETTER. Even before I had a clinda IV I could feel the strength coming back in my legs and the fog was lifting, but the IV really made things take off. I am able to do things (like typing with all 10 fingers) which I didn’t think I would ever do again. I realized just last night that I haven’t taken a Nexium tablet (for heartburn) since the middle of October.
I will think of you and pray for your contiued healing. You are probably getting better or will be soon without your even knowing it. DON’T GIVE UP!. Healing is just around the corner.
Make sure you are doing everything you can to keep on track: probiotics, rest, no stress, infrared sauna, and try to practice good nutrition. Keep thinking that everything you are doing is for when you get better.

[Eileen]

Hi Kerry,

I sent a PM to you. When I go back into sent messages, it says no messages sent. Please let me know if you get it, ok?
Thanks,
Eileen

[Jan Lucinda1]

Eileen-

With this system sent messages only show up after they are read. I had the same question.

Jan

[Kim]

Hi Kerry,

Reading your post brings us all back to some very dark days we too have experienced. I’m sorry for what you and your son are going through, but if it helps at all, I didn’t start turning the corner until four months into treatment. You can read what all I did to get better in the link in my signature line.

Sure hope you both can get some relief soon.

Take care……kim

[kerry23]

I just want to thank all of you for your words of kindness and inspiration. I needed that. The holidays are tough as you all are aware. I will fight this battle to the end but I need the help with all of you to do that. I started on this site, then left, just too depressed to even write about it on the computer. Now, I realize how much I need this. I have received everyone’s PM and thank you all. It is just so good to hear the positive stories. I just don’t understand why I feel almost worse on the antibiotics. It almost feels like the disease is going backwards. Does anyone understand that. I can’t explain. I will be in touch with all of you, I need you all. I am really at the end of my rope….the depression is so strong that I can’t fight it. I am trying but it is so hard.
Thank you all again for your support. I will touch base,
Kerry

[Maz]

@kerry23 wrote:

I want to know how my mother in law gets lyme, sees a ring, gets treated and is fine. I get it, never knew I had it, year after year, doctor after doctor, autoimmune diagnoses, no lyme, you are negative, you only have one band reactive. #41…..How do you have just a little lyme?

I don’t know which symptoms are Lyme, Bartonella, scleroderma, sjogrens, CFS, Fibromyalgia and whatever else I have, I forgot. What difference does it make, it all stems from that bug.

Kerry, I’m so sorry to hear about what you’re facing….like the others, I know how you feel, as I went through exactly the same thing in the first year of my Lyme treatments. The early months were particularly awful and I fell into deep depression, too, just wanting to get out of my body that was just wracked with all-over pain, so bad I could not lift the sheets over me, switch off my bedside lamp or even squeeze toothpaste. I needed my hubby and my girls to help me bathe and dress. There seemed like no end in sight, but it did gradually get better, inch by tiny inch. I had many more days where I felt like I was going backwards that first year, too, but regular labs helped to keep me going, as they seemed to be improving, even before I really felt like I was improving.

I remember asking my LLMD what I had – Lyme or RA? He replied that it was “both,” but that once the infections cleared up the RA woud remit. He also told me it could take about 5 years to reverse all my symptoms when I asked him for a guesstimate on how long it would take….but I was pretty severe. It’s been just over 4 years now and I am having days where I feel as though I am RA-free. However, I know I still have work to do, because I am doing long pulses now to scare out the remaining bugs. They’re still there, hiding, but with each 3 week pulse round, the herxing is lessening.

I’m with you, Kerry…how could such a small bug create such devastation??? 😯 It still blows me away just how many people here are showing up with Lyme and coinfections. The folks with scleroderma and Lyme seem to be increasing exponentially.

Thing is, most people do get better again with the standard short courses of antibiotics prescribed by the IDSA…maybe as many as 95%. It’s the few 5% with chronic Lyme who don’t get better as easily. Why? Well, from what I’ve researched, there are over 100 strains of borreliosis in the US and 300 worldwide. Some strains are just more virulent, with greater disease-causing potential, than others. Some folk also get coinfected with multiple other infections, which also come with many different strains. There are now known to be 26 different named bartonella strains…same for babesiosis. So, it might be that some people get sicker depending on what strains they have of all these bugs than others. It might also be made much worse in those with certain genetic haplotypes. Strain and gene variations may have everything to do with how a person manifests disease with borreliosis, not to mention variations in other things, like natural ability to detox.

Kerry, just wondering, but has your LLMD discussed treatment for babesiosis with you? The anxiety you’re experiencing could just be bartonella, but anxiety is also a common manifestation of babesiosis, which would need separate anti-protozoal treatment. Just a thought…

Above all, hang in there, Kerry….Lyme protocols take a lot of tweaking by an expert who really knows what they’re doing. And, it’s usually a systematic process of weeding through clearing whatever coinfections might be impeding progress. This all takes a lot of time and patience. You have friends here who know what you’re facing, so keep visiting often, if you can.

[Nell2]

Hi Kerry,

Just saying oh yes, I know exactly what you’re talking about. All the dark thoughts. I’m only at the beginning of this road, just 6 months in, and it often feels to me like the end is not just out of sight, but not actually there. I try not to think about that too much. And come here to read positive stories which helps so much.

Thank God for Netflix!

Nell

[Eileen]

Hi Kerry,

I know it’s only been a few days, but know that I’m thinking of you and your son. I’m really rooting for you!!! Stay with it, you will get better. Keep talking to all of us no matter how awful you may feel right now. Keep moving and never stop!

Eileen

[Lynne G.SD]

Kerry my sweet.I think most of us know exactly how you feel.Somehow we manage to get through it but even now I don’t know how.The mental strain often seems worse than the physical.It took me over 5 years to get to remission from the SD.I did herx somewhat but it was tolerable.Then last year we found out that that I have Lyme,this after 7 years of remission.The only way my doctor figured it out was by me stopping antibiotics as we thought the remission might be permanent.It too only a few weeks for the SD to come roaring back.That is when the doctor found out that there was a lot more to the story than plain old SD.
I was feeling just fine on mino alone and now had to take a whole mess of things.I have never had such herxing and it is still going on a year and a bit later but not as bad as the first few months.I expect that is why you are feeling so bad.
Out of my 12 years on AP I figure almost 4 of them have been with varying degrees of herxing.Thankfully I am doing soooooo much better now.Hang in,your time will come also.Just remember that the alternative is even worse.
Lynne

[Eileen]

Kerry,

Thinking of you!!! Has anyone heard from her?

Eileen

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