Hi there. You know, the worst thing is when someone you love is ill and you can't be with them 24/7. It makes you worry so much more. You must be going crazy.
OK. They say she has post viral fatigue. I can see where they might get that but, purely through my own experience of CFS, same sort of thing, there are many more symptoms than the ones you have indicated.
Think about it. If anyone has a low grade fever they usually feel lethargic, tired, ill. Flu -like symptoms, yes but not usually with any fever. Once again, if you have flu-like symptoms, a low grade fever and laryngitis you are not going running round the block.
If this was my child, and I would take a loan if I had no money, I would take her to the best paediatric consultant, a different one, and have him run blood tests, take throat swabs and insist on a proper diagnosis. CFS/ ME is not good enough. Your daughter has a recurring something. Maybe she just needs a course of antibiotics re. her throat?
I don't feel they have explored the obvious. It's a bit like my husband who's a truck technician. I keep telling him to check the oil and the spark plugs if the car's not working but he goes straight to the complicated bits. I have been right on more than one occasion! And I know nothing about engines!
I don't know what the CMV virus is, I'm sorry.
Both my girls were off school every 2-4 weeks with recurring tonsillitis. The elder girl had it very mildly but still felt rough. The younger did it properly with a flying fever.
No-one would take out this child's tonsils. Eventually, after contracting Glandular Fever at age 15, A private ENT specialist (not the one we usually went to) admitted her to hospital as she could hardly breathe, and told me her tonsils were so septic that he'd never seen anything like it. Soon as she was over GF, he took her tonsils out. Not a good time, all that time off school, unnecessary years of suffering, cartloads of antibiotics, I was fuming!
Anyway, she's now a lawyer and doesn't suffer sore throats any more, except when she screams at her own kids!
We attended Great Ormond Street Hospital, London UK with this child for years. A world renowned children's hospital.
Yet, when she was ill with GF, she was too ill to travel for the 45mins it took to get there, so we attended a local private hospital and saw another, as it turned out, excellent ENT consultant.
I am just telling you my experience so that you can come back to the beginning, think a bit more clearly and look for the simple answer with a different specialist.
To be entirely honest, just see what they say if you ask for a course of antibiotics as it looks, to your layman's eye, like some sort of recurring infection that her body just can't get rid of on it's own. Fever means infection where I come from. Good luck, love to your little one, let me know how she gets on.
What type of test should I ask for? I am guessing the western blot with all the bands for Borrellia Burgdorfi.
What does it mean CFS/ME?
What do I specify for the throat swabs?
Thanks for your help.
Hi, if you want to specifically rule out Lyme, postural BP and all other things she has could be Lyme, then you have to find a Lyme literate doctor. We call them LLMD.
Mainstream doctors use testing that give you many false negatives. LLMD use a specialized laboratory called IgeneX. Lyme can come with co-infections, this further complicates things. I have 2 co-infections.
She doesn't ever have to have a rash to have Lyme. You should go to our association at ILADS dot org and ask them for an LLMD near you. They can rule out Lyme if she indeed has something else but her pediatrician can't rule out Lyme.
While you are on that site read Burascano's treatment guidelines, read other articles. You can also read up at the IgeneX website.
Lyme gets worse and worse without treatment and we don't want her to get into a bad situation like many of us are in.
Let us know if you have any other questions. Good luck
thank you for your help. I just sent a fax to infectious disease doctor and basically begged him to just put her on a regimen of antibiotics. I see no real down side to this. Do you or anyone see any downside to simply go through 3 weeks of doxcillin or amoxicillin?
The pediatrician did to throat cultures and says it shows nothing.
I dont quite understand what you mean to "rule out postural BP" she apparently does have this due to tall and thin physique, they are not worried about this. tell her to drink more liquid and eat salty foods. Also dont quite understand relationship of postural BP to Lyme. Is it a symptom of Lyme? Is it something independent of Lyme, so you said we might "rule it out?" unclear.
I have read some of Burrascos writings and am rapidly come up to speed on the information out there.
Do you think the doctors will hesistate to do the Igenex test? We are low income and have state funded program for low income kids. We are also in Maryland, United States and I see people here from England so I dont know if the test is more common there or if docs in USA do not know about Igenex. This is a bit confusing to me as I read and try to understand all this stuff.
Igenex is based in CA and is one of the best tick disease labs, maybe the only one now that I've just look at MDLs site and no where is Lyme mentioned. When did THAT happen? Rhetorical.
And I'm going to guess that there are more people here from the US than from Europe----- but we do have a share of UK and Europe members.
You asked about postural hypotension (POTS) and it's relationship to Lyme. Since Lyme is the master of mimicking almost any disease or condition around and also affecting all systems in the body----- I'd imagine that it 'might' be considered a symptom of Lyme. Cause and effect? I don't know and I doubt if anyone can say for sure.
If the doctors are aware of it then put that worry on the back burner for a while.
The big problem is that you mentioned seeing an Infectious Disease doctor. By and large, as a group, they all follow the IDSA's guidelines----- which are horrible for anyone with Lyme and has had it for more than a few minutes. Obviously an exaggeration------ but since the bacteria is capable of reaching the CNS (Central Nervous System) within a few minutes to a few hours then treatment is much longer and aggressive than the IDSA suggests.
They say 10-30 days of low dose doxycycline will cure you.
Almost no reputable doctor who knows Lyme will recommend that protocol. But an ID doctor will almost certainly recommend that.
If, for now, that's all you can get---- then of course take it. There is some evidence that treating for a short time and then stopping will just make the bugs 'hide' then come out again after the weaker ones are killed. But in your case, since your state run insurance will almost certainly not pay for an llmd (or ILADS trained doctor).......I understand being short of money is a huge problem.
[Just reread the above---- still out of time but I do have one suggestion for you that will have to wait until tomorrow. You can PM me if you like]
There are some sites that will help pay for the medications you might need for a longer course, but without a doctor who will write the prescription...... again, up the creek.
I'm sorry, but I'm running out of time right now---- and don't want to leave you half informed but since you obviously are a newcomer to all 'this' let me suggest a name to Google----- Tom Grier. Read everything he's written.
I'll get back to you tomorrow----- all is NOT lost but having to depend on an ID doctor and having state insurance puts some obstacles in the way. Oh and before I leave there ARE some ID doctors who will treat properly and I'll keep all my fingers crossed that you'll find one.
One of the big side effects of Lyme we call "Lyme brain" we forget things quickly or can't get our words out clearly so forgive me for confusing you.
I was trying to say if you want to rule out Lyme you should do that because postural BP is a side effect of either Lyme or a co-infection. That was one of my first side effects. I was bit over 20 years ago but only got a diagnosis 14 months ago. The postural BP was one of the first symptoms I had so many years ago. I know many others that have it.
The downside to only 3 weeks of abx ( antibiotics) is that it will not cure anything unless she was recently bit. Then there might be a chance of recovery.
You should also know that infectious disease doctors are basically our "enemies" because they don't believe in chronic Lyme or long term abx as a treatment. Please google IDSA ( infectious Disease Association) and Lyme disease and you can read up on this conflict that we have with them. The CDC follows their guidelines that is why there are so few LLMD, Lyme literate doctors, because many LLMD are brought before their states medical board and some get their licenses taken away. We never mention LLMD on here by name for that reason.
If you want more under standing you can watch "under our skin" free online. This documentary is hard to watch but gives good information.
Since you are doing everything for someone under 25 years old, there are financial services to help Lyme children and young adults. One is called Lyme-tap and the other one is called the Lyme light foundation. These are grants that you would qualify for. ID doctors will not do an IgeneX test, only LLMD will do them.
I know this is all very overwhelming and worrisome but your best bet is To go right to an LLMD.
I hope I have made more sense and will be glad to answer more questions. Feel free to PM me if you would like to.
Forgot to mention throat cultures won't show anything. That is not a tool used to determine if you have Lyme or not.
I am also in Maryland and have the phone numbers to 4 different LLMD's in the area. If you need any help let me know. First time appts range from $600-900, plus blood tests which run around an additional $600. I just want to give you a heads up, so that you are prepared. The final $1600 bill came as quite a shock to me and I don't want anyone else in the same situation. You can ask ahead of time if they would be willing to accept payments and there are a few websites that offer financial aid to Lyme suffered especially young patients. I can't remember the names of the sites, but someone else may remember or you can scroll through the posts. There was a post with links within the past couple of months. PM me if you need any dr's names or numbers, 2 of which I got directly from ILADS. Don't let my warning of costs sway you from contacting an LLMD! Many will be willing to work with you.
For more information about financial assistance to help with Lyme disease here is a link to the thread I posted a while back.
You might be even more interested in the help that author Amy Tan and LDA present for children. Amy Tan had Lyme (now in remission) and is helping disadvantaged children this way.
"I just sent a fax to infectious disease doctor and basically begged him to just put her on a regimen of antibiotics."
Bless you for trying----- but even if s/he will it will probably be for just 10-30 days of 200 mg doxycycline.
Since you're reading Dr. Bs guidelines you can see that the 'normal' amount for Lyme is 400 mg per day for...... a very unspecified time. More like months.
This is not some 'ordinary' disease. The replication/division time of the bacteria (much longer than most bacteria, if you've read Tom Grier).
(No, Tom Grier does not walk on water! LOL But he has presented information about Lyme in a very reader friendly way.)
"The division time of Borrelia burgdorferi is very long. Most other pathogens such as Streptococcus, or Staphylococcus, only take 20 minutes to double, the doubling time of Borrelia burgdorferi is usually estimated to be 12-24 hours. Since most antibiotics are cell wall agent inhibitors, they can only kill bacteria when the bacteria begins to divide and form new cell wall.(35,59-62)
This means: Since most antibiotics can only kill bacteria when they are dividing, a slow doubling time means less lethal exposure to antibiotics. Most bacteria are killed in 10-14 days of antibiotic. To get the same amount of lethal exposure during new cell wall formation of a Lyme spirochete, the antibiotic would have to be present 24 hours a day for 1 year and six months! Note: Antibiotics kill bacteria by binding to the bacteria's ribosomes, and interrupting the formation of cell wall proteins.
Like other spirochetes, such as those that cause Syphilis, the Lyme spirochete can remain in the human body for years in a non-metabolic state. It is essentially in suspended animation, and since it does not metabolize in this state, antibiotics are not absorbed or effective. When the conditions are right, those bacteria that survive, can seed back into the blood stream and initiate a relapse. (59-62,70)"
To emphazise the length of time needed, I'll repeat this sentence:
"the antibiotic would have to be present 24 hours a day for 1 year and six months!"
A far cry from the 10-30 days the IDSA (Infectious Disease Society of America) claims.
Thank you so much for so many responses. I am very touched, it helps to know alot of people are concerned.
I will try to be brief because I have a lot to do. Leila will send me the names of LLMD and I will just go straight to them if I cant get anything done with current docs.
The only burning question in my mind at present is the time frame, she has had this for 8 weeks now. How far behind the curve are we? How long before untreated becomes long term? Brief research suggests on average 6 months, so hopefully we still have time. But maybe she was bitten earlier, she had very brief illness in Feb and March. Coughing sore throat, low fever. I dunno, no one really does just looking for ideas and concerned.
One thing I dont get is why the pedia doctor says its too soon to do a second lyme test. What the hell is up with that. Does that make sense to anyone? They did one 4.21. I am not in the mood to wait for this.
Is western blot the same as IgG? (a subset I think) But Igenex test is totally different from western blot. Yes?
Thanks so much on more info on antibiotic treatment and what this entails. The CDC regimen is totally different from what lyme people understand so I did not quite get that first time around.
Anyhow. I will keep you posted. thanks
OK I see the Igenex site has more info on the relationship of western blot to Igenex test. So I will follow up there and figure those answers.