Lyme disease

[Princess Ariel]

Thank you for responding.  Apologies to OP-did not mean to interrupt the  thread but this was just too timely for me to ignore. I wish your ds all the best.

 

I am already gluten free, almost completely dairy and sugar free. I do get the shooting pains and wonder if that is when I consume the little dairy that I do ingest.

 

I am supposed to call after I finish this prescription and let them know how I feel as the Dr. who is treating me said one month might not be enough. I generally do not tolerate antibiotics very well but I am spacing probiotics in between and that is helping.  I will be researching like crazy!  I do know the little I did research prior to today showed that  some odd health  symptoms that I am dealing with do have a connection to  Lyme.  So much is making sense now!

Thanks again to all who shared!  

[Nemom]

Thank you for responding. Apologies to OP-did not mean to interrupt the thread but this was just too timely for me to ignore. I wish your ds all the best.

 

I am already gluten free, almost completely dairy and sugar free. I do get the shooting pains and wonder if that is when I consume the little dairy that I do ingest.

 

I am supposed to call after I finish this prescription and let them know how I feel as the Dr. who is treating me said one month might not be enough. I generally do not tolerate antibiotics very well but I am spacing probiotics in between and that is helping. I will be researching like crazy! I do know the little I did research prior to today showed that some odd health symptoms that I am dealing with do have a connection to Lyme. So much is making sense now!

Thanks again to all who shared!

Not tolerating abx might actually be because they are killing the lyme & co and you are herxing. I had a surgeon start me on abx prior to my knowledge of having Lyme and I thought I was allergic, not tolerating it, and just generally felt horrible on it. A month later I discovered the Lyme and it all made sense.

[MEmama]

Thank you for responding. Apologies to OP-did not mean to interrupt the thread but this was just too timely for me to ignore. I wish your ds all the best.

 

I am already gluten free, almost completely dairy and sugar free. I do get the shooting pains and wonder if that is when I consume the little dairy that I do ingest.

 

I am supposed to call after I finish this prescription and let them know how I feel as the Dr. who is treating me said one month might not be enough. I generally do not tolerate antibiotics very well but I am spacing probiotics in between and that is helping. I will be researching like crazy! I do know the little I did research prior to today showed that some odd health symptoms that I am dealing with do have a connection to Lyme. So much is making sense now!

Thanks again to all who shared!

The more discussion the better! I'm glad other posters have good advice for you. All the best in your journey to health! (( ))

[Lizzie in Ma]

Can I jump in here with questions?

 

 I have my test results in front of me with one positive band showing. Not sure which test this was, says Antibodies (IGG,IGM), Immunoblot and Lyme Disease AB (IGG), Blot.  I was told last summer that it was a false positive.  However, now with more  symptoms presenting since that time  including a swollen painful knee they are treating me with a month of doxy. I was intitally treated with two weeks of doxy 5 years ago after having what I thought was a tick  bite (very reluctantly treated by that doctor who tried to tell me it was something else).

 

This is all new to me.  I do feel a bit better after being on the doxy for almost 2 weeks, knee a little less swollen.  But I need to figure out what to do next. I keep having episodes of feeling like I am getting the flu, tired, achy, low grade fever.  All of my other testing comes back normal.

Thanks!

PA

 

ETA: they never actually said I have Lyme, just said they are suggesting treatment for it, which I am doing.

 

The book Why Can't I get Better is our Lyme bible, can't recommend it highly enough.  It has protocols in the appendix.  I bought a copy for our primary and she is treating youngest and now me out it it. 

 

Doxy is great if it is a new case or in combo with other drugs. 

 

If you had it 5 years ago, two weeks of doxy is likely to have just thrown it into cyst form and it's hiding.  A single lyme specific band from what I call a "crap lab" is significant.  I would accept no less than 4-6 weeks for a new case but there may also be co-infections, which the tests are also flawed for and if they are involved, the meds are different.  So if you don't get better, refractory symptoms, co-infections could be the culprit.

 

Most regular bloodwork is normal in Lyme patients, another reason we get blown off. 

 

For example, youngest had her symptoms return after 3 years, inadequate treatment 1st time around because I (and obviously our doctor) didn't know any better, fatigue, anxiety, swollen and painful knees, headaches, wrist and neck pain.  She is currently on Bactrim, Clarithromycin and Plaquenil and we are treating until she is symptom free for two months as is recommended.  She also has bartonella.  Which is what the Bactrim if for.

 

I just tested positive for the first time, a single band, but it was band 34, highly specific for Lyme. I am on the last of 6 weeks of doxycycline.  Also had mycoplasma pneumonia, a co-infection and was on azithromycin for that.

 

And oldest is a battle for her life, she's had it the longest, went undiagnosed the longest, and is on a combo of oral and iv drugs that gets changed up every 8 weeks.  She has NeuroLyme, Neurological Bartonella and Babesia.  The bartonella is the worst of it currently.

 

Everyone's immune system reacts differently, some people do great, from what I understand 70% of cases do well with adequate treatment the first time around.  If you are lucky enough to have a bulls eye rash, and lucky enough to have a doctor who knows what adequate treatment is.

 

Part of why regular doctors hate and distrust Lyme as a diagnosis is that so many of the symptoms are subjective.  You can't see them, you can't test for them, you can't quantify them, and if they can't "prove" them, then they don't exist except in your head.

 

It is sad when you have to become your own expert, and then fight for your treatment.

[Spryte]

Beautifully said, Lizzie.

 

And...  :grouphug: .  I didn't know you were treating yourself now, too.  

[Lizzie in Ma]

Beautifully said, Lizzie.

 

And...  :grouphug: .  I didn't know you were treating yourself now, too.  

 

Thanks, I try, I don't want to be Crazy Lyme Lady either, but I don't want anyone to go through our horrors either.

Yeah, I was floored, went in with the pneumonia and she ran a western blot.  Band 34, bam. 

[Nemom]

Beautifully said, Lizzie.

 

And... :grouphug: . I didn't know you were treating yourself now, too.

 

Are you still in some form of treatment?

 

We are in the middle of treatment. Started in 2011. Oldest stopped abx earlier this year and has done well but I find myself always on alert for a return. I stopped abx for about a year because I needed to make sure another "unrelated" infection had cleared up so I could have surgery. Symptoms came back this summer and I am trying to get back up to all abx. DD is the worst off with multiple other health issues likely caused by the lyme which she will have to deal with her whole life likely. Her treatment has been harder to ramp up because of these.

 

We are on our third LLMD and I am not sure that this one will work out. 1st-too far away; 2nd lost his license.

[Spryte]

Are you still in some form of treatment?

 

We are in the middle of treatment. Started in 2011. Oldest stopped abx earlier this year and has done well but I find myself always on alert for a return. I stopped abx for about a year because I needed to make sure another "unrelated" infection had cleared up so I could have surgery. Symptoms came back this summer and I am trying to get back up to all abx. DD is the worst off with multiple other health issues likely caused by the lyme which she will have to deal with her whole life likely. Her treatment has been harder to ramp up because of these.

 

We are on our third LLMD and I am not sure that this one will work out. 1st-too far away; 2nd lost his license.

 

:grouphug: The Lyme life is so tough.  And we have to be aware, always, that symptoms can come back, that there's not a real way to be sure it's gone.  I can't imagine watching a child go through treatment for chronic Lyme and co's.  My heart just aches for all of you Moms of Lymies.

 

Yes, I am much, much better but will always have "souvenirs" due to being undiagnosed/untreated for 20 years. I was treated for Lyme, Babesia (Microti and Duncani), Bartonella, Erlichiosis, Colorado Tick Fever (viral, but went chronic), chronic Salmonella (also transmitted by ticks), parasites, and ... there were 2 more chronic infections but I'm blanking them out right now.  For the most part, we've got it all under control - it took almost 5 years on abx though, with lots of cycling through different combos.  Now I am dealing with the Fry bug.   Protomyxzoa Rheumatica and hypercoagulation.  

 

As a result of Lyme & friends, I have Addison's Disease now, Hashimoto's, POTS, sortof a constellation of related diagnoses.  Plus, trigeminal neuralgia episodes that are excruciating.  And I've had recurring C. Diff because I was not vigilant with taking S. Boulardii during treatment (I can't stress the importance of S. Boulardii enough to anyone treating long-term!).  All of this is better than the state I was in pre-diagnosis, though, and the prognosis I'd received from 2 neurologists, a rheumatologist and a bunch of other specialist docs who missed what was going on.  I am grateful every day for my LLMD!

 

I hope your current LLMD is a good fit.  I got so lucky with mine, and our whole family adores her.  She's treated everyone in our family, at this point, and not just for Lyme.  (Have you noticed that LLMDs are simply the most excellent, open-minded diagnosticians around?  Something about continually challenging themselves, maybe?)

[Nemom]

:grouphug: The Lyme life is so tough. And we have to be aware, always, that symptoms can come back, that there's not a real way to be sure it's gone. I can't imagine watching a child go through treatment for chronic Lyme and co's. My heart just aches for all of you Moms of Lymies.

 

Yes, I am much, much better but will always have "souvenirs" due to being undiagnosed/untreated for 20 years. I was treated for Lyme, Babesia (Microti and Duncani), Bartonella, Erlichiosis, Colorado Tick Fever (viral, but went chronic), chronic Salmonella (also transmitted by ticks), parasites, and ... there were 2 more chronic infections but I'm blanking them out right now. For the most part, we've got it all under control - it took almost 5 years on abx though, with lots of cycling through different combos. Now I am dealing with the Fry bug. Protomyxzoa Rheumatica and hypercoagulation.

 

As a result of Lyme & friends, I have Addison's Disease now, Hashimoto's, POTS, sortof a constellation of related diagnoses. Plus, trigeminal neuralgia episodes that are excruciating. And I've had recurring C. Diff because I was not vigilant with taking S. Boulardii during treatment (I can't stress the importance of S. Boulardii enough to anyone treating long-term!). All of this is better than the state I was in pre-diagnosis, though, and the prognosis I'd received from 2 neurologists, a rheumatologist and a bunch of other specialist docs who missed what was going on. I am grateful every day for my LLMD!

 

I hope your current LLMD is a good fit. I got so lucky with mine, and our whole family adores her. She's treated everyone in our family, at this point, and not just for Lyme. (Have you noticed that LLMDs are simply the most excellent, open-minded diagnosticians around? Something about continually challenging themselves, maybe?)

Wow! You are still facing an uphill battle. (((Hugs)))

 

I am always amazed by how positive and blessed so many with Lyme feel. We are all so sick and most are faced with life long battles but everyone is always so grateful to be "healthy" and alive.

[MariannNOVA]

I agree with everything you said, Mariann -- but mostly I wanted to say how great it is to see you here again!!! :party:

Awwwwww, thank you! I pop by every once in awhile. So nice to be able to say hi to you! Hope all is well!

[Capt_Uhura]

LIzzie, How do you know your daughter has neuroLyme? My son just had a brain MRI w/ and w/out contrast which was normal but I understand abnormal results on MRI is only in about 20% of patients. My son is still dealing with stomach pain, now chronic nausea, fatigue, brain fog. 

 

Sybil

 

The book Why Can't I get Better is our Lyme bible, can't recommend it highly enough.  It has protocols in the appendix.  I bought a copy for our primary and she is treating youngest and now me out it it. 

 

Doxy is great if it is a new case or in combo with other drugs. 

 

If you had it 5 years ago, two weeks of doxy is likely to have just thrown it into cyst form and it's hiding.  A single lyme specific band from what I call a "crap lab" is significant.  I would accept no less than 4-6 weeks for a new case but there may also be co-infections, which the tests are also flawed for and if they are involved, the meds are different.  So if you don't get better, refractory symptoms, co-infections could be the culprit.

 

Most regular bloodwork is normal in Lyme patients, another reason we get blown off. 

 

For example, youngest had her symptoms return after 3 years, inadequate treatment 1st time around because I (and obviously our doctor) didn't know any better, fatigue, anxiety, swollen and painful knees, headaches, wrist and neck pain.  She is currently on Bactrim, Clarithromycin and Plaquenil and we are treating until she is symptom free for two months as is recommended.  She also has bartonella.  Which is what the Bactrim if for.

 

I just tested positive for the first time, a single band, but it was band 34, highly specific for Lyme. I am on the last of 6 weeks of doxycycline.  Also had mycoplasma pneumonia, a co-infection and was on azithromycin for that.

 

And oldest is a battle for her life, she's had it the longest, went undiagnosed the longest, and is on a combo of oral and iv drugs that gets changed up every 8 weeks.  She has NeuroLyme, Neurological Bartonella and Babesia.  The bartonella is the worst of it currently.

 

Everyone's immune system reacts differently, some people do great, from what I understand 70% of cases do well with adequate treatment the first time around.  If you are lucky enough to have a bulls eye rash, and lucky enough to have a doctor who knows what adequate treatment is.

 

 

 

[Lizzie in Ma]

LIzzie, How do you know your daughter has neuroLyme? My son just had a brain MRI w/ and w/out contrast which was normal but I understand abnormal results on MRI is only in about 20% of patients. My son is still dealing with stomach pain, now chronic nausea, fatigue, brain fog. 

 

Sybil

 

Because most of her symptoms are neurological, our LLMD diagnosed her with neuro-lyme.  I am sorry to hear your son is still feeling poorly Sybil.

Her neuro symptoms include short-term memory, problems with verbal fluency, problems with slower speed of thinking, irritability, easy tearfulness, anxiety, and depression, auditory/visual hallucinations and sleep disturbances.

Bartonella complicated the picture, her major bartonella issues are all neurological as well.  She's irritable, hostile, and can have rage attacks and panic attacks.  Huge sensory issues with hearing and light. 

It's not pretty.

 

[MEmama]

UPDATE:

 

DS had a follow up appt today with his usual doctor. Can I just say how awesome you all are? Because I was so prepared and had so many question thanks to all of you, he referred us to an infectious disease specialist in a nearby city. He readily agreed that much is unknown when it comes to Lyme and possible co-infections, and he wanted to make sure DS is getting properly treated and my questions properly addressed. He showed us all the test results (and gave me copies)--DS had 9 positive bands on the IgG--and was totally open to extending the 28 day prescription of doxy when I expressed concern that we ought to be more aggressive. He even called the specialists office during our appointment to make sure DS can get get in right away.

 

So far DS feels fine on the doxy (he's eating yogurt and drinking keifer in between doses to strengthen his immune system) and the swelling is going down. I'm feeling really empowered thanks to all the great advice and widom you've shared, and just really want to express my gratitude. :)

[Lizzie in Ma]

Memama, I am glad to hear it, I hope and pray the appointment goes well.  I just want to give you a heads up here, ID docs are not particularly helpful with Lyme and Co, though there are exceptions.  Keep educating yourself and trust no one.

If things get worse or you aren't getting the help you need, I really would find an LLMD to make sure he kicks this hard and fast.

You probably should have him on actual probiotics, not just kefir and yogurt, two hours apart from the doxy.  Also, D3, C and Magnesium.

[Nemom]

Great to hear he is doing well and your Dr was receptive to further treatment.

 

A lot of Lyme patients will tell you that they did not have a good experience with an ID. I developed a secondary infection from a surgery while being treated for chronic lyme. The ID who treated that infection did not believe in chronic or congential lyme. We were able to agree to disagree and neither one of us brought it up again during the 18 months that he treated me. Fortunately for me, the meds needed to treat the secondary infection were the same ones that were effective for treating the lyme. The secondary infection cleared up but the lyme hangs on. :-(

 

The Ped. ID we met with for our daughter pretty much told us we were crazy and said to bring my dd back when she was running a fever. This was inspite of all of her other symptoms which was quite a long list for a 6 yr old.

 

Continue to educate yourself and speak up. Your son has one awesome Momma!

[Corraleno]

We are another family who did not have a good experience with the ID specialist. :(

 

Although he was at least willing to order the correct test (IgG), he knew very little about Lyme, skimmed a few outdated articles, and decided that if DS wasn't all better after a month on doxy, the next step was very aggressive in-patient IV treatment. I sent him links to studies showing that long-term treatment with doxy (or alternating doxy & zithro) had been shown to be just as effective, with fewer side effects, at which point he went all "I'm the expert you're just a mom" on me. He also insisted on setting up an appointment with a psychiatrist, to determine whether DS's frequent and overwhelming panic attacks were "all in his head" and unrelated to Lyme. That's where we parted company. We were very lucky in having a flexible, open-minded ped who was willing to work with us.

 

I really hope your experience with the ID is better than ours, but you should be prepared for the possibility that he will be even less "Lyme literate" than your GP. :(

 

 

[TGHEALTHYMOM]

Sorry you are dealing with Lyme disease.  I have had it 2 times that I know of and antibiotics cleared me up the first time.  I had the bulls eye rash and felt flu like.  

Then about 6 years later I had a red rash and felt flu like more severely ( deer ticks are so small, they take time to grow and are difficult to see).  I went to one Dr. that was closed, then to convenient care who were out to lunch... I then went to the Health food store I trust and asked for help!  I had taken Olive leaf extract in pill form before, but they suggested the Liquid Olive leaf complex.   I took a tablespoon with water and felt so much better within a half hour.  I kept taking it 3 times a day for 7 days.  I felt much better the next day but kept taking it just like an antibiotic since there are no specific directions.  I had so much energy!  I keep Olive leaf in our cabinet as much as possible.  

 

  We have to take antibiotics at times but we all use Olive leaf in the winter and any time we feel sick first.

[Catwoman]

Thank you for posting the update!

 

I hope your next update is to tell us the doxy worked and that he is fine!!!

[kewb]

We are another family who did not have a good experience with the ID specialist. :(

 

Although he was at least willing to order the correct test (IgG), he knew very little about Lyme, skimmed a few outdated articles, and decided that if DS wasn't all better after a month on doxy, the next step was very aggressive in-patient IV treatment. I sent him links to studies showing that long-term treatment with doxy (or alternating doxy & zithro) had been shown to be just as effective, with fewer side effects, at which point he went all "I'm the expert you're just a mom" on me. He also insisted on setting up an appointment with a psychiatrist, to determine whether DS's frequent and overwhelming panic attacks were "all in his head" and unrelated to Lyme. That's where we parted company. We were very lucky in having a flexible, open-minded ped who was willing to work with us.

 

I really hope your experience with the ID is better than ours, but you should be prepared for the possibility that he will be even less "Lyme literate" than your GP. :(

 

We also had an awful experience with an ID.  Top guy in our area and I swear if I had been the patient instead of dh he would have told me I had the vapors and to go see a shrink.  Since dh was the patient he declared possibly post lyme syndrome, go see a neurologist (we were already seeing one, thanks for nothing).

[Spryte]

Yes, be aware that Infectious Disease docs are not always the best option. Mine was missed by two of them. :(

 

It sounds wrong to say an ID doc isn't always the way to go, but they often have a different take on Lyme. Watch Under Our Skin on Netflix, for some background. It's ... Complicated and political. And patients are suffering as a result.

 

Rather than an ID, you might consider finding an LLMD.

[MEmama]

Yesterday I thought this was a terrific step forward, but now I'll be more on guard. There is NO question it's Lyme and he's already being treated, but the GP referred us there because I had so many questions he was unsure of. I really respect that he admits when something is outside his area of expertise.

 

So we will see the ID but I'll be prepared for battle! :). My biggest concerns are getting him on a longer rx of doxy (which the GP can do) and getting proper testing for any silent co-infections. If I'm not satisfied I'll go searching for a LLMD.

[Lizzie in Ma]

Yes, be aware that Infectious Disease docs are not always the best option. Mine was missed by two of them. :(

 

It sounds wrong to say an ID doc isn't always the way to go, but they often have a different take on Lyme. Watch Under Our Skin on Netflix, for some background. It's ... Complicated and political. And patients are suffering as a result.

 

Rather than an ID, you might consider finding an LLMD.

 

We finally let Rowan watch Under Your Skin with us last week, we had watched it but were not ready for her to.  The sequel is out now too, it's on my wish list.  It never gets easier to watch but she loved seeing her LLMD in it.  I cuss out the two ISDA doctors in it every time they comes on screen, I can't stop myself.

[Jasperstone]

Mayo is notorious for not believing in chronic Lyme, most of the big hospitals follow the CDC/ISDA bandwagon.

I am thrilled your daughter is well, but I would be highly on the alert for any symptoms, two weeks isn't enough.

It's possible that on that short of a course, it simply threw the spirochetes into cyst form and it is hiding and dormant. I really really don't want to be a Debbie Downer, but, like Spryte, I do know the enemy, and it is a treacherous bitch.

Just keep an eye on her and act quickly if you need to.

Virtually no hospital in Australia believes it exists here. So many people suffer unnecessary! I don't understand why the denial. ....

[Spryte]

We finally let Rowan watch Under Your Skin with us last week, we had watched it but were not ready for her to.  The sequel is out now too, it's on my wish list.  It never gets easier to watch but she loved seeing her LLMD in it.  I cuss out the two ISDA doctors in it every time they comes on screen, I can't stop myself.

 

It's intense, isn't it?  I cried my way through the first viewing, but have seen it a few more times since.  It's amazing that it's on Netflix now, and readily available for all to see.  I'm so glad about that.  

 

Haven't seen the sequel yet, but looking forward to it.   Sadly, I don't really feel we've come a long way since it was made - I think there's a lot more awareness, but I'd like to see more changes from the IDSA, obviously.  (Yep, I do some cussing when I see the IDSA docs, too!)

[Spryte]

Virtually no hospital in Australia believes it exists here. So many people suffer unnecessary! I don't understand why the denial. ....

 

You might want to watch Under Our Skin, too.  :)  It does a good job explaining some of the denial.

 

Hmmmm, it's been a while since I've seen it, might have to pull it off the shelf and watch again.  

[Jasperstone]

It's weird that even when proven- tests positive from Germany etc. ..they still say that it's not true.They even went as far as saying that Germany's labs are faulty!

 

Will Google it now, thanks.