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

[Nemom]

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.

 

It is fantastic that you will be able to see all of these specialists and get their opinions/thoughts on what is happening with your daughter.

 

I would like to offer you a word of caution though from someone who has been there/done that.  Most, if not all of them, will likely tell that there is no such thing as chronic lyme disease.  

 

If you don't already know, lyme is called the Great Imitator because it mimics so many other illnesses.  The following link is a symptom list of lyme that is used by many LLMD's for their patients.  We have to complete one of these every time we  see our LLMD.

 

DrB_SymptomList2005Pdf.pdf

 

I have chronic lyme and my two kids have chronic, congenital lyme.  It was a long road to being dx'd and treatment was the best thing we've done.  I would be happy to answer any questions if you want to PM me.

 

I'm so sorry that your daughter and your family is going through this and I wish you the best in finding some answers quickly.  

[Stacia]

:grouphug: :grouphug:

[Chrysalis Academy]

Well, we saw our naturopath yesterday and she gave us the name of 3 Lyme literate doctors, two local and one in the next county. All expensive - one unbelievably so, and all of which we'll have to pay for out of pocket, so this is definitely going to require some retrenching/regrouping to figure out how to pay for.  Meanwhile, she's helping us with supplements & herbs for symptom management.

 

We talk to a geneticist on Friday about EDS/Joint Hypermobility syndrome.  I'm calling today to follow up on the referral to physical therapy locally.

 

Lizzie in MA pointed me toward info on Low Dose Naltrexone, which looks very promising - anybody else have any experience with that medication?

 

I also ordered Buhner's book on treating Lyme and treating coinfections. Looking forward to learning more about that approach, which is essentially concerned with improving collagen, improving immune function, and reducing inflammation alongside antibiotic treatment - support the body while you try and kill the beast.

 

I appreciate what everyone has shared and welcome more advice, experience, thoughts, etc. 

[Chrysalis Academy]

: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. :(

 

Thanks. Lupus was on our list to check out from the beginning, because her paternal grandmother died of lupus. However, she shows none of the diagnostic markers and none of the lupus-specific clinical symptoms - so many symptoms are common to multiple conditions - so we've tentatively ruled that out for now. 

[BlsdMama]

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.  :)

 

 

 

 

Your Western Blot through Igenex should have showed which bands your child was positive for - which were positive? That would tell me far more, IMO, than just equivocal.

 

Those symptoms are pretty classical Lyme.  Moreover, having had Lyme, it is most likely.  The spirochetes are relentless.  How did they treat Lyme when she was three?  Doxy - how long?

 

I would be willing to bet the Lyme spirochetes essentially went into "hibernation" and they are now active again.  Are you in a state that is Lyme friendly? Can you use out of network providers with Kaiser?  That might be your only bet for treatment.

 

Speaking as someone who is dx'd with a pretty much nearly fatal condition that I strongly feel was "switched on" by Lyme, kill it.  Kill it with fire.  Do whatever it takes to kill it now.  I cannot fathom watching this in a child.

[Chrysalis Academy]

Your Western Blot through Igenex should have showed which bands your child was positive for - which were positive? That would tell me far more, IMO, than just equivocal.

 

Those symptoms are pretty classical Lyme.  Moreover, having had Lyme, it is most likely.  The spirochetes are relentless.  How did they treat Lyme when she was three?  Doxy - how long?

 

I would be willing to bet the Lyme spirochetes essentially went into "hibernation" and they are now active again.  Are you in a state that is Lyme friendly? Can you use out of network providers with Kaiser?  That might be your only bet for treatment.

 

Speaking as someone who is dx'd with a pretty much nearly fatal condition that I strongly feel was "switched on" by Lyme, kill it.  Kill it with fire.  Do whatever it takes to kill it now.  I cannot fathom watching this in a child.

 

Here are her Western Blot resuls, I'm listing the bands that were positive:

IgM:

31 ++++

39 +

41 ++

66 +

83-93 +

 

IgG

39 - I

41- ++

 

They didn't treat her for Lyme when she was three. Because the tick tested positive, they agreed to do a prophylactic dose of amoxycillin. When she threw the rash after a couple of days on the antibiotic, they just said stop the antibiotic. It took more than a week for that rash to clear up. She never had any symptoms of illness at the time.  She was never diagnosed with Lyme and they (Kaiser docs) say it's very unlikely that she was truly exposed because the tick wasn't on her for long - we found it during evening bath after a day hike.  So It's not like we've been dealing with Lyme for 11 years - but when she got sick a year ago, we brought this incident up with the doctor. She was very dismissive of the possibility of its being Lyme. That seems to be the party line with Kaiser.

 

If we could get a clear Lyme diagnosis, I'd agree, fight it. But I don't want to ignore other possibilities, like hEDS/JHS, which antibiotics might make worse. So I'm trying to get a clear picture of what's going on before we bust out the blow torch. It's super frustrating to try and figure out. I'm hoping a Lyme Literate doc outside of Kaiser will help us figure it out for sure. Or as for sure as it gets.

[Kareni]

I've no experience to share but am sending good thoughts.  I hope that some answers and positive changes are heading your way.

 

Regards,

Kareni

[Nemom]

Here are her Western Blot resuls, I'm listing the bands that were positive:

IgM:

31 ++++

39 +

41 ++

66 +

83-93 +

 

IgG

39 - I

41- ++

 

They didn't treat her for Lyme when she was three. Because the tick tested positive, they agreed to do a prophylactic dose of amoxycillin. When she threw the rash after a couple of days on the antibiotic, they just said stop the antibiotic. It took more than a week for that rash to clear up. She never had any symptoms of illness at the time.  She was never diagnosed with Lyme and they (Kaiser docs) say it's very unlikely that she was truly exposed because the tick wasn't on her for long - we found it during evening bath after a day hike.  So It's not like we've been dealing with Lyme for 11 years - but when she got sick a year ago, we brought this incident up with the doctor. She was very dismissive of the possibility of its being Lyme. That seems to be the party line with Kaiser.

 

If we could get a clear Lyme diagnosis, I'd agree, fight it. But I don't want to ignore other possibilities, like hEDS/JHS, which antibiotics might make worse. So I'm trying to get a clear picture of what's going on before we bust out the blow torch. It's super frustrating to try and figure out. I'm hoping a Lyme Literate doc outside of Kaiser will help us figure it out for sure. Or as for sure as it gets.

 

I would guess she likely has lyme disease from the bolded above.  A prophylactic dose of antibiotic would likely have not done any good to begin with.  The rash may or may not have been an allergic reaction but also could have been the due to the abx treating the lyme.  My dd and I had rashes appear months after treatment that lasted for months.  

 

It is also a myth that the tick has to be imbedded for something like 48 hours before you can get lyme.  "My" tick was never imbedded (that I know of) but rather just crawling around on my leg and brushed off.  That was in 1991 and I didn't have symptoms until 2007.

 

I have a really good explanation sheet of all the different lyme bands from my LLMD and what they mean.  When we are done with school today, I will come back and share what each band means.  It is long...

[SarahW]

 

Speaking as someone who is dx'd with a pretty much nearly fatal condition that I strongly feel was "switched on" by Lyme, kill it. 

 

 

Just springboarding off this to offer my theory/opinion/n=1 idea:

 

I think Lyme just attacks the body where it is already weak. So, for me, I have always been a person that the Victorians would've deemed "delicate." I faint, or nearly faint, easily. When I was a kid I would often have a sensation that my feet were "burning" and I'd have to kick off my shoes before they suffocated. I have always fatigued easily, and need a lot of downtime to recharge. I had terrible heartburn issues as a teen, and lingering odd digestion things. I got a bit of tendinitis from a job a had 10 years ago, turns out I have loose finger joints.

 

I got Lyme, and then my nerves went completely screwy, I'm tired all the time, and my stomach is bloated and hurts all the time. And my tendinitis came roaring back. And one weekend I ended up in the ER worried that I was having a heart attack (I had nearly every "go to the hospital right now" symptom) but no, just really bad muscle spasms and really bad heartburn. 

 

I think this is why the list of Lyme symptoms are so long and varied and no one is quite sure how to diagnose. Like, apparently rashes and swollen joints is a major sign, but I've had neither than those (other than the bulls-eye). Like the saying that if you've seen one autistic child you've only seen one example of autism, I feel like if you see one display of symptoms of Lyme, you've only seen one example of Lyme. Depending on the person, it may present entirely differently.

 

I realize this theory isn't a lot of help to the OP, since with a child you don't have a lot to go on to see old problems represent. But I guess I'm just saying that even if her symptoms look quite different from someone you read about on the internet or meet in real life, she could still have Lyme.

 

Or something else. Once you're like this, it's a situation of diagnosis by exclusion. On all that blood work my doctor ordered this past year, she kept checking my glucose. I'm not diabetic, dammit, but I have neuropathy anyways. So it's either caused by some weird and rare disease, or it's the Lyme I got a few months ago!

[Pen]

Rose,

 

How well does dd 'recover' -- in terms of energy level, cognitive functions, headache or other pain --  after:

 

1) a short rest?

 

2) a night of sleep?

 

3) What have you noticed will tend to cause her to have worsening of symptoms?

 

4) What have you noticed will tend to cause her to have improvement of symptoms?                                                               

 

5) if she "overdoes" activity based on her current level of health, what happens, if anything, and how long do the effects last, if there are any?

 

If you call how she was before sickness "100%" what would you rate her current level of health?

 

Is it getting worse or better (general trend, ignoring up and down fluctuations), and in which direction, how fast?

[Nemom]

This information was given to me by my LLMD.  I cannot tell if he put it together himself, if it came from Igenex, or if it is from another source.  

 

Titled:  Western blot results summary for interpretation

 

Band 31 is outer source protein A.  ...what physicians actually injected into people as the Lyme vaccine before it was taken off the market.  Even though it is one of the hallmark antibodies tightly associated with borreliosis the CDC does not give it any weight.  

 

Band 39 is from the inner part of the Borrelia burgdorferi bacteria called the endoplasmic reticulum.  It is the reddest flag of the fifteen antibodies on the blot.  Other bacteria that are like the Lyme bacteria do not even have the genetics to code for this, much less produce it.  The 39 appears to be unique to Lyme bacteria.  It has even been suggested that a 39 by itself is enough to be a positive test.

 

Band 41 is the flagella or tail of the Borrelia burgdorferi, and that is how it moves around, by moving the flagella.  It is the most common Lyme antibody of all.  Even though different bacteria may have flagella and possibly cause a false positive 41 result, there is a 90% correlation with a 41 and antibiotics helping.

 

Band 66 is the second most common antibody found and is also a heat shock protein.  It is not given significance because different bacteria may produce it, even though it is the second most commonly found Borrelia burgdorferi antibody.

 

Band 83-93 is the DNA, genes, or genetic material of Borrelia burgdorferi.  The 83-93 is associated with antibiotic responsiveness in 97% of patients.

 

 

[Lizzie in Ma]

Here are her Western Blot resuls, I'm listing the bands that were positive:

IgM:

31 ++++

39 +

41 ++

66 +

83-93 +

 

IgG

39 - I

41- ++

 

They didn't treat her for Lyme when she was three. Because the tick tested positive, they agreed to do a prophylactic dose of amoxycillin. When she threw the rash after a couple of days on the antibiotic, they just said stop the antibiotic. It took more than a week for that rash to clear up. She never had any symptoms of illness at the time.  She was never diagnosed with Lyme and they (Kaiser docs) say it's very unlikely that she was truly exposed because the tick wasn't on her for long - we found it during evening bath after a day hike.  So It's not like we've been dealing with Lyme for 11 years - but when she got sick a year ago, we brought this incident up with the doctor. She was very dismissive of the possibility of its being Lyme. That seems to be the party line with Kaiser.

 

If we could get a clear Lyme diagnosis, I'd agree, fight it. But I don't want to ignore other possibilities, like hEDS/JHS, which antibiotics might make worse. So I'm trying to get a clear picture of what's going on before we bust out the blow torch. It's super frustrating to try and figure out. I'm hoping a Lyme Literate doc outside of Kaiser will help us figure it out for sure. Or as for sure as it gets.

 

That is a very positive western blot imho.  Band 31 is highly specific for Lyme

 

[Pen]

Yes. Especially if no Lyme vaccine was given to affect results, then I'd personally be extremely concerned about Lyme regardless of  Kaiser doc's thoughts on it.  Also, while one of my doctors thinks that we may be seeing a time of increased DNA changes due to chemical and electrical pollution, thus perhaps more likely for someone to develop a condition that is genetic without family history, it still seems to me that given dd's personal history with a tick bite, symptoms, and test results, that late and chronic Lyme seems quite likely, especially as compared with a usually genetic condition for which there is no family history.

 

Unfortunately, I don't think it is just Kaiser that tends to have an issue with Lyme diagnoses.  I've never been to a Kaiser and would say that what you've encountered is pretty par for the course IME.

 

 

 

 

 

http://www.lymedisease.org.au/about-lyme-disease/interpreting-lyme-disease-blood-tests/

"Interpreting Lyme disease blood tests

"The US Centre for Disease Control (CDC) has stipulated that certain “bands†in the Western Blot test must be positive in order for a Lyme test to be declared positive – the problem is that these bands were chosen for statistical, rather than diagnostic criteria. For example, the more specific bands for Lyme disease (bands 31 and 34) were excluded from the CDC criteria because they were used to create the Lyme disease vaccine (which is no longer available), thus eliminating valuable testing data. If you have not received the Lyme disease vaccine and you test positive (“+â€) or indeterminate (“INDâ€) to bands 31 and 34, you probably have Lyme disease. The CDC testing criteria actually includes a number of bands which are not specific to Lyme disease, which increases the chances of a false-negative, but only if the CDC criteria for test reporting is used.

"What is the difference between “+â€, “++â€, “+++†and “INDâ€?

"These are the level to which the laboratory technician can see the immune response to the specific part of the bacteria. Both “++†and “+++†results are very rare, and show a strong immune response to the Lyme disease bacteria. If a patient’s immune response is compromised (as it is in most Lyme disease patients and particularly in patients with neurological, late stage or severe Lyme Disease), a “IND†result is a weak positive immune response to Lyme disease and should be treated as a positive result. After treatment, many patients who are retested return stronger results, as their immune system has been able to mount a more effective response against the Lyme disease bacteria."

[Chrysalis Academy]

I'm so confused.  :crying:

Edited August 17, 2017 by Chrysalis Academy

[Nemom]

I'm so confused.  :crying:

  Understandable.  Navigating through medical issues is very confusing and sadly, IMO, most Drs are not much help.  

 

Hope you find some answers soon.

[Pen]

I'm so confused.  :crying:

 

 

About something specific?  Or the whole situation in general?

 

Any more info from visits she's had or success finding a Lyme specialist?

Edited August 20, 2017 by Pen

[Pen]

How bad can EDS get (or other things you are concerned dd may have) that could be made worse by treating for long standing Lyme?  

 

Or in other words the potential risk of untreated Lyme or other tick infections, if she has Lyme and/or its cohorts, is very serious. Though it also can be very hard to treat it successfully.

 

What are the potential risks from making the other possible diagnoses, if she has one or more of them, worse?

[Pen]

nm

Edited August 24, 2017 by Pen

[Chrysalis Academy]

I appreciate the questions, posts, and thoughts. I'm just feeling rather overwhelmed at the moment and processing, researching, and investigating. I just don't have the headspace to articulate anything clearly at the moment. When I do, I will update. Thanks again to everybody who is sharing their experience & advice.

[Roadrunner]

Hugs to you and Shannon. I hope you find answers soon.

[Chrysalis Academy]

The geneticist says that although she has 4+ hypermobile joints, she does not have Ehlers-Danlos Syndrome because she hasn't had any joint dislocations and recommends we see a rheumatologist and a gastroenterologist.

 

Meanwhile, I've been madly researching Lyme & co-infections. It seems like we are looking at Lyme + Mycoplasma infection. So I need to find a dr. that will help assess/treat that. I've got naturopaths, but they can't prescribe an antibiotic. I've got Buhner's books on treating Lyme & Mycoplasma with herbal medicine (which can be combined with antibiotics). So I guess I need to figure out what the right medications are and how to go about getting them.

 

I'm really worried about the effect of antibiotics on her already shredded GI system. Can anyone share how they've dealt with that?

[AK_Mom4]

Hi OP! When DD16 was little, she needed to be on long term antibiotics and her GI system was already a mess due to food allergies. We found some very gentle blueberry-flavored probiotics that worked wonders.

 

https://www.swansonvitamins.com/american-health-probiotic-acidophilus-blueberry-flavor-16-fl-oz-liquid

 

This is a liquid that we used, but it also comes in chewable. Our local grocery has these in the Health Food section.

[RegGuheert]

Meanwhile, I've been madly researching Lyme & co-infections. It seems like we are looking at Lyme + Mycoplasma infection. So I need to find a dr. that will help assess/treat that. I've got naturopaths, but they can't prescribe an antibiotic. I've got Buhner's books on treating Lyme & Mycoplasma with herbal medicine (which can be combined with antibiotics). So I guess I need to figure out what the right medications are and how to go about getting them.

Unfortunately, there are as many Lyme treatment regimes as there are patients.  Simply put, the treatment of Lyme disease is still extremely experimental.  And I'm not just making that up:  We had to sign a form stating exactly that in order to receive treatment for the disease.  Antibiotics worked for our son, but I cannot say that is better than any other approach.

 

I'm really worried about the effect of antibiotics on her already shredded GI system. Can anyone share how they've dealt with that?

Our son's treatment plan was extremely complex, but it included probiotics every step of the way.

 

I have heard stories about others whose doctor put them on antibiotics continuously for very long periods with no pulsing, etc.  I would be VERY leery of any type of treatment strategy which did that.

 

Best wishes for finding a doctor who can successfully treat your daughter.  I think if I had it to do over again, I would strongly consider Buhner's approach.  But you need to understand that treatment of Lyme and its coinfections is not simple nor pleasant.  It is important to understand what is going to happen when your daughter starts taking the medications.  The die-off of the Lyme bacteria causes serious symptoms (known as Herxheimer responses) which rival the effects of the disease itself.  It often feels like things are going the wrong way.  But that is normal.

 

Hang in there.  Keep studying, learning and asking questions.  You are on the right path to healing your daughter. 

[Spryte]

Whatever you do, definitely add S. Boulardii to the mix. High quality probiotics, yes, but she will need beneficial yeast as well. I like Florastor brand because they've used that brand in tests re: C Diff with success. It won't stop an infection, but it can help prevent C Diff. As a C Diff survivor, I highly recommend anything to prevent it.

 

I have the flu at the moment, and have been dealing with illness for two weeks so I haven't posted much. I had Lyme and co-infections, undiagnosed long-term.

 

I'm happy your DD will get treatment. It was long and expensive here, and my gut was a mess before and after. Oh, actually if your DD's gut is already a mess, mention that to the LLMD you decide on. I had a tapeworm, probably transmitted via tick (I think? Or maybe I was susceptible because Lyme weakens the immune system - I was a soup of co-infections and odd chronic illnesses). We didn't figure it out for a few years, once I started treatment. Yuck!!!

[Chrysalis Academy]

The geneticist thought we should have a consult with a rheumatologist and a gastroenterologist. I passed that on to our ped, along with a request for a consult with the infectious diseases specialist. She ignored the gastro question, refused the rheum, and said she had passed on the Lyme question to the ID specialist. I'm not hopeful.

 

I feel like I'm starting to get my arms around diagnostics & treatment options. There are some really promising possibilities. But I'm not sure how to find someone who is willing and/or able to prescribe what I want. Kaiser docs won't. Naturopaths can't. Still searching for the sweet spot.

[Spryte]

The geneticist thought we should have a consult with a rheumatologist and a gastroenterologist. I passed that on to our ped, along with a request for a consult with the infectious diseases specialist. She ignored the gastro question, refused the rheum, and said she had passed on the Lyme question to the ID specialist. I'm not hopeful.

 

I feel like I'm starting to get my arms around diagnostics & treatment options. There are some really promising possibilities. But I'm not sure how to find someone who is willing and/or able to prescribe what I want. Kaiser docs won't. Naturopaths can't. Still searching for the sweet spot.

Have you found a list of LLMDs in your area yet? That might help. I fear you won't get far with ID or Rheum, if it is indeed Lyme.

[Chrysalis Academy]

Have you found a list of LLMDs in your area yet? That might help. I fear you won't get far with ID or Rheum, if it is indeed Lyme.

 

I have several naturopaths, two of whom belong to larger clinics that have MDs as well, so I assume they would be able to prescribe under the MD's supervision.

 

The closest clinic is $800 to walk in the door - testing and medication extra.  I don't know if that's just what it costs, but it kind of blows my mind. We'll be in the mutliple thousands of dollars within weeks. It's hard to get your head around, or your budget. Of course diagnosing and treating your child is priceless, but it's going to mean some big changes to make it work. That's just another stress on top of all the others.

 

Perhaps I need to widen my search for doctors - I know there are several in the Bay area, but that is a long drive for regular care.

[Spryte]

It is hard, and stressful and expensive. If you go to lymenet.org and post in Seeking A Doctor, someone there will send you a list of docs in your region. You can then call and gather info re: cost, and other info. Sometimes the lists will have extra info.

 

For reference, I waited 6 mos for my LLMD. Our first appt was 4 and a half hours long. There were other options, and I was on those wait lists, too, I had appts scheduled in case my LLMD fell through for some reason. But she was my first choice, and it worked out. I was extremely lucky, as she was one of the few taking insurance then, but my treatment was horrendously expensive anyway, and we are still paying for it now. You are right that it's a lot to wrap one's head around. :(

 

I hope however you proceed works well for your whole family.

[sassenach]

The geneticist thought we should have a consult with a rheumatologist and a gastroenterologist. I passed that on to our ped, along with a request for a consult with the infectious diseases specialist. She ignored the gastro question, refused the rheum, and said she had passed on the Lyme question to the ID specialist. I'm not hopeful.

 

I feel like I'm starting to get my arms around diagnostics & treatment options. There are some really promising possibilities. But I'm not sure how to find someone who is willing and/or able to prescribe what I want. Kaiser docs won't. Naturopaths can't. Still searching for the sweet spot.

Check your inbox. Your ped is a jackass.

[Chrysalis Academy]

Check your inbox. Your ped is a jackass.

 

You post made me chuckle Thank you, and thanks for the suggestion.

[Nemom]

The Infectious Disease doctors we have dealt with do not believe in chronic lyme disease.  IMO it is a total waste of time trying to get a mainstream MD to help you with treating chronic lyme.  They just do not believe that it exists and the reality is that they can lose their medical licenses.  

 

 

I really believe it is in your daughter's best interests to at least meet with an LLMD, go through some initial testing, and talk about treatment options.  Lyme is a complicated beast even for those who have been treating it for years.  

 

[Pen]

 

I also take probiotics including probiotic foods.  And prebiotics.

 

Buhner has a section on digestive system in the protocol area, ch 8, in 2nd edition.

Edited August 24, 2017 by Pen

[Pen]

nm

Edited August 24, 2017 by Pen

[mominco]

 

Lizzie in MA pointed me toward info on Low Dose Naltrexone, which looks very promising - anybody else have any experience with that medication?

 

 

Op I am sorry your DD has been going thru all this.Are you still needing info about LDN?

If you do please feel free to pm me,My DC has been on it for the last 1.5 years though not for lyme disease.

 

:grouphug:  

[kewb]

Ldn did nothing for my husband but I know other people who have had success.

[Pen]

The geneticist thought we should have a consult with a rheumatologist and a gastroenterologist. I passed that on to our ped, along with a request for a consult with the infectious diseases specialist. She ignored the gastro question, refused the rheum, and said she had passed on the Lyme question to the ID specialist. I'm not hopeful.

 

I feel like I'm starting to get my arms around diagnostics & treatment options. There are some really promising possibilities. But I'm not sure how to find someone who is willing and/or able to prescribe what I want. Kaiser docs won't. Naturopaths can't. Still searching for the sweet spot.

 

 

What is it you want prescribed?

 

I tend to also think that an LLMD would be of use to evaluate her and have ideas beyond what you might.  Though if I were dealing with this for my own dc, I might go with Buhner on my own, especially since I don't think we have any local LLMDs at any price.

 

But if you already know what you think would be right course for her to follow, then possibly a naturopath in Oregon where they can prescribe antibiotics might be of help. Or maybe an osteopath somewhere could be more open minded.   Even if they are not Lyme specialists.

 

Or maybe on a Lyme patient support forum if you post where you are and what you want, someone would be able to suggest who might be willing to do that.

[Chrysalis Academy]

What is it you want prescribed?

 

I tend to also think that an LLMD would be of use to evaluate her and have ideas beyond what you might.  Though if I were dealing with this for my own dc, I might go with Buhner on my own, especially since I don't think we have any local LLMDs at any price.

 

But if you already know what you think would be right course for her to follow, then possibly a naturopath in Oregon where they can prescribe antibiotics might be of help. Or maybe an osteopath somewhere could be more open minded.   Even if they are not Lyme specialists.

 

Or maybe on a Lyme patient support forum if you post where you are and what you want, someone would be able to suggest who might be willing to do that.

 

That's what I'm trying to figure out - trying to figure out whether we will go with Buhner's approach with the assistance of the naturopath or whether to try to find a LLMD that would prescribe antibiotics.  I honestly don't know yet, I'm spending multiple hours per day reading Buhner, Horowitz, and other approaches. While trying to juggle school, work, and doctor/therapy/pt appointments. I'm kind of drowning here. But I need to figure out what I want so I can figure out what kind of help I need. Working on it.

[Nemom]

That's what I'm trying to figure out - trying to figure out whether we will go with Buhner's approach with the assistance of the naturopath or whether to try to find a LLMD that would prescribe antibiotics.  I honestly don't know yet, I'm spending multiple hours per day reading Buhner, Horowitz, and other approaches. While trying to juggle school, work, and doctor/therapy/pt appointments. I'm kind of drowning here. But I need to figure out what I want so I can figure out what kind of help I need. Working on it.

 

I was this way when my dd first became ill and for a couple of years afterwards while we navigated through the different diagnosis', many doctors, treatments and such.  I was at my computer from the time I woke up and until well past my normal bed time.  I was researching every spare moment I had and in most cases putting everything else on hold.  I felt it was my responsibility to find the cure and get my dd better.  

 

Rose-it wasn't healthy.  I neglected my own health, my other child, and life in general. I woke up one morning and knew that I had to go cold turkey on all the forums and online self help groups. There are some aspects of the whole situation that I still cannot talk about over five years later.  I have no doubt that I suffered from PTSD and still do to some degree.  

 

I know exactly where you are at right now and that you are fighting with everything that you have to reclaim your daughter.  I know the responsibility that you feel is sitting squarely on your shoulders.  I know the feeling that no one else cares as much as you do.  I understand the desire to fix this.  I also was drowning.

 

Rose-you can't do this on your own.  You need someone experienced in the treatment of lyme to help you.  Even if that means just to get you started and then you try to figure it out on your own.  You can always start with an LLMD and switch to a Naturopath or vice versa.  Please find someone to help you start this journey.  Don't try going it alone.

 

Praying you find some peace today and through this journey.  

[Spryte]

I was this way when my dd first became ill and for a couple of years afterwards while we navigated through the different diagnosis', many doctors, treatments and such. I was at my computer from the time I woke up and until well past my normal bed time. I was researching every spare moment I had and in most cases putting everything else on hold. I felt it was my responsibility to find the cure and get my dd better.

 

Rose-it wasn't healthy. I neglected my own health, my other child, and life in general. I woke up one morning and knew that I had to go cold turkey on all the forums and online self help groups. There are some aspects of the whole situation that I still cannot talk about over five years later. I have no doubt that I suffered from PTSD and still do to some degree.

 

I know exactly where you are at right now and that you are fighting with everything that you have to reclaim your daughter. I know the responsibility that you feel is sitting squarely on your shoulders. I know the feeling that no one else cares as much as you do. I understand the desire to fix this. I also was drowning.

 

Rose-you can't do this on your own. You need someone experienced in the treatment of lyme to help you. Even if that means just to get you started and then you try to figure it out on your own. You can always start with an LLMD and switch to a Naturopath or vice versa. Please find someone to help you start this journey. Don't try going it alone.

 

Praying you find some peace today and through this journey.

Quoting, because it needs to be said twice.

[Pen]

That's what I'm trying to figure out - trying to figure out whether we will go with Buhner's approach with the assistance of the naturopath or whether to try to find a LLMD that would prescribe antibiotics.  I honestly don't know yet, I'm spending multiple hours per day reading Buhner, Horowitz, and other approaches. While trying to juggle school, work, and doctor/therapy/pt appointments. I'm kind of drowning here. But I need to figure out what I want so I can figure out what kind of help I need. Working on it.

 

 

Another book I like very much--not on Lyme, but in general--is Andrew Saul's Doctor Your Self.  It's emphasis is on vitamins, rather than herbs  or pharmaceuticals. I find it a helpful home health reference that has helped a number of times.  While it has nothing specific to Lyme that I have found, it does have things on infection, joints and collagen support which may also be supportive.

 

I'd consider a distance phone consultation perhaps as another way to get some help.

 

If I were myself, in my own situation, needing to cope with a dc with possible Lyme, but where I was having trouble finding a practitioner to help, I think I might start with the Turmeric Milk recipe in Buhner. I use something like that for inflammation issues, joint problems and headaches, so even though he lists it for GI issues, it may help more than that--my version is a little easier in some ways, but I fresh grind the pepper because I was told that is needed to best potentiate the turmeric. If not agreeing, I'd modify it or cut it back.  

 

I'd add to that vitamin C working up to just below bowel tolerance (I personally use a combo of 3 types of vitamin C, but ds has his own favorite vitamin C so he'd probably use that if it were him).   Then I'd gradually, gradually, add more items from Buhner and Saul that would seem to address the likely issues and with consideration of any contraindications listed.  "Gradually" in terms of very low doses to start, and also gradually in terms of only one thing at a time.  

 

This would not preclude pharmaceutical antibiotics etc. later if I determined that to be the direction I wanted to push for and found someone to help with that. But it also could be that the situation would start to turn around with these other measures.  I'd be concerned about waiting too long to start into some protocol due to my own experience and that of others I know that something like this can become permanent disability.

 

As the mom of a dc with this problem, I'd also look at what I could cut back, and look for supportive measures for myself, including vitamins and herbs, perhaps meditation or time in nature, etc.

[Chrysalis Academy]

Dd had a bad POTS symptom flare for the past 4 days, which was trying. She's doing better today. And, we had a great appointment with a PT at Kaiser. He was excellent - assessed all her joints, and says they are all hypermobile, very floppy, and told us that a lot of dd's balance issues (which I was worrying were neurological) could be explained by poor propriception at the level of the joints, caused by the hypermobility. He thinks we can do a lot with exercise to get her reconditioned and to help with her joint pain. We were very encouraged and left with a set of exercises and a next appointment. Nice to have something go well! 

 

We also have a line on a new ped who is reputed to be much better, and an appt with a Lyme-literate Naturopath who focuses on neurological issues. He's part of a practice that specializes in chronic illness  with MDs on staff so if we need antibiotics or other prescriptions we can get them. We'll be able to get Craniosacral from a DO at his office, too.  He's on vacation so there is a bit of a wait but I'm hoping it will be worth it.

 

Pen, I liked the look of that Turmeric Milk shake in Buhner too, I'm definitely going to try that.  

 

Feeling a bit more settled and like I have a handle on things today.  At least we have a plan for moving forward, and for getting some professional help! That's huge.

[BlsdMama]

I haven't looked closely at Buhner but I do take an easily assimilated form of curcumin. Turmeric is challenging to absorb.

 

My current regimine is ceftriaxone with daptomycin with azithromycin, all via the PICC. I take an anti malaria drug for what appears to be babesia. We pretreated with Albenzadole for nematodes that could potentially be protecting the Lyme.

 

My diet has changed. I need a lot of well planned probiotics and my gut health is not stellar.

 

I take a lot of supplements both for health, shortfalls, and to help my body rid toxins.

 

Thus far? No change. Lyme is a nasty, nasty disease.

 

On the insurance side of things does your Kaiser insurance allow you to see out if Kaiser docs? My current MD does take my BCBS. Not everything is covered but a lot has been.

[Chrysalis Academy]

 

 

If I were myself, in my own situation, needing to cope with a dc with possible Lyme, but where I was having trouble finding a practitioner to help, I think I might start with the Turmeric Milk recipe in Buhner. I use something like that for inflammation issues, joint problems and headaches, so even though he lists it for GI issues, it may help more than that--my version is a little easier in some ways, but I fresh grind the pepper because I was told that is needed to best potentiate the turmeric. If not agreeing, I'd modify it or cut it back.  

 

 

 

I made the Turmeric Milk today, and it made dd super nauseous. How do you modify your version? And when you say cut it back, do you mean fewer herbs or do you mean drink less of it?

 

It seems like a good idea, but if it's going to make her this sick, it isn't going to work . . . I'd love to hear how you modify this recipe.

 

I'm trying to focus on supporting the collagen structures first, since this seems to be such a problem area for dd. Then I think we'll look at the cytokine cascade modulators. These are good things we can start while waiting to formulate an "official" plan with an ND/MD. And will be good to continue even if we start antibiotics. Right now dd is on supplements to correct her nutritional deficiencies, support her collagen structures, and herbs for Adrenal support and digestion/GI tract healing.

 

I just put Doctor Yourself on hold. Thanks for the suggestion. 

Edited August 29, 2017 by Chrysalis Academy

[Pen]

I made the Turmeric Milk today, and it made dd super nauseous. How do you modify your version? And when you say cut it back, do you mean fewer herbs or do you mean drink less of it?

 

It seems like a good idea, but if it's going to make her this sick, it isn't going to work . . . I'd love to hear how you modify this recipe.

 

I'm trying to focus on supporting the collagen structures first, since this seems to be such a problem area for dd. Then I think we'll look at the cytokine cascade modulators. These are good things we can start while waiting to formulate an "official" plan with an ND/MD. And will be good to continue even if we start antibiotics. Right now dd is on supplements to correct her nutritional deficiencies, support her collagen structures, and herbs for Adrenal support and digestion/GI tract healing.

 

I just put Doctor Yourself on hold. Thanks for the suggestion. 

 

 

eta: First of all, I'm so glad you have a number of things that seem to be coming together now!!!

 

 

Vitamin C is needed for collagen, I believe.

 

On the Turmeric milk:

 

a) drink less, or at least start with less and work up, And b) take out any herb or ingredient that disagrees, And c) I think I am allergic to pepper so I use as little as possible of those (the only time I use pepper at all is for Turmeric milk or a similar thing with turmeric called something like Golden Paste, entirely for the reason that the pepper along with heat apparently makes the turmeric thousands of times more effective), and may switch them out for ginger which may also work to potentiate the turmeric. If I confirm that ginger will work, I'll switch.

 

I started out by drinking only a tiny bit and then increased amount as able to handle it. Also I think I use less herbs per amount of fluid still, but not sure.

 

I use organic half and half and water, and heat only the water on stove, depending on the hot water to be the heat that activates the turmeric.  When I first did it I did not use any cinnamon or cayenne pepper, and I may drop the cayenne  again.  I have sometimes had a spoonful of coconut oil in it, but not lately.  I sort of add and drop things as they seem to help or hinder. And or as I get tired of taking things but then discover that when I don't I go downhill.  And I generally dump as many of my supplements that I take in powder form that don't taste bad to it as I can (or otherwise to green tea or cocoa or some other way to avoid lots of capsules).

 

Here is how I currently do it--and it is sort of to taste / to appearance by feel. I don't use measuring spoons etc.

 

I bring water (which is from our well and further filtered in a Berkey, so no chlorine etc., but it does have some salt and quite a bit of calcium that does not get filtered out) to a boil or almost on stove top in a Corningware pot. 

 

I pour into a 20oz Corningware mug: about 1/3 full with very hot water.

 

Into the hot water I add: 

A large pinch of organic black pepper.

A tiny itsy bitsy pinch of organic cayenne.  

Around 1 spoon and a half of organic turmeric.

Around 1 spoon of organic Sri Lanka grown cinnamon from Mountain Rose herbs (being specific bec. some other cinnamon has not agreed with me, but this one seems to--and researching it, Sri Lanka cinnamon is supposed to have some herbal health benefits that some other cinnamon does not.) 

The spoons are teaspoons in the ordinary use at table sense, not measuring spoons. 

 

My main goal is the turmeric and I have tried this without the cinnamon.  I have left off the cayenne entirely. I've also been told that ginger can work in place of the peppers to potentiate the turmeric. I haven't tried that as yet.

 

To that I add organic honey (currently YS brand) to taste--based on what I guess will taste right from prior times, I don't actually taste it yet.

 

Mix everything. 

 

To that I add Organic Valley half and half (which I already know I can tolerate currently and also for me it tends to help with some nausea issues...ginger can also sometimes help)--also "to taste" and probably as much or close to as much as there was hot water.  

 

This is where I first taste. And could sip/drink it at that point.  Which for starters I would do in very small sips and have more only to extent it seems to be fine. As it is, I sometimes don't finish mine at all, or have some and then some more later.   

 

To this basic mix I tend to consistently add: d-Ribose 1500-5000mg, L-Glutamine 1/4 spoon-ish, inositol heaping spoon, all of which are sweet.  These fit  some of my particular issues--particularly mitochondrial fatigue.  But I think that glutamine is also used for GI issues (see Horowitz p. 214).

 

When I have had a lot of GI issues going on I have tried to get as much as possible via skin, so for example, epsom salt baths for magnesium as is often done by many people, but I have experimented with other things done that way too, especially minerals.  I've also tried some vitamins including Niacinamide and Vitamin C topically (esp because I've had some skin cancer) which takes caution due to that it can burn.  I've previously used very weak acorbic acid, and not anywhere that a burning feeling would be a problem--though I found it burny feeling even just on my shoulder with no cut and not a mucous membrane, but am thinking to try sodium ascorbate to see if in that less acidic form it would burn less.  

 

I also have nausea and vomiting so bad sometimes that I use a regular pharmaceutical for that which is...whatever the generic name is for what used to be called Phenergan, I think.  I avoid it because it makes me sleepy, but if headaches and nausea get bad enough I may as well be sleepy.

Edited August 29, 2017 by Pen

[Jean in Newcastle]

I take Curcumin capsules.  I like Curcumasorb by Pure Encapsulations. 

[Lizzie in Ma]

I forgot to get back to you but wanted to add we've been using the Cusack protocol for the girls Ehlers Danlos.

http://ouredsjourney.weebly.com/what-works.html

We have them on the maitake and I get it on Amazon.

 

[Tiramisu]

Not to complicate things for you, but before you even shared what the PT said, I could tell the geneticist you saw wasn't the best for evaluating EDS because we went through the same thing.

 

You might not want to worry about this now, but someday, visit a geneticist who is really familiar with how EDS affects all systems and doesn't limit evaluation to looking at a few joints.

 

I'm sorry that happened to you.

[Chrysalis Academy]

eta: First of all, I'm so glad you have a number of things that seem to be coming together now!!!

 

 

Vitamin C is needed for collagen, I believe.

 

On the Turmeric milk:

 

a) drink less, or at least start with less and work up, And b) take out any herb or ingredient that disagrees, And c) I think I am allergic to pepper so I use as little as possible of those (the only time I use pepper at all is for Turmeric milk or a similar thing with turmeric called something like Golden Paste, entirely for the reason that the pepper along with heat apparently makes the turmeric thousands of times more effective), and may switch them out for ginger which may also work to potentiate the turmeric. If I confirm that ginger will work, I'll switch.

 

 

 

Thanks for all the detail. I'm going to try it again but try having her drink a small amount & build up. I like the idea of this because it's got the nutrition of coconut milk. Sometimes the gastroparesis is so bad that dd just can't face eating, but smoothies work well for her. I like the idea of having another liquid meal that has some good fats & calories. But of course if it makes nausea worse that is counterproductive. I think maybe I just had her drink too much - we'll try a tiny amount today.

 

I take Curcumin capsules.  I like Curcumasorb by Pure Encapsulations. 

 

If the turmeric milk just doesn't work we can go with the curcumin supplements - thanks.

 

I forgot to get back to you but wanted to add we've been using the Cusack protocol for the girls Ehlers Danlos.

http://ouredsjourney.weebly.com/what-works.html

We have them on the maitake and I get it on Amazon.

 

Yes, I've got that too - so far we are on the Aloe & Probiotic. We're also doing Great Lakes Collagen powder and Vit C.  Left to my own devices I'd add the rest of the Cusack protocol, slowly, but we'll see what the new ND says.  I like that Facebook group.

 

Not to complicate things for you, but before you even shared what the PT said, I could tell the geneticist you saw wasn't the best for evaluating EDS because we went through the same thing.

 

You might not want to worry about this now, but someday, visit a geneticist who is really familiar with how EDS affects all systems and doesn't limit evaluation to looking at a few joints.

 

I'm sorry that happened to you.

 

I suspect you are right - we've seen other reports from folks with EDS that diagnosis is a crap shoot. Lots of people have shared that they were diagnosed without dislocations, based on the same kind of joint mobility dd shows. For now we can live with "Joint Hypermobility Syndrom" as a diagnosis, but I definitely don't consider that definitive. It seems to be part of the KP Stone Wall - deny diagnosis so you can deny specialist referrals and treatment.

 

I also find it annoying that the ped refuses a rheumatology referral because dd's inflammation markers are low. As if the only thing rheumatologists treat is arthritis??? But I've given up on this ped and am focusing on switching to a better one, so I'm not even engaging that with her.

 

Thanks, everybody. Today is a new day, we'll see how it goes.

[BlsdMama]

Thanks for all the detail. I'm going to try it again but try having her drink a small amount & build up. I like the idea of this because it's got the nutrition of coconut milk. 

 

 

Personally? I would do the coconut milk if you like it for the fats and nutrition but I would curcumin over tumeric.  Tumeric is WAY cheaper but unfortunately if you look up how bioavailable it is, it really isn't.  It needs to be altered or black pepper added in order to absorb the amounts you need to decrease inflammation.  Something to consider.

[Chrysalis Academy]

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.