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Well Lala, my story. Thank God I kept a daily log when symptoms started. I was eventually diagnosed with Neuro Lyme & Rocky Mountain Spotted fever. There is a chance of another undiagnosed coinfection. Here goes:

In July 2009, there were two ugly bite marks on left arm. I received some bad advice from PCP indicating since there was no rash or bullseye, it would be ok. This was the first in a series of bad advice I blindly trusted.

In October, the wife and friends noticed mood swings and irritability in my personality. I also started having weakness, palpatations and getting less sleep.

November 1st: Woke up in morning with a mild constant headache on left side of head. It did not go away all week. Called PCP and he said to go to ER to get checked out. ER did CT Scan, EKG, and tested blood sugar plus other blood work. All tests normal and suggested I see Neuro.

November 12: Saw Dr XXXX for headache and I had slight tingling on side of face/head. He prescribed generic Topamax (a migraine med) but neglected to inform me of evil side effects (more bad advice).

Nov 13: Started to have slight tingling sensation on left hand and left foot. Dr XXXX attributed it to Topamax side effects and said not to worry (bad advice).

Nov 19: Had no contrast MRI of brain which looked normal. No signs of stroke, tumor, or MS. Headache becoming worse, tingling worse.

Nov 23: Almost passed out several times from dizziness. Cannot concentrate, headache is bad, and very tired. Topamax is making symptoms worse. Noticed hot tea makes me feel better.

Nov 25: Started taking B Complex and Magnesium. Asked Neuro to start running tests to find cause but he ignored request and said to give Topamax time to work. Started cutting back on Topamax regardless.

Nov 28: Started 1st Medrol (steroid) Pak and headache immediately felt better. Weaned off Topamax by now.

Dec 4: No change in symptoms. Saw another Neuro for a second opinion. He could not explain tingling and suggested I have a Hemi Crania Continua. He prescribed Indomethicin. Dr XXXX prescribed another 1 week Medrol Pak. Noticed long hot showers helps with numbness and tingling.

Dec 8: Noticed bad neck pain at base of skull.

Dec 10: Saw Dr XXXX again today and he suggested Orthopedic doctor. He also did blood test on thyroid, renal function, and sediment test. All normal. He prescribed Gabapentin.

Dec 11: Hands shake.

Dec 17: Did EMG and NCV and results normal.

Dec 22: Had cervical MRI of neck. Everything normal. No pinched nerves.

Dec 29: Started feeling very cold day and night. Cannot sleep.

Dec 30: Tingling has moved up arms and legs. My groin and head also tingles.

Dec 31: No improvement in symptoms. Started third Medrol Pack in six weeks from Dr XXXX.

Jan 6: The tingling in my arms and legs have progressed into burning sensations. I requested Dr XXXX test me for Lyme (AB IGG) and heavy metal. Dr XXXX also tried spinal tap but was unsuccessful. Wanted me to reschedule for x-ray spinal tap.

Jan 8: IGG Lyme test came back as mixed and took more blood work for Western blot. Begged XXXX to start on antibiotic but he refused. Getting four hours of sleep per night from burning sensations, coldness, and shaking. Muscle twitching is also keeping me awake.

Jan 9: Spent $$$$ on Vitamin C, Acidophilus, CO-Q10, Alpha Lipoic Acid, Omega 3/6, and Gloucasimine. Still taking multi vitamin, magnesium, and B complex daily. Now having full blown flu/neuro symptoms. Went to Hospital ER and they did nothing since Lyme test was inconclusive. The hospital did do a titer Lyme test. Started high protein, low fat, low carb diet. Cut out sugars, sugar substitutes, and MSG. Started drinking lots of green tea. Feel like I am going to die.

Jan 10: Little change in condition but mild exercise helps. Started taking hot shower/ Epsom bath to sweat. I do this 1-2 times daily. Still feel horrible and only getting four hours of sleep. Cannot function at work but still go.

Jan 13: Saw LLMD today. All three Lyme tests came back as marginal or negative because tests were done 1-3 days removed from steroids which drop Lyme antibodies. However, I have all the classic lyme symptoms. Retaking Lyme blood work and coinfections/other tests as well with Igenex Then, I can start on Doxy and other supplements doc required. Stick with what I have been doing over past week (diet/supplements) and get rest. LLMD's outlook on my prognosis was positive.

Jan 18: Did Igenex blood work (6 bands positive) and started Culturelle, and Sacc Bacc. No change in symptoms (nasty headache and tired). However, I have been experiencing a dry cough the past few days.

Jan 20: Started 1/2 dosage Doxy LLMD prescribed. Felt real tired and hard to concentrate.

Jan 27: Started taking Mangosteen juice hoping my vision will improve. Tired, hard to concentrate, but my tingling has become worse since starting antibiotic which is probably herx.

Feb 3: Started taking 400mg Doxy. Feel like crap when it kicks in. Feeling cold and headache is coming back. Herx sucks.

Mar 7: Every day so far has been Hell since starting abx.

Mar 22: Experienced real bad dizziness today which is a new symptom.

Mar 24: I have been having pain in groin and mid section from groin to beginning of ribs. February was not a good month but March seems to have a slight lessening of the herx symptoms and overall well being is a little better. Brain fog and energy is better.

Apr 9: No change with throat, cough and groin pain. The last four weeks since 3/7 have been better with a lessening of the original January symptoms. The herx is not as bad right after taking abx. I have also been sleeping better at night the past four weeks.

May: Most of my symptoms are starting to lessen except for the numbness and tingling which has not improved at all. My adrenals are very low and but slowly getting better compared to previous months. My symptoms that showed improvement but still lingering are muscle twitches, brain fog, low energy, neck pain, shakiness, vision, chills, palpatations, and headache.

June: The soles of my feet occasionally hurt and I have frequent abdomenal pain. My adrenals are low and it takes days to recover when doing too much. Slightly better from May.

Summary: Each month, I show improvement to the pleasure of my LLMD. He said he was very proud of me to stick with the regiment of diet, exercise, etc and was "confident it will get better" but no timeline exists for that goal. This a just the greatest hits but the first two months of treatment was a daily Hell.





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