Chronic Lyme? It's Official: Update in #107

[RegGuheert]

We got switched over to a new primary care doc!!!!!! This is a person at Kaiser that our ND has worked with in the past and recommends. Her service was closed but the ND asked her to take us on and she agreed. Yippee! We won't be able to get in until the 19th, but I'm very pleased with this development and looking forward to meeting her.

That's great news!  I know three weeks sounds like an eternity in your situation, but that is a much shorter wait than just about anyone I know when trying to get in to see a Lyme-literated doctor.  Here's hoping your new doctor knows Lyme and can start the process of healing for your daughter.

[Pen]

That's great news!  I know three weeks sounds like an eternity in your situation, but that is a much shorter wait than just about anyone I know when trying to get in to see a Lyme-literated doctor.  Here's hoping your new doctor knows Lyme and can start the process of healing for your daughter.

 

 

I think that may just be a new pediatrician, not an LLMD, but it is still great news!!!!

[Chrysalis Academy]

I think that may just be a new pediatrician, not an LLMD, but it is still great news!!!!

 

That is true, but we also have a LLMD/ND lined up for next month, too, so it's good on both fronts!

[Chrysalis Academy]

We spoke by phone with the Lyme ND today. He sounds fantastic, just exactly what we are looking for - Lyme literate/knowledgeable, but not solely focused on Lyme, he treats a variety of neurological issues and knows about POTS, JHS, etc. too. Committed to creating a personalized plan for dd, based on her situation & her symptoms, which may include abx & herbs & supplements. But a holistic, integrated plan to figure out what all is wrong with her, and treat it in a way that won't make her sicker.  We have an initial appointment with him tomorrow!  Guys, I feel like the cavalry is finally coming. It's about time.

[lewelma]

Oh Rose, I'm so pleased. Sending you positive thoughts.

[sassenach]

Great news! 

[Chrysalis Academy]

And . . . we have a diagnosis. Lyme disease, unequivocally.

 

I'm strangely euphoric - after a year of not knowing what was wrong and having no plan to fix it, I'm actually happy to have a dx and a plan for treatment. And a doctor we trust.

[Penguin]

So glad you can move forward, Rose. Mega hugs.

[Guest]

That's a long time to be sick and not know what's wrong. It's so much better to have a diagnosis and a plan. You must be so relieved.

[Butter]

I am SO glad you have an official diagnosis.  I totally understand how relieved you are feeling.

[Pen]

And . . . we have a diagnosis. Lyme disease, unequivocally.

 

I'm strangely euphoric - after a year of not knowing what was wrong and having no plan to fix it, I'm actually happy to have a dx and a plan for treatment. And a doctor we trust.

 

 

I think euphoric makes sense!!!!

 

Is it just Lyme dx? Or Lyme and some of Lyme's cohorts?  And what is the trusted doc's opinion of the mycoplasma?

 

 

 

Have you and they decided a plan of action now that you would be willing to share?

 

Now that you know for sure it is Lyme, I want to reiterate my suggestion about taking a year off from homeschool for dd1--or at least off until she is making progress and improving significantly week to week and can add on some extras without  stress, or aggravations of her condition in doing that.   This is something that she can get either at least a lot better from, or even really well and healthy. Give both you and her a rest from homeschool stress, IMO.

[Ali in OR]

Do they think it's from the exposure from so long ago, or is it possible there was a more recent exposure? Just curious.

[Chrysalis Academy]

I think euphoric makes sense!!!!

 

Is it just Lyme dx? Or Lyme and some of Lyme's cohorts?  And what is the trusted doc's opinion of the mycoplasma?

 

Have you and they decided a plan of action now that you would be willing to share?

 

Now that you know for sure it is Lyme, I want to reiterate my suggestion about taking a year off from homeschool for dd1--or at least off until she is making progress and improving significantly week to week and can add on some extras without  stress, or aggravations of her condition in doing that.   This is something that she can get either at least a lot better from, or even really well and healthy. Give both you and her a rest from homeschool stress, IMO.

 

Lyme and Mycoplasma for sure. He wants to check Bartonella, which we haven't tested for, and Babesia, which tested negative, too.  I don't think that she has Babesia because a main symptom there seems to be recurrent fevers, which she hasn't had at all. But Bartonella may be a factor.  The plan is to treat for two weeks with doxy, and then for two weeks with IV Cephtriaxone + IV Vit C, plus herbs, we started Meriva (curcumin) today, and we will add in other herbs in two weeks (many from Buhner - the cytokine herbs and others.) After that we'll move forward based on her response to the treatment and whatever symptoms are most troubling. Adaptive management, which makes sense to me as an ecologist. We're also shifting to an antiinflammatory diet and, as pain subsides (hopefully) starting to do some gentle exercise. After we've knocked down the infection we will work on rebuilding collagen structures. He wants to starve the beast at this point, rather than feed it, his philosophy is a little bit different from Buhner's in that respect, but I can live with it, he makes a reasonable case for this approach.

 

He also wants to do some more testing for lupus, given the family history and some observations he made during the physical exam. That could be autoimmunity caused by the Lyme, or it could be a genetic predisposition to autoimmunity that the Lyme caused to flare. He's also fairly certain that she has celiac's or some form of wheat/gluten allergy, but rather than pay out of pocket for extensive testing at this point, we're just removing it entirely from our diet, which isn't a challenge because I'm GF. 

 

He is also concerned about Rocky Mountain Spotted Fever because we spent a week camping in Wyoming a few years back. I haven't really researched that at all yet, so I don't have a current opinion. 

 

Do they think it's from the exposure from so long ago, or is it possible there was a more recent exposure? Just curious.

 

Well, despite the concern about the Wyoming trip, which was 3 years ago, he actually thinks that it's from a recent exposure. She was camping in a known Lyme area right before she got sick, and he thinks that is most likely when she got it. Which would be good, because it's a relatively recent exposure, compared to the tick bite when she was 3. But we will probably never know for sure. I think he's basing that assumption on the fact that her IgM was highly, conclusively positive for Lyme while her IgG was borderline. I've read conflicting things about the significance of IgM vs. IgG in Lyme, so I"m agnostic about that at this point.

Edited September 7, 2017 by Chrysalis Academy

[Lilaclady]

((((Hugs)))) glad you are finally able to start treatment. Hope it all works well and she is able to recover fully. It's a long journey and you have been doing an awesome job managing it. (((Hugs)))

[Chrysalis Academy]

Ok, looking into Bartonella and RMSV, those don't seem to fit her symptoms that closely. So I'm not going to stress about that at this point, we'll see how she responds to the Bb treatment.

[Spryte]

I'm so glad you will have a good LL doc on your side.

 

Yay for answers!

 

I meant to pm you, but have had pneumonia for three weeks. Ugh. But super happy to hear you have made such great progress.

 

May the path to wellness be as quick and painless as possible, with minimal herxing.

[RootAnn]

I am glad to hear you have a champion on your side finally and a plan moving forward. While I am sure all will not be smooth sailing, I wish for a less bumpy ride and some relief from the anxiety of the day to day symptom management as things improve.

 

Hugs.

[Soror]

So happy for you, I hope that this treatment works wonders.

[Nemom]

So happy you have some answers and a plan in place.  Hope she is able to recover quickly.

 

Please keep us updated on how treatment it going for her.  

[Pen]

Lyme and Mycoplasma for sure. He wants to check Bartonella, which we haven't tested for, and Babesia, which tested negative, too.  I don't think that she has Babesia because a main symptom there seems to be recurrent fevers, which she hasn't had at all. But Bartonella may be a factor.  The plan is to treat for two weeks with doxy, and then for two weeks with IV Cephtriaxone + IV Vit C, plus herbs, we started Meriva (curcumin) today, and we will add in other herbs in two weeks (many from Buhner - the cytokine herbs and others.) After that we'll move forward based on her response to the treatment and whatever symptoms are most troubling. Adaptive management, which makes sense to me as an ecologist. We're also shifting to an antiinflammatory diet and, as pain subsides (hopefully) starting to do some gentle exercise. After we've knocked down the infection we will work on rebuilding collagen structures. He wants to starve the beast at this point, rather than feed it, his philosophy is a little bit different from Buhner's in that respect, but I can live with it, he makes a reasonable case for this approach.

 

He also wants to do some more testing for lupus, given the family history and some observations he made during the physical exam. That could be autoimmunity caused by the Lyme, or it could be a genetic predisposition to autoimmunity that the Lyme caused to flare. He's also fairly certain that she has celiac's or some form of wheat/gluten allergy, but rather than pay out of pocket for extensive testing at this point, we're just removing it entirely from our diet, which isn't a challenge because I'm GF. 

 

He is also concerned about Rocky Mountain Spotted Fever because we spent a week camping in Wyoming a few years back. I haven't really researched that at all yet, so I don't have a current opinion. 

 

 

Well, despite the concern about the Wyoming trip, which was 3 years ago, he actually thinks that it's from a recent exposure. She was camping in a known Lyme area right before she got sick, and he thinks that is most likely when she got it. Which would be good, because it's a relatively recent exposure, compared to the tick bite when she was 3. But we will probably never know for sure. I think he's basing that assumption on the fact that her IgM was highly, conclusively positive for Lyme while her IgG was borderline. I've read conflicting things about the significance of IgM vs. IgG in Lyme, so I"m agnostic about that at this point.

 

 

My reactions to above. Read or skip as you like.

 

That all generally sounds good forward plan to me.

 

I had doxy (and other antibiotics) and  IV Vit C. Didn't have Cephtriaxone, or any pharmaceutical antibiotic IV, but that person I mentioned who did get really all well, not just improved, may have as part of his Lyme protocol.  He definitely had some antibiotic IV at credited his full recovery to that.

 

I try to keep up with keeping high levels of Vit C and some of the Bs, and others, and know that they make a difference in my own case--else I'd be bedridden, maybe dead.

 

A bit of concern on my part about Doxy making Lyme go into hiding, rather than gone, probably the doc knows that the follow up will deal with that.  

 

Not sure about starving the beast vs feeding it, and can't recall anything about that in Buhner.  "Starving the beast" as I read the words sounds reasonable offhand as long as healthy tissues are not being starved.

 

Be ready for possible Herx reactions.

 

I have autoimmunity issues which similarly could be from Lyme, or from other causes, or more than one thing. An acquaintance of mine with very similar symptoms to what I have had, and what you have reported for ds1, was dx'ed with Lupus, given Lupus medicines and died--I mean right away, not like after years of Lupus he died.  I therefore decided that for myself I was going to stay away from conventional Lupus etc. treatment.  

 

Anyway, myself, I'm wary of any medication or herb that is supposed to potentially flare up Lupus or other autoimmunity--astragalus, for example, alfalfa sprouts for another, which is tough as it is my ds's favorite sprout.

 

I think a number of markers for Lupus such as ANA can be elevated due to spirochetes like for syphilis and Lyme. Sort of a mixture of false positives in a sense, and the actuality that the spirochetes can be what starts up actual autoimmunity.  In any case, symptoms overlap. And at least when it comes to natural remedies most of them (excepting things like maybe astragalus), can work on more than just one thing.  Like Vit C which has collagen supportive as well as antiviral and antibacterial properties, as I believe. And hoping that won't start off an anti Vit C tangent.

 

As well as Lyme (or other virus) being able to set autoimmunity off, a toxicologist my mother talked to when I was first extremely sick thought it was caused by things like formaldehyde (from carpets, pressed wood etc.) molecules which then attach themselves to ones own tissues causing the immune system to attack itself as foreign.  That might be only one of many possible causes, but he was quite sure that for some cases it was the cause or the predominant cause. As an ecologist, that might interest you.

 

Oh, and while I suggest taking a year off from home school, if and when S feels able--without stress, if from time to time she can review what she has already done in subjects like math and foreign language, that could help her to move on when she is ready to move on--not to have forgotten what was already learned.

 

 

All the best to all of you on the road to recovery!!!!  May she be much better soon, and all well by this time next year!!!  

[Chrysalis Academy]

Pen, (or others), what have you found most helpful for herxing? I'm trying not to assume that it will happen, but I want to be prepared for it. I hear about using Alka-Seltzer gold +lemon juice, and curcurmin (which is part of why he wanted her to start that right away), Green Tea extract, and NAC & ALA. Anybody have any magic elixir for herxing?

Edited September 8, 2017 by Chrysalis Academy

[Spryte]

Pen, (or others), what have your found most helpful for herxing? I'm trying not to assume that it will happen, but I want to be prepared for it. I hear about using Alka-Seltzer gold +lemon juice, and cucurmin (which is part of why he wanted her to start that right away), Green Tea extract, and NAC & ALA. Anybody have any magic elixir for herxing?

 

 

Epsom salt baths, lemon water, stay very hydrated.  Becoming dehydrated is a problem, and will make things much worse.  The others you listed are helpful, too.

 

For me, personally, I don't detox well (due to genetic mutations) so addressing the causes of that was helpful - that is personalized, based on genetic testing my LLMD did, so it wouldn't be one size fits all.  We did not find that info till I'd been in treatment for years, so it would have been nice earlier, but I don't know how helpful it might have been.

 

Discuss herxing with your LLMD.  S/he will have helpful advice.  When things were too intense, I had to back off, per LLMD's advice.  I was extremely ill though, and my doc took the tack that I had to have some quality of life.  She did a lot to alleviate what she could, but she also said that I simply had to have permission to be sick - that there would be days I would just be sick.  That was her take, talking me through parenting a baby/toddler while extremely ill.  Honestly, had my mother and MIL not traded off living with us every 6 weeks for about 2 years, I'm not sure what we'd have done.

[StephanieZ]

Pen, (or others), what have your found most helpful for herxing? I'm trying not to assume that it will happen, but I want to be prepared for it. I hear about using Alka-Seltzer gold +lemon juice, and cucurmin (which is part of why he wanted her to start that right away), Green Tea extract, and NAC & ALA. Anybody have any magic elixir for herxing?

 

I find Epsom salt baths very soothing for Herx'ing. 

 

Also, my LLMD prescribes 4 herbal tinctures (parsley, burbur, pinella, and some "trace minerals" brain one. I take them erratically, but supposedly they help with Herx'ing, so when I'm worse, I take them several times a day.

 

And, just being able to crash and sleep / watch Netflix (don't count on remembering what you watched, though) is very helpful. I'd have lost my ever loving mind if I got Lyme when my kids were little or if I had to work . . . Treat it like a bad case of the flu . . . (mine so far haven't lasted more than a couple days, so they seem easy and nothing compared to the hell I lived with before getting the Lyme diagnosed).

[Nemom]

I took epsom salt baths every night and drank a lot of lemon water.  Swimming in chlorinated water and saunas were also very helpful for the herxing.  

Edited September 8, 2017 by Nemom

[Chrysalis Academy]

We had our phone consult with the Kaiser Pediatric Infectious Disease specialist this morning - that's been on the calendar awhile. Unsurprisingly, she says it can't be Lyme because the IgM is only relevant in the first 30 days. So we will be getting no help from Kaiser in treating dd's Lyme, we are on our own. I'm not getting derailed by this, I'm feeling rather eyerolly about it - I get where she is coming from, and what she said is consistent with her and her HMO's position on Lyme. and the CDC and IDSA position. So I don't fault her, but it's frustrating, because it's a worldview that denies a whole heap of contrary evidence. I've spent enough time combing that evidence to feel confident we are doing the right thing, but frustrated that we have to do it on our own. Our relationship with Kaiser will definitely be ending, but unfortunately we are stuck with them till next June 30. So our treatment costs will all be out of pocket, which sucks. But there it is.

Edited September 8, 2017 by Chrysalis Academy

[Spryte]

We had our phone consult with the Kaiser Pediatric Infectious Disease specialist this morning - that's been on the calendar awhile. Unsurprisingly, she says it can't be Lyme because the IgM is only relevant in the first 30 days. So we will be getting no help from Kaiser in treating dd's Lyme, we are on our own. I'm not getting derailed by this, I'm feeling rather eyerolly about it - I get where she is coming from, and what she said is consistent with her and her HMO's position on Lyme. and the CDC and IDSA position. So I don't fault her, but it's frustrating, because it's a worldview that denies a whole heap of contrary evidence. I've spent enough time combing that evidence to feel confident we are doing the right thing, but frustrated that we have to do it on our own. Our relationship with Kaiser will definitely be ending, but unfortunately we are stuck with them till next June 30. So our treatment costs will all be out of pocket, which sucks. But there it is.

I'm sorry. But not surprised. And ... frustrated with you. We were on our own, too.

 

I'm glad your DD will be getting the help she needs, though, and that she has you in her corner, that you've done the research and have found the way forward.

[idnib]

I've been traveling but I've been thinking of you guys and I'm relieved to hear your update!

 

Sorry about Kaiser. We may have to leave them too because of similar issues with them not acknowledging reality.

 

:grouphug:  :grouphug:  :grouphug:

[Pen]

We had our phone consult with the Kaiser Pediatric Infectious Disease specialist this morning - that's been on the calendar awhile. Unsurprisingly, she says it can't be Lyme because the IgM is only relevant in the first 30 days. So we will be getting no help from Kaiser in treating dd's Lyme, we are on our own. I'm not getting derailed by this, I'm feeling rather eyerolly about it - I get where she is coming from, and what she said is consistent with her and her HMO's position on Lyme. and the CDC and IDSA position. So I don't fault her, but it's frustrating, because it's a worldview that denies a whole heap of contrary evidence. I've spent enough time combing that evidence to feel confident we are doing the right thing, but frustrated that we have to do it on our own. Our relationship with Kaiser will definitely be ending, but unfortunately we are stuck with them till next June 30. So our treatment costs will all be out of pocket, which sucks. But there it is.

 

 

Do you have in mind a medical plan to switch to that will be better?  I'd think most companies can use the same justification to avoid coverage.

[Chrysalis Academy]

Do you have in mind a medical plan to switch to that will be better?  I'd think most companies can use the same justification to avoid coverage.

 

Not specifically. I'm thinking of getting a high-deductible plan and opening an HSA, so that we can at least have all this out-of-pocket stuff paid for out of pre-tax $$, but I haven't really investigated it too deeply yet, since we can't make a change till next summer.  The LLND is expensive, the supplements and even the food are expensive. The doxy is pretty cheap but I'm kind of afraid to even ask what IV Rocephin would set us back.

 

Wish us luck, guys. Doxy starts today. We have a really good supportive supplement-and-herb protocol already in place, with some interventions on hand in case of herxing. I'm hoping she does ok with the abx, but I'm pretty nervous. She had horrific joint pain in her hip on Sunday night keeping her awake for hours, and Monday and Tuesday were pretty rough. But Wednesday was the best day she's had in a really long time. I'm hoping that's the first of many good days, but must remind myself that progress is not linear.

[Zoo Keeper]

:grouphug:  and prayers as you start this part of the process. :grouphug:

[Pen]

If total family medical costs go over a certain percentage of your income and you itemize, you may be able to take a medical expense deduction which could help a bit.

Edited September 14, 2017 by Pen

[Kareni]

Sending good thoughts as Shannon starts this new regime.

 

Regards,

Kareni

[prairiewindmomma]

Rose--one of the things we did to keep costs down during my ^dd's^ chemotherapy was to get a picc line, and later a port. We were trained to inject some medications and flush the line at home in between visits.  Rocephin is cheap enough in pill form that I'm guessing you can order it from Costco pharmacy's catalog or from a home infusion service at a pretty decent price.  

[Pen]

I found this thread to link it on someone else's thread asking about Lyme.  

 

And so will take this moment to ask how dd is doing?

 

And how you and everyone else are doing?

[Reefgazer]

I'm glad you have some answers, finally.  I hope you can find treatment that is effective.  Good luck in taming the Lyme beast.

And . . . we have a diagnosis. Lyme disease, unequivocally.

 

I'm strangely euphoric - after a year of not knowing what was wrong and having no plan to fix it, I'm actually happy to have a dx and a plan for treatment. And a doctor we trust.

 

[Chrysalis Academy]

I found this thread to link it on someone else's thread asking about Lyme.  

 

And so will take this moment to ask how dd is doing?

 

And how you and everyone else are doing?

 

Thanks for asking, Pen. it's hard to answer. She completed 14 days of doxy. It didn't make her much better - she had a few good days, but some bad days too - but she also doesn't seem to be getting worse, which is a relief. I feel like it put a floor beneath the slide. We're working on getting the Buhner herbal protocol up to speed, adding a new herb every 3 days. So far she has tolerated all the herbs just fine, which is good. She's also on a whole slew of supplements, from curcumin and bromelain for pain and inflammation to NAC & ALA as antioxidants to Tryptophan for neuro issues. She's also started a melatonin+theanin+5hTP product at night, and it is helping her sleep better. And eating a strict diet, which has been the hardest part so far! No sugar, no dairy, no gluten or grains of course, but as low on carbs altogether as possible. Lots of vegetables and healthy fats and grass-fed meat. 

 

We see our Lyme ND next Monday at which point we decide whether to jump right in with IV Rocephin or whether to hold off and see how the herbal protocol is working. I'm not sure which way we'll go on that. It's hard to plan more than a day or two ahead. The doxy didn't make her gut symptoms any worse, thank goodness, and the pain is somewhat better. The other day, she said, "I have a bad headache." And I was like - that is so cool! For a year now you have just had a headache every single day, as a matter of course, so it was hardly worth mentioning. She realized, yeah, that's true, she doesn't automatically have a headache all the time. That's huge. And I feel like the pain in her joints isn't quite as bad.

 

Her POTS symptoms are really bad still though. We are going to the POTS clinic on Oct. 19 and we may need Florinef or something to try and get those symptoms under control. Or they may clear up as we get the Lyme under control. It's hard to plan ahead.

 

The biggest thing on my mind now is trying to get her to move. It's so hard, because she feels crappy and she's badly deconditioned. We got an exercise protocol for people who have been bedridden, things she can do lying down, isometrics mostly. But it's still a struggle for me to get her to do that even, and I have to constantly push on that. She seems to understand intellectually that she needs to "exercise" every day but is not at all motivated to do so because of feeling so fatigued and otherwise crappy.

 

She's also struggling with accepting that she "just" has Lyme. The last few days she has been looking up other obscure conditions that she might have on top of the Lyme. This is because she has really lost all trust and confidence in the medical system, and she's really worried that they are missing something big. This is not characteristic of her - she's not a worrier normally, or prone to anxiety. I almost wonder if it is a neuropsych manifestation of the Lyme itself?  I try to reassure her: We really have tested for everything else. She's definitely negative for Lupus, her liver, kidney etc. functions are all fine, her bloodwork is good, we've even gotten her ferritin up to the normal range. Kaiser may suck at treating chronic illness, but it's pretty good at diagnosing cancer and stuff, so I really don't think we're missing anything like that. But she's worried and anxious about it. 

 

Plus, she misses her life, so she struggles with sadness about that. As do I.

 

I'm hanging in there. I've had some major struggles with dd11 , who is in the midst of dramatic puberty hormonal fluctuations as well as stressed about her sister's illness. There's another whole thread about that on the General board. Other than that, I'm trying to just focus on Shannon's health/cooking healthy/family stuff/ and doing the minimum amount of work I can get away with, but enough to hopefully afford all this out of pocket medical stuff. That hasn't gotten critical yet, but it could do so soon. So that's stressful.

 

It's funny, I look back on my pre-illness life and think about how I used to feel stressed out & overwhelmed. What I wouldn't give to go back to *that* level of stress again!! It does show you that you can handle more than you think. And it helps you put things in perspective and focus on what's important.

[Carol in Cal.]

Not specifically. I'm thinking of getting a high-deductible plan and opening an HSA, so that we can at least have all this out-of-pocket stuff paid for out of pre-tax $$, but I haven't really investigated it too deeply yet, since we can't make a change till next summer.  

I don't think you can use the HSA for expenses that are over the counter anymore.

So you have to get someone to prescribe your stuff, and send in the prescription with the expense receipts.  (I ran into this when I had to use some very expensive OTC eyedrops for a chronic condition--I could only get this reimbursed from my HSA if they had be recently prescribed, not ongoing.)

[JoJosMom]

Thanks for asking, Pen. it's hard to answer. She completed 14 days of doxy. It didn't make her much better - she had a few good days, but some bad days too - but she also doesn't seem to be getting worse, which is a relief. I feel like it put a floor beneath the slide. We're working on getting the Buhner herbal protocol up to speed, adding a new herb every 3 days. So far she has tolerated all the herbs just fine, which is good. She's also on a whole slew of supplements, from curcumin and bromelain for pain and inflammation to NAC & ALA as antioxidants to Tryptophan for neuro issues. She's also started a melatonin+theanin+5hTP product at night, and it is helping her sleep better. And eating a strict diet, which has been the hardest part so far! No sugar, no dairy, no gluten or grains of course, but as low on carbs altogether as possible. Lots of vegetables and healthy fats and grass-fed meat. 

 

We see our Lyme ND next Monday at which point we decide whether to jump right in with IV Rocephin or whether to hold off and see how the herbal protocol is working. I'm not sure which way we'll go on that. It's hard to plan more than a day or two ahead. The doxy didn't make her gut symptoms any worse, thank goodness, and the pain is somewhat better. The other day, she said, "I have a bad headache." And I was like - that is so cool! For a year now you have just had a headache every single day, as a matter of course, so it was hardly worth mentioning. She realized, yeah, that's true, she doesn't automatically have a headache all the time. That's huge. And I feel like the pain in her joints isn't quite as bad.

 

Her POTS symptoms are really bad still though. We are going to the POTS clinic on Oct. 19 and we may need Florinef or something to try and get those symptoms under control. Or they may clear up as we get the Lyme under control. It's hard to plan ahead.

 

The biggest thing on my mind now is trying to get her to move. It's so hard, because she feels crappy and she's badly deconditioned. We got an exercise protocol for people who have been bedridden, things she can do lying down, isometrics mostly. But it's still a struggle for me to get her to do that even, and I have to constantly push on that. She seems to understand intellectually that she needs to "exercise" every day but is not at all motivated to do so because of feeling so fatigued and otherwise crappy.

 

She's also struggling with accepting that she "just" has Lyme. The last few days she has been looking up other obscure conditions that she might have on top of the Lyme. This is because she has really lost all trust and confidence in the medical system, and she's really worried that they are missing something big. This is not characteristic of her - she's not a worrier normally, or prone to anxiety. I almost wonder if it is a neuropsych manifestation of the Lyme itself?  I try to reassure her: We really have tested for everything else. She's definitely negative for Lupus, her liver, kidney etc. functions are all fine, her bloodwork is good, we've even gotten her ferritin up to the normal range. Kaiser may suck at treating chronic illness, but it's pretty good at diagnosing cancer and stuff, so I really don't think we're missing anything like that. But she's worried and anxious about it. 

 

Plus, she misses her life, so she struggles with sadness about that. As do I.

 

I'm hanging in there. I've had some major struggles with dd11 , who is in the midst of dramatic puberty hormonal fluctuations as well as stressed about her sister's illness. There's another whole thread about that on the General board. Other than that, I'm trying to just focus on Shannon's health/cooking healthy/family stuff/ and doing the minimum amount of work I can get away with, but enough to hopefully afford all this out of pocket medical stuff. That hasn't gotten critical yet, but it could do so soon. So that's stressful.

 

It's funny, I look back on my pre-illness life and think about how I used to feel stressed out & overwhelmed. What I wouldn't give to go back to *that* level of stress again!! It does show you that you can handle more than you think. And it helps you put things in perspective and focus on what's important.

 

 

 

Many, many hugs for you both.  I've been praying for both of you (and for your family.)

 

Edited October 2, 2017 by JoJosMom

[Pen]

Thanks for asking, Pen. it's hard to answer. She completed

1) 14 days of doxy. It didn't make her much better - she had a few good days, but some bad days too - but she also doesn't seem to be getting worse, which is a relief. I feel like it put a floor beneath the slide. We're working on getting the Buhner herbal protocol up to speed, adding a new herb every 3 days. So far she has tolerated all the herbs just fine, which is good. She's also on a whole slew of supplements, from curcumin and bromelain for pain and inflammation to

2) NAC & ALA as antioxidants to Tryptophan for neuro issues. She's also started a melatonin+theanin+5hTP product at night, and it is helping her sleep better.

3) And eating a strict diet, which has been the hardest part so far! No sugar, no dairy, no gluten or grains of course, but as low on carbs altogether as possible. Lots of vegetables and healthy fats and grass-fed meat. 

 

We see our Lyme ND next Monday at which point we decide whether to jump right in with IV Rocephin or whether to hold off and see how the herbal protocol is working. I'm not sure which way we'll go on that. It's hard to plan more than a day or two ahead. The doxy didn't make her gut symptoms any worse, thank goodness, and the pain is somewhat better. The other day, she said, "I have a bad headache." And I was like - that is so cool! For a year now you have just had a headache every single day, as a matter of course, so it was hardly worth mentioning. She realized, yeah, that's true, she doesn't automatically have a headache all the time. That's huge. And I feel like the pain in her joints isn't quite as bad.

 

Her

4) POTS symptoms are really bad still though. We are going to the POTS clinic on Oct. 19 and we may need Florinef or something to try and get those symptoms under control. Or they may clear up as we get the Lyme under control. It's hard to plan ahead.

 

5) The biggest thing on my mind now is trying to get her to move. It's so hard, because she feels crappy and she's badly deconditioned. We got an exercise protocol for people who have been bedridden, things she can do lying down, isometrics mostly. But it's still a struggle for me to get her to do that even, and I have to constantly push on that. She seems to understand intellectually that she needs to "exercise" every day but is not at all motivated to do so because of feeling so fatigued and otherwise crappy.

 

6) She's also struggling with accepting that she "just" has Lyme. The last few days she has been looking up other obscure conditions that she might have on top of the Lyme. This is because she has really lost all trust and confidence in the medical system, and she's really worried that they are missing something big. This is not characteristic of her - she's not a worrier normally, or prone to anxiety. I almost wonder if it is a neuropsych manifestation of the Lyme itself?  I try to reassure her: We really have tested for everything else. She's definitely negative for Lupus, her liver, kidney etc. functions are all fine, her bloodwork is good, we've even gotten her ferritin up to the normal range. Kaiser may suck at treating chronic illness, but it's pretty good at diagnosing cancer and stuff, so I really don't think we're missing anything like that. But she's worried and anxious about it. 

 

Plus, she misses her life, so she struggles with sadness about that. As do I.

 

7) I'm hanging in there. I've had some major struggles with dd11 , who is in the midst of dramatic puberty hormonal fluctuations as well as stressed about her sister's illness. There's another whole thread about that on the General board. Other than that, I'm trying to just focus on Shannon's health/cooking healthy/family stuff/ and doing the minimum amount of work I can get away with, but enough to hopefully afford all this out of pocket medical stuff. That hasn't gotten critical yet, but it could do so soon. So that's stressful.

 

It's funny, I look back on my pre-illness life and think about how I used to feel stressed out & overwhelmed. What I wouldn't give to go back to *that* level of stress again!! It does show you that you can handle more than you think.

 

8) And it helps you put things in perspective and focus on what's important.

 

 

comments on things with numbers above--take all to be "IME" or "as I understand it" type comments:

1) It didn't for me either.  I think it might have sent the Lyme into hiding.  But then the herbals or IV should hopefully get at hidden Lyme, without it actively doing yet more damage to tissues.

 

2) out of curiosity does her NAC smell... I dunno, like dirty socks or something?  I'm not sure if I have a weird reaction to NAC or if it really does stink.

 

3) diet is really really hard--I commiserate with both of you-- but also may be large part of decline of joint pain and headaches.

 

4) I've never taken Rx for POTS--other than vitamins and salt increase, IME it comes and goes...  likely to improve as other things improve and vice versa   I also have tachycardia problem related to various toxic chemicals. So that swimming could be easiest exercise for me in terms of being able to do it lying down, but I can neither handle the chlorine of a pool, nor the cold of natural water (due to Raynauds) where we are.  Fragrance products and other things cause me to get POTS type symptoms and also terrible headaches, joint pain, etc.   Mentioning that in case it could affect her too. 

 

5) my probably Lyme became autoimmunity plus CFS and some permanent joint and other damage.  

 

As with not pushing schoolwork while trying to heal from Lyme, personally I'd also not push hard right now on exercise.  Beat the spirochete and heal first, gain back strength after.

 

 I assume you are being told otherwise by her docs or PTs, but my btdt experience is that pushing may create worse long term issues.  I would personally, or if she were myself in retrospect with chance to do it again differently than I did, not stop her from doing what she feels she can, but not push beyond that.  In these first months.   

 

6) remind her that Lyme can imitate other things. She could have something else, but Lyme alone can explain everything she has.

 

There is probably not anything that she has other than Lyme and its cohort that needs to be addressed now even if it were to turn out that there is something else.  And yes, the Lyme itself could be making her have anxiety. So could dietary changes or her medicines.  Also I think that POTS feelings go with anxiety.  Missing regular life is normal.  And sad is normal.  But should alleviate as  she gets better, but the getting better is a marathon, not a short sprint.  

 

Mentally dispute thoughts that lead to anxiety and depression if possible since they are likely to make things worse.  Funny audio books, movies, etc. could be helpful.  Fresh air, sunshine. A pet to pet. 

 

7) I'm glad you are hanging in there. I missed the posts on dd#2

 

8) So true!

[Chrysalis Academy]

Yep, the NAC does smell like dirty socks! Almost as bad as valerian.

 

Yes, her POTS comes and goes too. And yes, she is ultra sensitive to scents - she has a mask she wears when she leaves the house because almost any strong smell can trigger a migraine. And yes, the chlorine in the pool really affects her, so swimming hasn't really worked for exercise here either.

 

Ok, yes, I can hear what you are saying about exercise. And yes, I am being pressured to push her to exercise. The part of me that buys it is the part that thinks that if she never does anything, she never will be able to do anything, so I want her to start with something, even if it is just squeezing her muscles together while lying in bed. But I get how easy it is to overdo it with exercise. And that exercise is not the magic answer all by itself - a good article on that for CFS/fibro just got published recently. I feel like it's another way to blame patients for their illness - "You'd be fine if you'd just exercise. What, you aren't exercising? Then no wonder you feel bad! There's nothing I can do to help you if you won't help yourself."  It's pretty sick. So thank you for that reminder based on your own experience. It is valuable to me.

 

You are so right, it is a marathon not a sprint. And progress is not linear.

[wapiti]

NAC is a form of sulfur, so a sulfur smell would not be surprising.  However, my current bottle of capsules does not smell.  IIRC, the tablet version might have a smell.  There is a smell with the PharmaNAC drink but I can't remember what it is.

[Pen]

Yep, the NAC does smell like dirty socks! Almost as bad as valerian.

 

Yes, her POTS comes and goes too. And yes, she is ultra sensitive to scents - she has a mask she wears when she leaves the house because almost any strong smell can trigger a migraine. And yes, the chlorine in the pool really affects her, so swimming hasn't really worked for exercise here either.

 

Ok, yes, I can hear what you are saying about exercise. And yes, I am being pressured to push her to exercise. The part of me that buys it is the part that thinks that if she never does anything, she never will be able to do anything, so I want her to start with something, even if it is just squeezing her muscles together while lying in bed. But I get how easy it is to overdo it with exercise. And that exercise is not the magic answer all by itself - a good article on that for CFS/fibro just got published recently. I feel like it's another way to blame patients for their illness - "You'd be fine if you'd just exercise. What, you aren't exercising? Then no wonder you feel bad! There's nothing I can do to help you if you won't help yourself."  It's pretty sick. So thank you for that reminder based on your own experience. It is valuable to me.

 

You are so right, it is a marathon not a sprint. And progress is not linear.

 

 

I think there are plenty of stories of people from back when who had to recuperate from something long lasting, and then went on to be outdoorsmen, or athletes, or at least basically active --   probably a lot more people, but they have to be relatively famous for it to get known       Jesse Owens. Teddy Roosevelt..  Alan Alda.  Bram Stoker. Isaac Newton. Scott Hamilton. Jack London?    

 

need some females. How about: Wilma Rudolph. Laura Ingalls Wilder.

[Jean in Newcastle]

Re exercise. I know how terribly hard it is to exercise when you feel so tired and achy. But I would encourage her to do the minimum exercises. I was at a semi invalid level for many years and my road back was much worse because I didn't exercise at all. Pain levels can be worse when you don't move at all.

 

 

Sent from my iPhone using Tapatalk

[Pen]

Unfortunately, I don't think there are any good studies done that have looked at large numbers of Lyme patients at different stages and had them do one or another specific exercise protocol (or none) for specified lengths of time, and then compared outcomes to see if OTOH on average it helped with recovery, or OTotherH, if on average it seemed to tip things over into CFS or permanent disability.

 

If anyone does know of any studies about exercise during Lyme, I'd be interested in link or reference.

 

 

 

 

 

I don't even know what S is actually doing or not doing daily.  I am assuming that dd1 IS moving some at least to go eat, toilet, spend a little time outside, etc., and is not just lying absolutely still in bed 24/7. 

 

 

Perhaps, since it is S's body, and also ultimately S's life, arguments pro and con should be given to her, and she should decide what to do, in part judging by how she personally feels--since exactly how the Lyme has attacked her / as well as how the protocols to get rid of it are working, will not be the exact same as for anyone else.

 

Does some exercise make her feel a bit better, reduce pain, etc.?  How much exercise is positive (it may not be consistent)? 

 

Or does it make her feel worse?

 

If worse, only worse at the moment she does it with good recovery?

 

Or is she already having some typical CFS-like problem of delayed negative effects of exercise?

 

 

 

 

 

 

[Pen]

Re exercise. I know how terribly hard it is to exercise when you feel so tired and achy. But I would encourage her to do the minimum exercises. I was at a semi invalid level for many years and my road back was much worse because I didn't exercise at all. Pain levels can be worse when you don't move at all.

 

 

Sent from my iPhone using Tapatalk

 

 

To clarify--I don't think Rose's dd1 should not exercise at all for years. And don't think she should not move at all now. 

 

My guess is that dd1 is only depressed secondary to being ill and will likely do what she is able to do as she is able to do it, and may even be likely to overdo rather than underdo because she wants so very much to get back on with her active life.  Though I am imposing my own feelings and tendencies onto dd1, I realize.

 

Unfortunately, I think she is a year or so into her condition due to not having had a correct diagnosis until recently and in that sense it already has a certain amount of "chronicity" aspect to it. But in terms of correctly approaching Lyme as they now know it to be, it seems to me that she is actually still in the dealing with an acute illness stage of recovery due to only figuring out what it is and an approach to it recently.  I'd guess that even with the abx taken,  there are still spirochetes around capable of doing more damage--more neuro attack,  cardio attack, collagen attack, etc.

 

I'm suggesting caution. Not pushing exercise yet. But not lying immobile in bed 24/7 either.  

 

Don't know what sort of outdoors Rose has, but if weather and yard permit, I would, if my dd, tend to push getting out of doors, at least some every day if possible, even if that were to go to rest in a recliner lounge or zero-gravity chair.  I think fresh air and sunshine are helpful, in general.

[Pen]

I tried a google of terms like Lyme, exercise, helpful, worse ...

 

 

 

edit/revision:  at first I posted a bunch of links that seemed at first glance at Google short blurb like they are contradictory.  When I actually looked inside they no longer seemed so contradictory.  I'll leave the top two links and erase the rest, but put a quote from the most strongly pro-exercise one, which nonetheless has some significant cautions on it.  

 

Copying seems to have made the numbered points from the original shift so it is no longer the same as the original was. I started with the number 3 point, but it autocorrected to make that number 1.

 

 

 

Exercising With Lyme Disease — Unravelling Complex Chronic Illness

www.gordonmedical.com/...illness/exercising-with-lyme-disease-2/

‎

 

May 27, 2011 ... "The point of this message is that aerobic exercise can temporarily deplete the immune system, which can make Lyme disease harder to treat."

 

 

 

 

 

Lyme Disease Exercise - ProHealth

www.prohealth.com/lyme/lyme-disease-exercise.cfm

‎

"

1. Aerobic exercises are NOT allowed - not even low-impact - until the patient has recovered.
    
2. Work to improve strength and reverse the poor conditioning that results from Lyme. 
    
3. Use a whole-body exercise program that includes calisthenics and/or resistance training using light resistance and many repetitions.
    
4. Each session should last one hour. Low intensity is preferable to a strenuous workout. If necessary decrease intensity so the patient can continue for the whole hour.
    
5. Never exercise two days in a row. Initially patients may need to start by exercising every 4th or 5th day and increase the frequency as they are able, but never more often than every other day. 
    
6. Non-exercise days should be spent resting.

...virtually all Lyme specialists agree on is that patients should start slowly and increase exercise incrementally. Pushing to the point of exhaustion, particularly when the exhaustion lasts for a day or more, is not beneficial. 

NOTE: Dysautonomia, a malfunction of the autonomic nervous system which regulates all automatic bodily functions such as heart rate, blood pressure, respiration, etc., can accompany or be triggered by Lyme disease. One of the symptoms of dysautonomia is exercise intolerance. If you have or suspect you have dysautonomia, be sure to discuss this with your doctor before beginning any exercise program. "

 

 

 

Hope this helps.  

 

 

Edited October 4, 2017 by Pen

[Chrysalis Academy]

Thanks, Pen. I have the full document that the second excerpt is from. All I can say at this point is that the idea of exercising for an hour is a joke. And non exercise days should be spent resting? Yeah, we got that covered . . . every day is spent resting. Sorry, I don't mean to be snarky but it just feels so out of touch for where S is at right now. Which is spending 5-10 minutes doing isometrics, laying down. On a good day. Yesterday she had such a bad cluster headache I didn't ask her to do anything. Some days are like that.

 

With POTS/dysautonomia, OTOH, the party line is that if you *don't* do a combo of aerobic exercise + muscle strengthening of the lower body, you absolutely will not get well. So yeah, I find the conflicting information challenging to deal with. At best.

[MerryAtHope]

Not specifically. I'm thinking of getting a high-deductible plan and opening an HSA, so that we can at least have all this out-of-pocket stuff paid for out of pre-tax $$, but I haven't really investigated it too deeply yet, since we can't make a change till next summer.  The LLND is expensive, the supplements and even the food are expensive. The doxy is pretty cheap but I'm kind of afraid to even ask what IV Rocephin would set us back.

 

Wish us luck, guys. Doxy starts today. We have a really good supportive supplement-and-herb protocol already in place, with some interventions on hand in case of herxing. I'm hoping she does ok with the abx, but I'm pretty nervous. She had horrific joint pain in her hip on Sunday night keeping her awake for hours, and Monday and Tuesday were pretty rough. But Wednesday was the best day she's had in a really long time. I'm hoping that's the first of many good days, but must remind myself that progress is not linear.

 

I don't know if it exists any more, but back when my dh did IV Rocephin (2000-2001), the company that manufactures it offered a patient assistance program to help out when insurance wouldn't cover it. We still had to cover all of the supplies and things like a PICC line and later a central line, but it made it doable. You might investigate whether that's a possibility any more. 

 

Hang in there and I hope your daughter finds healing and relief. Neuro-Lyme is really difficult to deal with, but I'm glad she has the strength/energy/will to research and see if that is really the best fit. 

[Chrysalis Academy]

I don't know if it exists any more, but back when my dh did IV Rocephin (2000-2001), the company that manufactures it offered a patient assistance program to help out when insurance wouldn't cover it. We still had to cover all of the supplies and things like a PICC line and later a central line, but it made it doable. You might investigate whether that's a possibility any more. 

 

Hang in there and I hope your daughter finds healing and relief. Neuro-Lyme is really difficult to deal with, but I'm glad she has the strength/energy/will to research and see if that is really the best fit. 

 

Thank you. She actually doesn't have the strength/energy/will to do research, much, that's mostly me. But she does post on Instagram about her chronic illness, and follows some other chronically ill folks, and gets some support that way. I guess that balances out all the horror stories that one can read online that kind of freak her out. It's hard, because she needs the connection, but not the freaking-out-ness.

 

It gives us a good opportunity to talk about evidence and conspiracy theories and belief and stuff like that, though, all making her a bit more media- savvy, so that's good.

[Pen]

Thanks, Pen. I have the full document that the second excerpt is from. All I can say at this point is that the idea of exercising for an hour is a joke. And non exercise days should be spent resting? Yeah, we got that covered . . . every day is spent resting. Sorry, I don't mean to be snarky but it just feels so out of touch for where S is at right now. Which is spending 5-10 minutes doing isometrics, laying down. On a good day. Yesterday she had such a bad cluster headache I didn't ask her to do anything. Some days are like that.

 

With POTS/dysautonomia, OTOH, the party line is that if you *don't* do a combo of aerobic exercise + muscle strengthening of the lower body, you absolutely will not get well. So yeah, I find the conflicting information challenging to deal with. At best.

 

 

I agree that one hour sounds like a joke.  But don't forget that this is a regimen for after recovery.  S has not reached recovery yet.  And even then, IME, she would have to work up to one hour, and the hour would have to be very, very minimal.

 

I ended up with CFS, so I have to follow CFS regimens, which is more like 5 minutes. On good days.

 

Not supposed to do any exercise with CFS unless feeling good doing nothing.  And a lot of days feeling good doing nothing is not the case.  Then again, as an adult, mom, etc. most days do have significant movement even if not any "exercise" per se.  I am concerned, from what you have described, that S is moving toward CFS herself.  If so, on CFS I recommend websites or book by Dr. Myhill (first name might be Sarah?)

 

I think in part you need to determine or if not determinable, make your best guess,  whether you think she has several different separate things, or one basic thing with different aspects to it.  

 

 

If the POTS is secondary to Lyme, and my guess is that it is secondary to Lyme in her case as in mine, then I think you follow Lyme protocol, because you want as much recovery from Lyme as possible as number 1 priority.

 

 

 

If you think she has EDS with POTS totally separate from Lyme, then, I have no idea what you do because I only know a bit about that sort of thing (EDS) in terms of ruling out other things for my own illness. I guess you would have to balance the two things and their contradictory needs as best you can.

 

 

Personally, I think POTS describes a situation--sort of like shortness of breath describes a situation.  For one person with shortness of breath,  exercise might be the best thing. But for another if they had, say, pneumonia causing it, exercise might not be the best thing and instead treating the pneumonia, and then after it is cured, rehab of gradually building up exercise tolerance and lung capacity would likely be better..