just diagnosed

[Sanlizzie]

My friend was recently dx'd with LD. It's very possible that she has had this for more than 6 yrs. The doxy made her violently ill so it was dc'd. Then she was put on Amoxicillin for 2-3 weeks. All the symptoms are still here, worsening, etc. She is currently seeing a natural herb doc and eliminating sugar from her diet in order to kill off the yeast. Then she plans on seeing a specialist and hopefully her body will be more receptive to an antiboitic regime. She has an appt with a specialist in early May. Is this the best way of treatment? I heard that doxy was for early lyme disease, so we are assuming that there is something stronger? This has been going on for a LONG time . I have sent her the link to brainchat, so she can post things herself. I am normally on the Epilepsy board. Just in here to ask those 2 questions and I hope that someone has some pointers for us. :confused: ~Sanlizzie

[lymebytes]

Hi Sanlizzie. It is nice of you to help your friend.

Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

Do you know what does of Doxy she was given? What kind of reaction did she have? You can get very nauseous if you take Doxy without eating something substantial (and non-dairy) before taking it. What dose of Amoxicillin is she taking?

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

There are several different meds that can treat tick-borne illnesses. Which med is best for her depends on several factors including how long she has been sick, the kind of symptoms she has, if she has co-infections, if other medical problems are present, etc. Doxy is often prescribed first because it can be effective against Lyme and some of the co-infections.

Do you know which doctor she will be seeing? You can use initials only. If she needs a recommendation, you can email me at ko_@bellsouth.net I also have a good list of resources I can email.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Tell your friend that good help is available, and she is not alone. It can take time, but with proper treatment she can get better.

[Sanlizzie]

Wow! I'm going to talk to my friend and read her what you wrote. Thankyou so much for all the information. She has really been mis-treated, if you know what I mean. She went to regular dr who was good because she diagnosed her. But after that, things went downhill. My little friend is young and was somewhat overwhelmed by the dx. She was only on Doxy for 2 days, as she was vomiting so much, they took her off. Then whoever was filling in at the office (this is just an MD), said she would call her in some Amoxicillin. I think she took this for about 3 weeks, then that was THAT. No follow-up bloodwork, no next appt, nothing! I sort of made her, ummm forced her, to call the dr for a referral to a specialist. She's not used to having to "play hard" with a doctor. I'm old enoughto be her mom, so I can have some influence! I'm trying to prepare her a list of questions to bring with her to her first appt with someone who knows anything. This will be in May. I looked over that list of symptoms and she has so many. She is worried that she can't get rid of it , and possibly others, cause she has had it for so long. Can they really tell how long a person has had it? She suspects she's had it for 6 yrs, as that's about how long her symptoms have been going on.
She has had tons of trouble with IBS for yrs, or now we probably think something caused from the LD. She is trying now to change her eating habits, but cutting out added sugars, refined sugars and lots of the carbs. This is what the naturpath said to do. She will rid her body of the yeast and possibly then she will have a better response to antibiotics. Have y ou ever heard of that? I'm sorry to have so many questions. I sent her the link to join here tonight. I hope to see her sign in , probably tomorrow....Again, thank you so much.
ps- WE are (i think) farther north than you. NH and VT But she is seeing the specialist minutes outside of Boston. I don't know the name, or initals. This dr is under the title of infectious diseases. Does that sound right to you? We were a little surprised, I guess all the terminology can be sort of overwhelming too?? :rolleyes: ~Sanlizzie

[lymebytes]

Hi Sanlizzie, I am happy to help.

Unfortunately, it is often difficult for people with tick-borne illnesses to get properly diagnosed.

It could be that your friend did not eat enough when she took the Doxy. It can cause severe nausea and vomiting if you do not eat something substantial before taking it.

If she is going to see Dr. D. in Boston, I definitely do not recommend him. There is an excellent Lyme doctor in CT and a couple in NY. If you would like their names, let me know.

Many people who have Lyme benefit from eliminating sugar and processed carbs from the diet. I suggest reading Dr. Burrascano's recommendations under "Supportive Therapy" starting on page 25 at http://www.ilads.org/burrascano_0905.html

[6t5frlane]

I might suggest going over to Lymenet.org. Many ? can be answered there

[Sanlizzie]

MY friend is very overwhelmed at the moment. No one knew about co-infections till we started reading things here and on lymenet.org. I hope that when she gets "ready" she will post in here her questions or concerns. I do believe that the dr she was planning on seeing is that one that you don't like from Boston. She has waited a long time to get that appt and she was devastated to think that he might not be what she needs....not sure here. I think that she is planning on keeping that appt and I am going to try to prepare her with a list of questions to bring.
About the Doxy....She was told by the "not so knowlegable" first dr to take it on and empty stomach. So that might be why she could'nt take it. She never kept any of it down.Lasted about 2-3 days. Then they put her on the amoxicillin for 14 days. (500 mgs, 3x a day) That was a very small dose, compared to what most lyme docs prescribe. She vomited most of that up as well..... Her stomach has been sick for years.
Plus I also found out that her computer is not working right. I plan to visit her soon and I will try to get her computer up and running for her. Talk more later...We've been outside a lot lately now that Spring is HERE! yippee!! Sandy

[lymebytes]

Hi Sanlizzie. I can understand your friend being overwhelmed, but knowledge is power.

If you want me to elaborate on why I do not recommend this doctor, you can send me a private message. When is her appointment?

You could not pay me to take Doxy on an empty stomach! Yikes! Not eating something substantial may be why she had such a hard time with it.

I am sorry her computer is down. You are a good friend to her!

[6t5frlane]

Sanlizzie.Tell your friend to take Doxy after eating and to take a LOT of Pro-Biotic s. Also do not lie down for at least half hour after taking it. That should help a GREAT deal

[lymebytes]

I agree that taking high-quality acidophilus is important. You need to wait at least two hours before or after taking antibiotics to take acidophilus.

[Sanlizzie]

I am formulating a list of questions for my friend to take to her first appt with the doc in Cape Cod. I wondered if there are any pertinent things that I don't want to forget.
lol, This is weird doing this for someone else. She is terrified. 22 and newly married and her husband is not all that supportive. His attitude is stop worrying about it, minimizing it and this makes her worry more. AT least he is going with her to this appt so that much is good. Maybe he's starting to take a more proactive stance? I hope so...

So if you have any to add, please would you help us?? Thanks so much for everything.

Here is a sample of some of the questions...I am jsut starting this and have copied and pasted this.
well never mind that! I tried to copy an dpast this and it disappeared! So starting from scratch...lol

[Buttons2]

Sanlizzie,you won't recognize me cause I seldom reply on this forum anymore. I've kept up with what's going on here though.....if I recall correctly your friend was infected several years ago? And she is seeing an infectious disease doctor that some people aren't too impressed with?

Here's what I'd ask:
a copy of the blood test results (might call ahead & ask for this so she has her copy before leaving the doc office)

what's the procedure gonna be? and WHY has that drug been chosen?
will it be agressive with IV anti-biotics? or oral? what combination & for how long?

I suggest she try to remain calm,take a pill if that helps. You say she is terrified....why is that? Too much information overload? Try to reassure her that her biggest hurdle has been met-she was diagnosed!! And good thing hubby is going along, he has alot to learn I assure you! She's gonna get much sicker before she sees improvement,he needs to be there for her & not minimize the pain she's in. And it might be a good idea to let him know there is evidence Lyme can be sexually transmitted!

If this doc doesn't stress the importance of diet,tolerable exercise,taking pro-biotics,getting plenty of rest, then I'd have to say this doc isn't anyone to get enthused about. Her entire system could be affected & he should be aware of that.

Wishing her well, and she's very lucky to have a supportive friend like you,Lyme seems to kill off friendship's ......

Buttons

[lymebytes]

Sanlizzie, please be aware that this doctor does not test for co-infections. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. As someone who has had several co-infections, I know firsthand how important it is to know if they are present. Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This was true in my case.

Lyme and co-infections affect people differently, and treament needs to be individualized. There is no one size fits all so to speak. This doctor treats with two protocols only, when many are available. He says they will target the co-infections, this is not true. While these protocols may work for some, they may not work for everyone. I would hate for your friend to waste time.

He is the only Lyme doctor I know of who does not test for co-infections and who uses the same protocols for everyone.

Lyme disease can be passed through pregnancy and breastfeeding. You may want to make sure your friend is aware of this. I hope her husband will take this seriously. Do you think he would read "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner?

[Sanlizzie]

Just logged in anybody out there?? ~sanlizzie

[Sanlizzie]

I just realized that there was a second page in here for the replies! Thankyou so much for you ideas about our questions. I plan on asking the things that you both suggested.
She is FLOORED at the thought of Lyme disease being sexually transmitted....absolutely floored. (me too) This summer when she shared the dx with her gyn , he never said anything about that. There is so much. I know that knowledge is power....I just have to convince her of this. Tonight we had a long talk and she is coming around. WE waited so long for this referral to a "specialist". WE have decided that the second question to be posed will be about the co-infection testing. If this guy will not agree to that, then she will ask immediately for a referral again. She sick of wasting time with drs who pass her symptoms off and then have no input. So after this appt we will know for sure where she's headed. I believe in the treatment of the coinfections, certainly the testing for them is extremly important.
Thanks again for youinput. ~Sanlizzie

[lymebytes]

Hi Sanlizzie. Did you get my message?

Unfortunately, the majority of the medical community is not up to date on the facts of tickborne illnesses. Lyme disease is the second fastest growing infectious disease in the US after AIDS, yet little is being done to educate the public and medical community.

From what I understand, some Lyme doctors believe Lyme can be sexually transmitted but there are no proven cases. Lyme can be passed through pregnancy and breastfeeding.

I understand her frustration about wasting time with doctors who cannot help.

Let us know how her appointment goes okay?

[Quahog]

Hello,

I couldn't help but noticed that you are from NH or VT is that correct?

Anyways, I know of a fantastic doc in Portsmouth NH. He trained with Dr. Burrascano and is very knowledgeable about Lyme.

The downside is he does not take insurance but the upside to this is he does spent time with you in order to get you the right treatment.

Please feel free to PM me if you would like this information.

Take care and I hope your friend gets treated soon

[Sanlizzie]

Lymebytes No I didn't get a PM from you.....did you send it thru here or too my email?

[Sanlizzie]

okay I just got your email. Sorry I missed it. Sandy

[Sanlizzie]

I will certainly tell my friend aboutthe dr you know in Portsmouth. That might not work very will if he doesn't take ins tho. I wonder why he won't? Thanks. Sandy

[Sanlizzie]

ps to Quahog,

I live in VT and my friend with Lyme lives in NH. Sandy