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CarlaB

The Lyme Disease Thread

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Just wanted to say hi susieg.

I'm from Upstate western NY. Lyme is big here. Vets are dx'ing more and more cases of Lyme in this area than ever before in cats and dogs.

My LLMD believes I've had Lyme sence I was 5yo. I'm 36 now, and misdiagnosed with Fibro/CFS for nine years.

If you are anywhere close to me we have a awesome support group that meets in Victor, NY. Let me know if you need any info.

I pray you find the answers to all your health questions.

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My 6 year old son had Lyme this summer. His first symptom was speech regression, he couldn't say any "r" sounds whenhe had previously. When I took him to the MD, he suggestedit might be ear infections, hehad no history of this and normal speech development. I mentioned a deer tick point at this point, as another issue, I didn't make the connection yet, but he said watch for the bulls eye rash and joint pain. Went back a month later, no improvement, MD said to "wait until September if might go away." I also described at this appointment a ful body trunk rash that had occured over the weekend, WE did have photographs, he suggested it was reaction to sunscreen. We went to an ENT next, todl me all that was clear, suggested that he was doingit for attention. By this point, he was also lethargic, and spednign a lot of time layig behind a chair lookign at comic books. Next, we went to speech therapist. He couldn't stick his tongue out straight, she didn't want to scare me, but suggested we see a neurologist to rule out things. I could have kissed her for taking me seriously. Then, in casual conversation with some MD friends, I described the speech therapist visit, they immediately, told me to have him tested for Lyme. thsi time I called the MD, and asked for the test, he called it in to make me feel better. My this time, we also had constant stomach aches, low grade fever and weight loss. His titer was positive, he got put on 3 weeks of amox. I called and asked for doxy, and said it was neuorological, look at the speech issues, again was told they were unrelated. Asked for a referal to an ID specialist. he wouldn't give me one. Said, "we dont' know that it's really Lyme yet, wait for the western blot. Whenthey came back a few days later he had 8 bars (CDC report level is only 5). Then, a few weeks later, we saw a ped. Id specialist, who told me that 3 weeks of amox was enough. His fevers had stopped at this point, but his speech was still bad, he was still tired, thin adn hiding from daylight. Finally we saw a ped Neurologist, he started to tell me thsi was unusual adn dint' seem related. I lost it, shared my research, and asked for help. he sais he had to do his own first. Then I saw a local Id specialist, It was mdi August at this point, she again, after looking at his file (he also had an MRI in there which showed on irregular white spot) said, she knew I probably didnt' want to hear this, but she'd liek to consider IV treatment, again, I could have kissed her. It still took 2 more weeks to get treatment started, but within 2 days of the IV his speech started to improve, he started to eat again, it was great. Then on day 10 of treatment, he got dizzy, tight inteh chest, full body rash, reaction to the antibiotics, we had to stop treatment and pull the line. The ID doc, said it was probably enough. WE than went back to the speech therapist, who was thrilled with his progress and shocked by my story.

He was just discharged from speech a few weeks ago, but here is where we need help, he still hasn't gained all the weight back that he lost. I have Celiac, and probably my 3 year old as well, we just took him of gluten 2 weeks ago.Minimal weight gain so far, but he does seem to have more energy and lighter circles under his eyes. I had been planning on taking the whole family off over the summer as a trial, but the above, made me drop that plan as we were already pretty overwhelmed (plus the 3 year old broke her leg in July). Anyone else have trouble regaingin weight lost or develop gluten intolerance after Lyme? he was tested for Celiac 3 years agao when I was diagnosed but was negative. Any other suggestions for supplements or ideas would be great.

Patty

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Patty, you need to take your son to see a Lyme specialist -- LLMD. Lyme docs will treat until symptom-free. ID doctors typically have their head in the sand when it comes to Lyme treatment.

I did not gain my weight back until I was treated for Lyme and the coinfections for many months.

I understand he was on 3 weeks of abx, plus 10 days of IV? That is most likely not enough. I have been in treatment for 15 months myself.

I would get him to an LLMD ASAP.

If you go to lymenet (.org) and post under seeking doctors, someone will send you the number for Dr. J in CT, that's who you want to see for your son. He's the world's foremost Lyme pediatrician.

Edit to add -- google herxheimer reaction. It sounds like that is what the reaction your son had to the abx most likely is. If his symptoms worsened on abx, it's not a reaction to the abx, but rather a reaction to the die off of the bacteria.

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Hello all

I just came home from my appt a few minutes ago and it went REALLY well. She actually suggested Lyme when I showed her the scars on my chest. They were sent to a traditional lab, but I figured I'd let her do that and if nothing else comes back, I'll suggest another lab. She is european, and I have decided that they tend to be treat health care a little differently. Not once did she suggest any sort of pill to make it go away.

She said that we had to figure this out because I was much too young to not feel great, and even if she couldn't figure it out, she would work with someone who could. I also told her about my problems with gluten, and she really thinks that that even though the test was negative, after she heard my symptoms and how much better I am doing off the gluten, that Celiac is a definite possibility. She said she wasn't sure how accurate the tests really were.

But I actually feel like I have a bit of hope. She sounded so committed to finding the cause of what was making me feel bad. It was amazing.

Anyway, thanks for all of your help and I'll keep you up to date. Hope to hear the lab results this week and then go from there. This forum is TRULY knowledgable... everything I said she agreed with and told me I had done most of the hard part myself.

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Just wanted to say hi susieg.

I'm from Upstate western NY. Lyme is big here. Vets are dx'ing more and more cases of Lyme in this area than ever before in cats and dogs.

My LLMD believes I've had Lyme sence I was 5yo. I'm 36 now, and misdiagnosed with Fibro/CFS for nine years.

If you are anywhere close to me we have a awesome support group that meets in Victor, NY. Let me know if you need any info.

I pray you find the answers to all your health questions.

I live on keuka lake very close to Victor. I was wondering how big Lyme was around here and thought of contacting local public health. how can LLMD determine possibility of Lyme that long ago? I got this weird rash raised bumps very itchy at about thirteen years of age. It is a reaccuring rash that was dxed as shingles a few yrs ago. I have assumed it is DH associated with celiac as I felt 13 was too young for shingles!! I am self diagnosed celiac with support from my PCP as it fits my symptoms so well and I do better on gluten-free diet, though still struggle with muscle pain joint swelling that flare unrelated to diet as I am very diligent. Have yet to have positive labs to confirm celiac. If you live near Victor did you find it hard to get Dr to listen? Thanks for your help. when does support group meet?

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Lizard, that is great news! I hope you get clear answers from the tests she ran. Did she run a Western Blot? That is the one you need ... not as good done by a local lab, but some actually get a positive once in a while, so definitely worth a try. It's also good she'll work with another doctor. Dr. J, from what I've been told, works in conjunction with your local doctor. Might be a great team for you.

Susie, I've had Lyme since I was 10, so it's a possibility for you after all these years! I live in a place that is "no risk" yet I know 7 people here with Lyme ... and I'm sure I don't know every Lyme patient in the area! None of us were reported to the CDC .... I emailed the CDC to report my doctor for not reporting my case, and they didn't care at all that it wasn't reported.

Every state has Lyme. Though living in an endemic area makes it more likely, there are plenty of us who have it who live in "no risk" areas as well. New York is a high risk area.

I get wacky rashes that I originally thought might be DH myself. In fact, there are posts on some threads on the forum from a couple years ago of me asking what people thought my itchy scalp rash was!

Please pursue getting checked out for this. :)

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Lizard, that is great news! I hope you get clear answers from the tests she ran. Did she run a Western Blot? That is the one you need ... not as good done by a local lab, but some actually get a positive once in a while, so definitely worth a try. It's also good she'll work with another doctor. Dr. J, from what I've been told, works in conjunction with your local doctor. Might be a great team for you.

I believe she only did the Lyme titers. Like I said, she openly questioned the results of the Celiac test and wants me to pursue that further, so, if the Lyme comes back inconclusive, I believe she would be open to using a different test and lab. But my first time in there with all of this, I wanted to develop a rapport with her and not second guess her blood tests. She knows I do a lot of research, so it's something I could come back with and say, "while I was looking, I found this..."

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Lizard, that is great news! I hope you get clear answers from the tests she ran. Did she run a Western Blot? That is the one you need ... not as good done by a local lab, but some actually get a positive once in a while, so definitely worth a try. It's also good she'll work with another doctor. Dr. J, from what I've been told, works in conjunction with your local doctor. Might be a great team for you.

Susie, I've had Lyme since I was 10, so it's a possibility for you after all these years! I live in a place that is "no risk" yet I know 7 people here with Lyme ... and I'm sure I don't know every Lyme patient in the area! None of us were reported to the CDC .... I emailed the CDC to report my doctor for not reporting my case, and they didn't care at all that it wasn't reported.

Every state has Lyme. Though living in an endemic area makes it more likely, there are plenty of us who have it who live in "no risk" areas as well. New York is a high risk area.

I get wacky rashes that I originally thought might be DH myself. In fact, there are posts on some threads on the forum from a couple years ago of me asking what people thought my itchy scalp rash was!

Please pursue getting checked out for this. :)

After reading more on this topic I am taking your advice and have appt with PCP tomarrow. Hope she is progressive enouh to consider the possibility of Lyme! will post her reaction to my concerns. Thanks again Carla!!

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Lizard, I'm so happy to hear you making progress with your Dr. Great Work! Keep us posted.

Patty,

I agree with Carla, get your son to a LLMD. I hear Dr. J in Conn is the best. My son also has speech issues. Stuttering that comes and goes , now gets stuck and can't think of a word. It totally frustrates him because it could be a very simple word but he just can't get it out no matter how hard he tries. His Western blot showed band 30,41 45, and 58 positive, the rest were negative. We haven't done anything as of yet.

Susie,

Hi neighbor. I'll pm the time and location for our next support group meeting. It's actually in Farmington this month, so it'll be 15 min closer to you! and a little farther for me.

I hope your Dr. apt goes well tomorrow.

Yes I've found it impossible for Dr.s to listen here. Even the only holistic Dr. in the area did not know how to read the Western blot. There is one Dr. here that does acknowledge lyme but she does not accept new patients. I tried to get in but to no avail. I travel south of Albany to see my LLMD.

My llmd beleives I've had Lyme sence I was 5 because that's when I had Cat Scratch Fever which is Bartonella, a co- infection of Lyme. I had a very bad case and had to have my lymph under my arms cut and drained and sutured. I then developed a droopy eye that lasted for several years but got better. I also had learning problems and basically ADD by todays standards so... all this was a piece of my puzzle that added to my adult health problems.

I'm 7 weeks into treatment and just starting to notice a lessoning of just about all of my symptoms yeah!!!

I haven't really herxed much, KNOCK on Wood. :lol:

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Lizard, I'm so happy to hear you making progress with your Dr. Great Work! Keep us posted.

Patty,

I agree with Carla, get your son to a LLMD. I hear Dr. J in Conn is the best. My son also has speech issues. Stuttering that comes and goes , now gets stuck and can't think of a word. It totally frustrates him because it could be a very simple word but he just can't get it out no matter how hard he tries. His Western blot showed band 30,41 45, and 58 positive, the rest were negative. We haven't done anything as of yet.

Susie,

Hi neighbor. I'll pm the time and location for our next support group meeting. It's actually in Farmington this month, so it'll be 15 min closer to you! and a little farther for me.

I hope your Dr. apt goes well tomorrow.

Yes I've found it impossible for Dr.s to listen here. Even the only holistic Dr. in the area did not know how to read the Western blot. There is one Dr. here that does acknowledge lyme but she does not accept new patients. I tried to get in but to no avail. I travel south of Albany to see my LLMD.

My llmd beleives I've had Lyme sence I was 5 because that's when I had Cat Scratch Fever which is Bartonella, a co- infection of Lyme. I had a very bad case and had to have my lymph under my arms cut and drained and sutured. I then developed a droopy eye that lasted for several years but got better. I also had learning problems and basically ADD by todays standards so... all this was a piece of my puzzle that added to my adult health problems.

I'm 7 weeks into treatment and just starting to notice a lessoning of just about all of my symptoms yeah!!!

I haven't really herxed much, KNOCK on Wood. :lol:

Laurie,

Hi neighbor. Great news on your recovery!!! My appt did not go well as expected...

Dr said lyme was a possible DX but unlikely as there is no lyme disease in the area and would be more likely if I lived in Jersey. She is sending me to Rheumatologist at Strong and says they can check for Lyme with blood test. She is either clueless or not prepared to get involved in the lyme controversy. I don't know what to do now. Maybe call Dr. H in Hyde Park?

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Susie,

Don't be discouraged. I expected that this would happen. It's happened to me multiple times and sometimes it wasn't so pretty. I had one Dr. tell me that my fibro was not curable and I needed drugs for the rest of my life, and that diet would have no bearing on my recovery. He wouldn't even offer the standard lyme test.

Lyme is in NY. All one needs to do is look on the CDC map for lyme to see. Vets in the area are diagnosing higher numbers of animals with lyme. I just went to the vet the other day for some flea stuff and I asked and they said they had several cases of lyme last year, but none yet this year.

You will find no sympathy or expertise at Strong hospital. They deny it is here. IMO I wouldn't go and waste my time or money. I'd go straight to a llmd. I've run around in circles for 9 years trying to find answers and now well on my way to recovery.

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Dr said lyme was a possible DX but unlikely as there is no lyme disease in the area and would be more likely if I lived in Jersey.

Yeah right?????? and if you lived in NJ, the Dr. would say there no lyme in NJ, it's more likely if you lived in NY. Duh????? Clueless I say. <_<

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Yeah right?????? and if you lived in NJ, the Dr. would say there no lyme in NJ, it's more likely if you lived in NY. Duh????? Clueless I say. <_<

I AGREE!!!

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Yeah, well, there's REALLY no Lyme in Ohio! Even the CDC says so! Well, at least for my area .... LOL It's pathetic.

I'd see Dr. H. You'll get an appt. with a PA, but you still get to see him, too. He does comprehensive testing to rule out everything .... he even tests routinely for celiac disease! He doesn't want to diagnose you with Lyme if you don't have it ..... so you get tested for everything all at once! No more of this ruling out one thing at a time.

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Yeah, well, there's REALLY no Lyme in Ohio! Even the CDC says so! Well, at least for my area .... LOL It's pathetic.

I'd see Dr. H. You'll get an appt. with a PA, but you still get to see him, too. He does comprehensive testing to rule out everything .... he even tests routinely for celiac disease! He doesn't want to diagnose you with Lyme if you don't have it ..... so you get tested for everything all at once! No more of this ruling out one thing at a time.

Thats a relief!! It seems like all the Dr.s are on a hunting expedition with no idea what the prey is!! I am concerned about ther cost of seeing Dr. H and if my insurance will cover any of this. My research indicates that Lyme testing and treatment is really expensive!! With all this testing that Dr. H does will the trip be more than one day? I am only six hrs away but fiance will need to take time off from work (unpaid as he is a union electrician with health insurance but no paid time off) and I will need to make some sort of arrangements for my ten yr old daughter. I don't know how you can manage your flights, accomodations, and treatments.

Although there is no Lyme in NY truthseeker tells me of a support group less than one hr. away for Lyme that 8-20 people regularly attend!!! Must be they all went to New Jersey and contracted Lyme LOL!!!

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The appt. should take about three hours. It will not require more than one day for the appt. as some of the testing can be done at home (heavy metals, adrenals, etc.) and sent in. The rest is blood work. It's not cheap, but if you think about it, with having it all done at one time by one doctor, even if you pay out of pocket, it's going to be cheaper in the long run when you consider days missed from work for appts. and illness .... cost of getting worse from misdiangosis, etc.

Fortunately, my hubby has had a couple good years in sales ..... unfortunately, we're spending it all on my healthcare.

When you get to that support group meeting, you'll have to ask them all whether they went to CT or NJ to get their Lyme. :blink:

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I am concerned about ther cost of seeing Dr. H and if my insurance will cover any of this.

....

I don't know how you can manage your flights, accomodations, and treatments.

I went through the same thing...the worry that we wouldn't be able to afford my treatment, etc. For me, I didn't want to live much longer if we couldn't figure out what was wrong. Yes, money is tight, but I was too sick to not at least attempt to get treatment. (If that makes sense! :huh: )

Insurance might cover them as an out of network provider...but most LLMD's don't send anything to insurance companies. You have to do that on your own. And, a lot of the lab work *should* be covered. Same with medications... most should be covered.

If I were you, I'd get his opinion and take it from there. If you realize you can't afford it, then you can try to figure out ways to make things more affordable.

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I went through the same thing...the worry that we wouldn't be able to afford my treatment, etc. For me, I didn't want to live much longer if we couldn't figure out what was wrong. Yes, money is tight, but I was too sick to not at least attempt to get treatment. (If that makes sense! :huh: )

Insurance might cover them as an out of network provider...but most LLMD's don't send anything to insurance companies. You have to do that on your own. And, a lot of the lab work *should* be covered. Same with medications... most should be covered.

If I were you, I'd get his opinion and take it from there. If you realize you can't afford it, then you can try to figure out ways to make things more affordable.

Thank you Carla and Kassandra for your insights. I don't know how I will afford this but need to try as my quality of life has deteriorated as my health has worsened. I was listing all the "weird" symptoms that I experience and came up with 25 currently unexplained health issues. Everything from left eye ptosis to pain and swelling in left thumb joint to unexplained skin rashes and extreme fatigue..... and on and on. I do not have a job am a stay-at-home Mom and would love to be healthy enough to work part-time so I guess if Dr. H can help me then I should consider it an investment in my future earnings capability. Just having the desire to do the things that I used to love like read a book would make this a cost effective venture. Thanks again for your support and encouragement girls!!!

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Hi Susie

It really is worth it tho it is expensive. I don't know how much you already have invested in your health, but I have spent 10 years of my life searching, spending tons of money for treatments that never lasted.

Seeing Chiros, Accupuncture, GI Drs, Orthopedic Drs. Holistic Drs. Naturalpaths, cranial, and osteopathic treatments, tmj specialists, the list really goes on and on. Trying all kinds of diets yada yada yada

The past two weeks have been about the best days I've had in 10 years. My energy has returned and I can read a childrens book to my kids. I worked outside today getting ready for the garden, and ran a couple errands and I was not totally wiped out. I don't have anxiety 24/7 anymore and I don't have those severe mood swings anymore.

I'm not 100% yet but I'm getting there. Oh how I wished I had found my llmd 10 years ago. I could have had fond memories of early motherhood, and saved some money for something other than Drs.

I'm spending now but hopefully not for long.

Check with your insurance. My ins paid for lab fees, and a good portion of scripts. Malarone was my most expensive at 50 bucks, and everything else is 5 bucks.

We travel 5 1/2 hours by car to see Dr. H. It really isn't that bad. Hubby and I get a chance to be alone, except the last time my 4yo came cuz she was a little sick and couldn't leave her. She had a ball. We stayed in a nearby hotel at 80 bucks a night.

I know others who travel all in one day and do fine.

I do a phone consult next month so we don't have to fork out for that.

If you have any other specific questions please feel free to pm me.

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Guest LittleMissAllergy

I posted a separate thread on lyme disease because I was just diagnosed (kind of, you know how hard it is to diagnose...) but no one replied, then I went searching and found this. Hope you don't mind me posting without reading it all, but I'm just so exhausted and overwhelmed, and could only get through the first 5(ish) pages of the thread. I have so many questions and concerns, I didn't know where to look. I've been on all the websites that list symptoms and treatment, but they don't really help. I guess I just wanted to hear from some others who've been down this road....I think I need to hear a success story. Haha...but anyways, I know you don't know much about me so it'll kind of be hard to help, but I just wanted to see if you all are still here because it just helps to come in contact with people who have done all of this before....

Thank you....

I hope you all are well, and out living life...

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Welcome LittleMiss! Yeah, I've certainly been overwhelmed in the last year or two, so I understand the feeling! I can't read more than a couple of paragraphs without my eyes crossing...literally! My brain stops functioning after that, lol.

We're all still here, so go ahead and post any questions that you have.

It's been a long frustrating road for many of us, but there really is hope. I haven't started any aggressive treatment at all yet (doctor does not think my body can handle the antibiotics), so I've basically just been supplementing and doing herbal things, and I actually DO feel better than I did a year ago at this time.

I was diagnosed 1 year ago this week. :)

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Guest LittleMissAllergy

Thank you so much for replying. It sounds like you're stable and on the road to recovery, which is great to hear.

Honestly, I'm just kind of scared right now. Being in my first "lyme flare", the symptoms are to intense and it just feels like it's never going to end. The shortness of breath, the feeling like my throat is swelling and my neck is tensing in the throat region, the itching deep in the throat and in my ears, the heart palpitations, enlarged spleen...it's all so scary. Did anyone experience ANY of that?

I guess just laying here being so sick, and knowing that the doctor just needs me to ride it out, my mind is going in like a million directions thinking that there may be something we're missing.

I guess I just need to hear stories, or for people to relate :) I'm so glad I found you guys...

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Hi LMA,

I can totally relate. I have 3 little ones to care for with Lyme, it's not fun.

I have had many of the symptoms you have including a enlarged spleenic artery.

I hope you are able to get the best of care with a LLMD. I went far too long without one. I am now on the road to recovery. On abx 2 months and feeling tons better but a ways to go yet.

Take Care

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I've had some of those symptoms...significantly better is the air hunger and heart palpitations. I actually haven't had that one in a long time now. I must admit that I have not had to live through a bad herx yet...my doctor is taking it so slowly with me that I have yet to experience that until the last few weeks. I got a nasty, evil hybrid cold/flu thing and that caused me to take a couple of steps backwards. The old extreme exhaustion returned along with a couple of other annoying symptoms. Those are finally getting better!

I see my LLMD today and I'm hoping he thinks I'm ready to do a provoked challenge for metals...we'll see, lol.

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Honestly, I'm just kind of scared right now. Being in my first "lyme flare", the symptoms are to intense and it just feels like it's never going to end. The shortness of breath, the feeling like my throat is swelling and my neck is tensing in the throat region, the itching deep in the throat and in my ears, the heart palpitations, enlarged spleen...it's all so scary. Did anyone experience ANY of that?

I can so relate to EVERY one of your symptoms. The spleen issue is a big one for me right now. It's really enlarged and tender...and we checked, it's not mono.

I'm only 5 months into treatment, and I have made some progress, but not as much as I'd like...at all! I'm going to talk to my Dr about different abx/more aggressive abx because I have just plateaued.

My first herx was the scariest thing EVER! I thought I was going to die! You will make it through though!! :) We are here for you if you need us!

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