Running out of hope

I treated clinically for a year on Dr. J's protocol. I got nowhere. I suffer from severe neurological issues. Damaged to nerves throughout my full body, complete loss of bladder sensation/urge for over a year now, vision is so bad I can't even describe it and the list goes on. I finally took an igenix test this summer and had it come back with an igm band 23 and Bartonella Henslae indeterminate. 4 months after that I took another Igenix test and it came pack Lyme positive with igm bands 23 and 31 and igg positive for band 41 with band 93 being indeterminate. I had a positive 160 titre for anaplasmosis and I was indeterminate again for bartonella Henslae but also Vinsonii this time along with TBRF indeterminate for turicatae. I've been bed ridden for two years. One of those years treating clinically. If these infections really are the root of my illness then I believe bartonella is my worst infection. I have tried months of rifampin and azithromycin with no help. Went back to trying rifabutin and herxed on it but im back to baseline. I'm so hopeless. I've swallowed so many antibiotics, supplements, herbs in desperation for two years. I feel my body is damaged beyond repair and don't really believe in anything anymore. I want to end it all. I'm in a living hell. My last ditch effort is SOT in the near future. Has anyone ever been this bad off and treated heavily for years and overcome this stuff? I feel I'm a very extreme case. I can't do this much longer. I'm barely hanging on.

Hello Eric
Sorry to hear of your struggles

I think it fair to say you are not alone.

It’s just such a challenging disease – even when you think you are on the right track an making progress a new things can pop up - or setbacks emerge without warning that sets you back again making it a very challenging emotional roller-coaster

As a result, many of us long term sufferers have periods where we feel its all too much to cope with or we just cannot go on.

But hang in there. These dark patches often feel interminable, and when in them we can see no light at the end of the tunnel – and yet a few weeks or months - or sometimes even just days later - our perspective can shift and we find renewed hope and energy to go on

There are many case reports in the literature of people being bedbound or even paralysed with Lyme and co’s for years of failed treatments – then recovering with the right targeted approach –

I will try and find a link to a recent set of just such case reports – so recovery is always possible

[Quote=”study”] Ten patients had intractable or severe motor deficits before treatment in the context of Borrelia (two cases) Borrelia–Babesia (four cases), Borrelia–Babesia–Anaplasma (two cases), Borrelia–Babesia–Anaplasma–Bartonella (one case) and Babesia–Anaplasma (one case). For several months, five had been in wheelchairs, and four had been walking with sticks. Seven patients out of 10 (70%) showed complete remission after a mean active treatment duration of 20.1 + 6.6 months, with a mean number of 4 ceftriaxone cycles( with other abx)

https:// https://www.mdpi.com/2079-6382/12/6/1021/

Some of these patients also had lyme bartonella and anaplasma
Bartonella does seem to be associated with difficulty in treating
But even here there are some promising recent developments - with new effective bartonella drugs being identified - for example by Zhang’s lab at Johns Hopkins - such as
• methylene blue
• nitroxoline
• azole antifungals
• oil of oregano

it’s a very tough disease – but you are also very resilient, you must be as you are still here plugging away

so keep up the good fight!!

All the best for the SOT treatment - and be sure to let us know how that goes

I'm just really scared. I don't know it I have some neurological disease like MS or if I'm sick because of these infections. I don't know what to think or believe anymore. I'm just so hopeless and want it all to end.

Please don’t give up hope. When I joined this forum, I couldn’t imagine not being in the pain and misery I was in. I had/have mold illness and MCS in addition to Lyme and coinfections. It took a lot of years and trial and error, but I have been stable for a couple years now. There were times when I just wanted to run off in the woods and die. I thank God for His grace and mercy that I am still here and able to live a more normal life again. Praying for you.🙏

I was with Dr J for over a decade and remained mostly bedridden the whole time, though there were phases of better and worse.

I've had a fair amount of neurological issues, particularly light and sound sensitivity. Taurine seems to help me light sensitivity since I think it recycles gaba.

When I wanted more help than Dr J could give me, I was to Dr G in California (virtually). He has more ideas but I'm still sick. Right now we're checking out iliac vein compression. It looks like I have severe may thurner

Hang in there,Eric.

When I was treating these infections I was a mess for many months.
My mind went to dark places and thought I would never be better.

But I kept on going (thankfully I had a supportive group of people to lean on ) and I am in remission and life is good again.
Hang on - keep on going.
Come to healingwell and vent anytime!

So sorry to hear Eric. Completely understand. I have been fighting this stuff for over 20 yrs. I was able to get some quality of life restored w/ various antibiotic treatments/ supplements et al. None completely restored but 50-60% restored function was a huge win even if I still battle symps daily. However the past two years have seen very few periods of recovery, increasingly bedridden, continue to decline, discouraged). But pray as long as I have breath to never give up but admittedly many more days/weeks of frustration & feeling helpless. Not sure sharing my current experience helps but I hope you keep fighting & on the days/weeks/months you don't feel like fighting give yourself grace/patience, try not to be so hard on yourself, you are valuable (I believe our sharing on this forum helps so many people who read it but we may never know that the experiences/ struggle shared was a blessing to another person trying to find answers like we are, offering hope for recovery).

I also am considering SOT (recommended recently by LLMD) and investigating Methylene Blue for the Bartonella. Even though my Igenix tests keep coming back positive for various coinfections (I almost hate ordering new Igenex labs cause results are a roller coaster but Bart & TBRF are fairly consistent. Everything else pops in & out, Babs showed up this last time havent seen Babs in over 10yrs. Even started questioning if Igenex still reliable, LLMD still has faith in their process & results).

Saying hang in there seems empty knowing the daily challenges, I have to self encourage which is very hard some hours, the mental/emotional battle sometimes worse than the battle w/ Lyme & it's beastie buddies.

As someone who has delt with Lyme myself, the best advice I can give you is to give your life, disease and all, over to Jesus. Ask him to take over. Then believe and follow the Holy Spirit. I'm very serious.

Eric H. said...
I treated clinically for a year on Dr. J's protocol. I got nowhere. I suffer from severe neurological issues. Damaged to nerves throughout my full body, complete loss of bladder sensation/urge for over a year now, vision is so bad I can't even describe it and the list goes on. I finally took an igenix test this summer and had it come back with an igm band 23 and Bartonella Henslae indeterminate. 4 months after that I took another Igenix test and it came pack Lyme positive with igm bands 23 and 31 and igg positive for band 41 with band 93 being indeterminate. I had a positive 160 titre for anaplasmosis and I was indeterminate again for bartonella Henslae but also Vinsonii this time along with TBRF indeterminate for turicatae. I've been bed ridden for two years. One of those years treating clinically. If these infections really are the root of my illness then I believe bartonella is my worst infection. I have tried months of rifampin and azithromycin with no help. Went back to trying rifabutin and herxed on it but im back to baseline. I'm so hopeless. I've swallowed so many antibiotics, supplements, herbs in desperation for two years. I feel my body is damaged beyond repair and don't really believe in anything anymore. I want to end it all. I'm in a living hell. My last ditch effort is SOT in the near future. Has anyone ever been this bad off and treated heavily for years and overcome this stuff? I feel I'm a very extreme case. I can't do this much longer. I'm barely hanging on.

Sorry to hear that.
What did Dr J say about you not getting any improvement?