The Lyme Disease Thread

[CarlaB]

Sarah, I think that's a much better idea until you are sure one way or the other.

Laurie, Rachel already had good suggestion for the appt. I don't do well with recorders, etc. I just know myself and know I would never listen to what's on it. I take notes. The first appt. is a blur because I was so sick I hardly knew what was going on. Having hubby there is a good idea.

Plus, take all your testing records there so they don't have to redo a test.

Once you get used to LN, it's not so bad. I usually just look at the Medical Questions forum, then once a day or so, I'll look at General. Once a week I'll look at Seeking Doctors .... if I'm sick and bored, I'll look at Off-topic.

[dlp252]

Do you all read on Lymenet much? That is where I got my LLMD referral, but find the forum confusing to get around.

What Lyme forum do you recommend for ease in reading a getting around. You would think with all the Lyme brainy people it would be very simple. But I did bookmark many of the links recommeded here and read a little each day.

Also the secretary told me to bring any pertinant records to the first LLMD appt.

Can you share anything to make the appointment go smoothly. I'm afraid I'm gonna be stuttering and have mental blocks while there and forget something really important.

I am taking my husband with me to be my second set of ears cuz it's like I hear everyother word and then forget all the rest

I don't read lymenet much anymore...I found all the bickering too much for me to handle, but I do go over almost every day just to see if any threads look interesting, and I'll pop into those once in a while. I also generally stick to the medical question section.

Yes, bring copies of any of your recent lab work. I also brought a list of symptoms because I can never remember ALL of them off the top of my head, and I wanted them to see the whole picture. Doctors generally zoom in on the most annoying symptoms, but I think that was one reason why not one of them could help me feel better...it's because they weren't getting the whole picture.

Taking someone with you is an excellent idea. I didn't have anyone available to go, but I definitely took notes.

I dont have too much brainfog these days...but anyone can get overwhelmed with alot of info. at once.

Yep, yep, yep!

Plus, take all your testing records there so they don't have to redo a test.

Yes, there were several tests my doctor didn't have to do because I had just had lots of testing done. Since I handed him copies of my recent thyroid tests he only needed to test for the antibodies.

[truthsearcher]

Thanks for the ideas about my first appointment.

I was just observing that on the first day of my cycle or the day before I get the big D and get fever and chills, do you all with Lyme get this too?

Sometimes I don't register a temp (It could be 98.2 and I feel like I have a fever).

I normally run a 97. something but never normal anymore.

Also how many of you are super constipated? This is why I never suspected celiac d/t the C.

I found out my gene test showed I was HDQ 1,3 subtype 3,8. maybe this is the more C gene????

I'm praying the gluten intolerance goes away once my Lyme is treated like Carla's did.

Have a nice night

Laurie

[dlp252]

Hi Laurie! Yes, I used to get D the day before and for the first day or two of the actual cycle. I don't remember if I used to get chills, seems like I did, but I can say that I certainly felt sick.

As far as temperatures...mine is consistently around 97. When I get sick and feel like I have a fever, it's actually LOWER. When I'm sick it'll drop to around 95 or 96. Haven't figured that one out yet, lol.

I'm DQ8...I DEFINITELY don't have C...well ocassionally, but it's usually D.

[truthsearcher]

Interesting Dip. Have you done any hormonal testing? I haven't gotten into hormonal testing myself but hoping treating the Lyme will help and get my plumbing going again.

I don't know how to edit but I wrote my genes down wrong. It's DQ 3,1 subtype 8,5 not what I put in my previous post. Not sure if the order matters?

It's winter here in upstate NY, We had lots of flurries and the wind was roaring here. My body just cannot handle the cold like it use to. My hands and feet never warm up. Always cold and clamy.

I put 3 layers of clothes on for bed last night and my body just wouldn't get warm. Ohhh I'm looking for Spring already

[dlp252]

Hey Laurie, yes I've had some hormonal things done. I've had the standard ones that most doctors run when they think you might be near menopause. Last year I had some testing done for thyroid and for adrenals. Just a few weeks ago I had my neurotransmitters tested, and just sent in a retest of the neurotransmitters. I've been supplementing the neurotransmitters based on the deficiencies in my testing, and I have to say that I think this has been a big part of my ongoing insomnia and fatigue issues. I'm sleeping a bit better and I don't feel that bone numbing fatigue so much.

[celiacgirls]

I have a few questions about Lyme and testing.

I'm wondering about Lyme disease for my 9 year old daughter. For more than 2 months, she has been laying around saying her head hurts and with a low grade fever (99.6 - 100.0). She has a history of migraines which were controlled by Elavil but now are not, if these are migraines. She's only been going to school 1/2 day at best, saying her head hurts too much. She doesn't play with her friends any more because she doesn't feel well.

She has 27 of the symptoms listed for Lyme.

I also remember a time 3 years ago when I wondered about Lyme for her. My mom was bitten and had the bullseye rash. She went to a different doctor than her usual who said she had Lyme and gave her antibiotics. When she went back to her regular doctor, that doctor did the antibody test and it was negative and dismissed the whole idea, thinking Lyme was rare, I guess. During this time, my daughter had something that had a circular rash around it, making me wonder about her. She and my mom were together when my mom got her bite. My daughter's rash didn't last more than a day which didn't seem to match up with my reading of Lyme. I think I called and asked the doctor and they were going to do the antibody test but since my mom's was negative, we didn't do it.

I don't remember if she had mood troubles before that but I do know 3 months later is when things started to get really bad for her. She had an accident where she hurt her back and got a concussion which started her headaches. Before that, she was dx'ed with strep throat after laying around not feeling well for a while. She never really got totally better. Then after she hurt herself, she also still had complaints about her throat and maybe had a slight fever. I just remember thinking there was something else going on that was not being addressed because of the greater issue of her back and head. Now again, she is laying around but nothing is being found.

She has some mood issues and OCD. I took her to an Environmental Physician/Psychiatrist and he did a full blood screening. He says she is sick because she has a low white blood cell count, I think. He didn't give me anything else to go on but did say we should definitely test for Lyme when I asked. He said there were 2 labs to use and one of them was Igenix. So he seems pretty well informed.

I am thinking of ordering the Complete Initial Panel from Igenix. It has the IFA, IgG and IgM Western Blots and PCR. Then I thought I would add the test for Ehrlichiosis because I read somewhere (I can't find the site any more) that it could cause low white blood cell count and high bilirubin, which she has, and that typical antibiotics used for Lyme weren't effective in this. What do you think? Are there other tests I should ask for?

Should I look for an LLMD if the test is negative to see if she should be treated anyway based on what I'm describing?

[AndreaB]

Should I look for an LLMD if the test is negative to see if she should be treated anyway based on what I'm describing?

I would be highly suspiscious of lyme for both your daughter and possibly still your mom. Usually the standard 3-4 weeks isn't enough to knock it out but it may have been ok for her since she caught it right away.

I would definately seek out a LLMD even if you have a negative test. As Carla says it's a differential diagnosis and clinical diagnosis. With her symptoms I'd be surprised if she did test negative though. The tests you want to order sound good and the doctor you saw sounds good to, to even agree with the possibility.

Another thing. My new dentist (who will be taking care of my amalgams) told me about cranial adjustments. I forget what kind of doctor does that but maybe you can find some info online about what they are called. He was talking to me about that because I went in to have a tooth extracted and that could even cause enough subtle differences to cause headaches. May be worth looking into in conjuction with the lyme.

[dlp252]

She has 27 of the symptoms listed for Lyme.

I also remember a time 3 years ago when I wondered about Lyme for her. My mom was bitten and had the bullseye rash. She went to a different doctor than her usual who said she had Lyme and gave her antibiotics. When she went back to her regular doctor, that doctor did the antibody test and it was negative and dismissed the whole idea, thinking Lyme was rare, I guess. During this time, my daughter had something that had a circular rash around it, making me wonder about her. She and my mom were together when my mom got her bite. My daughter's rash didn't last more than a day which didn't seem to match up with my reading of Lyme. I think I called and asked the doctor and they were going to do the antibody test but since my mom's was negative, we didn't do it.

I don't remember if she had mood troubles before that but I do know 3 months later is when things started to get really bad for her. She had an accident where she hurt her back and got a concussion which started her headaches. Before that, she was dx'ed with strep throat after laying around not feeling well for a while. She never really got totally better. Then after she hurt herself, she also still had complaints about her throat and maybe had a slight fever. I just remember thinking there was something else going on that was not being addressed because of the greater issue of her back and head. Now again, she is laying around but nothing is being found.

She has some mood issues and OCD. I took her to an Environmental Physician/Psychiatrist and he did a full blood screening. He says she is sick because she has a low white blood cell count, I think. He didn't give me anything else to go on but did say we should definitely test for Lyme when I asked. He said there were 2 labs to use and one of them was Igenix. So he seems pretty well informed.

I am thinking of ordering the Complete Initial Panel from Igenix. It has the IFA, IgG and IgM Western Blots and PCR. Then I thought I would add the test for Ehrlichiosis because I read somewhere (I can't find the site any more) that it could cause low white blood cell count and high bilirubin, which she has, and that typical antibiotics used for Lyme weren't effective in this. What do you think? Are there other tests I should ask for?

Should I look for an LLMD if the test is negative to see if she should be treated anyway based on what I'm describing?

Yes, I think I would at least rule out lyme, and yes, you should see a doctor who KNOWS about lyme. Most regular doctors only know what they learned in medical school which isn't necessarily correct. And, most go by the CDC standards which were never meant for diagnostic purposes. I'm glad that one that you saw at least knew about Igenix! That's a good sign, now hopefully he will know how to read it, lol.

The bolded items in your post reall stood out for me. Especially the strep throat/not feeling well thing...that's close enough to flu-like in my humble opinion, lol. That's one of the first symptoms of lyme...especially in conjunction with a rash and a known tick bite.

The good thing about a LLMD is that they will test for all kinds of things...NOT just lyme. So, in my case, they drew a lot of blood, but that blood went to all kinds of testing in addition to the western blots. So even if it's not lyme they'll be looking for other things too.

[celiacgirls]

I'll post over at the lyme board for a doctor in Texas, preferably Austin. In researching this, I saw an article about a nurse practitioner who treated Lyme and was forced out of Austin and is now in California. Unbelievable!

I have this terrible feeling that I'm about to start another uphill battle to get my daughter the help she needs. Lyme sounds even worse than celiac as far as getting the regular doctors to take it seriously and not act like I'm crazy. I don't think my husband will be too thrilled that I'm going off the mainstream path again. Hopefully my record of getting the celiac/gluten intolerance right will help.

[dlp252]

I'll post over at the lyme board for a doctor in Texas, preferably Austin. In researching this, I saw an article about a nurse practitioner who treated Lyme and was forced out of Austin and is now in California. Unbelievable!

I have this terrible feeling that I'm about to start another uphill battle to get my daughter the help she needs. Lyme sounds even worse than celiac as far as getting the regular doctors to take it seriously and not act like I'm crazy. I don't think my husband will be too thrilled that I'm going off the mainstream path again. Hopefully my record of getting the celiac/gluten intolerance right will help.

It is unbelievable, isn't it?! Yes, I believe it's just as bad if not worse than trying to find a good celiac-knowledgeable doctor.

Fortunately my family can't argue with the fact that 5 years of "mainstream" doctors did nothing to make me better and in fact I kept getting sicker and sicker, and that since incorporating the team of doctors I have now, I've seen major improvements in just the last few months.

[CarlaB]

As far as temperatures...mine is consistently around 97. When I get sick and feel like I have a fever, it's actually LOWER. When I'm sick it'll drop to around 95 or 96. Haven't figured that one out yet, lol.

My temps used to be low ... now I'm taking Armour thyroid and my temps are normal. I have a lot more energy, too.

Interesting Dip. Have you done any hormonal testing? I haven't gotten into hormonal testing myself but hoping treating the Lyme will help and get my plumbing going again.

Lyme can affect the hormones.

She has 27 of the symptoms listed for Lyme.

I took her to an Environmental Physician/Psychiatrist and he did a full blood screening. He says she is sick because she has a low white blood cell count, I think. He didn't give me anything else to go on but did say we should definitely test for Lyme when I asked. He said there were 2 labs to use and one of them was Igenix. So he seems pretty well informed.

Should I look for an LLMD if the test is negative to see if she should be treated anyway based on what I'm describing?

I think you should take her to an LLMD for evaluation. I think most people from Texas go to Missouri for treatment .... they'll be able to tell you on LN.

This psychiatrist sounds like a keeper!

Lyme sounds even worse than celiac as far as getting the regular doctors to take it seriously and not act like I'm crazy.

Yeah, it is worse. I hope your husband is supportive on this .... you might print out some articles for him .... also, Dr. B's diagnostic guidelines are a good read at www.ilads.org.

[AndreaB]

I have this terrible feeling that I'm about to start another uphill battle to get my daughter the help she needs. Lyme sounds even worse than celiac as far as getting the regular doctors to take it seriously and not act like I'm crazy. I don't think my husband will be too thrilled that I'm going off the mainstream path again. Hopefully my record of getting the celiac/gluten intolerance right will help.

It probably will be a battle unless you go to an LLMD. They are under attack from different sides and naturopaths are under attack in some areas too. That's why many LLMD's names are kept under wraps.

[celiacgirls]

This psychiatrist is a keeper. He also routinely checks for gluten intolerance.

I thought about just not mentioning that this will be somewhat alternative but if I have to go to Missouri, it will raise some questions.

I think I will do the test, see what the psychiatrist has to say, and then decide if we need to get an LLMD. I agree that is the best way to go unless she gets a positive test and this psychiatrist seems to be Lyme literate himself. I did a search on Lymenet and there is a doctor in Louisiana that serves as a consultant to your own doctor. So maybe the two of them could work together.

After years of wondering if my daughter had celiac, I did Enterolab testing and confirmed her gluten intolerance. Then my other daughter and I also tested positive and went gluten-free. Even though I felt better than ever, and my daughter's defiance and raging disappeared, my husband had such a hard time with the new diet and my dedication to avoiding all gluten, that it was the worst time in our marriage. Now, he is on board but it took a long time. I think the hardest part for him was the fact that I went against the doctors and the test results that said gluten wasn't the problem.

With that rash she had and my mom's dx as well as symptoms since then, I want an LLMD to tell me it isn't Lyme.

[confusedks]

Carla or Donna,

Random question...how long do the bull's eye rashes last?

Kassandra

[AndreaB]

I think I will do the test, see what the psychiatrist has to say, and then decide if we need to get an LLMD. I agree that is the best way to go unless she gets a positive test and this psychiatrist seems to be Lyme literate himself. I did a search on Lymenet and there is a doctor in Louisiana that serves as a consultant to your own doctor. So maybe the two of them could work together.

That sounds real good.

Maybe if need be you can have a visit with the LLMD then coordinate in between visit's with the local doctor or something like that. I assume the LLMD would need to see you once in awhile but maybe everything could be worked through the psychiatrist since the LLMD would work with him.

[dlp252]

Carla or Donna,

Random question...how long do the bull's eye rashes last?

I think it can vary, but I don't think some of them last long at all...a few days I think. Not 100% sure on this though. I just remembering people on LN saying that people should have it checked right away or take pictures (in fact that's not a bad idea even if it IS checked right away) if someone couldn't get in to see a doctor right away.

[dlp252]

I think I will do the test, see what the psychiatrist has to say, and then decide if we need to get an LLMD. I agree that is the best way to go unless she gets a positive test and this psychiatrist seems to be Lyme literate himself. I did a search on Lymenet and there is a doctor in Louisiana that serves as a consultant to your own doctor. So maybe the two of them could work together.

This sounds like a great plan. Most LLMDs don't contract with ANY insurance companies, so you generally have to pay up front and then, depending on your insurance, you get reimbursed at the "out of network" rate. This way the initial cost will be covered, and if your test IS positive, you can always make the decision for a LLMD. Come back and post your results here.

[CarlaB]

The Louisiana consultant LLMD sounds like a good idea especially if your local psychologist will work with him.

I don't know about the bullseye rash .... I never saw one.

[ShadowSwallow]

Just to summarize something from the OMG thread so this makes sense. My Mother (trying to be helpful) contacted someone whose acupuncturist put them on an herbal protocol for Lyme. Mom is advocating that we exhaust every alternative/herbal thing before we consider using abx, and I disagree for many reasons. I'm posting this to ask for information regarding some of the claims made, etc.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Here are a few websites about samento which is the primary herb that I am using ( it comes in a little bottle and I take 5 drops 3x a day).

I am also taking a "HCL" hydrocloric acid supplement and "activator" a detox supplement.

I also have stomach problems ( ulcer at 30 and acid reflux). I am on full dose of the samento and other suppliments and doing ok with it. My acupunturist stresses eating the whole food diet also to aid in healing. It is hard giving up sugar, dairy, caffine... but necessary. I also try to keep my wheat intake at a minimun because it is acid forming.

I am also taking a green supplement to help with getting enough veggies in me a day.

I did not want to go on long term antibiotics because they can leave you with more problems.

I have a brother who has had lyme 3x and I think he never got rid of it because the doctors don't keep people on the meds long enough to totally get rid of it.

Probably they couldn't tolerate the antibiotics for too long. The samento doesn't have any side effects except "detox reactions" which can and probably will happen to me when I will get a flare up of sypmtoms as my body is getting rid of a die off of the organism.

I also read that you may have to be on the this for 8-12 months to be sure you get the bug at each stage of development. Also the natural route may take longer for results. My acupuncturist said 1-4 months. With the antibiotics it may only take a couple of weeks.

I agree the longer but natural route has more potential for completely eradicating the lyme.

hope this helps. Let me know if you have any more questions.

The line in italic is the one comment of Mom's that I left in the email. I'm not quite sure where to start with commenting on this as quite a few things seem "off" to me.

Also, the argument my naturopath has against abx is that it does not kill the existing bacteria, it only keeps it from reproducing. Is this really true?

Birdy

[happygirl]

No. There are bacteriostatic and bactericidal antibiotics. Some suppress/prevent replication, some kill, some have both properties.

[CarlaB]

Some abx are bacteriostatic (keep it from reproducing) ... some are bactericidal (kill it) ... but bacteria is only killed when it's replicating.

It is true that if you don't stay on the abx long enough that it will not get rid of the Lyme and it can relapse.

It is not true that a couple weeks will cure you with abx.

Samento is an herb that is used successfully in Lyme treatment. I take it. I also take parsley, burbur and will be starting cumanda. These are part of the Cowden protocol that is available at www.nutramedix.com. I take these herbs in ADDITION to the abx.

I think that what she is saying about nutritional support and strengthening your body and immune system is valid. I truly don't think you can heal from Lyme just by taking drugs.

However, my LLMD is of the opinion, and he is a holistic doctor, that abx are needed when the bacterial load is high. At some point he will use the Cowden protocol to get me off abx and keep me in remission.

Lyme is a complicated disease and requires someone who knows all the little details about helping you heal from it ..... they need to know about coinfections, heavy metal toxicity, etc. Many LLMD's (seems like most) are also into holistic medicine and use it in conjunction with conventional medicine.

[ShadowSwallow]

happygirl,

Thank you for the clarification!

It is true that if you don't stay on the abx long enough that it will not get rid of the Lyme and it can relapse.

Right, the thing I'm worrying about is that she's taking that to mean that abx really doesn't. Probably me overreacting, but in response to the section where she says, "I did not want to go on long term antibiotics because they can leave you with more problems." Mom responded (I didn't put this in the original post), "I agree. I am hoping she can recover from through natural means."

Samento is an herb that is used successfully in Lyme treatment. I take it. I also take parsley, burbur and will be starting cumanda. These are part of the Cowden protocol that is available at www.nutramedix.com. I take these herbs in ADDITION to the abx.

I think that what she is saying about nutritional support and strengthening your body and immune system is valid. I truly don't think you can heal from Lyme just by taking drugs.

However, my LLMD is of the opinion, and he is a holistic doctor, that abx are needed when the bacterial load is high. At some point he will use the Cowden protocol to get me off abx and keep me in remission.

I'll be looking into that more, and bring it up at my next appointment. Also ask the nurse about it when I call her.

Lyme is a complicated disease and requires someone who knows all the little details about helping you heal from it ..... they need to know about coinfections, heavy metal toxicity, etc. Many LLMD's (seems like most) are also into holistic medicine and use it in conjunction with conventional medicine.

Yes, the naturopath that Mom's wants to pursue treatment with first had never heard of Lyme coinfections, and I had to explain what a herx was to her. And yet I'm frustrated that Mom doesn't see a problem with that, because she herself knows so little about Lyme (just found out today that she didn't know it was a bacteria ). I'm becoming very frustrated since my symptoms are getting worse and it's like we're just sitting around doing nothing about the elephant in the room.

[mftnchn]

I'm afraid I'm gonna be stuttering and have mental blocks while there and forget something really important.

Hi, I have developed a written reporting that I take to my LLMD every time, or send by email before my phone appointment. I start by listing all my medications and supplements. Then I have a section in bold with the details under so it is easy for him to find a particular topic. So I might have a section on medication adjustments and responses, joints/muscle pain, digestive issues, hormones, etc. When I have an appointment in person, I take a copy for him and one for me. I take notes at the bottom and back of that sheet.

It is true that if you don't stay on the abx long enough that it will not get rid of the Lyme and it can relapse.

It is not true that a couple weeks will cure you with abx.

Samento ....I take these herbs in ADDITION to the abx.

I think that what she is saying about nutritional support and strengthening your body and immune system is valid. I truly don't think you can heal from Lyme just by taking drugs.

Lyme is a complicated disease and requires someone who knows all the little details about helping you heal from it ..... they need to know about coinfections, heavy metal toxicity, etc. Many LLMD's (seems like most) are also into holistic medicine and use it in conjunction with conventional medicine.

I agree with everything Carla said. 2 weeks on abx is not enough, especially if you have had lyme longer than a month. It took my 8 months on abx to see improvement during initial treatment.

I also take samento in addition to the abx, also transfer factor specific for lyme. Samento is what I attribute to getting me over the hump when I plateaued on abx treatment. But I wouldn't depend on it solely for treatment.

My sense is that you need someone like Carla describes who also will adjust his/her approach for your body and specific issues. There are some people who cannot tolerate abx, and for whom an herbal approach is the only way.

Many years ago my allergist told me, "If it helps one person, it is worth taking a look at." So I think the herbal options and your friend's responses to it are worth considering, but it isn't the only thing to consider. You have an uphill road educating adults who don't see you in a peer relationship with equal contribution to the decision. That's hard.

[CarlaB]

Right, the thing I'm worrying about is that she's taking that to mean that abx really doesn't. Probably me overreacting, but in response to the section where she says, "I did not want to go on long term antibiotics because they can leave you with more problems." Mom responded (I didn't put this in the original post), "I agree. I am hoping she can recover from through natural means."

It is true that abx have a risk. I would have liked to have gotten over it with natural means, too, but it didn't happen that way. It's a nice thought.

The risk of the treatment has to be weighed against the risk of not treating. Which is the greater risk? To me, letting the Lyme just take over is the bigger risk.

You are in a bad spot like Sherry mentioned since you are not being treated like a peer and decisions are being made without your input. You might try to compromise. Tell her that you will try herbs for a certain time period. I would look into the Full Cowden Protocol. It has proven to be effective .... my LLMD has had good results with it. Samento is part of this protocol but that Samento alone will not work.

Not only is Lyme a bacteria, but it has three forms all three of which require different treatments. Remind your mom that the person she is talking to is NOT healed!

The thing is, Dr. Cowden uses LED treatment with his protocol ... so it would be ideal to find someone who will do this.

I would also want to be tested for heavy metal toxicity because many with Lyme have heavy metals and it's part of the treatment when you go through an LLMD.

Make a deal with how long you will stay on the natural protocol only and at what point you will see a Lyme specialist. Call the LLMD a "Lyme specialist" as that terminology will work in your favor in the long run. If she gets the idea of how complicated Lyme is, maybe she will see the need for a specialist.

I think that on the protocol I just described that you will make progress, so it won't be lost time.

Yes, the naturopath that Mom's wants to pursue treatment with first had never heard of Lyme coinfections, and I had to explain what a herx was to her. And yet I'm frustrated that Mom doesn't see a problem with that, because she herself knows so little about Lyme (just found out today that she didn't know it was a bacteria ). I'm becoming very frustrated since my symptoms are getting worse and it's like we're just sitting around doing nothing about the elephant in the room.

Ugh. I'm so frustrated with this myself.