HealingWell
Search Close Search
☰

Lyme, who to belive? | (Now a kind of Lyme Diary)

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/10/2023 10:48 AM (GMT 0)
its good to hear you are able to access some medical care for your illness

its easy to get overwhelmed with worry - being ill with a serious illness is after all a worrying thing

in addition, the disease causes ongoing inflammation in the body and brain - and this makes us all stressed, irritable and anxious to some degree.

i think this is making you think or assume things that are feeding into this worry cycle - but not necessarily true - eg

that your symptoms are atypical and therefore even more worrying
- however as far as i can see from what you have described your symptoms seem quite typical for what we see described in the literature and from others in this community

that you are likely to be having adverse drug reactions - its wise to be aware of what these can be - but most such reactions are comparatively rare - and just because they can happen, does not mean they are happening. The drugs information leaflet will describe what signs to look for - if these actual signs (as opposed to some extrapolation of them in your mind ) are in fact present - then of course its wise to see your doctor. but you seem to have done this already and the doctors have reassured you - i also do not see anything obvious in what you describe to lead me to believe that is what is happening either.

there are endless things like this a person can worry about if they let themselves

i mention this as its easy to disappear down a rabbit hole of worry with this illness - and that in turn makes your stress levels much worse - and that makes inflammation worse - and this all hinders recovery - so its important to try to keep some perspective.

dealing with this illness emotionally and mentally when your brain is inflamed is challenging.
it should help you to take some steps to proactively manage stress - so that your are not just reacting and rolling your worries around in your head in every waking moment, all the time.
for example - use some form of relaxation of meditation to give your mind and body a break from the worrying - or - to spend some time in nature if you are able to get out at all.
or - anything which distracts your mind from reverting to cycles of worry can be helpful.

again - what you are experiencing is distressing - but not necessarily atypical - recovery is possible - many here have been through it and got better. You can too.
Posted 8/10/2023 2:27 PM (GMT 0)

BlazerGermany said...
I am worrying a Lot too, because my Symptoms are 99% Heart related and that makes me Freak Out aswell. High Heart rate, intense chest pain, Low HRV, you Name it..

Damn, good luck with that. Fortunately I don't feel having symptom related to heart. I used to have strange palpitation at the beginning, but it stopped since. Now my blood pressure is even quite "low" (11/7).

Garzie said...
i think this is making you think or assume things that are feeding into this worry cycle

Yeah indeed it is... Live with these discomforts is terrible. Do not understand what is happening in our body, always doubt, know that we can faint at any time... It’s like living with a sword of Damocles over your head, in addition to being limited in your activities.
Posted 8/11/2023 2:36 PM (GMT 0)
Hello! I just wanted to make a comment regarding your symptoms. In addition to the coinfection, bartonella, that Garzie mentioned, you also have a lot of symptoms suggestive of babesia (head pressure, brain fog, feeling like you aren’t getting enough oxygen which is sometimes called air hunger). I suspect the almost fainting feeling and possibly the vision like before syncope could be POTS - postural orthostatic tachycardia syndrome.

Just so you’re aware, Dr J in the US, who is a respected LLMD treats all his patients for babesia first, whether they have a positive test or not. He seems to believe that treating babesia first enables treatment for Lyme and bartonella to be more straightforward and effective.

Are the doctors at this clinic well-versed and experienced in treating coinfections like babesia and bartonella successfully? If not, maybe they would be willing to consult with someone like Dr J and follow his treatment protocols, assuming you will be able to get the drugs needed for treatment.

Additionally, you may also be experiencing MCAS (mast cell activation syndrome), which is very common in Lyme patients, especially those with bartonella. Treating MCAS before and during treatment for Lyme/co can potentially reduce inflammation and pain and make treatment more bearable and safe.

There are many posts here regarding both POTS and MCAS.

You are right to be concerned about intracranial hypertension, especially considering the head pressure and depersonalization/derealization. I assume there is a test for that. Trust your gut. If you feel like that is happening, don’t be afraid to bring it up again.
Posted 10/1/2023 4:44 PM (GMT 0)
Hi,

Yeah, but my doctor wants to treat the borelias and reduce my symptoms before testing for coinfections. I don't know why she doesn't want to do it now, she says "it's too soon".

Since my last message, there was one evening when the headaches had become unbearable. I went back to see a doctor (unfortunately the replacement) who told me that we could try stopping the Minocycline and switching to Doxycycline + Zithromax instead.

I tolerated this ABX combination better, but my other symptoms persisted just as much.
I saw my real doctor again last week, and he wants to tell me that these ABX are not effective enough to eliminate the bacteria because they have no intracellular action.

So I'm forced to go back on the Minocycline starting tomorrow... But this time I'll be taking 150mg/day instead of 200.

I also have yet another probiotic, zeolite + turmeric, which I had to start three days ago. And I'm taking again MetaClear (detox/support for liver function) and MetaRelax (glycerophosphate-based dietary supplement).
I don't know if it's related, but since I've been taking them, I feel even more high. I'm back in a state of derealization I haven't had for a month. It's been a meager respite...
I really feel like my brain's going to give in, it's so weird.
I feel like I've lost a degree of lucidity.
Posted 10/1/2023 6:58 PM (GMT 0)
Noxon: I found borrelia the most difficult infection to eliminate, and treated everything else first. If you try to treat borrelia first, you probably won't make much progress on anything else.

Regarding minocycline not having intracellular action, this is okay. While it would not kill the intracellular bartonella, it would kill the active bacteria. Once I felt better then I could slowly attack the intracellular bartonella with other things, then when the bart came out, kill it with minocycline. This was how I got rid of bartonella.

I found that bartonella was resistant to zithromax unless I took atovaquone with it. Be aware that some people have reported that atovaquone can cause bartonella to flare up, which implies that it might hit the intracellular bartonella to some degree. Unfortunately, without atovaquone I found zithromax useless, bartonella was resistant to it.

After I got rid of the bartonella, then I could better deal with borrelia. Minocycline won't do that much to borrelia, but that was okay since it didn't make me herx so much from borrelia while I was dealing with bartonella.
Posted 10/6/2023 8:24 PM (GMT 0)
Well, my doctor said the opposite concerning the order. That's weird. :/
I started Minocycline 3 days ago, now I'm completely drunk again. I don't feel alive anymore, all symptoms came back like the first time I took them. I can't even explain how I feel, it's like an unberable bad dream.
There is a study that relates this depersonalization and other troubles while taking this medicine: https://www.medscape.com/s/viewarticle/468728_3?form=fpf

I don't think I can support them for ten days. They are killing me faster than the disease.
Posted 10/7/2023 5:50 AM (GMT 0)
Questions: did you Drink tho?

I could never tolerate Alcohol since i got sick
Posted 10/7/2023 5:04 PM (GMT 0)
it could be a reaction to minocycline - but from the accounts from others here who have taken it that seems pretty rare.

be aware that any antibiotic can cause a dramatic increase in symptoms and even new symptoms due to the herxhiemer type reactions -

so, if you have derealisation already, or have had it before - its quite common for that to be increased when suffering herxhiemer reactions from antibiotics - sometimes severely - and especially from those antibiotics that have good CNS penetration like minocycline.

it may diminish over time

or you may be able to lessen the effect by reducing the dose or taking it every other day (it has a long half life - so blood levels will still stay above active levels)

ref - not having intracellular action - there are no perfect lyme or bartonella drugs as yet
but there are multiple studies released recently showing many people do recover from lyme and bartonella on combinations of doxycycline/minocycline, azithromycin and rifampicin. with or without other common Lyme bart drugs

if you are not able to tolerate full doses initially - consider ramping up gradually over time - after all lyme treatment is a marathon not a sprint - and sometimes slow is fast

or consider pulsing approaches - there are studies showing even a single antibiotic can kill all lyme spirochetes when pulsed - when the same antibiotic combined with 2 or 3 others when given continuously does not kill all spirochetes.
well respected Lyme doctors like Dr J uses 2 weeks on (Mon, Weds, Fri) 1 week off, which also makes treatment more tolerable
Posted 10/8/2023 8:01 PM (GMT 0)

BlazerGermany said...
Questions: did you Drink tho?

I could never tolerate Alcohol since i got sick

Nowadays, very rarely. It is already rare when I feel good enough to hang out.
During aperitif or dinning I don't use to drink so much, maybe one or two beers / glasses of wine for the whole evening, so I don't feel anything.

However... When I was younger (during my 18-23 yo) I used to drink a lot during parties and the hangovers were hard, but not that bad, just regular ones.
After my 25 when my symptoms started, it became harder and harder to tolerate alcohol. The hangovers progressively became abnormal, like with hard palpitations, hand tremors, tachycardia, real discomfort, drowsiness... I felt like something went wrong.
Posted 10/12/2023 5:40 PM (GMT 0)

Garzie said...
or consider pulsing approaches - there are studies showing even a single antibiotic can kill all lyme spirochetes when pulsed - when the same antibiotic combined with 2 or 3 others when given continuously does not kill all spirochetes.
well respected Lyme doctors like Dr J uses 2 weeks on (Mon, Weds, Fri) 1 week off, which also makes treatment more tolerable

Well, I waited to answer this since I had an appointment with my doctor today.

The first week I started Minocycline again were okay. But I began to feel dizzy and have some headaches sometimes, nothing so wrong.
But then... then... the three last days were just unbearable. I lowered the dose from 150 to 100mg, but it didn't change anything.

I'm now stuck in a kind of extreme derealization state. I still have pressures in the head, nausea.
I remember having explained the feeling of loosing all knowledge, all memories, feeling rebooted. I'm experiencing it as never before... my soul is lost, in a body it is not sure to own. It is a real pain. I already experienced DP/DR many time since four years, but this is another level. Probably the most a body can endure before yielding.
It's not explainable with words, I just don't feel alive, I don't feel the world around me. I can only feel severe pain and anxiety, it's like I'm stuck in a nightmare since three day, not truly awake, at the gates of coma.
The only thing that reassure me now is that at worst I would die, and this will be the end of this suffering.

The doctor said we stop the ABX. I'm going to try bactericidal essential oils.
Besides that I must follow the medicine field already set up since some months (probiotic with tumeric, metarelax, metaclear, etc.).

I know my messages I post here may sound alarming, like I'm exaggerating, or I seem very weak-minded.
I went through many injuries in my life, a lot of broken bones, whose heel I haven’t even cared for, 2nd degree burns on hands, hard Covid (combined with Lyme), etc. But I can said without any hesitation that the current psychological symptoms I'm experimenting make all these things sounds like tiny scratches. I can't even understand how I can tolerate this without fainting. Sometime I wonder if I'm not already dead and if it is not the reason why things seems so unreal around me.

I really wish nobody go through it.
Posted 10/12/2023 7:23 PM (GMT 0)
Noxon, I can relate to your circumstances when I started the Minocycline as well. Had very similar symptoms, and it felt horrible. I slowed things down substantially and it eventually abated - and I was able to titrate up to goal dose. I'm so sorry your going though this - stay strong!

By the way - I do enjoy the occassional gin and tonic, you have to live a bitsmile
Posted 10/13/2023 11:45 AM (GMT 0)
there are many antibiotics that are active for lyme and bart - so you could try alternates
azithromycin, clarithromycin, cephalosporins, other tetracyclines, beta-lactam types like penicillin or amoxillin

you could try some of these alternates

typically they are used in combinations for better effectiveness - but if you are having severe flares of symptoms due to herxhiemer reactions you may just need to ramp up much more slowly - as SlowButSteady suggests

lyme treatment is often like this - and tends to be a marathon not a sprint - so you can afford to go slow and steadily and manage to be consistent that way.

as treatment is often a slow process - especially if symptoms flares / herxhiemer limit the pace at which you can go ( something very common in this population ) in the mean time - you may wish to tackle the issue from more than one direction

have you tried any professional help with the mental heath struggles you are experiencing?
(These are not your fault - but a symptom of the disease caused by changes in the brain - like changes in microcirculation and inflammation).
Posted 10/13/2023 5:03 PM (GMT 0)
Yes, I was supervised by a psychiatrist, but he wasn't very helpful. He said my symptoms were atypical. We tried antidepressants (which I'm still taking, because of the brain zaps) and even low-dose neuroleptics, but they just made me feel worse, so we stopped them.

That's when I got back on the physiological track and took my LTT to screen for Lyme disease.

In fact, every medication I take seems to make my condition worse... I'm beginning to wonder whether the Covid I had repeatedly between 2020 and 2022 has succeeded in breaking my blood-brain barrier, so that all the molecules I'm absorbing are reaching my brain in full force.

I would have been okay to lower the process with ABX, but I follow what my doctor says me to do. She didn't talk about going under 100mg or combining ABX. She decided to change the whole treatment method with a natural way.

Post Edited (Noxon) : 10/13/2023 9:06:05 AM (GMT-8)

Posted 10/13/2023 6:18 PM (GMT 0)
covid and repeated covid can definitely make lyme and bart symptoms much worse

it basically increases inflammation and immune dysregulation - which is already high and driving most of your symptoms - so it tends to overload the body and all symptoms increase as a result.

Covid also seems to have some unusual properties - especially in people with co-morbidities - where it seems to drive longer lasting symptoms.
its not yet clear if this is due to some kind of low level ongoing viral infection with SARS-Cov2 - or due to some immune dysregulating action that the virus causes.

there is some evidence that it causes ongoing inflammation in the microcirculation and micro clots with could be the cause of dysfunction in many organ systems - but particularly in the most sensitive organs like the brain, eyes etc - and this could be responsible for worsened symptoms since COVID infection

it might be worth trying some of the treatments advocated by the Medical doctors in this group for long COVID

https://covid19criticalcare.com/protocol/i-recover-long-covid-treatment/

i know you need to start somewhere, and will need to tread carefully if experiencing symptoms flares to treatments
but lyme and bartonella are each complex difficult to treat diseases in their own right
combining this with long COVID type effects - another complex and difficult to treat illness - may mean you need to take a multimodal approach to treatment to make progress.

often in the early stages - getting some of the basic things like diet, sleep, lifestyle changes, stress management, etc ( anything that helps your body normalise and regulate itself better ) can be as important or more important than antimicrobials - as they can improve your overall condition and make treatment more tolerable.

often these things need to be layered in one at a time to help your body from multiple different angles
Posted 10/14/2023 4:32 PM (GMT 0)

Garzie said...
covid and repeated covid can definitely make lyme and bart symptoms much worse [...]
i know you need to start somewhere, and will need to tread carefully if experiencing symptoms flares to treatments
but lyme and bartonella are each complex difficult to treat diseases in their own right combining this with long COVID type effects - another complex and difficult to treat illness - may mean you need to take a multimodal approach to treatment to make progress.

That's possible. But these are many things...
I don't know what happen in my body and I bet we will never know exactly. Maybe in 50 years when we will have better medical tools... Still doubting having Lyme sometimes.
I don't think I've comorbidities (no diabetes, good BMI, good heart, no immune defense problem) except if Lyme can be considered as one. And I don't have typical long-covid symptoms, so I don't know if it can be related TBH.
Except for small clots or BBB damages that can maybe correlate.

Garzie said...
often in the early stages - getting some of the basic things like diet, sleep, lifestyle changes, stress management, etc ( anything that helps your body normalise and regulate itself better ) can be as important or more important than antimicrobials - as they can improve your overall condition and make treatment more tolerable.

I think I already do my best. I almost don't work anymore since I'm unable to do so most of the time.
I try to eat healthy (with some exceptions) and continue my probiotic treatment. I sleep 10+ hours a day, I can't do less, too exhausted... Can't exercise anymore though. sad
Posted 10/14/2023 6:14 PM (GMT 0)
yes, i was referring to lyme and coinfections as a co-morbidity - in terms of COVID and immune disruption.

by which i mean - when you already have lyme and/or co-infections - and you get covid or repeated covid it can disrupt your immune system and make it do very strange things.

this is not necessarily typical long COVID - if that is even a clear syndrome - as there is a great deal of heterogenicity in people with long COVID - every person is different - and in persons with lyme and co may be even more varied

for example, in my case i got heart problems after two bouts of covid close together - but no other lasting effects that i know of.

my main message is to try not to expect any single drug or herb or treatment to be "the cure" but to think in terms of finding as many levers to pull to aid your health as is possible (even if individually they make only a very small difference) and gradually work on improving those over time.

most of the people here who have recovered have taken this approach
and this is also what the protocols described by the most respected Lyme doctors also reflect.

all the best!
Posted 10/26/2023 6:47 PM (GMT 0)
Well, I will share some news.

I started bactericidal essential oils 10 days ago now, increasing the droplets dosage each week.
My severe depersonalization/derealization state was gone 3-4 days after I stopped Minocycline.

Basically my old symptoms came back, but at least I don't have severe psychological/neurological issues.
I now experiment:
  • Tiredness
  • Muscle soreness
  • Insomnia and hypersomnia when I finally fall asleep (more than 10h per day)
  • Strong night sweats came back
  • Sometime severe headhaches (behind eyes and in various locations) that can't be soothe with paracetamol
  • Light brainfog still
  • Anxiety feeling (even severe sometimes) for absolutely no reason
  • Discomfort sometimes

My body also seems to no longer tolerate all the food supplements I'm supposed to swallow.
I have a disgust when taking them and get nausea in the following minutes/hours
I've a lot of them, I'm not even sure it is good for the body to take so much. My doctor added them up but I'm not sure she is aware she ask me to take like 12 pills per day besides the essential oils...
I think I will reduce them.
Posted 10/26/2023 7:16 PM (GMT 0)
thanks for the update

what doses of essential oils are you using ?

they can be powerful - so i wonder if they could be causing herx reactions that might account for some of your symptoms
Posted 10/30/2023 6:43 PM (GMT 0)
Possibly.
The medical office sold me "Klinghardt-Spezial by dr. STEIDL" oils.
I started at 2 droplets per day (1 morning 1 evening). I need to increase it by 2 each week. So now I'm at 4 droplets per day (2 morning 2 evening).
Posted 10/31/2023 8:33 AM (GMT 0)
I looked it up.
Unfortunately its a proprietary blend in a carrier oil and so there is no information on doses of the active oils.

Some are quite powerful - like clove
Others are not - like walnut - Or are carriers only.

the list of ingredients does seem to include several with known antimicrobial properties
cinnamon, thyme, oregano, rosemary, tea tree, etc

its just hard to advise on dosage - or know what to expect in terms of herx - as i have no info on how much of these is in the blend - so i would just follow the providers guidance on that

As a guide. I found 4 drops of pure oregano essential oil very powerful.

Quote from website

“Recipe according to Dr. Klinghardt (previously "Rizol Klinghardt Spezial"), Mixture of Rizol raw material (olive oil and castor oil enriched with active oxygen) and a blend of other oils according composition.

Ingredients: active oxygen complex (oxonised oils: castor oil and olive oil), geranium oil, walnut oil, clove oil, warmwood oil, black cumin oil, thyme oil, bitter almond oil, frankincence oil, marjoram oil, rosemary oil, origanium oil, garlic oil, mustard oil, onion oil, tea tree oil, cinnamon oil”
Posted 11/15/2023 7:57 PM (GMT 0)
Phew, I went to my doctor yesterday to make a point. She said in order to increase the Rizol drops I need help to eliminate toxins. Now I have a bunch of medication to eat every day...

  • Active oils (Rizol) still : 3-0-3 drops per day.
  • Nutrimonium: 1 /day
  • Metaclear: 2 /day
  • Metarelax: 2 /day
  • D-Cure 25K UI: 1cp /week
  • Oxyperm: 1 cp /day
  • Ashwaganda: 1 /day

My physical & mental symptoms still fluctuate from one day to another.
  • Tiredness & weakness still here.
  • Casual nystagmus and black flashes came back.
  • Acid reflux sometimes.
  • Tachycardia / palpitations some days.
  • Insomnia and hypersomnia still here.
  • Weird dreams during night that make me feel weird even during the day. I feel a bit lost. Hope I'm not progressively loosing my mind...
  • Latent anxiety + always this bad feeling of being be at the end of my life. I already had it some months ago, it is really annoying.

I'm afraid that Lyme or co-infection did damage my brain somehow. This is rather hard to explain.
Still doubting about the fact it is Lyme sometimes, I hope I don't have other hidden disease...
Posted 11/16/2023 11:24 AM (GMT 0)
these infections cause a lot of disturbance to our normal thought processes

things like anxiety, depression, derealisation, obsessive thoughts - or just preoccupation with certain fearful themes are all very common. especially during treatment - which often ramps up symptoms

your brain will indeed feel damaged while you are suffering with the disease - this is normal - but this is not permanent and most people recover fully with adequate treatment

try to recognise these preoccupations for what they are - and occupy your brain with more positive or productive or tasks so it cannot default back into that pattern for so much of your day.

its not reality - its just your mind dwelling on what it fears - but that can expand to fill your days and seem like reality if that's all your brain spends its time doing all day.

when it comes to brain function - what fires together wires together - so its important to try ensure you are deliberate about what you spend your time thinking about - not just defaulting into revolving thoughts of fear and despair

audiobooks, time in nature, forms of meditation etc can all replace time spend brooding and make a big difference to how you feel while you go through this.

this is not your fault - there is a very real biological illness at work - but since it takes time to treat the biological illness - we still have to do our part to form positive habits and mental health practices. otherwise we expose our minds to a double whammy of biological illness and poor mental habits.

if you feel like this may be too much for you on your own - you may want to reach out for professional help to aid you with this.

by the way - the mental / neurological symptoms along with acid reflux, heart rhythm anomalies, mental state alterations like feelings of impending doom, excessive fatigue and sleep problems are fairly general to lyme disease but are especially prevalent in people with bartonella - so i would ensure treatment covers this organisms also.

keep up the good work and keep us posted !
Posted 11/17/2023 5:09 PM (GMT 0)
Hi, thanks for your reply.
Yes, anxiety rised since I'm experimenting some weird states again, especially since I don't have good sleep these days... The DP/DR states I had some months ago were a pure hell, I don't want to experiment that again...
I know something changed since, it traumatized me for life. Sometimes I really feel like I'm about to die... What a crap illness...

Concerning co-infection, like bartonella, my doctor didn't say more about it since the first day. I should ask her next time.

Post Edited (Noxon) : 11/17/2023 9:13:09 AM (GMT-8)

Posted 12/13/2023 11:26 PM (GMT 0)
Hi there, I hope everyone is well (or better).
I've come to continue my diary.

So I saw my doctor again two days ago. Nothing much came of it this time.
She says, to her, I'm getting "better" because some symptoms have disappeared, but she doesn't take into account that the ones that persist have been exacerbated.

Physically, I've become really weak. I immediately feel a sort of malaise at the slightest physical action, whether I'm walking, cleaning the house...
I've lost so much strength that I can't lift anything too heavy.
I've got a sort of pulling sensation in my knuckles, as if the blood was having trouble circulating there.

As for my mental state, I've been having a relapse for a few days now.
It's really hard to explain. You could put it down to derealization, but it goes deeper than that.
I feel like I'm halfway between a conscious and unconscious state. It's as if I were a machine with the power cable half-disconnected.
My vision is hazy, my memories near and far are blurred. My emotions are absent, everything seems very bland. I don't even feel for my partner anymore.
At times I wonder if I'm still alive, what life is, what it's like to be conscious. It's so crazy...
It's an atrocious state. I don't feel living. On top of that, I get migraines all the time.

I asked for another check-up but my doctor said it wasn't necessary. She's still convinced it's Lyme desease, despite the treatments I've been on for the past 5 months, which don't seem to have any benefit.
I now have to eat about twenty pills a day. That's so much medication that I skip meals altogether. My stomach is full of them at lunchtime, and I can't swallow anything else except a cup of coffee.

I'm wondering whether I shouldn't change doctors and open myself up to other possibilities.
If this keeps up, I won't last long.
Posted 12/14/2023 4:42 AM (GMT 0)
I feel the same way. Many symptoms have resolved with treatment, but I still feel tired all the time. It seems that no matter how much or how little bacteria are left, my immune system reacts to it the same.

If I take anti-inflammatories, then I feel better temporarily but this puts me at risk of viral/fungal infections, and I detox even more when it wears off.

Do I have to 100% get rid of all the infections before I feel better?

The thing where I felt like I had poor circulation in my fingers has mostly resolved now. The headaches aren't quite so bad now either. I am just tired all the time. I can't clean house either, because I am too weak.
✚ New Topic ✚ Reply
123