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Really need help.. horrible pain and bed-bound

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Posted 7/22/2019 3:44 AM (GMT 0)
Hi everyone, this is my first post to this forum, I have lurked for a little bit but seeking some advice regarding my health.

I get these horrible flare-ups/'attacks' that come out of nowhere and leave me in incredible pain and bed-bound until they subside (usually takes 2-4 weeks for them to pass).

If I were to describe it I'd liken it to barbed wire being coiled and tightened around my spine. It's an extremely painful burning and dull ache throughout my whole back. When these attacks happen I also get a lot of muscle twitching, brain fog, joint pain, internal shaking, extreme fatigue (I can easily sleep 16 hours per day) and tremors (to name a few of my most prominent symptoms).

I just really need advice on what infection can be causing these flares and symptoms. I have recently been thinking it could be a bartonella infection within my central nervous system but I'm not sure.

I've tested positive for lyme borrelia (weak positive), chlamydia pneumoniae, mycoplasma pneumoniae, EBV, HSV-1..

I get incredibly sick and depressed during these periods and I am unable to work or make a living at this stage which is very hard for me to cope with. I really have to get well soon, otherwise I feel like my life is slipping away from me and I have no hope.

I would really appreciate any advice and help
Posted 7/22/2019 4:26 AM (GMT 0)

destiny said...
Hi everyone, this is my first post to this forum, I have lurked for a little bit but seeking some advice regarding my health.

I get these horrible flare-ups/'attacks' that come out of nowhere and leave me in incredible pain and bed-bound until they subside (usually takes 2-4 weeks for them to pass).

If I were to describe it I'd liken it to barbed wire being coiled and tightened around my spine. It's an extremely painful burning and dull ache throughout my whole back. When these attacks happen I also get a lot of muscle twitching, brain fog, joint pain, internal shaking, extreme fatigue (I can easily sleep 16 hours per day) and tremors (to name a few of my most prominent symptoms).

I just really need advice on what infection can be causing these flares and symptoms. I have recently been thinking it could be a bartonella infection within my central nervous system but I'm not sure.

I've tested positive for lyme borrelia (weak positive), chlamydia pneumoniae, mycoplasma pneumoniae, EBV, HSV-1..

I get incredibly sick and depressed during these periods and I am unable to work or make a living at this stage which is very hard for me to cope with. I really have to get well soon, otherwise I feel like my life is slipping away from me and I have no hope.

I would really appreciate any advice and help

Hi destiny - I’m glad you’re here and I’m so sorry you have those extreme debilitating symptoms that linger for that length of time.

I also have the tightness around the rib cage along with nerve pain in thoracic area of my back.
Mine are usually flaring moderately during the day - usually late afternoon and early evening... most days.
But when I herx they ramp up and I feel it all day for the duration of the herx.

Laying down helps mine...

Yes I agree it’s the CNS that is affected.


How often do you have these attacks?

I also have internal shivers/vibrations and used to have twitching and tremors and joint pain but they have resolved with treatment.

I do believe my prominent infection is Bartonella and have had my worst herxes on Bartonella treatment

Do you have a good LLMD treating you?

Have you tried anything for the pain?

Also - do you detox ?
Warm Epsom salt baths really help me - but the relief is short lived.
Posted 7/22/2019 4:58 AM (GMT 0)
Hi Girlie, thanks for the reply, I appreciate it.

I am self-treating with Buhner herbs as I cannot access a LLMD where I live. I haven't been able to find one in my country as lyme is (apparently) uncommon here.

I haven't yet treated bartonella as I tested negative for that
Posted 7/22/2019 6:43 AM (GMT 0)

destiny said...
Hi Girlie, thanks for the reply, I appreciate it.

I am self-treating with Buhner herbs as I cannot access a LLMD where I live. I haven't been able to find one in my country as lyme is (apparently) uncommon here.

I haven't yet treated bartonella as I tested negative for that

Testing negative for Bartonella (or Babesia... etc) does not rule them out - so I think it wouid be wise for you to add in some bart herbs.

Actually you are likely taking JK for lyme - which is also one of Buhners Bart herbs.

Down the road you could add in Sida acuta Or Houttuynia.

I also don’t have any llmd’s in my country but we do have llnds (Canada)

Oh - there is one LLMD but he has a year long waitlist and isn’t adding anymore names to it.
Posted 7/22/2019 11:45 AM (GMT 0)
Make sure you’re not being exposed to mold or water damaged buildings.

Chronic Inflammatory Response Syndrome (CIRS) can cause some of the same symptoms. Those with Lyme are prone to hyper immune responses to toxins, inflammagens, and pathogens found in water damaged buildings.

https://www.survivingmold.com

https://www.biotoxinjourney.com

https://www.iseai.org
Posted 7/22/2019 12:31 PM (GMT 0)
EBV and HSV-1 can cause intense nerve pain. Add Bart, Babs, Lyme and other Cos and the raw nerves can get really bizarre and painful. I have had much of the symptoms you describe, chest wall pain, back pain, only relief is laying down, which yes puts work responsibilities as not doable. I don't know what else to tell you except I relate. Lyme n cos attack nerve myelin.

Just a few things, but I'm not a doctor: Lysine might break up your EBV/HSV then you can detox, sweat, epsom bath, and if you can spend it, NTFactor is supposed to rebuild nerve myelin. When I was taking NTFactor, I had some of my energy back when I could afford it.

I myself am looking seriously into medical cannabis for pain, energy. People use if for EBV, HSV nerve pain too. If your state, country, province, etc allows it, it may help...good luck.
Posted 7/22/2019 12:56 PM (GMT 0)

Girlie said...

destiny said...
Hi Girlie, thanks for the reply, I appreciate it.

I am self-treating with Buhner herbs as I cannot access a LLMD where I live. I haven't been able to find one in my country as lyme is (apparently) uncommon here.

I haven't yet treated bartonella as I tested negative for that

Testing negative for Bartonella (or Babesia... etc) does not rule them out - so I think it wouid be wise for you to add in some bart herbs.

Actually you are likely taking JK for lyme - which is also one of Buhners Bart herbs.

Down the road you could add in Sida acuta Or Houttuynia.

I also don’t have any llmd’s in my country but we do have llnds (Canada)

Oh - there is one LLMD but he has a year long waitlist and isn’t adding anymore names to it.

Thanks Girlie.

I just purchased Houttuynia, Cordyceps and Chinese Skullcap to try and address mycoplasma and possible bart. I'm already taking JK and cats claw.

When you herx from bart do you notice it immediately or can you experience a delayed reaction, say 1 week after taking abx/herbs?
Posted 7/22/2019 1:00 PM (GMT 0)

borrelioburgdorferii said...
EBV and HSV-1 can cause intense nerve pain. Add Bart, Babs, Lyme and other Cos and the raw nerves can get really bizarre and painful. I have had much of the symptoms you describe, chest wall pain, back pain, only relief is laying down, which yes puts work responsibilities as not doable. I don't know what else to tell you except I relate. Lyme n cos attack nerve myelin.

Just a few things, but I'm not a doctor: Lysine might break up your EBV/HSV then you can detox, sweat, epsom bath, and if you can spend it, NTFactor is supposed to rebuild nerve myelin. When I was taking NTFactor, I had some of my energy back when I could afford it.

I myself am looking seriously into medical cannabis for pain, energy. People use if for EBV, HSV nerve pain too. If your state, country, province, etc allows it, it may help...good luck.

This is really interesting. I never thought HSV and EBV could be the culprit with all of this pain. Is it possible to treat these viruses? From what I've read it seems HSV and EBV cannot be cured?
Posted 7/22/2019 1:31 PM (GMT 0)
I am not a doctor. I know L-Lysine does something for EBV/HSV, not sure what it does exactly. It is an amino acid that isn't created in the body, that you get from diet or supplement. I think it rebuilds collagen among other beneficial effects.

Post Edited (borrelioburgdorferii) : 7/22/2019 8:05:49 AM (GMT-6)

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