Active Infection VS Damage from Lyme

As you suspect, this is almost to early to tell.

Most people (the lucky ones) who do get treated and heal fast dont find their way to a lyme forum.

Did you ever get insomnia? its very very common. That alone causes many other symptoms, we need deep sleep.

Astroman - I don’t think I ever really had insomnia, maybe the first few days of the doxy when herxing I woke up quite a bit, but been sleeping really well - 7-9 hours every night.

And as strange as it sounds, I’ve been reading and searching this forum almost from day one even though it is a chronic Lyme forum. You all seem to really know you’re stuff.

Girlie-
That is my fear, active infection despite early and fairly aggressive treatment ...and that it all may come roaring back after the rocephin ends.

Tomorrow is 13 weeks of treatment, with a few days off in the middle.

I know that the co-infection tests may not be completely accurate, but it seem like my remaining symptoms (greatly reduced since starting rocephin) line up more with Lyme than anything else. Or maybe I’m missing something when it comes to understanding co-infections.

I could see how the twitching is nerve damage and how an inflamed heart & pericardium could take months to heal on their own regardless of Lyme...but also I can see it as a signal of current infection.

I have not seen an LLMD, as I am not sure if any of them in my area (or at all) would accept Medicaid and then if Medicaid would even approve treatment. —-also have just been hoping and praying “regular” docs combined with healthy eating, taking care of my body, and supplements would knock it all out.

I have about 10 days of rocephin left, and when I asked my infectious disease doc if the rocephin should take care of it, he chuckled and said “It is all I’ve got”

I can definitely say the rocephin has reallllly made a difference...most days I feel 85-90%. I’m concerned that it all comes roaring back after the treatment ends.

Any additional advice or opinions would be much appreciated.

I think still active - probably coinfections, maybe Lyme. Coinfection testing is even more unreliable than Lyme testing and false negatives abound.

Personally, I would recommend getting to an experienced and respected LLMD quickly to deal with what is remaining.

I know there’s a lot of debate about the specific question you asked. My personal belief is that symptoms are rarely damaged leftovers. With the exception of brain damage verified by MRI or nerve damage (think myelin sheath) that takes time to heal, I am a believer that in the absence of infection and with sufficient nutrients and supportive therapies, most damage can be repaired. The body has an amazing ability to heal.

I honestly believe a lot of what many think is “damage” is actually ongoing symptoms caused by infection. Doctors know a lot, but even the most knowledgeable doctors don’t and can’t know everything. Much about Lyme is based on assumptions as much as scientific proof.

iv and topical magnesium helped stop the twitching even my heart flutters . if cardiac involvement burrascano recommends min 6 months rocephin and a cyst buster ....

GanglionCyster,

I have no medical background whatsoever, so I have no idea about the specific abnormalities on your MRI.

Based on what you stated in your post, I think ongoing infection(s) is most likely the issue. Since you started treatment early and have heart involvement, I would try to find a doctor who will continue to treat you with antibiotics.

Many people use Stephen Buhner’s herbal protocols to treat their infections. He has written books that explain each infection, how it affects the body, and how to treat it herbally. Healing Lyme 2nd edition and there are two books for coinfections. I would recommend at least getting the Lyme book. He includes herbs to treat pretty much any symptom.

Hawthorn is an adaptogen herb most recommended for the heart. It’s very affordable and easy to find. Nature’s Way capsules is what I take. You can probably find it in the grocery store.

Bartonella (your stretch marks) is herbally treated with Japanese knotweed, houttuynia, Sida acuta. Your doctor may not be aware that the stretch marks are a clinical sign of bartonella.

Cytokine remodulators are Chinese skullcap and danshen (red sage).

Immune support - cordyceps mushroom is one.

Lyme treatment is Japanese knotweed, cat’s claw, andrographis (can cause hives).

Astragalus may help boost your immune system since you caught it early. If it makes you worse, then stop. In chronic people, it can boost the part of the immune system that is already stuck in overdrive.

Herbs can be taken with antibiotics, just check for contraindications. Buhner’s book will be very helpful in this regard.

Buhner recommends buying herbs from Woodland Essence, Sagewoman Herbs, Mountain Rose Herbs, Elk Mountain Herbs, and a few others. 1st Chinese carries 1 lb bags of powdered Japanese knotweed and cat’s claw and carries the vat grown Plum Flower Cordyceps powder that he likes. I use Plum Flower or Nuherb powdered knotweed. I prefer Nuherb, as their powder is finer ground. The Plum Flower tends to have pieces that don’t dissolve well in water. Woodland Essence has most of the tinctures.

I’m sure I have told you far more than you were ready to hear. Herbs can be overwhelming but well worth the effort in learning, in my opinion. If I did it with the cognitive issues and moldy brain I have, anybody can. It was hard to figure out and frustrating to learn, but the books were my guide, and the awesome people on this forum provided answers to my questions.

Post Edited (WalkingbyFaith) : 8/25/2019 3:22:55 PM (GMT-6)

Try to get more abx treatment - if you can ASAP - when it’s caught early (yours is) abx are very effective...


I also have Gilbert’s syndrome

Twitching is very common with lyme and Bartonella.

And yes the heart can be affected - as all organs can.

Take lots of Hawthorne and add Coq10 to your daily supplements. Also good for cardiovascular/heart health

I was feeling dang near 100% midweek when I saw the infectious disease doc, but the last two days my heart has been having the typical short pulsing/ throbbing stabbing pains. It was particularly bad last night. Improving today. BP & HR very normal and good.

I went ahead and ordered Buhner’s Book, and Samsara’s Tick Recovery.
Girlie, I started CoQ10 50mg about 6 weeks ago.
Also started Hawthorn today, thank you for the tips!

Due to this weekend’s pain spell, I’ve decided I’m going to call the infectious disease Dr, inform him of increased symptoms and basically beg for more antibiotics. If he refuses, I plan to ask him to note in my file that I requested additional antibiotics and was refused. I’ll then ask for a copy of all of my records and let him know I do not plan to return.

From there I’ll approach my PCP and/or find a new infectious disease doctor since an LLMD is not an option for me.

I have a new cardiologist who is not only aware that Lyme can affect the heart, but has several patients who have similar experiences. I see him Sept 12.

Hopefully, one way or another, I’ll get additional antibiotics.

If all of this fails, or falls through. Maybe disulfiram is an option.

Thank you Missouri for the herb advice and feedback.

think of it this way: if it's damage from lyme it would not get worse over the months/years would it ?
i fooled myself with this idea for a couple of years. i was getting worse and worse and i ended up on 9 months of antibiotics and my "damage from lyme" vanished....

chances are it's not damage but the active infection, simply because we all here treat ourselves with drugs incapable of killing more than 70%-80% of the bug (with exeception maybe of disulfiram/dapsone persister drugs).

20% survives, so why are we surprised it's not going away ... i dont know....

drugs are not the only way to skin this cat

"he last time I saw my cardiologist she asked me, “Can Lyme effect the heart?” i would buy them a copy of dr neils spectors gone in a heartbeat...lol
https://youtu.be/ja9iflckw-y

Girlie said...
[
Why do you say “drugs incapable of killing more than 70%-80% of the bug (with exeception maybe of disulfiram/dapsone persister drugs).” ?

because they are not, and now we have the backing of the science, we KNOW these drugs dont kill everything or at least almost everything. 70% is really bad score. i havent said people are not recovering, ive said the bacteria does not die. i bet my money if we test any of these people that were previously bitten they will test positive for borrelia. and they will always be. tertiary syphilis is the same, it treatable but u cannot cure it. decades later you can relapse. and this is a simpler spirochete than lyme, much much more studied...

anyway, again, im not saying people should lose hope or they should not treat , but i would be very skeptical of people claiming they are cured of chronic lyme ...

in the same way people coming back years after they were sick and recovered, saying "i was bitten again and got again lyme" im also quite skeptical --- this can very well be their past infection relapsing, i think there's a 50/50 chance they just relapsed during a stressful time in their life/surgery/etc as it so often happens ...

so my hope is what sebreg is going through now with this new treatment, will help many people recover "more fully" like be left with much fewer bacteria than previously and get more towards a cure.

makes sense?

Post Edited (mpost) : 9/1/2019 1:47:01 PM (GMT-6)

"sounds like you don't have bartonella because once you add that to the mix of lyme or anything else you're pretty much screwed. i've known very few people with a known confirmed bartonella infection to get into full remission and boy do i know lots of people who've done every imaginable modality to treat this."

Wow that really sucks. I had a feeling but didn't really want a confirmation.