My story

Hello and Welcome Kara

the ketogenic paleo style diet has helped me considerably - i think its a good move.

the data in the well performed studies shows that 2 weeks of doxycycline are often not enough to resolve even acute lyme disease - so if it were me i would continue with the abx while its relatively early stage.

you do not want it to become chronic if you have a chance of catching it early - as many here have been fighting chronic lyme for many years - and its a very long and hard road to travel.

i was mis-diagnosed for years and even triple antibiotics were not enough to resolve it after 4 years of misdiagnosis.

treatment choices are of course very personal and tied to each individuals values and beliefs so we each have to navigate this in our own way.

however, its worth noting that the largest number of people seem to get better with antibiotics
after that its probably with herbs
after that it starts to get into the fringes - rife, BVT, and the completely unfounded

i was very reluctant to take antibiotics because i had read how much they harm the gut etc
but with lyme the gut is already messed up anyway - and mine is better afterwards not worse - so i actually wish i had taken them sooner.

i am now using antibiotics and herbs - and other approaches ( see my sig) and finally making progress
but if this could have been caught in the first 6 months and treated appropriately i would probably not have lost these 8 years of my life, or my fiancé, or my job or my house.
what i mean to say is its better to treat adequately early on than deal with the consequences of years of chronic disease.

i generally advise people to think about this life altering choice very logically:
-start with the things that have helped the largest number of people first
( as these are the most likely to help you also ) and not start with the fringe therapies
-those things will still be around if you are unlucky and the mainstream treatments do not work for you.

i would also say beware of charlatans and the delusional practitioners out there that prey on sick and desperate people with lyme. The USA seems to have more than its fair share of those and they are often charismatic people who can suck you in - especially if its something you want to believe in.

i have to say "Lyme N" - has all the signs of being one of those to me.

if you start a thread - "Help me find a LLMD in XX" people here will likely give you some other options

ask lots of questions here - they are a knowledgeable and helpful bunch

all the best!

Also wanted to welcome you to forum, though I’m sorry you are dealing with Lyme.

Garzie pretty much covered what is needed, especially the area covering how important it is to treat longer once diagnosed. It took 11 years for me, which made the road to “better” much harder. Got there then had a surgery, which allowed Lyme and more to come back while body was under stress.

And congratulations on having your child.

Welcome to the forum. This place is not as busy as it used to be but there’s some good knowledge here.

Your symptoms all look familiar.

I remember my hands going asleep tingling and getting shocks waking me up when I was trying to sleep .
I had insomnia anyways so it’s not like I was sleeping. That was annoying and lasted about four years because I wasn’t treating lyme yet.

I prob had tick infections for possibly 30-35 years off on before I actually started treating it. I functioned in my 20s but in my late mid 40s it was pretty hard to do anything.

I’m really hoping you get this tackled early on.!

Kara NH said...
Thank you so much for your thoughtful and detailed reply!

My doctor does prescribe antibiotics as well and I have 3 months of doxycycline prescribed to me currently. He may layer on others. I am afraid of the ototoxicity after I had the increase in ear sounds.

Do you find there is a good outcome when starting treatment ~6months post bite?

I’m so sorry to hear about your experience over these past several years 😢

to my knowledge there is no known issue with ototoxicity with doxycycline - its is one of the safest antibiotics we have. ototoxicity is mainly something associated with aminoglycosides (gentamycin, tobramycin) a different and rarely used antibiotic class.

increase in ear sounds is something many of us have from lyme and co infections - ringing, whining buzzing noises that come and go or whooshing pulse noises. these may get louder when treating (they do for me) but is not the same as ototoxicity, and usually resolves with successful treatment.

the general rule with lyme treatment is the sooner you treat the better.

the longer the infection has to get established the harder it will be to treat

generally - the condition is regarded as chronic after around 6 months.

treating within the first few months as you are - has better chances of success than treating later.

that's why i would say use this opportunity to treat with some proven effective treatment rather than use that time to roll the dice on something from the fringes and loose the chance.

all the best

Post Edited (Garzie) : 12/5/2022 12:45:15 PM (GMT-8)

Welcome, Kara!

Is it possible that we know each other from a different Lyme forum? Am I correct in remembering that you have a longer history of symptoms that you attributed to mold exposure? Please forgive me if I'm confusing you with someone else. I just wanted to ask how you are doing with that element, since your current symptoms also can be caused by mold exposure.

I hope you find a healing path that works for you and your family very soon!

Kara NH said...
Thanks for your response! Did your insomnia and arms falling asleep go away with the treatment?

It probably will for you since you are treating it early.

Myself? Not easy to answer. Three decades makes it a different game, so I had to do much, much more. No computers then either. No help. I noticed my health was goofy as a Pre-teen in the 70’s (!).

Then in early 1990,s as a young man, I first sought symptom specific treatments.....for many symptoms. No one knew the root cause of all my symptoms. No computer, no health websites invented yet anyway. Symptoms treatments helped a minimaly. Hands turned into Carple tunnel which is physical nerve damage. Pills /abx don’t just fix long term damage. But they will stop the progression. So I learned many varieties of muscle, tendon snd nerve release. This helped, but I had to keep doing it or more progression went on. I thought I had MS. Drs were clueless.

Fast forward....I did not know what an llmd was till 2014. Then went to one. Lyme abx fixed both of these symptoms plus others up to about 75%. Then I had to work on stress management which helped sleep more. And diet. And more tissue repair and pt. No more hands falling asleep unless I’m doing extensive hand labor tasks - then I wear a writs spoon at night (only a couple times a year).

(I prob had up to 25 tick bites from 5 till the age of 40- I’m an outdoors nut and eventually suspected lyme. ).

mid fifties today feel 85-90% better. This is to be expected from decades of it. Other long timers have had same outcomes.

MargaritaLyme said...
Hi Garzie! I wondered if you wouldn’t mind answering a question about your treatment-you mentioned that the triple antibiotic therapy wasn’t working since you had been chronic for four years. What led you to conclude they weren’t working? Could you pinpoint anything in particular? And have you since revisited the same regimen? And if not, I am truly curious to learn your rationale for trying something different. thank you.

hi, sure, i can explain what happened in my case and how i interpreted it.

i went from Doctor to Doctor for around 5 years with diagnosis of CFS or fibromyalgia etc but got no help. UK NHS tests for lyme were negative. Eventually a half decent rheumatologist i was seeing for "CFS" suggested private testing for lyme - as she was aware that NHS tests for lyme were not perfect and she thought my symptoms could be lyme.

i was tested for lyme and co-infections by Armin lab in Germany and came back positive for lyme and mycoplasma pneumoniae.

i was a bit reluctant to take antibiotics at all as had been following lots of functional health stuff an gut health stuff and that emphasise the damage antibiotics can do to the microbiome,

but by this stage i had tried many natural approaches and they didn't seem to be helping me much.

so i felt my life was passing me by - i was too ill to work or do much of anything - so decided i would try them.

my GP would only prescribe 6 weeks of doxycycline initially - i got a bit worse for the first month or so - then a bit better - so he agreed to extend for another 6 weeks.

i felt they were doing something helpful - but not enough - so i added to the doxycycline, rifampicin and azithromycin for another 3-4 months ( these ABX are active for both Lyme and bartonella - which i had long suspected based on symptoms) - again i was a bit worse for a while and then somewhat improved - maybe maximum 30% better (so perhaps 30% improvement in fatigue, pain, gut problems etc)

however, at that point my liver enzymes went very high - around double the upper normal limit and i was concerned - and stopped the abx for fear of liver damage.

so my rational was that the antibiotics were kind of working - but not enough to cure me - and my liver was struggling with the combination - so i needed to regroup - let my liver recover and rethink.

i now know bartonella in particular is renowned for being very hard to get to respond at all in a few months - whereas lyme on its own usually responds sooner( but just keeps coming back)

i also now know that Bartonella specialists like Dr M - say their patients often have raised liver enzymes towards the end of effective treatment - and thinks its due to killing bartonella sequestered in liver cells - and he usually continues ABX unless liver enzymes get over 3-4x upper normal limit.

so its possible i may have had success if i had kept going with the antibiotics longer - but i didn't know that at the time and i decided to opt on the safe side for my liver and stop. there are no real LLMDs in the UK so i was on my own with this - and this was part of my decision to err on the side of safety.

My mindset at that time was more along the lines of - i just needed to find the right drug or drug combo, hit it hard for a few months and i would be cured.
The reality now seems to be for many people its more like years - and i couldn't stay on abx for years.

i have since opted for longer term sustainable treatment regimes that focus as much on the immune system recovery, and lifestyle factors, that help the body no matter what the illness, as it does antimicrobials.as per the things in my signature.

this approach has got me to around 60% recovered

i don't feel i am over the hump yet - but each week i am a little better

i don't think i will revisit the same combination again - now that know that bartonella is present with certainty - rather than just suspected (see my microscopy thread) and is likely to be my biggest issue and reason for my slow response, so my treatment is more tailored to that now.

i may add more antibiotics at some stage though - but my thinking is more along the lines of pulsing - and using adjunct like biofilm agents and fibrinolytic enzymes - while continuing all the other modalities that have helped me this far.

if you have more questions - ask away

Houttuynia sneaks up on you about 5-10 days after accumulation first use. Hang on!

I bought it dried (bag) and made tea out of it.

Also used many ABX's, for a total of about six, and usually used three different ones at once, taking liver tests every 6 weeks. With a few weeks off, I only did ABX for about 14 months.

Did a lot of gut work before and after. Your gut is a huge part of your immune system so I also did Leap Mediator Response Testing on how my blood reacts to 170 common US whole food items and common spices. This helped my immune system to some extent (mostly my autoimmune Hashimoto thyroid).

Post Edited (astroman) : 12/5/2022 2:25:23 PM (GMT-8)

Thank you Garzie for detailing your treatment experiences thus far. It makes sense that you would want to proceed with caution if liver enzymes became elevated. Treating infections must take the health of organs into consideration.

I completely agree with the school of thought that preaches care of the gut to boost immunity.you have made great progress.

By the way, in the thread on skin flare ups, noticed after a tick bite, you are the only other person besides myself to mention flaking, painful skin in the ears. . Do you attribute this symptom to infections? amongst other symptoms, I have dealt with this since childhood. Interestingly, it has finally resolved as I treat Lyme and cos.

Yes, I had the same scalp flaky patches/sores as well including the small ones on my upper lip. Absolutely amazing.

KaraNH, Good to hear you have resumed treatment. It wasn’t a surprise to read you experienced tinnitus as a die off reaction. A friend of mine who was treating with the same therapy I use actually quit treatment because his tinnitus kicked up so badly. This made me sad as I believe he needs to treat. He and I are cases in point, even drug free treatments can produce strong herxes.

Hang in there!

Kara NH said...
Hello,

I was bitten by a tick this past May, first tick bite in my life. I developed symptoms in August, heart racing, night sweats, chest pain, POTS, some joint pain. I was also bitten by black flies. Recently moved from the city to the country. More symptoms escalated the first week of September along with a viral illness.

Kara,

I mentioned mold in one response to another of your posts. I remembered seeing this in one of your first posts and the question of mold exposure immediately crossed my mind.

You were bit in May but didn’t develop symptoms until August, with more symptoms escalating the first week of September.

When did you move houses? Did you have any symptoms prior to moving?
——
Another random question: Did you have any dental work or issues from during or right before this time frame - root canal, amalgams removed or replaced?

Post Edited (WalkingbyFaith) : 12/7/2022 8:11:54 AM (GMT-8)