I am new here. My 18 year old son was diagnosed with Lyme in April after being ill for 3.5 years. It started with a "viral " infection that was EBV like, as described by the doctor. Exhaustion, migraines, unexplained fevers. 6 monhts later he was fine. But 10 weeks later he laid down, said he did not feel well and has not been the same since.
After diagnoses of a sleep disorder, POTS ( a form of dysautonimia), Hashimoto's Thyroiditis, he was diagnosed with Lyme (CD 57 was 30), Babesia(based on elevated Eosinophil CAtionic Protein), Bartonella( based on Stretch marks on back), Mycoplasma and HHV 6, which were IGG positive, but IGM negative. Ignenex Western Blot in April was IGM band 18+, band 39 IND, and band 41 +. IGG was band 41+.
On Azithromycin and Doxy through end of August, then began IV Rocephin. Now he is on 4 grams. He also tested positive for KPU.
First week in December reran Igenex Western Blot. Now only IGG and IGM band 41 IND. He was pulsing Tindamax when the test was run. Mycoplasma and HHV 6 still IGG positive, IGM negative. Bartonella and Babesia FISH tests are negative. Chlamydia Pn is negative. He still has exhaustion, he never really herxed. IGM is low. IGG is low with subclasses IGG 1 and 2 being low.
The LLMD is stumped and still recommends to stay on antibiotics because my son's immune system may be affecting the Western Blot, or he does not have Lyme.
My son has been getting a cold every month for the last 3 months, which he has not had in over a year.
I do not know if he is getting better or not. He still does not sleep well and is exhausted, but some symtpoms seem to be lessening.
Just wanted to bounce this off everyone since I do not know what to make of this and how to proceed.
Posted by momlyme (Member # 27775) on :
Was the KPU test through Vitamin Diagnostics?
If he tested positive for KPU... this condition is caused by the defect of several of the 8 enzymes needed for the synthesis of heme.
Heme is needed for liver detox reactions.
My son has KPU also and we had to stop IV Rocephin to treat KPU because he could not detox. This inability to detox caused WBC and ANC to go down (ANC should not be below 1,000) and AST & ALT (liver function) to go up -- check your son's bloodwork if you have copies.
From all my research, treat KPU first. Then you will be able to treat and conquer the Lyme. All efforts to treat Lyme will be for nothing if you leave KPU untreated.
I hope he feels better soon.
Posted by alelis (Member # 27989) on :
Yes, Heather, he was tested through Vitamin Diagnsotics. He is currently on the CORE program and has been for a month. Interestingly enough, his stretch marks are fading and he is not getting news ones.
We have been doing IV glutathione 3 times per week, as well as Pekanna, though that has been hit or miss. We just forget to do it. I do not know how to tell if he is having trouble clearing toxins.
His WBC have always been low, and only recently have gone up to a 6, but then back down again. I do not know what ANC is. As far as liver enzymes, only Alkaline Phophated get elevated, but he had that before starting antibiotics.
But his BP has now been consistently good. He has always had low BP, 90/60. He is less dizzy, does not have headaches, stomachaches anymore.He has lost interest in food over the last 5 months and has lost at least 10 pounds,which for him is alot becuase he is so thin.
So we are doing the CORE in conjuction with the anitbiotics. The plan is to treat for one more month then evaulate. His DHEA was elevated, but he is taking an herbal Adreanl support so that my be affecting it, but we are going for an adrenal ultrasoung anyway.
He is not having any reaction from the CORE, as it mentions you get heavy metal toxicity after beginning it.
Posted by momlyme (Member # 27775) on :
Are you taking a binders to get the heavy metals out? I have my son take Chlorella 30 minutes before meals and Bentonite Clay a couple of times during the evening.
We are not doing the core... I purchased vitamins and minerals separately.
The page is not loading for me right now, if you have trouble pulling up the file on the internet, send me your email in a Private Message (PM) and I will send it to you as an attachment.
Antibiotics can also affect W.B. If he tested positive he has lyme once, keep treating until he is better. The test is not reliable. Do not doubt the positive test -- ignore the negative.
As for the sleep, are you giving him melatonin at night? My son is taking 5g per night to sleep. We tried to cut back, but he does not sleep on less. Sleep is necessary for detoxing, healing, sanity!
ANC is Absolute Neutrophil Count.
Sounds like you have a good plan with the adrenal ultrasound and re-evaluating after one more month on the IV abx.
I know what you mean by I don't know if he's getting better or not. My son gets so sick of me asking "how are you doing" I so want to see progress... almost everything makes him worse and not better.
Try 5 small meals. My son is never hungry either but they have to eat. I make stuff that's good & good for him. Lots of nuts, chicken, guacamole, spinich, artichoke, egg nog with almond milk...
My son had to go gluten free, sugar free and dairy free -- helps with the stomach problems. If what your son eats makes him feel ill, he won't want to eat. We try to eliminate foods that make him sick.
I hope this helps.
Posted by alelis (Member # 27989) on :
We are not doing anything for heavy metals yet. The llmd want to first do a urine test for heavy metals before then after starting the detox.
My son has been on XYREM for sleep since July. That knocks him out. We tried melatonin and a few sleeping pills, but they did not work. He has not slept well in 4 years. He never wakes uprefreshed. He has not been in school for 2 years and his muscles have atrophied. School was a nightmare as it would take him an hour to just open his eyes in the morning. He was absent and late so much he got kicked out and we went to homebound schooling, but he has brain fog so the mental activity is exhausting.
I am going to order the earthing bed sheets today to see if they help with the sleep.
Nothing makes him sick to eat, but I am doing alot of research on nutrition and am trying to give a healthy diet. It is alot of work but it is the only thing I can control.