posted
Her headaches have greatly decreased, so that is good.
But her new symptoms are:
1. Skin is itchy all over - no rash, no dryness
2. Achy knees
3. Knots in her muscles in her upper back. She frequently asks for massages now, and I find these knots
She's only 4 1/2.
She has been in treatment with Dr J since March. He did not change her meds this summer, and she is not due to go back until December. I put in a call to his office Friday and have not heard back.
I'm really annoyed that the follow-up visits are so spread apart now. Appointment #2 (this summer) and appointment #3 are 5 months apart. That doesn't sit well with me.
This is expensive and hard on her little system, not to mention her psyche. I HATE to think we are just screwing around, wasting time.
I hope to hear back on Monday, but if he doesn't switch her meds up, I think I'm going to have to find a different doc for her.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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Rumigirl
Frequent Contributor (1K+ posts)
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posted
I am sorry to hear that your daughter is having these symptoms. It's so hard with such a young child.
I presume that you asked for a sooner appt? You could ask to be put on the cancellation list for a sooner appt. And strongly ask for the appts to be closer than that. That is a long time.
One thought: maybe she was bitten again, but no one saw the tick? That's always an awful possibility.
On the itchy skin, it could be Candida. Is she taking nystatin? And plenty of top-notch probiotics? I find it's best to take the probiotics twice per day, not once.
I hope she feels better soon. You know what they say, "the squeaky wheel gets the grease!"
Posts: 3771 | From around | Registered: Mar 2008
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glm1111
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posted
So sorry your little one is suffering. Check the symptom list at Humaworm for parasites. It's very possible she has this often overlooked co-infection. Candida is another possibilty from the abx.
They have a childrens dose. One mos of antiparasitics is never enough, and taking a ninety day break as Humaworm suggests is not a good idea. Hope she feels better. I hate to see the kids suffer. It's terrible.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Lymedin2010
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How is your daughter with sugar and carbs?
My daughter also sees Dr J. I think the times have changed and require new methodologies. My daughter's symptoms went away, but are now returning. Headaches at night and burning feet. She has muscle twitches that we see at night when she sleeps.
I finally got her to take a finger prick last week and provide me with blood for a microscopic blood smear. What I find everywhere are Spirochetes, biofilm, and candida.
She should have more symptoms based upon what I see, but she does not.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
Thank you for your thoughts here and in PM. I will reply to PMs as I am able.
They are on daily Nystatin, and at one point were on Diflucan daily for 6 weeks.
We had previously seen an LLNP, but she was ... insufficient.
I now see an LLDNP (doctor of nurse practioner) in DC. She is highly regarded, sees kids, and Dr J was one of her mentors.
My top option is to switch to her. She is comfortable with herbs in addition to prescription drugs, and does follow ups monthly.
I will write more later. Must get the kids off to school and myself out of this house - new roof today. Great to have storm damage from months ago repaired, but it is LOUD.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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Catgirl
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posted
Poor little thing (so sorry to hear this). Itchy all over for me (no rash either) has been yeast. You can try giving her oil of oregano to kill it, but her diet will have to change or it will come right back.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Razzle
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Member # 30398
posted
Itching without dryness or obvious rash can be from liver stress, too... And all the meds we are on for these infections can certainly cause liver stress.
When was her last liver enzyme level blood test? Might be good to see if the doctor will send in an order for those, at least to rule out liver issues....
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Another possibility for the itching is parasthesia, which is a type of neuropathy which may be flared to to herxing. I had this recently, i've been on iv ricephin for 4 weeks and that was one of the die off reactions for me; it drove me NUTS, itchy all over here and there, no rash at all; felt sort of like prickly itchy sensations. I found hot bath would help ease it for a little while. I still get them although not as strong, hope that helps, also taking lots of detox supplements and lemon lime water with alkaselter gold and glutathione helps as well
Posts: 79 | From Maine | Registered: Sep 2011
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nefferdun
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I am really sorry your little girl has this horrible disease and hope you figure out what is causing what. I agree you need to see a doctor more frequently.
Don't forget protomyxzoa which causes itching and the other symptoms you describe. You can convert her to a low fat vegan diet to see if that helps. It is very healthy and won't aggravate yeast if you stick to whole foods.
Borellia pain is usually migratory and in one joint, not both knees. That could be babesia. Headaches behind the eyes and pain/cramping in the large muscles of the back, buttocks and thighs are other symptoms of babesia. These symptoms are also related to protomyxzoa. One way to tell the difference is by how much she is sleeping. Insomnia - PR (or bart). Oversleeping - babesia.
So often doctors just give a one size fits all treatment. They ignore the primary symptoms. They give a drug for too long when it obviously is not working. We all have multiple infections. WHen one infection goes dormant, another one emerges to take over. You need to have guards on all fronts. Pay attention to subtle differences.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Poor baby. I have a four year old. I cannot imagine him being sick the way I am sick. I will pray for you as a mother and for complete health for your little one.
Posts: 415 | From USA | Registered: Jun 2012
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My doctor tends to interpret the itching more like BBinme - as a central nervous system issue.
I am blessed that both my children are able to be active. But that means they are active - non-stop homework, playdates, ballet, etc. It is HARD, and adding more mid-day supplements (I freely admit they could use more probiotics) is tough on a regular basis.
My concern about their current doctor: he decided they were both improving at our last visit, and therefore they should continue the same drugs. He based it on a neuro exam. Neuro/coordination was never the biggest symptoms for them.
Also, hhe gave them the exact same exam they had 4 months earlier. 1. They knew him and were more comfortable with him. 2. They had done these exact tasks with him before. 3. They were 4 months older/more coordinated.
I know I'll be better the second time I go through an obstacle course compared to the first time, but that doesn't mean I'm suddenly more coordinated.
Anyway, rant over. I think I know it is time to switch doctors (and no, the office still hasn't called me back since Friday).
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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posted
I'm sure it's hard to keep a 4 yr old away from sugar???
I hope the changes you are making will help her!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Ellen101
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posted
I can't imagine how hard it is too see your little one struggling. The follow up appts seem awfully spread out, especially for a child in treatment. I see my LLNP every 2 months.
I would put another call in if you do not hear back soon. Any possibility itching all over could be due to an allergy from one of her meds? An allergy can develop at anytime, even if you previously have taken the med without any issues.
Have you tried benadryl for the itching?
Posts: 1748 | From United States | Registered: Dec 2011
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surprise
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posted
It is so hard to treat the children. If we think it's hard finding a good LLMD
reasonably close by, finding one that treats children, with experience, is 10 times harder. And let's not go into the cost.
Sounds like you totally know what is up, but, Maybe some more detox?
Epsom salt baths, or a massage with mag. sulfate cream, binders, milk thistle, make sure bowels moving, Burber or other detox tinctures, ibuprofen, magnesium...
These are some things that can help my daughter. I know your struggle, hang in there!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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philly78
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posted
It is tough but it sounds like you are doing what needs to be done. MY son sees our LLMD every 4-8 weeks depending on how he is doing. I cannot imagine waiting so long between appts.
I get itching related to protomyxoa...or at least that is what I'm told it is from. I happen to think it is related to thick blood. After I upped my systemic enzymes (I'm currently on bulouke and serrapeptase) it helped.
Does her itching get worse with activity? I only ask because mine did.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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Tammy N.
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posted
Sorry I don't have any advice, just wanted to offer words of support. I can't imagine how difficult it must be watching your child with this disease. I feel for you. You are a smart, educated, caring mother. You will find your answers, soon I hope.
My best, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Any doctor who is experienced with children and families should know that 4-5 months between appointments is unacceptable!
We are fortunate to have a few experienced pediatric LLMD's in the Mid-Atlantic area. I hope you find one who is truly able to help and support you and your children.
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