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

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#1 Chrysalis Academy

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Posted 13 August 2017 - 08:49 AM

I am really interested in hearing from anyone who has dealt with Lyme disease, especially chronic Lyme, or who has struggled with diagnosis and confusion around whether it's Lyme or something else. What else? 

 

Here is the story:

 

Dd has been chronically ill for a year now. It started with headaches, then added extreme fatigue, brain fog, trouble concentrating. Then added on orthostatic intolerance, tachycardia, air hunger. Then added on joint pain, both chronic and acute with exertion. Finally added on gut symptoms: gastroparesis, nausea, bloating. Her quality of life is in the toilet and she is getting worse.

 

First we were told - viral meningitis, she'll be fine in 6 weeks. Then we were told - migraines, take excedrin and do yoga. Then we were told it must be anxiety & depression (She's had a psych eval. It's not that). Now we're being suggested nothing new, we just get each idea we bring to the table shot down. It's been frustrating, to say the least.

 

We've kind of zeroed in on two possibilities: hypermobile Ehlers-Danlos Syndrome + POTS - but we have no known family history.

Or Lyme disease. She had a known Lyme exposure at age 3, but never had acute Lyme. So if it is Lyme it is chronic, of long duration.

 

We are now working with a naturopath who is helping us look for answers and will help with symptoms while we search for a diagnosis.

 

Dd has had chest x-ray, an EKG, and lots of blood work, all normal.  Here are her only positive results:

 

Ferritin - extremely low, even with iron supplementation

Mycoplasma pneumoniae - positive

Lyme - Equivocal.  Officially equivocal, which is so frustrating She had a negative result on Kaiser's Lyme screen - EIA. We had a Western Blot done through IgeneX and she has a positive IgM and an equivocal igG. This would indicate a recent exposure, potentially, so doesn't seem to fit with the symptom duration. 

Babesia test was negative.

 

So I'm not sure what to make of this. Her symptoms are consistent with chronic Lyme. Mycoplasma is a common co-infection, apparently. But if she is sick with Lyme it's not a recent exposure. Does anyone have any thoughts or insight to offer? What questions should I be asking? Resources? Articles I can read? Anything?

 

Thanks in advance.  :)


Edited by Chrysalis Academy, 06 September 2017 - 07:58 PM.

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#2 okbud

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Posted 13 August 2017 - 09:17 AM

I guess my question would be... If you went ahead and treated it as if it were Lyme, would that aggrivate the condition if it were actually Ehlers-Danlos?

 

Because if not, I'd get with a pediatric infectious disease specialist, and treat it like lyme.


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#3 Chrysalis Academy

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Posted 13 August 2017 - 09:32 AM

I guess my question would be... If you went ahead and treated it as if it were Lyme, would that aggrivate the condition if it were actually Ehlers-Danlos?

 

Because if not, I'd get with a pediatric infectious disease specialist, and treat it like lyme.

 

Yes, that may be the answer. However, there are a couple of wrinkles. There are some antibiotics that are contraindicated in EDS because of their effect on connective tissues. So if it were EDS and not Lyme the wrong antibiotic could make things worse. Clearly, we need someone who is very knowledgeable to guide us in that decision.

 

Also, dd is allergic to amoxicillin. We found this out when the ped prescribed it as a prophylactic after her Lyme exposure at 3. She quickly developed a horrific rash, head to toe. It was so frightening. I will confess to a lingering fear based on that experience. I know that doxy is a different class of antibiotic, so we can't assume that it will have a negative effect. But I admit that these two concerns - antibiotic allergy + antibiotic effect on connective tissue - make me hesitant to immediately demand antibiotics.

 

We're obviously going to need someone very specialized and knowledgeable to help us, but it's hard to know how to find that person. They don't seem to exist at Kaiser.


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#4 Kfamily

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Posted 13 August 2017 - 09:38 AM

I'm of no help, but I really wanted to just offer some hugs.  :grouphug:  :grouphug:

 

I really hope your daughter feels better as soon as possible. 


Edited by Kfamily, 13 August 2017 - 10:11 AM.

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#5 wapiti

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Posted 13 August 2017 - 09:48 AM

Rose, I'm so sorry to see that you are dealing with a mystery illness.  There is far too much of that going around.


Edited by wapiti, 13 August 2017 - 01:25 PM.

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#6 Pink and Green Mom

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Posted 13 August 2017 - 09:53 AM

:grouphug:.  I'm sorry you all are going through this. 

 


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#7 Jean in Newcastle

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Posted 13 August 2017 - 10:08 AM

I don't have Lyme and can't give you advice on that angle. I do have fibromyalgia and have had it going on 30 years now. I share a lot of your dd's symptoms. Fibro is primarily pain and fatigue but there are a whole mess of other symptoms.

A couple of years ago I was on antibiotics for six months straight for a severe sinus infection. I went through 8 classes of antibiotics because I would be ok and responding for a couple of weeks and then they would stop working and I would start to react to them instead. By the end I was reacting to all antibiotics. Not true allergies but my body just couldn't take it. Fortunately I responded to a combination of the last antibiotic and a painful treatment where I was snorting vinegar/saline/baby shampoo up my nose. The very next year I had to do it again because I got another severe infection in my throat this time. Ok- this is a long build up to say that I understand being on long term antibiotics. The reason I haven't had any infections since has been because I was put on low-dose naltrexone. They don't 100% know how it works but it is a immuno-regulator. It might be something to explore. Some people do take it for chronic Lyme disease.


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#8 wapiti

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Posted 13 August 2017 - 10:15 AM

Jean, how long have you been on the LDN?  Is it still working?


Edited by wapiti, 13 August 2017 - 01:26 PM.

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#9 wapiti

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Posted 13 August 2017 - 10:42 AM

Something interesting just turned up in one of my many (lol) FB groups on health stuff.  This might interest you:  http://www.rccxandillness.com, about overlapping syndromes associated with chronic illness


Edited by wapiti, 13 August 2017 - 01:26 PM.

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#10 Jean in Newcastle

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Posted 13 August 2017 - 11:03 AM

Jean, how long have you been on the LDN?  Is it still working?  It's fascinating but I have concerns.  We have already done a whole lot of IVIg and next up is PEX (plasma exchange) with IVIg, but I'm afraid to do it, especially if there are possible lingering infections.  It seems to me that LDN isn't more scary than PEX and is a whole lot cheaper.  (Also doing a compounded nasal spray that has baby shampoo, along with sinus rinse that has a gel antibiotic added - I suppose next step is to add the surfactant to the rinse because ENT says nasal spray doesn't get up high enough to touch the location of infection in sinuses)

 

I have been on LDN for over a year now.  It's funny because I started with a four month trial.  Towards the end of the trial I was going to tell the doctor to forget it because I didn't think it was working.  I didn't have any side effects (other than the first couple of days when I think that I had some minor ones) but it wasn't a magic bullet either.  I still have fibro.  But then what I call a God-thing (and some one else might call serendipity) happened.  I had a refill on the LDN and forgot to put the pills in my pill box.  I take about 20 meds a day so I didn't notice one less.  Oh my word.  I went into a really really bad pain flare.  Back to levels that I hadn't had in awhile.  After a couple of days of this I realized the med. mistake and went back on the LDN.  My flare got better within a day.  In my case, I still have daily pain but it isn't at the level I used to have where death was a release that I thought about seriously. 

 

I don't think that LDN necessarily works on active infections but it seems to help keep me from getting ill with every little thing.  And when I do succumb to a virus I don't end up in the ER like I used to.  (I don't really know about whether it works on active infections though so don't take my word for that.)

 

Re. the baby shampoo / vinegar / saline rinse thing.  The baby shampoo and vinegar were there to break down a bio film that some bacteria had as a defense.  It then allowed the antibiotic to get to the bacteria.  It was super painful though.  It would feel like my very brain was on fire for about a minute after every snort.  I also had antibiotics that were mixed into the rinse as a second step but I was on oral antibiotics at the same time.


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#11 Chrysalis Academy

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Posted 13 August 2017 - 11:25 AM

Rose, I'm so sorry to see that you are dealing with a mystery illness.  There is far too much of that going around.
 

ETA, on the antibiotic rash, was it hives or something else?  The immune system does weird things sometimes and I would wonder whether the rash was a result not of the medicine but the interaction between the medicine and a pathogen and the immune system.  (So much is not known that I'd love to throw up my hands but I can't.)

 

It wasn't hives. the doc said it was erythemia minor. No idea whether it was a reaction to the antibiotics or an interaction, as you say. In any event, I have to roll my eyes when I get asked if she had a bulls-eye rash. She was literally one big rash from head to toes.  The docs just assumed it was an amoxycillin allergy and put that in her medical record, so she hasn't been on it since. She did do a different antibiotic for a sinus infection once as a young child, but I don't remember which. That's the only time she's been on antibiotics. She was such a healthy kid . . . until she wasn't.

 

Something interesting just turned up in one of my many (lol) FB groups on health stuff.  This might interest you:  http://www.rccxandillness.com, about overlapping syndromes associated with chronic illness (EDS-HT, CFS, FM, LYME, MCAS, POTS, PAIN, PSYCHIATRIC SPECTRUM, IMMUNOLOGICAL, ENDOCRINE ISSUES).  I haven't read it yet, but just glancing at the first page, something jumped out:

 

(Such association has not gone unnoticed among PANS moms too, a seemingly larger than expected proportion of the kids are gifted, except that in PANS world, there seem to be more boys than girls.)

 

I haven't checked the genes yet with my kids' 23andme results and it may be that this website is not relevant, but I think it's useful to look at the big picture of overlapping symptoms.  Maybe some useful nugget might be there someplace.
 

ETA, I just noticed the gastroparesis and nausea symptoms - my dd was recently diagnosed with gastroparesis too.  We have a pretty cool ped GI who said gastroparesis now thought to be post-viral neuroinflammation, which is fascinating, but we have not explored that route and he didn't indicate wanting to test for anything there.  Dd is not entirely satisfied though has seen improvement with reglen and DFGF.

 

Well, that's all fascinating, I could easily spend hours inside that rabbit hole. 

 

I'd love to hear if the 23andme results address any of the genetic issues - I've been considering doing hers but haven't done yet.

 

Some of the psychological things - creativity, synesthesia, gender fluidity - I had never heard connected to the physical symptoms. That's fascinating.

 

Before the Lyme issue was raised, we were looking at that weird acronym soup cluster: hEDS, POTS, MCAS, IBS, CFS.  She has symptoms that fit all of those. The hypermobility is the one distinguishing characteristic. She's definitely hypermobile. But chronic Lyme can cause collagen disorders too. So it's hard to figure out how to get a differential diagnosis. But maybe it's all connected.

 

Really, the big question at the moment is whether antibiotics are indicated, or would do any good. Or at least do no harm.


Edited by Chrysalis Academy, 13 August 2017 - 11:26 AM.

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#12 Pen

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Posted 13 August 2017 - 11:48 AM

Yes. Me. And a few other people I know.

 

One person I know got late treatment for chronic lyme with lots and lots of antibiotic IV and actually got better, really, really better!  

 

But I and most people I know have not gotten better....   or not a lot better. And I should add that I also never got my antibiotics by IV which may have made the difference. But I've also had bad reactions to antibiotics and so try to avoid them now.  My recurrent fevers got better with oral antibiotic treatment, but other symptoms did not, or even got worse perhaps.  Most docs think since I did not get well with treatment for Lyme it was probably not Lyme, hence considered autoimmunity and CFS...but at least one thinks it is chronic Lyme, or is that in part. Keep in mind that it is possible for there to be more than one thing. Or for something to ignite more than one thing at the same time, or a sort of domino effect of from one thing to another.  Anyway, I  have been unwell chronically for over 20 years.  I think my mitochondria were killed / damaged, so I have been working on that.   

 

If you'd like to talk by phone let me know.


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#13 wapiti

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Posted 13 August 2017 - 11:48 AM

 


Edited by wapiti, 13 August 2017 - 01:27 PM.

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#14 CadenceSophia

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Posted 13 August 2017 - 12:39 PM

So many of the girls in my EGID group have all those symptoms, MCAS/MCAD and hypermobility also. I get most of them myself but not POTS. Have you tried allergy patch testing? Regimen of H1/H2 blockers? Both are pretty simple avenues to explore.
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#15 Chrysalis Academy

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Posted 13 August 2017 - 01:04 PM

So many of the girls in my EGID group have all those symptoms, MCAS/MCAD and hypermobility also. I get most of them myself but not POTS. Have you tried allergy patch testing? Regimen of H1/H2 blockers? Both are pretty simple avenues to explore.

 

Her antibody screen tests were negative, so Kaiser is resisting doing any additional allergy testing. We will pursue that through our naturopath - she has a thorough test that she likes that should screen for a large number of potential allergens. Celiacs is also a potential issue, as I and my dad both have it, but again they are refusing to order an endoscopy because of the negative result on the screening test. So frustrating that they rely on screening tests with a known high false negative rate and then use them to refuse further testing.

 

I haven't tried antihistamines or H1/H2 blockers yet. It's definitely on my radar, but because we are still trying to figure out what's wrong, I've been trying not to muddy the waters with medications until we have a clearer picture of what is going on. But it's definitely an option to consider, apparently it can help control EDS symptoms as well.



#16 wapiti

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Posted 13 August 2017 - 01:25 PM

Probably off-topic for your kiddo, but interestingly, histamine is also a neurotransmitter in the brain.  I could go on and on about that... (many kids like mine do well on antihistamines, especially ones that do not cross the BBB so much, though weirdly he is the opposite, does worse.)


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#17 idnib

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Posted 13 August 2017 - 01:43 PM

:grouphug:  :grouphug:  :grouphug:

 

I'm sorry you've not been able to find a path forward since we last spoke.


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#18 Pen

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Posted 13 August 2017 - 02:26 PM

If celiac runs in family, why not give a trial to no gluten etc.--maybe leave off some common food allergens at same time?  Seems like maybe that could help and would be unlikely to hurt?


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#19 RegGuheert

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Posted 13 August 2017 - 03:26 PM

Dd has been chronically ill for a year now. It started with headaches, then added extreme fatigue, brain fog, trouble concentrating. Then added on orthostatic intolerance, tachycardia, air hunger. Then added on joint pain, both chronic and acute with exertion. Finally added on gut symptoms: gastroparesis, nausea, bloating. Her quality of life is in the toilet and she is getting worse.

Your daughter's symptoms sound almost exactly like DS17 when he was in the throws of Lyme (when he was about 12).  If I am correct, her treatment will take some time.  Unfortunately, she should expect new or more extreme symptoms once treatment begins due to the Herxheimer response.

 

Where do you live?  Perhaps someone here can recommend an excellent Lyme-literate physician in your area.

 

:grouphug:

 

ETA:  I meant to add: MOST Western Blot tests for Lyme are "equivocal" because the two PRIMARY markers for Lyme were reserved for a possible vaccine which never materialized.  How's that for putting the patients' well-being ahead of profits?


Edited by RegGuheert, 13 August 2017 - 03:29 PM.

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#20 Chrysalis Academy

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Posted 13 August 2017 - 03:38 PM

Your daughter's symptoms sound almost exactly like DS17 when he was in the throws of Lyme (when he was about 12).  If I am correct, her treatment will take some time.  Unfortunately, she should expect new or more extreme symptoms once treatment begins due to the Herxheimer response.

 

Where do you live?  Perhaps someone here can recommend an excellent Lyme-literate physician in your area.

 

:grouphug:

 

ETA:  I meant to add: MOST Western Blot tests for Lyme are "equivocal" because the two PRIMARY markers for Lyme were reserved for a possible vaccine which never materialized.  How's that for putting the patients' well-being ahead of profits?

 

We are in Sonoma County, in northern CA.


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#21 CadenceSophia

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Posted 13 August 2017 - 04:19 PM

Her antibody screen tests were negative, so Kaiser is resisting doing any additional allergy testing. We will pursue that through our naturopath - she has a thorough test that she likes that should screen for a large number of potential allergens. Celiacs is also a potential issue, as I and my dad both have it, but again they are refusing to order an endoscopy because of the negative result on the screening test. So frustrating that they rely on screening tests with a known high false negative rate and then use them to refuse further testing.

 

I haven't tried antihistamines or H1/H2 blockers yet. It's definitely on my radar, but because we are still trying to figure out what's wrong, I've been trying not to muddy the waters with medications until we have a clearer picture of what is going on. But it's definitely an option to consider, apparently it can help control EDS symptoms as well.

ACK!  EGID doesn't have any factor that shows on a screening test.  Only possible method of dx is biopsies. I don't know much about natropaths -- patch testing isn't 'alternative', my real regular allergist does it.  I know a lot of people like the various screening tests and blood tests, but there is nothing like actually patch testing.  It is the only reliable way to diagnose what are sometimes called type 4 allergies. Even if the patch testing doesn't solve everything, it is very likely that at least one or more foods are contributing. 


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#22 RegGuheert

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Posted 13 August 2017 - 05:24 PM

We are in Sonoma County, in northern CA.

I'm sorry, but we are on the other side of the country.  I'll provide our son's Lyme doctor's contact information anyway since he has patients from around the world coming to him for Lyme treatment:

 

Dr. Joseph Jemsek

 

If you cannot find someone nearby, you at least might consider him for a detailed clinical diagnosis.

 

Best wishes for a speedy diagnosis and recovery for your daughter.

 

P.S.  There is one diagnostic item that you can easily try with your daughter that is quite indicative of neurological Lyme disease (attacking the brain stem).  We still use this with our son to observe how active his Lyme is.

 

Have her hold both her arms out straight in front of her with her hands hanging limply.  Then ask her to close her eyes and observe the behavior of her hands carefully.  If the Lyme is affecting her brain stem, you will observe her hands twitching at random intervals of a few seconds.  If you are not sure if her hand movement is "twitching" or "normal", you can have others do this and observe what their hands do and then compare.  Don't tell your daughter what you are looking for in advance.  Just ask her to do it and see whether her hands jump around.


Edited by RegGuheert, 13 August 2017 - 05:25 PM.

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#23 Chrysalis Academy

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Posted 13 August 2017 - 06:08 PM

I'm sorry, but we are on the other side of the country.  I'll provide our son's Lyme doctor's contact information anyway since he has patients from around the world coming to him for Lyme treatment:

 

Dr. Joseph Jemsek

 

If you cannot find someone nearby, you at least might consider him for a detailed clinical diagnosis.

 

Best wishes for a speedy diagnosis and recovery for your daughter.

 

P.S.  There is one diagnostic item that you can easily try with your daughter that is quite indicative of neurological Lyme disease (attacking the brain stem).  We still use this with our son to observe how active his Lyme is.

 

Have her hold both her arms out straight in front of her with her hands hanging limply.  Then ask her to close her eyes and observe the behavior of her hands carefully.  If the Lyme is affecting her brain stem, you will observe her hands twitching at random intervals of a few seconds.  If you are not sure if her hand movement is "twitching" or "normal", you can have others do this and observe what their hands do and then compare.  Don't tell your daughter what you are looking for in advance.  Just ask her to do it and see whether her hands jump around.

 

No twitching, but she did have a hard time holding her arms still.

 

Then I had dd11 do it, and she was twitching way more than dd14! So that's probably a negative result . . . 


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#24 RegGuheert

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Posted 13 August 2017 - 06:20 PM

No twitching, but she did have a hard time holding her arms still.

 

Then I had dd11 do it, and she was twitching way more than dd14! So that's probably a negative result . . . 

O.K.  It was worth a shot.  If that's not a negative result, it is at least "equivocal"! :p
 


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#25 RegGuheert

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Posted 13 August 2017 - 06:32 PM

I would like to leave you with this:  HOPE!

 

We had lost our wonderful son to Lyme for a season.  It has been an extremely hard road back for him, but after 18 months of treatment and another few years of hard school work, we feel he is fully here again.  He may still have Lyme spirochetes in him, but they no longer control him.  He is a kind-hearted young man with a full life ahead of him.  We are very blessed.

 

I hope an pray your daughter can fully recover from whatever ails her.  Please keep us informed how things are going through this difficult and unwelcome journey.


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#26 AlmostEmptyNest

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Posted 13 August 2017 - 10:46 PM

Hi, my daughter was diagnosed with Lyme six months ago. She has had many of the symptoms that your daughter has. POTS can be caused by Lyme - my daughter has it.

Others who are more experienced will chime in, but in the Lyme community the advice is to not go to an infectious disease doctor for treatment. Instead, find a Lyme literate doctor. You can get recommendations by contacting ILADS. Another place with lots of helpful people and information is the Healing Well forums.

You're not alone. We've been dealing with this for a shorter time than many, and are already seeing some positive changes in our daughter's condition. It's scary, but it gets better.
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#27 idnib

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Posted 14 August 2017 - 12:43 AM

Speaking of ILADS, the former president and current board member, Dr. Stricker, has a practice in SF.


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#28 Lizzie in Ma

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Posted 14 August 2017 - 05:54 AM

Regarding the positive IgM.  Chronic and acute Lyme will have IGM positive.  Really great article here

https://lymemd.blogs...ronic-lyme.html

 

Both my kids ended up with Lyme as well as Ehlers Danlos with associated POTS, mast cell issues etc.  It was problematic in that we had to determine which "leftover" lyme symptoms were actually EDS issues.  But there was no doubt they each had Chronic Lyme. Two years of alternating iv protocols for our oldest who was, by then, in a wheelchair from undiagnosed Lyme. (8 years).  Youngest we caught sooner and we used oral antibiotics and Buhner's protocol.  Both are now in remission from Lyme and coinfections.  The "leftover"/EDS issues remain.  mast cell issues for oldest, pots for youngest, plus chronic pain are something we are still trying to figure out, treatment wise. The EDS diagnosis came several years after the Lyme diagnosis. But really helped explain why certain things didn't get better with Lyme treatment.

 

LDN is fantastic.

 

Which, I know, doesn't help you much except for a shared experience. 


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#29 RegGuheert

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Posted 14 August 2017 - 07:01 AM

Regarding the positive IgM.  Chronic and acute Lyme will have IGM positive.  Really great article here

Thanks!  That is an excellent article.  Often it is just as important (perhaps more important?) to know what we DON'T know as what we do know in order to make appropriate treatment decisions.  This is particularly true with Lyme disease.

 

Unfortunately, I have dealt with more than a few doctors who believe that what they have read/learned is the gospel and that they are not to be questioned.  Those are the doctors that I can do without.

 

Here is one more link for OP to encourage treatment for Lyme and its coinfections as soon as possible:  Relying on a negative Lyme disease test can prove deadly.  I apologize if that article is disturbing to the OP, but I feel it is important to strongly dispel the myth that Lyme is not a deadly disease.  The fact that it is not deadly for all victims does not change this fact.


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#30 Chrysalis Academy

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Posted 14 August 2017 - 07:29 AM

Great, I'm going to dive into those articles now. A question for folks with Lyme experience: can you have Lyme but have totally normal bloodwork? Other than the ferritin, Dd's bloodwork has always been normal: CBC, WBC, RBC, Hgb, Hematocrit, Platelets, Lymphocites, all other measures of Iron & Iron binding capacity, Transferrin, Everything normal. If she has been fighting an infection, shouldn't something in her bloodwork show up as abnormal? 


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#31 RegGuheert

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Posted 14 August 2017 - 07:52 AM

Great, I'm going to dive into those articles now. A question for folks with Lyme experience: can you have Lyme but have totally normal bloodwork? Other than the ferritin, Dd's bloodwork has always been normal: CBC, WBC, RBC, Hgb, Hematocrit, Platelets, Lymphocites, all other measures of Iron & Iron binding capacity, Transferrin, Everything normal. If she has been fighting an infection, shouldn't something in her bloodwork show up as abnormal? 

Our son's Lyme doctor does NO bloodwork.  He diagnoses Lyme disease PURELY based on a clinical evaluation.  He agreed to write us a prescription for the IgeneX and a Western Blot tests only because we were curious to see what would come back.  FWIW those tests for our son, who had very similar symptoms to your daughter, were negative for the Western Blot and equivocal for the IgeneX test.

 

But of course you DO have positive indications in your daughter's bloodwork indicating Lyme disease.  From your OP

Lyme - Equivocal.  Officially equivocal, which is so frustrating She had a negative result on Kaiser's Lyme screen - EIA. We had a Western Blot done through IgeneX and she has a positive IgM and an equivocal igG.


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#32 Chrysalis Academy

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Posted 14 August 2017 - 07:59 AM

Right, but I was thinking of other indicators of the body fighting an infection, generically - like high WBC.  Or something!!! It's just so strange to me that a kid can be so sick and nothing abnormal show up on the standard bloodwork panel. We have had three sets of "full" blood tests run in the past year. After the second one, the doctor actually emailed me, "Blood tests normal. Yay!"  As if she's treating a set of lab results and not a sick child?  :cursing:

 

Sorry, it just gets to me sometimes. We are covered by Kaiser, which is a large HMO in the western US, and it's hard not to feel that its doctors are made to swear the oath, "First, do no tests."


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#33 RegGuheert

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Posted 14 August 2017 - 08:21 AM

Right, but I was thinking of other indicators of the body fighting an infection, generically - like high WBC.  Or something!!! It's just so strange to me that a kid can be so sick and nothing abnormal show up on the standard bloodwork panel. We have had three sets of "full" blood tests run in the past year. After the second one, the doctor actually emailed me, "Blood tests normal. Yay!"  As if she's treating a set of lab results and not a sick child?  :cursing:

And there is a couple in Poughkeepsie, NY, who lost their 17-year-old son four years ago because of exactly this type of thinking.  And he is one of many, many, many who have suffered and/or are suffering with this disease because of wrongheaded physicians who cling to tests which are not fit for purpose.

 

Sorry, it just gets to me sometimes. We are covered by Kaiser, which is a large HMO in the western US, and it's hard not to feel that its doctors are made to swear the oath, "First, do no tests."

It's very difficult to come to grips with the realities of this disease and how poorly our system of "health care" deals with it.  It wasn't until our daughter's college professor saw our son and suggested that we watch the excellent documentary Under Our Skin that we started to understand what was involved.  If you have not yet seen that documentary, then I recommend that you do that as soon as possible.  But preview it first before you watch it with your daughter.  Some of the stories in there are very disturbing.  I recommend the original version, since that is what we saw.  I don't know much about the second one, but some of the reviews were not great.

 

We paid cash, up front, for all of our son's Lyme treatment because the CDC does not recognize the existence of chronic Lyme disease.  I hate to think of what would have happened to him had we stayed within the flawed system that exists in this country.


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#34 Chrysalis Academy

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Posted 14 August 2017 - 10:07 AM

Ok, so apparently EDS & Lyme wouldn't necessarily be mutually exclusive diagnoses. Crap.


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#35 Penguin

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Posted 14 August 2017 - 11:22 AM

(snip)

 

We paid cash, up front, for all of our son's Lyme treatment because the CDC does not recognize the existence of chronic Lyme disease.  I hate to think of what would have happened to him had we stayed within the flawed system that exists in this country.

 

My own health has been compromised by a chronic dermatological condition that is not recognized by most dermatologists. It has been very frustrating to have to figure everything out with pretty much only my fellow sufferers to help me through. I am sorry to hear that chronic Lyme is not recognized by the CDC. Any idea why not?

--

 

  :grouphug:  to Rose and anyone else trying to figure this out.


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#36 JoJosMom

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Posted 14 August 2017 - 12:43 PM

Rose, I am so sorry that you and she are going through this.  Your mommy heart must be breaking.  :grouphug: :grouphug: :grouphug:


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#37 SarahW

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Posted 14 August 2017 - 01:09 PM

Right, but I was thinking of other indicators of the body fighting an infection, generically - like high WBC.  Or something!!! It's just so strange to me that a kid can be so sick and nothing abnormal show up on the standard bloodwork panel. We have had three sets of "full" blood tests run in the past year. After the second one, the doctor actually emailed me, "Blood tests normal. Yay!"  As if she's treating a set of lab results and not a sick child?  :cursing:

 

Sorry, it just gets to me sometimes. We are covered by Kaiser, which is a large HMO in the western US, and it's hard not to feel that its doctors are made to swear the oath, "First, do no tests."

 

 

I unequivocally contracted Lyme last fall, and have been having ongoing symptoms. I have had so much bloodwork done this past year I could feed Dracula.

 

I have borderline low ferritin and just below cutoff RBC, and everything else always checks out great. Great? I'm not doing great.

 

Blood tests can find some things, but they can't flag everything that could be going on in the body. So, like me and my nerve issues, nerves acting stupid has no effect on the blood, so blood results are useless there.

 

If the blood results are fine, then it's time to other, different, research. But that usually means seeing a specialist, and then convincing them to run the tests and so on.

 

It's a total pita.


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#38 Pen

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Posted 14 August 2017 - 03:03 PM

One thing I just noticed looking pack at your dd's lab tests is that there is positive for Mycoplasma.  That being the case, can that be treated since it would be a problem regardless of what else she may have and whether or not it is a co-infection of Lyme or other tick bite illness?  Mycoplasma itself can be a big problem as I recall.  And has she been given tests for any other likely tick vector illnesses? Does she have any other unusual exposures or history? 

 

Have you considered stepping out of your Kaiser situation and getting a work up for her somewhere?  Maybe UCSF medical school?  Esp. if maybe you could find an older doc with lots of experience who looks at the patient rather than just the paperwork.

 

And no, I don't necessarily think there is supposed to be any labwork amiss with Lyme or various other possible similar infections.  Esp not if it is a lurking chronic infection.

 

From personal experience, while trying to get this sorted out, and fixed as much as possible, I'd suggest her doing very, very little: even less than the little she probably thinks she can do -- not trying to do as much as she possibly can. One book I have on CFS says it tends to afflict people like myself, and probably this also applies to your dd, who tend to be major do-ers.  And whatever she has now, getting CFS could also happen if that is not already a part of it, or get worse if it is.


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#39 Pen

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Posted 14 August 2017 - 03:12 PM

Also, has she seen a rheumatologist?


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#40 Chrysalis Academy

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Posted 14 August 2017 - 03:15 PM

Pen, yes, I was shocked by the fact that the doctor essentially ignored the Mycoplasma result.  Here you have a very sick kid, with mostly normal blood test results (this was pre-Western blot), and she tests positive for one thing, and you ignore it. The doctor said it was a bacteria that causes pneumonia and Shannon has no pneumonia symptoms. So . . . it must not mean anything.  

 

I'm beginning to lose my faith in testing and test results.

 

We are stepping outside of Kaiser - using a nauropath who is going to hook us up with a Lyme-literate doctor. We see her tomorrow. Meanwhile, we are using Kaiser for referrals at this point - we have a video appointment with a geneticist on Friday and have a referral in to an Adolescent POTS clinic in SF as well. I feel like we need to use as many of their resources as we can so that we can save our out-of-pocket expenses for things they can't (or won't) cover - which could be sizable.


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#41 Chrysalis Academy

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Posted 14 August 2017 - 03:31 PM

Also, has she seen a rheumatologist?

 

Not yet, but they do have rheumatologists on staff at the POTS clinic we're being referred to, I think? That's definitely on my list. 


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#42 Pen

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Posted 14 August 2017 - 04:02 PM

One problem that may also happen for you in trying to find S help is that some of the issues start getting into very controversial territory both in and out of the medical community.  Mycoplasma can because it has been implicated in being a possible weaponized microbe and also possibly found in possible stuff dropping from jet / chem trails which most people on a site like this one don't tend to believe in.  A lot of docs won't even believe in the possibility of chronic Lyme or CFS etc..

 

 

Here is a quote for you on something to do with mycoplasma, which also has names of some researchers (controversial, no doubt) in that field [eta-I mean field of Lyme, mycoplasma (etc.) and chronic illness, don't know where geographically] in case you need to look beyond Kaiser and the obvious status quo.  I also heard that there is a new tick borne illness--cannot recall the name right now.  And again at present I think it is controversial.

 

"Dr. Garth Nicolson, President of The Institute for Molecular Medicine, and Joyce Riley of The American Gulf War Veterans Assoc., among others, feel that Gulf War Illness is spreading to the general public  and is being divided up into separate disease labels such as those listed above. Many patients with these disease labels are sending their blood to be tested at The Institute for Molecular Medicine and The Bowen Lab, are finding they are infected with mycoplasma and or the Lyme Disease organism.  The Bowen Lab specializes in testing for the cyst form of the Lyme organism and for Erlichiosis and Babesiosis (other tick-borne infections). Mycoplasma and the cyst form of the Lyme spirochete are being found in much of the chronic illness population.  Mycoplasma Fermentens Incognitus, one of the most common strains being isolated, is patented by the U.S. Army and Army pathologist Dr. Lo.  Lo,Shyh-Ching-Pathogenic mycoplasma - U.S. Patent 5,242,820 issued Sept.7 1993"


Edited by Pen, 14 August 2017 - 05:15 PM.

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#43 JoJosMom

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Posted 14 August 2017 - 05:12 PM

Pen, yes, I was shocked by the fact that the doctor essentially ignored the Mycoplasma result.  Here you have a very sick kid, with mostly normal blood test results (this was pre-Western blot), and she tests positive for one thing, and you ignore it. The doctor said it was a bacteria that causes pneumonia and Shannon has no pneumonia symptoms. So . . . it must not mean anything.  

 

I'm beginning to lose my faith in testing and test results.

 

We are stepping outside of Kaiser - using a nauropath who is going to hook us up with a Lyme-literate doctor. We see her tomorrow. Meanwhile, we are using Kaiser for referrals at this point - we have a video appointment with a geneticist on Friday and have a referral in to an Adolescent POTS clinic in SF as well. I feel like we need to use as many of their resources as we can so that we can save our out-of-pocket expenses for things they can't (or won't) cover - which could be sizable.

 

Rose, myco is also referred to as "walking pneumonia."  A person with myco will frequently not have the symptoms typical of regular pneumonia (It tends to be a persistent dragging cold that just doesn't seem to get better, with chronic tiredness.)  That said, I know nothing about myco and how it may or may not interact with chronic Lyme.  I just wanted to point out that your Kaiser doctor is ... odd.  (DD tended to get myco when she was smaller.)

 

FWIW, I agree with others who have suggested that it might be time to jettison Kaiser.  I think the children's hospital idea is a good one.  More :grouphug: .


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#44 Chrysalis Academy

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Posted 14 August 2017 - 05:59 PM

Well, I'll take what I can get from Kaiser: we just got referrals & appts. set up for the Genetics clinic in SF and the Teen PAD (Pediatric Autonomic Disorders) clinic in Oakland, where we get to see a teen specialist, a cardiologist, a neurologist, a Behavioral/Mental health specialist, and a physical therapist, all in one long day. I'm so happy, finally we are getting somewhere! This stuff will all be covered by insurance. No doubt all the Lyme followup and treatment we do will not be, so I'm happy to have this much at least.

 

Maybe I just really need to get a different pediatrician. Although I appreciate these referrals, I don't have much confidence in her as a physician.


Edited by Chrysalis Academy, 14 August 2017 - 06:04 PM.

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#45 RegGuheert

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Posted 14 August 2017 - 09:10 PM

I just want to say that treatment of Lyme does not have to be super expensive. There certainly are the horror stories from Under Our Skin and others from YouTube of people spending upwards of $100,000 or more, but it doesn't always cost so much. DS17's treatment, start to finish lasted 18 months and probably cost us about $3000.00 total. That includes the costs of the doctor visits, testing, medication, travel, everything. And we paid for all of that with pre-tax money from our HSA.

DS17 was treated for Lyme (in multiple forms, meaning multiple antibiotics), Bartonella, Babesia and perhaps a couple of other coinfections (wether he had them, or not). Most of the antibiotics were very affordable. One was not. It was about $600, but I ordered it from India and got if for about $150. Next time they prescribed, I asked the doctor for a substitute and got something that cost about $15 instead.
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#46 Pen

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Posted 15 August 2017 - 01:08 PM

Rose, If you can find this publication: The Complexities of Lyme Disease, A Microbiology Tutorial by Thomas M. Grier M.Sc. -- which at least used to be available free on the Canadian Lyme Disease website, "canlyme," -- it might be of help to you for some more understanding of Lyme. Also if you go to the canlyme website, clicking around on various links like coinfection etc. might be useful. Even if what dd has turns out not to be Lyme.
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#47 Sassenach

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Posted 15 August 2017 - 01:50 PM

Well, I'll take what I can get from Kaiser: we just got referrals & appts. set up for the Genetics clinic in SF and the Teen PAD (Pediatric Autonomic Disorders) clinic in Oakland, where we get to see a teen specialist, a cardiologist, a neurologist, a Behavioral/Mental health specialist, and a physical therapist, all in one long day. I'm so happy, finally we are getting somewhere! This stuff will all be covered by insurance. No doubt all the Lyme followup and treatment we do will not be, so I'm happy to have this much at least.

 

Maybe I just really need to get a different pediatrician. Although I appreciate these referrals, I don't have much confidence in her as a physician.

I've had really great experiences with specialists at Kaiser Oakland. I hope they help you get the answers you need. 


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#48 Spryte

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Posted 15 August 2017 - 03:31 PM

Rose, If you can find this publication: The Complexities of Lyme Disease, A Microbiology TutorialbyThomas M. Grier M.Sc. -- which at least used to be available free on the Canadian Lyme Disease website, "canlyme," -- it might be of help to you for some more understanding of Lyme. Also if you go to the canlyme website, clicking around on various links like coinfection etc. might be useful. Even if what dd has turns out not to be Lyme.


I am too sick to comment much, but this is an excellent article. One of my favorites.
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#49 Lori D.

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Posted 15 August 2017 - 04:33 PM

:grouphug:  :grouphug:  :grouphug:  So sorry to hear about this, Rose. 

 

Just wanted to throw in another rheumetology possibility that might be worth eliminating: lupus. The fatigue, joint pain, gastro-intestinal, inflation around heart/lungs causing chest pain or shortness of breath, and brain fog are all symptoms of lupus. Wide range of symptoms, and they can come/go. :(


Edited by Lori D., 15 August 2017 - 04:37 PM.

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#50 Pen

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Posted 15 August 2017 - 04:34 PM

In terms of decisions about whether to push for more school to continue or to take off, I think you should also look at info related to things like CFS, encephalitis, etc.  You really don't know what dd has as of right now.  

 

The only thing I am aware of likely to be helped by pushing on and where being ready for college at 18 or 19 instead of 19 or 20 might be if she were actually totally physically fine and just malingering. I doubt that is the case.  One of the best CFS books I have found has the subtitle something like

 

"'It's Mitochondria, Not Hypochondria" ...   Her situation is likely to be more akin to an athlete with a concussion who wants to keep right on playing, but needs to rest --physically and mentally--so as to more likely be able to play (or do other things) another day.


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