Is Lyme the reason for all this?

[Lydiasmum]

I would appreciate anyone's opinion on my thought process! I will try to be brief but it is difficult so bear with me..

 

Me - hayfever, dermatitis, cat allergy, wheezy with colds. Developed bizarre massive regular hives in mid-20's. Can't pinpoint exactly when it started but I remember having a terrible chest infection after a stressful time and it took weeks and various combos of abx to shift. I also took holiday abroad around this time and got several infected bites. Fast forward 15 years and i now have debilitating flares of angioedema/arthritis symptoms and generally feel unwell most of time. Diagnosed 'idiopathic delayed pressure urticaria'. Years of tests and prescriptions and nothing helps and nothing specific shows up except slight raised inflammatory markers as if i am fighting minor infection.

 

My dd7, bless her, has been thru the mill. Born not breathing, low birth weight and in general poor state. This was unexpected and a mystery to the doctors. Did i have an infection, had i taken medication they asked me. Autistic traits and diagnosed SPD at 4. Noise sensitive, very emotional and anxious. Seperation anxiety most debilitating. 4.5 yrs had overnight onset movement disorder, tics, dystonic posturing, foot dragging, anxiety through roof, a total mess for 6 months. Got much better but not 100%. Prophylaxis prescribed and still takes 2 years on to protect from strep following multiple sore throats and fevers. Generally much better these days but still anxious and has small flares a month after illness. Her main symptom apart from heightened anxiety is speech disfluency -this can get painfully bad for her. She also asks repetitive checking questions and has difficulty separating fantasy from reality. She is a bright, happy girl mostly but her motor skills are delayed and she's heading for a diagnosis of ASC with spoken language disorder. She is nearly at the end of her 12 month assessment pathway.

 

I had a lightbulb moment when i read up on lyme. I want to ask for a test, given that it can live in your body for years, you can pass it to your unborn baby and the borellia spirochete has a life cycle. My worst inflammatory flare ups happen every 3\4 weeks and i blame it on hormones\monthly cycle!

 

Am i on to something here? I can't shake the idea that if I can help myself I can better help my daughter. I feel i need to ask you guys before i embark on yet another idea with my doctor. I have been a needy patient!

Edited January 3, 2016 by Lydiasmum

[rowingmom]

Congenitally passed lyme or coinfections could be the issue for your daughter. Our LLMD diagnosed DD14 with such after clinically diagnosing me with bartonella as well.

 

As I have treated DD with bartonella and babesia antimicrobial herbs, I have treated myself as well with the same dosages and symptoms have improved dramatically.

 

My "menopause" symptoms (diagnosed by both a PCP and an endocrinologist) which started shortly after DD was born have resolved. These included vertigo, palpitations, hot/cold flashes, tingling extremities, headache, almost continuous flu-like feeling, derealisation, brain fog, panic/anxiety attacks, loss of cognitive/executive function (especially multitasking) ie. getting lost going to the grocery store and forgetting how to spell simple words like "apple", forgetting how to turn off a light switch, word drop, joint pain in the lower back and elbows, raging, fatigue so significant that I could not walk up stairs without sitting down, insomnia. And more, but it's been so long now since I have had these symptoms that I don't care to try and remember the rest.

 

Many of DD's initial symptoms were various motor delays and sensitivities to stimulus.

 

For your allergic-type reactions I would investigate Mast Cell Activation Disorder:

 

http://www.healingwell.com/community/default.aspx?f=30&m=3438440

 

There are several links in this post by one of the moderators on the HealingWellLyme forum which are worth reading.

Edited January 3, 2016 by rowingmom

[bws1565]

Hmmmm.

 

This post brings up several questions.

i originally came here due to pandas which was eventually corrected to Lyme Bartonella, for DD16.\

 

DS18, has had several symptoms listed above, including slight obsessive behavior, occasional eye tics, difficulty with auditory processing, multitasking, coordination. He is also complaining sometimes of ringing in the ears. ALL THESE SYMPTOMS ARE NOT TOO SEVERE and liveable. However, we have checked him for Lyme through Stony Brook and he has IGG bands of 41 and 93. I know these are lyme specific but he did not come up as having any coinfections. Doctor advised not to treat.

 

I remember there were times that I used to pray he should get strep, because with antibiotics after a positive strep he was always better for some time. He is not too agreeable to treatment, especially after dr's advice. Your input please??? (I don't feel 100% comfortable with sending him off into the world as is.....)

[rowingmom]

Hmmmm.

 

This post brings up several questions.

i originally came here due to pandas which was eventually corrected to Lyme Bartonella, for DD16.\

 

DS18, has had several symptoms listed above, including slight obsessive behavior, occasional eye tics, difficulty with auditory processing, multitasking, coordination. He is also complaining sometimes of ringing in the ears. ALL THESE SYMPTOMS ARE NOT TOO SEVERE and liveable. However, we have checked him for Lyme through Stony Brook and he has IGG bands of 41 and 93. I know these are lyme specific but he did not come up as having any coinfections. Doctor advised not to treat.

 

I remember there were times that I used to pray he should get strep, because with antibiotics after a positive strep he was always better for some time. He is not too agreeable to treatment, especially after dr's advice. Your input please??? (I don't feel 100% comfortable with sending him off into the world as is.....)

 

If you are asking for my input - your DD16 has lyme/bart, and in all likelihood your entire family has been exposed. Those that aren't exhibiting symptoms likely have sufficient immune function to resolve it or keep it in remission, while those with symptoms (your DS18) may not and are therefore having problems.

 

All antibiotics are not the same, and those for strep will not even touch bartonella (do not wish more strep upon yourself).

 

DD14's strep infections stopped recurring when we started treating bartonella (which is highly immune suppressive) and her immune response improved. Even her lyme WB started producing more bands - another result of improved immune response according to our LLMD.

 

If I was in your shoes and had been through all the messing about with strep and bartonella antibiotics that we have, I would seriously consider Buhner's herbal protocol for bartonella. If you don't have full resolution with that I would then add herbs from the babesia protocol as well.

 

Herbs are broadly antimicrobial (cover more than just one or two different infections), and contain so many different constituents (efflux pump inhibitors etc.) that when you have a whole protocol underway, there is little or no chance (Buhner's associate told me no chance) of development of resistance by the bacteria.

 

His book on the mycoplasma and bartonella coinfections is highly informative.

 

Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma

 

You should read it even if you decide not to treat herbally.

 

Seriously, the babesia herbs made a huge difference in DD's cognitive/executive performance. So much so that her teacher called within 4 days to ask what I had done. She was grasping math concepts that had previously been beyond her, it was like a light bulb being switched on, he said.

 

But you can't just do the antimicrobials and expect remission, the whole protocol needs to be used. Immune response needs to be supported and inflammation needs to be down--regulated to allow healing.

 

When I came to the end of our allopathic choices I tried alternative ones. They have made all the difference.

Edited January 5, 2016 by rowingmom

[bws1565]

Thanks rowingmom!!

 

You might have a point, with having my entire family exposed. DS11 has dilated pupil, with no other lyme symptoms. DD13 is always complaining about different aches and pains; stomache pain, muscle pain etc etc but is a great kid with excellent social and other development skills (I think she is just a complainer; these are not affecting any schoolwork or anything.)

 

However! If there are no other symptoms would you rock the boat? I don't feel comfortable doing this without professional guidance, and are paying too much $$$$ to do the whole family!!!

 

We do spend every summer in an area with tons of deer etc. We see them daily.

 

Back to DS18 I rechecked his bloodwork. He has igg bands 41, 58, and 93. No IGM bands; no coinfections.

 

thanks for your input.