Sister with Lyme

Hello all,

I’m new to these forums. I’m actually posting regarding my sister, who has been dealing with chronic lyme for about 8-9 years (although for much of that time, she didn’t know what it was that she had). She’s not somebody who would seek out answers from support forums on her own, so I’m doing it on her behalf.

She started experiencing symptoms (primarily neuropathies and parasthesias) around ‘11-‘12, and started getting them checked out by mainstream doctors (through Kaiser). After 6 to 7 years of various diagnoses and treatments that were having no effect (same old story, right?), she finally saw a non-Kaiser doctor at an integrative clinic in late ‘18 who decided to test her for lyme, and the results came back positive. We’ve also since determined that she has a couple co-infections, Bartonella notable among them.

Since then, we’ve tried several therapies with a few different doctors (in fact, we ended up wasting about 9 months’ time with the first doctor, who seemingly was taking too lackadaisical and hands off an approach to her illness, so it’s really been only a little over a year since we began doing serious work). We’ve done a few different herbal protocols now, and she has altered her diet to be more autoimmune-friendly. She recently started doing light therapy (i.e. beaming different wavelengths into the bloodstream), and is considering doing HBOT. She has been doing sauna sessions for several months as well. Unfortunately, there hasn’t been much of an improvement as of yet. She is trying to avoid doing anything with antibiotics, as we’ve both read that they can be problematic for several reasons.

Her symptoms remain primarily neuromuscular. She has general pain throughout the body, although there are episodes of greater severity in specific regions, with her hands afflicted most recently. She also experiences light sensitivity, and has trouble, in particular, with looking at computer screens and backlit devices for more than a few minutes at a time. Thankfully, she hasn’t really had problems with internal organs (outside of some gut-related issues, which, as I understand it, are commonly comorbid with lyme). Her sleep is pretty good overall these days, but she’s had episodes of insomnia at various points in the past.

She’s been extremely depressed lately (she already suffers from chronic depression, which certainly hasn’t helped matters), and feels as though she’ll never improve. She keeps telling me that she has little to no faith that she’ll ever get back to any semblance of a normal life.

Is her post-diagnosis experience typical? Does it simply take a while to get relief from chronic lyme/find a set of therapies that works for the individual in question? More than anything else, I want to know that there’s hope for her. This is a truly frightening ailment that I hope becomes better understood by the medical community in the coming years.

If you have any thoughts on all this or reassurance or testimonials to offer, I would greatly appreciate it. Thanks so much.

I’m her brother, actually ;).

We’ve only recently become acquainted with Buhner’s work, and have not specifically tried any of his protocols. I’d be interested to hear more from members who have tried them.

Okay, so maybe we shouldn’t rule out antibiotics entirely, but I think we’ll still be forgoing them for the foreseeable future.

mak24 said...
I’m her brother, actually ;).

We’ve only recently become acquainted with Buhner’s work, and have not specifically tried any of his protocols. I’d be interested to hear more from members who have tried them.

Okay, so maybe we shouldn’t rule out antibiotics entirely, but I think we’ll still be forgoing them for the foreseeable future.

Sorry! I don't know why I assumed sister.....

If you do decide on Buhner protocols....there are many members who are knowledgeable and will be able to answer questions. I dabbled in it for lyme....and also did some buhner's herbs for Bartonella.

I actually don’t remember all of the details at the moment. I’d have to ask her and get back to you. She was living with me for a while, but she now lives with my folks. A lot of the tests and treatments were done in the time she’s been with them, so I wasn’t directly privy to a lot of it.

WalkingbyFaith said...
Hi and welcome!

Yes, there is hope!

It would help us understand more and have better suggestions if we knew a little more about her situation. You said she hasn’t had any improvement yet with sauna therapy, light therapy, or a few herbal protocols. You said she was tested and was positive for Lyme.

Do you know what kind of Lyme test she had and what lab?

Which herbal protocols did she do, and how long was she on them?

I still have to get the details of her lyme test.

When it comes to protocols, the two she was on previously were the Cowden and modified Cowden. Think she was on both for about 6 months, but can’t recall exactly. She just began the Zhang protocol about a month ago.

Periodically, she gets so down about things that it becomes suicidal thinking. I think she still has trouble with acceptance of her condition sometimes. Wondering if folks here can relate and have any tips for dealing with the feelings of depression and despair.

Mak, it means a lot that you are educating yourself about this illness and looking into ways to help your sister. Being able to understand the terms she uses, share information and options, and support her in practical ways are all huge for someone with such an overwhelming illness.

Having Lyme can be traumatic. As with any trauma, a range of extreme reactions can be fairly normal. There are many posts from people who want to die, just as a way to escape this disease that seems inescapable. Therapy can be helpful, but it's important to remember and validate for her that of course she wants this maddening disease to stop, of course she wants to end it however she can, of course she is grieving about the parts of her life she no longer has access to. Remind her that she's not alone, and then be there for her. If she needs to get to appointments but is too dizzy or weak to make it on her own, then drive her. If she can't afford a treatment or a specialist, then help find the money. If she needs to change her diet radically, then learn some new recipes.

As for protocols, a lot of people use Cowden, and it helps, but I rarely hear of anyone who feels like it really brought them to remission. Usually the herbal protocol that's most lauded is Buhner. People also see some benefit from Rawls's Vital Plan and Jernigan products. I'll be interested to see how Zhang works for her, since personally I have found acupuncture very helpful. Most people find that a change in diet is important, as well as basics like movement, stress management, quality sleep, reducing inflammation, addressing nutrient deficiencies, healing the gut and microbiome, detoxification, and fixing nervous system and immune system dysregulation. Sounds like she is addressing a lot of these things, which is great.

Has she had testing or clinical evaluation done for mast cell activation syndrome (MCAS), mold exposure, auto-immune illnesses, Candida overgrowth, and other issues common with Lyme? Sometimes not addressing those things can keep people from making progress.

It can take a very long time to find the right combination of therapies and see progress, and everyone's path is different. It can feel very discouraging to hear of someone who tries something that really helps them turn the corner and then you try the same thing and it makes you worse! It's maddening and demoralizing, even for someone without a history of depression. In your sister's case, I would emphasize gut health. The vast majority of neurotransmitters are made in the gut, so the dysbiosis and dysfunction caused by Lyme can wreak havoc on people's psychological states. Physical and mental health are not two separate systems, so focusing on improvement in the gut could be a key to easing some of the psychological burden.

Is there a Lyme support group in your area? Is she a member of any forums for people with chronic illness, like this one, or perhaps elsewhere? It can make a serious difference to feel like others understand what you are going through. When I first got sick, I was 33 and perfectly healthy, as were my friends, and I found myself thinking about my dead grandparents and an acquaintance who died at 29 (of ovarian cancer) just because they were the only people I had known who understood genuine disability and pain, hopelessness and despair, and feeling like there was no one who could help. Obviously thinking about dead people all day was not the best way to build resilience! It made a huge difference to connect with people online who were alive, interested, even enjoying their lives ... but also had Lyme and other complex chronic illnesses.

Hi Mak,

I've been on the Zhang protocol for a year. If she is taking the ArtM (maximum strength artemesinin) it can cause A LOT of depression. I was on it for 3 months - and while I think it worked well and killed off a lot of the bacteria - but it was definitely the hardest thing for me to tolerate mentally. I've talked to other people who felt the same way on it. Feel free to reach out through my email if you think it would be helpful for her to talk to someone on the same protocol. I don't know if anyone mentioned Rawls - but he has another herbal protocol that people like. For me, I was way too sick to try to comb through Buhner and put a protocol together myself.

Timelines vary so much. Not a helpful answer, right? ;)

Some people are on some level of treatment for life. Others find something that works well for them and feel much better after a few months. A lot of people who are in remission still live a somewhat modified life or take some sort of maintenance supplements. Most people have to try a few different things before they find the thing that helps them turn a corner. Many protocols take a few months before people see improvements, and because of herxing (and MCAS, and side effects, and individual sensitivities to ingredients, etc.) treatments often make people feel worse for a time. Sometimes people feel bad even after the infections themselves are no longer and issue because they have not addressed neurological damage, microbiome disturbance, leaky gut, etc. Some LLMDs advise people to push through as long as your baseline is still somewhat functional, and others disagree. Adjusting a protocol until you find the right balance is the right thing to do, since destabilizing your body can do more harm than good. Most people are doing a combination of supportive treatment and antimicrobial treatment, as described in WBF's great summary.

Not sure what you mean by pelvic pain, but many types of pelvic pain can be related to Lyme - connective tissue issues, alignment issues, organ pain, nerve pain, bone pain.... Seeing a body worker (chiropractor, craniosacral therapist, osteopathic manipulation, massage therapist) and reducing inflammation (diet, curcumin, etc.) are likely to help. Depending on the issue, other supplements might help, too.

Feel free to post more details, and we'll be happy to weigh in and share experiences!

A short update: My sister's situation has not only not improved over the past couple months, it seems to have worsened. Every couple weeks, it seems, she has an episode of agonizing, debilitating pain that lasts for several days. My folks and I are at the point where we're wondering if a limited course of antibiotics may be necessary to deal with what seems to be issues of acute infection. (Again, this went untreated for 7-8 years, which may have contributed to the severity of things.) I know several people here have said we should keep antibiotics on the table as an option. The thing is, are the drawbacks of using them worse than for any other treatment? It seems like the reason that she was trying to avoid using them at all is that she had read that they could make the situation worse, and I've seen that assertion made by various sources. What is the truth here, exactly? I know it always varies from person to person, but it still seems like there must be some "rules" that have general applicability.

All of it is just frustrating and, needless to say, alarming. A big issue she has that I've become aware of is encephalitis, which may well be at the root of her neurological, musculoskeletal, and eye-related symptoms. Are there specific treatments that could mitigate that. What could help drain toxins that her body seems to have trouble expelling?

Any help would be appreciated. Thanks.

The episodes every few weeks - have those been just since starting treatment, therefore maybe herxes? Do they coincide with any part of her menstrual cycle (if she has one)?

as WBF mentions
and in my own experience - pretty much everything that helps me tends to make me feel worse for a month or so or at least a few weeks, to begin with. Often the things that end up helping the most make everything worse initially.

This includes herbs for Lyme. herbs for co-infections, antibiotics, certain supplements.
almost nothing just makes me feel better right away.
the increase in symptoms seems to be able to last months with some of the herbs i am using - but i am definitely slowly making progress

it is one of the things that makes finding the right treatment path very challenging
but just seems to be the way it is for many of us.

in my case - and in many others i read here - symptoms can flare for quite some time during treatment. These can be increases in previous symptoms or entirely new ones.
Monthly cycles of symptoms are quite common with Lyme and especially in women where these can coincide with the hormonal cycle.

i would also pass on that originally in my keenness to get well ASAP - my paradigm was that - "I just needed to find the right diagnosis ( Lyme or Bart or Mycoplasma? ) then hit it hard with a month or two of targeted intensive treatment and it should get better".
unfortunately, this made me very ill indeed and I was unable to sustain it.

more lately i have adjusted this view to - "i cannot be 100% certain what infection/infections are present and i cannot tolerate short sharp intensive treatments so i must take a very broad approach and go long and slow".
this broad approach includes everything that supports the body - rather than just antimicrobials / abx
1, extensive lifestyle changes - diet, sleep, exercise, stress management all had to be optimized
2, many herbs and supplements to reduce inflammation
3, herbs and supplements to modulate the immune system
4, then finally slowly introducing and ramping up anti-microbial herbs ( and some courses of ABX)

this approach is undoubtedly slower - and takes considerable dedication - but after being stuck too ill to function for years i am now moving forward and have recovered something like 50% of my previous function and enjoy my life each day.

ref antibiotics downsides -
i had also been following functional medicine paradigms for some time to try to manage my mysterious health issues prior to the Lyme diagnosis - and was very reluctant to use antibiotics for fear of damage to the gut microbiome and potentially mitochondria.

but after trying natural methods and getting only limited improvement i decided to try a combination of ABX - they did help but was not able to stay on them as long as i think would have been needed due to liver issues.
however, since stopping I have maintained the gains and not really experienced anything adverse I could attribute to the ABX
so I would use them again.

in your sister's case, i would say that it sounds like her condition is quite severe with potential ocular and CNS involvement - and therefore the balance of likely benefit vs harm points more towards in favor of using ABX.

note also - the risks and benefits of each antibiotic drug are different - not all are as damaging to the gut microbiome as others and some are relatively benign to the rest of the body.
others can have life-changing effects - so it's worth doing your research into each to select those with the best risk vs benefit profile for your sister.