We have a relatively new member - Planny- that needs help. They posted at the tail end of another thread and I wanted to move it so that it would get the attention it/they need right now.
Need your help, guys... Miserable... I am 43 yo female, pretty healthy all my life, except 2015.
2 months on doxy 100mg 2 xday + Malarone, still burning headaches.. Lyme was never confirmed by blood tests , except 1 time in July of 2015 Igm 23 ( Western Blot) was present abnormal. Was told that I am Lymes negative.
I found LLMD that agrees with me that I probably have Lymes and some of the co-onfections(mycoplasma) was proved by the blood test. So, we started treatment, but i am wondering if the abx dose is not enough but I am afraid to judge his protocol as he was higly recommended by many many people.
Any thoughts of the experts?
Some of the history:
1. Beginning of February 2015 – Severe headaches for a couple of weeks, went to ER , thought I had a brain tumor… No tests performed but blood work - all normal… Hospital gave me some pain killers via IV and sent me home.
32. February 17- Acute appendicitis surgery. After the surgery, 2 days at the hospital with IV antibiotics and 10 days of Amoxicillin – headaches free until April.
3. April :
1. Started having severe headaches again. Primary care advised to see a Neurologist. Neurologist ordered Had brain MRI and neck MRA – tests came back normal. Was tested for Lyme disease – results are negative.
2. Saw primary care again. Prescribed: Gabapentin, Amitriplyne, Cymbalta, Topomax, Cambia… tried it all – no relief. Nothing helped. Stopped taking any drugs but iver the counter pain killers that did not help much.
3. Blood vessels on my left eye started to pop- one time blood vessels exploded and the eye started to bleed. Went to see eye doctor – after the course of prednisone drops it got better.
5. May- October:
1. Shooting pains in left side of the lower abdomen. Had Pelvic ultrasound done and colonoscopy – everything came back normal. Pelvic ultrasound was done 2 times. Plus I had a CT scan done at Howard County General Hospital when ended up at the ER with severe pelvic pain.
1. Started having issues with joints- incredibly bad cracking, got TMJ on both sides… Went to see Primary care- I asked her to repeat Lyme disease test and some others. Negative results for everything: Lupus, RA, Lyme. HOWEVER, ONE OF THE Lyme disease marker Igm 23 ( Western Blot) was present abnormal. Still was told that Lyme disease test is negative.
2. Wake up with red bags under my eyes/ swollen eyes... Home remedies such as tea bags, cucumbers, nothing provides relief. Quality of sleep is poor. Extremely tired, fatigued…
3. Experience earaches, shooting pains in left side of the head but did not have pain all over the body or joints. Joints were just cracking at that time.
Burning crazy headache all over my head- took Medrol pack while at Ocean City, which relieved pain a bit. Joints issues continue.
1. Joints started to ache. Also, I got pain all over the body- muscles and joints, persistent headaches.
2. Symptoms improve sometimes for a few days but then they come back again… Pain seems to come in waves.
3. Had to reconstruct a root canal as one of the canals was missed when the tooth was fixed a few years ago and tooth got inflamed- took antibiotics for 10 days after. (Amoxicillin)- felt a little better after.
4. Went to see Primary care as headaches and body aches were intolerable. Tried pain killers – did not work. Was told that joint s- it is aging issue and I probably always had it. But I know I never had it before this fall. She did not know what to do with my Headaches and recommends to take Gabapentin again. I cannot take gabapentin – feel worse with it than without. Primary ordered to repeat blood work. Lyme test was negative as well as Lupus and RA.
1. Started to have tremors and tachycardia…. Scheduled an appointment with cardiologist.
2. Went back to Neurologist and had Nerve Conduction study done – results are normal.
3. Saw Rheumatologist that did not take me seriously. She looked at my blood work and told me that I probably have fibromyalgia and nothing really going to help me if Gabapentin did not help in the first place.
10. November :
1. Saw cardiologist – advised to do stress test echo and put an event monitor. Everything turned out to be normal.
2. Went to see a Neurologist again, asked for Brain MRI – came back normal, no changes since April. Blood work in November- Lyme negative. Experience pain and aches all over body, hard to take a deep breath - feeling sore ribs…
3. Had another blood work done ordered by neurologist- normal results.
1. Saw another Rheumatologist for a second opinion, who did a full exam ( states that the exam was normal) and ordered some blood tests. Still need to do this one.
4. Went to see Primary Care on 12/15. Offered Antibiotics treatment ( Doxycycline – 100 mg x 2 a day) + supplements: Fish Oil ( EPA + DHA = 1500 mg) , PS 100 , Probiotic and Curcumin 500 mg x 2 a day.
12. All of these months I was attending acupuncture specialist, chiropractor, therapeutic ultrasound for the neck and shoulders, massage, trigger point therapy.
13. Waking up with numb hands- sometimes left, sometimes right.
14. Eyes – popping blood vessels, inflamed conjunctiva. Went to see an eye doctor several times. Using prednisone drops periodically.
15. Easy and often bruising.
12/15 – started Doxycycline 100 mg x -1 x 2 per day – for 30 days
01/16 - Added Malarone by LLMD.
16. Woke up on 12/20 at 1:30 am drenched in sweat,
opened eyes - room was spinning. Crawled to the bathroom- was vomiting for 2 hours until husband took me to the emergency room. Hospital ran blood, urine and did CT scan of the head- all normal. Gave me some Ivs and sent me home.
17. Woke up on 12/23 at night- pulsating pain in the left side of the head…. Took 3 ibuprofens and put a cold pack on the side of the head - felt better in a 30 min.
18. Feeling OK for about
a week, 12/29 – woke up with severe headache again, Neck pain, cracking and aching joints
19. Did IV Cleanse with Glutathione 2 times during December. Last Cleanse on 12/29.
20. 12/30- Flashing face, only left side…. Red area under the eyes as well… - first time ever happened on one side.
21. Dizzy, lightheaded, out of balance every day.
22. Saw LLMD on 12/30/15 – prescribed Doxy 100mg/2 x/day, Malarone – 1/day, Pinella, Burbur.
23. Added Nystatin to treat east.
LLMD ran blood test for chronic infections and Immune system markers.
25. Results 01/15/2016:
- Lyme is a probable
27. Labcorp results:- Low Immune markers
MCH 26.2 pg L 26.6-33.0 01
IgG, Subclass 1 379 mg/dL L 422-1292 02
IgG, Subclass 4 <1 mg/dL L 1-291 02
Immunoglobulin M, Qn, Serum 480 mg/dL H 40-230 01
Candida Antibodies IgM 16 U/mL H 0-9 02
H. pylori, IgG Abs 4.2 U/mL H 0.0-0.8 01
Human Trans.Growth Fact.beta 1
TGF-b1 19220 pg/mL H 344-2382 04
• Vitamn D – 5000 UI – one / day
• B Complex - one / day
• Fish Oil – 2 – 6 / day
• CoQ10 – 300 mg – one / day
• Adrenaven- 2 / day from Premiere Research Labs – for adrenal support
• PS 100 – 1 x 2 times /day ( Phosphatidylserine)
• Vitamin E – 1/ day
• Curcumin – 600 mg 1/day
• Magnesium- 2 caps/day
• Pinella+ Burbur – 10 drops of each 1/day
• Activated charcoal
Epsom Salt baths
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)