posted
Hi, My son was dx'd with disseminated LD 2.5 weeks ago. My Dr. put my son on Amox. for 21 days. I did my research and found out that it is suggested he be on Amox. for at least 4 weeks. He was dx'd when the rash developed all over his body and he had multiple all body symptoms...4 wees before rash he had fever for 7 days, sore throat, swollen lymph nodes in neck, stiff neck, and he had a low white cell count. He was checked at that time for Mono. and Strep. Both were negative. He developed red eyes, top of head was tingly, headaches, fatigue, weight loss and he developed a low grade fever that did not go away. Then, when the rash spread all over his body, I took him in and he tested positive for Lyme. I have asked the dr. to add another week of Anti-biotics and one said no, it was not necessary. I told them that I, as his mother had the right to suggest one more week. (bc of my research) Finally, another Dr. said it was ok, but, she didn't think it was necessary. My question is this: Since he has the disseminated LD and many of the all body symptoms (including knee pain) do you think he should be on the antibiotic for 4 weeks instead of 21 days. I am going to pick up the remaining weeks prescription tomorrow but, wanted opinions....and, do you think there is a chance he will NOT be rid of this terrible bacteria. p.s. a lot of his symptoms worsened the first week but, are not going away.
Sorry so long! Thanks,
Dana W.
Posts: 5 | From USA | Registered: Oct 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I would immediately start working with a Lyme-Literate doctor. Trust me, you don't want to mess around with this and risk not getting it all. In my opinion, the potential issues from some extra ABX far outweight the problems you will have long-term if he ends up with Chronic Lyme.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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lyme_suz
Unregistered
posted
Hi Donna,
I am sorry about your son getting lyme. At least you now can get it treated.
I think that he should be on 4wks of the antibiotic and more. My understanding is that with disseminated lyme you need to treat until all symptoms are gone.
There are some great sources of information here. Have you looked at the newbie links here? They are great as they contain the facts you need distilled into the simplest articles possible, I think.
My kids and I have had lyme for 5yrs, treated for just under a year. We are slowly getting better.
It is important to get your son into a lyme doctor.
Best Wishes and let us know if/when you have more questions. We have some amazing veterans here.
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi danaw. How long has your son been sick? How old is he? If he still has the rashes or if they come back, it is a good idea to photograph them. Place something near them, like a coin or ruler before photographing to give them size defintion. Then you have evidence of them if needed.
Four weeks of treatment is not long enough for Lyme disease. It is my understanding that an infection caught within two weeks of the bite (which is not typical) should be treated with a minimum of six weeks of the proper dose antibiotic. The antibiotics kill the bacteria when they are reproducing which is estimated at four weeks. Six weeks of treatment covers one growth cycle. If symptoms are still present, futher treatment is warranted. A longer infection needs longer treatment.
Besides Lyme ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It is important to be tested by a Lyme reputable lab. Was your son tested for these? Ehrlichiosis can sometimes affect the white blood cell count.
It is important to see a knowledgeable doctor. Many do not understand Lyme and treat with outdated protocols. Where are you located?
It is good that you are researching, it is important to learn as much as you can. Hang in there okay? Good help is available.
Posts: 4682 | Registered: Oct 2000
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posted
Yes, its time to find a LLMD, because it does sound like possible erlichiosis, stiff neck, blood count, etc. Not sure how old your son is, but I would locate a pediatrician ASAP. Erlichiosis is treated with doxycycline and not sure if that can be given to a child, but I am sure there are alternatives if he is too young for that. If he was co-infected- if you catch it now, usually the immune system takes over the co-infections, so it is important to get proper diagnosis, ie; erlichia.
Posts: 38 | From New York | Registered: Jul 2005
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posted
Thank you all so much for your replies. One thing I do not know is when he got bit. He said he didn't remember having a tick on him so I am sure that it hid in his hair or something. Here are some more facts about my son.
age: 10 (soon to be 11 Oct.20) State: NorthWestern Wisconsin Activities: Every weekend my husband takes our children to the cabin, in the woods, on 80 acres....many deer etc.... *Three weeks before he came down with the "flu" we were visiting in Ohio. But, my children basically stayed in doors the whole time, so believe he was infected before the trip or right after we got back. When does the flu come on when infected? The rash appeared a few weeks later.
Labor Day weekend-When they went to the cabin that weekend, he brought along a friend and that boy had was just getting over a bad cold. (coughing, fever, etc...)(I thought my son caught that Virus) My son came home 24 hours later and he complained of a sore neck. Right away I checked his lymph nodes and one was large, under his ear. He then developed a fever, sore throat(swollen tonsils), neck soreness, headache. He missed the second week of school because his fever would not break. I took him in for a throat culture 2 days after fever began and it was negative for Strep. When his fever did not go away after 4 days I brought him back in. They drew blood and checked for Mono. Negative, but, his white cell count was 4.0 which was below normal for his age. The Physician Assistant wanted to check him if he did not get better and in a month do a recheck of his white cell count. I did research bc that is what I do. I arm myself with information. However, his fever resided (only to come back again, low-grade a week or so later) but,noticed he had redness in his eyes,fatigue,no appetite,and he started to complain of his top of his head tingling. A few days later he showed me a very faint bullseye type rash shaped like a football, about 6 inches long. (thigh) (that was a Sat.) By Sunday the there were more rashes all over his body....stomach, back, thighs...I took him in that Monday. The Dr. listened to his symptoms and after viewing his rash, said she was 99% sure it was Disseminated Lyme's Disease. They drew blood and said the results would be the next day but, meanwhile, said she would treat it now. We were given a 21 day supply of Amox. The test came back positive for Lyme. After getting home I did my research and found that it was best to treat at least 4 weeks. Called the Dr. and she said that she would confer with another Dr. He said it was not necessary. So, I told her that I would like a second opinion. She called me back and said that it would be ok, but, not recommended. Then, she said that we could try Doxycycline but, to check with Dentist bc of teeth discoloration. I checked with Dr. and decided against it due to the risk of teeth damage. My son worsened for a few days before he seemed to get better. In fact, he complained by this time of chest discomfort, and heart palpatations the day he started the anti-biotic.(that went away in 2 days) I suppose the bacteria was fighting back. He is now doing better. More energy, no more headaches, no more fever.....he has about a week or so left. Tomorrow I will pick up the extra week's dosage of Amoxi. I am concerned that he will be one of the 10-15% who does not get better. In fact, I am afraid that he will get the symptoms back after the month is over with. How do I find a Dr. who is an expert at Lyme's D. in my area? I am sorry this is so long but, wanted to give you the full details. Oh, also my son's white cell count is up to 6.0. Up 2 pts. since he had the flu-ish symptoms.....He is within normal range now.
p.s. my older son(age 13) has had swollen tonsils on and off for over a month. No rash or fever. I am taking him in tomorrow. Is it possible that he could also have Lyme's only more a -symptomatic? The Dr. here said she saw a bunch of cases in kids this summer. I am going to see if they will at least test him. He also is complaining of aches and pains but, that started a few years ago. I have Fibro. and thought my son (13) is getting an early case of it....what do you think? He has also been complaining of foot problems since about a year ago. Maybe nothing....I don't want to sound paranoid..... p.s.s. My LD son(10) also started mixing up words (grammer errors) over the summer and couldnt' figure what that was about but, now wonder if he got bit in early summer and that is why he was mixing up his words?? What is the incubation from the flu-like symptoms to when he got bit, I wonder?
Sorry this is so long! Dana W.
Posts: 5 | From USA | Registered: Oct 2005
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Donna,
Take the extra meds and then you need to watch him!
Since you have fibro you may have given your children Lyme at birth.
That is what i did. I had my children's blood sent to Dr. Jones in Connecticut. He looked at their blood and told me they have Lyme.
My doc thinks you only get the rash the after you have the bacteria in your system. Your body knows you are allergic and has this strong reaction.
You probably need to be checked too.
My family is on the pulse method. We only take one zith a month (the kids take more). But my husband and I have to work and raise and take care of our sick children.
This is just a thought for you since you are a Mom of two.
Get yourself tested--you can't take care of anyone else if you are sick.
God bless, Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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posted
Keeping a journal is a great idea! When my daughter became ill, and trip after trip to various doctors yielded no clear diagnosis, I requested copies of her medical charts and used insurance claim forms to reconstruct her health history. Surprisingly, we were able to track back to when we think she was infected. I prepared a chronology and carry a copy with me to new doctor visits. If you can't find a good LLMD near you, look for an integrative doctor. They are much more open-minded. That is where we got our dx and initial treatment with orals and good supplemental support. Be assertive and persistent! I wish you the best
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
You are all amazing with your good advice and quick response! I never considered that I might have Lyme. My mother has FM and so naturally thought it was heredity. I am going to ask the Dr. to test my whole family. I am hoping that the Dr. does not think I am being paranoid. I was diagnosed with Fibro.(FM) at age 22. (I am now 39) I also have struggled with Depression. I was dx'd with Hypo-Thyroidism in 04' and Interstitial Cystitis in 03'. I am on heavy meds. because of a severe case of IC.(chronic, debilitating pain and can't work) I have never considered the Lyme issue with myself. Just a weak immune system or something. Oh, and I have Osteo-Arthritis in my left knee. (and Tendinitis,in elbow) Thanks for your words of advice. I am going to check into my whole family getting tested. Will they turn me down bc there are no Rash? Will the Insurance pay for the testing if there is no active symptoms? Now, I have an idea of how complex this LD is. If I don't get the support from the Dr. here in my town, I will tell them I am going to find someone who will take me seriously. Thanks again for your advice and support. I wish you all a pain-free life and a full recovery from this terrible disease. p.s. if anyone is in Wisconsin and can recommend a LD Dr. please send me a private message, thanks! Dana W.
Posts: 5 | From USA | Registered: Oct 2005
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It is important to get tested by a good lab such as Igenex. Their website is www.igenex.com
You can order a test kit from Igenex and have the blood drawn by your local doctor if they are willing to do it. Igenex requires pre-payment but most insurance companies will reimburse you.
I'm a mom of 2 boys (age 15 & 19) with chronic Lyme Disease. I was tested this year and I'm positive. I've had my symptoms since I was a teenager. My main symptoms were/are chronic daily headaches, insomnia, shoulder/neck pain and yeast problems. It is a possible that my kids were born with Lyme.
Good Luck!
(I sent you a private message about a WI doctor.)
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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quote:Originally posted by danaw: I was diagnosed with Fibro.(FM) at age 22. (I am now 39) I also have struggled with Depression. I was dx'd with Hypo-Thyroidism in 04' and Interstitial Cystitis in 03'. I am on heavy meds. because of a severe case of IC.(chronic, debilitating pain and can't work) I have never considered the Lyme issue with myself. Just a weak immune system or something.
I was dxd with FM at age 30. I've had Lyme for at least 46 yrs. I also have Interstitial Cystitis and had to take early retirement from teaching 11 yrs ago.
I was dxd with LYME 5 yrs ago! I also am a patient of Dr C's in MO. If I were you, I'd pack my bags and head in that direction!
As for incubation period...I was rebit last April and came down with flu-like symptoms 9 days later, even though I began doxy on day one!
PS....The IC will get MUCH better with Lyme treatment!! Or at least....mine did!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Lymetoo, Unfort. I can't afford to go to MO. I have been off work for almost 2 years and it is a struggle to make it one month to the next. I filed for Disability over 8 months ago. Got my first Denial in August. It is a long drawn out process and hopefully I will win. Anyways, I just went to the Dr. yesterday and had my oldest son tested for Lyme also. I found out they do 2 test. Elisa and the blot test. I should know something by Friday. I am also thinking about having my husband tested bc of his mysterious complaints for the past 6 years. Moodiness, sleepiness(he did get dx'd with Sleep Apnea) depression, tingling in his arm and hand, Prostatitis, daily headaches and the list goes on. As much as my husband and kids are in the woods, I think there is a strong possibility that they were all exposed at one time or another. I, myself, don't think it is necessary to be tested as my diseases have all happened during different stages of my life. You said that you have had FM since age 30. Do you think that you contracted Lyme all those years ago and then got reinfected again? That is what frightens me...the fact that a person can get this over and over again. (and considering the constant exposure my family has almost weekly) I also picked up another weeks worth of Anti-biotics for my youngest son. So, 4 weeks, instead of 21 days. The only symptom he has left is some ankle pain in am that goes away an hour later....IF he gets any one of his other symptoms back, I will take him back in and get him tested for co-infection and get him back on an anti-biotic for a longer period until his symptoms go away completely. I am thinking of contacting a Dr. in Eagle River (3.5 hrs. away) that was referred to me the other day. Anyways, thanks again for the information and support. Take Care, DanaW.
Posts: 5 | From USA | Registered: Oct 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I had fibromyalgia and it is gone- also IC and it is gone- thank goodness!~
My daughter was sick and she is all better- I agree 150% with everybody!!!!!!!!!!!!!!!!!! Get your son - and you- to a Lyme doc*)!*)!! Best wishes, Sarah from CA
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Spend the money you think you can't afford and get a Doctor that specializes in Lyme and tick born diseases.
You'll end up saving money and your health in the long run.
I'm not saying to not be money savvy, just that it makes a big difference when you get a Lyme Literate doctor.
For me it was the difference of being treated for babesia(another tick born infection on top of lyme) or not being treated for babesia.
Being treated has made a world of difference.
I met someone here on Lymenet who said she didn't go for it and has paid with her health. she wished she had spent the money and went for it instead of going with the insurance doctor.
all the best to you and yours,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Dana,
I sent you a PM. Forget the Eagle River doc, he's a great LLMD but he can't take newbies, he's working round the clock as is. I sent you another doc that's fairly close in my PM. -Mike
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
it is so hard for new people to understand the urgency of treatment. We have all suffered imensly at the hands of lyme and so have many of our children.
I have lyme myself, my 11yo has lyme and babs and my 7 yo son was born with it.
THere is a huge chance you have it....listen to the advice here and do what is necessary.
pattiecake
Posts: 687 | From PA | Registered: Oct 2004
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posted
To Heather, I thank you for your advice. However, it is not a matter of not wanting to spend the money. I DON'T have 2 pennies to rub together nor the money to even travel to MO. I will search for a LD Dr. closer to home. I am near the Twin Cities and would appreciate it if anyone around that area could refer a good LD Dr. there? As far as my having LD? It will def. be something I will check in to. My oldest son checked negative for LD. Even I know that does not mean he doesn't have chronic Lyme. I would like to get my husband tested next. And, will pursue this matter bc I realize the importance of it....Does anyone know how much it costs to have that specialized lab check for LD? (can't remember the name off hand...) chronic LD, not active. Thanks again for your advice (Heather and patticake) but, please, don't assume that I don't understand the urgency or seriousness of LD. My youngest son is being treated and has 9 more days left of Antibiotics. I will do my darndest to get him in asap to a Specialist. In the meantime I will try to find a way to have myself and my husband tested as well. Take Care, DanaW.
Posts: 5 | From USA | Registered: Oct 2005
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