New Lyme Diagnosis-Questions

[rjand6more]

Hello.  I have been having many issues over the past 2 years that I now believe are all Lyme related.  I have mentioned at EVERY dr visit(GP, Rheumatology, Ophthalmology,  ENT) that symptoms began after a deer tick bite in 2014.  But, since I had no bullseye rash or fever no one ordered a Lyme titre.

 

Last December I had a migraine.  I have never experienced pain like this(aside from childbirth).  It was an 8/10.  I went to the dr.  They did bloodwork.  All normal.  After that, I began having severe anxiety and full blown panic attacks several times a week.  I withdrew from life.  Then, my knees and neck began crackling and were sore/stiff/painful.  Dr ordered ANA.  It was positive 1:320(nucleolar pattern).  I saw a rheum and he determined I did not present enough symptoms to have a dx.  Then last week I had a scary episode.  Chest pain,arm numbness, nausea.  EKG was normal and cardiologist ordered a stress test and echo.  It is schedule for next week.  The dr ordered a Vit D because I am always low and she thought it might account for the fatigue.  I AGAIN mentioned Lyme and she ordered it this time.  It was positive and I was referred to infectious disease.

 

I saw the "Lyme Specialist " today.  He told me Chronic Lyme is make believe.  My Western Blot showed I had had a recent exposure(I guess this IS possible??).  I told him of my 2 years of symptoms.  He said it was coincidence and was probably related to the ANA.  He said I could go find someone claiming to know about a fake disease and pour lots of time and money down the drain.  He said if my symptoms are not cured by the antibiotics, they are not related to Lyme.  He also said he does not test for coinfections.  Because, if I had one, I would be a lot sicker.(???)

 

He said he very rarely gives more than 2 weeks  of Doxy, but he is writing it for 4 weeks, so I should be grateful.(??)

 

I would love to find a LLMD.  I have been to a couple forums, but there does not seem to be ones in my area(Chicago.)

 

Please advise.  Is 4 weeks of Doxy enough to clear my body of this nasty bug?  Will I ever feel the same?  Should I be taking supplements?  I tried magnesium. It gave me tummy troubles.

[Guest]

I can't speak to all the things, but my DD had 6 weeks of doxycycline after her Lyme Dx; her symptoms were severe. She has not had recurrent problems.

[MEmama]

Please find a LLMD, even if you have to travel. The so called specialists are worthless (and I wouldn't say that about any other type, but with Lyme it seems to be across the board true). Demand 6 weeks of Doxy at minimum. 4 weeks is insufficient as it won't kill the entire lifecycle (now you can educate your doctor! Ha). However, since it sounds like you are dealing (also) with old symptoms and quite possibly co-infections, you'll need to get those diagnosed and treated separately. A quickie round of doxy won't help those.

 

I'm so, so sorry you are going through this. There are some incredibly helpful and Lyme knowledgable posters here; hopefully they will see this and chime in.

[Selkie]

My son was very ill with Lyme six years ago and took doxycycline for three or four weeks (can't remember exactly, but it was definitely not more than 4 weeks).  His symptoms cleared right up and he has not had any further problems.

 

Hope you feel better soon!

[TranquilMind]

Hello.  I have been having many issues over the past 2 years that I now believe are all Lyme related.  I have mentioned at EVERY dr visit(GP, Rheumatology, Ophthalmology,  ENT) that symptoms began after a deer tick bite in 2014.  But, since I had no bullseye rash or fever no one ordered a Lyme titre.

 

Last December I had a migraine.  I have never experienced pain like this(aside from childbirth).  It was an 8/10.  I went to the dr.  They did bloodwork.  All normal.  After that, I began having severe anxiety and full blown panic attacks several times a week.  I withdrew from life.  Then, my knees and neck began crackling and were sore/stiff/painful.  Dr ordered ANA.  It was positive 1:320(nucleolar pattern).  I saw a rheum and he determined I did not present enough symptoms to have a dx.  Then last week I had a scary episode.  Chest pain,arm numbness, nausea.  EKG was normal and cardiologist ordered a stress test and echo.  It is schedule for next week.  The dr ordered a Vit D because I am always low and she thought it might account for the fatigue.  I AGAIN mentioned Lyme and she ordered it this time.  It was positive and I was referred to infectious disease.

 

I saw the "Lyme Specialist " today.  He told me Chronic Lyme is make believe.  My Western Blot showed I had had a recent exposure(I guess this IS possible??).  I told him of my 2 years of symptoms.  He said it was coincidence and was probably related to the ANA.  He said I could go find someone claiming to know about a fake disease and pour lots of time and money down the drain.  He said if my symptoms are not cured by the antibiotics, they are not related to Lyme.  He also said he does not test for coinfections.  Because, if I had one, I would be a lot sicker.(???)

 

He said he very rarely gives more than 2 weeks  of Doxy, but he is writing it for 4 weeks, so I should be grateful.(??)

 

I would love to find a LLMD.  I have been to a couple forums, but there does not seem to be ones in my area(Chicago.)

 

Please advise.  Is 4 weeks of Doxy enough to clear my body of this nasty bug?  Will I ever feel the same?  Should I be taking supplements?  I tried magnesium. It gave me tummy troubles.

Don't you need 2 months minimum of Doxycycline if you are positive?  Now find someone else who will also give you a month's worth, and at least you have that to start.  Surely there is someone. 

 

I hope you find an LLMD. 

[rjand6more]

Please find a LLMD, even if you have to travel. The so called specialists are worthless (and I wouldn't say that about any other type, but with Lyme it seems to be across the board true). Demand 6 weeks of Doxy at minimum. 4 weeks is insufficient as it won't kill the entire lifecycle (now you can educate your doctor! Ha). However, since it sounds like you are dealing (also) with old symptoms and quite possibly co-infections, you'll need to get those diagnosed and treated separately. A quickie round of doxy won't help those.

 

I'm so, so sorry you are going through this. There are some incredibly helpful and Lyme knowledgable posters here; hopefully they will see this and chime in.

 

How to find a LLMD?

 

It appears there are none within 100 miles.:(  I am hopeful about a local support group.  Maybe someone knows someone who knows something....sigh

[rjand6more]

I can't speak to all the things, but my DD had 6 weeks of doxycycline after her Lyme Dx; her symptoms were severe. She has not had recurrent problems.

 

 

My son was very ill with Lyme six years ago and took doxycycline for three or four weeks (can't remember exactly, but it was definitely not more than 4 weeks).  His symptoms cleared right up and he has not had any further problems.

 

Hope you feel better soon!

 

This is very encouraging!  I needed to hear that! Did the GP write the rx? 

 

My main concern is that it has taken so long to diagnose.

[rjand6more]

Don't you need 2 months minimum of Doxycycline if you are positive?  Now find someone else who will also give you a month's worth, and at least you have that to start.  Surely there is someone. 

 

I hope you find an LLMD. 

 

I really don'y know.  The ID Dr today made it sound like he has NEVER given more than 4 weeks and that is even rare.  This guy is THE Lyme guy in our area.

[MEmama]

How to find a LLMD?

 

It appears there are none within 100 miles.:( I am hopeful about a local support group. Maybe someone knows someone who knows something....sigh

Have you contacted this group?

 

http://www.chicagolyme.com

 

I'm not in your area at all. Hopefully someone can get you local info!

[wapiti]

I really don'y know.  The ID Dr today made it sound like he has NEVER given more than 4 weeks and that is even rare.  This guy is THE Lyme guy in our area.

 

FWIW, there is an extreme, extreme amount of controversy between the Infectious Disease Society of America (IDSA) and ILADS.  While no one has all the answers, it seems to me that an ID doc, almost by definition, cannot be *the* lyme guy to see.

[Guest]

This is very encouraging! I needed to hear that! Did the GP write the rx?

 

My main concern is that it has taken so long to diagnose.

My DD's took a long time to diagnose as well, so that was a worry. She had severe symptoms and lyme was not considered until she had already been through numerous tests. Her pediatrician wrote the script, IIRC.

 

The biggest problem she had was that she did not do well on the doxy, also got a severe sunburn and her fingernails fell out. The photo sensitivity warning is no joke. She wore sunscreen, but still got a very severe sunburn.

[MEmama]

I really don'y know. The ID Dr today made it sound like he has NEVER given more than 4 weeks and that is even rare. This guy is THE Lyme guy in our area.

There was a ton of info on the site I linked above that you can print out and give to your doctor. If nothing else, he will then know more for his next patient, and you will be very well informed as you seek further help. Our doctor didn't know much when my son went in either, but took it upon himself to learn up on Lyme after our visit since it's so prevalent here as well.

 

The more facts you can give the doctors, the more likely they hopefully will be to give you what you demand (longer doxy rx, more testing etc). It's weird and baffling how willfully ignorant the medical community seems to be about such a serious and debilitating disease. :(

[whitestavern]

Don't you need 2 months minimum of Doxycycline if you are positive?  Now find someone else who will also give you a month's worth, and at least you have that to start.  Surely there is someone. 

 

I hope you find an LLMD. 

 

Standard is 3 weeks of doxy, and that's even in CT, where I live and it originated.

 

By the time there are associated issues you definitely need more than that; many times docs will even do IV antibiotics.

 

Please do find your closest LLMD even if it's far away. Best of luck to you.

[momto3innc]

I'll type more later if I can but quick note if you're starting now on doxy. The sun sensitivity is no joke. Like for me beyond what I could even imagine (fully covered with clothes with a hat and spf 70) and the knuckles of fingers (guess I didn't sunscreen there) blistered in about 20 minutes. And I got sun poisoning. So please be careful!!

Plus I had to eat with food.

[Selkie]

This is very encouraging!  I needed to hear that! Did the GP write the rx? 

 

My main concern is that it has taken so long to diagnose.

 

Yes, our family doctor diagnosed him and wrote the rx.  We were fortunate that he was diagnosed soon after exposure.  He had a very visible bullseye rash that developed a few days after he began feeling ill.

 

ETA:  Lyme is very common where I live.  I've known many people, dogs and horses who have had it. (In fact, one of my dogs is currently being treated with doxy because he tested positive at his checkup, despite having the Lyme vaccination.  Almost all my dogs have tested positive for it at some point.)  

 

Everyone I've known who has had Lyme has recovered fully after the standard few weeks of antibiotics.  Not to say that complications don't happen or that further treatment is never needed, but I personally have not heard of that happening in my area.  Hopefully, that will be your experience as well and the doxy will have you feeling better soon.  :001_smile:     

Edited November 12, 2016 by Selkie

[MaeFlowers]

I would recommend you start taking probiotics asap if you are not already. That long of an antibiotics cycle is hard on the system. I took plain acidophilus (refrigerated) when I was being treated and it worked well for me.

[rjand6more]

Have you contacted this group?

 

http://www.chicagolyme.com

 

I'm not in your area at all. Hopefully someone can get you local info!

 

No.  But I will.  thank you!!

[rjand6more]

I would recommend you start taking probiotics asap if you are not already. That long of an antibiotics cycle is hard on the system. I took plain acidophilus (refrigerated) when I was being treated and it worked well for me.

 

I do take a probiotic.  I hope it is strong enough.

[rjand6more]

I'll type more later if I can but quick note if you're starting now on doxy. The sun sensitivity is no joke. Like for me beyond what I could even imagine (fully covered with clothes with a hat and spf 70) and the knuckles of fingers (guess I didn't sunscreen there) blistered in about 20 minutes. And I got sun poisoning. So please be careful!!

Plus I had to eat with food.

 

I am happy that we begin to stay inside more now.  Thank you for the warning!

[rjand6more]

My DD's took a long time to diagnose as well, so that was a worry. She had severe symptoms and lyme was not considered until she had already been through numerous tests. Her pediatrician wrote the script, IIRC.

 

The biggest problem she had was that she did not do well on the doxy, also got a severe sunburn and her fingernails fell out. The photo sensitivity warning is no joke. She wore sunscreen, but still got a very severe sunburn.

 

Her fingernails fell out?  Oh my!  Did her hair fall out too?  Any other reactions I should be aware of?  I was aware of photo sensitivity.

[rjand6more]

FWIW, there is an extreme, extreme amount of controversy between the Infectious Disease Society of America (IDSA) and ILADS.  While no one has all the answers, it seems to me that an ID doc, almost by definition, cannot be *the* lyme guy to see.

 

We only have 2 ID offices in our area.  He is the only one in this practice who sees Lyme patients.  This office is where everyone who comes up positive in our area is referred to.  

[wapiti]

We only have 2 ID offices in our area.  He is the only one in this practice who sees Lyme patients.  This office is where everyone who comes up positive in our area is referred to.  

 

Of course.  ID docs are mainstream and are the only docs a typical primary care provider is going to refer to.  My point is only to be aware that there is a great divide between IDSA and ILADS.  AFAIK, the two groups typically have different recommendations.

[rjand6more]

Of course.  ID docs are mainstream and are the only docs a typical primary care provider is going to refer to.  My point is only to be aware that there is a great divide between IDSA and ILADS.  AFAIK, the two groups typically have different recommendations.

 

 

Thank you so much for making this distinction.  This is completely new to me.  I had not heard the difference.  I have so much more to learn.

[Corraleno]

My son had Lyme for 2 years before he was finally properly diagnosed. The ID specialist was utterly ignorant about Lyme, and only agreed to 4 wks of doxy. I also pointed out to him that DS's Vit D level was practically in single digits, and he brushed it off as "just a little low, that doesn't mean anything." He said if DS wasn't better after 4 weeks of doxy (he wasn't) then the only other option was aggressive IV treatment — but first DS would have to be assessed by a psychiatrist "to make sure the symptoms weren't just all in his head." I did my own research and discovered that extended treatment with doxy was often just as effective as the very aggressive and expensive IV treatment, and I was lucky that DS's pediatrician was open to trying that. He was on doxy for a total of 18 months.

[MaeFlowers]

I don't remember any sensitivity to light however I was too tired to leave the house. I would sleep 12 hours per day. A shower would wear me out to the point that I needed a nap. Doxy completely wiped me out and made me feel worse while it was working. From my understanding, this is pretty common.

 

Edited because dd came in and posted before I could finish typing.

 

Edited November 12, 2016 by MaeFlowers

[Jennay]

I can't speak to all the things, but my DD had 6 weeks of doxycycline after her Lyme Dx; her symptoms were severe. She has not had recurrent problems.

Same with my DD.

Although we also eat fermented foods regularly so she has lots of good bacteria in her system. I think that helped her not have any adverse reactions to the doxy. She also took some quality probiotics and Florastor.

[MEmama]

Her fingernails fell out? Oh my! Did her hair fall out too? Any other reactions I should be aware of? I was aware of photo sensitivity.

My DS took it during the winter, a year after exposure, and luckily didn't have any photosensitive reactions. However, winter sunlight is weak where we live so he kind of lucked out with the timing.

 

I took doxy for a different reason and ended up losing my sense of taste. I discontinued treatment after a few days and it took a month or more to regain all my ability to taste things properly.

 

I agree to take probiotics and/or focus on a probiotic rich diet. DS drank a lot of keifer and had no tummy issues at all. There are guidelines about dairy consumption, something like avoiding dairy for 3 (?) hours after taking the antibiotic.

[Guest]

Her fingernails fell out? Oh my! Did her hair fall out too? Any other reactions I should be aware of? I was aware of photo sensitivity.

No, hair was fine. When she got the sunburn, it looked like even her nail beds were sunburned. After that, her fingernails turned yellow and started lifting and detaching from the nail bed.

 

She had to take the doxy on a full stomach. Didn't do that one morning while we were vacationing in Canada and she threw up in the restaurant. Fun times.

[RegGuheert]

I'm very sorry about the issues OP is experiencing.  DS17 had similar experiences with Lyme but with excellent treatment, he is now doing better.

 

I saw the "Lyme Specialist " today.  He told me Chronic Lyme is make believe.

 

You are correct to put "Lyme Specialist" in quotes given what he has told you.

 

Is 4 weeks of Doxy enough to clear my body of this nasty bug?

 

No.

 

Will I ever feel the same?

 

Only if you receive proper treatment.  It does not appear that you will get that from the doctors you are currently seeing.

 

If you want to understand why your doctors had so much difficulty diagnosing your condition and why a professional MD would make such nonsensical statements as the one I quoted above, then you need to watch the Lyme documentary called "Under Our Skin":

 

Here is the trailer on Youtube:

 

 

This movie used to be free on Youtube, Amazon and Netflix, but that is no longer the case:

 

Under Our Skin Documentary on Amazon  (You may be able to watch this for free with an Add-on subscription.)

 

Under Our Skin Official website (You can also watch the film here or purchase a DVD.)

 

I will say that film *literally* saved our son's life since it explained clearly what he was dealing with and why there is so much confusion surrounding the issue.  It also directed us to the doctor who successfully treated our son, Dr. Joseph Jemsek.  He was featured in the film because his license to practice medicine was revoked in North Carolina because he was treating a "nonexistent" illness called Chronic Lyme Disease.  I knew he was the doctor for our son once I read his remarks to the North Carolina Medical Review Board.

 

:grouphug: Blessings to you for a successful treatment and recovery. Unfortunately, the treatment of Lyme Disease after the initial acute stages is not a linear path toward better health.  Rather it is a long, difficult roller coaster of both difficult and better times.  Fortunately, many people DO recover with proper treatment.

[rjand6more]

My son had Lyme for 2 years before he was finally properly diagnosed. The ID specialist was utterly ignorant about Lyme, and only agreed to 4 wks of doxy. I also pointed out to him that DS's Vit D level was practically in single digits, and he brushed it off as "just a little low, that doesn't mean anything." He said if DS wasn't better after 4 weeks of doxy (he wasn't) then the only other option was aggressive IV treatment — but first DS would have to be assessed by a psychiatrist "to make sure the symptoms weren't just all in his head." I did my own research and discovered that extended treatment with doxy was often just as effective as the very aggressive and expensive IV treatment, and I was lucky that DS's pediatrician was open to trying that. He was on doxy for a total of 18 months.

 

How did you know when to stop the doxy?

[Corraleno]

How did you know when to stop the doxy?

 

The pediatrician decided to stop it. I actually would have kept him on it a little longer if it had been up to me.

[Carol in Cal.]

Be aware that doxy has other side effects that don't effect everyone but are serious.

I tried it for ocular rosasea, and it made me extremely depressed--'it hurts to be alive' type depressed.  It happened immediately, the day after I took my first dose, and stopped the day after I stopped taking it.  Absolutely horrible.

[RegGuheert]

He said if DS wasn't better after 4 weeks of doxy (he wasn't) then the only other option was aggressive IV treatment — but first DS would have to be assessed by a psychiatrist "to make sure the symptoms weren't just all in his head." I did my own research and discovered that extended treatment with doxy was often just as effective as the very aggressive and expensive IV treatment, and I was lucky that DS's pediatrician was open to trying that. He was on doxy for a total of 18 months.

 

Your post implies there are three courses of treatment for Lyme disease:

- 4 weeks of doxycycline

- "aggressive and expensive IV treatment"

- "extended treatment with doxy"

 

I will contend that extended treatment with doxycyline (or any antibiotic) can be very dangerous.

 

My son was treated with none of these approaches, NEVER took doxycyline (and its associated sunlight sensitivity), was not on antibiotics continuously, got treated for Lyme (all three forms: nymph, spirochete and L-form) as well as babesia, bartonella and other Lyme coinfections and his treatment was also completed in 18 months.

[MEmama]

Be aware that doxy has other side effects that don't effect everyone but are serious.

I tried it for ocular rosasea, and it made me extremely depressed--'it hurts to be alive' type depressed. It happened immediately, the day after I took my first dose, and stopped the day after I stopped taking it. Absolutely horrible.

:(

 

Ugh. I had that reaction to a different antibiotic years ago. It was the worst feeling I can imagine, and to this day I'm not sure how I found the strength to get through that awful day. Like you, I stopped immediately. It was terrifying, and until then I had no idea that a reaction like that could occur.

[Harriet Vane]

I know nothing about Lyme, but I do know about probiotics. I had a life-threatening CDiff infection after taking antibiotics for a minor infection. The antibiotics stripped my system raw, allowing the superbug to take over. 

 

For anyone taking antibiotics, I strongly recommend:

 

--Florastor or some form of saccharomyces boulardii: This strain specifically targets C Diff. It's well researched and reliable.

 

--Align (which is Bifantis or Bifidobacterium infantis: This has some of the strongest research backing it and is known to be both effective and reliable.

 

--Acidophilus: Also strongly researched and known to be effective and reliable for candida.

 

If I had to pick just one, I would go with Florastor for C Diff prevention.

 

I do take all three, but I make a point to take them at different times of day. S. boulardii is never found in probiotics that contain multistrains because somehow the different strains cancel each other out. There's an actual, scientific explanation you can google for, or you can simply trust me and take Florastor on its own, not in combination with others.        :)

[Corraleno]

Your post implies there are three courses of treatment for Lyme disease:

- 4 weeks of doxycycline

- "aggressive and expensive IV treatment"

- "extended treatment with doxy"

 

I will contend that extended treatment with doxycyline (or any antibiotic) can be very dangerous.

The infectious disease specialist was the one who said those were the only two options, not me. I know not everyone reacts well to doxycyline, but it worked well for my son with zero negative side effects, not even sun sensitivity. He was also taking probiotics. It was a treatment that his pediatrician was willing to do, it was very inexpensive, and it was effective.

 

I'm glad your son found something that worked for him, too.

[Spryte]

I haven't read every reply in this thread, so forgive me if I'm repeating things.

 

You need an LLMD. Not an ID doc. There's a huge difference between the IDSA and ILADS. Both have released peer reviewed treatment guidelines. The IDSA line is that Lyme is hard to catch, easy to cure. And when you're not cured you have Post Lyme infection syndrome, or something else. And the prospects are not good. You'll have a lifetime of other diagnoses, none of which will be good. You'll learn coping strategies and maybe that will help. Maybe. Don't go there. Seriously. Find an LLMD who follows the ILADS treatment guidelines, will treat you till you are well, will treat the co-infections I'd bet you have. Google the Burrascano guidelines, to get some ideas, and then read. Watch Under Our Skin.

 

Chicago area will have some LLMDs. Find one!

 

And then PM any time you need encouragement. Treatment will hurt. It won't be fun. You'll herx. At least, if you've been sick as long as it sounds - I think you will. Power through it. Give yourself permission to be sick. But follow your LLMD's advice.

 

As I skimmed, I saw a lot of talk of doxy. It took me a lot more than doxy, usually at least two types of abx at a time. I was infected twenty years prior to diagnosis, and treatment took just under 5 years. I think I was on every Med combo out there. I'm so, so happy for those that got help quicker! And for whom it was easier!

 

Don't just take probiotics. Take s. Boulardii as well, 2 hrs apart from your abx.

 

I wish you well. It's a hard road.