I'm Beginning to Feel Hopeless; I Feel Trapped and at a Standstill

I have been sick with Lyme, Mycoplasma, babesia, and bartonella for three plus years and most likely since childhood. I'm now 24 and basically bedridden. I've tried antibiotics for two years, I'm still on them but I have become exhausted and even with daily detox I'm just so tired to stay on a protocol. Whether it be herbal/antibiotics or a mix of both.

I try to sleep but nothing works, I suffer from horrible joint pain so it keeps me up at night; and being a former runner who ran 10 miles every other day, somedays I'm unable to walk up the stairs. I feel like a burden to others around me, especially my parents. I had to drop out of school becasue I went from being an A student to an F student who had epileptic and muscle jerking problems, which tanked my confidence and extrovert personality. I can't drive either, and when I was I 'd nearly killed myself because my depth perception is whack. Now I have sporadic anxiety problems where my mindset can change quickly; it's as if I always have to hold back some taboo behavior, as if I'm about to lose control. Of course I tell myself it is the infections in my brain but the mental burden it puts on me is tremendous. I have had good days, but they seem to be fading as of late.

Now I'm all messed up and have terrible sporadic neuropathy, migranes, pain all over my body, fatigue that I'm all sure many of you have experienced. It sucks and I'm tired of feeling like death. I'll blame the infections but I also think antibiotics have instigated these symptoms.

I've basically been a hermit because social encounteurs are a mental burden. Not only that but concentrating on a converstion for more than 30 seconds is debilitating.

Most of my friends are gone, off to college, working, etc. Don't text or call me anymore but It could just be me isolating myself. Hard to not when you feel so terrible. I have not got one text, or phone call that has asked how I was feeling in the past yer. Which is fine because I still have the support of my parents and Jesus. I just don't know what to do.

I can't rot in my parents home. I'm thinking of trying one more large buhner protocol to see if it helps, but I nor my family has the money to afford half of what this stuff is worth.

Lyme and coinfections have ruined my life; my parents, although support me are starting to question my sickness, my friends are gone, and I sit here sick trying to understand what happened. Why me and why can't I get better? The IDSA was of no use and my Llmd's despite great appointments ansd talks didn't really do much.

It just feels like no matter what I do my body continues to deteriorate. I'm not the fun, risk taker that I ise to be. I'm now a 24 year old hermit who lives under his bed sheets asking mom to make dinner.

who is prescribing you antibiotics and why ?

do you have a LLMD ?

it's NOT ok to take antibiotics for years while continuing to degrade. Either the antibiotics do not target an infection that i problematic for you (like babesia which will NOT respond to common antibiotics), or your LLMD is not as skilled as you like it to believe.

I suggest you change the lyme doctor. A person does not have to wait for years while on antibiotics to see progress. This is unusual. Good lyme doctors wait for several months then re-evaluate their treatment and will ask for more tests or change them.

Treatment should ALWAYS involve supportive supplements, it is one to take antibiotics for a few months and a completely different picture to take them for years without support. Kidneys and liver function MUST be tested regularly.

Diet is also very important. What are you eating ? When taking antibiotics for so long it is a good idea to follow an antifungal diet.

After you get much better, the lyme doctor should switch you to herbs. Again, what u are doing now is NOT WORKING. Change it !

Sorry to hear this birthdaysuit. I'm not seeing any improvement with antibiotics either and if anything have new issues popping up. I was much better when I was self-treating with herbs. I'm talking to my LLMD the end of September and I'm going to tell him I want off antibiotics (he had me go off herbs). I'm going strictly herbal and maybe explore other options.

I would guess that something else could be effecting your health in addition to Lyme & Co's. Is it possible you have mold exposure? You are so young, I hope you can find some improvement soon.

Like others have expressed taking abx for over 3 years and getting worse overall is not okay.

Abx and it's ability to kill bacteria is only a piece of the recovery puzzle. The human body very rarely completely eradicates all pathogenic microbes. It just wasn't design too from an evolutionary perspective, mainly because it doesn't necessarily have to. It was designed to be efficient as possible. It was designed to suppress not complete eradication.

Can you share in some detail your full range of treatment?

As others expressed, I too am curious on what supplements you are taking and what herbs you are taking. And are you taking them everyday?

If the correct holistic approach is taken then over 3 years one should not get significantly worse.

I'm in a similar situation except my parents are still helping pay for my treatments. I had to go off of the antibiotics because one of the main issues is that they were killing my immune system and I kept getting sicker, and they also messed up my stomach with candida etc.

things that have helped me are going on the Byron White A-bart and A-L complex for lyme and bartonella, which are both strong formulas. I have also done bee venom therapy which seriously helped to get rid of any EBV that was still lingering and boosted my immune system. I also did a parasite cleanse which helped my stomach and helped me regain more energy.

I really feel for you- I cry daily and I'm not even as bad as I used to be. It's messed up that the government has neglected all of us- have you tried to get in on any clinical trials?

I'm waiting for Yolanda Foster's book to come out as she is doing much better and I know for a fact she stopped antibiotics.

Birthdaysuit,

I'm glad to hear you have the support of your parents and Jesus. Sometimes I feel that's all I have, too. I understand feeling isolated and like you're a burden. I'm in a similar situation, but my symptoms are not nearly as severe as yours. I am so sorry for your suffering, and I prayed for you after reading your post.

First, I am no doctor and am still learning about Lyme and co-infections, but I absolutely agree that the antibiotics are probably doing more harm than good.

I tried antibiotics for only 7 days, and it made me far worse for months afterwards. Now, I am doing Stephen Buhner's protocol. I'm doing things in a way that makes sense to me, and I'm learning to listen to my body. I'm almost 3 months into the herbs and am working on the bartonella protocol. I am very sensitive and have to start with TINY doses and work up very slowly. I got impatient in the beginning and had to stop and start over twice and changed direction. Now, I'm trying to practice patience and only add 1 new herb each week and slowly increase doses as I go along. That process is working much better. In the last week, I had 3 good days in a row. That was really my first breakthrough.

Your post brought many thoughts to my mind. I'll try to list them below.

1. Cost - Buhner's protocol can be very affordable if you by the herbs in bulk in powder form. Also, if you are sensitive and can only take low doses, it will take a lot longer to use up a bottle of tincture or capsules if you use those.

2. Take the First Step - The most important thing is to START SOMEWHERE. Once I made the decision to use Buhner's protocols, I got completely overwhelmed and lost in indecisiveness about which form of herb to buy (powder, capsules, tinctures), which protocol to start with, where to buy which herbs, etc. It was very overwhelming, and I wasted a lot of time trying to make decisions.

It will take some time to find your way, but I assure you that once you START, you WILL find your way!!

MY SUGGESTIONS:

Buhner says the most important herb is japanese knotweed for Lyme. It is also effective on a number of coinfections and is a good herb to take for life, according to Buhner. You can get a 1lb bag of powdered knotweed and start with that one herb while you come up with a plan for how to proceed.

If you stop antibiotics, it would be a good idea to coordinate that effort with your doctor in case you need special instructions for how to stop them properly.

3. Neuro Lyme and bartonella can both cause severe symptoms, like what you described. I'm working on Buhner's bartonella protocol now, and it has been helping my symptoms. I started with knotweed, then added EGCG with Quercetin, then added Hawthorn, then added Rhodiola and Ashwaganda last week. After adding Rhodiola and Ashwaganda, I started feeling better and had less joint stiffness and inflammation. I don't know if it was specifically due to the Rhodiola or Ashwaganda or if it was due to the cumulative effect of the combination of herbs over several weeks' time.

Buhner also recommends many herbs based on symptoms. I would look into those, too, especially for neuro support. You need to find something that will quickly alleviate your worst symptoms. This will help you feel better, function better, and give you the hope and confidence you need to proceed. Buhner's books are very reasonably priced on Amazon, and you can get loads of free information on www.buhnerhealinglyme.com.

4. I agree with the others. You very likely have some other problems involved, like mold. There are many things that can cause difficulty for those with Lyme: current or past mold exposure, heavy metals, methylation defects, HLA-DR genetic types susceptible to biotoxins, HPU/KPU, other undiagnosed infections, candida/yeast, parasites, etc. If you have a good doctor who is knowledgeable of these things and is serious about helping you uncover these hidden issues, it may be worth the cost.

5. You said "I'm thinking of trying one more large Buhner protocol to see it helps." Not sure what Buhner or other herbal protocols you've tried so far, but from my understanding, for the herbs to work for these infections you need to take them in large enough doses for long enough periods of time. That's where Buhner's expertise lies. He has learned which herbs work the best in which combinations and doses and lengths of time.

I expect there are many people who have tried one or more of Buhner's protocols and quit because they didn't feel any better after a few weeks, or they felt worse after starting the herbs.

Buhner's beginning doses are WAY TOO HIGH for many people, so start low. His range for knotweed powder is 1 tsp - 1 Tbsp. I had to start at 1/16 tsp and still have worse symptoms every time I increase the dose by a smidgeon. Buhner also makes it very clear that some people can only tolerate a drop or so of tinctures and never get past that. He says they still recovered at that low a dose. Listen to your body and go slow.

Many herbs are very potent and can definitely cause herxheimer reactions.

6. RealFoodRebel's story and Dr Rawl's story both gave me a lot of hope and confidence. Their stories confirmed what I already felt instinctively about antibiotics and introduced me to Stephen Buhner and herbs. You can read their stories here:

http://realfoodrebel.com/success-with-buhners-protocol-for-lyme/

https://rawlsmd.com/health-articles/my-chronic-lyme-disease-journey

7. Whatever you decide to do, the people on this forum will support you. You are not alone. We want you to get well and go on to live a full, prosperous life.

God bless you.

This is so important and sometimes hard to believe.

When you're starting or when you're sensitive, understanding that a very small dose (that might seem like nothing) is preferable than actually nothing, is vital.

WalkingbyFaith said...
Birthdaysuit,
Buhner's beginning doses are WAY TOO HIGH for many people, so start low. His range for knotweed powder is 1 tsp - 1 Tbsp. I had to start at 1/16 tsp and still have worse symptoms every time I increase the dose by a smidgeon. Buhner also makes it very clear that some people can only tolerate a drop or so of tinctures and never get past that. He says they still recovered at that low a dose. Listen to your body and go slow.